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Respite care

Stagiaire Fash

Veteran

I’m looking for tips on getting my mom to accept respite care. She is my dad’s sole caregiver and seems to think she doesn’t need or isn’t entitled to assistance, but is clearly very stressed. Have you ever tried to convince someone not to do it all?

Update: little sister, who mom is much more likely to listen to than to me, has agreed to take up the topic of respite care with our mom. I’m feeling very hopeful!

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18 replies

Latest reply was from SW prof

ophelia

Veteran

No tips. Some people won't really want it. Alz.org does have suggestions.

https://www.alz.org/help-suppo.....spite-care

https://www.dementiacarecentra.....spite/amp/

However, should the need arise & if money is available, she can hire aides to sit w/ your dad overnight. This may let her get a good night's sleep, which is crucial.

SarahD8

Veteran

I have tried and tried and it absolutely did not work. Partly -- or really mostly -- because my dad (the caregive-ee) would not accept aides in the house. Finally I realized that to my mom, having this (probably last tho we're not saying that aloud of course) phase of life with her husband be calm and free of conflict was a higher priority to her than getting out of the house. So my sister and I stopped pushing it and everyone is much happier.

So my advice is to try to probe and really listen to what your mom needs and what would truly help her -- and then try to facilitate that, rather than what you think she needs or should want or what you would want in that situation.

Sorry if this sounds like a lecture, really I am lecturing myself!!

Stagiaire Fash

Veteran

Thanks Sarah. If she could be nicer to him, and their lives were “calm and free of conflict”, I wouldn’t push it. I don’t want him to live out his days with the kind of nasty she gets when he’s done the same dumb thing 18 times. “Do you see what I have to put up with?” makes me want to say “get used to it and learn to deal with it better” but I’ve been saying that for years. She doesn’t. She can’t. He would have a hard time with a stranger. I hope that they’d be able to find one of the nurses he used to work with who wants a little side gig for a few hours a week. Some of them are wonderful when he’s in the hospital as a patient. He isn’t going to get more accepting, so think they should start pronto.

Thanks Ophelia. This quote, from the Alzheimer’s link, describes my mother’s issue perfectly: Guilt: You may believe that you should be able to "do it all. "Seeking help does not make you a failure. It's important to remember that respite services benefit the person with dementia as well as the caregiver”.

My mother is much closer to my sisters than to me; I’ve appealed to both of them with the idea of getting help for her.

rachylou

Veteran

Sarah makes me wonder if instead of help for your dad, she’d be open to help with the house. A mother’s helper, a personal cook…

Stagiaire Fash

Veteran

RL, hm, that might work. I have looked into meal services for them. I don’t think she’d like the whole thing delivered to just heat up, but some of them require just a tiny bit of effort. I think she’d enjoy feeling that she was doing something while not needing to do the whole thing.
My son doesn’t think she’d accept any help. He says “this is the woman who doesn’t want me to get my own orange juice, even though she knows damn well I can; it has to be her”.

lozz_oz

Veteran

I sympathise and empathise with your situation. My father was my mother’s care giver. He resisted any outside help as he said my mother wouldn’t cope with others coming into their home. I basically became the glue that held things together until it didn’t.
The only respite my father got was when my mother spent about 4-5 hours once a week in a day program with others.
Hopefully your sisters can be of some assistance in this challenge.

SarahD8

Veteran

Mmmm. You are trying to get your mom to do less really for the benefit of your dad, no (so that she won't treat him so poorly)? That seems like an extremely tricky needle to thread.

I hope your sister is able to make some headway!

Stagiaire Fash

Veteran

Thanks Sarah. Our older sister is reportedly going to talk to Mom about her feelings about it. In true Full-Court press Style, I’ve even asked their financial advisor if he could ask if home health care is something they should budget for the next time they meet with him. (they’ve been reworking their will/plans).

ChrisM

Veteran

Deleted.

ophelia

Veteran

HHC budget: YES.
Part of our screwed up system: disease can bankrupt.
Remember there's really only one alternative.
Hopefully your siblings are on top of this. Otherwise you might want to ride shotgun on them so to speak.
But there is usually only one who takes the reins.

