Caregiving and Working Overload

Bill_2001 · December 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,

Bill_2001

Denise1847 · December 2023

Hi Bill, I feel your pain in your message. Given that everything has to be done for your DW, I am wondering if an evaluation from hospice would help. My understanding is that you don't need a doctor's order to request it. Sometimes, patients are designated as hospice and they live longer than the usual 6 months. Hospice then re-evaulates. The good part of hospice is that you would get alot more help and Medicare covers it.

Also, think about admitting her for respite care for a couple of weeks. It may clear your head and take the stress off.

Also, considering asking the doctor how long she may have as they sometimes can tell, but won't say unless you ask.

Try to stay working and see if you can get her into an affordable care facility. Whether you are working or not, the full-time caregiving burns you out. I have had all kinds of physical issues, plus depression and just no energy. My DH is at stage 5 and still can do most things for himself. I don't know how you have done this for so long and worked.

Bottom line, Bill, you have to start taking care of yourself. You have done enough. Take your life back before this takes you down - you are having warning signals. God bless you.

Brokenhearted in Illinois · December 2023

I agree. Same position. DH goes from stage 1 to 5 within two years. I was up

at 5:30 am walking the dog making breakfast working 10

hours. A day Trying to keep our lives together . No kids married five years. I finally quite my wonderful job when I arrived home snd the gas was on in the house. Yikes Fair warning. I miss my job and work itself. it was a lifeline so if you can place her in memory care I would absolutely do it and continue to work

as I said to the caregiver specialist Michael needs to be ok but I need to be ok too We have to find a path forward for my life as well

midge333 · December 2023

I agree with getting a hospice evaluation ASAP. It sounds as if she is in a terminal state.

Jeanne C. · December 2023

I haven't been at this long. My husband, who just turned 65, was diagnosed with FTD in January after a second crisis situation. He's progressing fast (MMSE dropped from 15 to 5 since June and he's firmly in stage 6). I tried to work fulltime while using half-day daycare. Between two hospital stays, doctor visits, tests, and days when he just needed all of my attention, I went through FMLA pretty quickly. In July I left a job I liked and was damn good at to become a fulltime caregiver.

I am lucky to live in an advantageous state and was able to work with my CELA to get LTC Medicaid for him. Now he has a home health aide and I'm getting ready to find a new job. If I wasn't able to get help, I couldn't do it. And I feel guilty every day when I get to go out and live. But I have to live. So do you.

I'm starting to look at MCFs now. I want to keep him home, but I also know I need to be prepared.

Bill, you need to put yourself first or this awful <<insert expletive>> disease is going to take two. Talk to your planner. Talk to your lawyer. You need to resolve this because the panic attack is a warning. And you're important too.

Let us know how we can help.

CStrope · December 2023

Bill, I feel like I could have written your exact post, except that I'm working from home full time while taking care of DH. I know my body, and I know it's not liking the stress I'm putting on it. I also know my heart and I know that I will continue down this stressful path for a while yet, even though that is probably not a good path to take. Like you, I love my job, but my sense of obligation to my spouse seems to be the priority. My son (30) gave me a stern talking to the other day about not placing his dad. He looked right at me and said, "I know I won't have a dad for my kids to get to know, and if you don't find a way to place him I won't have a mom either." Even then, I know he's right, but taking that step will be a major struggle.

Vitruvius · December 2023

I won't rehash too much of my sad journey. If you saw my posts from a little over a year ago you may remember that I developed a deadly skin disease. Without treatment 80% of those afflicted die within one year. And even with treatment the possibility is still there. [As an aside, I am in full remission, probably aided by a significant reduction in stress after placement of my DW.]

This condition was clearly brought on by the stress of caregiving. I required months of infusion treatment during which time I was in no condition to care for my DW. Had I not placed her just as I began to have an inkling it was getting too much for me, I don't know what would have transpired.

I'm not saying this will happen to you, my condition is literally less than one in a million. I'm just saying that the affects of stress can sneak up on you. I actually thought I was handling it fairly well. In fact suppressing my needs probably compounded it all.

You need a Plan B that you can implement fairly quickly in case things go pear shaped. I agree that none of the options you have are great, but I always make such decisions based as least as much on what could go wrong as what could go right. Sort of a secular version of Pascal's Wager.

