Sad about how the holiday visit to my family went

[Anonymous]

Op, you do not get how it works. It is very hard to get nursing care and the auality sucks. We are govt pay for my mil and it was six months with me working on it many hours a day while caring for her. Caring for her was very hard and I know how your mom feels. They take all but $75 of her money and when they found out she had the $2500 allowed the nursing home tried to take that too and is threatening to sue us for it. If I could have cared for he I would have but our house is small and our kids have too many special needs. You need to support her, not condemn her. She is doing the best she can.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here, we live far away and if the holiday wasn't at her house then she wouldn't be able to be together with all of us. Who can you hire on Xmas Eve/day to stay w/ my father?I said hosting she didn't have to do much and I or DH could have done mostly all of it but she does stuff weeks or days in advance. We did have some food catered. Yes, early onset Alzheimer's - he's 64. It's been a year he's been bedridden. He gets VA benefits and SS disability. Their house is paid for so my mother would probably be ok financially if she decided he needs to go to a nursing home. And yes, maybe I'm a bit overwhelmed and sound like an ungrateful bitch. Only child too so this all falls on me. No siblings to support each other emotionally.

Except it doesn't, since you're far away and your mother is struggling with it. And didn't you say you had a sister?
You may soon be part of the sandwich generation if you decide to care for your parents as well your children. Then you will have my full sympathy.
In the meantime, plan for that moment rationally instead of feeling needlessly put-upon. You sound immature for your age.
I'm an only child, my parents are 64 and my entire family lives in Europe. DH and I are planning for when my parents need care.

OP, it is so important for you to quit gazing at your own naval and think about what is both crucial and limited now: your dad's presence on earth and your mother's struggle with the weight of that. Please don't make this about you and what you are going through. It pales in comparison to what your mom deals with 24/7. She's not thinking about the VA benefits or the house but about getting up in the morning, carign for him in the home they share. That is probably their mutual choice. Do you even know their intentions?

"Mom" has a nurse coming in twice a week, hospice coming every day and a social worker on the job. Mom has been doing the research. I'll bet she knows a thing or two about the nursing home options, too. Op should ask.

[Anonymous]

OP here, she can use 5 days of R&R provided by Hospice and or the VA but my dad would be cared for at a nursing facility. She refuses to leave him. I would take her anywhere I could afford for those 5days or pay for her to visit us or anyone else but again, she won't go. I'm not sure if I could physically lift my dad up to change him, bc if I could I'd offer to stay for a few days so she could go somewhere but she'd most likely want to see my kids (her grandchildren). She hardly has any friends she could visit.

[Anonymous]

OP here - no, she hasnt done nursing home research. Hospice was all set up by one company who provides all of care/professionals coming to the house.

[Anonymous]

Anonymous wrote:OP here, she can use 5 days of R&R provided by Hospice and or the VA but my dad would be cared for at a nursing facility. She refuses to leave him. I would take her anywhere I could afford for those 5days or pay for her to visit us or anyone else but again, she won't go. I'm not sure if I could physically lift my dad up to change him, bc if I could I'd offer to stay for a few days so she could go somewhere but she'd most likely want to see my kids (her grandchildren). She hardly has any friends she could visit.

Do you know what your dad's prognosis is? I know that once they become bedridden like that with early onset Alzheimer's it can go very fast. They lose the ability to swallow after a while, become susceptible to pneumonia. Again I'm really sorry Op.

[Anonymous]

Anonymous wrote:OP here - no, she hasnt done nursing home research. Hospice was all set up by one company who provides all of care/professionals coming to the house.

Somebody got that company to come in and provide the help. Was it your mom? How did that come about?

Can you convince your mom to do a day trip with you to visit a nursing home?

[Anonymous]

Maybe do a 5 day respite in a nursing facility where mom can visit him? At least she would be able to go home and get a good night's sleep.

