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Caregiving and Working Overload: Have to make tough decisions
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
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After my TBI, I couldn’t stay from my house. Every 5-days a week. I had to stay for workers that could help me but people - not the workers - was in there, it wasn’t TBI folks;it was people gets worse - yes, m brain lost words. After the next6 months later, Karen found the TBI workers. They helped me with tiny things like selling drink/candy, cleaning bathrooms, moving bushes outside and easy-studs - that was her stuff to… I stayed tha last5-6 years. I taped 5 days a wk the lair on was 3 times a week then 1 time awwwk th
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3 ReactionsBill, you said it well: Dementia IS an unsolvable problem. Maybe that gives us caregivers permission to just try out solutions & tell ourselves there are no mistakes. Or there are mistakes for us everywhere.
I’m a 75 year old massage therapist forced into retirement by Covid & now care for my life partner full time. So now I worry about finding help when I need a break, paying for our lives…new worries every week, it seems. So I vote you do what the back of your brain tells you, & realize there will be problems with any choice you make. Maybe we could all breathe a little easier if we just treated this whole dementia process with less concern for our decisions?
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13 ReactionsWelcome, @silvana6. I'm so glad to hear you have an at home respite worker. It's never enough, but every bit helps. Does your support group meet in person? Do you have support and/or understanding from family and friends?
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2 ReactionsMy husband was taken by ambulance to ER four days ago with a ruptured appendix and a very serious infection. He was unable to use his legs, talk coherently or reason. Today he was much improved and appeared to be pretty much his new normal self. The next step is to place him in a rehabilitation facility. I have tomorrow to find him a suitable place not too far from home. Today I visited one and it was not where I would want him to be. It was dark, noisy, smelled like urine and is in a renovation process.
My husband and I had plans to have Christmas dinner at a friend's house. I am not excited to attend. It will be the first Christmas away from each other.
My husband's daughter is of great support and help; we communicate very often. She loves her Papa very much and is concerned I have a big load. It is her strong opinion Papa should be in a rehabilitation placement and or in long term care. That I have cared for him for so many years and it is time to delegate. I am 76 years old and now my 6'6" 200 pound husband has greater needs and there is only so much I can do.
I meet with my support group twice a month and our coordinator has been very instrumental in this process.
Our neighbors and friends are also offering their help and being supportive.
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5 ReactionsIt’s never an easy decision to make. But it’s great that you have supportive people to help with the decision. Perhaps see if they can help research facilities.
I live in a very rural area. I’ve already decided that when my husband needs to be placed I will have to choose quality of care over convenience. I don’t like that he will be so far away that I may not be able to visit him - and he won’t like it either. But I do want him to have the best care possible.
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5 ReactionsRehab is always short lived and for an acute/specific reason but not respite care. When I cared for my mom with dementia I started out with short stay respite stays at a variety of facilities. A weekend stay, few days, etc. it was a good way to check out facilities and to get respite for me. She eventually went into an assisted living for about a year and her dementia worsened so we had to move her to memory care. Eventually she went into the hospice unit there before she passed. It is a long hard journey for everyone. I wish I had sought respite care sooner than I did.
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7 ReactionsYesterday I found and toured a very nice rehabilitation center that looks like a resort. We are waiting for my husband to be taken there tomorrow. I'll be able to spend Christmas Eve, stay there overnight and Christmas day. As I sit in his hospital room and observe his behavior, I feel more concerned he might not be able to return home. His mental state keeps declining. I am working on accepting it.
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6 ReactionsDear 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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9 ReactionsGood morning, Bill. I was reading what you typed and saw some of what I am going through caring for my brother. Our situation is not as difficult as what you are going through, but I understand the feeling of being alone, trying to figure things out, feeling. I am a single mom that took my brother in in 2021. He was moved to my house from another state. He is mostly non verbal too and we also struggle to find caregivers that are reliable. I eventually gave up the business I had for a long time to be his full time caregiver. I brought my brother to the day center in our town until I found out his waiver wasn't going to help with the cost. After paying off what was owed, I decided we would only use that outlet as a last resort. I am grateful my brother can still do many tasks for himself so working full time isn't an issue. My heart goes out to you. I have found that staying connected with outside places where I feel love helps. I go to church and I also meet up with a few women for a Bible study every other week.
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8 ReactionsEven soldiers have a time limit on tour of duty. There definitely comes a point where soldiering on is no longer possible. It’s different for everyone. You are amazing to have been able to do this for as long as you have.
I retired early at 62 - no medical insurance; left high-paying, high-stress job that I loved; walked away from a retirement plan that wasn’t 100% vested; etc. But before I did that I went on FMLA to try & make an informed decision. I went under care of a MH professional & on medications for anxiety, depression, etc. After 2 months I still could not get a release to return to work. And I knew I couldn’t go back. So instead of having them hold my job for me I quit. 4 months later I was able to start receiving SS benefits as I’d reached minimum age of 62.
Basically, any & all financial planning for the future (near & far) got thrown out the window.
It took almost 3 years to START to recover from the combined burnout of work & caregiving. I had neglected my own health since Medicare hadn’t kicked in. At 65 - after 1st Medicare annual exam - I was diagnosed with breast cancer (caught fairly early). Frankly, it was a nuisance more than anything. I just didn’t need anything else going on! My husband had to be placed a nursing home for a month while I had radiation treatments. It was incredibly stressful.
I am now 5 yrs post-retirement & finally getting my health back. I’ve done extensive research & thru a VA program have a paid caregiver for my husband 7 hrs a day/5 days a week. I am once again able to soldier on.
The lesson I try to share with others is to not wait until physical, mental, and emotional health are so damaged that recovery would take years. I was on a path to die before my husband. The loss of financial security was huge. But that financial security would have been of no use to us if I was dead.
In my case I just had to turn it all over to God & trust that somehow I would get through this. Others who don’t believe in faith-based decisions have to find their own path. But the goal is the same - stay alive, healthy & focused on quality of life for both you & your loved one.
I hope you find the freedom to make a decision that starts you on your journey back to good health. It’s possible; just takes time.
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