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

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.

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.

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.

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.

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.

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.

Talk to your parents, her parents. Tell them your concerns. Find out what plans THEY have in place. Do they have POA's chosen? Do they have all their documents in order? Have they been reviewed recently? If either of you have siblings are all the siblings in agreement with choices that parents make? If they are not now tensions will rise later.
Make it VERY clear what you can and can not do, what you will do and what you will not do. (can and can't, will and won't are totally different)
I also suggest that you talk about this with your spouse. What do you want her to do for you if something should happen to you and what she wants you to do for her as well. Again, can, can't, will, won't are important.
There are Advance Directives, Living Wills that you can complete. A document called a POLST ("Practitioner Order for Life Sustaining Treatment" is much more detailed than a DNR) is a great document to have. It should be with you all the time. (It might be known by a different name is some States.)
Most important...be honest, be open and have these discussions.

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.

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.

Assisted living is a great option - that’s a solution . Go tour some or send brochures to your parents .

This is a great subject for a new book or at least a brochure. There must be something written on this.. An elder attorney may have some good ideas. Try to find one out there and report back what you find. At the very least, having an Estate Plan, a Trust, Will etc. ready should bring some peace of mind. You’d need a lawyer to make that all official. It’s good that you are thinking about this now. Many folks drift along on auto-pilot and don’t think about it until a crises occurs. Thanks for bringing this to attention!

There is really no way to beat around the bush about it, whether the discussion is with your parents, your spouse or your children. If your feelings are that you do not wish to quit your job, move to another state, have sleepless nights, wipe bottoms and wash soiled linens, whatever the case may be that presents itself...etc... then you need to state that. Say I will help you find a good facility close to me that can do all of those things and I will visit as often as possible and I will manage your bills and file your taxes, but that is where the line is and I will expect nothing different in return should I be the one needing care. There is nothing wrong with saying those things. I think the wedge you mention will happen if the party you are talking to doesn't agree at all and starts throwing things around like "your mother and I worked two jobs to put you through school and this is the thanks we get?". Or what if the affected party is you? What if you get diagnosed with MS at the age of 45. Do you expect your 45 yr old spouse to place you in a facility and go on with their lives? Everyone's situation is different and you have to do what is right for you. The scenarios are endless and I think you don't really know how you're going to react to things until they happen.

If we are all lucky, we will live long productive lives and then drop dead one day while doing the very thing that we love. No regrets. No one will be inconvenienced and no one will have to make any decisions. Unfortunately, very few of us will be that lucky.

You are both on the right track with this! Use your experience with your parents care to help you decide what you want later in life when/if you can’t care for yourselves.

I know that I will NEVER ask my children to take me into their home. I have already made them promise not to do this when/if the time comes. After caring for my MIL and now my own mother, I would hate myself if I distrusted their lives as much as my own as been effected. My MIL had Frontal Temporal Dementia (we moved her in with us) and her care changed almost weekly, if not monthly. Sadly, she made my husband promise years ago to never put her in a nursing home. We suffered through so much with her, and it almost killed my husband to watch as his mother slipped away so quickly and became a person that we didn’t know. It was a sad blessing when she passed 3 years ago.

My own mother, who has lived with us for the past almost 5 years independently, now needs constant help and care after having Covid and a bladder infection, and being hospitalized last May for about 3 weeks. She then spent 4 weeks in a rehab facility (nursing home) for physical and occupational therapy before coming back home to her basement apartment. She now does not do any exercises, barely moves out of her recliner and for all intents and purposes acts like she’s just waiting to die. She has mobility/strength problems, cannot dispense and take her medications properly, cannot fix her own food, cannot take a shower by herself and barely can dress herself. I have cleaned up more fecal and urine accidents than I can count in the past year because she is now quickly becoming urine incontinent with episodes of fecal incontinence occurring occasionally, but more then I could ever have expected. I had to quit the job that I loved to help care for her. She’s very lucky that I was able to, because without my husband and his income, I could have never done this and she would have ended up in a nursing home.

I hate my life and now know that I am not cut out for caregiving. But, she fears nursing homes so much that she has said that if she had to go in one that she would stop eating so that she would die quicker, yet 5 seconds later she stated that she didn’t want to be a burden to me (????). The problem is that she is on the fast track to moving into a home because she refuses to try to keep up her strength. It’s almost like dealing with a stubborn 3 year old in the body of a 84 year old.

I believe that our elders still view nursing homes as some kind of institutionalized hell because they don’t realize how much things have changed. Most care homes are less institutional and more home like.

You are on the right track with talking with your husband about what you do and do not want to happen. I wish you and your family the best.

When my parents were in their sixties, they discussed getting long-term care insurance, because “they didn’t want to be a burden to me,” (an only child). At the time, I really didn’t consider taking care of them, in the future, a burden, but when it became such, (when my mom got Alzheimer’s), Assisted Living/Memory Care just didn’t work, so Hubby and I became the Assisted Living/Memory Care facility. Her mind was too far gone to realize the trying situation that that put us in: adjusting job schedules so someone could always be with her, working less hours to accommodate that, etc. So, when everyone is of sound mind, plans can be hypothetically made, but, “the best laid plans…”

Go to the AARP website they have some great resources on starting the Caregiving conversation with your Parents. Hope that helps you get the conversation started!

