One Step Forward, Two Steps Back

Mom's eating issues got worse by April. She passed out on the sidewalk, across from the theatre where I was working. I tried to catch her but it didn't work out well. Thank goodness people suddenly appeared and helped me lower her to the ground slowly. She ended up going to the hospital by ambulance. She was down from 140 lbs. at the end of December to 107 pounds. Insanity! I ended up putting her on Hospice for "failure to thrive", which turned out to be the best thing I could have done for her. They took her off a lot of meds, put her on new ones and made sure to add an appetite stimulant. By June, she'd gained enough weight to be taken off of Hospice and now she's back to 134 lbs. She still looks a little too thin, since she was 160 a little over a year ago. It's a relief that she is gaining weight, because she barely had the energy or stamina to walk. I started getting really nervous about taking her out, because I was afraid she'd pass out and/or fall again and I'm just not strong enough to catch her. Now, I feel like I don't have to worry about that as much.

Her memory is getting WAY worse. It seems like it happened quickly over the past couple of weeks. She can't remember anything from a day before. For example, we went to church and to lunch yesterday. She even had her favorite food! Yet, today, she has no recollection of it. She's convinced that she stays home all day every day, even though she goes to the Alzheimer's Center 3 days a week, and I take her to church/lunch on Sundays. She can't even remember the name of the school where she worked during most of my life...not even with hints. I knew her short-term memory would slip, but it's shocking to see the long-term going already. She was just diagnosed in November! She has also lost the names of foods and objects. She'll just say "Those things" or "That thing". It’s really sad to see.

The worst part is that she's begun to get verbally abusive toward me. It's been pretty awful. I know it's the disease, but it's really hard to hear horribly mean things coming from the person who's supposed to love you most...and had been my best friend during most of my adult years. This part's been very hard on me and particularly stressful. I'm still seeing my therapists and taking my anxiety meds, but it's still so painful. This disease BLOWS!!!

Finding the Fun:

1. I love listening to my Mom sing gospels in the car. Strangely, she still remembers most of the words to those.

2. Sometimes, I get to watch Mom dance to her music with her caregiver, J. 

3. Yesterday, she looked fabulously put together for the first time in months. She's been wearing clothes that are not weather appropriate or matching. Usually, I have to coax her to change into clothes that match by making it "fun and fabulous".

Happy Spring

Well, spring has sprung and I'm hoping that things get at least a bit more tolerable for both of us. I had to move my Mom out of the other place. She just didn't adjust at all. It was awful for her. None of the residents were verbal and she felt totally isolated. Also, she and that caretaker never did resolve their issues. It was so clear that they despised each other. It sucked having to move Mom again and have her adjust to another place, but it was the best decision for everyone involved. All of our sanity depended on it.

Mom is actually adjusting pretty well to the new place. It's like night and day. All of the caretakers are friendly and happy, and they really care about their clients. There is laughter and one of the caretakers even waltzed her into the door one day when I brought her back from the Alzheimer's Center. They try to work with me to keep Mom as happy as possible. They even take her on walks and such. It's making a huge difference. The only things are that the disease is progressing so rapidly and she is so paranoid about eating. (Well either paranoid or saying her tummy is sick, which is probably because she's taking a lot of meds and not eating enough to settle her stomach.) Getting her to eat is like pulling teeth. It's awful. I've started buying Ensure and Boost, and even then, she'll only drink vanilla. She says everything she eats is too sweet. If it's not too sweet, then she's paranoid about choking, because it happened a long time ago and that's what stuck in her head.

As for the disease progressing, she doesn't even remember the people she sees 3 days a week at the Alz. Center. She's got a "boyfriend" there, but each time I pick her up, she tells me that she just met him that day. In fact, a few weeks ago, she even hallucinated that they went to his apartment for the day. So random. The Center is locked, so there's no way that happened. She also had a hallucination that someone broke into her room one night, which the caretakers had to deal with. She's on a medication that's supposed to help with those things and the appetite, but I don't think it's working. She's got a psych appointment next week, so we'll see how that goes. Maybe they'll increase the meds.

I'm trying to stay positive, but it's so painful to realize she's slipping away from me. It hurts a lot. It's very hard to deal with, but I'm gonna keep on truckin'.

