Anonymous
Post 09/14/2023 17:43     Subject: Help me understand what is going on with FIL's mixed dementia

OP here…FIL is starting to eat more while under hospice care and even making friends. His hospice team evaluated him and determined there marked improvement in speech and memory retention. We have no idea what is going on or why this change happened while FIL is in a long term care facility which he professes he hates.
Anonymous
Post 09/07/2023 23:12     Subject: Help me understand what is going on with FIL's mixed dementia

For a crash course on what’s going on with your FIL, I recommend any/all videos on YouTube featuring Tam Cummings or Teepa Snow.
Both women are experts in the field of dementia and elder care.
Anonymous
Post 09/02/2023 20:40     Subject: Help me understand what is going on with FIL's mixed dementia



I don't think anyone really knows, OP. You have to take things day by day. My bipolar FIL died after episodes of alternating confusion and clarity, and my MIL refused to go and see him - she had suffered a lot from his bipolar behavior over the decades. Her children shielded her from all the details preceding his death.

I know it's very stressful for you. Hang in there.
Anonymous
Post 09/02/2023 20:34     Subject: Help me understand what is going on with FIL's mixed dementia

It sounds like could be the last surge of energy that people sometimes get in their final days. Sorry to be a downer.
Anonymous
Post 09/02/2023 16:59     Subject: Help me understand what is going on with FIL's mixed dementia

OP here...we visited FIL today and unlike last week, he asked for us to bring a pizza. We did and he ate two slices, albeit small slices. This is so surprising since he hasn't eaten for two-three weeks now. He was just put on haloperidol a few days ago by the hospice. He is coherent enough to talk with us and recognize us, but as soon as our kids left with MIL, FIL asked why we did not bring the kids to see him. He seems calmer though. Is this appetite change due to the haloperidol or something else?
Anonymous
Post 08/29/2023 15:42     Subject: Help me understand what is going on with FIL's mixed dementia

Anonymous wrote:I’m sorry you all are dealing with this. How old is FIL? Is there someone with the hospice group that you can talk to? The body shuts down at the end, and refusing food and water is common. Also, a return of lucidity is known to happen as well. I would not take his refusal of food to mean that you are starving him.

As a culture we do a very poor job of handling the decline and lead up to death. If you are on social media at all, there are some hospice nurses who are seeking to educate people about end of life issues. HospiceNurseJulie is one of them. She may have some links to readings you might find helpful. I found the book “Being Mortal” very helpful. It’s a bit more about the “big picture” than the crisis point your family is in now, but I found it helped me in my thinking about these issues.


This. I would get guidance from hospice and also change the language you use with yourself. You are not "letting him starve to death" you are allowing a natural process to happen toward the end of life. Definitely consider quality of life issues as you make decisions. In my family it felt like my dad was being tortured simply because my mother, who never got along with him, couldn't allow him to pass peacefully. Hospice tried to explain, but she could not listen and was completely irrational. He used every noise and action he could to convey he was ready. It was painful to watch. If you find yourself struggling with the thought of death see if the social worker at the hospital can speak with you and work with a therapist. I know it's hard, I have been there.
Anonymous
Post 08/29/2023 14:50     Subject: Re:Help me understand what is going on with FIL's mixed dementia

If he starves to death --- it's because he's ready to die.

He is on death's-door. When and if anything can be done to extend it slightly, should not be your focus. Same with understanding *fully* his decline. All you need to know: he's close to death. Help your MIL. Sounds like she needs counseling. Sounds like she may need counseling to get-on-with a heathy life of her own. She is your next big challenge. I'd focus on that.

Besides, she is next of kin to FIL. If there are any -final- decisions to be made, it's she that decides.
Anonymous
Post 08/29/2023 14:25     Subject: Help me understand what is going on with FIL's mixed dementia

Anonymous wrote:
Anonymous wrote:I’m sorry you all are dealing with this. How old is FIL? Is there someone with the hospice group that you can talk to? The body shuts down at the end, and refusing food and water is common. Also, a return of lucidity is known to happen as well. I would not take his refusal of food to mean that you are starving him.

As a culture we do a very poor job of handling the decline and lead up to death. If you are on social media at all, there are some hospice nurses who are seeking to educate people about end of life issues. HospiceNurseJulie is one of them. She may have some links to readings you might find helpful. I found the book “Being Mortal” very helpful. It’s a bit more about the “big picture” than the crisis point your family is in now, but I found it helped me in my thinking about these issues.


Thank you. FIL is 76. The hospice put him on medication to calm him today and he ended up calling MIL to ask her to come see him. It seems like one day he tells her he loves her and the next day he is extremely angry at her. That is why she is having such a hard time coping. Is there a way for her to set boundaries with him if his brain is this far gone?


