Memory Care, Early Retirement, or Keep Pushing On?

agree. I quit my job last year to care for DH. I was 66 years old. Still

Many productive working years ahead. I want to return to work and place DH in Memory Care. I might come out even but st least I eill have my health and mental well being at the end of this.

Hi Bill,

All the responses so far vote for placement & to continue working. Only you can decide. I’m in a similar dilemma. I’m only 51 and I stopped working 18 months ago to care for DH who is probably late stage 5 and progressing slowly. I was urged by friends on forums at the beginning of my caretaking journey to live my life and get back to work, etcetera. They said I was too young and caregiving was too hard. They said it’s not my children’s burden. They all made sense in a certain framework. I am getting financial help from my oldest son and have been cobbling together resources. I tried to work part-time but caregiving is full-time plus overtime & although I really wanted to work, it left me with no wiggle room. I need to be rested and unstressed to provide appropriate care and maintain my health & sanity. Two days ago I started panicking again about my future, the burden on my kids, etc. and I talked to my daughter who reminded me that we can only proceed day by day & things are fine for now; we operate as a family not as a group of individuals. This is crucial to my existence & allows me to think collectively and holistically. I can’t imagine placing DH because we can’t afford anything except what Medicaid would provide and I don’t really know what this is besides a SNF & I can only imagine him declining rapidly there. He’s so comfortable at home. That said I fantasize about being released from this burden daily & I also feel immense joy about being his caregiver daily. Rather than try to outsmart this disease and dilemma, I have adopted the practice of radical acceptance. I’ve also just learned about Nietzsche’s concept of Amor Fati, loving your fate. I feel like my fate is to care for my DH at home until the end. Loving this fate makes life joyful. There are pros and cons to caretaking that I can weigh or struggle with, yet the facts won’t change no matter how hard I think about them. If I felt my fate was to place him, there’d be pros and cons as well that I could struggle over, but thinking about these things will not change them. You must understand your fate. Dig deep, good luck, & God bless!
Re: Pascal’s Wager:

Find a good reliable MCF so that you can entrust them to be an extension of you to care for your wife. Then you can take care of yourself, keep your job, and carve a livable life that will last beyond your wife's dementia. Try it out, at least. See if it's suitable. If you retire too early, there may not be an opportunity to go back and you've lost your income and health benefits.

makes total sense. I guess us old timers are lucky our partners got this in late stage of life. I really feel for you you’re in a bad situation working wise. I’ll pray for you

@Bill_2001 I stopped out at age 58 when much older DH was diagnosed, due to finally obvious signs. He was a constant exit-seeker and could not be alone. Also, there was literally nothing in place to support us, except for my income and his SSI at that time since he had to retire immediately with no pension. And lots of desperate measures had to be taken immediately to stop the depletion and other messes his unsupervised diseased actions were getting us into. There was no intent, nor real potential to be in "retirement" position that early, for either of us.

So, out of necessity, I took the unpaid job of being in charge of us around early Stage 4. Who knew all that meant! I have learned SO much, mostly here on these boards and much of it from you, with your chin up and keep pressing on, attitude. But I hear your heartfelt sorrow for your beloved and for your own life, as well. I share that terrible double measure of pain. We are still here. DH refused to leave the house (except alone) for a LONG time in mid-stages, so we did not have the Adult Day Care option that you have made such good use of.

After speaking with a SS rep and also lawyer, I took early retirement officially when able, just to help make ends meet. But it did not work out as I thought so I cancelled it within the 1 year time frame allowed, because here and there I am able to work part time remote jobs and once I earned more than the $19k annual allowed (imagine that as an "extra" income limit to survive on) it did not trigger the "you'll be taxed at 50% for any earnings over that amount" of my understanding. It flagged me period — as "over-earning", and thus I started receiving nothing. With no warning not only was my very modest SSI check reduced, it was withheld. When I realized something was different from what I had been told, I met with a different rep who explained I actually had to pay back all SSI "overpayment" I had received for the prior months because I went over the allowed "extra" work earnings. And I did not go over by a lot. So, we were REALLY in a bind one or 2 months, because I had no work, and no SSI. DH's SSI is not enough to cover all our expenses and it was very discouraging to say the least. Plus we had some extra legal expenses at the time from predatory action hateful steps and in-laws took and it was not a good time financially.