Dunc1129 · December 2023

Bill, I was in your shoes several years ago. I was emotionally bankrupt, spiritually bankrupt and physically bankrupt. I spent every day going through the motions and I was no good to her and to myself. My Doctor said if I kept this up that I would be a perfect candidate for a heart attack or breakdown. I made the decision to place her and slowly started to regain my health and life. Placement is not failure, it is often part of the Alzheimer journey. Bill, take care of yourself

ghphotog · December 2023

Bill, I completely understand. I feel beat up physically and emotionally these days. Years of hysterics, emotions, outbursts. Everyday has it's share of ups and downs and that will wear you out over the years. I have a Dr appointment Thursday and we'll see how I'm holding up physically.

I've had to pretty much retire. I can work from home but my DW will rarely sit quietly while I work. I used to take her to work with me and she would sit in my office and nod off but then she started acting out there.

I also try to do yard work, house cleaning, work on my photography when I can but they only way it seems and I could be wrong, that helps me get through this ordeal is to have a few beers every afternoon. I'm not binging much anymore but still drink more than I should.

As you stated there is not much help from friends or family and we are all alone carrying the burden of our loved onces demise day in and day out, knowing it only gets worse from here.

One good thing I guess from not working is I qualify for respite services from Senior Affairs, who pays for 3 days of daycare a week. That helps but there is always a lot of drama taking her to daycare. I don't have the heart or desire to spend our retirement savings just yet on MC but that choice might be made for me. I guess that's what I'm waiting for, to just not have a choice anymore to place her.

Sometimes just someone telling us to "hang in there" can go a long way.

Hang in there Bill!

H

RickM · December 2023

Bill,

I long ago (after helping parents with dementia) figured out there is no "wrong" choice. There's only the choice that seems less worse than the others. And, only you can determine that.

I agree with others and recommend getting a hospice evaluation and consult with the social worker that is part of the hospice team and explore your options. Looking at things from a financial perspective, do the math. What does it look like when you place your wife in MC and continue to work? How long can you afford to go this route? Will it allow you to put off taking your Social Security until later? Can you start taking your wife's social security to help fund? Consider that your taxes will decrease as MC expenses are mostly deductible. Can you shelter some of your assets?

It's hard to spend more money in a month than I've ever spent to pay for my wife who is now living in MC and to watch our retirement funds decline. However, it was even harder watching my dear wife decline physically and mentally 24/7. She is in late stage now and has hospice care. So my math may work out as our journey may not go on too much longer...but, you never know.

The emotional toll is still heavy. I see her nearly every day. I'm not sure she still knows me. But at least she still gives me a kiss when I leave. And, I still wonder if I made the "wrong" choice.

Take care as best you can. That's all any of us can do.

Rick

Howaboutnow · December 2023

@Bill_2001 I’m sorry you’re living this way. I clearly have no fantastic solutions as I often feel I’m on the verge of my head flying off my body from the pressure of the “constantness” , the unknown, the stress, the lack of living.

We try to make major life-decisions with thoughtful consideration of reality and facts. Yet we are missing a lot of the pieces that are needed to make a decision that gives us peace. I’m caught there too…so my “no-decision stand” is my decision, for now.

Something one-day might tip us over. Prayers for all of us that we can put the pieces of ourselves back together one day.

PS please get Hospice evaluation. If qualified, they would send a CNA to help her get bathed a couple times a week, deliver disease related meds right to your house, RN to visit and chart vitals, bring needed supplies, offer a non-judgmental social worker to hear all your thoughts & concerns,,,,many supports that would increase as needs increased. Even help with MC placement. Thankfully an assessment is done in your home, and all care is brought to you,,,so Dr’s and care appointments no longer become something you need to take hours to get both of you ready for, transport to/from, exhaust yourself and your DW with etc.

PSS last year my goalpost was “i just want to get through 2023”. I can’t do that again. Now I’m on “let’s see what 90 days looks like”. 3 months is a decent chunk of time for Hospice (we are just starting Hospice and 90 days is the first term limit before requalification). The can gets kicked down the road a bit, yes, but a defined goalpost requires you to re-assess the situation and allows yourself to consider options (heck, even that mental task of daydreaming options can bring me back to life).

This is temporary.

Dio · December 2023

If affordable, seeking out MCF may be a solution. Don't let this disease take two lives. You're no good to your wife if something catastrophic happened to you.

