I read a link today with a scale for stages and progression for dementia. I posted it to my facebook page, but I thought it would be helpful to post it here as well, for those who do not follow my facebook page. I copied it directly from Dementia Care Central; check this website for more information on dementia.
Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS) (also known as the Reisberg Scale):
Stage 1: No Dementia
No Cognitive Decline
In this stage the person functions normally, has no memory loss, and is mentally healthy. People with NO dementia would be considered to be in Stage 1.
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Stage 2: No Dementia
Very Mild Cognitive Decline
This stage is used to describe normal forgetfulness associated with aging; for example, forgetfulness of names and where familiar objects were left. Symptoms are not evident to loved ones or the physician.
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Stage 3: No Dementia
Mild Cognitive Decline
This stage includes increased forgetfulness, slight difficulty concentrating, decreased work performance. People may get lost more often or have difficulty finding the right words. At this stage, a person's loved ones will begin to notice a cognitive decline.
Average duration: 7 years before onset of dementia
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Stage 4: Early Stage
Moderate Cognitive Decline
This stage includes difficulty concentrating, decreased memory of recent events, and difficulties managing finances or traveling alone to new locations. People have trouble completing complex tasks efficiently or accurately and may be in denial about their symptoms. They may also start withdrawing from family or friends, because socialization becomes difficult. At this stage a physician can detect clear cognitive problems during a patient interview and exam.
Average duration: 2 years
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Stage 5: Mid-Stage
Moderately Severe Cognitive Decline
People in this stage have major memory deficiencies and need some assistance to complete their daily activities (dressing, bathing, preparing meals). Memory loss is more prominent and may include major relevant aspects of current lives; for example, people may not remember their address or phone number and may not know the time or day or where they are.
Average duration: 1.5 years
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Stage 6: Mid-Stage
Severe Cognitive Decline (Middle Dementia)
People in Stage 6 require extensive assistance to carry out daily activities. They start to forget names of close family members and have little memory of recent events. Many people can remember only some details of earlier life. They also have difficulty counting down from 10 and finishing tasks. Incontinence (loss of bladder or bowel control) is a problem in this stage. Ability to speak declines. Personality changes, such as delusions (believing something to be true that is not), compulsions (repeating a simple behavior, such as cleaning), or anxiety and agitation may occur.
Average duration: 2.5 years
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Stage 7: Late-Stage
Very Severe Cognitive Decline (Late Dementia)
People in this stage have essentially no ability to speak or communicate. They require assistance with most activities (e.g., using the toilet, eating). They often lose psychomotor skills, for example, the ability to walk.
Average duration: 2.5 years
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This chart is geared more towards those affected by Alzheimer's. It's hard to estimate with my mom exactly where she's at, although UCLA said that she was "moderately advanced". The symptoms and progression differ with each form of dementia, but if I were to guesstimate which stage she is in, I would say between 5 and 6.
If you suspect your loved one has dementia, please visit this site for more information on the disease. Or visit my resources page for more helpful links.
Sunday, August 19, 2012
Thursday, August 16, 2012
Driving Miss Deana
Have you ever been a driver, in your car, with a passenger who tells you every move you need to make? They may tell you to 'turn here', 'move to that lane over there', 'you need to slow down'...
Since my mom has lost her license, she has become the WORST backseat driver that I've had the experience of driving ;) I think a large part of this is her expressing her opinion of what a great driver she is. She is still adamant that UCLA was wrong, and that she's a perfectly safe driver. She reviews all the rules of the road while we are out and about, I'm sure to prove what a good driver she is. She will often make comments,
"See even I don't go fast over the speed limit like you do and like your dad does too".
"I remember what those things are right there, what they mean too, it means to stop. I don't know why they cancelled my driving, I'm still really good and still know all the rules."
"You're going a little bit over the lines too, and your dad does that too, and I don't even do that 'cause I'm still such a really safe driver".
"You need to get over to that lane over there now, you're gonna turn up there at the light so I always get over to the other lane right here" (she will say this miles before we need to turn and becomes insistent that I change lanes right away).
Her memory on how to get to places she visits often is still intact. This is classic with FTD. I don't know whether this is a blessing or a curse. Because she knows exactly how to get somewhere, she insists that you take her way. If you deviate from her course, she becomes really upset.
I learned this, one day, as I was driving her to the pharmacy. The distance from her house to the pharmacy is maybe a mile. There are several different ways to get there; you can take the main street or you can go the back way through the neighborhood. Even going the back way through the neighborhood leaves you with three different options of streets to turn on. On this particular trip, I turned down the "wrong" street.
"Where are you going??! You were supposed to turn that way! It's shorter that way! Why are you going this way??" Her back stiffened, she sat up straight and turned her body toward the window, peering out the window at the course I had strayed from.
I replied, "Mom it's okay. This street will take me there too. Besides, I'm pretty sure this way is shorter."
