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Mdh9696 Asked April 2023

How do we discuss caregiving boundaries before they become a surprise?

Recently due to a few caregiving issues with my wife's grandmother my father-in-law has found himself becoming sole caregiver(with some help) of his 92 year old mother. She will be relocating a couple hundred miles to live with him, he will have to find a new single level apartment, he'll need to find care for her while he's at work etc. Watching this quickly unfold my wife and I realized that we've never discussed the extent of the care that we'd would be able to provide or willingness, the key feature of the discussion being boundaries. There are plenty of questionnaires that you fill out before getting married about sex, finances, house duties and other general topics that are supposed to prompt a greater discussion but we haven't been able to find one about extended family and elder care. At the moment our collective parents are all relatively healthy and in their 60s, but we want to be prepared having talked about it and having gotten on the same page for when in the hopefully distant future that changes. We don't want to be taken by surprise and have a discussion we never thought to have drive a wedge in our relationship 20 years from now. Does anyone have any resources they could provide or conversation prompts?

Mountaingyrl Apr 2023
I think it is a great idea to have this discussion with your parents and document what you agree. I would recommend doing this before there is a need for care as once the need is there, desires and opinions will change. Doing this will save everyone an enormous amount of grief, guilt and sibling/relative disagreements.

I am so glad my parents documented everything they were clear they didn't want me to provide hands on care, intensive medical intervention if something happened to them and that they would move into a facility if necessary. When my father had a medical issue which meant he could never walk or talk again, have untold other issues, and he would need a feeding tube if we wanted him to survive. It took the guilt off of my shoulders as I knew he wouldn't want that, so I denied the tube and let him pass away.

My husband's mother will not do this, and I know it will cause an unrepairable rift with his brother if she needs care. His brother has already said he will do anything to keep her alive and will move her into his house if she needs more care. He expects my husband to help but that will not happen due to distance and other obligations. I know his mother doesn't want this as we have had the discussion, but she won't document it or let him know as she doesn't want to face it.

My two biggest pieces of advice:
1. Never say you will let them live with you unless you want to provide hands on care. Even if they are capable now, this could change quickly, and you will need to be prepared to dedicate your life to caring for them.
2. Never promise you won't move them into a facility. Sometimes this is the only option if they have a high level or care.

Geaton777 Apr 2023
The best thing IMO is for you and your spouse to decide what your boundaries will be. Never promise a LO that you will never transition them into a facility. The agreement I have with my 93-yr old Mom (who lives next door to me) is that if she becomes unsafe in her home, or either one of us feels overwhelmed, that "more care" will be added, and a facility is an option. Every once in a while she makes a comment about not wanting to go into a NH but I remind her of the agreement (she's single and I'm an only child who also manages care for her older sister 104).

Reading some of the posts under the Burnout care topic with your spouse will also give you each a dose of reality.

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DoingMyBest73 Apr 2023
I know that this conversation is one that my husband and I are having a lot now that my Dad needs help. What are we willing to provide for him, first, but also, what would we ask of our children and each other? I don't know if there's a template for that, because everyone is different. I've learned in this process that I'm not good at all at hands on care — despite having been a loving parent myself, there are things I will do for a kid that I won't do for an adult. My husband is actual better at some things, but he was even surprised by that (for example, when my Dad was incapacitated in the hospital, my husband was comfortable spoon feeding him, and I struggled with that). We also realized, talking about this, that he is more comfortable doing some things with the men in our lives but would definitely want more help if it was his mother (mine has passed), and I agreed. His mother is very private, and would be upset if he had to help her in and out of the bathroom, for example. So we talked about that quite a bit. I was in a terrible car accident several years ago and my husband had to help me with all sorts of things, but I'm his wife, and that was okay. The boundaries are different for every couple, but that's our "deal" — his help with some of the things with my Dad has meant that I know that if it's his mother, then I am going to step up. Sometimes you don't have those conversations until you have to.