BPS · December 2023

I am not in that hard of a position but I can tell there is no good answers about what to do but there is also no wrong answers if we are doing our best. I think we will all question our decisions and wonder if they are right or wrong but we have to take care of ourselves too and that is not being selfish it is doing what is right. Take care of yourself so you are available to make the best choices for your situation.

dhyink · December 2023

Bill,

I am in a similar position. My husband was diagnosed with dementia in 2016 and enrolled in hospice this summer. After careful reflection, I quit my job and found a 100% remote position so that I can be home with him. I hire caregivers for 4 hours a day to help with his care + hospice provides a couple of baths a week. I am a member of an in-person and a couple of on-line support groups. The advice from my fellow caregivers has helped me see that I am not alone and that I need to prioritize my own health. Antidepressants + daily exercise helps. I still feel the stress and depression, but it is more manageable. If you haven't met with a financial planner, it could help. You may have enough money to pay for a little help now and still be able to retire at a reasonable age in the future.

Jgirl57 · December 2023

Bill_2001, it is so hard to constantly wrestle with the thoughts of what to do. I have someone that comes to the house every other week and I would like to increase the hours, but then I worry about spending too much now and not tucking it away for MCF. I do agree with the others about an evaluation for hospice and to get a feel for what could be help for you. If she does not qualify now, at least you know to try again a bit later. This is such a long and tragic disease for all involved.

White Crane · December 2023

Dear Bill, I have been following your posts for a very long time and I hear the misery and uncertainty you are going through. I have been DH's caregiver for about seven years now. At first it wasn't too hard. He still drove for awhile. That stopped in 2017. That's when things got harder. He is now probably in late stage 5. Up until a week ago, he was not incontinent. That has now changed and he is now wearing Depends. His legs are getting weak and he gets confused easily. Two of our four kids think it is time for placement. The other two say it is my decision and they will support me in whatever I decide to do. That's hard as I don't know from one day to the next what I want to do or what would be best for him...and for me. While I haven't had any panic attacks, I am facing surgery next month on my right hand and elbow. Also I have a partial tear in my right rotater cuff that is quite painful even after physical therapy.

Bill, I may be wrong but I think you live in Missouri like I do. A couple of years ago, I called the Area Agency on Aging and they provide me with 26 hours of respite care a month at no cost to me. They also provide a couple of hours a month for personal care for DH. Have you contacted your local Area on Aging? They may be able to offer you some help. Other than that, I am pretty much on my own unless one of the kids are visiting. It's hard and like you I am wondering if it is time for placement. My heart wants to keep him home until the end...and I know that is what he wants too. My head is saying that I don't know how much longer I can or ought to do this. I am praying for guidance. I guess I am hoping that my head and my heart can agree.

Bill, my heart hurts for you...and for all of us on this journey. There are no good answers. Sending hugs and prayers.

Brenda

White Crane · December 2023

witty · December 2023

I'm having a lot of anxiety. Panic attacks pretty much every day and I startle very easily. My body seems to be shutting down - I am in pain all over. Is this what having a breakdown is like?

Denise1847 · December 2023

https://alzconnected.org/discussion/comment/190733#Comment_190733

HI Witty, I am so sorry that you are having these experiences. Please go see your doctor and get some meds. It will help you greatly. Please don't delay. I understand what that feels like. I became very depressed about 6 months ago, had all kinds of pain, heart palpations and chest pain. I don't know about what a breakdown feels like but I sometimes feel I cannot do this another day. Please take care of yourself. Please let us know how you are doing so we can support you.

Dogsaremylife · December 2023

https://alzconnected.org/discussion/67320/caregiving-and-working-overload

First, Bill, I have to point out what a good, exceptional man you are. Your wife is beyond lucky to have a husband who so thoughtfully has cared for her for EIGHT years. As others have pointed out, your wife certainly sounds eligible for Home Hospice Care or outright offsite Hospice Care. With my husband, his neurologist prompted me to utilize it and he wrote the required letter in order to get this service. We have had Hospice here for the last 3 weeks and they are fabulous. A nurse (retired military man) comes here once a week, shoots the **** with my husband as best as possible and checks his vitals. They provide meds and anything else you need. They send a chaplain if you want, they send a social worker who arranges for people to come to your home to sit with and care for your spouse several days a week. You really need to look into Hospice, and yes, Medicare covers it. As to the other huge factor, your loneliness, you deserve to make the best of YOUR remaining years, in whatever way works for you. I have no one else to help me with my husband- no family, no friends- so the loneliness factor can be a monster at times. My solace, my joy, is my 7lb Maltese dog. I don't know how I got so lucky, but this little creature is taking care of ME. He knows when I am in distress and is right there to soothe me and he sleeps spooning me at night. His sweetness, his gentleness are unbelievable and are traits of his breed. However you can find some joy for YOUR life is critical. I bet your wife would want that for you.