She was not to be convinced. "It is NOT! That's the best way to go, you're going the long way! You need to go down that other street!"
I tried to calmly assure her that we were fine; either way would get us to the pharmacy and either way we took, it would only be quicker by a matter of seconds. She would not let the issue go. Finally, she hollered at me,
"You're just like your dad!" And with that, she slumped down into her seat and crossed her arms sternly across her chest.
Just as her memory for driving familiar routes has been preserved, so has her memory of her past, particularly her childhood. It amazes me how she can recall events from her childhood clear as crystal, yet her memory of what everyday objects are is rapidly declining. I suppose it is just the area of the brain that has been affected. Semantic memory includes a general knowledge of things, not concerning specific events. Semantic refers to the memory of meanings and understanding. For now, her memory of events are intact, though even those will fade over time.
Mom was born and raised in Riverside. As we drive around town to run errands, she has memories attached to every place we drive by. And she shares each and every memory with us as we drive her around. As I drove her downtown one day, she recalled in some detail a tire shop that was down the road which her friend's family had owned.
"Did I ever tell you about the tire shop down that way? The owner people lived down the street when I was a child. I've thought about stopping by there sometime, but now that I'm no longer a driver I can't unless you would take me by there sometime, but you probably wouldn't want to do that. But I would tell them I'm a Harrington too and they would remember me too. They always really liked me too."
She loves to drive by Overland Street, where her and my dad were neighbors at 13 and 14 years old. There are many memories attached to that part of town, and she loves to reminisce about the good 'ol days. My mom is the second one in from the left, and my dad is the shirtless rebel sitting on the hood of the car ;)
As I drove her to get her hair cut today, she talked the entire time about memories of different places we passed, all stemming back to her childhood. I could hardly get a word in; and even if I did say something, she didn't seem to notice. Most times, I just give the occassional nod and "uh huh" or generic "that's nice" type of comments. She seems content to talk and have someone to listen.
Often times, one memory will spark another. For example, as we drove through La Sierra she remembered a restaurant that once stood on the corner of the intersection which made her remember her ex-boyfriend.
"It was a really yummy Mexican food place too, one of those fast food type places too. And I remember those Mexican boys that I dated too 'cause the Mexican boys always really liked me too. And there was the one I dated before your dad and I got back together and he turned out to be not such a nice person too and he was in that war thing" (the military) "so I'm really glad that we broke up too and that I was with your dad again, because he's so good..." She rambled on for several minutes sharing her memories and thoughts about that time period of her life.
Many of the things we hear, while driving her about, are repeated over and over. I am well versed on the history of her life in Riverside and consequently, much of her childhood. Sometimes, I admit, it gets a little old. But other times, such as today, I remind myself that it's a great thing that she is able to remember parts of her life. The day will come when she no longer remembers. So I remind myself to enjoy the moments that we have, while she is still able to speak and share these meaningful memories of her life.
Since my mom has lost her license, she has become the WORST backseat driver that I've had the experience of driving ;) I think a large part of this is her expressing her opinion of what a great driver she is. She is still adamant that UCLA was wrong, and that she's a perfectly safe driver. She reviews all the rules of the road while we are out and about, I'm sure to prove what a good driver she is. She will often make comments,
"I remember what those things are right there, what they mean too, it means to stop. I don't know why they cancelled my driving, I'm still really good and still know all the rules."
"You're going a little bit over the lines too, and your dad does that too, and I don't even do that 'cause I'm still such a really safe driver".
"You need to get over to that lane over there now, you're gonna turn up there at the light so I always get over to the other lane right here" (she will say this miles before we need to turn and becomes insistent that I change lanes right away).
Her memory on how to get to places she visits often is still intact. This is classic with FTD. I don't know whether this is a blessing or a curse. Because she knows exactly how to get somewhere, she insists that you take her way. If you deviate from her course, she becomes really upset.
I learned this, one day, as I was driving her to the pharmacy. The distance from her house to the pharmacy is maybe a mile. There are several different ways to get there; you can take the main street or you can go the back way through the neighborhood. Even going the back way through the neighborhood leaves you with three different options of streets to turn on. On this particular trip, I turned down the "wrong" street.
"Where are you going??! You were supposed to turn that way! It's shorter that way! Why are you going this way??" Her back stiffened, she sat up straight and turned her body toward the window, peering out the window at the course I had strayed from.
I replied, "Mom it's okay. This street will take me there too. Besides, I'm pretty sure this way is shorter."
She was not to be convinced. "It is NOT! That's the best way to go, you're going the long way! You need to go down that other street!"
I tried to calmly assure her that we were fine; either way would get us to the pharmacy and either way we took, it would only be quicker by a matter of seconds. She would not let the issue go. Finally, she hollered at me,
"You're just like your dad!" And with that, she slumped down into her seat and crossed her arms sternly across her chest.