Stagiaire Fash

Veteran

Ophelia, thanks for the concern. I probably just made a mistake by bringing it up with my mom. She typically assumes my side is on the wrong one. When she solidly said no, she doesn’t want respite care now, I pointed out that when there is an emergency, it will be even harder to make arrangements and for him to accept a new person. Still zero interest. I told her then she needs counseling/therapy to help deal with the emotions of dealing with his disease. Probably shouldn’t have gone there, but I did.

Sarah, sorry if I’ve been obtuse about your parents. I appreciate your empathy and wish your parents the best, with peaceful and happy days (and good sleep at nights).

CarolS

Veteran

Boy, I know how very difficult that can be. My late in-laws had a very hard time accepting help, too. One can try to conversation about the need to put ones own oxygen mask on first -- you can't care for someone else if you don't also take care of yourself. But honestly, sometimes people reach a point where they simply can't see a way out. Am I reading correctly into your post that your dad has some dementia? Perhaps there is a nearby Alzheimer's Society or similar organization that could offer some information and support for your mom -- maybe she and your sister could go meet with someone together to get some ideas how to not burn out the caregiver. Maybe there's a day program your dad could go to a couple of times a week that would give your mom a short break? Again, I don't know his situation so I apologize in advance if these suggestions are inappropriate. They are things we tried or that were suggested to us in our journey.

Stagiaire Fash

Veteran

Thanks CarolS. Much appreciated.
My brilliant, funny, handsome dad who used to detail the surgery he’d performed and interesting office cases he’d dealt with that day at the dinner table every night, who won trophies at our local little tennis center, who was lector at mass, gave us our baths every night, tended vegetable and flower gardens and the trees and lawn in our 1+ acre yard, has given up tennis because he doesn’t know how to move on the court, no longer reads for pleasure because he can’t remember what was at the beginning of the page, and has to be reminded to fill the bird feeder and how. The beds have been filled in and a lawn service has been contracted. Reading the newspaper is still part of his routine; on our recent visit, he pointed out to me (several times) a story about a global pandemic. He is still very caring and very dear to my son and me. One day he will slip away entirely. We miss him already.

Bijou

Veteran

Stagiaire Fash - what a heart breaking post and something that most of us on this forum have either dealt with or will need to deal with in the future.

I lost both of my parents in parts too through disability and dementia, it made for a very tough 10 year period that took its toll on me and my siblings.

We had a similar issue with my Father when it was obvious that it was dangerous that he was still driving, yet to take away his licence took away so much of his personal freedom. It is hard for Parents to relinquish control to their children, for my Father his Parkinson's Specialist was a acceptable authority figure and was able to convince my Father to relinquish his licence before something bad happened, which was such a relief for us all.. If you can work out whose advice your Mum will listen to, that is the first step.

Cardiff girl

Veteran

My father had dementia too so l completely empathise with what you and your family are going through.There are no easy answers but l wish you all the best as you attempt to support both your parents.

Stagiaire Fash

Veteran

Bijou and Cardiff, thank you so much for your empathy! My dad hasn’t driven for a few years; as of this summer, he no longer has a license. Good advice to figure out who our mom will listen to. I know that is my little sister & my older sister’s husband on the first tier, then my older sister, my younger sister’s husband, and then me. I should not take this personally; it is to a great extent the result of my parents’ understanding of gender roles, but it will likely always sting. Still, I’ll be more likely to get her to get help—if not in the home, then help dealing with her emotions—if I have my BiL talk to her, so that’s what I need to do, for my dad’s sake.

Our parents’ aging is something we all have to deal with, if things go as they should. It sounds like you were both quite young when you dealt with it. Thanks again for commenting.

CarolS

Veteran

Your dad sounds like an amazing man, Stagiaire Fash, and it has to be unbearably hard to watch him decline.

We lost my MIL to this, and my mother is now disappearing the same way.

Sending a big virtual hug and wishing you all the strength, patience and perseverance that this journey is going to take.

SW prof

Much sympathy. We went through this with my mother having dementia and my father insisting on doing it all. Eventually he couldn't, and they gradually got more and more help, although even the last months when she was in a nursing home with good care, he insisted on spending 12 hours a day watching her every move - and almost killed himself with exhaustion. Pleading by my brother and me to cut back had no effect. I think what ultimately convinced him was meeting other men in his situation who *had* gotten a caregiver for their spouse, and been glad of it. I don't know if your parents have any friends in a similar situation, but my parents were more willing to listen to peers. Best wishes. It's so sad that this situation occurs so often.