As mom's abilities have been declining, so has her ability to use the phone properly. Looking back, I can see it's been a gradual decline. It started with her not responding or becoming distracted while we were talking with her. For a time, she was answering the phone with aggravation in her voice, "What?" We had to prompt her to say good-bye at the end of our phone conversations. Most of these behaviors were before her diagnosis and we would get very irritated with her rudeness and lack of manners on the phone. It has only gotten worse since then, although rather than being irritated, we have accepted it as a part of her disease and try to find the humor in it instead.
When answering the phone, she is often confused at who she is talking to; especially when it is a solicitor. That can actually be quite amusing to hear. She usually won't answer the phone if she doesn't recognize the phone on the Caller ID. A couple of months ago, a phone call went ignored when she didn't recognize the name "Margarett Reid." Mom seemed to forget that my Aunt Peggy's 'real' name is Margarett (this is her sister-in-law).
Lately, she doesn't answer the phone when I call. I would say that nearly 90% of my calls go to their answering machine (unless my dad is home, of course). I don't know if this is because she is not recognizing the ringing sound (although she will still answer on occasion) or if she is too engrossed in her computer games to hear the call or want to bother with it. Sometimes I will start to talk on the machine,
"Mom, it's me. Cassandra. Answer the phone."
I'll wait a minute or so to see if she answers; she never does.
I have to admit that many times when my mom leaves messages on my answering machine, I am chuckling by the end of the message. With this disease, you have to develop a sense of humor, or you will never survive. I get my daily dose of humor whenever I hear a voicemail from mom. Many times, she sounds so irritated that I'm not there; I just have to laugh (for some reason she thinks that, with 5 kids, I just sit at the home by the phone all day!) She never has a greeting or farewell-this goes for phone calls as well as messages.
A couple of months ago, my dad went to Florida to help my brother move to Arizona and we were taking care of mom while he was gone. Mom got wind (from her sister Claudia) that we were planning to spend the night at her house and I came home from running some errands to hear a very angry message from my mom,
"Only mom," she took a short pause, "just calling to tell you I don't want anyone spending the night here, that's what Claudia said. No! No!" [Click]. I probably listened to that message 5 times, laughing so hard I nearly peed my pants. If you could hear the message, you'd understand why.
Yesterday, my sister called me giggling and relating that she checked her voicemail to hear one sentence from my mom.
"Oh you're not home, I was hoping you could bless me." [click]
We laughed together as I explained to my sister that mom had called me earlier that day as well. She wanted me to "bless" her by taking her to Wal-mart. When I told her I was in the middle of making dinner and had somewhere to be afterwards, she apparently called my sister.
Today, I came home from the park to find another message from mom.
"Cassandra it's your mom because your dad said to tell you, uh to call, um, to make my head-headache, my headache med- I mean" (there was a little bit of garble that I couldn't make sense of "darn it, to make my haircut thing with that girl too...[a little more garble] have her phone number but not severely early or whatever but I don't know if she's there on Wednesday or not but I don't know but maybe you could call to find out to go tomorrow or Friday or I'd like to go quicklier on Saturday. I haven't gone for a haircut since November, I need one so do that please." [click]
(On a side note, "that girl" is named Crystal and she's been doing her hair for about 20 years now). This message wasn't quite as funny as some in the past. She was clearly struggling to find the right words to communicate; she was stammering and stuttering and at some points it was hard to make out what she was saying. Hearing her struggle to communicate what she wanted made my heart a little sad.
At some point I am sure she will lose the ability to use the phone altogether. I've seen a major decline just in the past few months. Of course this is a concern as it gets harder and harder to get ahold of her when we try to call. Sometimes I get a little worried when she doesn't answer since she still is home alone part of the time (we're working on arrangements for that). But...we just take it one day at a time!
Wednesday, January 30, 2013
Monday, January 28, 2013
Change to Dollars
For some time now, mom has had issues with money. I've blogged about it before, but it seems to getting worse and worse.
I was reminded of just how bad the situation is becoming last week, when my Uncle Mike texted me after his trip to Kmart with my mom. He had texted me earlier that morning to double check that it would be okay to take her to buy some make-up at Kmart. I figured my dad wouldn't mind if he took her to get a couple beauty items that she wanted.
After spending a substancial amount of time in the make-up aisle, and trying to figure out where to find the usual items she uses, they made their way to the cashier. When it was mom's turn to pay, the items came to the total of about $38.00. Mom was quite surprised that her selected make-up items had cost so much. In the past (even within the last year), she's been very good about adding things up in her head to know how much her bill will be. It became apparent, that day at the cash register, that mom has lost that ability.
Mom whipped out her change purse, took out a few dollar bills and began stacking an assortment of dimes, nickels and quarters as she tried to count it out to $38.00.
"Do you have enough?" Uncle Mike asked her. He also asked her if she had her debit card with her to pay.
He related that mom was unresponsive to his promptings and instead focused on sorting her coins into dollar increments. Meanwhile, the line behind mom was growing. People began moving to different lines to avoid the woman at the front who was counting her pennies.
At last, she finished counting. She had come up with *about* $16.00. As she rummaged through her purse and tried to figure out what to do next, Uncle Mike offered to pick up the remaining tab, knowing my dad would later reimburse him for whatever he needed to account for. He gave her the remaining $22.00 that she needed and she paid for her make-up. As they made their way out the doors, make-up bag in hand, mom gave Uncle Mike a hug and thanked him for his gift to her. He chuckled and said,
"Well I'm sure Bud will pay me back."
She responded,
"Oh, I have my ATM card, do you want to take me to the bank so I can get you money?"
You mean she had her bank card the whole time??? Uncle Mike shook his head and told her it was fine; he'd just get the money later from Bud. He didn't want to deal with her at an ATM and wasn't sure if she would try to take money that wasn't meant to take out.
When he related this story to me, I was a little surprised. I've known her concept of money was diminishing, but up until now she seems to have been able to stay within her budget and count out how much she needs.
Today, when I was at her house, mom got out her little coin jar and dumped the change into her lap. She began sorting the coins by quarters, nickels, dimes and pennies. She ended up with about $10.00 in quarters and another $6.91 in other various coins. As she finished counting her change, I walked out of her room and back down the hallway to the livingroom, to check on my boys. Mom soon followed behind me and said,
"I have six dollars and ninety-one cents more, I need to go to the bank to get dollars. So can you take me to the bank now to get these to dollars?"
I had to hold back my giggles. Was it worth it to go to the bank to change out such a small amount? To mom, it was. There was no point in trying to reason with her to save up her change until there was a larger amount to cash in. So we got on our shoes and loaded into the car.
She wanted me to stay in the car while she went in, but I was hesitant to send her in alone and I found an excuse to accompany her inside the bank (I had a couple deposits to make). She asked the woman at the front desk,
"Can I get dollars for this?"
The woman sent her to the counter where a teller would assist her in her transaction.
Mom approached the teller and said,
"I want dollars for this."
The young woman behind the glass smiled and said she could help her; mom just needed to slip the coins under the glass.
"But how do I get this all under there? It's too big," mom said, holding her coin jar against the glass.
"Mom, she said to dump the coins out," I said, unscrewing the lid and dumping the money out under the glass which separated us from the teller.
"Oh, she wants it like that?" Mom said.
The bank teller sorted out mom's change, as mom told her how good it was for her to have some dollars to spend and what a blessing it was. She also made sure to remind the teller how much was there and not to forget to count the quarters (I slipped the teller an "oops card"). After a few minutes, the teller gave mom some "dollars": one-ten dollar bill, one-five dollar bill, one-one dollar bill and the remaining 91 cents. Mom became confused when the coins were handed back to her.
"No, I want dollars. I don't want this, I want dollars," she protested, attempting to slide the change back under the glass.
"Mom, that isn't enough to make a $1 bill," I said, placing my hand on hers to stop her from sending it back.
"No I came to get dollars," she continued to object.
Again, I tried explaining to her that it wasn't enough to make a whole dollar; it was only 91 cents. Mom looked puzzled and the bank teller studied our interaction. Mom kept counting the 91 cents, trying to make sense of what I was explaining to her. Had my arms not been full with my squirmy one-year old, not to mention my fidgety 4-year old standing beside me, I would have picked some change out of my wallet to make it an even dollar. Eventually, I reassured her that it was done correctly and picked up the change and the dollar, handing it to her and telling her to put it in her change purse. She seemed satisfied and did what I instructed her to do.
It's going to be very hard to do, but I think it may be time to take the ATM cards away and start giving her a small allowance, as the concept of money simply isn't there anymore :(
I was reminded of just how bad the situation is becoming last week, when my Uncle Mike texted me after his trip to Kmart with my mom. He had texted me earlier that morning to double check that it would be okay to take her to buy some make-up at Kmart. I figured my dad wouldn't mind if he took her to get a couple beauty items that she wanted.
After spending a substancial amount of time in the make-up aisle, and trying to figure out where to find the usual items she uses, they made their way to the cashier. When it was mom's turn to pay, the items came to the total of about $38.00. Mom was quite surprised that her selected make-up items had cost so much. In the past (even within the last year), she's been very good about adding things up in her head to know how much her bill will be. It became apparent, that day at the cash register, that mom has lost that ability.
Mom whipped out her change purse, took out a few dollar bills and began stacking an assortment of dimes, nickels and quarters as she tried to count it out to $38.00.
"Do you have enough?" Uncle Mike asked her. He also asked her if she had her debit card with her to pay.
He related that mom was unresponsive to his promptings and instead focused on sorting her coins into dollar increments. Meanwhile, the line behind mom was growing. People began moving to different lines to avoid the woman at the front who was counting her pennies.
At last, she finished counting. She had come up with *about* $16.00. As she rummaged through her purse and tried to figure out what to do next, Uncle Mike offered to pick up the remaining tab, knowing my dad would later reimburse him for whatever he needed to account for. He gave her the remaining $22.00 that she needed and she paid for her make-up. As they made their way out the doors, make-up bag in hand, mom gave Uncle Mike a hug and thanked him for his gift to her. He chuckled and said,
"Well I'm sure Bud will pay me back."
She responded,
"Oh, I have my ATM card, do you want to take me to the bank so I can get you money?"
You mean she had her bank card the whole time??? Uncle Mike shook his head and told her it was fine; he'd just get the money later from Bud. He didn't want to deal with her at an ATM and wasn't sure if she would try to take money that wasn't meant to take out.
When he related this story to me, I was a little surprised. I've known her concept of money was diminishing, but up until now she seems to have been able to stay within her budget and count out how much she needs.
Today, when I was at her house, mom got out her little coin jar and dumped the change into her lap. She began sorting the coins by quarters, nickels, dimes and pennies. She ended up with about $10.00 in quarters and another $6.91 in other various coins. As she finished counting her change, I walked out of her room and back down the hallway to the livingroom, to check on my boys. Mom soon followed behind me and said,
"I have six dollars and ninety-one cents more, I need to go to the bank to get dollars. So can you take me to the bank now to get these to dollars?"
I had to hold back my giggles. Was it worth it to go to the bank to change out such a small amount? To mom, it was. There was no point in trying to reason with her to save up her change until there was a larger amount to cash in. So we got on our shoes and loaded into the car.
She wanted me to stay in the car while she went in, but I was hesitant to send her in alone and I found an excuse to accompany her inside the bank (I had a couple deposits to make). She asked the woman at the front desk,
"Can I get dollars for this?"
The woman sent her to the counter where a teller would assist her in her transaction.
Mom approached the teller and said,
"I want dollars for this."
The young woman behind the glass smiled and said she could help her; mom just needed to slip the coins under the glass.
