My father has refused all medication and food for the past three days. He will occasionally take some water, but that’s it. He is still mostly in the throes of delirium, with some sporadic periods of calm. It is those tiny glimpses of who he really is that are the most heartbreaking. Yesterday the doctor told us there’s really not much to do except let nature take its course. My mother is meeting with the palliative care team today to discuss options. My brother and I both expressed that we would prefer her to bring him home with a round-the-clock aide, but she does not want to do that. I understand why and I told her I would support whatever decision she makes. I imagine if he goes to a nursing home or skilled nursing facility, he will continue to rage about his imprisonment. I would like to think that he could be at peace at home, but I know there is no guarantee of that, either, given his delusional state.
I have a big fear that he is going to come to his senses at a point where it is too late to change the outcome.
I am so sorry. This is so very hard. If he was my dad, given his dislike to hospitals or skilled nursing, I would bring him home with 24 hour help and hospice care.
For 3 years, I helped my mom to care for dad daily. They lived only about 20 mins away and because his decline coincided with the beginning of covid, I had no other choice. Also the help was for mom as much as for my dad, who was also quick tempered and difficult at times. After the last bout of hospitalization for my dad, I insisted that we hire help because it was becoming too much, too stressful, physically, emotionally, mentally. The doctors recommended meeting with palliative care staff and they recommended hospice at home. Mom was against it and said she can care for him alone (she was 82 at that time!). Partly it would be a new experience she didn’t want, she didn’t want a stranger living with them, and it was going to be expensive.
I was at my wits end, so I insisted it would be best for everyone. Having 2 strangers (2 aides who worked 3 or 4 full days each), was hard at first, but it did give mom the respite she needed (and me too). I still went daily, but I didn’t have to worry about every detail. Dad passed away about 6 weeks after in his home where he felt the safest. The last 2 weeks were the hardest, but without the help of hospice and full time aides, it would have been more difficult.
The cost was $10k per month. After he passed, mom said the overall cost was not as prohibitively as she initially thought because it was only for a short time. She wished she got help sooner.
That is so hard. I’m glad you have the palliative team available to advise. Is there any talk of switchover to hospice category (more free services), if he does not rebound? It might be that he has no qualifying diagnosis for that - not sure how it works.
I don’t think the expense is what is holding her back. It might be she is afraid to have him die in the house, but I think it is really more about his current agitated state and the trauma of the past few years with him. As he has deteriorated, he has become very hateful toward her. She admitted to me the other day that for the past year, she had difficulty getting out of bed and coming downstairs before late morning simply because she never knew which version of him she was going to encounter. He has been saying cruel and unkind things to me for the past few days, but I can discount them because I know that he loves me (and he has told me as recently as a few days ago). It is a very different scenario for her…so, while I think the kindest thing for him would be to bring him home, I think it might just do her in.
I don’t know whether this would help — and I don’t know whether this is part of hospice’s plan – but they will bring in a hospital bed. In theory, it’s to make care easier, but i always was thankful that my dad didn’t die in “his” bed. When he was gone the bed was gone, and that made things easier for us.
Your mom is concerned about his verbally bad behavior towards her. IMHO he could possibly decide to start eating/drinking, and then be going on for months and months making her life intolerable 24/7. I just read your additional post, and if she wants to remain in the home (sounds like her BR/BA is upstairs), she wants to preserve the ‘good memories’ and not the horrible things he has said to her which is emotionally so taxing for her.
Prayers that palliative care can come up with something that is more of a win-win than the limbo and very uncomfortable position you all are in.
I understand. Yes, protecting your mom is imperative. My dad was not verbally abusive to mom all the time. He relied on her in every way. She provided normalcy and safety. Being in his home was also his normalcy and safety.
Yes, hospice will provide a hospital bed as well as other necessary equipment.
I hope the palliative care people can listen to your family’s concerns and you all
find peace with whatever comes next
on this journey. Such difficult choices to be made, and you are doing the hard work of standing in the gap. Hugs to you. Thank
you for the update.
ok, just got the update from my mother. Things continue to change at a dizzying speed .
She met with the doctor and the caseworker today. The doctor feels that his mental state is being caused by two factors: the inflammation from the surgery and the fact that they had to take him off steroids far sooner than they had hoped, and typical hospital sundowning/delirium. The doctor really could not offer any predictions on what level of improvement was likely wrt the brain inflammation, but did feel that being at home would likely solve the delirium issue and perhaps give him his best chance of improving.
When my mother asked my father if he still wanted to die, he sobbed and said he just wanted to get out of the hospital. In a more lucid moment, he said that if he saw some improvement, he might want to live (I know, typing that out…I’m even rolling my eyes, as he really is a petulant brat). He also told my mother he wants to initiate a divorce.
So, given all of that, it makes perfect sense that…
She’s bringing him home to…die? Vacillate and live on to berate her for the rest of her days? Stay tuned.
He’s not had anything other than a bit of water for days (no meds), so perhaps this will be a very temporary situation and soft ending for him.
She’s made the arrangements with hospice for the hospital bed and whatever other services they offer. She’s just waiting for a call back from the home health agency she used before to make sure there is someone there before she’s letting the hospital transport him home.
I’m sure I sound awful in this post…it’s just a lot, and so many complicated dynamics and factors and just when I start to resign myself to one thing, it all changes.
@DeeCee36 you don’t sound awful at all, just overwhelmed, and I think anyone would be in your situation. Sending hugs and strength and hoping things resolve soon in a good manner whatever that may be.
The divorce piece must have been hard for your mom (and you) to hear - regardless of the intent.
These are short term memories. Whether he gets better and sees improvement in quality of life or doesn’t, the better memories will rise to the top over these difficult times.
And the doc thinks inflammation and steroids are the problem.
Is hospice (not at home) an option?
You absolutely do NOT sound awful in your post. You sound like most of us who have had to navigate these scenarios. You may FEEL awful but rest assured we know how hard it is.
First of all, hugs! Your situation sounds very similar to what we faced with my dad. He was an absolute nightmare leading up to and during his time in the hospital. Uncooperative, combative, mean, nasty to me and my mom, refusing food, ripping out IVs, etc. His dementia was worsening by the day. When they told me he was medically cleared for discharge, I cried. The next day we brought him home on hospice….to my house. My mom is frail and there was absolutely no way she could care for him, even with help. It was easier to bring them both to my much larger house, than all of us cram into their small apartment.
I will say, our hospice experience was great. They provided all furnishings and supplies, and helped me understand the medication management we could employ. We did not look at the anti-anxiety and sedating meds as keeping him drugged to control him, but rather helping to relieve his constant state of agitation. Living in a heightened agitated state was suffering in our eyes. When the meds helped to calm him, we even got a few smiles. He passed peacefully a week later.
Wishing your family some peace as you navigate these next steps.
Such a tough situation - glad there is hospice involvement to help sort through things.
We found our local hospice services very helpful for my mom (though details can vary by location / organization). There were more different people/names involved than I had anticipated which got confusing… but still a good thing. They even provided a 2nd hospital bed and transport to my house when Mom could no longer stay alone at her place. I was glad a friend had warned that once care meds were started she might no longer be herself, so we had our daughter visit first. In the case of a belligerent patient, it may not be an issue.
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