You suggested that they both move in with you/near you.
What if your mom moves in with you and your dad hires caregivers for you?
Consider that if he’s struggling now, she WILL end up in care eventually, because the road is only going one way, in truth. The best thing may well be to shift her into care now, while she is somewhat lucid so there will be some familiarity with the place, people, routine, when she begins to seriously lose her lucidity. Shifting her now may well be the wisest move.
And I will second the value of giving him the chance to dote over her, instead of caregiver to exhaustion, as the end approaches.
I’m so sorry you’re being faced with such difficult times, my heart goes out to your entire family.
The OP mentioned a half-sibling. If father’s other children are all also all half-sibs by a previous marriage, they may feel less need to jump in: the OP’s mother is not their mother. If Dad remarried when they were adults, they may not have had much connection with her.
24 hour care is very, very expensive. At bargain-basement pay ($10 an hour), it adds up to $1000 every four days, and $7200 every month.
You are NOT failing your mother if you allow her to go to a nursing home. Sometimes it is the only option that makes sense.
My sister just died in February, and she was in home hospice.
It was exactly like the OP said. Hospice came out a couple times a week to talk and see how she was. It was up to the family to do the care until the very end when she would be admitted to the hospice facility. She had to go to the hospital at one pont, and wasnt strong enough to go back home, so she went into the hospice facility to get stronger. They made it very clear that she would be going back home in a day or two, and they ordered a hospital bed to be delivered to her home so that she would be more comfortable. She died the day before the bed was to be delivered, and I am so happy it happened in the hospice facility where she felt secure.
A friend died a couple of years ago (different part of the state), and hospice came a couple of times a week for an hour or so. Co-workers and her church provided care while her husband was at work, and then he took over. Near the end she was unresponsive and just slept in the hospital bed in her living room, where she died.
So if the OP doesn’t have a network of people to help, her mother might get better care in a nursing home. It doesn’t mean that she or her dad don’t love and care for her mom, it might just mean that a nursing home is the best solution.
Ahem…
Your mom is close to the end of her life. Your dad can’t take care of her by himself. And while you are willing to drop everything to take care of your mom, doesn’t make your dad evil or selfish because he can’t or because he doesn’t like having strangers in his house every day.
You didn’t say if you’re familiar at all with your dad’s home culture, but due to that and his age he could have very different ideas on what a spousal relationship entails or letting people into his house or what he “owes” to you and your mom. You and him could have very different views of the situation due to that.
I know with my own mother she is very different culturally due to this, and as she gets older it only comes out stronger.
I quit work to care for my aunt. It did not work out, to put it mildly. She ended up in a care home and it really was the least worst option. Trust your father to find a suitable place for her.
If you move your parents 500 miles into your apartment, it won’t be more than a couple months that your mother will need to go into hospice or a nursing home anyway. Then you will need to move a 75 old man and a dying woman 500 miles back and find a hospice or nursing home anyway.
It won’t be long before she doesn’t know where she is anyway. Being at home isn’t going to be any better than being in a nursing home.
Sorry for your situation, and that of your father.
Regards,
Shodan
I haven’t read all the discussion, but want to offer this small bit of encouragement: We agonized over the decision, but finally relented and took by husband to residential hospice care. It was so wonderful. For him - to have round the clock, compassionate care without feeling he was a burden. For us - to be able to get some sleep knowing he was cared for and to have caretakers who understood he was living, though dying. The hospice center was so like home, with large family friendly rooms (we were able to sleep there, cook there, play games, watch TV or DVDs, internet…). It had play rooms for the kids and library (books and video) for adults. My husband said he wished we had moved him sooner…
So, perhaps, you and your parents do not have as much to fear as you imagine…
Yes. As hard as it is on your Dad now, it’s only going to get worse for him. Then the quality of care he is able to provide your Mother will not be what you would like it to be, and there may even be a point of emotional & physical overload for him THAT COULD BE DANGEROUS FOR YOUR MOTHER.
Seriously.
It’s a nursing home, not a prison.
A friend’s dad has just been moved into a nursing home (Parkinson’s, with quite advanced dementia) and I suspect his wife (the sweetest lady) would have killed him and then herself in another 3 months if she hadn’t done it.
You took the words out of my mouth.
For the OP, here’s how I see it: you can be responsible for changing diapers and feeding and bathing, etc. for your mother’s final days, or she can be put in a place where they have round-the-clock care by professionals so that you can visit as often as you like and spend the time on things like conversations.
