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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.
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...
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.
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?
I sure and sorry and I sure do wish you the very best ongoing.
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.
God bless you as well.