Anyway, since full SSI eligibility is still years away for me, it is encouragement to hope, pray, and plan, to work again full-time at some point in the future. Time will tell. I think you are amazing to handle all that you are, and I too worry that you are not able to get a break and could burn out or harm your own health. It sounds like the 30 day respite care might be a good trial run, if you can consider that? At least you will get a "vacation" from full-time caregiving and full-time work, and at this point that is total required self-care. Plus you could think of it as research for you to see how DW will do, and how you will do, if you consider MCF for a longer period at some point. You have taken such excellent care of your DW for over 8 years - that is so commendable. You will still be caring for her, whatever you decide to do, but I add my voice to those encouraging you to also focus on taking care of YOU, right now. Put yourself first for a change. Not for what funds it may save for the future, but just to be in the moment, focusing on your space to breathe and see how you feel with someone else to pick up one of your two huge responsibility areas for now.

An older, wiser than I spouse caregiver gave me that advice years ago when I was early in this journey. She placed her DH in MC early on and visited him a couple of times weekly for short periods and went on with the rest of her retirement as his less stressed wife. They were both in their 70s I think, now in their 80s and she had the means and mindset to structure their dementia management years that way from the beginning. (FWIW I think she looks younger than I do, right now lol. Full time dementia caregiving has taken a toll on my appearance and attitude, if not my physical health (thank goodness, so far)). As my dear mom used to say "to each his/her/their own". I added the PC gender inclusion. I wish you well whatever you try next. You and our forum mates are truly my heroes. These are my disorganized thoughts sparked by your multiple choice question! Yes, I think it over often and the early retirement answer for me was to reverse, course correct, get more in-home help (VA pays) and shoulder on. For now. MC was good for respite and I will choose it again for a short break, soon if DH stays stable.

Bill are you in an area with adult daycare options? That can act as a kind of intermediate care model when you aren't quite ready for a facility. Many of them do toileting, ADLs and some of the later stage care needs. My mom ended up going 5 days a week, so it was kind of like she was in memory care half the time. I would urge you to consider the long haul since you are young. If she is stage 6 she very well may not be alive in 3-5 years, and you need to assess where you need/want to be then. I also urge you not to view it as giving up if you move her. You are still providing care for her, just in a different way that meets both your needs. You are still a husband and advocate and caregiver. My mom and dad still had a close relationship after she moved to a facility and dad was able to go back to just being her husband and companion and not a nurse. But of course the financial piece is huge. I'm sorry you are facing these decisions. There is no right answer and no matter what you will find yourself with doubts and what-ifs.

Bill,

A wise man once offered great advice: The cavalry is not coming, so it’s up to us to figure out how to carry on. This helped me and many others to get creative and soldier on

Caretaking sucks our financial and time resources. Retirement usually frees up time for caregiving, but almost always at the cost of lowering income. With just social security (and/or even pensions) most of us really don’t have the financial means to pay for 24 hour a day Memory Care.

Bill, If you retire soon, Social Security wouldn’t kick in until age 62. And the earlier you take SS, the less money it is per month. Does your company’s retirement plan kick in at a certain age or after a certain time served? My husband’s employer offered a special early retirement during an economic downtime. It was really a case of retire or risk possible job cuts. So he retired at 60, took SS early at 62.

(There is a caution taking SS early. You are then heavily taxed on any non-SS money you earn from ages 62-65.)

My husband died a while back and thankfully I was able to keep him home the whole time. However, at his death, I lost his pension. I got bumped up to his Social Security but in the meantime, lost mine. (Ironically, spouses with no Social Security earnings of their own, retain their spouse’s entire monthly SS amount) Although I knew this would happen, the reduced monthly income has been quite an adjustment

Unfortunately because of your younger ages, Social Security and possibly retirement are a few years out. So this is the opportunity to get creative. What can you do to gain more free time, unload/share some of your burden and survive economically? Perhaps exchange room and board for caregiving help? Rent out your garage.? Remortgage your house? I have also sent you a private message with another idea.

Best of luck,

Soul Mate

Bill, feel for your situation as I made the decision to retire early to care for DW @ 55. Fortunately, I could swing it with a good pension and 401k and insurance. I realize I was extremely fortunate. Like you, in my eighth year also in caring for my DW. Still, the stress was enormous, and my health was failing until I got some in-home day-care help and other supports through enrolling my wife in our local PACE program. What a lifesaver for me. I can't offer advice as to what's best for you only a lesson I learned in that if I'm not healthy, there's no way I can care for my wife. Whatever you plan to do I wish the best outcomes for a healthy life for you and great care for you dear wife.

Bill I have an idea I have never seen put forth. Here goes…..

Find a caregiver who will come to your house Friday evening to Sunday evening. Offer to pay $500 in exchange for caring for her, doing the laundry and cleaning as much as possible. You find someone to rent you a bedroom maybe with kitchen privileges for Friday and Saturday. You could offer to pay $100 to $200. You would get two days respite a week for max $2800 a month.