Anica

Senior center

Today’s mom’s caregiver took her to check out the local senior center. I’ve brought it up to her before but she had been hesitant because “the people are so old”. But I had the idea that if her beloved caregiver took her, she might be open to it- and it worked!

She didn’t love the arts and crafts, but she is excited to go back as soon as tomorrow for chair yoga. She’s been complaining she is bored and lonely, so I’m hopeful this could be a really positive activity for her as much as she wants to go. They also offer lunch and snacks and transportation.

I’m working on arranging a ride for her tomorrow, so hopefully, we can get started really soon!

Dinner time

This week, dinners have been really tough for mom. She has Meals on Wheels frozen meals 5 nights a week, which she has typically cooked in the oven. This week, the steps (preheat, put meal in oven, set timer) seemed to evade her.

One night, the oven “never preheated” and someone when she cooked the meal it was both burnt and cold and another she left the food in super long (though it didn’t seem to overcook). Last night, I tried having her have her Soylent meal supplement drink before dinner, and that seemed to help. I am wondering if by the time it’s time for dinner, she is already hungry and maybe dehydrated, which makes her foggier. I’m also considering getting her a different timer, which may be easier to set than the one on the oven itself.

I’ve been quick to temper this week, and trying to coach her via phone has led to some conflict between us. The oven is not quite in camera sight, and it’s really hard to tell if the oven is on, timer is set, etc.

Tonight, I’m going to go over with Ella after work and make a meal together. I usually spend the day Saturday and am hoping to make Tuesday night dinner a regular standing event to build in more company for her since she often recently talks about feeling bored and lonely.

Tonight, there is a storm supposed to be brewing, but hopefully, the drive will go smoothly, and we can enjoy some family time.

Packaging woes

One of the first signs something was happening cognitively for my mom was that I noticed she started really struggling with packaging, putting things together, and other small little daily tasks.

At first, I was so frustrated by this (my own resistance to the reality of what was going on), but now it’s just the norm.

Working Daughter support group

Every Saturday morning, I attend the Working Daughter Zoom support group, which has been an immense support and warm community to fall into. There are about 7 of us who attend regularly as well as other folks who come and go. I look forward to it every week.

When I initially started looking for a support group, I found so many Alzheimers Caregiver groups are made up of folks who are caring for their spouses and who are already retired.

While I am the youngest in the Working Daughter Zoom group and the only one with a young child it is still so helpful to talk with others who are primarily caring for their parent and at a more similar stage of life. There is also a much larger Facebook community where folks network and post.

This community has been so resourceful, warm, compassionate, and kind. I feel so fortunate to have found it.

Neurology update

Mom had a neurology appt today for a 6 month follow-up from her original Dementia diagnosis as well as related to pain management for facial pain condition.

Super annoyingly, I arranged a Liftline for her, took the afternoon off work, and coached her through getting ready for the appointment. When I was on my way, I got a call from the office saying my mom was asking if I could give her a ride home. Turns out the Liftline dropped her early, and the office offered her an earlier appointment because there had been a cancellation. My mom didn’t remember I was coming despite that we had discussed it several times. So even though I was 30 mins early for her appt, I missed it! So frustrating- I may have screamed in the car.

But I read over the notes, and my mom’s score surprisingly went up on the mental status exam from 23/30 to 25/30. I wish I could have been there to discuss recent shifts in her progression like the word salad and day/night confusion and hallucination, but the plan from the neurologist is just to continue forth and come back in a year.

The lack of any real testing or care planning is sort of astounding. That they would just treat a patient with dementia without even trying to involve a caregiver is wild to me, especially since they know me and that I care for her.

On the plus side, we had a nice lunch while we waited for Liftline to take mom home. On the downside, I was pretty frustrated and angry the rest of the day and was short fused with everyone, which always feels awful.

Next time, I will know to call ahead and make sure they don’t start any appointments without me. Lesson learned.

Moment of gratitude

I’m so grateful that amidst the chaos of this time, one thing I don’t have to worry about is childcare. I am so fortunate to have a wonderful friend who spends time with Ella while I work.

She provides loving care and is so thoughtful about providing her with activities, explorations, and lots of fun. I get to live vicariously though the photos she sends me every day.

A couple from this week…

Alz can’t be the crisis

I have noticed that whenever my mom has an increase in feeling more confused or having more difficulty speaking, I feel myself going into crisis mode and almost into a state of panic. I think the lack of a long-term care plan is part of that panic, and I’m sure it is grief as well.

Lately, in an effort to be less stressed and panicked, I have been practicing re-framing that stress and asking what the actual crisis is – is she in actual danger? Is she eating? Dressed? Practicing decent hygiene? Always, so far, the answer to these is “yes.” I’m trying to teach myself that being confused in and of itself isn’t a crisis and that, for sure, she IS going to be confused. I can not live the next however many years in crisis.

I think doing this has helped me try to respond more calmly and patiently and attend to the actual needs rather than just being upset and panicked constantly. Sort of a form of mindfulness.

Tough weekend

This weekend, I had some nice moments- a good family visit together and lots of social time, but I always find that when my mom has a harder time it almost always takes me right out of any positive mood.

I have been watching this week as things have been a bit up and down, but it’s definitely concerning. It seems like there is lots more confusion.

Today, I was out with friends and realized my mom had left the house around noon and hadn’t come back (it was 3 when I noticed). She came back shortly after 3, and when I spoke with her, she said she had gone to the HOA Clubhouse and had gotten trapped inside and couldn’t get back out. I have no idea what to make of this. Eventually, someone came and was able to let her out. She also seemed to have left a set of keys there and had dissasembled her other key set. And later I noticed she was wearing 2 pairs of jeans. Plus, she burned her dinner and was generally having trouble with language.

In these moments, I feel so distressed. I want to help her, but I don’t know what is a sustainable way to do so. Do I disrupt Ella’s routine and start staying there? What about my work and how do I take care of myself in that context? Do I hire someone? Who? For how many hours?

I’m meeting with an elder law attorney next month and hope to develop a care plan. It’s so depressing imagining a future where it just gets progressively harder.

Meal prep for mom

My mom is no longer able to cook more than a step or two (heating up something frozen, pan frying some veggies) so I’ve taken to freezing some meals for her when I can.

She gets frozen dinners from Meals on Wheels 5 days a week, so she needs something the other 2. This week I made some chili for her.

In the daytime, she follows a simple routine – instant oatmeal for breakfast, which I buy in bulk and get as am Amazon subscription and a sandwich for lunch. It makes shopping easy, and having a routine seems to help her follow through on eating. She also gets Soylent meal replacements since she doesn’t get a lot of calories/nutrition during the day.

The heavy woman

Mom calls me at 11. I am excited to see she has finished her breakfast – a hint of normalcy. She asks me to buy her some bread. Then she asks, “Who was the heavy woman who was in my house?”

She was up basically all night again. Even after I coached her through dinner and she appeared to be in pajamas and headed to bed when I turned it. Now, she has either clearly been dreaming or maybe hallucinating. She isn’t that worried about it but just keeps wondering about it – “I thought maybe she was someone you brought in to clean.”

I convince her to take a nap, though I’m not sure she could stay awake if she wanted to at this point. At least no word salad today.

It’s my lunch, and I have a longer break, so I am decompressing with a book. I’ve ordered some groceries and roses to be delivered. It’s Valentine’s Day. I’ll check in again later.