Anica

Ride for Alzheimer’s

In March, I impulsively (as is my nature) signed up for the Ride for Alzheimer’s and completed the 200 Mile Challenge successfully!!

I have been trying to prioritize movement as a vital form of self care for me and when I saw the invitation to join I thought, “Why not?!” I didn’t really anticipate people would donate when I posted the fundraiser link but ended up raising over $600 in donations!

Having a goal in mind helped me to push and biking in the evenings on my stationary bike has now become a regular habit- and one I’m grateful for!

I raised $25 more after this screenshot was taken!

Putting things in place

I’ve generally been feeling some reprieve from the intensity of overwhelm I had been feeling over winter. The days are longer, there’s more time to get things done, including fitting in self care. I’ve been noticing I feel less underwater and more like I’m actually swimming.

These past weeks I met and hired someone to make my mom dinner 3 nights a week as well as do her yardwork and take her garbage cans to the curb- a major win if it works out. And we got signed up for a senior companion program where a volunteer will spend Friday afternoons with mom going for a walk, coloring, etc.

Ella is doing well despite a cold. She is walking and enjoying exploring sounds that may be words at some point. Sleep is still tricky and night time is still a bit of a pain point for us but I’ve been managing it a bit better.

My business is now 7 months old and despite a very challenging workweek I can feel the benefits of things stabilizing. I am also now one year into home ownership and have been making an effort to make the place feel more homey. It feels great to establish some routines and roots and all of that is helping me navigate the challenges better.

Pill dispenser – a game changer

It was such an incredible difficulty for my mom to manage her meds. We went from a weekly pill case to pre-packaged blister packs from her local pharmacy. But it was still agonizing – she just could not keep track of how to take them and get anxiety around it, which led her to call once over 30 times in a day just about the pills.

She also had a handful of occasions she over medicated, which caused big problems.

It took me way too long to start using this locking automated pill dispenser. It is easily fillable and programmable by me. Twice a day, an alarm goes off, and her pills are dispensed. Most importantly, she can’t over-medicate. I truly wish I bought this 2 years earlier (can be found on Amazon).

Harm reduction

I’ve been trying to come to terms with what Harm Reduction can look like in the context of taking care of my mom with dementia. In an ideal world she would have full time care or a safe place to live with others but we are constrained by money, a small and distant family, and by housing so we are making the best of what we do have.

Dinner time is the most difficult for her, and the part of the day mom needs the most support. Recently, several times, she set the oven to broil instead of 350° (they are across from each other, and she was having difficulty seeing where the knob was pointed). Her dinner burnt a little but no big harm.

Realizing this, I made a red arrow on the knob which seems to have resolved the issue for now – no broiling since. I also watch the cameras as she warms up her meals and can see if the stove is turned off for the night as she heads to bed.

The goal right now is to keep her as safe as I can given the limited resources, and when the time comes, we will increase the care she receives.

Elder lawyer appointment

I met today with an elder lawyer I was referred to for a free consultation via a Caregiver Resource center I am connected with.

The news was about what I expected, and it’s helpful to have a clearer picture of what the future holds and our options. But the options aren’t great. Basically, we will need to pay out of pocket for any care for my mom until she qualifies for Skilled Nursing fairly far down the line.

The attorney literally said, “In the meantime, you have to find care you can afford, and what you can afford… it won’t be good.” So I guess it’s time to get creative and start really looking at our options.

Simultaneously, these last couple of days, mom has been totally out of it. She probably called me 10 times during dinner, just trying to do the basic daily routine. I’m hoping that with some better rest, she may even out a little, but it definitely exacerbates the worry about how to get care for her.

Storm update

We made it through another round of storms. I made the decision not to evacuate my mom because she was refusing to go until the cat was in, and as it turned out, none of her neighbors were going.

There is another storm coming tomorrow and I think I will try my best to help her keep the cat in tomorrow so I can evacuate her.

