I didn't plan for this:

FredW

I am a fairly good planner. I was a project manager, so I know planning for things that can go wrong is wise. I have not planned for the case where I die before my DW.

We have wills, POAs, and family members assigned to take over health care and financial matters. However, I have not planned for someone to take over the primary caregiver role. As caregivers know, taking on the primary role is a BIG deal. It is life-changing.

When I (we) decided to stay in our home in rural Western PA, I knew the burden was on me to make it work. But, what if I die before my DW? That means her closest family member, her daughter, has to give up her job and either move into our house or find a place for her mom to live out her remaining years, or move Mom into her home, 3 1/2 hours away. That's asking a lot. Most remote family members have no idea what it means to be a primary caregiver.

What got me thinking about this is that I need to have my artificial aortic heart valve replaced again. The first one was supposed to last 15 - 20 years and I recently found out it is failing earlier than it should. If I do nothing, the odds are I'm not going to last two more years. My DF is in stage 4/5 and she may outlive me. If I die on the table, there is no plan.

What do you think? Should I contact her daughter and have a 'come to Jesus' discussion about caregiving?

How many of you have thought this out? Do you engage the backup primary caregiver to help make a plan now or do you just let them handle it if I bite the dust before my loved one?

midge333

I don't know the best answer to your question and I am anxious to hear what others say. I have had ongoing discussions with our adult children regarding "Plan B". In the last two weeks I have visited 3 MC facilities and my DW is now on the waiting list at all 3. Two of my offspring live about 40 min away, the third lives 1000 miles away. If I go down, my kids would stay with her until she can be placed at one of the 3 MC facilities.

M1

so sorry you are facing such a serious surgery. Yes, you should talk to her daughter right away. And you should consider a respite Mc placement while you recuperate, I would imagine at least six weeks. If she accommodates well you can make further decisions from there

Lkrielow99

I too have health issues. My plan almost mirrors Midge333. DH is in stage 5, and has anosognosia and does not believe anything is wrong. I went to 2 MC facilities and place his name on the wait list. One is our local VA and he will qualify. That’s my preference. His family and boys are MIA, but I keep them updated. If my condition becomes terminal I will place him myself.

ThisLife

Your DW will be cared for in your home is your plan. If someone else needs to take over there needs to be another plan in place. Probably unrealistic to think DD is going to give up her job. It's better to have a discussion now with whoever will be taking care of her while you are out of commission or the unthinkable happens. And then implement a plan.

SDianeL

I didn’t have a plan B and last December I was diagnosed with aggressive cancer. I had no choice but to place my DH in memory care. I placed him for 30 day respite care and they approved for an additional time while I got him approved for VA care. I would speak to the daughter and look into respite care at a memory care facility while you recover and also get on lists for memory care if you pass and the daughter can’t care for her. Perhaps an Elder Cate Attorney for trust?

JJ401

There is another option besides DW moving in with daughter. Assisted living/ memory care.

I had a health issue earlier this year and realized DH could outlive me. I’m stable now, but realized I should talk to his daughter again.
I sat down with her near the end of 2021 and discussed DH’s diagnosis. She lives about an hour away, and we only see her 2 to 3 times a year.

I talked to her a few weeks ago. I told her that I had assembled (what I call) a death book for DH. It has all the information about assets, pension, doctors, etc. that she should need. I talked again about how DH can’t live alone. I emphasized that I don’t expect him (and he would not want) to live with her. What she would need to do is find him a place in an assisted living/ memory care.
I asked her to come look a the book so she could ask any questions she might have. Will she come? I have no idea. But, based on how often she has visited or called him since informed of his diagnosis, probably not.

dayn2nite2

I think if you haven't been getting regular help from the daughter so far, you will probably be severely disappointed at your suggestion her mother move in with her or that she could take over caregiving while you are recovering.

If you don't have the surgery, you might live 2 years. She will outlive you.

If you die on the table, she will outlive you.

I think your only choice is really going to be a facility. You are not in a position to put off or not do the surgery. I would tell her you need to fix up your heart, pick a facility for her, place her, have your surgery and recovery, and when you are COMPLETELY HEALED AND CLEARED BY YOUR DOCTOR, bring her back home. If you see she is comfortable in the facility, I would give some thought to letting that be permanent if you can swing it.