My mother-in-law went through Parkinson’s and refused to go into a nursing home. In fact, once there, she behaved as badly as she could in an effort to get kicked out because she thought if we ran out of nursing homes, she could come back to the house. But the reality is that a nursing home is exactly where she needed to be. Even home health care didn’t work well (especially when she kept telling the girls to go home because she refused to admit to the true level of her needs; you notice the similarity to your father in sending help away - my perception of this is that home health care is just as disruptive and intrusive on normal life as living in a nursing home).
As Omar points out from your own post, if there’s perhaps only a year left… hospice care normally starts at 6 months from when death is expected. She is at the end of her life. As a family, I would strongly encourage you all to spend less time changing her diapers and more time enjoying her company.
So whatever you do, do not give up your career to care for your mother. If your father is the only care provider left and he wants a nursing home, then respect his decision. Obviously, there are a lot of underlying family problems; spend these last months building the relationships as best you can
I have no experience in this matter, I don’t know you, and I don’t know your parents. But, I really feel for all of you. There is no great outcome here; just the best you can do.
As I said, I don’t know your mother, so I don’t know what kind of woman she is. But, I wonder - might it be less traumatic for her to be moved into a nursing home while she is still somewhat lucid and can get some kind of grasp on what is occurring (and even have a hand in the decision-making, if that’s possible and appropriate)? From what little I know of dementia, it seems like it might be more traumatic to her to move when she doesn’t understand the why and where of the move (and possibly even the who). Is it possible that giving her time to adjust to the new living arrangements might make things easier down the road when she is not lucid?
I wish you well regardless of how it turns out. I am dreading these decisions in my own life, and I’m at an age where they will be coming much sooner than I’d wish.
My Grandpa had home help for a year or so before it was just too much, and his daughters inisited on a nursing home. The aides were so mixed- some were OK, some were awful, some wouldn’t help with stuff that needed doing, some never showed up on time, and one got caught stealing, which particularly sucked as she was the one he liked most.
He was massively opposed to going into a home, and yes, his dementia had got pretty bad by the time they got him to go, but he really liked the place. It seemed really nice every time I went there, and when we took him out for the day, he’d sometimes just keep asking when we were going back.
What does your mother think of the idea? You’ve said what you think, and what your father thinks, but was it something you ever discussed with her?
I’d suggest trying to find somewhere good and close enough that your Dad can easily get there, that does respite care as well as long term, and try it for a week or so. If it doesn’t suit her, well, it’s just a week to give your Dad a break, if she actually gets on OK with it then it can become permanent.
My father passed about two months ago after more than a year of decline. I have no sage words for the OP but they do have all the compassion I can offer.
One thing that worked very well for us is that the family were all on the same page with almost everything. My mother is in her 70s but sharp as a tack and even though my brother, sister and myself have had issues through the years we all put the effort into reaching a consensus.
I’m the one still in my home town so I did more day to day things than anyone but my mother. In fact much of what I did was giving my mother a few hours off as many days a week as I could. My brother and sister contributed where they could.
When my father needed to go to a nursing home, it wasn’t a choice. It was a necessity. And in some ways it was the best thing for both of my parents. My father needed more care than he could have been given at home and my mother resumed getting full nights sleep.
Putting someone in a home doesn’t have to mean you’re shoving them out on an ice flow. My mother visited almost every lunch and dinner time to help feed my father (he had swallowing issues) and I probably spent more time with him in the last six months of his life than I had in the previous few years.
There is a certain inevitability in end stage care, sometimes making the best of what options you do have is the best you can do. My father’s passing brought my family closer together. It doesn’t always work that way but I hope the OP and their family can work together to find a way to work together.
When my brother in law was terminal, the one peice of advice we got over and over again from people who had been there was “I wish we would have gone to hospice sooner.”
We didn’t - he didn’t - he never really wanted to admit that he was all that terminal. The strain of home health care was incredible, even with paid aid. It tore the family apart. When he did make it to hospice - he was only there one day before he passed - but it was the best place. It was homey and comfortable and the staff was there to really support everyone.
My advice, having been there…I wish we’d done hospice sooner.
I’m very sorry about your mother. I wish you all the strength you need.
When my mother started her decline (probably brain cancer, possibly strokes) I ended up putting her in a nursing home after exploring other options with my sister. I was surprised that it didn’t end up being an upsetting experience for my mother at all (but by then whatever the disease process was had exterpated the memory that she’d been a 3-pack a day smoker her whole life). She lasted 3 months. Neither my sister nor I have any regrets about the choice.
Odd little side note, it turned out that the nursing home we chose was the place my mother had worked at years before as an aide, and one of the nurses there remembered her. It seemed sort of meant to be, at that point.
Aware of it.
You have my condolences. Make sure to save a couple weeks of FMLA for the wrapping up of her business and funeral.