"But how do I get this all under there? It's too big," mom said, holding her coin jar against the glass.
"Mom, she said to dump the coins out," I said, unscrewing the lid and dumping the money out under the glass which separated us from the teller.
"Oh, she wants it like that?" Mom said.
The bank teller sorted out mom's change, as mom told her how good it was for her to have some dollars to spend and what a blessing it was. She also made sure to remind the teller how much was there and not to forget to count the quarters (I slipped the teller an "oops card"). After a few minutes, the teller gave mom some "dollars": one-ten dollar bill, one-five dollar bill, one-one dollar bill and the remaining 91 cents. Mom became confused when the coins were handed back to her.
"No, I want dollars. I don't want this, I want dollars," she protested, attempting to slide the change back under the glass.
"Mom, that isn't enough to make a $1 bill," I said, placing my hand on hers to stop her from sending it back.
"No I came to get dollars," she continued to object.
Again, I tried explaining to her that it wasn't enough to make a whole dollar; it was only 91 cents. Mom looked puzzled and the bank teller studied our interaction. Mom kept counting the 91 cents, trying to make sense of what I was explaining to her. Had my arms not been full with my squirmy one-year old, not to mention my fidgety 4-year old standing beside me, I would have picked some change out of my wallet to make it an even dollar. Eventually, I reassured her that it was done correctly and picked up the change and the dollar, handing it to her and telling her to put it in her change purse. She seemed satisfied and did what I instructed her to do.
It's going to be very hard to do, but I think it may be time to take the ATM cards away and start giving her a small allowance, as the concept of money simply isn't there anymore :(
Friday, January 25, 2013
Remembering Deana Part VII
Today's entry was written by my mom's niece, Carolyn. She is the daughter of mom's oldest brother. We couldn't find a picture of her and mom together, but I found one that mom took of Carolyn and me (mom was always the one TAKING the pictures). I'm a visual person; I think pictures make a blog more fun. So here it is. Thank you, Carolyn.
-----------------------------------------------------------------------
I grew up mostly as the shadow of my sister Patty. I followed her around and was happy to do what she told me to do (only when we were very little, not so much as I got older!). Because of this, I loved to follow her to summers at Grandma’s or Tia Deana’s house. Like her, I have fond memories of summers at Tia Deana’s. I was younger, so the silly things I remember about staying at her house was that we got to eat really great meals that were different than what my mom cooked (change is good sometimes!) and because she had the best VHS tape collection ever!!! In addition to the traditional Disney princess favorites, Tia Deana also had other fairy tale movies to show us. Rodger and Hammerstein’s Cinderella was one of them along with others that I remember like Amy Irving in Rumplestiltskin and Richard Chamberlain in another version of Cinderella, and Rebecca DeMornay in Beauty and the Beast. Tia Deana’s movies were the best – she always had a great recommend for us to watch. I remember that she even scandalously showed us Dirty Dancing when I think my parents had expressly forbade it – Tia Deana was renegade in my eyes and so, so COOL!
We spent a lot of time at Tia Deana’s house because of summers, yes, but also because she always hosted family events. Mother’s Days, Father’s Days, Thanksgivings, Christmases…. I have so many memories of holidays at my Tia’s house! Any holiday at Tia’s house meant that first the house would be immaculately clean and second that you could count on her bustling around the kitchen cooking, cleaning, serving, and being the hostess with the mostess. This is why holidays always sucked when the Alves family was in San Jose for a holiday!!! No Tia Deana’s house? No Uncle Bud to tease her and all of us? No Cassandra, Joe, and Chris to play with? Always that put a damper on our holiday fun.
I have a memory that is often vague, so I hope this is accurate…. But I remember that we all went to Knott’s Berry Farm once and I was attempting to be brave about the ride “Montezuma’s Revenge.” But as we inched closer and closer in line, my anxiety about it rose to high levels until finally when it was our turn to ride, I burst into tears. I was too embarrassed to say that I was scared, so I instead said that the Holy Ghost told me I should not get on that ride. I have no doubt that I made that up, but Tia did not mock me or make me feel silly or babyish for not wanting to ride the “scary” ride. Instead she validated my feelings, encouraged me to follow the prompting to not get on the ride, and gave me hug before I moved over and waited for her and the other kids to ride the ride and join me at the exit gate.
I also always remember her spoon collection. Tia would always pick up a commemorative/decorative spoon on any special trip that she took. I always looked forward to seeing a new spoon and hearing her tell me about the trip she took that prompted her to pick up a new spoon for her collection.
Tia Deana could always make me laugh! Sometimes just hearing her laugh would make me laugh. She was a lot like Grandma in that way, that she could find humor everywhere. Visits with my Tia always meant a lot of smiling!
I cannot offer too many specifics; all I can really say is that my childhood, growing years, and now adult years are filled with memories of family gatherings where Tia and her family were always present. My Tia Deana has always found time to talk to me, share stories of growing up with my Dad, stories of Grandma, and stories about my Mom before and after she married my Dad, not to mention compliments galore. I’ve always felt a huge amount of love and admiration from her. To me, she was a terrific mom putting up with my 3 crazy cousins, a loving wife to my crazy uncle, and a devoted daughter to the best Grandma. I have always admired her beautiful red hair, her sense of humor, her carefree spirit, her testimony of the Gospel, and her work ethic.
It’s hard to reconcile the woman she is now with who I know she still is, there in her Spirit. It’s hard to see her sparkling personality diminished. It’s hard to see her unable to converse except for the same few topics over and over again. It’s hard to see her unable to recall details, words, emotions, and memories. It’s hard to see her unable to be cognitive or self-aware. It’s hard to understand why this trial has to be hers, and her husband and children’s’ trial as well. It’s hard. But I know that her Spirit is unchanged, it is just subject to the frailties of her human body at the moment. My Tia may be different now because her brain is no longer healthy, but she is still the beautiful woman who is the author of all the sweet memories shared above. I will celebrate her and honor her always. She is my Tia and I love her!
-----------------------------------------------------------------------
We spent a lot of time at Tia Deana’s house because of summers, yes, but also because she always hosted family events. Mother’s Days, Father’s Days, Thanksgivings, Christmases…. I have so many memories of holidays at my Tia’s house! Any holiday at Tia’s house meant that first the house would be immaculately clean and second that you could count on her bustling around the kitchen cooking, cleaning, serving, and being the hostess with the mostess. This is why holidays always sucked when the Alves family was in San Jose for a holiday!!! No Tia Deana’s house? No Uncle Bud to tease her and all of us? No Cassandra, Joe, and Chris to play with? Always that put a damper on our holiday fun.
I have a memory that is often vague, so I hope this is accurate…. But I remember that we all went to Knott’s Berry Farm once and I was attempting to be brave about the ride “Montezuma’s Revenge.” But as we inched closer and closer in line, my anxiety about it rose to high levels until finally when it was our turn to ride, I burst into tears. I was too embarrassed to say that I was scared, so I instead said that the Holy Ghost told me I should not get on that ride. I have no doubt that I made that up, but Tia did not mock me or make me feel silly or babyish for not wanting to ride the “scary” ride. Instead she validated my feelings, encouraged me to follow the prompting to not get on the ride, and gave me hug before I moved over and waited for her and the other kids to ride the ride and join me at the exit gate.
I also always remember her spoon collection. Tia would always pick up a commemorative/decorative spoon on any special trip that she took. I always looked forward to seeing a new spoon and hearing her tell me about the trip she took that prompted her to pick up a new spoon for her collection.
Tia Deana could always make me laugh! Sometimes just hearing her laugh would make me laugh. She was a lot like Grandma in that way, that she could find humor everywhere. Visits with my Tia always meant a lot of smiling!
I cannot offer too many specifics; all I can really say is that my childhood, growing years, and now adult years are filled with memories of family gatherings where Tia and her family were always present. My Tia Deana has always found time to talk to me, share stories of growing up with my Dad, stories of Grandma, and stories about my Mom before and after she married my Dad, not to mention compliments galore. I’ve always felt a huge amount of love and admiration from her. To me, she was a terrific mom putting up with my 3 crazy cousins, a loving wife to my crazy uncle, and a devoted daughter to the best Grandma. I have always admired her beautiful red hair, her sense of humor, her carefree spirit, her testimony of the Gospel, and her work ethic.
It’s hard to reconcile the woman she is now with who I know she still is, there in her Spirit. It’s hard to see her sparkling personality diminished. It’s hard to see her unable to converse except for the same few topics over and over again. It’s hard to see her unable to recall details, words, emotions, and memories. It’s hard to see her unable to be cognitive or self-aware. It’s hard to understand why this trial has to be hers, and her husband and children’s’ trial as well. It’s hard. But I know that her Spirit is unchanged, it is just subject to the frailties of her human body at the moment. My Tia may be different now because her brain is no longer healthy, but she is still the beautiful woman who is the author of all the sweet memories shared above. I will celebrate her and honor her always. She is my Tia and I love her!
Thursday, January 24, 2013
UCLA 6 Month Update
Today was our 6 month check up at UCLA. I want to write about it while it's still fresh in my mind...I will do my best to relay the details of the visit ;)
Many people ask the question: "Now that she has her diagnosis, and there is no cure or treatment for semantic dementia, what is the point of continuing to go to UCLA?"
First of all, UCLA has been a Godsend to us. When our regular medical clinic doctors could not figure out what was wrong with my mom (over the period of 2 years), UCLA made a diagnosis in a matter of a few hours. These people know their stuff...they are the leaders and true experts in the field of dementia. It goes without saying that these are the professionals who will guide us through this dementia process. When my mom's primary doctor and neurologist "didn't feel comfortable" signing mom's disabilities form, because "she seems fine to me", UCLA helped us to obtain disability and Social Security for mom. These are the people we want on our team.
There is no cure for dementia. The protein present in the brain (in semantic dementia) was only discovered in 2006. There is a lot of work and research to be done. They can't do this without patients. By taking mom to UCLA, I feel like it can only help further their research in the disease. When and if they come up with experimental drugs for this form of dementia, we are already on their radar.
Mom does not share our feelings of gratitude and respect for the UCLA team. It was after her visit (and diagnosis) to UCLA last March that mom was "cancelled" as a driver. This just illustrates the point that these people are true professionals. They are mandated to report their findings to the DMV and did such; the other doctors were negligent in doing this. For anyone who has been around my mom over the past few days, they've heard her resistance about her upcoming appointment at UCLA,
"I don't want to go to those mean doctors who cancelled me as a driver."
My dad had to bribe her to go. She really wants to drive up to Utah for her and my dad's anniversary next month; dad told her that if she didn't go today, there would be no trip to Utah. It may sound harsh, but sometimes you do what you gotta do!
Last night, I told my dad that he should drive his truck to the appointment, rather than the SUV which she tends to get more motion sickness riding in. When I arrived at his house this morning, they were sitting in his truck, ready to go. Mom skipped her morning Slim Fast (which dad always urges her to do on a long car ride) and the combination of the two seemed to do the trick; she made it to UCLA without any car sickness!
Upon arrival at UCLA, my dad dropped us off at the front doors to go check in while he parked the truck. I walked mom to the receptionist and no sooner than I told them her name, mom started talking over me stating exactly how she felt about the visit,
"I'm not so happy about being here, cuz this doctor is the one who cancelled me as a driver, even though I was always a really good driver too and I don't know why he had to cancel me. I just hope he'll let me be a driver again..."
I redirected mom to sit in the waiting area until we were called back. Dad joined us and a few minutes later, Jill (the nurse practitioner) came out to greet us and bring us back to a room.
