March 11, 2019

Jane update:

This morning my dad & I met with Sean (owner of the facility), Patty (head nurse) & Dr. L (psychiatrist on staff) in regards to Jane & my recent concerns. As a quick reminder, 2 weeks ago Jane told me she was afraid & last week she acted afraid when her roommate came near her.

It was good to have all of us in a meeting together to ensure we are all on the same page.

It had been decided a few weeks ago to reduce Jane’s meds. She had been on a psychotic drug to ease the anxiety the dementia causes her. As we have progressed with the disease, we began to question if Jane continues to need these meds. I have no experience with these drugs nor have I been involved in the discussion with the docs in regards to administering the drugs to Jane so I listened to Dr. L & asked questions. My dad said he notices Jane is more alert since removing the drugs. Dr. L’s observation is Jane is only mildly more alert. I agree with her observation & stated so in the meeting. Dr. L explained that given Jane is more alert, she could be experiencing more anxiety. She also could simply be experiencing side effects of the withdrawal from the psychotic drugs. Dr. L stated she didn’t see enough information to warrant her concerns to place Jane back on the meds. Nor did she see enough for her to be concerned of an issue if we went back on the meds. My dad prefers to keep her off the meds, so it was agreed this is fine for now. We all will keep a closer watch on Jane to ensure the removal of the drugs is not causing her distress.

There is no evidence Jane’s roommate has harmed her physically. They have been roommates for quite some time without any issues. And like Jane, her roommate’s health is deteriorating so it seems unlikely her roommate is causing her physical harm. However, it was agreed Jane’s roommate does not have the friendliest disposition & while she tends to leave Jane alone, she can be vocal with the other housemates. And to be fair, the roommate was speaking at one of the other residents when Jane froze up & acted scared. So it is completely possible she was scared due to the loud & negative tone of voice of her roommate. I was also ensured the main caregiver at night has been the caregiver in Jane’s house for a long time. He is very calm & patient & there is no reason to believe he would harm Jane.

So we all came to the conclusion, it’s unlikely someone is harming Jane. Which means Jane is somehow causing the injuries. Is she having more seizures & that causes her to fall out of bed? Patty mentioned Jane hallucinates & reaches for things that aren’t there. This can cause her to fall out of her chair or out of bed. Patty treated it like this is new. My dad & I both agreed this is not new – it’s been going on for quite some time. Our only option to stop the hallucinating is to dope her up, to which my dad & I do not feel comfortable – at least at this time. If things get worse, we all agreed to revisit the topic, but for now, all 5 of us in the meeting feel comfortable leaving things as they are & watching.

The final treatment discussed was moving Jane to another home. The facility where Jane lives is comprised of 8 individual homes. Residents are assigned to homes based upon their condition. The 2 houses in the back are for residents with behavioral issues. Jane had behavior issues when we first moved her here to the facility 3 years ago but luckily those quickly subsided. She is the farthest progressed in the disease of all the residents in her current home. While Jane is not a risk to others, there is a possibility a resident could move into her home who could pose a threat to Jane. We could move her to a house where the residents match Jane’s stage of the disease. We were told it is a very peaceful, calm house. Palliative care is the word Sean used repeatedly to describe this house. He also stated this is where most residents end up as they approach end of life. My dad stated in the meeting he is not ready to admit this is where we are in the journey. Sean was very kind. He said I’m not pushing to move Jane to this house. I am simply explaining this option, and when you are ready, we can discuss the move. I stressed my concern for a move. Jane doesn’t like change. She is also very bonded with Emely – her primary caregiver. Dr. L said it’s her belief Jane is progressed to a point in the disease she would not notice the difference. I said I disagree – I believe she will notice. No one argued with my dad or I or said anything had to be done today. And before we closed out the meeting, Dr. L checked in with me to make sure I was on board with everything. I was & stated I appreciated everyone involved in Jane’s care.

As I write this update & revisit today’s meeting in my mind, I wonder. Am I like my dad & just not ready to admit we are reaching final stages of this horrible disease? Is Dr. L correct & Jane would not mind the move to palliative care? Is it me who doesn’t want the change? I mean it’s not like Jane walks anymore & wanders around the house. She is in a wheelchair or sitting in a chair. And she has to be assisted (usually by 2 people) to move from a chair to her wheelchair & vice versa. She is barely there anymore. Even though I know she recognizes me & I know she loves when her family or friends visit, that fire she used to have is gone. You look in her eyes & they no longer sparkle. Occasionally Jane has very lucid moments where the sparkle appears & she smiles – but this is far & few. Most days she is simply there, surviving. The disease is winning. It’s taking over & stealing more of Jane each day. None of us know how much longer she will be with us. But we all agree we don’t want her suffering & we want to make sure she is as comfortable as possible. I trust the professionals involved in Jane’s care. They have watched over her for the past 3+ years. While I have a strong empathic bond with Jane, I need to trust the professionals. They’ve seen this disease inside & out. They’ve watched countless people on this journey. I’ve only watched my stepmom.

Man do I really hate this disease!!!!