[Anonymous]

OP here. She won't even entertain a discussion about nursing homes let alone visit one or put my dad in one for even a night. Hospice care has been for a year since he's been bedridden. It can be provided at anytime if a patient is diagnosed w/ an incurable disease. His vitals etc. are still great and he eats well so it might not be the end anytime soon. I'm worried my mom's health will worsen over time bc she isn't taking such great care of herself right now.

[Anonymous]

Op, it is very disorienting to a dementia patient to move them for respite. I cannot blame her. Have some empathy. she loves him.

[Anonymous]

Anonymous wrote:OP here. She won't even entertain a discussion about nursing homes let alone visit one or put my dad in one for even a night. Hospice care has been for a year since he's been bedridden. It can be provided at anytime if a patient is diagnosed w/ an incurable disease. His vitals etc. are still great and he eats well so it might not be the end anytime soon. I'm worried my mom's health will worsen over time bc she isn't taking such great care of herself right now.

It depends on why your dad can't walk anymore but if he is losing control of his muscles that can really progress depending on what area of his brain is being damaged by the disease.

A lot of times early onset progresses faster than older age alzheimer's. How long has your dad been sick? Is he still able to communicate at all or is he pretty much in his own world now? I know they have new meds out which can slow the progression of cognitive decline, I don't know how effective it is.

[Anonymous]

Sorry, OP. I couldn't get through your post---learn to use some damn paragraphs!

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here. She won't even entertain a discussion about nursing homes let alone visit one or put my dad in one for even a night. Hospice care has been for a year since he's been bedridden. It can be provided at anytime if a patient is diagnosed w/ an incurable disease. His vitals etc. are still great and he eats well so it might not be the end anytime soon. I'm worried my mom's health will worsen over time bc she isn't taking such great care of herself right now.

It depends on why your dad can't walk anymore but if he is losing control of his muscles that can really progress depending on what area of his brain is being damaged by the disease.

A lot of times early onset progresses faster than older age alzheimer's. How long has your dad been sick? Is he still able to communicate at all or is he pretty much in his own world now? I know they have new meds out which can slow the progression of cognitive decline, I don't know how effective it is.

I ask this because as long as he's having lucid moments, the less likely that she'll be willing to leave him for any length of time.

[Anonymous]

My mother would never allow us to put her or our father in a nursing home. She's seen too many of her friends die within a few months of being moved there that she's biased against all nursing homes. The really good ones are very expensive and if you don't have a family member visiting regularly and talking to the nurses and caretakers you may end up with poorer care than someone who's family is very involved. I understand your mother's point of view.

[Anonymous]

Anonymous wrote:My mother would never allow us to put her or our father in a nursing home. She's seen too many of her friends die within a few months of being moved there that she's biased against all nursing homes. The really good ones are very expensive and if you don't have a family member visiting regularly and talking to the nurses and caretakers you may end up with poorer care than someone who's family is very involved. I understand your mother's point of view.

But the mother is there and could visit daily (as well as the mother's siblings) and be very involved in their care. She just does not want to consider it.

[Anonymous]

OP, I posted previously - my father has Alzheimers and I found your original post almost unbelievable. In your followup posts you have offered more detail but what comes through is an incredible lack of sympathy for your mother. Before you criticize her, you have to understand what she is dealing with on a daily basis. Alzheimers is a horrific disease - it robs patients of their lucidity and their dignity and eventually their basic skills of self care.

I speak with my father multiple times a day; I am an adult who appreciates the disease (my grandmother had it also, and lived with us when I was a kid) but it still breaks my heart every time. Your mother is living this. She is seeing the most important person in her life reverted to an infantile state, and she is responsible for his daily care. Can you not understand why she might want a little help with taking out the trash?

I'm guessing from your post you are relatively young. And since your father is only 64, I should mention, my mother died at 63 of cancer. No one should suffer and die at this age. It's awful, and you are probably grieving yourself over what is to come. But please, find a more healthy way to process your grief than heaping blame on your mother. Invest yourself in trying to find high-quality care for your father, either as a respite or in a nursing facility. And recognize that what your mother has done is heroic; try to support her instead of criticizing her for being negative during your visit.