Memory Care, Early Retirement, or Keep Pushing On?

Bill_2001

Hi Friends, it's been a while.

For all the exhausted caregivers out there who are also still working to put food on the table, how many times a month (or a day) do you wrestle with this multiple-choice test?

Should I give up and place my dear wife in memory care, so I have the energy to continue working? (Sacrifice $$ for memory care cost.)

Should I give up and retire early, so I have the energy to take care of my wife? (Sacrifice $$ from work income and insurance.) I am only 59 years old.

Should I just soldier on and continue working AND taking care of my wife? (Saving $$ for the possibility of more expensive care later.)

Sheesh.

I am 8.5 years into caregiving, my wife is at Stage 6 and has not progressed much at all in the last two years. With my level of experience and logic, one would think that I have this all planned and figured out.

Alas, I do not.

There are so many days I just want to quit. Quit caregiving or quit working. I am known for solving problems, and coming up with creative solutions to daily problems. There are times when I just stand back, look at my life zooming by, and want to just drop out of the rat race.

My general advice to others has been to rise to the occasion and do what you can. Solve problems one by one using technology, services, logic, and the occasional help of family and friends. In my experience, people are willing to help, but the follow-through leaves much to be desired.

As I have said many times before, we are mostly on our own.

I continue to soldier on, working and caregiving. Is eight years too long? How will I know? Will something big need to fail before I throw in the towel?

Much love to all of you,

Bill_2001

Quilting brings calm

I suggest memory care and keep working. If you take early retirement, there’s still no guarantee that you won’t have to eventually put her in MC or a SNH anyway. You’ll be in even less great financial shape at that point due to retiring early. 59 is too young to retire based on the average life span.

Brokenhearted in Illinois

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.

ghphotog

Bill, I would say follow your heart but the heart can be loaded with indecision, guilt and uncertainty. The heart will tell you to soldier on despite the fact that you are burning yourself out. By the time it's all said and done you may be too worn out to get back to life. Once burnout becomes chronic. . . I would seriously consider MC but that decision is also loaded with guilt but at least you might have peace and rest. It's a two edged sword and I know all about it.

sandwichone123

Bill, in addition to the factors you mentioned I also realized that quitting to take on caregiving full-time would leave me at the end with no spouse, no recent work experience, and no current industry contacts. I placed my dh in memory care.

DTSbuddy

You must be an incredibly strong and resourceful person. Give yourself a huge pat on the back for the caring and apparently successful juggling you have been managing. And best of luck to you!

CStrope

I just had to make this same decision. I chose to place DH and keep working. I took a month off with FMLA, and that allowed me the time and energy to focus 100% on DH, and also allowed me to see what life would look like as a full time caretaker without a job. It was not good! I also realized during that time off, that there were many aspects of his progress that I was overlooking because I was just too busy to see it all. I had developed a "system" to get through each day, and that allowed me to be lulled into a false sense of being able to handle it. When I truly took a good look at his needs and what was best for all of us, I realized that I needed to place him.

Vitruvius

I came to the decision to place my DW using a variation of Pascal's Wager. Rather than trying to guess which decision about care and placement had the greatest upside potential, I looked at which had the least downside potential. My situation was different enough from yours however that my choice is pretty meaningless to you. I will caution you that the stress of caregiving can take its toll, it certainly did for me (the guy who developed the deadly skin disease).

There are no "good" choices, no clear consequences. I hope that whatever you decide ends up bringing you and your DW some relief.

AlzWife2023

https://alzconnected.org/discussion/69006/memory-care-early-retirement-or-keep-pushing-on

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:

M1

Bill I wish there were an easy or obvious answer for you. To be honest, your posts in the past have sometimes filled me with dread and anxiety because they have such a desperate tone, and many times I have not responded because I just didn't know what to even begin to say. Your resistance to placement for your DW reminds me of ghphotog, who also struggled with this for such a long time.