The most important boundary to set is your front door. Never take a parent into your home, under any circumstances. Make that abundantly clear to them as soon as possible.

I'm 64, so the same age range as your parents. I'm caught in a (long) caregiving season to my 94 year old mother, and my two children are in your shoes - witnessing the life changes that have been thrust on me.

Because of this, they are the ones who have initiated the conversation about the future with me - as you are wanting to do, and rightly so.

Let me say that I have never asked them to care for me like I'm caring for my mother. I don't expect them to sacrifice their lives - I don't believe that they should feel obligated. They don't owe me for changing their diapers.

They have told me that they will see that I'm cared for and will not place me. They will do their best to keep me in my own home - they've talked about a tiny home - near them but with caregivers. They don't want to stop their lives - as I have done - to be my caregivers. Sounds like a plan to me. I told them that they can put me in a facility if they want to but they have decided that's not what they want.

However, I'm not holding them to anything - I'm not trying to extract promises from them that they may not be able to keep later in life. That's not fair to them.

I am absolutely praying that it will never come to the place where I need care. I'm trying to stay healthy and so far so good.

My advice is not to make promises that you'll end up struggling to keep.

Peace.

Unless you're all willing to give up your jobs/careers and all your free time, please meet with an Elder Law Attorney to discuss placement and how to finance it. Dad needs to look at his own care, post retirement or incase his health fails.

I applaud you for thinking about it. In my experience most people kick the can down the road. Caregiving expectations destroyed my relationship with my husband’s family. They are dead to me.

Write a "living" will and share it with your parents. In it, discuss your feelings about being unable or unwilling to provide care for them for the rest of their lives. Start looking at local/for hem or local/for you and start talking about moving into such a place while they are still lucid and able to make friends. (Say it nicely - I'm writing fast). Explain that if anything medical or otherwise happens to them - especially if it's a total surprise, that you want to have provisions ahead of time. You might need it to be in writing. Check with a lawyer or notary. See if possible places they might want to live have waiting lists and is it necessary to get on the list now. See how much of their funds can be earmarked for a small-large apt. Check out the place, eat in the main dining room, not one set aside for salespeople. I don't have time to continue, but I've done this at least 7 times so please feel free to contact me next week. Good Luck, Nelle Htur

you are very smart to be doing this now and knowing your parents wishes and setting up some legal documents like trusts,wills,health care proxy , transfer of assets(via trusts) to protect against medicaid in case your parents need home or institutional careetc - i cared for both my parents in the last few years of my life and all this was setup years ago.....its devastating to watch your parents decline - my mom just died in march 2023 and the last 6 months of her life were really hard but i knew she wanted to die at home and so her wish was fulfilled albeit it was hard to witness but i was next to her when she died peacefully....have the conversation with your parents and if you are all on the same page, go to eldercare attorney and setup documents stated above.

Mdh9696: I vow to never put my daughter in the situation to take care of me as my mother did - I had to move out of state to take care of my mother.

You can discuss this from a different angle. Sadly, I have seen adult children need care, often surprisingly to them and their family. Obviously, the risk is greater for elders, but not confined to them. It is sad but quite useful to understand what is important for individuals and what they expect. If they don’t want to deal with it now…Then you know how things will be later and can decide how you will manage and what you can expect of yourself.

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.

I join in applauding you for realizing that this topic wants discussion. I have one caveat: don't set yourselves up to fail by attempting to make binding decisions.

The saying is: "if you want to make God laugh, make a plan." You can usefully explore your ideas and principles and become more aware of what your expectations are, but no one can factor in how they will feel about events they can't predict and have no experience of.

What about the current situation, with your FIL project-managing his mother's move? What do you and your wife both think about the decisions he is making? Hero? Control freak? Fool? Martyr?

Thinking about prompts and resources:

1. Recognize and accept where responsibility for your parents' future wellbeing lies. It lies with them as individuals. You can think about what kind of support you would (if possible, probably) be prepared to offer if called on, but the major decisions will not be yours to take; and much heartache is caused by people's feeling responsible for situations over which they have no (legitimate) control. So: once you and your wife have reached broad alignment, the real discussions need to take place with your parents.

2. Google "strengths-based assessment in adult social care" and do some background reading. This will help to avoid those surprises you mention, the chief of which can be the shock realization of just how *many* different and complex factors and processes are at work in any given person's quality of life.

3. Get a copy of "Being Mortal" by Atul Gawande.

Make all your plans first. Then approach the rest of the family to meet and discuss their plans. Chances are they don’t have one.

It's a very sensitive and difficult discussion, but one that needs to be made between adult family members. All adults should set up durable powers of attorney (POA) for medical and financial matters (they go into effect if a person becomes incapacitated and is unable to make decisions for themselves). If there are assets, there should also be a will. And most financial institutions have their own POA forms, or ways to assign "trusted" people to act on behalf of the person. Medicare and Social Security also require names to be on file in order to be able to speak on someone's behalf. In addition, all adults should have a living will that states their end of life wishes. An attorney will be needed to do these documents if there are assets. Just going through this process of having the needed legal documents will clarify a lot. Then you will know what their wishes are for care, if they become incapacitated. Much depends on their financial situation and resources. At this point, the family has an opportunity to think about what they can do to help when the time comes. Family members' own situations may change over time. It's best to plan for the worst, assuming that at some point in our lives we may not be able to care for ourselves.