Just as her memory for driving familiar routes has been preserved, so has her memory of her past, particularly her childhood. It amazes me how she can recall events from her childhood clear as crystal, yet her memory of what everyday objects are is rapidly declining. I suppose it is just the area of the brain that has been affected. Semantic memory includes a general knowledge of things, not concerning specific events. Semantic refers to the memory of meanings and understanding. For now, her memory of events are intact, though even those will fade over time.
Mom was born and raised in Riverside. As we drive around town to run errands, she has memories attached to every place we drive by. And she shares each and every memory with us as we drive her around. As I drove her downtown one day, she recalled in some detail a tire shop that was down the road which her friend's family had owned.
"Did I ever tell you about the tire shop down that way? The owner people lived down the street when I was a child. I've thought about stopping by there sometime, but now that I'm no longer a driver I can't unless you would take me by there sometime, but you probably wouldn't want to do that. But I would tell them I'm a Harrington too and they would remember me too. They always really liked me too."
She loves to drive by Overland Street, where her and my dad were neighbors at 13 and 14 years old. There are many memories attached to that part of town, and she loves to reminisce about the good 'ol days. My mom is the second one in from the left, and my dad is the shirtless rebel sitting on the hood of the car ;)
As I drove her to get her hair cut today, she talked the entire time about memories of different places we passed, all stemming back to her childhood. I could hardly get a word in; and even if I did say something, she didn't seem to notice. Most times, I just give the occassional nod and "uh huh" or generic "that's nice" type of comments. She seems content to talk and have someone to listen.
Often times, one memory will spark another. For example, as we drove through La Sierra she remembered a restaurant that once stood on the corner of the intersection which made her remember her ex-boyfriend.
"It was a really yummy Mexican food place too, one of those fast food type places too. And I remember those Mexican boys that I dated too 'cause the Mexican boys always really liked me too. And there was the one I dated before your dad and I got back together and he turned out to be not such a nice person too and he was in that war thing" (the military) "so I'm really glad that we broke up too and that I was with your dad again, because he's so good..." She rambled on for several minutes sharing her memories and thoughts about that time period of her life.
Many of the things we hear, while driving her about, are repeated over and over. I am well versed on the history of her life in Riverside and consequently, much of her childhood. Sometimes, I admit, it gets a little old. But other times, such as today, I remind myself that it's a great thing that she is able to remember parts of her life. The day will come when she no longer remembers. So I remind myself to enjoy the moments that we have, while she is still able to speak and share these meaningful memories of her life.
Monday, August 13, 2012
The "Oops" Card
Taking little kids out in public can, at times, be very embarassing. Around the time my daughter, Aubrey, turned 3 years old, she began noticing people and different characterstics of their appearance. She was not quiet in voicing what was on her mind.
The first time this happened was when we were sitting in the waiting room of the doctor's office for her baby brother's six week check-up. A very "busty" woman walked in and checked in with the doctor next to ours. Aubrey took one look at this voluptuous woman, and with wide eyes, turned to me and declared,
"Mommy, she has really big boobs!!"
The next incident was the following day, when I took her with me for my own check-up. We were in the elevator, heading up to the third floor of the doctor's office with a very friendly, older, and heavy set lady with a walker. She made some conversation with Aubrey as we went up and when the door opened, we politely let her step out first. As she made her way out, her back end facing us, Aubrey exclaimed,
"Mommy, her butt is so big!"
A few minutes later, after we had checked in with the receptionist, and as I hid myself away from this dear lady in the waiting room to prevent further humiliation, Aubrey noticed a man sitting across from us.
"He is WAY bigger than you, mommy," she said, pointing her tiny finger at the man.
Two days later, we stopped by Burger King for dinner. A young, black girl stood in front of us in line. Aubrey looked at her for a couple minutes, then told me (and the rest of Burger King),
"Mommy, her skin is brown!"
After four incidences in the course of a few days, I was ready to hide away in my house and never take her out in public again. I was shocked and mortified at the words that came out of my daughter's mouth. After each incident, I took the opportunity to explain, as best I could to an innocent three-year-old, that the things she was saying were not appropriate and could hurt people's feelings. Try as I might, the fact of the matter is simple: kids have no filter!
People with dementia are very much the same: they have no filter. At least this is the case with my mom's form of dementia. Whatever is on their mind is on their tongue. The difference with children and with dementia patients is that children are teachable. Eventually they learn how to behave. Lucky for me, my daughter is smart; after this long and embarassing week of incidences, we had some talks and she came to understand that those comments make people feel sad or embarassed. A dementia person will not understand this concept, no matter how hard you try to teach them how to behave properly!
The more the disease progresses, the worse it becomes. I find myself (as does my family) tense up a little bit when we take her out because we don't know what-off-the wall thing she will say or do. A few weeks ago, I took her to the grocery store. I, of course, picked the shortest line to check out. Mom was disappointed because she loves Beverley, a cashier who has been there for years. Not to worry, though. She made sure to call to Beverley from across the store (as everyone in her line observed).
