Tuesday, June 30, 2015

Pill Popper

I remember my mom telling me a story about my twin brother. We were small kids; probably about 3 or 4 years old. Somehow, Joe had climbed up onto the counter and gotten into the Dimetapp cough syrup. I don't remember how much she said that he drank, but I remember her recounting her panic and calling the doctor right away. Luckily, my brother was fine and suffered no side effects from getting into the medicine.

Today, I took my kids to the beach. I was due back at my mom's this evening because I am watching her overnight for my dad. Of course we hit some traffic on the way home and I was running a bit behind. I called my brother-in-law, Melvin, to see if he could come sit with her until I got the kids home and fed; he willingly came over. I didn't even think to tell him to put out mom's nighttime medicine because I knew I'd be there long before it was medicine time. Plus, I thought that my dad was waiting a little longer to put her nighttime medicine out because she was getting a little mixed up and taking them sooner than she was supposed to.

Well...this was almost a dangerous mistake I made. As you probably know from some of my other posts, mom is obsessed with her medicine. She paces around all day asking for it and by 6:00 this evening, when her pill container didn't show up on the counter, she was getting a bit of anxiety. Melvin saw her go into the kitchen; he was sitting on the couch watching TV. He saw her walk around the corner by the fridge and suddenly heard her laughing. When he went to check on her, he found empty bottles of Pamprin and Allegra beside her and a cup in her hand, ready to get water from the fridge. He saw her mouth full of pills and, thankfully, was able to retrieve them out of her mouth...all 31!!

Of course I felt a little panicked when Melvin called to tell me this. Thank goodness she laughed her mischevious little laugh, and thank goodness Melvin got up to check on her! I feel horrible that this happened under my watch (while dad is gone). Needless to say, I packed up everything that even resembled medicine capsules and put them in a safe place for dad to sort through when he gets back.

Friday, June 26, 2015

Summer Days

Summer is here and I've been absent from my blog again. I've been trying to keep a steady balance of keeping the kids busy, helping with my mom (and filling in for caregivers who are gone, including my dad!), working for The DEANA Foundation, keeping up on household responsibilities (a never ending and all consuming task), running to and from swim practice and meets, and working on my new "calling" for church. Oh, and did I mention that my niece-daughter is getting married next month? Yes, I've been planning a wedding as well. My plate is definitely full but those of you who know me, know that I wouldn't have it any other way. At least I never have time to be bored! ;)

A couple of years ago, when I started my Mondays with mom, I wasn't very excited about bringing my kids along with me during their summer break. I was worried that they would be bored or complain about having to give up parts of their vacation to come and sit with grandma. Oh how my perspective has changed! It's true that we've had to turn down some play groups in order to keep our commitment to being with mom on Monday. And I'm sure there are other places they'd rather be. Don't get me wrong-if it were a perfect world, my mom wouldn't be suffering with this horrid disease and, consequently, we wouldn't be spending every Monday caring for her. Rather, we would be planning fun summer outings with her! But over the past couple of years, I have learned to appreciate and value the time that we spend here with her. There are definitely days when they get bored and drive me nuts. But even they are learning to appreciate that Mondays are the day we take care of grandma.

My daughter, Aubrey, is a very compassionate soul. Many people know her feisty, spirited side but don't always get to know this loving, sweet side of her, which I adore. Oftentimes I overhear her talking to her brothers about how much grandma loved them, how she used to be so excited to be a grandma (sentiments that I've shared with her). I hear her and her brothers wishing away the dementia. Sometimes, she will be the leader in picking a chore to help grandpa around his house (not sure if he ever notices).

Lately, I've been observing Aubrey's interactions with my mom and it warms my heart. Every time we come over, she now tells grandma "hi" and gives her hugs. My mom never hugs her back or responds (unless it is to brush her away) but Aubrey understands that it is the disease causing her to behave that way. I encourage her to keep on hugging grandma and telling her she loves her anyway. My boys are not quite as affectionate as my girl, but now and then they will follow big sister's example and give grandma hugs and "I love you's."

This morning, I went into my mom's rom and lay beside her on her bed. I often do this; she usually hides from me underneath her sheet and begins rambling about how dad doesn't support her with money and credit cards, followed by promptings for me to leave her room because,

"You can't see me napping."