NP. She just has to decide on her own boundaries and stick to them, although it’s okay if they change as things evolve; your FIL does not likely have the capacity for reason. Hopefully now that he’s in hospice they will be able to keep him comfortable and calm, and that will be helpful overall.
Anonymous
Post 08/29/2023 13:19     Subject: Help me understand what is going on with FIL's mixed dementia

Anonymous wrote:I’m sorry you all are dealing with this. How old is FIL? Is there someone with the hospice group that you can talk to? The body shuts down at the end, and refusing food and water is common. Also, a return of lucidity is known to happen as well. I would not take his refusal of food to mean that you are starving him.

As a culture we do a very poor job of handling the decline and lead up to death. If you are on social media at all, there are some hospice nurses who are seeking to educate people about end of life issues. HospiceNurseJulie is one of them. She may have some links to readings you might find helpful. I found the book “Being Mortal” very helpful. It’s a bit more about the “big picture” than the crisis point your family is in now, but I found it helped me in my thinking about these issues.


Thank you. FIL is 76. The hospice put him on medication to calm him today and he ended up calling MIL to ask her to come see him. It seems like one day he tells her he loves her and the next day he is extremely angry at her. That is why she is having such a hard time coping. Is there a way for her to set boundaries with him if his brain is this far gone?
Anonymous
Post 08/28/2023 18:40     Subject: Help me understand what is going on with FIL's mixed dementia

If he is refusing to eat or drink he will continue to get weak and be prone to infections — sepsis can come back.

Not to be bleak but patients near death can often “improve” before they pass. It’s called the surge. It can be hard because you think they are getting better but it’s a rally.

You have to decide whether you want to have him be in rehab or on hospice. If the rehab is covered by Medicare you can’t do that and hospice. If it is private pay skilled nursing you can do that and hospice. Once he’s on hospice Medicare coverage changes and it becomes more restrictive. For example, if the sepsis returns he could not do IV antibiotics only oral. The course of treatment changes and your MIL and yourself would have to be comfortable with that. Rehab is for rehabilitation and hospice is for a comfortable death. It’s tough. Talk to the doctors and the hospice and your MIL and see what feels right.
Anonymous
Post 08/28/2023 18:02     Subject: Help me understand what is going on with FIL's mixed dementia

Pp from above. Here’s an interview with the nurse I mentioned. You might find it helpful. https://www.thepatientstory.com/medical-experts/nurse/julie-mcfadden/
Anonymous
Post 08/28/2023 18:00     Subject: Help me understand what is going on with FIL's mixed dementia

I’m sorry you all are dealing with this. How old is FIL? Is there someone with the hospice group that you can talk to? The body shuts down at the end, and refusing food and water is common. Also, a return of lucidity is known to happen as well. I would not take his refusal of food to mean that you are starving him.

As a culture we do a very poor job of handling the decline and lead up to death. If you are on social media at all, there are some hospice nurses who are seeking to educate people about end of life issues. HospiceNurseJulie is one of them. She may have some links to readings you might find helpful. I found the book “Being Mortal” very helpful. It’s a bit more about the “big picture” than the crisis point your family is in now, but I found it helped me in my thinking about these issues.
Anonymous
Post 08/28/2023 17:09     Subject: Help me understand what is going on with FIL's mixed dementia

FIL had been paralyzed for more than 16 years due to transverse myetis. MIL took care of him until recently. He has had cognitive decline for a long time but it really progressed rapidly after he went into septic shock in March because of a blockage to his kidneys. He went from recognizing us to not in a matter of a month. We were told to take care to the ER by his physician 3 weeks ago because of this rapid decline. When he was in the hospital, he was refusing food, drink, and medicine. The neurologist at the hospital gave an initial diagnose of mixed dementia (vascular and Alzheimers) and with the rapid decline of his cognitive abilities and aggressive behaviors he was moved to a rehab facility that also provided long term care. Since he has been at this rehab facility (for two weeks now), he has not eaten, taken his medication, and drank very little water. Based on his refusal of food and medication and the progressiveness of his dementia, the social worker and MIL decided that it would be best to start hospice care. However, his cognitive abilities changed rapidly within the last week from not recognizing any one to recognizing his loved ones (including ones who he has not seen for years) but still is confused on why he is in this rehab facility and feels MIL is conspiring to keep him there. He is still refusing food and medication and has lost a significant amount of weight. DH and I are at a lost to make of his recent cognitive changes. In addition, we are having to deal with a lot with the rehab facility instead of MIL because she is traumatized by FIL (long history there) and refuses to go see him. FIL has always had an awful personality (very emotionally abusive toward his loved ones, including to MIL, DH, and me.) We do not know how to proceed given MIL's reluctance to engage DH's care situation: wait for him to starve to death, get additional evaluations, or something else. Any recommendations?