"Hi Deana, I'm Jill. I'm the nurse, do you remember me?"
I didn't hear mom's exact response, but it was something like, "You're the one who lived in San Bernardino."
Jill was amazed that mom could recall that Jill had mentioned, at their previous meeting, that she grew up in San Bernardino. Not even my dad or I remembered that detail! The only other thing mom seemed to remember from her previous visits was the fact that they "cancelled" her as a driver. And boy did she give Jill an earful...all the way down the hall and into the room!
Dr. Mendez followed behind us into the room, shook our hands and right away, mom unloaded her driving woes to him,
"But I was just so sad that you cancelled me as a driver. I was always a really good driver too. And even though, they say I have that thing...that demen-dementia thing-but I don't think I have that. What are the symptoms of that, dementia? 'Cause I don't think I have that. And I was always so good as a driver too, I never got any tickets and never any accidents, I was really so good. And even before you cancelled me, months before we went on a trip to San Diego and I drove all that way, really long way, and I did so good too and I wasn't such an unsafe driver. I'm just so sad. I can't drive myself to the store and to church and other places too and to the pharmacy and see family and other friends too..."
This conversation went on for about 15 minutes with no pause for Dr. Mendez to respond to what she was saying, no joke. Dr. Mendez tried to redirect her by asking questions. He sat right in front of her, giving her direct eye contact as he spoke.
"How are you doing otherwise?"
Mom looked at him for several seconds, trying to make sense of his question as he repeated it for her.
"I'm okay," she said hesitantly, "but I really felt so much better when I was a driver...and I don't know why you cancelled me and could I please drive again?"
She continued on, rubbing her hands together nervously, which Dr. Mendez noticed. After asking her a few times if she was nervous, and receiving no answer, he turned his attention to my dad and me.
"She seems really nervous, does she always do this with her hands?" We nodded our heads. Mom continued to talk about her driving, rarely pausing and unable to follow his redirection. Dr. Mendez finally asked us some questions, as mom continued rambling. At one point, when Dr. Mendez was looking and speaking to me, mom looked over at me, then back at Dr. Mendez and said, very assertively,
"Why do you keep talking to them when I'm talking to you?"
I have to admit, we were all suppressing our giggles at that remark.
Dr. Mendez began asking her questions in an attempt to assess where she is at in the progression of the disease. If you read about the appointment 6 months ago, you might remember that she looked at several pictures and [attempted] to name the objects and people that she saw. On the scale that they use to assess how advanced her disease is, mom was only able to pass 1 out of 20 questions. Basically, she is no longer on the charts for that assessment, which means it was not useful to put her through that series of questioning again. Instead, he asked her more basic questions.
"What is that?" he asked, pointing to mom's wedding ring.
"Huh? This? My wedding ring," she stammered.
"What is this?" he asked, tugging on her navy blue, fleece sweater. Across the front of her sweater are the words: USA. Mom looked down at the sleeve he was tugging on and responded in a low, somewhat mumbly and stuttering voice,
"This, oh I got this in Massa-Massachussetts when we went. And it says America on it, oh see it has the letters USA on it."
"But what is it?" Dr. Mendez asked again.
"It says USA," mom said, mumbling some other things about her sweater.
Dr. Mendez tried another article of clothing.
"What is that?" he asked, touching her shoe.
"Hmmm?" mom asked, looking down at her shoe while he restated the question.
"That's my shoe. And my sock," she added, looking at her sock. Then added "Jeans" as she patted her lap.
As the doctor questioned mom, I noticed that her demeanor changed and she seemed more reserved and submissive, as she tried to comprehend what he was asking her.
Dr. Mendez turned focus back to her sweater. "So what is this then? Is it your shirt?"
Mom opened up the front part of her jacket to reveal her shirt sleeve. "My shirt, yeah."
"That is your shirt, what is this thing over your shirt?" he asked again, touching her sweater.
Mom sat quiet for a moment, trying to figure out what to name her sweater. She raised her eyebrows, then furrowed them down again and she stared at her sweater. She let out a quiet "Hmph" to indicate she was thinking but not quite sure. She tugged on her right sweater sleeve with her left hand as she very meekly said,
"It's to keep me warm."
Dr. Mendez pointed to a button on her shirt.
"What is that?" he asked.
Mom studied her button intently and mumbled something inaudible. He tried to redirect her attention to the button on his shirt. It took a few promptings before she finally looked up at his button.
"I have one too, what is this called?" he asked.
She looked back down at her button and said, very quietly,
"Hmmm. I don't remember the name. It's a ba-a ball thing."
He then pointed to her purse.
"What is that?"
"Hmmm? My purse. That's my purse," she said, extending a protective hand onto her purse.
Dr. Mendez pointed to the strap on the purse.
"And what is this on your purse?" he asked.
"It's...you put it on like this," she said, grabbing the strap and putting it over her shoulder.
Our semantic memory helps us to recognize and identify things in the world around us. Our brain lumps things into categories. For example: a dog, cat, octopus, etc would be lumped into a category with animals. Pants, nylons, sweaters, etc would go into a clothes category. Mom's brain is forgetting the specific names for things in each category, but is still identifying the category itself that it belongs in. She can remember the name of her purse, but she can't name specifics on her purse (such as the strap/handle). She can still, in so many words, explain the function of many things even though she can't remember the word for it. But even her memory and recognition of many things is diminishing.
Dr. Mendez then reviewed some information about semantic dementia with us. First and foremost, he reassured me that there is no genetic link found in this particular form of frontotemporal lobe dementia. In almost every other variation of frontotemporal dementia, there is a familial link; the semantic variant is not one of them. Semantic dementia is linked to a protein found in the brain. It was only discovered in 2006, so there is still very little known as to why it is there and what it is doing.
There are no medications at this time to treat semantic dementia. The only thing we can treat are the symptoms that come with the disease. We talked about many of mom's symptoms, and worked a plan around how to treat those. One symptom we addressed is mom's rigidity in her routine and her obsessive behaviors. There are SSRI's (Selective Seratonin Reuptake Inhibitor) that can help obsessive behaviors. They are safer to take than many of the medications she is on and could possibly help with her OCD. I say possibly because each person is individual; what works for one will not work for all. They have seen improvements in some patients while in others the medications have not helped. We won't know until we try. If it is successful, mom might relax a little in her rigid routine (she is obsessive about her naptimes, leaving at a certain time from family dinners on Sundays, etc).
Another way this medication might help is in her fixations on aches, pains and bodily functions. Dr. Mendez explained to us, as he did at previous visits, about the "hypochondria" in these patients...this time in a little more detail. Patients with semantic dementia tend to (for whatever reason) become fixated on bodily functions. They seem to lose the meaning of what bodily functions represent. For example, their stomachs may growl and make noise and it confuses the patient; they can't make sense of why their stomach is making that noise and they tend to obsess about it. As Dr. Mendez was explaining this to us, my mind flashed back to the countless complaints day after day from mom about her bodily functions.
"Gosh, I'm burping so much," she says, as she lets out exaggerated burps, "I just don't know why I keep burping so much. I'm so weird. I wish the doctors could help me know why I'm burping so much."
"I'm so weird, my stomach keeps making these weird noises, I don't know why it's doing that. I'm so weird."
"I wonder if I should ask the doctor too why when I yawn I get all this watery stuff in my eyes too. It's so embarassing, I'm so weird."
Listening to Dr. Mendez' explanation connected a lot of dots for me. Focusing and obsessing on these bodily functions is part of the disease. In congruence with the bodily functions is the focus on the aches and pains. What might feel like a twitch or a pin prick to you or me feels like a very "severe" pain to mom. She is obsessed with every little thing she feels.
My dad brought up the subject of her medications. One concern we've had is the amount of medications that mom is taking (each one related to some ache or pain she is feeling).
"With the amount of medication she is on, she shouldn't be feeling any pain. She should be in la-la land," dad told Dr. Mendez.
Dr. Mendez agreed that dad had a valid point. Surely, if the pain were real, the medications she is on should be controlling the pain. He suggested that by taking an SSRI, it could relax those obsessions and fixations on her bodily functions and perhaps some of the pain would dissipate. If it works, we could then wean her from some of the pain meds she is taking.
So a plan was set: they will write a letter with their recommended plan of action and send it to mom's geriatric doctor (we all feel it's best to keep medication under the control of only one doctor). The medication they are prescribing is a generic form of Zoloft. It has been effective in some patients and unsuccessful in others. There is no sure way to tell until we try it out.
Another concern we brought to the table was about mom's weight and eating. At her last visit in July, mom weighed 152 lbs. At this visit, she weighed in at 140 lbs. (though she argued with them that their scale was inaccurate...her scale weighed her at 135 lbs). They reiterated some of the things we already knew; people with semantic dementia become very selective with their foods. They begin to lose recognition of different foods. We have certainly seen this to be true with my mom and Jill recognized that as well, having read my Thanksgiving blog. If mom does not recognize a particular food (which is most of the time), she will not even try it. Another problem is that people with this disease tend to lose their sense of smell. Eating is 90% smell. If you don't recognize a smell, or if you have problems with your sense of smell, eating becomes an issue. This, combined with the loss of recognition, is the cause of mom's lack of interest in eating. As it is now, there are about 10 things on mom's "menu" list of foods that she will eat. As time goes on, that could dwindle down even less to where she only has a couple of things she will eat. Surely, this will become an even bigger problem than it is now.
Dr. Mendez and Jill asked us if we had any other concerns or questions. My dad asked,
"Is there anything we should be expecting in the near future?"
A good question.
In relation to the food dilemma, people with dementia tend to put things in their mouths that are not food. I have read this before; patients will eat paper or put small objects in their mouth, which can become a choking hazard. They lose the meaning of food altogether. In the next year, we could possibly expect to see mom putting things in her mouth that are not food, OR she might try to eat food items in an inappropriate way. For example, she may try to eat spoonfuls of flour (it's technically a food, but it is not to be eaten by itself!)
We asked if there was any way to estimate about how long each phase will last. Understandably, they are hesitant to answer that question. This disease affects every individual differently. It could last up to 20 years with some and maybe only 2 years with others. He also made a comment about my mom still being "so young", even though she falls into the age category; she is still relatively young to be going through this. I expressed my concern that it seems to be progressing very quickly with mom. I don't intend to sound like a pessimist; but I consider myself a realist and I simply want to be prepared for what is ahead. I slightly held my breath as I figured out how to ask the question that has been on my mind,
"Is this disease more aggressive when it hits at a younger age?"
Dr. Mendez looked straight at me as he confirmed my suspicions, "Yes. It is more aggressive when it hits at a younger age."
I do appreciate his honesty.
We talked some more about prevention...making sure mom is kept safe when she is alone. Ideally, we would like someone there to monitor her and ensure her safety when dad is away, but unfortunately that is not possible at this time (we're working on that). In the meantime, we need to take necessary preventitive measures to keep her safe, just as you would a small child.
We discussed the topic of speech and I asked if she would eventually lose her entire ability to talk. He explained that it's not exactly that she will lose her ability to speak, but she will lose words, meanings of words, objects and concepts, therefore making it difficult to communicate. We can already see that happening. I suppose only time will tell how severely her speech will be limited.
After an hour and a half of talking with Jill and Dr. Mendez, we left feeling a little more educated on what is to come. We feel satisfied with a plan of action between UCLA and mom's geriatric doctor and hopeful that we might see some improvement in her behaviors. We will also be receiving additional resources on support groups and seminars to help us in this journey. We will follow up in another 6 months and in the meantime, they are there to assist us with whatever other questions or concerns that come up.
