What a horrible set of choices. My condolences to your family. Caregiving is so hard. Please be kind to your father as he makes these tough choices. As someone mentioned upthread, allow him to continue to be her husband and not just another diaper changer. She can get good care in a nursing home and still allow them to have the dignity and love of their married relationship. My mom’s worst fear was of having her family have to bathe and toilet her.
She was given a 12-18 month prognosis 8-9 months ago. You’re looking at 4-9 months, most likely, and at some point very soon things are liable to go downhill fast and hard. It’s time to put the pieces in place for the endgame, as difficult and gut-wrenching as it is.
You’re willing and able to take care of her needs as they stand now, while you’re not doing anything else and you’re still relatively fresh. But her needs are not going to freeze there, and you’re not going to have nearly the same mental/emotional/physical energy when you’ve worked all day and then spent half the evening listening to your dad carping about how awful it is having strangers in the house all day, and you’ve been having this day every single day for the past 3 months.
Give up on the idea of having them move out to you. Please. It’s a horrible idea, for all of you. Your father physically cannot take care of her by himself while you’re at work, so you’re going to have to have home health aides. Your mom is going to be in a relatively unfamiliar place, with a steady stream of unfamiliar people coming in, with nothing familiar but you and your dad–isn’t that exactly what scares you about her being in a nursing home? And your dad…well, loners just don’t do well when they have people around all the time, especially when those people are strangers. We get insanely stressed by that shit and become just totally unbearable. Working a full day and then coming home to listen to your father carp and bitch and have meltdowns because he’s had no introvert time while you cook dinner while your mom asks you for the 4,000th time when she can go home-- that’s not a life I’d wish on my worst enemy.
I know the idea of a nursing home is scary. It’s an admission that you’re nearing the end of the trail, and it makes your mom’s impending death real in a way it wasn’t before, and that fucking sucks. But it’s probably the best thing to be done in this situation.
I still feel like moving them, or at least her, in with me is the best option. My mom suffers from paranoia because of her condition, and I am afraid that she would not cooperate with nursing home staff. Also, she and I were always very close, and although her mental state has changed considerably, I can tell she still finds it comforting to have me around. If she went to a nursing home where they live, I wouldn’t be able to visit her daily like I would want, but conversely if she went to a nursing home where I live, then my father couldn’t visit her.
That’s why I feel like my parents need to relocate, and that it is a compromise - I need to help them, but at the same time, I can’t sacrifice my whole life for an unknown period of time. Her tumor is stable at the moment, and we don’t know how accurate her prognosis is. One thing is for sure, something needs to change soon, because the current situation is untenable, and I am nearly having panic attacks daily from the stress.
I haven’t read through the entire thread so apologies if I repeat what someone else says.
If the father doesn’t want to ask the other kids that doesn’t stop the op from doing so. And if her mother goes into a nursing home then consider one near the sibling best able to stop by every day and check on her.
This isn’t the Op’s fault and guilt should not be accepted because of the father’s failings. Let him die alone in his homeland as his penance.
One FYI, I’ve been in 3 nursing home. Combined, about 3 CNAs spoke adequate English
I think it definitely depends on where you are, but I’ve not found this the case in either of the nursing homes my mother was in or in any of the others I’ve visited throughout the years. For the most part, the CNAs I’ve known were either young people going working their way through college or older people who’ve been in the field a long time and feel a calling to care for others.
I’m in MA FWIW.
You seem to be overlooking the fact that, while your mother is nearing the end of her life, your dad is not. If you move them both, what will your dad do after your mom passes? He will have given up his life and home where he is now and be left somewhere that he probably doesn’t want to be. His needs matter here too, and not just for the next six months. Likewise, he also needs to protect enough of his income to support the rest of his life. He may need expensive end of life care in a few years, too.
I think Pop is getting a raw deal. Lurgic is leaving mom to face death without him/her, here in America; Pop is probably expecting the same for himself. I say, that Lurgic is awfully casual about telling others what they should do for Mom. Lurgic has an excuse; WTF is that excuse any better than Pop’s? On top of that, Lurgic expects to get an inheritance, or support, for…going off to another state, leaving Mom to make money. Something is missing here.
Excuse me? What inheritance? When my mother passes, everything goes to my father because all of their accounts are in joint tenancy. He is planning to go back to Turkey after she dies. If he leaves me something in his will, fine, but I’m not planning or expecting to get a penny from him.
I worked very hard in school and many part time jobs to get myself to where I am today. It’s unreasonable and selfish for my father to expect me to quit my job in this job market to be a full time, uncompensated caregiver when he can afford to hire home aides, and doesn’t ask his other children to do anything even though my mom raised them like her own children. I AM willing to help, but we have to compromise, not just do everything his way. My idea of compromise is him and my mom temporarily moving in with me so I can continue to help out but not give up everything.