"Beverley! My spiritual sister!" She continued after she checked out and quickly walked over to Beverley, "I really believe that you are my spiritual sister, too. In my religion, we're all brothers and sisters too so you are like my sister spiritually."
Sometimes, while we are checking out, she will bring up random topics or completely ignore the cashier's questions or conversations altogether. While she can still communicate what is on her mind, she can't comprehend much of what is being said to her. Most times, I find myself speaking for her when a cashier or sales representative is asking her a question. I think most times people can figure out that there's something not quite right. Other times, however, I get the look that says, "I wasn't talking to you." This happened one day at Kohl's. Mom was trying to use her coupons as she checked out. She had two coupons: one was a 15% off when using her Kohl's card, the other was 20% off a purchase of $100 or more without using the Kohl's card. Of course, she wanted to use the 20% off, but she didn't comprehend that she couldn't use her Kohl's card for it (and she was adamant to use the Kohl's card). Aside from the card issue, mom was using a combination of gift cards along with the credit card, so her total after the gift card was less than $100. Therefore, she couldn't use the 20% off coupon at all. The cashier tried explaining this to her, but mom couldn't make sense of what she was saying. I then tried explaining it to her myself with the same result. I finally turned to the cashier and told her that she would just use the 15% off coupon with her Kohl's card. The cashier ignored me and turned back to my mom, seeming a little flustered that she wasn't "getting it". I finally interjected and said in a low voice,
"She doesn't understand what you're saying, she has dementia."
The cashier's attitude immediately changed and she turned her attention to me, listening to what I had prompted her to do. She was patient with mom through the rest of her transaction.
Even though my mom didn't hear or understand what I was saying to cashier, I still hate to say it in front of her. Who knows what she hears and understands deep down? And I don't want her to feel embarassed or stupid.
In Susan's book (I've mentioned her book before, you can read that post here), she talks about the "oops card". Basically, it's a card that you hand to people while out with your loved one explaining that they have a disability and can't understand you. After this and several other incidences, my family and I decided it was time to make our own "oops" cards.
There are a few ways to skin a cat. The suggestion Susan made in her book was to go to the association for frontotemporal lobe dementia. There are templates that you can use and print them out on cards at home, using premade cards, such as these:
The other option is to order your own through a printing company. I used vistaprint, since they are free (aside from shipping). And they also have cute templates :) Our cards read,
"Please be patient with my companion. She has a brain disease called semantic dementia, which makes it difficult for her to communicate and understand what you are saying."
I feel like this is a less embarassing approach for my mom while we are out, to help other people to understand and be patient with her while we interact with them. The only regret I have is not addressing the behavior aspect on the card. One of the template suggestions from the AFT is to write "(s)he is not drunk or on drugs, (s)he has a disease..." With the embarassing behaviors, and stares from onlookers, this bit of information might have been helpful to include on the card. Oh well...next time.
My hope is by handing out these cards, people will be more patient with my mom. But along with that, I hope to raise awareness on this disease. How many times are we out in our daily lives and see people acting a little "off"? Do we ever stop and wonder if there might be something more to their strangeness, such a disease that alters their behavior? Knowledge is power. As is awareness.
So this whole post got me to thinking...I wonder if I can get these cards made up for my kids??? ;)
The first time this happened was when we were sitting in the waiting room of the doctor's office for her baby brother's six week check-up. A very "busty" woman walked in and checked in with the doctor next to ours. Aubrey took one look at this voluptuous woman, and with wide eyes, turned to me and declared,
"Mommy, she has really big boobs!!"
The next incident was the following day, when I took her with me for my own check-up. We were in the elevator, heading up to the third floor of the doctor's office with a very friendly, older, and heavy set lady with a walker. She made some conversation with Aubrey as we went up and when the door opened, we politely let her step out first. As she made her way out, her back end facing us, Aubrey exclaimed,
"Mommy, her butt is so big!"
A few minutes later, after we had checked in with the receptionist, and as I hid myself away from this dear lady in the waiting room to prevent further humiliation, Aubrey noticed a man sitting across from us.
"He is WAY bigger than you, mommy," she said, pointing her tiny finger at the man.
Two days later, we stopped by Burger King for dinner. A young, black girl stood in front of us in line. Aubrey looked at her for a couple minutes, then told me (and the rest of Burger King),
"Mommy, her skin is brown!"
After four incidences in the course of a few days, I was ready to hide away in my house and never take her out in public again. I was shocked and mortified at the words that came out of my daughter's mouth. After each incident, I took the opportunity to explain, as best I could to an innocent three-year-old, that the things she was saying were not appropriate and could hurt people's feelings. Try as I might, the fact of the matter is simple: kids have no filter!