I let her ramble. I just like to be next to her. I know everyone says she's not my mom anymore; that the person she once was is gone. And I'm not in denial about it. Yet, sometimes it gives me comfort to just lie beside her and hug her. Sometimes she will push me away, other times she will laugh at me, and many times she will simply ignore my affections altogether. Today, while I was laying beside her, my sweet daughter came into the room and mimicked what I was doing. She laid down next to grandma and gave her a big hug, saying,

"I love you grandma."

For the next little while, we sat beside my mom, giving her hugs and listening to her ramble; Aubrey repeating her "I love you's."

There are many times when I feel like I am messing up on this whole parenting thing. But moments like these, when I see the love my children have developed for their grandma, despite their lack of knowing the "real" grandma, warms my heart and gives me encouragement. I'd give anything to have my mom back; since that isn't going to happen, I continue to look for the opportunities to teach my kids of love, service and compassion. I can't think of a better way to spend our Mondays!

Monday, June 1, 2015

From Daughter to Mom

One of the hardest things about dealing with this disease is coming to terms with the role reversal which it brings. As my mom's abilities become less and less, we have to step in to do more and more for her. With every forced clothing change or face and hand wash after lunch or assistance in the bathroom, I feel like I am ripping her dignity away from her; especially when she tells me,

"I'm your mom, you should support me."

Deep down I know that I am doing the right thing and taking care of her the best that I can. Still, I feel as if I am disrespecting- and in some instances violating-my mom. I can only imagine how my dad must feel.

Today was probably the toughest in this aspect that I've faced in a while. It wasn't just one thing that I had to play mom for today. It was several. It started when I first arrived to her house. Dad had warned me that mom's make-up has gotten dramatically worse over the past few days. I didn't think that was possible but sure enough, mom had globs of make up on her face when I walked in her room. I can assume that she poured a bottle of foundation in her hands and then smeared it all on her face, without rubbing any of it in. It was wet and runny and gloppy. I got some toilet paper and wiped her face in sections, with her swatting my hand away in between each section. I had to wait until she was distracted with brushing her hair to quickly rub some more of the residue off her face.

Mom's been so antsy lately to get out of the house. Unfortunately, she doesn't get out often because she is difficult for a lot of her caregivers to manage. I don't mind taking her out; I usually feel like I can handle it (although it's getting harder and harder when I have my 4 year old sidekick in tow). I knew mom wanted to go to her sister's, so I told her that I would take her. She really wanted to get exercise and I kept repeating to her that she could walk up to the top of the street and then get in my car. The instant that front door was unlocked, mom plowed through the door and sprinted up the street. I quickly got my son and myself in the car and followed after her (thankfully she used the sidewalk this time). By the time she got to the top of the street, her sprint had turned into a shuffle and she was panting quite hard. I urged her to get in the car and she did.

When she was ready to leave her sister's house, she was insistent again on walking. My Aunt lives on a busy street and I am not comfortable with mom walking to the end of the street alone as she tends to walk in the middle of the street now. My Uncle helped me block the door so that I could get a good hold on her arm before she darted out the door. I practically had to drag my mom to the door (she was trying to drag me to the street) and my Uncle and I finally got her in the front seat, buckling her seat and closing the door. But mom is mischevious. As soon as I began walking around the car to get to my side of the car, she unbuckled her seat and darted out the door. My Uncle caught her and I decided it would be safer to put her in the back seat with the child lock on. I tried to get her seatbelt on, but she kept taking it off. Unfortunately, we drove the mile home without her seatbelt fastened, but the child locks prevented her from getting out (she reminded me, also, to lock the windows!!) I forgot to mention that in the process of getting her into the car, she spilled her opened can of root beer (which she keeps in her purse) ALL over my car. Ugh.