Many people ask the question: "Now that she has her diagnosis, and there is no cure or treatment for semantic dementia, what is the point of continuing to go to UCLA?"
First of all, UCLA has been a Godsend to us. When our regular medical clinic doctors could not figure out what was wrong with my mom (over the period of 2 years), UCLA made a diagnosis in a matter of a few hours. These people know their stuff...they are the leaders and true experts in the field of dementia. It goes without saying that these are the professionals who will guide us through this dementia process. When my mom's primary doctor and neurologist "didn't feel comfortable" signing mom's disabilities form, because "she seems fine to me", UCLA helped us to obtain disability and Social Security for mom. These are the people we want on our team.
There is no cure for dementia. The protein present in the brain (in semantic dementia) was only discovered in 2006. There is a lot of work and research to be done. They can't do this without patients. By taking mom to UCLA, I feel like it can only help further their research in the disease. When and if they come up with experimental drugs for this form of dementia, we are already on their radar.
Mom does not share our feelings of gratitude and respect for the UCLA team. It was after her visit (and diagnosis) to UCLA last March that mom was "cancelled" as a driver. This just illustrates the point that these people are true professionals. They are mandated to report their findings to the DMV and did such; the other doctors were negligent in doing this. For anyone who has been around my mom over the past few days, they've heard her resistance about her upcoming appointment at UCLA,
"I don't want to go to those mean doctors who cancelled me as a driver."
My dad had to bribe her to go. She really wants to drive up to Utah for her and my dad's anniversary next month; dad told her that if she didn't go today, there would be no trip to Utah. It may sound harsh, but sometimes you do what you gotta do!
Last night, I told my dad that he should drive his truck to the appointment, rather than the SUV which she tends to get more motion sickness riding in. When I arrived at his house this morning, they were sitting in his truck, ready to go. Mom skipped her morning Slim Fast (which dad always urges her to do on a long car ride) and the combination of the two seemed to do the trick; she made it to UCLA without any car sickness!
Upon arrival at UCLA, my dad dropped us off at the front doors to go check in while he parked the truck. I walked mom to the receptionist and no sooner than I told them her name, mom started talking over me stating exactly how she felt about the visit,
"I'm not so happy about being here, cuz this doctor is the one who cancelled me as a driver, even though I was always a really good driver too and I don't know why he had to cancel me. I just hope he'll let me be a driver again..."
I redirected mom to sit in the waiting area until we were called back. Dad joined us and a few minutes later, Jill (the nurse practitioner) came out to greet us and bring us back to a room.
"Hi Deana, I'm Jill. I'm the nurse, do you remember me?"
I didn't hear mom's exact response, but it was something like, "You're the one who lived in San Bernardino."
Jill was amazed that mom could recall that Jill had mentioned, at their previous meeting, that she grew up in San Bernardino. Not even my dad or I remembered that detail! The only other thing mom seemed to remember from her previous visits was the fact that they "cancelled" her as a driver. And boy did she give Jill an earful...all the way down the hall and into the room!
Dr. Mendez followed behind us into the room, shook our hands and right away, mom unloaded her driving woes to him,
"But I was just so sad that you cancelled me as a driver. I was always a really good driver too. And even though, they say I have that thing...that demen-dementia thing-but I don't think I have that. What are the symptoms of that, dementia? 'Cause I don't think I have that. And I was always so good as a driver too, I never got any tickets and never any accidents, I was really so good. And even before you cancelled me, months before we went on a trip to San Diego and I drove all that way, really long way, and I did so good too and I wasn't such an unsafe driver. I'm just so sad. I can't drive myself to the store and to church and other places too and to the pharmacy and see family and other friends too..."
This conversation went on for about 15 minutes with no pause for Dr. Mendez to respond to what she was saying, no joke. Dr. Mendez tried to redirect her by asking questions. He sat right in front of her, giving her direct eye contact as he spoke.
"How are you doing otherwise?"
Mom looked at him for several seconds, trying to make sense of his question as he repeated it for her.
"I'm okay," she said hesitantly, "but I really felt so much better when I was a driver...and I don't know why you cancelled me and could I please drive again?"
She continued on, rubbing her hands together nervously, which Dr. Mendez noticed. After asking her a few times if she was nervous, and receiving no answer, he turned his attention to my dad and me.
"She seems really nervous, does she always do this with her hands?" We nodded our heads. Mom continued to talk about her driving, rarely pausing and unable to follow his redirection. Dr. Mendez finally asked us some questions, as mom continued rambling. At one point, when Dr. Mendez was looking and speaking to me, mom looked over at me, then back at Dr. Mendez and said, very assertively,
"Why do you keep talking to them when I'm talking to you?"
I have to admit, we were all suppressing our giggles at that remark.
Dr. Mendez began asking her questions in an attempt to assess where she is at in the progression of the disease. If you read about the appointment 6 months ago, you might remember that she looked at several pictures and [attempted] to name the objects and people that she saw. On the scale that they use to assess how advanced her disease is, mom was only able to pass 1 out of 20 questions. Basically, she is no longer on the charts for that assessment, which means it was not useful to put her through that series of questioning again. Instead, he asked her more basic questions.
"What is that?" he asked, pointing to mom's wedding ring.
"Huh? This? My wedding ring," she stammered.
"What is this?" he asked, tugging on her navy blue, fleece sweater. Across the front of her sweater are the words: USA. Mom looked down at the sleeve he was tugging on and responded in a low, somewhat mumbly and stuttering voice,
"This, oh I got this in Massa-Massachussetts when we went. And it says America on it, oh see it has the letters USA on it."
"But what is it?" Dr. Mendez asked again.
"It says USA," mom said, mumbling some other things about her sweater.
Dr. Mendez tried another article of clothing.
"What is that?" he asked, touching her shoe.
"Hmmm?" mom asked, looking down at her shoe while he restated the question.
"That's my shoe. And my sock," she added, looking at her sock. Then added "Jeans" as she patted her lap.
As the doctor questioned mom, I noticed that her demeanor changed and she seemed more reserved and submissive, as she tried to comprehend what he was asking her.
Dr. Mendez turned focus back to her sweater. "So what is this then? Is it your shirt?"
Mom opened up the front part of her jacket to reveal her shirt sleeve. "My shirt, yeah."
"That is your shirt, what is this thing over your shirt?" he asked again, touching her sweater.
Mom sat quiet for a moment, trying to figure out what to name her sweater. She raised her eyebrows, then furrowed them down again and she stared at her sweater. She let out a quiet "Hmph" to indicate she was thinking but not quite sure. She tugged on her right sweater sleeve with her left hand as she very meekly said,
"It's to keep me warm."
Dr. Mendez pointed to a button on her shirt.
"What is that?" he asked.
Mom studied her button intently and mumbled something inaudible. He tried to redirect her attention to the button on his shirt. It took a few promptings before she finally looked up at his button.
"I have one too, what is this called?" he asked.
She looked back down at her button and said, very quietly,
"Hmmm. I don't remember the name. It's a ba-a ball thing."
He then pointed to her purse.
"What is that?"
"Hmmm? My purse. That's my purse," she said, extending a protective hand onto her purse.
Dr. Mendez pointed to the strap on the purse.
"And what is this on your purse?" he asked.
"It's...you put it on like this," she said, grabbing the strap and putting it over her shoulder.
Our semantic memory helps us to recognize and identify things in the world around us. Our brain lumps things into categories. For example: a dog, cat, octopus, etc would be lumped into a category with animals. Pants, nylons, sweaters, etc would go into a clothes category. Mom's brain is forgetting the specific names for things in each category, but is still identifying the category itself that it belongs in. She can remember the name of her purse, but she can't name specifics on her purse (such as the strap/handle). She can still, in so many words, explain the function of many things even though she can't remember the word for it. But even her memory and recognition of many things is diminishing.
Dr. Mendez then reviewed some information about semantic dementia with us. First and foremost, he reassured me that there is no genetic link found in this particular form of frontotemporal lobe dementia. In almost every other variation of frontotemporal dementia, there is a familial link; the semantic variant is not one of them. Semantic dementia is linked to a protein found in the brain. It was only discovered in 2006, so there is still very little known as to why it is there and what it is doing.
There are no medications at this time to treat semantic dementia. The only thing we can treat are the symptoms that come with the disease. We talked about many of mom's symptoms, and worked a plan around how to treat those. One symptom we addressed is mom's rigidity in her routine and her obsessive behaviors. There are SSRI's (Selective Seratonin Reuptake Inhibitor) that can help obsessive behaviors. They are safer to take than many of the medications she is on and could possibly help with her OCD. I say possibly because each person is individual; what works for one will not work for all. They have seen improvements in some patients while in others the medications have not helped. We won't know until we try. If it is successful, mom might relax a little in her rigid routine (she is obsessive about her naptimes, leaving at a certain time from family dinners on Sundays, etc).
Another way this medication might help is in her fixations on aches, pains and bodily functions. Dr. Mendez explained to us, as he did at previous visits, about the "hypochondria" in these patients...this time in a little more detail. Patients with semantic dementia tend to (for whatever reason) become fixated on bodily functions. They seem to lose the meaning of what bodily functions represent. For example, their stomachs may growl and make noise and it confuses the patient; they can't make sense of why their stomach is making that noise and they tend to obsess about it. As Dr. Mendez was explaining this to us, my mind flashed back to the countless complaints day after day from mom about her bodily functions.
"Gosh, I'm burping so much," she says, as she lets out exaggerated burps, "I just don't know why I keep burping so much. I'm so weird. I wish the doctors could help me know why I'm burping so much."
"I'm so weird, my stomach keeps making these weird noises, I don't know why it's doing that. I'm so weird."
"I wonder if I should ask the doctor too why when I yawn I get all this watery stuff in my eyes too. It's so embarassing, I'm so weird."
Listening to Dr. Mendez' explanation connected a lot of dots for me. Focusing and obsessing on these bodily functions is part of the disease. In congruence with the bodily functions is the focus on the aches and pains. What might feel like a twitch or a pin prick to you or me feels like a very "severe" pain to mom. She is obsessed with every little thing she feels.
My dad brought up the subject of her medications. One concern we've had is the amount of medications that mom is taking (each one related to some ache or pain she is feeling).
"With the amount of medication she is on, she shouldn't be feeling any pain. She should be in la-la land," dad told Dr. Mendez.
Dr. Mendez agreed that dad had a valid point. Surely, if the pain were real, the medications she is on should be controlling the pain. He suggested that by taking an SSRI, it could relax those obsessions and fixations on her bodily functions and perhaps some of the pain would dissipate. If it works, we could then wean her from some of the pain meds she is taking.
So a plan was set: they will write a letter with their recommended plan of action and send it to mom's geriatric doctor (we all feel it's best to keep medication under the control of only one doctor). The medication they are prescribing is a generic form of Zoloft. It has been effective in some patients and unsuccessful in others. There is no sure way to tell until we try it out.
Another concern we brought to the table was about mom's weight and eating. At her last visit in July, mom weighed 152 lbs. At this visit, she weighed in at 140 lbs. (though she argued with them that their scale was inaccurate...her scale weighed her at 135 lbs). They reiterated some of the things we already knew; people with semantic dementia become very selective with their foods. They begin to lose recognition of different foods. We have certainly seen this to be true with my mom and Jill recognized that as well, having read my Thanksgiving blog. If mom does not recognize a particular food (which is most of the time), she will not even try it. Another problem is that people with this disease tend to lose their sense of smell. Eating is 90% smell. If you don't recognize a smell, or if you have problems with your sense of smell, eating becomes an issue. This, combined with the loss of recognition, is the cause of mom's lack of interest in eating. As it is now, there are about 10 things on mom's "menu" list of foods that she will eat. As time goes on, that could dwindle down even less to where she only has a couple of things she will eat. Surely, this will become an even bigger problem than it is now.
