This is a non-technical post, but a necessary one for me. If you’re only interested in technical content, that’s okay, you can stop reading, I won’t be offended (heck, I won’t even know).
I have been a bit silent lately, the global pandemic has hit lots of folks hard; emotionally, physically, mentally, and financially. I am no exception to those blows. I come from a very stoic line of Brits (I’m second generation American), so I had been holding it all in and trying to put one foot in front of the other to make it through. I was doing a good job too until something very sad happened to our family in June and I went almost completely silent. I didn’t share it with anyone in the community, because that’s how I was brought up, stay stoic, be silent, chin up and move forward.
A few years ago, I decided to take a step back from some of the Community work I had been doing (you can read about that here) so I could spend more time with my mom. She has Alzheimer’s. It runs in our family and it started in my mom at a relatively young age. I wanted to be able to make as many new memories with her before should could no longer retain those new memories.
We had some great adventures the last few years. There were weddings, new babies in the family, and even a few road trips here and there. She became more prolific in her quilt making. She wanted to make sure everyone in the family had a quilt while she could still remember how to make them.
We were trying to keep my mom living as independently as possible for as long as possible, so we bought the house across the street from ours for her about three years. That way, she could live independently but I could also “keep an eye on her” from a distance. From my office I could see her house and know that she was safe.
Then the unthinkable happened in late May this year. A medical emergency landed my mom in the ICU of the local hospital for a week. Turns out, she was not taking her medication and hadn’t been for at least six months. We almost lost her. Her Alzheimer’s-y brain told her that she wasn’t sick and didn’t need to take medication. Well, when you’re a Type 1 diabetic and don’t take your insulin, bad things happen. It was made very clear to us that my mother had reached the point where, not only could she no longer live independently, but she would now need 24/7 care due to the complications of not taking her medications.
We looked at all of our options for 24/7 care. We even tried having one of my sisters live with her for a few weeks after she was released from the skilled nursing facility. But it quickly became clear that none of us possessed the necessary skills to care for her. I kept beating myself up for not being able to care for my mom, after all, she cared for me as a child, it was the least I could do. But it came down to the fact that I do not have the skills necessary (nor do my sisters) to care for my mom in the manner that she needed to be cared for. We needed to be sure that she was safe, getting her medication on a regular basis, and not wandering away. Our only solution was a memory care facility.
As if this wasn’t a hard enough fact to accept, we also had to navigate this through the current global pandemic. Not being able to visit when she was in ICU was hard, not being able to visit the potential memory care facilities to ensure my mom was in the best place possible was hard, but not being able to visit my now that she is in a memory care facility is the worst. She doesn’t understand why we can’t visit or why she can’t leave and having to explain it to her over and over again breaks my heart.
Throughout all of this, I had the voice of British stoicism whispering in my ear, but I was barely keeping it together. I didn’t sleep, I couldn’t eat most of the time, and was generally very hard to live with. Until one day, when I was going through my mom’s things in her house, getting it ready to sell. I came across notebook after notebook where she was writing notes to herself so she wouldn’t forget things. One of them had the names of all the people in her family along with all the names of the people in our family and what their relation was to her. This broke me.
I left the house and went to sit on the front porch, I couldn’t stand to be in there one moment longer. As I came out, one of our lovely elderly neighbors was passing by. She saw how distressed I was and wandered up to the porch to check on me. I told her about my mom and how horrible it was that we had to move her to a memory care facility. She looked at me and said, “It’s not horrible, it’s just very sad.” She told me that cancer is horrible (she should know, she survived it) but memory care is not. She said I made the right decision for my mom. She was safe, she was getting her medications on a regular schedule, she was eating nutritious meals, and she was protected from wandering away. She said my mom would make new friends and adjust.
My neighbor was right. The first week was a bit rough. But now, six weeks into it, it’s her new “normal”. We talk on the phone a few times a week, actually, I do most of the talking. She often times can’t remember things when I ask questions or articulate what she wants to say, so I just talk about random stuff in my life. We have had a new baby join our family since my mom moved to memory care. We’ve told her several times about the new baby and every time is a surprise for her. Most people would think of this as very sad, but I’m choosing to think of this as one of great joys of this disease. She’s so excited and happy every time she learns she has a new great-grandbaby, even if it is the same one over and over again. Can you imagine being that happy about the same thing every time?!
I struggled for a long time on whether or not to write this post. That British stoicism kept telling me to just keep marching on. In the end I decided not only would it be cathartic, but after hearing my neighbor’s take on it, I thought I needed to share that with my #sqlfamily, just in case someone else is or has gone through this. It’s been a very difficult three months for me, but I’m feeling better about it, and life in general, and am ready to start engaging with the community again.
7 thoughts on “It’s Not Horrible, It’s Just Very Sad”
I teared up a little reading this, but in a good way — in that way in which I am remembering what is important about being a human. Thank you so much for writing and sharing this. Love to you and your family, Angela.
Thank you so much for sharing this. It’s a far more important part of your life than the technical stuff, and it helps people realize that we’re all much more than what we post in our technical writings. My heart goes out to you and your mom. My mom suffered through dementia, and has been gone for 3 years now, but I treasure the last few years, driving her back to Cleveland from her home in Florida for the holidays, and back again (because she didn’t want to put her dog in cargo.) Hugs.
Thank you for writing this. It made me tear up a bit, but it also reminded me that I made good choices for my mom when she was in a similar situation.
I’d noticed that you weren’t as “present” in the community as you had been, but simply wrote that off to diverging interests. I wish that I could have helped, since I was recovering from losing my mom while you were dealing with the progression of Alzheimers. I’d like to think that we could have helped each other. In retrospect, I should have been more open about what I was going through and let people know that I’d like to have helped them (and thereby helped myself).
Thanx for your words. My mom has Alzheimer too. My Dad helps her through the day. Bit it eats his life. So we need to think about a change in the next time…
This brought back memories. I lost my Grandad to Alzheimer’s and my dad to dementia. The long goodbye for the family is a pain without words, and yet you express it beautifully. Thank you for a courageously honest post.
Thank you for sharing this. My mother had severe dementia for a few years before she passed. Since then, I have been educating myself on how to keep my brain healthy and I have learned that carbohydrates are responsible for diabetes as well as brain decline. To everyone who wants to keep their own bodies and brains healthy, I recommend reading the book “Grain Brain”. Also, start adopting the ketogenic lifestyle. It would be horrible to know that there is a way we can prevent this in ourselves and our living relatives and not implement the solution.
Thank you for sharing this Angela…your neighbor is right, it’s just very sad. My across the street neighbor is dealing with dementia now. He was a very active athlete and now he has trouble speaking. But, his large family is taking care of him for now and he’s involved in everything.