Leaving arrangements to be made by others is a terrible idea.

Quilting brings calm

Something that you need to accept before you talk to your daughter: She isn’t going to do it the way you do. She’s got a job and other responsibilities. She’s not going to quit her job, move and be your wife’s 24/7 caregiver. Will she make sure her mom is taken care of? Probably - but it’s going to be in an AL/MC.

I suggest you start looking for those in your area for at least your recovery time. Start looking for onesin your daughter’s area so you can recommend ones that you think your wife would be a good candidate for.

Discuss finances, wills, etc with your daughter so she has a clue what to do if you die.

ronda b

https://alzconnected.org/discussion/70475/i-didnt-plan-for-this

That really is something to think about.

lenbury

I think a plan B is called for. Although right now I am healthy I spoke with my son about a situation where I am not able to care for her. In the short term we would have 24x7 home health care and then eventually get her into a decent memory care facility. Good thoughts sent your way.

Jeanne C.

I have a safe box with copies of all important documents (legal, insurance, IDs, etc.) as well as a flash drive with containing a spreadsheet with all account login information). My POA and my husband's secondary POA know how to access it. I included both POAs in the final review of the legal documents with our CELA. And I had a very serious conversation with his secondary POA about his care. Considering that my husband is already in hospice and I'm only 54, I hope we're being overly cautious here, but anything can happen and I didn't want to take any risks.

????

We all are in the same boat. 60% of spouses-caregivers die before the ALZ patient, that is just a fact. So we all should make plans for what may happen. My wife found out three years ago that she has ALZ. Since that time my wife, daughter and I have discussed this issue and others. I am having some heart problems and will see a Cardiologist in a few weeks. Anyway if something happens to me first my wife could not live here alone. We have discussed some in home care, and at some point Memory Care. We would not want to expect our daughter to give up her job and life to take care of her mother.

mrahope

You've gotten some excellent suggestions here. I want to add another item, just in case you haven't thought about it. My DH and I had set up wills years ago in a fashion typical of many married couples: If i go first, he gets everything, if both are gone, then the kids inherit equally. Since we placed DH in the spring, I've needed to re-work my will such that my funds will be placed in a trust for his care which DS will manage. I surely hope it doesn't come to that, but this will give all of us peace of mind.

Bailey's Mom

FredW…In much the same boat here. Had a mitral valve replacement 4 yrs ago…it is still working ok, but the constant stress and unhappiness is taking it's toll. If I had known that I would be in this situation then I would not have had the surgery, and won't have a re-operation if one is needed. No children, close family or help at all in this, plus DH has anosognosia so won't hear of a will or any legal documents. I will need to consult with a CELA soon, even though the cost is exorbitant. There is a very good chance that I will die before my husband, but if I am still living, I do not want to end up penniless when he needs expensive care. Would be very interested in what you decide to do. Good luck!

FredW

I want to thank everyone who provided their thoughts. I got more time when I found out I qualified for a TVAR procedure. They insert a new valve thru the artery in your groin. I had that done and spent only one night in the hospital. I was home the next day and resumed my caregiver duties.

I put working on plan B on the back burner.The doc told me I had 7-10 years before this new valve would need replaced.

Then they called me to let me know about a spot they saw on my CT scan they did for pre-op testing.

Fast forward to today, another CT scan, a PET scan, and an upcoming biopsy. The early results are concerning. I now definitely need to get plan B together.

Depending on what my prognosis and treatment may be, I need a fast plan B and a slow plan B.

Here’s the thing that really hurts. I can’t have a serious conversation with my DW about this. I tell her that I’m having a biopsy to find out what kind of cancer I have and a hour later when I remind her, she will ask me: “You have cancer?”

Cancer is bad news, but Alzheimer’s - it’s a horrible disease! I’m speaking to the choir here, you all know that already.

Carl46

Fred, you have raised an issue that should concern us all. We should all have a plan B in place, because none of us are guaranteed ten more years, or even ten more minutes. I fell in my bedroom last month, landing on my hip, and carried a pretty good bruise for a week or more. My skeleton is stout and well padded, but I could have broken the hip and died. For that matter, I drive daily in an environment in which every tenth driver is impaired by alcohol and/or drugs. If I were 50 years younger, I would still be at risk.

