Caregiving and Working Overload: Have to make tough decisions

Posted by bill2001 @bill2001, Dec 4, 2023

Does a caregiver throw in the towel before they suffer total collapse, or after?

I am eight years into caregiving for my wife, now with late-stage vascular dementia. The last four years, she has attended adult day care while I work full time. She attends three days per week, and I keep her home and work remotely the other two days.

They say that dementia and Alzheimer’s takes two lives: The patient and their primary caregiver. I have given it my all to not only prove that to be false, but to continue to work full time in order to support us and maintain a sense of purpose and normalcy. The daily grind of taking care of my wife, now fully unable to communicate, needing complete assistance with eating and dressing, and doubly incontinent, is unbelievably tiresome and lonely. Add a moderately stressful job to the mix and we have a recipe for an implosion.

I also have no one to help me. Paid daycare is the only help I ever get, and no one helps us at home, ever.

I suffered a panic attack while at work a few months back; the first time that has ever occurred. Work had always been the one place of respite and escape, even under moderate stress levels. I arrive at work already stressed from preparing my wife for daycare in the morning, and I always had some relief upon arriving at work. This year has been especially challenging, and I simply shut down.

I found myself in full panic mode. Is this the beginning of the unraveling – the price caregivers pay – another great loss to add to the list of things that dementia destroys? Caregivers ask for grace and latitude; the hard truth is that most people have no idea how difficult this load is to carry, and their tolerance and grace wear thin long before the dementia caregiving journey ends.

The course I have chosen to mitigate any further damage is to begin planning for an even earlier retirement. Caregiving and working full time may not be sustainable for the long term, so I must plan an escape. I am not retiring today; simply starting the discussion with my financial planner has given me some measure of hope.

Dementia is a big, unsolvable problem. As you all know here, there is no cure, no timeline, no medical help, no financial help, and no relief. It is day after day of hard work, heartbreak, loneliness, and misery. Retirement planning is somewhat within my control, so I have chosen to focus on that. I also focus on other things I can control: Home improvement projects, meal choices, and organizing. After all these years of caregiving, I still find projects to do around the house and yard. This helps pass the time and keeps me occupied.

I am reaching out to other caregivers here who are facing this challenge, or have faced it and made a hard decision. Does one just soldier on and hope they do not collapse? Is it better to just retire and remove work stress? Did you place your loved one into memory care and continue working? I can see where all three of these choices are not ideal for various reasons.

I have never faced a more difficult choice in my life, and I fear that I may make the wrong choice. If I soldier on, I may shut down again, or worse. If I retire, my wife may pass away soon after, and I will wish I still had my job to occupy me. If I place her in a home, she may live a very long time, so I would never be able to retire due to the cost of care. It seems that with every choice, I am taking a potential life-destroying risk. I am not against taking a chance now and then, but this is too big to gamble with.

So I soldier on, kicking the can further down the road.

Thanks everyone for reading.
Love,
Bill2001

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Hi Bill- Although I was at home with my husband because we were both retired. Being a caretaker takes a huge chunk out of you. My husband's doctor was extremely sensitive to my needs as well and kept pushing me to get help. But we couldn't find anyone to take a night shift.

My husband also had vascular dementia. And I had a broken back from continuously holding his weight up when he needed it. I had been treated for lung cancer and needed heavy doses of prednisone as a result. That did the trick of making my bones very weak and my middle back broke in two places. My husband had started getting paranoid, but I didn't think that he would change as quickly as he did. But they changed overnight!

I thought I was the only one who could care for David. I knew what he liked and how to talk to him. But most of all, I loved being with him. We still laughed and cried together. We had fun, even laughing about his mistakes at times. But the night that I was forced into seeing that I could no longer care for him without jeopardizing my safety was the last night he spent at home. He had become a paranoid schizophrenic and was a danger to himself and others.

And still, I soldered on. I was going to spend 24 hours with him in his hospice room. There was a pull-out chair, and that's what I slept on. Both my stepson and my son both flew in from their prospective states. But I shooed them to go to sleep somewhere more comfortable. After three nights of this, I collapsed into my stepson's arms and said that I couldn't do it anymore. Both he and my son spent alternating nights with David. Then I shooed them out, and he died that night. That was just eight months ago.

I kept soldering on until I couldn't anymore. The emotional toll, as well as the physical, just doesn't let up. What tired me out the most was the grieving as I watched David.

Is there a way to make a deal with your boss that if your "leave of absence" lasts beyond a certain amount of time, then you will retire? This way, you'd have the option if you wanted to return.

Merry

REPLY
@buddha

Dear Bill
You are an amazing man and an inspiration to so many facing these challenges. I am 82 yrs old and have been caregiver for my wife with advanced alzheimers with all of the classical symptoms. I have been fortunate economically and have 2 caregivers 6 days per week.One from 8am to 2pm and one from 2 pm to 8am who lives with us.I am exhausted from the emotional losses and heartbroken. There are many practical ways for you to go ...none of them great options.
To me your work is a gift as I cannot imagine you being home 24/7 with the sadness...that is no life.
I also felt and still worry that the grief and responsibilities will destroy me.The social isolation is also very painful.I have been working spiritually to practically learn acceptance and surrender as a means of survival.If u would like to discuss this offline let me know. Jack

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Hi @buddha- Yesterday I made a call because I am tired of just talking to a few friends and my family. But mostly, it's my 13-year-old cat and me! I just turned 77 and my husband was just 80 when he died in April. We had been married for 45 years.