witty · December 2023

https://alzconnected.org/discussion/comment/190746#Comment_190746

Thanks Denise

cutchelow · December 2023

> @"White Crane" said:
> Dear Bill, I have been following your posts for a very long time and I hear the misery and uncertainty you are going through. I have been DH's caregiver for about seven years now. At first it wasn't too hard. He still drove for awhile. That stopped in 2017. That's when things got harder. He is now probably in late stage 5. Up until a week ago, he was not incontinent. That has now changed and he is now wearing Depends. His legs are getting weak and he gets confused easily. Two of our four kids think it is time for placement. The other two say it is my decision and they will support me in whatever I decide to do. That's hard as I don't know from one day to the next what I want to do or what would be best for him...and for me. While I haven't had any panic attacks, I am facing surgery next month on my right hand and elbow. Also I have a partial tear in my right rotater cuff that is quite painful even after physical therapy.
> Bill, I may be wrong but I think you live in Missouri like I do. A couple of years ago, I called the Area Agency on Aging and they provide me with 26 hours of respite care a month at no cost to me. They also provide a couple of hours a month for personal care for DH. Have you contacted your local Area on Aging? They may be able to offer you some help. Other than that, I am pretty much on my own unless one of the kids are visiting. It's hard and like you I am wondering if it is time for placement. My heart wants to keep him home until the end...and I know that is what he wants too. My head is saying that I don't know how much longer I can or ought to do this. I am praying for guidance. I guess I am hoping that my head and my heart can agree.
> Bill, my heart hurts for you...and for all of us on this journey. There are no good answers. Sending hugs and prayers.
> Brenda

cutchelow · December 2023

Brenda, I saw your post to Bill and I can relate to what you are saying. I have had hospice for my 85 yr old husband about 2 months ago. It does help to have someone to call. I pray constantly for guidance. My spouse has urinary incontinence and I find the carpet wet most mornings. He wears "depends" and I've tried tape diapers. He pulls everything off and is naked. He won't pee in a urinal and last night he turned over the bedside potty chair. I'm at my wits end with this issue. Any suggestions? I've thought of catheter but he would remove that himself. I think about sending him to an institution but I don't know if I can do that. How do they handle this situation? Thanks for any comments you may have.
Carol

M1 · December 2023

Cutchelow, you may want to look at buckandbuck.com for clothing/pajamas that open in the back so that he cant take them off. There are also multiple threads here about how to layer a bed with multiple mattress pads and sets of sheets to make changes easier, and about the most absorbent incontinence products. Another trick for nighttime incontinence is to restrict most fluid intake to the morning, before noon. Won't prevent it entirely but might help.

White Crane · December 2023

Hi, Carol, I'm glad M1 told you about the clothing company. I couldn't remember the name of it. As to using a urinal, he may not understand what you want him to do. My husband is getting more confused and if I tell him more than one sentence he doesn't know what to do. Keep everything in simple, easy to understand terms. And be sure and thank and praise him when he is able to comply. Is he on any medication for anxiety? If not, you could ask the hospice nurse about it.

I know this is hard. It is the hardest thing most of us will ever do. I don't know how long you have been on this journey but it sounds like you have been doing it awhile. And you sound like a loving and caring caregiver. You are doing the best you can do. Sending virtual hugs.

One more thing, right now DH is in Depends but I have read on this forum that Parentgiving.com has very good incontinence products.

Brenda

terei · December 2023

Bill, IMO you are in crisis. If at all possible, I would find a facility for placement. You are under massive stress + seemed to have normalized a situation that is decidedly not normal. At this point, you sound like you are existing, not living.

Please do something for YOURSELF and also something for your wife(where she would have someone not exhausted attend to her) and find a MC that is acceptable to you.

Remember, if placement does not work out, for any reason, you can bring her back home. It is not a done deal. Sometimes I think people forget that. It’s not like you are putting her out on an ice flow, never to be seen again. (I hope that you can laugh a bit at that) I also think if you have not had a hospice assessment for your LO, you should do that immediately.

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