People with dementia are very much the same: they have no filter. At least this is the case with my mom's form of dementia. Whatever is on their mind is on their tongue. The difference with children and with dementia patients is that children are teachable. Eventually they learn how to behave. Lucky for me, my daughter is smart; after this long and embarassing week of incidences, we had some talks and she came to understand that those comments make people feel sad or embarassed. A dementia person will not understand this concept, no matter how hard you try to teach them how to behave properly!
The more the disease progresses, the worse it becomes. I find myself (as does my family) tense up a little bit when we take her out because we don't know what-off-the wall thing she will say or do. A few weeks ago, I took her to the grocery store. I, of course, picked the shortest line to check out. Mom was disappointed because she loves Beverley, a cashier who has been there for years. Not to worry, though. She made sure to call to Beverley from across the store (as everyone in her line observed).
"Beverley! My spiritual sister!" She continued after she checked out and quickly walked over to Beverley, "I really believe that you are my spiritual sister, too. In my religion, we're all brothers and sisters too so you are like my sister spiritually."
Sometimes, while we are checking out, she will bring up random topics or completely ignore the cashier's questions or conversations altogether. While she can still communicate what is on her mind, she can't comprehend much of what is being said to her. Most times, I find myself speaking for her when a cashier or sales representative is asking her a question. I think most times people can figure out that there's something not quite right. Other times, however, I get the look that says, "I wasn't talking to you." This happened one day at Kohl's. Mom was trying to use her coupons as she checked out. She had two coupons: one was a 15% off when using her Kohl's card, the other was 20% off a purchase of $100 or more without using the Kohl's card. Of course, she wanted to use the 20% off, but she didn't comprehend that she couldn't use her Kohl's card for it (and she was adamant to use the Kohl's card). Aside from the card issue, mom was using a combination of gift cards along with the credit card, so her total after the gift card was less than $100. Therefore, she couldn't use the 20% off coupon at all. The cashier tried explaining this to her, but mom couldn't make sense of what she was saying. I then tried explaining it to her myself with the same result. I finally turned to the cashier and told her that she would just use the 15% off coupon with her Kohl's card. The cashier ignored me and turned back to my mom, seeming a little flustered that she wasn't "getting it". I finally interjected and said in a low voice,
"She doesn't understand what you're saying, she has dementia."
The cashier's attitude immediately changed and she turned her attention to me, listening to what I had prompted her to do. She was patient with mom through the rest of her transaction.
Even though my mom didn't hear or understand what I was saying to cashier, I still hate to say it in front of her. Who knows what she hears and understands deep down? And I don't want her to feel embarassed or stupid.
In Susan's book (I've mentioned her book before, you can read that post here), she talks about the "oops card". Basically, it's a card that you hand to people while out with your loved one explaining that they have a disability and can't understand you. After this and several other incidences, my family and I decided it was time to make our own "oops" cards.
There are a few ways to skin a cat. The suggestion Susan made in her book was to go to the association for frontotemporal lobe dementia. There are templates that you can use and print them out on cards at home, using premade cards, such as these:
The other option is to order your own through a printing company. I used vistaprint, since they are free (aside from shipping). And they also have cute templates :) Our cards read,
"Please be patient with my companion. She has a brain disease called semantic dementia, which makes it difficult for her to communicate and understand what you are saying."
I feel like this is a less embarassing approach for my mom while we are out, to help other people to understand and be patient with her while we interact with them. The only regret I have is not addressing the behavior aspect on the card. One of the template suggestions from the AFT is to write "(s)he is not drunk or on drugs, (s)he has a disease..." With the embarassing behaviors, and stares from onlookers, this bit of information might have been helpful to include on the card. Oh well...next time.
My hope is by handing out these cards, people will be more patient with my mom. But along with that, I hope to raise awareness on this disease. How many times are we out in our daily lives and see people acting a little "off"? Do we ever stop and wonder if there might be something more to their strangeness, such a disease that alters their behavior? Knowledge is power. As is awareness.
So this whole post got me to thinking...I wonder if I can get these cards made up for my kids??? ;)
Thursday, August 9, 2012
9 Years Ago Today...
Exactly 9 years ago today, I married my best friend and the love of my life, Jeff. Over the past few weeks, I've been reflecting back to that time of my life; back when life was at an all-time high, back before I had lost any of my grandparents, back before my mom was sick. Life was simple. Life was happy. Life was good.
It brings tears to my eyes to see pictures of my mom at that time and remember what a great friend and mother she was. She truly was one of my best friends. I could talk to her about anything. I am grateful that I have had her as my mother. Not a day goes by that I don't miss her for the way she once was.
Life is precious. In an instant, everything can change. You never know when your time will end (or the time of someone you love). Take advantage of every day. Don't put off for tomorrow what you could do today. Make those memories now. Don't let the day pass without telling those you love how you feel about them. Forgive; life is too short to hold a grudge. Live without regrets.