Once we were at home and mom went back to her room, I tried to get her to change her pants. She had root beer and jelly all over pants but of course didn't understand the need to change clothes. I knew she'd make a big mess everywhere she went, and especially on her bed, with her pants in that condition so I tried to take control of the situation and change her pants. That meant pulling down her pants and physically fighting her to get them off. This is where I feel as if I'm violating my mom. Sometimes I just don't know if I'm doing the right thing when I have to be forceful with her, especially when it violates her privacy. As I was trying to change her, I made a strange discovery. Mom had on no underwear beneath her pants. I'm not sure how she missed that step in getting dressed, but poor mom forgot to put them on (I have no idea if this is a first or not). Furthermore, I discovered that both her undershirt and her bra were on backwards. I have to admit I chuckled a little bit at that one; sometimes I don't know whether to laugh or cry so to keep my sanity I try to find the humor. After being pushed and kicked at, I lost the battle with changing mom's clothes. She's a lot bigger than me nowadays and while I am pretty good at restraining her from running into the street, I am no match against her at clothes changing time. Thankfully, my dad came home around noon in between appointments and was able to change her. It really amazes me how he is able to just get in and get the job done.

I'm not sharing any of this to embarrass my dear mom; it's not really her I'm writing about. It is the disease. Still, I debated if I should post about this or not (particularly the underwear issue); there are a lot of things that I opt not to write about because it feels too personal. I do feel a little bit of guilt for exposing some other personal situations. But I want people to understand the real challenges of this disease. Dementia isn't only losing memories; it's losing all abilities. It's so much worse than portrayed in movies like "The Notebook". It's an ugly, horrible disease that rips away all dignity.

I have readers who have written to me and shared that my blog has helped them to know what to expect from their loved one who is stage(s) behind my mom; I write this for them as well. It's not easy to see what lies ahead, but knowledge is power and preparations (mentally and physically) help a lot in the management of disease.

And I suppose I also needed to share some of my thoughts for my own therapy. I try to be optimistic and find humor when I can. Overall I'd like to think I'm pretty good at keeping positive and being strong. But today left me feeling really down for some reason and I felt like I needed to write to get some of these feelings off my chest. There are days when I feel like I'm not ready to lose my mom (physically) quite yet, and other days where I wish that she could leave this earth before the rest of her dignity is completely gone. I hate what this disease has done to her. Dementia is a beast.

Monday, May 18, 2015

Happy Birthday Mommy

I'm a week late in posting this, but last Monday (the 11th) was mom's birthday. I wanted to blog about it, but I've been pretty busy and to be honest, I didn't have anything too positive to say. It was a bit of a disappointment, to say the least. We all knew that mom would probably not remember her birthday; afterall, the last birthday she remembered was last summer and she didn't understand Mother's Day (or any other holiday). So you'd think we would be prepared for the disappointment. Nevertheless, we thought-whether she understood her birthday or not-we would take her out to the mall and let her shop to her heart's delight at Bath & Body Works (followed by dinner at her favorite place, Miguel's). Mom has been extremely antsy to get out of the house lately, so we figured she'd jump on the chance to go out to the mall.

We prepped her days in advance of our shopping plans with seemingly no comprehension on her part. Then, on Sunday, she surprised us all by saying that dad was taking her to the mall "tomorrow". We felt optimistic that she has grasped something we had said. But the optimism was short lived. I arrived at her house at 4:00 on her birthday to help my dad get her ready to go to the mall. To make a long and tiring story short, mom couldn't understand what we were trying to get her to do. I brought the kids in to sing Happy Birthday to her, but they may as well have sang it to the wall for the response they got from their grandma. I thought the tune might-just maybe-spark a memory in her. We showed her her bottles of body lotion, stating that we wanted to take her to get more. Nothing. Mom sat on her bed and fixated her attention to the clock, waiting for it to turn to 4:30 which would allow her to go and eat her pb&j sandwich for dinner. We tried for more than half an hour to get her out the door until we finally resigned our efforts. I could tell that my dad felt let down and our moods all shifted from hope and optimism to sadness and defeat.

If there is anything positive that we can say about mom's birthday, it is that we had a show of love and support from our friends and family. We had set up a fundraiser for The DEANA Foundation, honoring it's namesake's birthday, at-where else?-Miguel's Jr. Throughout the day, I received texts, pictures and posts from friends who were dining at Miguel's and wishing my mom a happy birthday. I can't tell you how much that means. Though my mom's memory fades, the memory of the person she once was will forever live on.

(The top picture was taken when I was delivering my first baby in 2005. The second picture was taken on Mother's Day; it's a blurry shot but that's all we can get these days).