She is going to die of this disease. I have worried that you are so burnt out that you could easily succumb, too. In which case you won't need future income. I think I would take the gamble on her life expectancy and place her now for at least a respite stay, see how it feels to you. You could always bring her back home if you change your mind.

Dio

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.

Belle60

I wrestle with the question of retiring earlier than planned every day. DH is Stage 4 and able to be alone at this point but he is bored and lonely. Incapable at this point of planning his own activities through out the day. I feel guilty leaving him everyday to go work when he had to retire early due to this dreadful disease. I feel the stress of trying to take care of him, the house, the finances, and a demanding job. I have recently been able to secure some in home assistance. Although he is able to be on his own for now I learned from this forum to introduce external caregivers early. But it is only 6 hours weekly. My plan is to retire next year when I turn 65 and hope it will be enough for my future financial status. Hope is not a course of action as they say but I dont know how else to approach it. I think we do the best we can and march on smartly.

charley0419

https://alzconnected.org/discussion/comment/206994#Comment_206994

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

White Crane

Hi, Bill, I have followed your posts for a long time and seen how you have evolved into the wonderful and dedicated caregiver that you are to your dear wife. Your love and dedication to her are obvious. It's a sad, sad thing to watch the ones we love slowly leave us due to this terrible disease. We end up loving and caring for them even as we ourselves slowly sink into a tiredness that is beyond words. I can't begin to tell you what to do. What I would hope you would do though is to ask yourself what your dear wife would want you to do. Would she want you to sacrifice your health and your own future? In my case, in the months leading up to placement, DH would have moments of clarity when he would ask me if it was getting hard for me. He said he knew it was hard for me and he didn't want it to be hard for me. He even said, "you may need to put me in a home." Please think long and hard about what is best for her…and what is best for you, too. Your health and well being matter too. Sending prayers and hugs.

Brenda

ButterflyWings

@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.

BPS

I was able to wait until I was 67 to retire and then a year later my wife had a stroke so that finalized my thoughts of MC because I knew she needed more help than I could give. I found that I was not happy being a full time care giver. Giving up work that I liked. I felt guilty for not being able to do more. Then after her stoke and move to MC I felt bad for needing to move her there, but I am coming around to realizing how much better it is for both of us although I miss her being here and it is very expensive. Ther is no advise I can give but MC was right for our situation.

Bill_2001

Wow. You are all so very kind and supportive. Thank you; I do not know what I would do without you and this forum.

Continuing to work and considering placement does make the most sense in regards to my own health and future. I have an appointment next month with my financial advisor to review my situation.

I appreciate the sound, candid advice from you all. Taken all in, it is a sad state of affairs that dementia puts us in this paralyzing predicament. Having to navigate the unfavorable financial landscape our nation offers us, whilst losing our dear spouse slowly to dementia is a fate few people have endured. It is a nightmare, but I have made the choice to take the most positive actions I can each and every day to keep my dear wife happy, healthy, and safe. Making sound financial decisions is a large part of keeping her safe and healthy.

Placement is expensive, and costs more than I earn. There are days that it seems to make sense on paper to give up the job instead of paying someone else (more) to do what I have been doing for so long anyway.

You are all wonderful and I am so grateful for your support. It helps me keep going for another day, week, month…..

Love Bill_2001

Gandy@TN

https://alzconnected.org/discussion/69006/memory-care-early-retirement-or-keep-pushing-on

I have been the primary caregiver for my DH and I am also a teacher. I have been caring for my DH for 12 years. I hired a caregiver and then she had a car wreck and is unable to work for 6 months. Trying to find another caregiver has been extremely hard! I hired one and a few weeks later fired her because she was sleeping and very undependable. I have been using my sick days to be able to stay home to care for him.
He doesn’t qualify to go any where because he can’t walk any more and because I can’t afford, nor do I want him in a nursing home! It has been a very hard road to travel especially with no one helping me.
I do have the help of Hospice now. They provide fantastic nurses and bathers but they don’t provide caregivers.
I am truly exhausted beyond what words can express. I cry every day. I pray every day! Usually more than once! I would stay on my knees praying but I need to care for my DH.
People say you have to take care of yourself. I would love to know the trick in that!
Keep praying!