Monday, August 6, 2012
"She's Real Happy With Me"
Last night, at our family dinner, friendship seemed to be the theme of all conversations with mom. She had gone to church earlier in the day, which she had missed the past two weeks in a row (due to her "severe pains and fatigue") and was on cloud 9. Mom was smiling and chatting a mile a minute all evening long about the many people who talked to her at church throughout the day.
As she enthusiastically recalled her visits with us, she kept playing with her hair, pulling on the ends and tucking it behind her ears. She took occassional breaks from fidgeting with her hair to rub her hands together while she spoke; she does this frequently when she talks. Maybe it's a nervous habit.
She always recounts her visits with my mother-in-law at church.
"Ginger is always so good to me too. She's always real lovable and happy to see me too. She's happy with me too and she's always good to me too."
Then onto an encounter with another long time family friend,
"That one woman who we've known for many, many years...the one who looks so much like my sister...she was so happy to see me too. She's so good to me when she sees me too, she's real happy with me. And she was real happy when I sang her that song," she breaks into a quick song, "Jesus said love everyone, treat them kindly too...she was really happy and smiling when I sang her that song too."
"Sister Najarro too really loves me too. She was real happy to see me too. She's always so good to me too."
She talked about some other friends who complimented how nice she looked, or had other sweet words to say to her. She couldn't remember the names of some of them. But she was still beaming at the love that everyone had shown her throughout the day.
"I'm just glad that people still love me, even though I'm changing so much, but they're still real happy with me."
Sometimes, when dealing with a person with dementia, we might be apprehensive on approaching that person. We may think "they probably don't remember me anyway, so what is the point?" Maybe we don't know what to say, and as human nature would have it, we often times do not want to venture out of our comfort zone. Maybe we don't want them to feel uncomfortable by watching their struggle to remember who we are.
But I am here to say that we can still have a positive effect on those around us who suffer from this terrible disease. Maybe they don't remember us. Maybe it does feel awkward and maybe we don't know exactly the right thing to say. Even just a simple "hello" with a smile can mean the world to a person with dementia. They need to know that they are loved, and not forgotten. I truly believe that even if they cannot express this outwardly, deep down, inside this broken body, is that person that we all once knew and loved. That person deep inside needs to be remembered and loved.
My heart is full of deep gratitude and love for those of you out there who continue to show friendship and love to my mom. Know that your kind words and sweet smiles do make a difference, to my mom and to our family!
Friday, August 3, 2012
What's For Dinner? Part 2
[This is a continuation of my blog written yesterday. To read that post first, click here].
A couple of years ago, I realized how tired I had become of the age old question, "What's for dinner?" It wasn't so much the kids that bothered me with this question, it was myself having to ask this question day in and day out that became tiresome. I devised a solution to my problem: a dinner calendar. Before baby #3 came along, I was did fairly well creating a one month dinner calendar and getting all of my grocery shopping done at the beginning of the month. Nowadays, I am lucky to get two weeks planned out at a time. However, it has helped a lot to plan these meals out in advance. As I find new recipes that I want to try throughout the week or month, it's written on my calendar and I am able to formulate a grocery list much more easily and quickly.
With my mom's lack of dinner planning, I thought this system might be helpful for her. When I first brought the idea up to her, she was not happy (to say the least).
"I don't like you guys picking me on me. I would never treat my mother like this. I would never do that."
I realized that she felt somewhat under attack, which was not my intention. So I put my arms around her (which I think threw her off a little bit), and told her,
"Mom I'm not trying to pick on you. I'm trying to help you because I love you. I know sometimes you have a hard time thinking of what to cook, so I thought this might be helpful for you. I do it, too, and it helps me out a lot. I'm just trying to help you."
She had no response to this, but she eventually settled down and followed the dinner calendar (but not before she called her sister to complain about how we were all picking on her).
So, at the beginning of each month, I sit down with mom and plan out a calendar for the month (or at least a week or two at a time). From there, we make out a grocery list with the ingredients she will need for her meals and I usually take her shopping to find what is on her list. We always leave Sundays open for family dinners, one day a week for leftovers and sometimes schedule them to come eat at my house. We do a mixture of simple, frozen meals (such as frozen pizza with fresh fruit) and other home cooked meals. It is repetitive...there are a lot of taco and pasta nights, but at least there is something on the calendar. I try to help her plan out fresh fruits and veggies to eat as well, so it's more than just frozen mixed vegetables every night.
I admit, I've been slacking a little on the calendar this summer. With five kids home all day long, and vacations and many day trips, I haven't been as dilligent in my or my mom's calendar. The kids are back in school next week and I am ready to get back into my routine and get mom back on track with her calendar.
Some family members have asked about bringing meals in, just to help out. At this point, the dinner calendar seems to be working. I think it is beneficial to keep her doing her normal tasks for as long as possible. There will come a time when the dinner calendar will no longer be effective. At that time, we will come up with a Plan B. But for now, this system seems to be working.