However, I would avoid making big promises. My parents promised each other they would "never put the other in a home" and my Mom's last year at home was brutal and I think led to my Dad's decline. And he's still very bitter he's in assisted living because part of him believes I should honor that promise that Mom made to him. But you never really know what the circumstances are going to be when someone needs help. So talking about what you both want broadly — including that you don't want your loved one to become a servant to your needs — is maybe more important that the details.

lkdrymom Apr 2023
You will be able to compile a list soon after your FIL takes in his mother. You will get to see what you don't want to do. Managing my father's life was very eye opening for me. You learn what you don't want to do to your kids. You learn how a nice nest egg can disappear in a matter of months.

What is your FIL going to do when the hired caretaker doesn't show and he needs to be at work? Has he really thought about what he is getting himself into. If I were you I'd scope out some assisted living places now before it all hits the fan and you are totally unprepared.

bundleofjoy Apr 2023
just look at any post on this website together with your wife, and ask: what would you do in this situation?

...the website is filled with difficult, painful, terrible experiences.
...a hypothetical discussion with your wife is a good idea - when the actual time comes concretely before us, answers are sometimes not clear. it's a very stressful time, when it actually happens for real.

SnoopyLove Apr 2023
I liked this recent Discussions topic longtime poster BarbBrooklyn introduced:

https://www.agingcare.com/discussions/if-you-are-going-to-become-a-caregiver-480769.htm?orderby=recent

A lot of interesting points to ponder and discuss with a spouse, I think.

NeedHelpWithMom May 2023
You found it. AgingCare has many great articles and a forum filled with loads of shared experiences of many caregivers. Spend time on this site and you’ll know lots more than you did before.

I have already told my children that they will not be caring for us. I spent so many years caring for my parents, especially my mom and it nearly killed me.

I could never allow my children to sacrifice their lives for me. My husband feels the same way. They don’t owe us anything because we raised them.

We raised them to be independent and live their own lives. That’s exactly what they are doing. I want it to stay that way.

Caregiving totally changes the dynamics of a family. We have a great relationship with our daughters and I want to continue to have them as our daughters, not our caregivers.

Beatty Apr 2023
I suppose many people just deal with it at the time. Whether they step in to help during & after a health crises, volunteer their time, help & even home. Or a slow progression, a little help each week, then multi tasks each week, then daily etc.

I don't know that you can plan that far in advance!

You may have strong values you will step in & provide the care yourself? Or maybe you are dedicated to your career & know that hands-on caregiving would never be for you? Your values will shape what you will *want* to do.

What you *can* do, at some future time, will depend on so many variables. Your own health & finances, own family & other commitments.

Why not just watch & wait.
See how this current situation unfolds for your wife's family. You can all learn from that.

Then start a chat with your wife. Discuss your & her values.

With good communication you will work out a plan when you need to.

JoAnn29 Apr 2023
Your FIL should place his mother. The cost of in home care is expensive and you cannot rely on the aides. They have lives too and things happen. If he works, the best thing is to place her.

You...start now telling ur parents to not rely on you for their physical care or financial care. You have a family and jobs that come first. Your financial future is important. Trying to work and then coming home to care for someone will be exhausting. And a man taking care of his mother?

You can offer to give him a break from caregiving. Just remember there are options. If Grandmom has money, she can be placed in a nice Assisted Living or Memory care. If not, in Long-term care with Medicaid paying. Medicaid also has in home help.

KNance72 May 2023
Assisted living is a great option - that’s a solution . Go tour some or send brochures to your parents .
luvyou May 2023
Assisted living is a good option until they are past the care the AL can provide or you run out of money. Remember, in most cases,, ALs do not participate in Medicaid -and are private pay only. Some ALs will allow you to keep your loved ones needing more care there with hospice, but your loved one needs to be willing to accept it and at the point where hospice accepts them (6 more or less anticipated life term). Also, the care in ALs is not the same as nursing home.. the ratio of staff to residents is often much lower. You may decide thst you need more one on one care for your loved one. All of thisis to say that there are no great answers, just the ones that feel right to you.
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