Dr. Mendez and Jill asked us if we had any other concerns or questions. My dad asked,
"Is there anything we should be expecting in the near future?"
A good question.
In relation to the food dilemma, people with dementia tend to put things in their mouths that are not food. I have read this before; patients will eat paper or put small objects in their mouth, which can become a choking hazard. They lose the meaning of food altogether. In the next year, we could possibly expect to see mom putting things in her mouth that are not food, OR she might try to eat food items in an inappropriate way. For example, she may try to eat spoonfuls of flour (it's technically a food, but it is not to be eaten by itself!)
We asked if there was any way to estimate about how long each phase will last. Understandably, they are hesitant to answer that question. This disease affects every individual differently. It could last up to 20 years with some and maybe only 2 years with others. He also made a comment about my mom still being "so young", even though she falls into the age category; she is still relatively young to be going through this. I expressed my concern that it seems to be progressing very quickly with mom. I don't intend to sound like a pessimist; but I consider myself a realist and I simply want to be prepared for what is ahead. I slightly held my breath as I figured out how to ask the question that has been on my mind,
"Is this disease more aggressive when it hits at a younger age?"
Dr. Mendez looked straight at me as he confirmed my suspicions, "Yes. It is more aggressive when it hits at a younger age."
I do appreciate his honesty.
We talked some more about prevention...making sure mom is kept safe when she is alone. Ideally, we would like someone there to monitor her and ensure her safety when dad is away, but unfortunately that is not possible at this time (we're working on that). In the meantime, we need to take necessary preventitive measures to keep her safe, just as you would a small child.
We discussed the topic of speech and I asked if she would eventually lose her entire ability to talk. He explained that it's not exactly that she will lose her ability to speak, but she will lose words, meanings of words, objects and concepts, therefore making it difficult to communicate. We can already see that happening. I suppose only time will tell how severely her speech will be limited.
After an hour and a half of talking with Jill and Dr. Mendez, we left feeling a little more educated on what is to come. We feel satisfied with a plan of action between UCLA and mom's geriatric doctor and hopeful that we might see some improvement in her behaviors. We will also be receiving additional resources on support groups and seminars to help us in this journey. We will follow up in another 6 months and in the meantime, they are there to assist us with whatever other questions or concerns that come up.
Tuesday, January 22, 2013
A Little White Lie
Being a mom of three young children means that often times, I need to be creative at meal time. My 7-year-old, in particular, is going through an extremely picky phase with her food. I can't get her to try anything new for breakfast; everyday it is cereal. Packing a healthy lunch is like pulling teeth. And not because I have an excess of unhealthy options to choose from. I rarely buy chips, cookies and other junk and, in general, I try to stay away from too many processed foods. She's picky when it comes to sandwiches or the "main" entree of her lunch. When I make her choose a fruit or vegetable to pack along with her lunch, she acts as if I am asking her to pack a cockroach!
"I don't want to eat that...I don't like that!"
It's gotten so bad that I've had to enforce a new rule in the house: if you don't eat healthy throughout the day (including fresh fruits and vegetables), you can forget about any sweets or desserts for the rest of the day. That tends to motivate them. But not without fussing. Still, I am always looking for ways to "trick" my kids into eating healthy. Aside from simply forcing them to eat fresh fruits and veggies, I found a cookbook that teaches how to cook fruit and veggie purees into all kinds of foods: breakfast, desserts, snacks, etc. It's been fun experimenting with new recipes and even more amusing to watch them wolf down their afternoon snacks without them knowing all of the healthy fruits and veggies I've hidden inside!
When someone you love has dementia, they become very childlike (do I sound like a broken record yet??) My mom is actually far worse than my kids are when it comes to food. I can usually coax my kids into at least trying things; my mom will look at something, and if she doesn't recognize it (which is the case 90% of the time), she won't even try it. Furthermore, she will not venture away from her "staple" foods. Her main staple food for breakfast is her Slim Fast drink.
Mom complains of tummy troubles nearly everyday. Lately, it has gotten really bad (you can read more about that on my post from last week). She met with a geriatric doctor for the first time last Thursday, who will be taking over all of her healthcare and medications from here on out (rather than meeting with several doctors and getting medicated by each one). When the issue of her stomach ache came up, he suggested that she might be developing a lactose intolerance. I still believe that it has to do with the combination of the Slim Fast (known to give stomach problems) along with the liquid diet and medication. Nevertheless, we are open to exploring every angle to solve this problem. I have recently been reading a lot about dairy and links to certain health issues, so it could be possible that her body is having a hard time processing the dairy. We've talked about taking away her Slim Fast, but she becomes very combative at the mere suggestion of substituting her breakfast. We thought that, perhaps, the easiest place to start would be by substituting her milk with a lactose free variety.
I recently have been drinking almond milk, and I think it's a great alternative to milk. My dad and I went to the store that night and bought some almond milk, with the idea that we would explain to her that we would try a different milk. As my dad was unloading groceries from the car, he gave me the almond milk and asked me to explain to her what we wanted to do. I tried to tell my mom that the doctor believed that the milk might be the root of her stomach problems.
"What? No, milk is not my problem, no. Milk is always real healthy for my body too and I always drink milk and it's never given me problems, no."
"Mom, sometimes when people get older their bodies change and different foods make them feel bad," I explained, trying to break it down simply for her to understand. I knew she would not understand terms such as "lactose intolerance" and "dairy".
"Sometimes milk can make people's stomach hurt. We just want to try a different kind of milk that would help your stomach feel better," I continued.
She would not look at the milk that I was holding in my hand and presenting to her. She became angry and looked away with her eyebrows furrowed and a scowl on her face.
"No, you are making me real angry. I can drink that milk, it's okay and real good for my body. No, you guys keep picking on me. I don't like it."
She turned her body away from me and tried to walk out of the kitchen. She was met by my dad in the doorway; he held his arm across the doorway to prevent her from storming out.
"Dear, will you please just listen to her? She's trying to tell you something to help you," he said, trying to redirect her back to the conversation.
"I'm trying to help you mom," I added. "I'm trying to help your stomach problems go away."
"No I know that milk is real healthy for me. I even used to teach that to my students, that milk is healthy and nutritious for our bodies," she argued back.
"Milk is healthy, but it can also cause stomach problems," I countered.
"We just want to try something new, dear. We're trying to figure out what the cause is and we can't do that unless you try some new things. We won't know if it's the milk unless you stop drinking it for a few days and see how your stomach feels," he tried explaining.
I could almost see the words going into one ear and straight out the other. Our explanations held no meaning to her. She simply could not understand that we were trying to help her; we were trying to take something away that she wanted and in doing so we had become the enemy.
"I'm real angry with you guys picking on me! I know what I'm talking about, I know what's nutritious for my body!" she yelled back. With that said, she pushed through my dad's arm and raced down the hall to her bedroom, slamming the door behind her.
My dad and I looked at one another with discouragement in our eyes. Although we could have predicted the outcome, we had been hopeful she would listen to reason.
I attended a few support group meetings over the summer and there is one, recurring phrase that the director would say over and over. Those words continue to play in my mind and as I stood in my parent's kitchen, feeling defeat in losing the milk battle, those words returned to me again: Sometimes it is kinder to lie.
An idea came to me. I had hoped it wouldn't come to this, but it was a last resort.
"Dad...we need to switch out the milk. She will never know the difference. She mixes it with her Slim Fast anyway, and she is losing her sense of taste as it is. I don't think she'll ever notice."
Dad contemplated this solution.
With a dementia person, it is next to impossible to reason or give explanations. Trying to get them to do something they don't want to do is extremely frustrating and exhausting for the caregiver. Sometimes, a caregiver needs to be sneaky not only for their sanity, but for the sake of the person they are caring for. Mom may never know the difference if we switch her milk, but if we bring up the idea to her she will become angry and combative. Hence, it is kinder to her to simply switch out the milk without her knowledge. She can continue to be happy and think she is drinking her "nutritious" milk.
My dad has struggled with this concept. In a relationship, and particularly a marriage, honesty is the foundation for success. My parents have always had a very honest relationship. I think it's hard for him to feel as though he is deceiving his wife, even though it has become necessary in many situations. And I think he is also trying to allow her to keep her freedoms for as long as possible. As hard as it is for me to think about deceiving my mom, I know it's that much harder for my dad.
After conversing with my dad about the milk, we thought to try having my brother (who was driving in from Arizona that night) make her Slim Fast for her the next morning, substituting her milk and observing if she noticed the difference. However, after thinking more and more about that option, we concluded that it would not be the best way to go. Mom is very particular about the details of her morning Slim Fast, down to the cup she uses, the amount of milk she pours and how many times she stirs it (100, to be exact). When my sister-in-law and brother got in late that night, they were able to convince my dad to pour out her half-empty gallon of milk and substitute it with the almond milk.
The next morning, I began receiving texts from Natalie (my sister-in-law) at the time my mom was preparing her Slim Fast.
"Milk in her hand...let's see if she falls for it...she's stirring 100 times...about to drink it..."
And then finally, the text,
"Success!!! She's drinking it!"
For the remainder of the weekend, mom drank her Slim Fast, every morning, never knowing that we had switched her milk. It could be coincidence, or it could be the almond milk, but mom's stomach problems have not been as "severe" over the past few days. Indeed, sometimes it is "kinder to lie".
Our next step: to replace her chocolate Slim Fast with chocolate protein powder!
"I don't want to eat that...I don't like that!"
It's gotten so bad that I've had to enforce a new rule in the house: if you don't eat healthy throughout the day (including fresh fruits and vegetables), you can forget about any sweets or desserts for the rest of the day. That tends to motivate them. But not without fussing. Still, I am always looking for ways to "trick" my kids into eating healthy. Aside from simply forcing them to eat fresh fruits and veggies, I found a cookbook that teaches how to cook fruit and veggie purees into all kinds of foods: breakfast, desserts, snacks, etc. It's been fun experimenting with new recipes and even more amusing to watch them wolf down their afternoon snacks without them knowing all of the healthy fruits and veggies I've hidden inside!
When someone you love has dementia, they become very childlike (do I sound like a broken record yet??) My mom is actually far worse than my kids are when it comes to food. I can usually coax my kids into at least trying things; my mom will look at something, and if she doesn't recognize it (which is the case 90% of the time), she won't even try it. Furthermore, she will not venture away from her "staple" foods. Her main staple food for breakfast is her Slim Fast drink.
Mom complains of tummy troubles nearly everyday. Lately, it has gotten really bad (you can read more about that on my post from last week). She met with a geriatric doctor for the first time last Thursday, who will be taking over all of her healthcare and medications from here on out (rather than meeting with several doctors and getting medicated by each one). When the issue of her stomach ache came up, he suggested that she might be developing a lactose intolerance. I still believe that it has to do with the combination of the Slim Fast (known to give stomach problems) along with the liquid diet and medication. Nevertheless, we are open to exploring every angle to solve this problem. I have recently been reading a lot about dairy and links to certain health issues, so it could be possible that her body is having a hard time processing the dairy. We've talked about taking away her Slim Fast, but she becomes very combative at the mere suggestion of substituting her breakfast. We thought that, perhaps, the easiest place to start would be by substituting her milk with a lactose free variety.
"What? No, milk is not my problem, no. Milk is always real healthy for my body too and I always drink milk and it's never given me problems, no."