We had both been retired, so there wasn't any job to turn to, and I was in pretty bad shape after he died. I was exhausted, still had a broken back, and was deeper than depressed. But as time went on, I felt better. I feel hopeful, I'm not sad and depressed all day long, and there are still things that I want to do. I'm not at my best yet, but hopefully, I'm not at my worst either.

The call that I made was to take a course at the University where I graduated in 1970. I didn't want a Zoom class; I wanted to go somewhere and see others. It's a writing class and I love to write. I'm not yet up to the standard that I was, but I might be someday in the future.

I never thought that I'd survive losing my husband. But I have. I was strong for him when he needed me. I'm learning that I can be strong for myself. You can be too!

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Hi Bill,
Because of the stress involved in being a caregiver, and the fact that you now have a choice that could help you, I would seriously think about retiring. You project a little when you say that your wife could die soon after moving into a nursing home, but you could be right. If that happens, maybe you could go back to your job or find another job. The situation you are in is very stressful and you need to make a change to take care of yourself. Have you contacted Senior Services in your area? Could you afford to have a caregiver a few days weekly to give you free time? Have you contacted your hospital to see if they have trainees who might be available to help and need the experience? Or perhaps an advertisement in the newspaper, making sure you have their background checked before hiring?
I am sorry I don’t have a definitive answer for you but hopefully you will gain some insight as to what decision you might make.
Most of all, whatever decision you make, don’t let guilt get in the way. There are so many of us in your situation who understand and condone whatever decision you choose.
God’s blessings to you!

REPLY

I wrote you a few days ago. I want to be more specific:
I qualified for Senior Services by sending them information about my financial status. Then they wanted to send a caregiver 3 days a week (free) but my husband isn’t ready for this help yet. They also help you file for Medicaid and prepare your taxes - again free.
So I would highly recommend you getting in touch with Senior Services in the county you live in.

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Hi Bill,
It’s a month since you first posted, hoping you are having some more clarity as to what to do. I was the in-home caregiver to my husband, diagnosed with vascular dementia, and now am the twice weekly visitor, advocate, and expeditor for my husband in assistive living.
I would urge you not to quit your job and to make an appointment with an elder law attorney to get the facts as to how your state handles future Medicaid applications, you may be surprised. If my husband lives past the 5 year time limit on his LTC insurance, I will need to apply for him and do the “spend-down” as required, but I will not have to move from my house and will receive a portion of his pension and social security, as determined by the our state, related to avoidance of “spousal impoverishment”.
There may not be much of an inheritance for our or your children, but I was raised by Depression-era parents (and raised mine) to “get your education, get a job, work hard, and save”. Everyone paddles their own canoe, it’s wonderful to be able to receive financial help from parents, but you have to be prepared and work at paddling that canoe.
Don’t be afraid or feel guilty about placement, don’t feel like a martyr- that you are the only one who can provide good care. You will meet plenty of nice, competent, and friendly staff, who will provide do exactly that. My husband is the healthiest he’s ever been in the eight years I cared for him and now the one year in AL.
Best of luck, please put on your oxygen mask (especially a point now with the Alaska Air event😊).

REPLY
@merpreb

Hi @buddha- Yesterday I made a call because I am tired of just talking to a few friends and my family. But mostly, it's my 13-year-old cat and me! I just turned 77 and my husband was just 80 when he died in April. We had been married for 45 years.

We had both been retired, so there wasn't any job to turn to, and I was in pretty bad shape after he died. I was exhausted, still had a broken back, and was deeper than depressed. But as time went on, I felt better. I feel hopeful, I'm not sad and depressed all day long, and there are still things that I want to do. I'm not at my best yet, but hopefully, I'm not at my worst either.

The call that I made was to take a course at the University where I graduated in 1970. I didn't want a Zoom class; I wanted to go somewhere and see others. It's a writing class and I love to write. I'm not yet up to the standard that I was, but I might be someday in the future.

I never thought that I'd survive losing my husband. But I have. I was strong for him when he needed me. I'm learning that I can be strong for myself. You can be too!

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Dear Merry
You were a gift from God to your husband!
Now is the time to be a gift to yourself.
There is a difference between loneliness and solitude.
Enjoy your time as special and then have fun beginning to write.
See the good in what you write and don't be personally critical as you regain your abilities and your passion.
The pain and grief you endured have helped you to grow.
Who you are and what you will now write will surprise you.
This life is precious now is your time .
Buddha

REPLY
@buddha

Dear Merry
You were a gift from God to your husband!
Now is the time to be a gift to yourself.
There is a difference between loneliness and solitude.
Enjoy your time as special and then have fun beginning to write.
See the good in what you write and don't be personally critical as you regain your abilities and your passion.
The pain and grief you endured have helped you to grow.
Who you are and what you will now write will surprise you.
This life is precious now is your time .
Buddha

Jump to this post

Why, thank you, Buddha. The class starts next month, and hopefully I'll be a bit more settled then and ready to take up my pen, or the keys on my computer.

Merry

REPLY
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