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RocknaHardPlace Asked November 2015

Should I butt out: Care level and difficult family dynamics?

Spouse's sibling has P.O.A. Mid 90s y.o. parent still lives alone, very likely on borderline, resists home care-makes excuses re: refusal. Has 50+ year history of "What will the neighbors think?" Refuses microwave, refuses to use a walker (has one collecting dust). It's not a matter of education to use walker, it's apparently fear with a large dose of pride and stubbornness. Wants to use cane w/ one hand & hang on to either spouse or his sib (who now requests my spouses' help getting parent to M.D. appt.). My spouse wants to go back w/ them at upcoming M.D. visit. to meet w/ M.D.Spouse already said to parent my spouse wanted to go back w/ them, but I fear he made a mistake by telling parent he wants to get a prescription for a wheelchair and/or a walker. His parent then changed acceptance of my spouse going back to meet the doctor.
Doctor's ethnic origin has kids taking care of parents to the grave & has told parent several times--"You don't want to go to a nursing home." Sibling has found out cost of nursing home & has vested interest in getting monetary gifts (also an ongoing issue over lifetime of both sib and parents) and in 1/2 of parent's money in bank.
I feel for my spouse. Both sib and parent have been not nice to my spouse, but spouse feels an obligation to help. Spouse is frustrated that parent refuses help. Should spouse just wipe their hands and give up, as spouse may do if issues remain unresolved? (I personally would at this stage of affairs have done an end run around both parent and sib if I were in spouse's shoes and have gotten a message to the M.D. or staff at this point in time, but that's just me. Spouse knows their family dynamics better than I and what are the repercussions of not discussing things w/ their family, but I think at some point, sib and/or spouse need to put their foot down). Advice or comments would be appreciated.

RocknaHardPlace Nov 2015
Thanks to all for your advice, insights and comments. My spouse was included in M.D. visit, which may have facilitated the following: 1. Aware of BP-one med was dropped 2. Prescription for wheelchair (for longer distance transport) 3. M.D. was amenable to nursing home (possibly because doctor saw it took an extra person for assistance, though the previous thing about "Doctor telling parent they did not need a nursing home" could have been manufactured by the parent). 4. Doctor wanted to do a battery of expensive tests for a common sense problem, but changed his mind after discussion. Going to try a simple microwave show and tell as parent complains about the agency home-delivered meals, which are fine (parent's only concession to outside help). The microwave would open up so many more items she could eat. We do drop off a treat or an occasional meal if there is extra, but we cannot provide daily lunches and dinners.
And, as always, this has been a learning experience, especially as to the importance of communication and collaboration. This is all quite a juggling act. Nothing really prepares one for these issues. Thank goodness for this forum and for AgingCare.

Countrymouse Nov 2015
I understand the frustration of having well-intentioned offers of help refused. But, but.

I'll start again. One, mind your own personal boundaries. Do not lift a finger more than you are happy to do. Encourage your spouse to do the same, but be patient - don't go off on one if he gets phone calls demanding whatever because if you're annoyed too it'll just add to the stress.

The thing is. If he wants to help, he might do better to offer help that is actually asked for. Leave the caregiving sibling to handle adaptations and aides. There is of course there is nothing wrong with asking questions (though not stupid questions, by which I mean questions that imply that the other sibling is stupid), but a constant stream of "solutions" can be extremely galling, as I can tell you from experience.

Your post has made me wonder if my siblings thought I was on a money-saving exercise looking after my mother. That might go some way towards explaining their attitudes, or Attitude; but a) if so, they were hilariously wrong and b) I don't think it's generally a good idea to make assumptions about other people's motives. I kept my mother at home because she wanted to be at home. Is it really so improbable that your sib-in-law also thinks that is important? It isn't only Asian doctors who are ready to support an elder's decision to remain in her own home.

I really do sympathise. I WISH my mother would have used a rollator much earlier on. I WISH she'd used her hearing aids as she was told to by her audiologist. I wish, come to that, that she hadn't stuck her head in the sand and refused the very nice apartment that my sister found for her ten years ago… But then look at it from the elder's point of view. Put yourself in her shoes and see how you'd like it. Somebody telling you you're too decrepit to go without a wheelchair. Someone telling you that you do love microwaves really (even though you really don't and you're not interested in learning to use one). Somebody asking what's so great about your home when you could be in a nice modern facility with a bunch of people you don't know from Adam. It wouldn't be long before you found a good off-label use for your walking stick, would it?