"Mom, sometimes when people get older their bodies change and different foods make them feel bad," I explained, trying to break it down simply for her to understand. I knew she would not understand terms such as "lactose intolerance" and "dairy".
"Sometimes milk can make people's stomach hurt. We just want to try a different kind of milk that would help your stomach feel better," I continued.
She would not look at the milk that I was holding in my hand and presenting to her. She became angry and looked away with her eyebrows furrowed and a scowl on her face.
"No, you are making me real angry. I can drink that milk, it's okay and real good for my body. No, you guys keep picking on me. I don't like it."
She turned her body away from me and tried to walk out of the kitchen. She was met by my dad in the doorway; he held his arm across the doorway to prevent her from storming out.
"Dear, will you please just listen to her? She's trying to tell you something to help you," he said, trying to redirect her back to the conversation.
"I'm trying to help you mom," I added. "I'm trying to help your stomach problems go away."
"No I know that milk is real healthy for me. I even used to teach that to my students, that milk is healthy and nutritious for our bodies," she argued back.
"Milk is healthy, but it can also cause stomach problems," I countered.
"We just want to try something new, dear. We're trying to figure out what the cause is and we can't do that unless you try some new things. We won't know if it's the milk unless you stop drinking it for a few days and see how your stomach feels," he tried explaining.
I could almost see the words going into one ear and straight out the other. Our explanations held no meaning to her. She simply could not understand that we were trying to help her; we were trying to take something away that she wanted and in doing so we had become the enemy.
"I'm real angry with you guys picking on me! I know what I'm talking about, I know what's nutritious for my body!" she yelled back. With that said, she pushed through my dad's arm and raced down the hall to her bedroom, slamming the door behind her.
My dad and I looked at one another with discouragement in our eyes. Although we could have predicted the outcome, we had been hopeful she would listen to reason.
I attended a few support group meetings over the summer and there is one, recurring phrase that the director would say over and over. Those words continue to play in my mind and as I stood in my parent's kitchen, feeling defeat in losing the milk battle, those words returned to me again: Sometimes it is kinder to lie.
An idea came to me. I had hoped it wouldn't come to this, but it was a last resort.
"Dad...we need to switch out the milk. She will never know the difference. She mixes it with her Slim Fast anyway, and she is losing her sense of taste as it is. I don't think she'll ever notice."
Dad contemplated this solution.
With a dementia person, it is next to impossible to reason or give explanations. Trying to get them to do something they don't want to do is extremely frustrating and exhausting for the caregiver. Sometimes, a caregiver needs to be sneaky not only for their sanity, but for the sake of the person they are caring for. Mom may never know the difference if we switch her milk, but if we bring up the idea to her she will become angry and combative. Hence, it is kinder to her to simply switch out the milk without her knowledge. She can continue to be happy and think she is drinking her "nutritious" milk.
My dad has struggled with this concept. In a relationship, and particularly a marriage, honesty is the foundation for success. My parents have always had a very honest relationship. I think it's hard for him to feel as though he is deceiving his wife, even though it has become necessary in many situations. And I think he is also trying to allow her to keep her freedoms for as long as possible. As hard as it is for me to think about deceiving my mom, I know it's that much harder for my dad.
After conversing with my dad about the milk, we thought to try having my brother (who was driving in from Arizona that night) make her Slim Fast for her the next morning, substituting her milk and observing if she noticed the difference. However, after thinking more and more about that option, we concluded that it would not be the best way to go. Mom is very particular about the details of her morning Slim Fast, down to the cup she uses, the amount of milk she pours and how many times she stirs it (100, to be exact). When my sister-in-law and brother got in late that night, they were able to convince my dad to pour out her half-empty gallon of milk and substitute it with the almond milk.
The next morning, I began receiving texts from Natalie (my sister-in-law) at the time my mom was preparing her Slim Fast.
"Milk in her hand...let's see if she falls for it...she's stirring 100 times...about to drink it..."
And then finally, the text,
"Success!!! She's drinking it!"
For the remainder of the weekend, mom drank her Slim Fast, every morning, never knowing that we had switched her milk. It could be coincidence, or it could be the almond milk, but mom's stomach problems have not been as "severe" over the past few days. Indeed, sometimes it is "kinder to lie".
Our next step: to replace her chocolate Slim Fast with chocolate protein powder!
Friday, January 18, 2013
Remembering Deana Part VI
Today's post was written by my sister-in-law, Natalie, who is married to my twin brother, Joe. Enjoy!
---------------------------------------------------------------------
When Cassandra (my sister in law) talks about her mom and how she used to be I’m sad I never got to be part of those moments. Deana’s behavior started changing right about the time I met her son Joe. Despite this, she was still able to do a lot of things that she isn’t able to do now.
One of my fondest memories of my mother-in-law is when I joined my [then] boyfriend on a vacation to the east coast in 2007. It is where I first got to know her and Bud, my father-in-law. I remember being incredibly apprehensive about meeting them. Hoping to make a good impression, I conversed with Deana at length about myself and how much I cared for her son. She was so kind and open. I fell in love with her immediately. Her kind blue eyes didn’t judge me. I was investigating the Church (I wasn’t yet a member) and I didn’t quite know how she would feel about it. Early one morning I remember making Joe stop at a Starbucks in Connecticut. I NEEDED my mocha latte to start my day. She didn’t say a word about it to me! Now it makes me giggle because I’m sure she was giving Bud an earful about it in the car. During our time there we went to Connecticut to visit Bud’s side of the family. We enjoyed visiting the sea port, going on a drive up to Salem, Massachusetts, some battlegrounds in Lexington and Concord and finally a stop in New York City. Deana was engaged, excited, and happy going. It was a pleasure to travel with her. I loved seeing how lovey dovey she was with Bud. Growing up in a single parent home, I never got to see that type of interaction between a “Mom and Dad” It was refreshing. These two clearly were the cutest love birds.
After this we emailed back and forth on many occasions. She was really great at giving advice. Just before we moved to Arizona I came across several emails that she had written me. Now I don’t even recognize the person who wrote those insightful emails. It saddened me to actually see this great change in writing.
Joe and I got married during thanksgiving in 2009. I got a taste of Deana’s famous Thanksgiving dinner. To say the least it was the most incredible Thanksgiving dinner I had ever eaten. While Joe and Bud visited the everglades in the morning of Thanksgiving Day she single handedly cooked a feast. Turkey and gravy, lyonnaised carrots, mashed potatoes, rolls, a couple of other things I can’t recall at the moment. It was amazing. She was an amazing cook. I remember emailing her about recipes all the time when Joe and I first got married.
During the same week, our wedding day is when I also started to note a few behaviors that were a little off. This was before her heart surgery, which we all first attributed the changes we were seeing. I wondered why she hugged her purse all night during Thanksgiving at my family’s house or why she kept making strange comments about our wedding cake and how she could have done it better... it wasn’t like her.
Shortly after, she went in for her heart surgery and this really the last time I got to see any of the Deana I had first met in Connecticut. She progressed at a rapid rate. When our daughter was born, she and Bud came to visit. I was a bit hurt with the disconnect there was between her and Adri. She was excited to be there but was emotionally withdrawn. They came to visit again right before Adri turned one. She helped me bake Adri’s first cake. She was incredibly picky about food. Only wanted to eat certain things. We didn’t yet know what was really going on. It was so confusing.
Today I can’t have a conversation with my mother-in-law. I can’t ask her for any parenting advice or what’s the best type of icing to use for birthday cakes. I can’t expect her to even remember who I am if I don’t visit every month. It’s sad and I hate that she has to have this disease. It’s comforting to know that this time here on earth is but a minute in all of eternity and that I will have an opportunity to meet her again-in a place that she is whole once more.
---------------------------------------------------------------------
After this we emailed back and forth on many occasions. She was really great at giving advice. Just before we moved to Arizona I came across several emails that she had written me. Now I don’t even recognize the person who wrote those insightful emails. It saddened me to actually see this great change in writing.
Joe and I got married during thanksgiving in 2009. I got a taste of Deana’s famous Thanksgiving dinner. To say the least it was the most incredible Thanksgiving dinner I had ever eaten. While Joe and Bud visited the everglades in the morning of Thanksgiving Day she single handedly cooked a feast. Turkey and gravy, lyonnaised carrots, mashed potatoes, rolls, a couple of other things I can’t recall at the moment. It was amazing. She was an amazing cook. I remember emailing her about recipes all the time when Joe and I first got married.
During the same week, our wedding day is when I also started to note a few behaviors that were a little off. This was before her heart surgery, which we all first attributed the changes we were seeing. I wondered why she hugged her purse all night during Thanksgiving at my family’s house or why she kept making strange comments about our wedding cake and how she could have done it better... it wasn’t like her.
Shortly after, she went in for her heart surgery and this really the last time I got to see any of the Deana I had first met in Connecticut. She progressed at a rapid rate. When our daughter was born, she and Bud came to visit. I was a bit hurt with the disconnect there was between her and Adri. She was excited to be there but was emotionally withdrawn. They came to visit again right before Adri turned one. She helped me bake Adri’s first cake. She was incredibly picky about food. Only wanted to eat certain things. We didn’t yet know what was really going on. It was so confusing.
Today I can’t have a conversation with my mother-in-law. I can’t ask her for any parenting advice or what’s the best type of icing to use for birthday cakes. I can’t expect her to even remember who I am if I don’t visit every month. It’s sad and I hate that she has to have this disease. It’s comforting to know that this time here on earth is but a minute in all of eternity and that I will have an opportunity to meet her again-in a place that she is whole once more.
Tuesday, January 15, 2013
Tummy Trouble
Yesterday the kids headed back to school, and I started to settle back into my weekly routine, beginning with my Monday at mom's house.
The morning greeted me with a fierce wind and a crisp chill in the air. As I pulled up to mom's house, I hurriedly got the boys out of the car, struggling as I tried to balance my one year old on my hip while carrying in some other items; all the while, the wind was wildly blowing my hair in my face, making it difficult to see what I was doing. We rushed up to the front door and rang the bell. And waited. And waited. And waited. I fumbled with my keys as I tried to find the right one for the screen door. Ever since dad re-keyed the front doors, I've been having trouble with my key. After a couple of minutes, which seemed much longer than a couple of minutes while battling the winds, I managed to get the lock opened and walked into the dark, empty living room.
This has become our routine: me, ringing the bell and fumbling with my keys, while mom sits in her back bedroom ignoring the sound of the bell. She doesn't want to come out and answer the door looking like a "plain Jane". She's been doing this to my Aunts and Uncle who have been going over weekly to help her as well. Fortunately for me, I have a key to the house. Unfortunately for them, they don't. They call on the phone; she ignores the calls. They usually end up texting or calling me and I tell them to keep ringing until she answers. Eventually she answers the door.
As soon as I entered the house, I opened up the blinds to let some sunlight into the room. I set up the "Thomas The Train" tracks and train for the boys to play on, then went in search for my mom. Of course I knew right where she was at. I knocked lightly on her bedroom door and said, "Mom, it's me," as I let myself into her room. I found her in the dark, sitting on the edge of her bed with her back slumped forward and arms folded across her chest. She looked over at me and immediately began filling me in on everything on her mind, jumping from topic to topic and barely pausing inbetween or allowing me to get a word in edgewise.
"Were you told how severely sick I am? I'm really severe, my stomach. Since Saturday. I've been so severe and sick and my tummy hurts real bad in here too," she rubs her tummy as she talks to me, "and yesterday I didn't even go to church 'cause I felt too severe and I even threw up last night too. And my nose and my eyes were real wet too, with watery stuff on them too and it's so weird, I'm so weird."
