Parents caring for the parent support thread (Part 1)

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@psychmomma my parents made it clear to me, if they had dementia, to just shoot them. It made it easy for me to allow mom to die after refusing food and fluid. My father is also healthy as a horse and cannot care for himself, and I doubt he’s oriented enough to think about living and dying. But, his ability to speak real words or thoughts are too impaired for us to know. I struggle as I knew he would be horrified to know how he is living.

@MaineLonghorn what a roller coaster! I hope this is a forward trend for your dad.

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My mother had a type of dementia that featured dramatic fluctuations in ability, on her better days she literally asked my husband to kill her and asked us to help her die. It was so very sad as she was not on any life prolonging drugs or treatments. I could let her die, but I could not help her die.

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@somemom - My mom attempted suicide when she was first diagnosed with ALZ. She didn’t tell anyone what she was doing and my dad found her and called 911. She asked me repeatedly over the year to help kill her.

I feel the same way that I can let her go naturally, but could not intervene to hasten her departure. The best I was able to do was sign her DNR and be clear that we are doing comfort measures only. It’s heartbreaking.

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"I feel the same way that I can let her go naturally, but could not intervene to hasten her departure. "

The point of my longish post above was that in practice, things aren’t nearly as simple and can be disturbingly murky. In many cases, we still end up with quite a bit of responsibility in deciding what is “natural” and what is “intervention.”

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After my dad died, I had many second thoughts about what I did and did not do. But now, almost 6 years later I am at peace. I was a good enough mother, just as I was a good enough mother.

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Dad has made it clear he wants to hang on for awhile, even if it means a lot of intervention. I guess we’ll see how it goes.

Middle son is ensconced in my folks’ home now. He will be the caregiver from 7 pm until 7 am, five nights a week. He’ll need to learn how to take vitals, but that’s about it. He’s a night owl, anyway, so this won’t be too much of a stretch for him. Dad told him he could sleep during the shift, but of course Son knows he can’t do that!

The advocate overseeing the caregivers says that Son is learning quickly and is very conscientious. I’m so thankful this is working out. Son needed a job for this year, until his Syrian girlfriend graduates, and my dad needed more caregivers. Son has made it clear he will be happy to help out in other ways without pay, such as giving Mom rides to appointments so that the daytime caregiver can stay with Dad.

MTA: Whoa, Dad must be feeling better, because he’s back in his take charge mode. He wants to talk to the advocate about reducing other caregivers’ hours since Son is there all the time. Uh, no, Dad, Son needs to sleep sometime. Dad doesn’t get it that at least for awhile, someone needs to be officially on duty 24/7. I’ll let the advocate break the news to him.

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ps to my post: I was referring to a situation with a parent who is not legally competent, in this case, due to dementia…if a parent can still competently express their wishes, that may or may not be easier…

@MaineLonghorn you are good to protect your son, whose duties may end up being more stressful than expected at times!

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I know my sister would not go for the advocate, but sometimes I think we need just that. (Let me preface this with the fact that we have had 24/7 caregivers since July 1.) Two weeks ago, Dad got it into his head that he would fire a caregiver. My sister was willing to give in to his wishes. I was not. It was A LOT of drama for about a week. The caregiver was going to leave at 1pm on a Thursday and not come back and Dad and the caregiver made up at 12:45, 15 minutes before she was leaving.

I honestly believe this is our new normal. Grin and bear it.

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While my parents and inlaws have been deceased for a number of years, I follow this thread so I can help others with all of the wisdom that is presented here.

My one piece of advice is to get one’s parents names on a list for assisted living or nursing home early. One of my bridge playing friends has had to stop all of her social life because her husband has had a serious drop in functioning. We all heard “Bob” stories and the funny things that he did as he started dementia. However, in just a few weeks he has really gone down hill.

We live in a rural area. She has his name on 4 different assisted living places. It looks as if it will take months before he will get off a list. She has had look for people to stay with him while she goes to the grocery store or doctor for herself. It hasn’t been easy. They live in a largeish one story house. She recently put motion detection lights in every room so that she can know where he is.

My friend so wishes that she had acted sooner. In her mind she was going to keep him at home as long as possible. She just didn’t think that he would need it so quickly.

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Ugh, dad is getting REALLY difficult to deal with. He asked my son to take Mom to church today. Since Son is trying to get on a work schedule of 7 pm to 7 am, he explained he really needs to sleep in. Dad insisted, though, and Son said OK.

In the meantime, my uncle found someone else who could take Mom to church. Well, last night, Dad called Son down and told him he wants him to give her a ride, anyway, because the volunteer lady always runs late, and Dad also wanted Son to hear the guest speaker. #&@&! My sister was in the room and said Son handled it very well, explaining he would do it this time but CANNOT in the future. I am so furious I have steam coming out of my head. Dad still thinks he can “convert” us back to their church and believe me, that’s not happening. I have to decide whether to let it drop for now, since Son handled it, or call Dad and tell him how inappropriate that was.

We will have a difficult phone call with Dad today. We will first tell him that his two options are:

  1. 24/7 care (he doesn’t want to pay for it).
  2. Rehab or skilled nursing facility.