Thursday, May 7, 2015

Losing Track Of Time

About a month ago, I wrote a post about another turn that mom had made in this disease. The problem was that mom had been waking up at night completely disoriented, thinking it was day time. Consequently, during the day she slept, thinking it was night. It was after some detective work in my online support groups and a home UTI test that showed up positive that we concluded mom's disruptive routine was the result of a UTI. I wrote my follow up post, stating that the doctor had ordered a UTI test at the lab and in the meantime had prescribed mom some antibiotics because it did sound as if she had a UTI. She started the antibiotics and soon after had gotten back into her regular routine. We were confused, however, when the lab results came back a few days later, negative for a UTI. The doctor figured she must've had some other sort of infection that the antibiotics cleared up, thus getting her back into her routine.

So here we are, a month later, finding ourselves in the same situation, yet again. For the past week mom has been very disoriented with time. She's been up showering at midnight, making peanut butter and jelly sandwiches at 4:00 in the morning and playing on her computer at random times of the day and night. She's been keeping my poor dad up at night. The interesting part is that she doesn't think it's night time during the day. She might think it's dinner time when it's breakfast, but I haven't noticed her (or heard about from my dad or other caregivers) getting in her jammies and sleeping during the day. It's almost as if this past week has been one very long, continuous day for her. Except that she will, on occasion, rinse her hair or put on make-up and do bits and pieces of her routine (only at random times of the day/night). I can't make sense of it because her entire routine is thrown off. It's hard to think that it could be another infection (though it's possible), but more likely just the turn we have been fearing-that mom has lost her sense of time.

Tuesday, May 5, 2015

Senior Citizens

Last week was my dad's birthday. My sister-in-law, Natalie, and I have been joking since last year that we were going to throw him a "Senior Citizen" party, since he was turning 55 and now eligible for the senior discounts. The funniest part about it is that my dad doesn't look (or act) like he's 55 in the least. We thought this was a pretty fun birthday party idea and dad could use a good laugh now and then. We moved forward with our party plans and last weekend, we threw dad his Senior Citizen Birthday Bash. Joe and Natalie drove in from Arizona and we invited our family and close friends to celebrate. The fun people dressed up like senior citizens and we ate good food, laughed, opened presents and played Bingo. It was a really fun night. Here are some fun pictures, just to bring a smile to your face. I laugh every time I look back at the photo of Natalie and me.

With every up there is a down. We had a fun time getting together and celebrating and it was good for dad to get out (we had a caregiver at home with mom). Joe doesn't say much, but I know this visit was especially hard for him because it was the first time that mom didn't know him. Even a few short months ago, at Christmas time, mom connected who her son was-even if she wasn't very social. This time, she couldn't figure out who he was and kept telling him that he needed to leave. Joe told me that on day 3, she finally figured out who he was, but continued to tell him that he needed to go home and shouldn't stay. Other than the usual things mom talks about (her lack of money and credit cards, not being able to drive, etc), Joe wasn't able to understand anything she said. Her speech is very fast and very slurred. If we can pick out a few clear words we are able to piece together what she is talking about. For those who don't see her as frequently (like Joe), it's harder to make sense of what she is talking about.

The next time Joe will be out will likely be in July. Seeing how it took mom 3 days to know who he was, I wonder if she will even connect the dots at all during their next visit :(

Monday, April 6, 2015

The Lost Jacket

We've been experiencing some warm weather here...and it's barely just spring! It's been in the 80's and 90's and mom still insists on wearing her thick, fleece jacket for every second of every day. It's gotten to the point where she has even been sleeping in it. She cannot make the connection between her severe sweating and her jacket. Needless to say, it is a concern for us when she goes on her walks in this heat. She ends up extremely hot and sweaty and refuses to drink water; we are afraid she will overheat herself and pass out. Try as we might, we cannot peel that jacket off of her!

My dad decided that the jacket needs to disappear. He was able to take it away one day, either when mom was showering or when she was changing (I'm not sure which). Of course mom has been frantically searching for her jacket and quite upset that my dad "lost" it. Not to fear. She has found ways to improvise. Each day, we find her with something new worn over her clothes in place of the lost jacket. It might be a dress, dad's t-shirt (worn inside-out and backwards) or dad's jacket. But mom is resourceful and creative!