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I have been taking care of my 92-year-old husband solo for 9 months although it seems like much longer. I am 74 and came off 3 years of treatment for ovarian cancer and lymphoma in April. He cannot use his legs, so is wheelchair bound and depends on me to get on and off the toilet, for help getting washed and dressed, and many times asks me to wheel him from one room to another. His mind is mostly OK although I suspect there is some decline. He also has stage 4 congestive heart failure. I am so tired of this. We have talked to hospice, and he qualifies for their help. I don't know that I am asking a question here, more like blowing off steam, but I feel exhausted, resentful, and put upon. I can't remember the last time I felt happy. I guess I just wanted to sound off.

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I’m in the same boat as you and have been doing it for 7 years.

He has Hospice now but they only come two ore times a week to bathe him and a nurse once a week to check on him. I have bit the bullet and have hired someone to come in for two hrs a day.

Hospice has been mostly a support system which I appreciate having someone in our corner. If you have a problem they will try and help but if you need more than that, you need to hire someone to come in.

i fight depression everyday but the support hospice gives has made it tolerable.

Good luck.
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Reply to Annanell
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I hope you get some help soon! That does sound terrible for you and it is quite alright to vent sometimes. In proper society people do not want to hear these things but it is ok here. Hang in there.

As I write this I just watched my father lock me out of the house. Not on purpose He has dementia and doesn't do a thing for himself but loves to turn off lights and lock doors. It's ok, though, because I was smart enough to bring my keys with me so I can just walk around the house and come in the front door...
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Mamacrow Sep 19, 2024
My Dad lock me out on purpose - stands on the other side of the sliding glass door and acts like he doesn't know how to unlock it! uuggghhh I carry keys as well. The struggle is real!
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I'm glad you recognize that you are in burnout (and not at all happy that you are in it!)

The caregiving arrangement must accommodate the caregiver, just for this reason: to prevent burnout. If you degrade mentally, emotionally and physically then who will be the caregiver? You are the priority. Anything you choose to do that helps you is acceptable -- whether your husband wants it or not.

First, does he have a PoA? If so, is it you? Or someone else? The PoA must read the document to find out what activates the authority. It is usually 1 medical diagnosis of cognitive/memory impairment that necessitates the help of the PoA. Get this diagnosis on clinic letterhead and signed by your husband's primary physician. The PoA will need this to manage his affairs, especially financial ones. My Mom's annuity manage company made me jump through all sorts of hoops in order to be able to access her funds. You (or the PoA) do not want to do this in a crisis.

If your husband doesn't have a PoA then he sounds like he is still able to make this happen. Legally the bar is low for "capacity" to do this so don't make any assumptions. The elder law attorney will interview him for capacity and decide.

Why am I harping on the PoA issue? Because it is where a lot of care decisions, actions and possible solutions get stalled. Especially if your husband becomes resistant to a solution that is in both of your best interests. An activated PoA can make it happen.

Maybe start by hiring a companion aid for him a few hours a day, every day. If he balks, you tell him the aids are for you. Hire out services that you are currently doing, like housecleaning, yard work, etc. If your husband is in decline he is losing his ability to use logic and reason, and his empathy also will disappear -- as these are all parts of dementia. He will start to not see or care that you are burning out due to his needs. Therefore you are your own best advocate.

If money is tight, consider contacting your local Area Agency on Aging for information and help. Or, contact social services for your county to see if your husband qualifies for any in-home assistance, like light housekeeping, food prep, hygiene, transportation, etc.

If your husband doesn't have a PoA and refuses to create one, inform him that your hands will be tied and the county will eventually have a court-assigned legal guardian take over all his care and decisions, including what facility he goes into and when.

There is always an alternate solution. You just have to be willing to accept it.