It would be temporary. I don’t expect him to sell the house, just pack some bags and documents and move in with me. The house can stay how it is and we will give a neighbor the key. If it’s true she only has less than a year left, then the family can all be together in one place without him or me making any permanent changes. My father has nothing holding him where they live now. I am their only family in this state, and he is retired and has no friends or anything where they live. I’ve taken a look at their finances because I am my mom’s POA, and he is very comfortable, so it is not a matter of money. I think it is unreasonable to expect adult children to cater to their elderly parents’ demands when we are the ones with jobs and trying to build our own futures and families.
What?! Ten dollars an hour? That’s insane. That seems like it would create an industry ripe with abuse, neglect and just plain incompetence. I mean, being a 24 hour home health care worker is NOT easy work. It seems like that type of pay for that type of work could end up leaving the client absorbing all of the employee’s frustration and/or apathy. Wow. I had no idea.
Well…yeah, it does.
Whether at home or in a nursing home, hiring help is not a license to abandon your family members. Those who have frequent visitors get better care. The cynical among us attribute this to lazy workers who would get away with anything if they weren’t watched. The more generous of heart say that your presence and personal items in the room remind staff that this person is an individual, with a past and a story and people who care for them.
I’m kind of 50/50, myself. I know that mostly the people doing this work really do care. I also know that they’re overworked, underpaid (and even underpaid, still unaffordable for most of us) and only human.
Have you ever considered that your mother might have a problem with the home health aides? I mean sure, it sounds like a home aide would take the burden off your father, but that doesn’t make it true. My mother took care of my disabled father for over 20 years , and his condition got worse and worse as he got older. And when the dementia started it was even worse. You see, he didn’t like the aides taking care of him- he only wanted my mother to do it. Not the aides and not his children. He could not let her eat a meal or sit for an hour in peace- if he called her and someone else answered , he would continue to yell for her. He was known to call her and then say “I just wanted to see if you would come”.
And while I agree that it's unreasonable for elderly adults to to expect their children to cater to their demands, I also think it's unreasonable for those children to believe they have an equal say in making these decisions. My mother kept my father home until he died- even though at least three of the four children didn't think she should. But it wasn't our place to decide.
Is it feasible to have them move into the nursing home together, with the understanding that your dad will go back to his regular home once your mother is used to the place, and doesn’t need to rely on his presence all day, every day?
So why not have just her move in with you? Is he opposed to that? Or is she?
And then what, Lurgic leaves his/her job? Or pays for caretakers (s)he can’t afford? Even leaving aside that I expect such a proposal would make the father go ballistic, and that Lurgic’s home is as unfamiliar to the patient as a home would be, it doesn’t sound very practical.
My grandmother was even worse in her daughters’ homes than her own, and every story I’ve heard of ailing parents moving into their childrens’ homes or “doing the circuit” (n months with each child) is the same: unless the parent is pretty much a living brick, they’re absolutely horrible (aggressive, reorganizing, trying to take over as head of the household). Parents who do it as a sort of “housemates arrangement” and of everybody’s voluntary will, can work; parents who do it as an alternative to a home when the children can’t leave their lives behind to care for the parent in the parent’s home, Hell on Earth.
Lurgic, you seem to be ignoring the fact, repeated multiple times in this thread, that your mother almost certainly WILL need residential care at some point. It doesn’t matter if she stays where she is, it doesn’t matter if she moves in with you. At some point, the only possible thing to do will be to put her in care of some sort. Home health aides will NOT work forever. You and your father will NOT be able to keep her at home forever. Moving her in with you will only stress her and take her away from her familiar surroundings twice.
The sad likelihood is that as her brain damage progresses, at some point it won’t matter to her if she’s here, or there, because she’ll stop caring/registering the difference.
I wish the OP well. Now that our advice has been solicited, I’d suggest the OP tabulate the results. It looks to me like the overwhelming winner in the ‘poll’ is “nursing home”.
Step back. Hard as it is to accept, these are not your choices to make. The sooner you accept that the easier you’ll find this.
Stop and think for a moment, you’ve spent 40+yrs possibly, building a home together, raising a family, facing life’s challenges together. Now you’re aged, in decline, beginning to lose your lucidity and difficult choices need to be made, do you really want any of your several children to be calling the shots and overriding the wishes of your husband? Sorry, but that’s unworkable unless there is neglect or abuse.
Yes, you love her, have her best interests at heart, and passionately feel you know what’s best. Doesn’t matter, these are not your choices to make. Would you dare to wade in on medical care for your brothers child if you disagreed with his choice? No, you express your concerns and then accept that he and his wife get to decide what’s best, (unless there is abuse or neglect, of course.)
You’ve already stated you cannot sacrifice your job and career, and moving your Mom to unfamiliar surroundings could very easy excellerate her decline such that she will need care outside of your ability much, much quicker than you imagine. You could find yourself scrambling to get a placement in a city she doesn’t reside in, or try and do so long distance in the place she does reside.
Imagine how difficult these choices are for your Dad to make, regardless of what he manifests to you, making this into a fight to get your way isn’t going to help anyone. You should be supportive of his difficult choices, and respect his wishes for them both to remain in the community they feel connected to.
What lies ahead will be much harder for all of you, it would be nice if you could help each other through it. Trying to press for what you want now, could see you entirely excluded from any future decisions that arise. Think hard before pursuing your way.