My Substitute Reality -You're just jealous cause the little voices only talk to me-

Wednesday May 17, 2023


Filed under: Family,Life — don @ 2:24 pm

It looks like time to update my blog. I’ll post a few of the major things happening lately.

Betty had an anoxic brain injury in 2011 due to stitches coming loose in her neck right after her Thyroidectomy. She was in an induced coma for about 3 days right around Christmas. When they brought her out of it, she seemed fairly normal, or as normal as you could be if you were in an induced coma. She came home about a week or so after that and all seemed good.

Sometime around 2015 she started noticing her short-term memory was not as good as it had been. She went to a psychologist who prescribed Adderall to help her get sharper. It seemed to help but at this time I wasn’t really aware of how much she was being affected. She was taking a lot longer to “sort her pills” and “pay the bills” but I just chalked it up to Betty being Betty.

By 2018 it was clear to everyone that her memory was being affected. She stopped driving because she had had a couple of auto accidents and she didn’t trust herself to drive anymore. She was also taking a very long time to do the mundane tasks and even cooking simple meals was becoming difficult.

In 2019 she started having a lot of bouts of having to go to the ER and was admitted quite a few times, usually for UTI or Hypocalcemia. Her body didn’t seem to want to regulate calcium and she would go from way under to way over. That affects the mind a lot and makes her brain injury issues much more pronounced. I don’t recall how many times she was in the hospital but it seemed like a lot. She also started having more trouble walking periodically. That was also the year I took over most of her “mundane” chores.

During 2020 I, like most older people with computer-related jobs worked from home. It helped me keep a closer watch on her and I was able to provide more support. She had a few times when she needed to go into the hospital but it seemed like her calcium was under better control. She did have to get another stent in her heart in early 2020. I believe that took the total to 5.

When I was able to get the vaccine I went back to work but I also hired a caregiver to come into the house to help her get breakfast and helped her until I got home around 2pm. I was getting up around 3:30 am so I could get into work and leave early so she didn’t need a full-time caregiver.

By early 2020 I was 67 and ready to retire. The company I worked for had given me quite a few stock options over the years and I didn’t really want to buy them all but it was either that or keep working until they sold the company. B and I had talked about moving to Arizona for several years and I really wanted to so I started looking at how to keep my options yet move to Arizona. I talked to my boss who talked to the CEO and we came up with a solution that allowed me to keep the options and semi-retire. We were able to move to Arizona on July 1, 2021.

I realized working in the morning and taking care of B was going to be difficult so I hired a part-time caregiver who did about the same schedule as the one in Arizona. She would arrive around 9-10am, help Betty get up and fed and then keep her safe until I stopped working around 1 -2 pm. She seemed to be getting worse physically and on July 25th, 2022 I had the paramedics come and they took her to the ER. I went a few hours later and asked the Dr. if he could put her into rehab as always before that had seemed to help. She was in Apache Junction Health Center rehab for about 5-6 weeks when the medical professionals decided she wasn’t going to get any stronger and needed to be put into long-term care. She stopped walking, even with a walker and they said they couldn’t help her.

I had been driving the 20 miles to see her every few days and about that time I was told about ALTCS, the Arizona Long Term Care System that would help with her medical needs and pay for her care if I went through the process to qualify. We started that in September 2022 and finally got her medically qualified in December but we have been working to get the financial side approved since then. By October I started looking for someplace closer that I could move her into. I found a group home only about a mile from me run by a couple of Haitian brothers. One of them, James, is a part-time hospice minister. Jimy spends about half the week there and James the other half. They take very good care of B and I love the fact it’s so close. I try to go see her every day.

This has been a very difficult process for both B and I. I have to admit there were times I felt like giving up. It was so stressful watching my wife slowly lose her ability to remember people and events. As is usual for patients with dementia she remembers long-ago people and things fairly well but there are some days she doesn’t remember any of the family. Her daughter Michelle went over on Mother’s Day and at first, B didn’t know her. She did remember her after a few minutes but I know it’s hard for B’s daughters too. I know well what it’s like to have a parent decline like that. My dad had Alzheimer’s and died of it in 2004.

So that’s what’s been happening to us over the last 12 years. The last couple of years have been the hardest but as of this writing B has been seeing a PT person and OT person and has actually walked using a walker for support. She wants to come home and I would love that if we can get her strong enough to help in her care. Right now I could not do it without a lot of help. She enjoys the people in the home and has a roommate she adores. This will be our life for the foreseeable future. If it changes I will say something

1 Comment

  1. Long post, much catching up on it, good to have it all documented. We should all blog often about family stuff. Glad you’re finally caught up.

    Comment by Donna — Thursday May 18, 2023 @ 9:30 am

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