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My husband 12 yrs older than myself, he is 70, suffered a stroke after a shunt adjustment. Communication is limited. I have chronic back pain and osteopenia in hips. His problems started in 2007 with cancer. It's as if he died and everyone moved on with their lives. Help in the beginning and now? He has 3 boys from previous marriage, and 3 sisters that are too busy living their lives. We always got along and now I feel as though their only care for me is that I take care of him. I have told them I need a break,...dead silence. My health deteriorated from caregiving. I cannot put him in nursing home as he is cognitive and yes I love him. Often wonder what would happen if I died first. Would love to hire someone to move in and help, but we have no one. I am in pain physically and emotionally. I am on pain and anti depression meds. Truly Burnt Out.

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Savannah, I understand that you have made the choice not to place him permanently in a nursing home, but would you consider a short term respite stay of a week or two? Would he be able to attend adult day care a few times a week? Can you afford any paid help in the home? Even something like having a cleaning or yard maintenance service would take some of the burden off of you.

When you tell them you need a break are you offering them a specific task they can do? For instance, asking someone to come and stay for a couple of hours on Saturday so you can run errands or mentioning you need a driver to take him to his doctor appointment may get a better response.
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If you're in it alone, then you've got to hire some help so you can get away a few times a week for entertainment...lunch with girlfriends, take in a show, library, whatever. Maybe even the local senior center for a card game...or a day trip.

In my area here, it costs $25 an hour for a very nice woman to come, serve or cook lunch, a little light housekeeping...keeping hubby company and all around relieving YOUR mind that he isn't alone. When mom lived with me, I spent her Social Security check for that kind of respite.

My dad lived for nine years after a catastrophic stroke. Left him struggling to talk and made it VERY difficult for him to walk. But he did. And he went to the local senior center twice a week to play pinochle. His wife worked full time. She was able to leave him all day, actually. He would even start dinner. He had a Lifr Alert or some such that knew if he fell, AND had a button he could push in case of emergency.

I wonder if you are taking advantage of some of these things to get some alone time.
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I hired a service and they kept changing up the aides. My husband was an introvert before his illnesses so now he doesn't want to mingle. I hire all yard and home repair work. I do leave him alone short periods, as I have to go do all errands. I came home one day to find him eating burnt eggs, he had cooked on smooth surface range, no pan. He cannot operate microwave, coffee maker, and it's trial and error with TV remote and telephone. He has had many falls over the yrs. last Saturday being the latest. Neuro visits are approximately 100 miles away and one son has taken 3 trips but that was at the beginning. I have been DD for 8years and it aggravates my condition. He thinks he could stay by hisself for a few days and although I believe he is incapable, the egg incident among other things, I am considering going a.w.o.l.
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You are considering walking out AWOL for a few days but you won't consider changing your living arrangements?
I think you need to take a deep breath and seriously consider your options. Make a list of options, the pros and cons of day care, aides in the home, assistive living, whatever else you can think of. If you can get his family on board so much the better, but in the end this choice is up to you to make. I think it is obvious he is cognitively impaired to a degree that he can not be trusted to stay on his own for even short periods and needs constant supervision. If the conditions that caused his stroke are stabilized he could have a many years of life left, where do you see yourself in 2025?
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It's sad when a caregiver has to go to the hospital or the grave to get a break. It would have been nice if someone had stayed another day or so you could get back on your feet well. Are your ulcers bleeding? Has your doctors prescribed antibiotics for them? Some doctors still don't do this.
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Savannah, yes, you are truly burnt out because you are attempting to do the work of three shifts of caregivers. I would not rely on family, no matter how loving and nearby, to be the main source of respite. You are going to need to pay for these services on a regular basis if at home caregiving is going to be your plan.

At some point down the road, you should take a look at some assisted living facilities. You might be pleasantly surprised. Just because your husband is cognizant of the world around him doesn't mean that he wouldn't benefit from the care and variety of people and activities at a facility .
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cwillie, I know what I purposed doing didn't make much sense. I cannot walk out as my problem is I evidently love him more than I do my health. I've heard take care of yourself, so you can take care of him. I have wrecked my health to keep him going. I can't find any help to hire other than housekeeping. I don't know what 2025 will hold for me, I never gave thought to that far before. I take it day by day.
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Savannah, I know what you are talking about when it comes to arranging respite. How do you think your husband would feel about going into a facility for a week or two so you could take some time off? Many nursing facilities offer limited respite care. It is pricey, but if you can afford it and your husband would be okay with it, it is an option.

What I really wish is that one (or more) of the family members could stay with him while you get away for a while. Since your husband isn't a social person, it would probably be the option he was most open to.

I would definitely set up a plan so that you can get away from the house often without worrying about him. It will help keep you refreshed and you won't feel so rushed when you're doing the shopping. We all need to stay refreshed to keep ourselves from falling into despair.
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JessieBelle, thanks for the response. I can't afford NH for respite if Medicare doesn't pay. Last week I was taken to Hospital ER with stomach ailments, via a friend, who also called my husbands sister to come stay til I got home. One of his sons stayed both nights. She said she cannot change him etc...I was there 2 nights. Believe me... No Repite there. His family was only concerned as to when I was coming home, and when I was brought home he left and not once asked how I am or why I was even at Hospital. I have tried to remain calm as this is Ulcers I'm dealing with but its hard. As long as I am here putting one foot in front of the other... I suppose??
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JessieBelle, My doctor put me on medicine for ulcers but not an antibiotic. I have one living sibling and he is a caregiver for our parents, they live next door to him. Thank heaven he helped me last week. Some people should learn how to care, let alone be caregivers. I hope those that have not been there for me never have need from me... I strive to be a good Christian but they make it hard. Oh well, I think it helps me to be able to relate to people who are or have been in my shoes.
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