Victoriaredux

Living rural- while a retirement dream for many is not practical for anyone. Even if one just needs help for a few hours a week it is difficult to get help and if that person is late /stands you up.. there goes your plan for the day.

Since you don't have family near —I'd look for professional care managers in your area - if there aren't any —-well that tells you how well you can age in place there .

There is as you say- the slow and fast plan —but there is also the immediate plan — something happens to you - no advance planning possible — how will your wife get immediate care /oversight? How will you get help? You can try an alert button on you if you fall- can't find phone to call— but what if you can't push the button — maybe a video link that can scan your rooms if you don't report in — but that would be a headache and no privacy .

[ "I tell her that I’m having a biopsy to find out what kind of cancer I have and a hour later when I remind her, she will ask me: “You have cancer?”—

not sure if that was an example or if you are really sharing that level info with your wife — if so, with kindness, I suggest you stop— the idea will percolate in her head and the topic can cause her stress and anxiety.

Maybe seek counseling or an in person support group for you to be able to get support or vent . It is a lot to take on.]

Thank you for updating us. Glad the TAVR worked out for you .

harshedbuzz

You've gotten some great advice so far.

I would urge you to consider placement sooner. This would allow you to be in control of where she is placed, help her adjust to her new surroundings and bond with caregivers as well as verify that the choice you made was working for her.

Then you can focus on your own care needs. If treatment goes well, ideally you could consider bringing her home once you are free to be a caregiver again. And if things don't go well, she will be in the care of professionals who know her and with whom she is comfortable.

I agree that your wife's condition leaves her unable to be an appropriate member of your support team which is unfortunate. She is beyond processing the dire news you are sharing which is just sad.

Looking forward, you don't get to dictate how her daughter will choose to provide care if it comes to that. When dad was diagnosed, I moved them to me because that's what worked for me. I would encourage any daughter to do the same unless the PWD was very late stage. You might find a MC chain that has a location near her daughter which would streamline the transfer and offer a similar level of care.

HB

Worriedwife123

https://alzconnected.org/discussion/70475/i-didnt-plan-for-this

I am so sorry that you’re going through this but we shares similar concern too and my mom (she’s a professional caregiver) is my designated caregiver for my DH if I pass away. We have long term care for him and we are arranging for it to start using it next year: we will be getting my mom.

My DH is ok with these arrangements and prefers my mom over his daughter (who has been verbally against me). When I’m at work, my DH calls my mom. Unfortunately, he doesn’t do texting anymore regardless of what phone we give him.

BPS

I got on a waiting list at a local assisted living facility thinking we could move there together. They said when a unit came up and our name was next they would contact me and if I was not ready to move they would go to the next person but my name would stay at the top of the list so when the next unit came up they would contact me again. There was a refundable $500 deposit to do that but it made me more comfortable because I had options. My wifes condition got worse then she had a stroke so I changed plans and moved her into MC. I got my refund. The plan didn't go as intended but it gave me some comfort knowing that there was a plan with some options. I also had my will changed to put my half of the estate into a trust for my wife. I could only control my half and the lawyer said I couldn't change my wifes will even with a POA, so I have told my kids what my wishes are for them to put their inheritance into the trust but I can't legally enforce that.

Jazzma

This is a critical issue for caregivers, even if we're currently healthy. I strongly suggest meeting with an elder care attorney, even though it's pricey. The one I work with re-wrote my part of our will so that my half of the estate will go into a trust for DH's care (which will shelter it to help him qualify for Medicaid). We also discussed whether to take his name off the house/property/cars/etc, and changed the beneficiary of my retirement plan to our kids rather than DH (again, a Medicaid consideration). He's currently in a local MC but I bring him home for extended visits. Our local fire department has an excellent community relations (CARES) division which allows me to tag information to our address (details about DH's condition, location of the MC, etc) in case something happens to me when he's home.

For us, the biggest issue will be re-locating him to a facility near one of the kids. I've stressed to them that he has to be close to one of them, and that they have to visit (or arrange for others to visit) regularly since It makes a difference in the quality of care. I threatened to haunt them it they don't.

So glad your surgery went well.