I tried interrupting her to ask her what she had eaten yesterday. I strongly believe there is a connection between her eating (or lack of) and her stomach problems. She stared at me with a blank face while I repeated the question to which she finally answered,
"Your dad made me eat some salad stuff for dinner 'cause I wasn't real hungry but I didn't eat much yesterday so he told me to eat some salad then. But my stomach has these pains here and I hope I'm not getting that real severe stomach sick thing that comes, thas happens around November-I hope I'm not getting that. I'm just so sad, I wish the doctors would help me with my stomach problems too, I'm just so sad. I feel so severe. I just hope I'm not dying, I hope I'm not gonna die but I haven't seen anyone spiritually, I haven't seen my mom, so no, I'm not dying but I feel so sad and so weird, with how I'm changing too."
Without skipping a beat, she continued, "I'm just getting so weird and I feel like I'm really looking so weird too and when I wake up my hair is sticking up like this," she pulls her hair straight up, "and I look like Sister [So-n-so] from school-from church. And even though yesterday I put some make-up on and your dad was real okay with me. He says he's still okay with me and that I still look like when I was a teenager, but I don't think so, no. He still tells me every morning 'love you dear' so he's still happy with me, thank goodness, even though I'm looking so weird and different. And I just hope that you're okay with me too with how I'm changing."
At this point in the conversation (this is a recurring conversation every time I see her), I reassure her that she looks like the same mom I grew up with and that she looks just fine without her make-up on.
I asked my mom if I could make her some toast to help settle her stomach.
"Toast...I'm trying to remember what toast is..."
I reminded her that it was bread with peanut butter and that she used to make it for me when I was sick and when I was pregnant and unable to keep any food down. She insisted that she wasn't feeling hungry and would not eat it. I decided to give her until lunch time before I forced her to eat anything.
I'm concerned about her eating situation. Her pickiness has made mealtime extremely difficult. There are approximately 10 different menu items that she will eat between breakfast, lunch and dinner. Lately, she feels too "severe" to eat at all. Like I mentioned earlier, I believe this is a combination of the medications she is taking and the foods she is/isn't eating. She starts the morning off with Slim Fast and medication. Slim Fast has been known to be the source of gas and stomach discomfort. Trying to argue this fact with mom is about as productive as trying to pull a full-grown oak tree out of the ground with your bare hands: it simply won't budge. I think the Slim Fast itself, along with the fact that it's pure liquid, and in combination with her medication, causes her stomach to become upset. Once her stomach is upset, she decides that she doesn't want to eat because it will make her feel worse. I know that when I am very hungry, I start to feel a little nauseous and headachey, which is what she expresses that she feels often. I think that she is also having hunger pains but has lost the ability to recognize it as pains due to her hunger. That is common with this disease (from what I have learned); to lose the ability to know when one is full or hungry. When she starts to feel sick like this, she "psychs" herself out and I think she actually talks herself into throwing up. It starts with exaggerated gagging noises, followed by her spitting out "watery stuff", and then usually finishes with her gagging her food/drink out.
Towards the beginning of this disease, mom put on a lot of weight. Again, this is most likely due to the fact that they lose the ability to tell when they are "full", and they tend to overeat. Then there comes a point where they lose weight. This can be due to many reasons: pickiness, losing the ability to swallow, etc. About 1 1/2-2 years ago, mom's weight was at her all time heaviest, around 180 lbs. She is now down to 140 lbs (which is even below her average weight) and I'd say a good part of that weight has been lost within the last 6-9 months. She thinks it's great and wonderful that she is losing weight, but it is not being done in the right manner and I worry with how quickly she's been losing it.
I left my mom in her room to rest for a while and went into the office, where I drafted a chart to track what mom is eating everyday as pictured...not the greatest picture in the world, but you get the idea ;)). Basically, it tracks what she is eating everyday for breakfast, lunch, dinner and snacks inbetween. As you can see, Sunday she hardly ate a thing, which is what I'm afraid has been happening far too much lately. I printed out a few copies and put them in a 3 ring binder. I shared this information with family members who go over to her house and asked that they could write down what she is eating and approximate quantities of her food. I'm hoping that this will help give us, and her doctors, a better idea of what is upsetting her and work on how to address it. Of course, I have my theory on her stomach issues, but having it written out will be beneficial in taking it to her doctor. Sometimes patients respond better when a doctor tells them what the problem is then when a family member tries to tell them.
I explained the chart and the reasoning behind it to my mom. I don't think she understood much of what I saying and I don't have high hopes that she will fill it out herself. That is why I talked to family members and my dad and asked them to track her eating everyday, as a group effort.
A little after noon, I went back into mom's room and brought to her attention that it was past lunchtime. She very faintly shook her head and said,
"No my stomach is still hurting, I'm not hungry."
I suggested that she might feel better if she eat and was pretty insistent with her that she needed to get some food in her stomach. I gently took her hand and pulled her up and off of her bed and down the hallway to the kitchen. To my complete amazement, mom was compliant; although she did not want peanut butter toast. She wanted her usual turkey, tomato and american-sliced cheese sandwich with lots of mustard and submarine oil. I was just happy that she ate.
I was not with her later in the day, so I don't know if she ate later on or if she started to feel any better, but hopefully it's all being written down on her chart. Hypochondria is a common symptom with her disease, and I know sometimes we all get tired of hearing the same conversations every time she talks (about how "severe" she is feeling). While we sometimes have to ignore some of the complaining, I think we also need to help her problem solve so she can be more comfortable. Her "severe" stomach problems could be a simple problem to solve. Solving is much harder than it sounds with a person with dementia, however, as they cannot comprehend much and are not very agreeable with what you want them to do. We are meeting with a geriatric doctor for the first time this week, who specializes in care for the elderly and people with dementia; this means all of her health issues and medications will be taken care of by ONE doctor, rather than the several she has been seeing. Hopefully this will help in managing the "severe" aches and pains she has been feeling.
The morning greeted me with a fierce wind and a crisp chill in the air. As I pulled up to mom's house, I hurriedly got the boys out of the car, struggling as I tried to balance my one year old on my hip while carrying in some other items; all the while, the wind was wildly blowing my hair in my face, making it difficult to see what I was doing. We rushed up to the front door and rang the bell. And waited. And waited. And waited. I fumbled with my keys as I tried to find the right one for the screen door. Ever since dad re-keyed the front doors, I've been having trouble with my key. After a couple of minutes, which seemed much longer than a couple of minutes while battling the winds, I managed to get the lock opened and walked into the dark, empty living room.
This has become our routine: me, ringing the bell and fumbling with my keys, while mom sits in her back bedroom ignoring the sound of the bell. She doesn't want to come out and answer the door looking like a "plain Jane". She's been doing this to my Aunts and Uncle who have been going over weekly to help her as well. Fortunately for me, I have a key to the house. Unfortunately for them, they don't. They call on the phone; she ignores the calls. They usually end up texting or calling me and I tell them to keep ringing until she answers. Eventually she answers the door.
As soon as I entered the house, I opened up the blinds to let some sunlight into the room. I set up the "Thomas The Train" tracks and train for the boys to play on, then went in search for my mom. Of course I knew right where she was at. I knocked lightly on her bedroom door and said, "Mom, it's me," as I let myself into her room. I found her in the dark, sitting on the edge of her bed with her back slumped forward and arms folded across her chest. She looked over at me and immediately began filling me in on everything on her mind, jumping from topic to topic and barely pausing inbetween or allowing me to get a word in edgewise.
"Were you told how severely sick I am? I'm really severe, my stomach. Since Saturday. I've been so severe and sick and my tummy hurts real bad in here too," she rubs her tummy as she talks to me, "and yesterday I didn't even go to church 'cause I felt too severe and I even threw up last night too. And my nose and my eyes were real wet too, with watery stuff on them too and it's so weird, I'm so weird."
I tried interrupting her to ask her what she had eaten yesterday. I strongly believe there is a connection between her eating (or lack of) and her stomach problems. She stared at me with a blank face while I repeated the question to which she finally answered,
"Your dad made me eat some salad stuff for dinner 'cause I wasn't real hungry but I didn't eat much yesterday so he told me to eat some salad then. But my stomach has these pains here and I hope I'm not getting that real severe stomach sick thing that comes, thas happens around November-I hope I'm not getting that. I'm just so sad, I wish the doctors would help me with my stomach problems too, I'm just so sad. I feel so severe. I just hope I'm not dying, I hope I'm not gonna die but I haven't seen anyone spiritually, I haven't seen my mom, so no, I'm not dying but I feel so sad and so weird, with how I'm changing too."
Without skipping a beat, she continued, "I'm just getting so weird and I feel like I'm really looking so weird too and when I wake up my hair is sticking up like this," she pulls her hair straight up, "and I look like Sister [So-n-so] from school-from church. And even though yesterday I put some make-up on and your dad was real okay with me. He says he's still okay with me and that I still look like when I was a teenager, but I don't think so, no. He still tells me every morning 'love you dear' so he's still happy with me, thank goodness, even though I'm looking so weird and different. And I just hope that you're okay with me too with how I'm changing."
At this point in the conversation (this is a recurring conversation every time I see her), I reassure her that she looks like the same mom I grew up with and that she looks just fine without her make-up on.
I asked my mom if I could make her some toast to help settle her stomach.
"Toast...I'm trying to remember what toast is..."
I reminded her that it was bread with peanut butter and that she used to make it for me when I was sick and when I was pregnant and unable to keep any food down. She insisted that she wasn't feeling hungry and would not eat it. I decided to give her until lunch time before I forced her to eat anything.
I'm concerned about her eating situation. Her pickiness has made mealtime extremely difficult. There are approximately 10 different menu items that she will eat between breakfast, lunch and dinner. Lately, she feels too "severe" to eat at all. Like I mentioned earlier, I believe this is a combination of the medications she is taking and the foods she is/isn't eating. She starts the morning off with Slim Fast and medication. Slim Fast has been known to be the source of gas and stomach discomfort. Trying to argue this fact with mom is about as productive as trying to pull a full-grown oak tree out of the ground with your bare hands: it simply won't budge. I think the Slim Fast itself, along with the fact that it's pure liquid, and in combination with her medication, causes her stomach to become upset. Once her stomach is upset, she decides that she doesn't want to eat because it will make her feel worse. I know that when I am very hungry, I start to feel a little nauseous and headachey, which is what she expresses that she feels often. I think that she is also having hunger pains but has lost the ability to recognize it as pains due to her hunger. That is common with this disease (from what I have learned); to lose the ability to know when one is full or hungry. When she starts to feel sick like this, she "psychs" herself out and I think she actually talks herself into throwing up. It starts with exaggerated gagging noises, followed by her spitting out "watery stuff", and then usually finishes with her gagging her food/drink out.
Towards the beginning of this disease, mom put on a lot of weight. Again, this is most likely due to the fact that they lose the ability to tell when they are "full", and they tend to overeat. Then there comes a point where they lose weight. This can be due to many reasons: pickiness, losing the ability to swallow, etc. About 1 1/2-2 years ago, mom's weight was at her all time heaviest, around 180 lbs. She is now down to 140 lbs (which is even below her average weight) and I'd say a good part of that weight has been lost within the last 6-9 months. She thinks it's great and wonderful that she is losing weight, but it is not being done in the right manner and I worry with how quickly she's been losing it.
I explained the chart and the reasoning behind it to my mom. I don't think she understood much of what I saying and I don't have high hopes that she will fill it out herself. That is why I talked to family members and my dad and asked them to track her eating everyday, as a group effort.