I do also appreciate that if your husband is the helpful, dutiful type it is going to be incredibly hard for him just to nod and smile and offer to get the groceries when his mother says she's managing fine. It is very difficult not to want to prevent trouble and to solve problems. But, so far at least, this is his mother's life and they are his mother's decisions. He should get gold stars every time he provides help with something she or sibling want done, but resist the urge to tell them what to do - and crucially, feel free to decline to help if he's too busy or he's being asked to contribute to something he thinks is a terrible idea. That is what the Model Auxiliary Caregiver is like, and I know it isn't easy. But that is why it is also optional: if you are not permitted to be in charge, then you don't have any responsibility and you can please yourself how much you do or how often you're in contact. If he keeps pushing, his mother is just going to dig her heels in all the harder and he'll end up feeling worse.

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freqflyer Nov 2015
Rovana, you are so right but unfortunately sometimes guilt takes over.

I wished I had set boundaries with my parents 7 years ago, maybe life would have been easier for not only me but for my parents. I know I had enabled them which helped them stay in their single family home, which was too much for them to maintain.

If only we had a crystal ball to see the future, then and only then would my parents had made other choices.

rovana Nov 2015
Babalou, the doctor probably DOES think that any woman in this situation should give up her life. I'd make it very clear to all that I'm not willing to do any such thing. The sooner this "option" is off the table, the better. I suspect that refusal to speak up at the start is the cause of many burnt out caregivers getting trapped. Saying "NO" firmly and refusing to discuss it is the best way to prevent a lot of trouble.

freqflyer Nov 2015
Rock, since your hubby's parents are in their 90's that means some of their children are seniors themselves. Good heavens, seniors shouldn't be trying to take care of older seniors, we just don't have the energy any more are we are dealing with our own age decline. Hey, who's going to pick us up when we fall?

One way to make the parents start to hire people to help is to stop enabling them by running over to the house to do this or that. We stopped shoveling my parent's snow about 3 years ago, we just couldn't do it anymore. We heard a lot of whining, but eventually my parents found someone else to shovel. Same with groceries, we now use on-line service with home delivery.

Forget about inheritance. If one has stubborn parents they will live forever. I am dealing with my Dad [94] still living in his house but now he had no choice as he had to hire caregivers, once my Mom [98] had to go to long-term-care after a serious fall, to help him as he became a major fall risk. Yikes, the monthly cost for him is around $20k a month, yes a month.... that was an eye opener for him. Wait until he see's Mom's bill for long-term-care.

Such poor final planning on my parents part... it shouldn't have been this way, but would they listen to me, nope, I am just the "kid" and what would I know :P

RocknaHardPlace Nov 2015
Thank you for your insights. Am detail-oriented, so I shall come back here at some point and fill you in on what occurred.

BarbBrooklyn Nov 2015
I'd ask the doctor why when he says you don't want to go to a nursing home. Does he think the patient is better suited to Independent or assisted living. If the doctor assumes all nursing homes are bad, I'd challenge that assumption in front of the patient.
What does the doctor propose? That one child give up her life? I would really not let those comments go unchallenged.

Sunnygirl1 Nov 2015
If your spouse's sibling really wants what they suspect as being their inheritance, he needs to step up and do whatever it takes to provide protection and care for the parent. That might include a rest home. Dad may have to self pay for care. Those details would need to be worked out with the advice of an attorney. You can consult to see if there's evidence to get guardianship. But, if he wants to avoid nursing home care, he needs to find other options....regardless of what dad says.

He may be resistant, but if he's frail, ill and incompetent enough, there has to be intervention, one way or the other. Sibling may have to move in and provide that care, bring help in, move dad in with him, or some combo, but he'll have to step up if he wants to avoid nursing home.

I'd let that "in charge" sibling figure it out. And if he didn't, I might let him know that I was sending a letter of concern to dad's doctor, certified mail, letting the doctor know that dad was at risk and resistant. Regardless of his dislike for rest homes, the doctor has a duty to warn authorities of an adult in danger.

Other option is for your spouse to petition courts to get guardianship. That's a rough road. There's much to consider when doing that. You still have to deal with all the troubles of getting dad help. I would consider that very carefully first. I might petition that someone else be appointed. That puts more pressure on the person responsible to take action and protect.

For some reasons, many families can't speak the truth to each other in a beneficial way. There are so many hangups about guilt, control, intimidation, etc. It gets in the way of taking care of important health and financial matters. Sadly, it rarely changes. Good luck.

Gusness Nov 2015
Yikes. So I would ask if your spouse and his sibling are on the same page? If they are then they could team up if not then that's a bit more complicated. If the sibling wants help from your husband than I think it's fair he be treated equally. You can't ask for his help and then tell him to get lost when he asks questions or has ideas for his parents' care.

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