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I am a paraplegic since 1979 and a caregiver going on 8 years. My wife of 43 years had a stroke 12/31/2011. She is 80 years old and I am 76 years old. I find the years are taking the toll on me and doing everything to run a home, from cooking, cleaning, laundry, grocery shopping, yardwork. I'm burnt out and my wife's daughters do not see my role relevant let alone see me doing everything in a wheelchair. My wife is strongly against going in a nursing home. I'm seeing her mind slowly but surely slipping away. All I get from her daughters are dejections and my sole responsibility for life to take care of their mother. Any piece of advice will be greatly appreciated.

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Hi Bernie

Your disability has not landed you a victim which is awesome.

I read your message and additional info a couple of times and I guess I get from it that you are running into typical issues with Aging in place and realizing that you have some tough decisions to make if not now, soon. And the daughters are putting in their two cents.

Do you have any impediments to making decisions for your wife like daughters having POA? Has your wife been declared incompetent?

I couldn’t tell if you were wanting to place your wife, wanting help from your daughters they aren’t willing to give or wanting to figure out how you can stay home without their help and/or interference?

Since your wife has Medicaid does she get help in the home through Medicaid? Bathing, etc?

Are you familiar with ADLs (activities of daily living)? Look this up on line to refresh yourself and read them with your wife and yourself in mind. Do this every quarter or so to make sure you know where you are with the abilities of each of you.

Call your local Area Agency on Aging and ask them to do a needs assessment to see what services you or your wife might be eligible for.

Consider all the services like online shopping and delivery and transportation for elders, MOW.

Try not to resist help out of hand when it’s offered.
If your house needs decluttering or a deep clean, get that done.

Each layer of help you get will make a big difference. If your home is not going to work long term then consider alternate housing. Get your names on lists.

The daughters may feel they have to protect their mom at some point from perceived negligence. A clean living environment, a clean mom and a general sense of order will help you keep them in check.

None of us live forever.
So the best defense is a good offense sort of mindset will serve you well. But it can’t be all bluster and no action. Not saying it is just reminding you that their perception is important.

But as you age things will be harder to accomplish so it’s good that you are starting now to consider your options.

With a mom in her 80s the daughters are going to feel a pull to pay attention and eventually you will need their help.

You may not be best friends but truly rotten kids don’t show up unless there’s a big estate.

Take care Bernie and check back in to let us know how things are going.
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BernieObispo Nov 10, 2018
Hi 97yroldmom,

You seem to have a crystal ball that you can see my situation. The subjects you brought up cannot be anymore closer than what is happening in my situation. I must admit, I been quite forbearing to her daughters only because when my wife's aids don't show up, they have to pick up the slack. They are involve in all her physical needs . . . my wife.

I very grateful of the wisdom you shared with me. You hit the nail in the head. Thank you so much, take care.
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Bernie, I feel for the situation you are in. Yes they are your step daughters BUT she has been YOUR wife for 43 years, over half of your lives. What you have done and accomplished for the both of you is commendable but there comes a time and place when you have to ask yourselves what is the best thing for the both of you. Your role isn't just relevant to her but also to yourself and only you know what your limitations are and what you are able to do for her as time passes and this situation grows in demands both physically and mentally. Do the children help out in any way? Are they in denial about mom's condition and decline? Maybe her physician would be amicable to sitting down with them and give them some hard truths to open their eyes. I am assuming that the both of you have your poas in order so as a spouse can make medical decisions for the other when the time comes. Would it be feasible for the two of you to enter assisted living together? Not sure what state you live in but your primary home is not considered an asset for Medicaid purposes unless you sell it. Hire a realtor to rent it and manage the property, ensuring taxes and insurance are paid in full on time. A financial planner would be able to help answer questions about this. Do not let them guilt you into anything and they will try. Are they the only heirs to the estate and worry about getting anything later? Just trying to figure out their motivation. Keep your head up, also contact your local senior center, they have people that will come to you if you can not go to them for information and help. Check into your local united way. They also offer some wonderful programs many do not know about.
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Sometimes it seems that all the interchanges on a difficult issue are ‘sniping’ - people don’t sit down to talk through the whole situation and see if they can reach a consensus. Could you suggest this to your step-daughters? A third party is often helpful. It might be an olive branch if you asked them for suggestions about who is knowledgeable but neutral and might be willing to help. These women need to be talking to you about options that don’t depend on you doing all the work. They may not even have started to think like that at present.

As a comparison, I have been married for 19 years to my second husband, who is a competent and caring person. This is longer than I was married to my daughters' father, and in fact longer than each of them has been married themselves. If you scrape away politeness in one of them and impoliteness in the other, they both still view him as 'the new kid on the block'. It seems to go a long way down. You have my sympathy!
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Are the stepdaughters standing in the way of your making decisions that would be good for you and your wife? Or is it more a matter of them refusing to help you care for her the way you wish to?  Is your relationship with them good or adversarial?  To be very honest, when my mother had a stroke, I and my sisters assumed she would enter a nursing home, but my brother insisted on keeping her at home with shifts of caregivers coming in for nursing home type coverage.  We warned him that this was not really financially possible for very long and that even if you have caregivers in, there would be times when the agency could not cover, etc. etc.  He wore himself out trying to do it his way - all of us sisters had to work to support ourselves and we had made it clear that we could not and would not quit jobs in order to become caregivers.  Maybe he had some old fashioned idea that daughters do that, but we disabused him of that idea. Good thing we did.  He and mom spent money that would have covered a good nursing home, went into debt, and when she died there was no estate left. If any of us sisters had sacrificed our lives financially, we would have ended up in the street.  Times have changed. You have done an incredible job caring for your wife, but if you can make your relationship with your stepdaughters a collaborative one, I think you will be much better off. Keep in mind there is no reason why they should not have their own agendas, same as you. Honoring your parents does not require obeying their commands, nor putting their wants above everyone else's.  Think democracy here, mutual collaboration in order to find the most reasonable solution for all concerned.
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Bernie, I am so sorry you are going through this. I'm sure all caregivers reading this are astounded at all you've been managing to do from a wheelchair.

I think you should what is best for you and your wife, and politely advise and inform the difficult stepdaughters as necessary but otherwise pay them no mind. They don't have the right to insist you run yourself into the ground.

If it's time for a nursing home, or some other major change in your living arrangements, I say do what you believe is best for both of you with your head held high. You are obviously the sort of kind, loving spouse any person would be lucky to have.
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