It was a nervewracking night and day as she was super anxious and ended up staying awake the whole night. The next day, she was a zombie, and the road was indeed flooding a bit. Fortunately, we made it unscathed, and she caught up on rest and could function better.

The next town over flooded terribly and it was very humbling as I had a “how bad can it really get” attitude given the area. It turns out, based on the next town, really bad.

This is the kind of situation that is so tricky to navigate, especially alone. Trying not to miss work (and income), tending to the babe’s needs, while also trying to support someone who cannot make rational decisions and plan ahead is incredibly difficult.

The image below is mom’s intersection with some minor flooding.

Ocean walk

With the next “atmospheric river” headed our way and knowing it may be stressful if I end up needing to evacuate my mom, I decided to prioritize self care this morning. We scrapped our morning routine, grabbed coffee and a croissant, and went for a walk to the ocean before work.

Sandbags and help

My mom’s house is in a flood zone, and this year, we have had a tremendous amount of rain. On New Year’s Eve, I received a call that her street had waist high water flowing through it, but fortunately, her house is up a sloped driveway and didn’t flood. Needless to say, it was a very stressful New Year’s Eve, and I have had to evacuate her twice since due to mandatory flood evacuations.

Another storm is slated to hit tomorrow. A friend saw the news and thought of us and suggested she could pick up sandbags and bring them to my mom (the city had collected the ones I had filled myself from the prior storms several weeks ago).

It was such a relief to not have to coordinate and do this task myself. And while I am still anxious about the flooding and whether I will need to evacuate mom, it was a relief not to add hefting and filling sandbags to a busy workweek.

One thing I have realized is I respond best to direct clear offers for help. A lot of people offer support or help in a vague way, and I tend to say no unless an immediate task is apparent – I feel bad asking! But when someone, like my friend Kinsey just did, just sort of tells me they are going to do something, it is a HUGE relief and an easy yes. I should tell my friends this more when they offer to help. I often don’t have the bandwidth to ask or coordinate in this crazy chapter of my life, but I will definitely accept any help offered.

A sweet evening

Tonight was the second of the new Tuesday night dinner routine where I pick up Ella after work and do dinner at my mom’s. I learned last week that I don’t want to add cooking a full meal to the mix because it makes it stressful (especially with Ella wanting extra attention these days) and bought a frozen lasagna and garlic bread and some salad this weekend when I took mom shopping.

Despite starting out stuck in a massive traffic jam, we made it 75 mins later and had a lovely, relaxed evening. The food was easy, albeit not the healthiest, and everyone was in good spirits. Ella and my mom can be so sweet together and shared some big sweet kisses as we said goodnight.

Week recap

The last few days, I had been feeling more hopeless. I got some good news that I was getting a return on my taxes followed by the bad news the next day that actually there was a typo in the summary and I owe more in taxes than I have in the bank. I felt worried that this meant my business isn’t viable (though today I think I figured out the issue and it’s more of a one-time fluke related to buying my home last year). But given the weight of everything this just felt like one blow too many.

In the meantime, Ella is going through a phase where she is having meltdowns if I don’t hold her when she wants to be held- which includes trips to the grocery store, on walks with friends, when I’m make dinner, etc. And things with my mom, Barbara, are always up and down. It’s exhausting to manage everyone else, especially when I’m feeling more upset myself.

I did get a night out at a bar while a friend stayed with Ella after bed. A glimmer of my past life. And it was fun! But the exhaustion when Ella woke at 5am after I’d only gotten home around 2am probably exacerbated the tiredness and drained feeling on Sunday.

Today, I am feeling more resilient and hopeful. I got in a bunch of exercise, worked, and cleaned a bit. Ella and I had a nice evening, and mom was together enough to handle heating her dinner on her own. It’s amazing how different I feel when I am not feeling so needed and confined by caregiving. It’s the always constant reminder that every day feels different and even the hopelessness ebbs and flows from day to day- to just keep putting one foot in front of the other and trying my best to get through.