On a side note, if you like this system, you can get your own calendar white board from Amazon. It is magnetic, can hang on your fridge, and can be changed out monthly. There are several to choose from, but this is similar to the one I have:
A couple of years ago, I realized how tired I had become of the age old question, "What's for dinner?" It wasn't so much the kids that bothered me with this question, it was myself having to ask this question day in and day out that became tiresome. I devised a solution to my problem: a dinner calendar. Before baby #3 came along, I was did fairly well creating a one month dinner calendar and getting all of my grocery shopping done at the beginning of the month. Nowadays, I am lucky to get two weeks planned out at a time. However, it has helped a lot to plan these meals out in advance. As I find new recipes that I want to try throughout the week or month, it's written on my calendar and I am able to formulate a grocery list much more easily and quickly.
With my mom's lack of dinner planning, I thought this system might be helpful for her. When I first brought the idea up to her, she was not happy (to say the least).
"I don't like you guys picking me on me. I would never treat my mother like this. I would never do that."
I realized that she felt somewhat under attack, which was not my intention. So I put my arms around her (which I think threw her off a little bit), and told her,
"Mom I'm not trying to pick on you. I'm trying to help you because I love you. I know sometimes you have a hard time thinking of what to cook, so I thought this might be helpful for you. I do it, too, and it helps me out a lot. I'm just trying to help you."
She had no response to this, but she eventually settled down and followed the dinner calendar (but not before she called her sister to complain about how we were all picking on her).
So, at the beginning of each month, I sit down with mom and plan out a calendar for the month (or at least a week or two at a time). From there, we make out a grocery list with the ingredients she will need for her meals and I usually take her shopping to find what is on her list. We always leave Sundays open for family dinners, one day a week for leftovers and sometimes schedule them to come eat at my house. We do a mixture of simple, frozen meals (such as frozen pizza with fresh fruit) and other home cooked meals. It is repetitive...there are a lot of taco and pasta nights, but at least there is something on the calendar. I try to help her plan out fresh fruits and veggies to eat as well, so it's more than just frozen mixed vegetables every night.
I admit, I've been slacking a little on the calendar this summer. With five kids home all day long, and vacations and many day trips, I haven't been as dilligent in my or my mom's calendar. The kids are back in school next week and I am ready to get back into my routine and get mom back on track with her calendar.
Some family members have asked about bringing meals in, just to help out. At this point, the dinner calendar seems to be working. I think it is beneficial to keep her doing her normal tasks for as long as possible. There will come a time when the dinner calendar will no longer be effective. At that time, we will come up with a Plan B. But for now, this system seems to be working.
On a side note, if you like this system, you can get your own calendar white board from Amazon. It is magnetic, can hang on your fridge, and can be changed out monthly. There are several to choose from, but this is similar to the one I have:
Thursday, August 2, 2012
What's For Dinner? Part 1
When I was growing up, my mom was a master in the kitchen. We rarely ever ate out; mom had a nice meal on the table every night and we ate together as a family. She acquired her cooking skills from my grandma, who was an amazing cook. I can still remember staying at grandma's house, baking with her in the kitchen while she listened to Melinda Lee's cooking show on the radio. As a kid, I thought she almost famous when she was featured (and spoke) on Melinda's cooking show. I was proud when I saw her name, picture and recipes in newspapers and magazines, and impressed with her blue ribbon from the Orange County Fair for her original "Avocado Cream Pie".
All that to say, my mom learned from the best. I was always proud to bring friends home and show off mom's home cooking. I'm pretty sure that's why my husband kept coming back night after night while we were dating...he was a bachelor who loved a good home cooked meal.
Over the past few years, her cooking has become less and less. At first, we thought it was just the "empty nest" phase-no kids at home to cook big meals for anymore. But eventually, our Sunday family dinners (which are a big deal in our family) were becoming less thought out, and very repetitive. We started joking around when Sundays would roll around,
"What will it be tonight, spaghetti or tacos?"
Those became the only two things mom would cook.
Another big change was her motivation to cook. Once passionate about cooking, she started losing interest. Her taste for the foods she was once loved were becoming obsolete. She used to always make the Sunday meals; over the past couple of years, mom has been doing less and less hosting of the Sunday meals, and my dad and I have become the coordinators and chefs of our family dinners.
One time, a few months before her diagnosis, we decided it was time to change things up. We told her we wanted her to make her famous crockpot pot roast.
"Pot roast...what is pot roast?"
After a very detailed description of what pot roast is, where you buy it in the supermarket, and how you cook it, mom finally remembered. The next night, at family dinner, we noticed she had put lima beans in the roast. Somebody made a comment about the lima beans,
"It's different, but I kinda like it," I believe was the comment.
"What are you talking about? Are you talking about those green beans? You told me to put in green beans," she replied defensively.