MN Chickadee

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.

RickM

Oh man Bill, it's such a tough decision. It's so great that so many of us have shared our experiences, but, as they have pointed out, each one of us has to figure out what is going to work for us. There's no good answer. My feeling, after assisting both of my parents, and now my wife, is that no matter what you do you are screwed. So trust your gut and do what you feel is right for you both as a couple. And remember, you will (likely…???) survive. You want to be healthy and still have some assets. My Dad, dealing with his wife with dementia, ended up in a bad state and we eventually had to place him. Assets he could have used to help him care for his wife with dementia came to us, his kids, after he died.

My wife just turned 70, I'm 69. A year ago after a respite "trial" I placed her in memory care. During the respite I was able to get away and really consider my options and deeply consider what I wanted to do going forward. I would definitely recommend a respite for yourself. It was so helpful to get away from the day to day care and get in touch with my feelings. At that point I decided that I wanted to place her. Basically, I decided that I still needed to get away and continue doing the things we had always done but could no longer do together. I wasn't done yet. She was.

She's in memory care walking distance from my house. She's stage 7 now. Bed bound. Not responsive. Doesn't eat much. Losing weight. It's terribly hard to watch and I visit nearly every day. I've thought about bringing her home since she now has hospice, but I struggle with the daily visits. I can't watch her demise 24/7. Our son who visits on the weekends has told me he's starting to struggle visiting and watching her slow decline.

We are fortunate. We lived pretty low on the hog, only had one kid, only owned one house. We didn't experience any financial tragedies. We are able to afford memory care. We both have state pensions and when we retired we set them up with a payout for the survivor. Additionally, we delayed taking her social security until she was 70. She was the major bread winner. When she dies I will get her Social Security payout since it is more than mine that I took at 64. In most cases, the longer you work the more your pension and your social security will be. When your spouse dies you will get the higher of two payouts. Do the math and see what makes most sense financially for you. I'm sure you've done all of these calculations I've just wanted to point it out to others.

I got a good deal going into MC but in the year she's been there they've raised my rate 22%!

With all us baby boomers getting older, living longer, it's going to be quite challenging. As for our kids, who can't even afford houses without our support, I don't even think about it.

Soul Mate

https://alzconnected.org/discussion/69006/memory-care-early-retirement-or-keep-pushing-on

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

stevemcdonald

Bill, Wow, your message resonates. My circumstances are very similar and I am struggling with the same choices.

DW is now checking the box on most Stage 6 items and I've started touring facilities. One piece of advice that I have been contemplating came from a therapist I have worked with. She posed the choice of being a caregiver versus being a husband. Up to this point its been easy to assume "both". Now I am thinking about whether I can meet her needs as caregiver in the schedule and timing required. I work full time and have companion care for some time during the week but my caregiving role is still significant. I love my wife and feel great joy in being able be the caregiver but the contemplation has led me to a reality check on the possibility of continued caregiving versus what being a husband should be. Not sure I will feel any less guilty when the time comes but there has been some clarity on what role I can best support her with.

FTDCaregiver1

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.

CindyBum

I think about this very scenario every dang day. I'm 58, DW is 73. I still have work life in me, am nervous about finances if I retire now, and worry even more about loss of connections for myself when I believe I will still have a life to lead after my DW passes.

I am swamped in guilt every time I leave the house for work, even as I'm thrilled to have the ability to mostly turn my mind away from my despair toward making a positive difference through my work. I know my wife is lonely when I'm at work, even though I've even gotten it down to me working in the office only 3-5 hours a day. The rest I do remotely. And still…huge guilt about her time alone and that I "should" be sitting with her.

I still don't know what I'll do, except realizing that I will be looking for in-home caregivers next week.

Whatever you decide, Bill, I hope you find a place of peace with your decision. Based on what you share here, you will make the best and right choice for you and your love.

xoxo

Gig Harbor

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.