When he replies that he won’t do either (and I’m 100% sure that’s what he will say), we will tell him that if he’s going against the advice of the family and the advocate, my son will leave and the advocate will quit, taking the caregivers with her. My sister’s new is inflexible and she will not be available for rides or other help.

In the meantime, I’ve been informed that my SIL, who has serious issues and probably would qualify as disabled, will be staying with us “for a week” while trying to find an apartment in our town. DH’s younger brother says she needs “handling.” I have made it abundantly clear that I will not be helping in any way at all.

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@MaineLonghorn You are absolutely correct to draw the line with your dad. If not, he will have you all scrambling to do his bidding and it will create a lot of family tension, drama, and work. As to your son, I would give your son advice on how to deal with your dad as opposed to intervene in the middle. This will work best for your son’s and your dad’s relationship. I wonder what “handling” means?

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Hugs to you, MaineLonghorn. I really needed support six to nine months ago when this stuff all started. I am so sorry things are piling up.

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Thank you. Now my sister and the advocate are waffling and don’t think we should give him an either/or option. So what do we say when he tells us he won’t pay for 24/7 care? I guess I will just keep quiet and let them talk.

@GTalum, “handling” means helping her look for an apartment, reading the lease with her, assure her there aren’t fleas everywhere, paying her rent out of her account for her, going to find her when she gets lost, listening to her complaints about how badly she’s been treated, etc.

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Whew, the phone call went better than I hoped. We let Dad speak first. He said he knows he needs care for at least 8-10 weeks. He wants to talk again after four weeks to evaluate how everything is going. He did mention deducting room and board out of my son’s pay, and I said that wasn’t the deal. Son is making a sacrifice to be there and is also willing to help out when off duty, so we’re not going to ask him to pay. I also told Dad that Son WILL be sleeping in since he’s working all night.

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Glad the phone call was okay. I am very surprised your dad got into the room and board issue, since I have gotten the impression your dad is not in any financial bind. Good luck with all this. I know it is difficult.

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HUGS. I predict the demands and drama will escalate, not decline. I hope things play out differently for your family than they played out in my family. I am so sorry.

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@sevmom, yes, my sister and I are baffled about why Dad is fixating on money. I know he wants to leave us a good inheritance, but we told him to use his money now! I would much rather benefit my son now than me in the future.

@BerneseMtnMom I’m afraid you’re right. Son knows that he will definitely be earning his pay! He has worked with traumatized Syrian refugees as well as handicapped kids, so he’s used to difficult situations. I won’t be totally surprised if this doesn’t work out, but I can hope!

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I fully understand the advice to get on a list early. However, sometimes the need is not there yet, so it is a catch 22. Home care may be the best choice and continue to work well for a long time – until it quickly doesn’t. Hard to guess the timing.

For those of you with experience on facility waiting lists, when your loved one’s name is on a waiting list, and you pass, because the need is not yet there, do you get placed at the bottom of the list again, or does your “slot” rise to an upper level?

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@kjofkw, at the facility my parents have chosen, I believe they give them three passes before they’re moved to the bottom of the list. My parents’ third chance came up in December, just as my dad started doing really poorly. So it’s been challenging. He is fortunate that he was on their board of directors, though, because they’ve said they will make an exception for him if needs to move into a unit more with more advanced care than “independent living.” Mom has qualified for independent living (to our surprise!). Everything is still up in the air at this point.

I wish they had taken an earlier unit while they were both doing while. That’s the important thing to stress to parents - yes, you’re doing fine now, but TOMORROW you could take a turn for the worse and not qualify for independent living.

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I think it’s a combination of personality style (men of a certain generation who have lived a life of being in charge of themselves, and probably others) and the fear of losing control as they age and actually are losing control.

It sounds atrocious, but one thing that has worked well for me to function within this big picture and not beat my head against the wall in frustration, as we dealt with in laws who, in our humble opinion, would have been better off in AL, was that actually they knew what they wanted. They wanted to live at home and die at home. They remained in their home until the last 6-12 months and, honestly, in hind sight, it was the right choice. He would have loved many aspects of being the BMOC at the AL, but they could not have shared a suite, they required different levels of care, and that was important to him. She would have hated being in the SNF wing.

DH pushed them for years to move from their home of decades, but you know, it was right for them to remain as long as they could and if he had injured himself or died doing any of the large number of risky things he did, that would have been a better way to go than the last year in care homes, it truly would have been better.

I think we kids want to keep the folks safe, but I think they crave their independence as much as possible and I am now convinced to give in moreso, and also to not feel guilty if they are hurt or even die sooner due to THEIR choices. I know, I know, it sounds bad, but seniors really seem to want to have control of their lives.

Of course, if there is dementia or even post-op or mid-illness inability to decide, that is totally different.

ML, your Dad is trying to be the boss of his life, y’all can let him make his choice, but that really only works if the entire team lets him suffer the effects of his choices and he seems too physically fragile to make a good choice right now. Perhaps later, when he is himself again, then he could make a valid choice, but he should know everyone is not going to come running to save him from himself.

And, yes, you should stand up against his financial power plays, it’s, again, him trying to find a way to control again and it is so unfair when the oldsters play financial games with caregiving.