We didn't want to make her feel stupid, so we tried to explain nicely that what she used wasn't green beans, they were lima beans. She was upset and insistent that they "are too" green beans. She pulled the empty can of lima beans out of the trash can and showed them to us.
"See? They are too green beans!"
As she took a closer look at the fine print, she saw the words "lima beans". This upset her even more.
"What are green beans?? I'm so stupid. I don't know why my brain won't work right!"
How had my mom, who once ruled the kitchen, come to this point, where she couldn't tell the difference between a lima bean and a green bean? We tried to calm her down and reassure her that it was okay and that she hadn't ruined the meal.
"It's fine mom, they aren't green beans but they taste good! It's okay...you're not stupid...it was just a mistake...they are green..."
I felt so bad for her. I felt sad that she thought she was stupid. And I felt confused with what was happening to her, that she couldn't even distinguish differences in food anymore.
It was somewhere around this time, that I really began to realize that she was going to need more help in her meal planning and cooking. It wasn't this incident alone, but a series of events that had led up to this conclusion. A big part of this realization came from my dad. It was frustrating for him to go to work all day long (he is a tilesetter, so he is literally "breaking his back" at work all day) and come home to an empty dinner table. Although we knew something was "off" with my mom, we still hadn't gotten a diagnosis by this point and he was becoming increasingly frustrated with her lack of effort to prepare the meals, or do anything else for that matter. Of course, by the time we had received a diagnosis, we began to realize that this was beyond her control and that she would definitely need some extra help in this task.
And....because I am a busy mom, and this is the last week of summer break for my kids...I am going to have to end my post here. The kids are ready to go swimming! Tune in tomorrow for part 2 of this post, which is our solution to the "what is for dinner?" dilemma.
All that to say, my mom learned from the best. I was always proud to bring friends home and show off mom's home cooking. I'm pretty sure that's why my husband kept coming back night after night while we were dating...he was a bachelor who loved a good home cooked meal.
Over the past few years, her cooking has become less and less. At first, we thought it was just the "empty nest" phase-no kids at home to cook big meals for anymore. But eventually, our Sunday family dinners (which are a big deal in our family) were becoming less thought out, and very repetitive. We started joking around when Sundays would roll around,
"What will it be tonight, spaghetti or tacos?"
Those became the only two things mom would cook.
Another big change was her motivation to cook. Once passionate about cooking, she started losing interest. Her taste for the foods she was once loved were becoming obsolete. She used to always make the Sunday meals; over the past couple of years, mom has been doing less and less hosting of the Sunday meals, and my dad and I have become the coordinators and chefs of our family dinners.
One time, a few months before her diagnosis, we decided it was time to change things up. We told her we wanted her to make her famous crockpot pot roast.
"Pot roast...what is pot roast?"
After a very detailed description of what pot roast is, where you buy it in the supermarket, and how you cook it, mom finally remembered. The next night, at family dinner, we noticed she had put lima beans in the roast. Somebody made a comment about the lima beans,
"It's different, but I kinda like it," I believe was the comment.
"What are you talking about? Are you talking about those green beans? You told me to put in green beans," she replied defensively.
We didn't want to make her feel stupid, so we tried to explain nicely that what she used wasn't green beans, they were lima beans. She was upset and insistent that they "are too" green beans. She pulled the empty can of lima beans out of the trash can and showed them to us.
"See? They are too green beans!"
As she took a closer look at the fine print, she saw the words "lima beans". This upset her even more.
"What are green beans?? I'm so stupid. I don't know why my brain won't work right!"
How had my mom, who once ruled the kitchen, come to this point, where she couldn't tell the difference between a lima bean and a green bean? We tried to calm her down and reassure her that it was okay and that she hadn't ruined the meal.
"It's fine mom, they aren't green beans but they taste good! It's okay...you're not stupid...it was just a mistake...they are green..."
I felt so bad for her. I felt sad that she thought she was stupid. And I felt confused with what was happening to her, that she couldn't even distinguish differences in food anymore.
It was somewhere around this time, that I really began to realize that she was going to need more help in her meal planning and cooking. It wasn't this incident alone, but a series of events that had led up to this conclusion. A big part of this realization came from my dad. It was frustrating for him to go to work all day long (he is a tilesetter, so he is literally "breaking his back" at work all day) and come home to an empty dinner table. Although we knew something was "off" with my mom, we still hadn't gotten a diagnosis by this point and he was becoming increasingly frustrated with her lack of effort to prepare the meals, or do anything else for that matter. Of course, by the time we had received a diagnosis, we began to realize that this was beyond her control and that she would definitely need some extra help in this task.
And....because I am a busy mom, and this is the last week of summer break for my kids...I am going to have to end my post here. The kids are ready to go swimming! Tune in tomorrow for part 2 of this post, which is our solution to the "what is for dinner?" dilemma.
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