Finding the Fun:

1.  We took a trip to the library across the street from her home and she absolutely loved being there. We had a great time browsing books and getting her library card.

2. Last weekend, we went to my favorite park with a big lake and the wonder in her eyes while watching the kids play and the geese run around was pretty fantastic.

3.  Mom painted this lovely pot for me at the center and they planted the flower inside. :)

Just Keep Swimming...

It's been a little while since I've blogged. It's been a rough couple of weeks and I've been sick, while trying to get my Mom adjusted to the new place. What a battle. She's just fighting her caregivers tooth and nail on some things, and I know it's because she feels like she's lost all of her independence (which she has). Mornings seem to be the roughest time for her. She has never been one who likes anyone telling her what to do, so it's been a bear...to say the least. She doesn't like that they wake her up at a certain time, doesn't want help in the shower (although it takes her a million years in there, and I can see why they'd want to move her along a bit), doesn't want them to tell her what to wear (although she comes up with some really "special" ensembles lately), etc. It's just exhausting. It's exhausting for her, the caregivers and myself. She calls me in hysterical tears saying how she "can't take it anymore", but then she reminds herself of people in our family who have struggled with things before her. This disease is so awful for everyone involved, and her progression into this stage just seemed to happen so suddenly. According to the chart on www.alz.org, she seems to be between stages 5 and 6. It's to the point where she's realizing that she's losing her sense of freedom and of self, and it's so sad. She told me this morning that she just wants to feel like she's contributing around the house, but they won't let her help with anything. I sent an email to the boss and asked if she could help with some of the simple tasks of housekeeping, so that my Mom can feel like she's useful. Hopefully, that will help.

I just finished the book Learning to Speak Alzheimer's by Joanne Koenig Coste & Robert Butler. I highly recommend it! It really gave me great insight into the disease and provided possible ways to communicating with my Mom. I borrowed The 36 Hour Day by Nancy Mace & Peter V. Rabins, and it was helpful. I didn't enjoy that one as much, because it seemed like more facts & figures to me. There were great ideas for activities with Alzheimer's patients toward the back though.

It's been a really rough couple of weeks, but as Dory Fish says in Finding Nemo, "Just keep swimming...just keep swimming..."

Finding the fun:

1. Actually getting a chance to take Mom to the movies & lunch. Things felt semi-normal again.

2. Taking a walk and enjoying the sky & puffy clouds with my Mom. It's adorable that she thought one of them looked like a puppy.

3. Heath Klondike bar and brownie sundae mental health breaks! ;)

Support Group

Last night, I went to my first meeting at an Alzheimer's Caregiver Support Group. It was definitely a good, but humbling experience. I guess the hardest part was looking around the room and seeing that there was only one person under 40, other than myself. I was listening to everyone talk and they all seem to be taking care of someone 80 and over. My Mom is just barely over 70. I guess it just hurts to know that she's losing her memory so young; and everyone around me had more time with their loved one, as they knew them, than I did. I think it's good to keep going and listen to the stories of other people. Some of them were truly heart-breaking. It was also hard because a lot of the people were in the place I was in 2 years ago (and even 2 weeks ago), where they are trying to get their loved one to move from their home to a facility or care home. 

There was a point in the meeting where the facilitator was talking about Caregiver burnout, guilt and stress. I started crying and found it really hard to stop.

Mom is having a hard time adjusting to her new board and care home. She's definitely butting heads with the weekday Caregiver, who I'll call Serena. I think it's because they are so much alike in personality. They are both strong-willed with strong voices. Also, she likes the place, but it's really hard on her that she can't go out for walks or that she doesn't really have much socialization there. I'm applying for a spot at the Alzheimer's Activity Center, but that takes a little while. You have to get a report from the doctor and such. Thankfully, we've already gotten the TB test. Hopefully, I can get what I need soon. In the meantime, I'll take her out whenever I can.

Tonight, I decided to do what people call a "Pop-In" at the board & care home. That's when you show up when no one knows that you're coming. When I got there, Mom was in tears. She was all upset because Serena put too much spaghetti on her plate, and she couldn't eat it all. She thought Serena was going to yell at her for not eating everything on her plate. She, clearly, needed to be distracted, so I took her out to a local shopping and dining area. We took a nice stroll, then went to a bar & grill and shared a plate of sweet potato fries and got lemonades. It's amazing how happy that made her.

