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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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Dill, I just wanted to tell you how sorry I am you are going through this, and don't forget to take care of yourself.

I'm sure this is unbearably hard.

Vent anytime you need to. 🙏😔
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Reply to Anxietynacy
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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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Reply to AlvaDeer
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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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Reply to Geaton777
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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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Reply to Mamacrow
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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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Reply to hastalacorona
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Mamacrow 6 hours ago
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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