A little after noon, I went back into mom's room and brought to her attention that it was past lunchtime. She very faintly shook her head and said,
"No my stomach is still hurting, I'm not hungry."
I suggested that she might feel better if she eat and was pretty insistent with her that she needed to get some food in her stomach. I gently took her hand and pulled her up and off of her bed and down the hallway to the kitchen. To my complete amazement, mom was compliant; although she did not want peanut butter toast. She wanted her usual turkey, tomato and american-sliced cheese sandwich with lots of mustard and submarine oil. I was just happy that she ate.
I was not with her later in the day, so I don't know if she ate later on or if she started to feel any better, but hopefully it's all being written down on her chart. Hypochondria is a common symptom with her disease, and I know sometimes we all get tired of hearing the same conversations every time she talks (about how "severe" she is feeling). While we sometimes have to ignore some of the complaining, I think we also need to help her problem solve so she can be more comfortable. Her "severe" stomach problems could be a simple problem to solve. Solving is much harder than it sounds with a person with dementia, however, as they cannot comprehend much and are not very agreeable with what you want them to do. We are meeting with a geriatric doctor for the first time this week, who specializes in care for the elderly and people with dementia; this means all of her health issues and medications will be taken care of by ONE doctor, rather than the several she has been seeing. Hopefully this will help in managing the "severe" aches and pains she has been feeling.
Monday, January 14, 2013
I'm still here!
Last night, my sister-in-law told me I need to "get crackin'" on my blog (she is an avid reader ;) ). I know I haven't been so great about blogging these past few weeks and I wanted to let you all know that I AM ALIVE!!!! My kids have been on winter break for 3 weeks; today is their first day back to school!! It's been challenging, as you can imagine, to find time to blog with 5 kids to tend to. When they are on break, I try my best to be active with them and create good memories. We've been busy crafting, cleaning, going to the movies, Knott's Berry Farm and other outings. Not to mention the holidays thrown in the mix and out-of-town family visiting! To those who read my blog...hang in there, I'll be writing again this week!!
Friday, January 4, 2013
Blue Christmas
Christmas is finally over.
Ordinarily, I love every single moment of the Christmas season. It is my favorite season of the entire year and I anticipate it for months in advance. I relish in choosing the perfect gifts for each person, in going to the Christmas parties and hearing the joyful sounds of Christmas carols.
This year, I was just wasn't feeling that Christmas spirit. We had some nice moments and carried on our family traditions of building Gingerbread houses and Christmas cookies, visiting Santa, going downtown to see the lights, reading scriptures on the birth of Jesus. We did Christmas crafts and attended Christmas concerts (band and choir) for our girls. I did my usual Christmas baking and delivered goodies to close friends. We went to a Christmas party at church with my dad and I even threw the kids a party/gift exchange with their friends. I picked out the best gifts for the people I love, things that came from the heart that I knew they would love. But as hard as I tried, I couldn't shake off the feeling of emptiness and sadness that hung over my head, like a dark cloud. Something was missing.
That something, is my mom. I miss my mom. In years past, we spent our baking days together, listening to Christmas music while we worked. We always went shopping together, whether it was to shop for the kids or shop for my dad or to pick out presents for other people on our list. Mom loved it when we came to her ward's Christmas party at church. It's always been important to my parents to have all the grandkids together for those kinds of parties and keep our family traditions intact.
The season started out a little bit better than expected. Mom made a Christmas card list, filled out all of her Christmas cards, complete with a message about Jesus, and sent them all out on her own. That was encouraging to me! We went over to their house to help them decorate the tree, and she remembered how to do that (even though it was not decorated up to her pre-dementia perfectionist standards). I felt a little bit of hope that maybe she would still remember and engage in our Christmas traditions of the past.
As the season wore on, mom seemed disconnected from all the festivities surrounding her. She did not go the Christmas parties at church. She couldn't remember what any of our Christmas goodies were, let alone help bake them. She didn't know who Santa was. She seemed confused on what many of the festivities were about. Aside from the shopping trip to Kmart for my dad, she didn't engage or even attempt to engage in any Christmas shopping. My siblings and I coordinated all of the Christmas meals without any interest or input from my mom (she was just happy that I had assigned her to bring the broccoli-cauliflower salad for Christmas Eve).
On Christmas morning, we did what we do every year: we opened our presents at home with our kids and then went over to mom and dad's for our traditional Christmas breakfast. Christmas is not Christmas without this breakfast. We wait all year to have this yummy goodness. We have had this breakfast every single year of my life. Mom's mom came up with this recipe and started making it for her kids when mom was little. So by all means, mom should have remembered Christmas breakfast. As I was began making breakfast, mom walked into the kitchen. I asked mom if she'd be having Christmas breakfast with us, knowing deep down that she wouldn't have any. She looked at it strangely and said,
"No I didn't know about that."
"Mom, this is the Christmas breakfast that your mom created. We've eaten it every year, you always loved it! Christmas isn't Christmas without it!"
"No I didn't remember about that. I already drank my Slim Fast," she said, as she walked out of the kitchen.
It was the expected response, but still disheartening to say the least. If she's forgotten the traditions of the holiday that we've held so near and dear all these years, who is to say she will even remember the holiday itself next year?
In the past, mom always got giddy at present time. She absolutely loved to pass out presents to her grandkids and delighted in their reactions to what she had picked out for them. This time, mom sat on the couch, staring straight ahead with a blank look on her face. She showed no reaction and no emotion as we each took our turns opening presents. At one point, my niece went up to her to give her a hug and say thank you for the present. Mom had very little response; she didn't hug her back and seemed confused as to why she was hugging her and what she was saying to her.
The only time she showed any emotion to any present opened was when dad opened the laundry detergent that he had given her. Dad knew that mom had picked out something bizarre for him; he had been anticipating what it was for days. We all huddled around him as he opened the present and directed mom's attention to dad. As dad opened his present, to find Gain laundry detergent, he had sheer amusement on his face. We were all chuckling and finding the humor in the situation. Dad looked at mom and said,
"Thanks dear. I need this."
Mom sat slightly forward in her seat on the couch and, waving her finger towards the laundry soap, told him very seriously,
"Yeah, that's why I got you that, yeah. I know you like that."
"Perfect. Absolutely perfect," dad said, trying to contain the chuckles.
For as long as I can remember, my dad has always filled out his gift tags to mom using pet names. In fact, they both did it. They would write things such as: "To Mrs. Claus, from Mr. Claus" or "To Dee, From Guess Who" or "To Toots, From Sancho" (don't know if I spelled Toots right). I always thought it was cute that they "spiced" it up and made it fun. This year, mom was confused with the tags on the gifts dad gave.
"Huh? What do you mean, Guess Who? What? Who is this for? Why does it say this, Guess Who?" or "Toots, what? I don't know what this means."
When she opened her gifts, she wasn't overly excited and she was sometimes a bit confused at what she was receiving. I had to explain to her several times that the skirts she opened from me were made by me, as she's been hounding me for months about making her skirts,
"I don't know why you won't ever make me any skirts, you're so talented. I wish you would make me some skirts."
She seemed to like the skirts, though she wasn't overly enthusiastic as she has been in years past.
By the time the rest of the extended family showed up (near 1:00), mom was ready for a nap. She was concerned about people coming over during naptime, but dad kept reiterating that it was Christmas and that people would be over to celebrate. That's what we do for holidays. She went back to her room alone, making no exception for the holiday.
I don't know what the future holds; will we be able to have large gatherings next year? Only time will tell. Based on her detachment and disinterest this year, my guess is that by next year, the holidays will be meaningless to her. I look ahead to next Christmas with dread. I don't know how we will make it through. As sad and disheartening as it was for our family this year, I know the road ahead will only get rougher. I suppose my goal for the New Year is to figure out how to cope and manage the despair that comes with losing a loved one.
Ordinarily, I love every single moment of the Christmas season. It is my favorite season of the entire year and I anticipate it for months in advance. I relish in choosing the perfect gifts for each person, in going to the Christmas parties and hearing the joyful sounds of Christmas carols.
That something, is my mom. I miss my mom. In years past, we spent our baking days together, listening to Christmas music while we worked. We always went shopping together, whether it was to shop for the kids or shop for my dad or to pick out presents for other people on our list. Mom loved it when we came to her ward's Christmas party at church. It's always been important to my parents to have all the grandkids together for those kinds of parties and keep our family traditions intact.
As the season wore on, mom seemed disconnected from all the festivities surrounding her. She did not go the Christmas parties at church. She couldn't remember what any of our Christmas goodies were, let alone help bake them. She didn't know who Santa was. She seemed confused on what many of the festivities were about. Aside from the shopping trip to Kmart for my dad, she didn't engage or even attempt to engage in any Christmas shopping. My siblings and I coordinated all of the Christmas meals without any interest or input from my mom (she was just happy that I had assigned her to bring the broccoli-cauliflower salad for Christmas Eve).
"No I didn't know about that."
"Mom, this is the Christmas breakfast that your mom created. We've eaten it every year, you always loved it! Christmas isn't Christmas without it!"
"No I didn't remember about that. I already drank my Slim Fast," she said, as she walked out of the kitchen.
It was the expected response, but still disheartening to say the least. If she's forgotten the traditions of the holiday that we've held so near and dear all these years, who is to say she will even remember the holiday itself next year?
In the past, mom always got giddy at present time. She absolutely loved to pass out presents to her grandkids and delighted in their reactions to what she had picked out for them. This time, mom sat on the couch, staring straight ahead with a blank look on her face. She showed no reaction and no emotion as we each took our turns opening presents. At one point, my niece went up to her to give her a hug and say thank you for the present. Mom had very little response; she didn't hug her back and seemed confused as to why she was hugging her and what she was saying to her.
"Thanks dear. I need this."
Mom sat slightly forward in her seat on the couch and, waving her finger towards the laundry soap, told him very seriously,
"Yeah, that's why I got you that, yeah. I know you like that."
"Perfect. Absolutely perfect," dad said, trying to contain the chuckles.
For as long as I can remember, my dad has always filled out his gift tags to mom using pet names. In fact, they both did it. They would write things such as: "To Mrs. Claus, from Mr. Claus" or "To Dee, From Guess Who" or "To Toots, From Sancho" (don't know if I spelled Toots right). I always thought it was cute that they "spiced" it up and made it fun. This year, mom was confused with the tags on the gifts dad gave.
"Huh? What do you mean, Guess Who? What? Who is this for? Why does it say this, Guess Who?" or "Toots, what? I don't know what this means."
When she opened her gifts, she wasn't overly excited and she was sometimes a bit confused at what she was receiving. I had to explain to her several times that the skirts she opened from me were made by me, as she's been hounding me for months about making her skirts,
"I don't know why you won't ever make me any skirts, you're so talented. I wish you would make me some skirts."
She seemed to like the skirts, though she wasn't overly enthusiastic as she has been in years past.
By the time the rest of the extended family showed up (near 1:00), mom was ready for a nap. She was concerned about people coming over during naptime, but dad kept reiterating that it was Christmas and that people would be over to celebrate. That's what we do for holidays. She went back to her room alone, making no exception for the holiday.
I don't know what the future holds; will we be able to have large gatherings next year? Only time will tell. Based on her detachment and disinterest this year, my guess is that by next year, the holidays will be meaningless to her. I look ahead to next Christmas with dread. I don't know how we will make it through. As sad and disheartening as it was for our family this year, I know the road ahead will only get rougher. I suppose my goal for the New Year is to figure out how to cope and manage the despair that comes with losing a loved one.
Subscribe to:
Posts (Atom)