Finding the Fun:

1. Strolling around the stores and window shopping with my Mom. She was so amazed at the things they make now.

2. Finally hearing her truly laugh, after weeks of missing that sound.

Weekend Warriors

There's something to be said when going back to work on a Monday feels like a very welcome vacation. I've spent today sitting at my desk, getting lots of work done, while sipping on what I like to call a "Ghettochino". (Yeah, so it's not exactly the most PC name, but one of my besties and I made up the name for the coffee concoctions we'd make when we were too poor to go to Starbucks. It's simply this: Regular coffee, hot cocoa mix & creamer. The name just made us laugh, back then, and it stuck.) This feels like the most relaxation I've gotten in weeks.

Last weekend, my family & I finally moved my Mom into her new home. The new home that she kept thinking was a "hospital" that she was in because "she's sick". As of yesterday, I still wasn't sure she realized that she'll be living there. All of the personal belongings that we were able to keep were arranged in her new bedroom, but she still didn't quite understand. I feel a tremendous amount of guilt for taking her away from her friends at her former independent living residence, but there was really just no choice in the matter.

Mom ended up in the hospital on Christmas Eve and, again, four days later. It turned out that the medicines they gave her to try to slow the effects of Alzheimer's made her violently ill, caused her realistic nightmares and made her even more nervous than she is already. While I went home to try to take a nap and pick some things up for her, she got dressed and tried to leave the hospital. She was completely disoriented in the hospital setting and thought she was back home...3,000 miles away. At that point, her doctors got a social worker involved and they determined that she could no longer live "alone". The independent living place is for seniors and a lot of people actually live there, but each of them have their own little apartment.

My husband, sister-in-law & I spent all of last weekend (and most of last week) cleaning out the old apartment. Have I mentioned that my mom has hoarding tendencies? Fun and games for the whole family! We worked for days to clean out the old place and make the new bedroom feel like home. We hung artwork and pictures of family. We arranged the closet and furniture so that it'd be as close to "normal" for her as possible. We spent quite a while dealing with an unforeseen sleep number bed fiasco, where the remote was broken & customer support was closed. Fortunately, the in-laws had a remote we were able to borrow, so that Mom would have a place to sleep. In between all of this, I was running my Mom to doctors appointments, waiting for nurses to show up at our house, and taking her to the hospital for more tests that were required to move into her new place. I don't think I ate more than one full meal a day, and I was running on fumes and coffee.

Where's the FUN in all of this?

1. Getting the chance to laugh hysterically at a photo my sis-in-law took of me hanging upside down from a nightstand, while trying to screw in a plug adapter.

2. Seeing my mom lull my cats to sleep with her adorable, yet beautiful singing voice.

3. My mom's hilarious imitations of her new weekend caretaker.

Sometimes, it may be hard to find the fun, but trust me...it's there! ;)

Intro

My name is Carol. Well it's not REALLY Carol, but it's a tribute to the most caring & compassionate person in my life. She made me who I am, and now I need to use that same caring and compassion to guide her through these tough years to come. My mother has Alzheimer's disease and was diagnosed on November 29, 2012. I'd been telling doctors for almost 2 years that something was terribly wrong and it wasn't "Just a little bit of dementia that is normal for her age", as they kept telling me. Finally, I got a doctor who listened and sent us to a memory clinic. I knew in my heart how the evaluation would turn out. Although I don't know much about the disease, I knew what my Mom was suffering from was not normal memory loss due to aging. She, literally, could not handle complex thought anymore. A woman who loved to read was not getting past the first few pages of a book without forgetting what she read. She started forgetting names of people closest to us...my husband, his family, my best friends. She'd try really hard and know who she was talking about, but "couldn't pull their name". Besides, this awful disease tends to run in my family. That terrifies me.

 

When the diagnosis for Alzheimer's came back positive, the small glimmer of hope that maybe I had been over-reacting was destroyed. I was devastated. Instead of the hope of finding some help to recover her memory and basic cognitive skills, I got the sadness of realizing that it'll only get worse. Sure, there are medications to help slow the process, but they don't stop it. Nothing can. That's why I've decided to try and make the best of this journey and "Find the Fun" of the moments we have and of life, in general.

 

And so begins the discovery of the fun moments of our journey...