I wish you success in reducing your load and peace in your heart on this journey.
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Dillsburglady Sep 22, 2024
Thanks for your help. Yes he has a POA and put it in a "safe place" along with my POA, Advanced Directive and Will. Now he can't find any of them. Luckily we have a joint checking account that I use to pay bills.
I am concerned that if my cancer reoccurs I won't be able to do chemo and also care for him. He has a son who is in Florida. He moved there when all of this started. Can't depend on him for much,
Husband has talked about stopping eating and drinking but wants to wait and see who wins the election first. Is this crazy or what?
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I feel for you. Although I am fairly healthy, am quite done with this myself. Bern at it over a year. Mom lives in her own home, I do food, bills, laundry, cleaning. Make her toilet and dress herself (she is more than capable). However she refuses to eat or drink properly, or even exercise her weak leg 5 minutes a day. At this point I really don’t care for the person she has become
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Dianne4016 Sep 24, 2024
My mother lives in a rental house. I do her bills, grocery ordering, medications, yard work, cleaning, and dr appointments. She rarely gets dressed unless she is going to a doctor’s appointment. She is bossy, complains constantly, and is generally disrespectful to me and my DH. I’ve been doing this almost 6 years. She also refuses to eat anything but bread and sweets unless I bring her hot food from my house or a restaurant. It’s exhausting emotionally!
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Sad state of affairs for us caretakers. My husband needs 24/7 care and it's me! I signed him up for hospice and an aide showers him 2x/week. I also bring him to daycare 3x/week. I have a sitter who's willing to stay a few days while I visit family and/or just get away. I've tried respite and toured group homes,,all were horrible. I don't have $5000/month for group homes or $9000/month for snf and I refuse to pull from our paid in full home. To make it worse. The facilities give horrendous care and as a retired nurse I know what I'm saying. It's a crime how most are abused by neglect. So far this plan works for me but I'm still looking forward to me time someday🙏
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westernKentucky Sep 24, 2024
You must live in a southern state. Seriously, they are the worst about elder care. I am in Kentucky, and the rural areas are horrible about having nice homes for our elderly.
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It sounds as though sounding off is leading perhaps to some difficult decisions, and I agree that they are very difficult. I would call all family and friends around you for support now. I would see an attorney about division of assets in order to keep funds safe for yourself and your future. And I would begin to think about the sustainability of all this. It may not be sustainable for any number of reasons.
I sure and sorry and I sure do wish you the very best ongoing.
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I certainly understand the unhappiness of caregiving. Please, do not lift a grown man. I learned the hard way and have surgery looming to repair injuries from lifting. I flat refuse now. You deserve better. Perhaps it’s time to explore placement.
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I'm 68yrs and taking care of my 96yr old dad who has Lewy Body Dementia - so trust me - I know how you feel. My Sons took turns away from our family business last year to care for Dad for 8 months because my husband became ill after we had C19 and after 8 months and complete three organs failing my Hubby passed in March of 23 - I immediately had to return to care for Dad and have been here 24/7 since. I guess I just vented as well - so thank you for venting - I needed that too. You definitely need help - you're still in the healing process and this is way too much for you at this point - My Best Wishes to You! Take care - Remember to breathe! Oh & I'm back to crocheting to relax when I have a moment to myself (when he's sleeping during the day) He's up off & on at night - so am I :\ Take care.
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Dillsburglady Sep 22, 2024
I've been knitting hats for chemo patients in my "spare" time. It is relaxing and I get to be creative. They are much appreciated. I'm up to about 50 so far and am beginning my net batch of winter hats. Keeps me sane (at least I think I'm still sane).
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Sign up for Hospice! I was at the point you are at now - they are a huge help and really make my life better…depending of the hospice company you are with they may have people that can just sit with him for you to get a break. Like you I don’t have any backup help to speak of so it is a 24/7 job. Good luck!
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Dillsburglady Sep 27, 2024
Just did that yesterday. Ordered pain meds, and said a nurse will come once a week. They offer NO support services for the caregiver that I can see. Will send someone twice a week to bathe him, but he doesn't want that. I asked about support groups for me and I got just a blank stare - they don't do that. What huge help are you talking about?
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Since 2019 my husband has been having one health crisis after another, beginning at 62 years old. We're 6 months apart he and I. Who says you have to be very old to get very sick? In the midst of all this, we had my very old mother w dementia living in Memory Care Assisted Living to contend with, and her very mean streak a mile wide which caused me a lot of stress heaped on the pile. Mom died 1 month before we had to go to AZ so dh could have a liver transplant, non alcohol related.

Just when things were starting to calm down, I was diagnosed with stage 4 cancer, out of the blue, from a pain I was seen for in the ER. Then I started immunotherapy and had a very, very bad reaction to it. It put my cancer into remission but left me with a big disability causing dh to be MY caregiver now for the past 19+ months.

To say we're tired and have medical fatigue is a gross understatement. I feel your pain, my friend. I hope the cancer never comes back, but if it does, you'll have chemo and get dh into a SNF with hospice. Period. I hope you will consider your life as important as his, and recognize when YOU need medical attention and step back from your caregiver role. Just as I expect my dh to step back from his caregiver role if he needs medical attention. I hope you get dh on hospice now. Take the extra layer of support. If my cancer comes back and can't be treated with surgery, I'll call hospice for myself since I cannot take immunotherapy again.

We have to put those "what if's" out of our minds and do what we can to enjoy the moments in life, appreciate the beauty of the small things. Take it day by day because that's all ANY of us has anyway, in reality. I wish you good health and your husband no pain and suffering during the rest of his journey. God bless you both as you love one another through these moments.
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FixItPhyl Sep 25, 2024
Your sharing this has truly given me the courage to start considering my life as important ... and step back from the pace of caregiver role I've been on for so long (stop trying to FixIT because IT never seems to end). Oh, and by the way...my mother has that same mean streak, w/o dementia!

God bless you as well.
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