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aged 54 his mobility no w is virtually wheelchair bound. he doesn't try to help himself at all now,just relies on me and the carers who have started helping me the last 8months,he will not let them help him with toilet needs but waits for them to go then I have to take him to toilet or clear up any accidents he may have had,may I add I also had a stroke 3years after him caused through stress,mine was also quite severe but with perseverance I got out of a wheelchair,although my mobility is no where near back to normal,I am not a saint and don't want to be seen as one,but I am getting fed up with being his full time carer,when he makes no effort to try and help himself,I'm ashamed to say some days I feel like just leaving to enjoy the rest of my life but I love my children and would not want to burden them,they all work hard and they too are getting fed up with his attitude ,sometimes I wish I could just put himin a care home but I believe they have to agree to this,I'm sure he wouldn't,life's not fair

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It is not fair that you have had to be his full time caregiver and particularly with the added stress of having had a stroke. Has his doctor evaluated him for depression? Has his doctor said anything to him about needing to move to assisted living or a nursing home?
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Sadsusan83, sounds like your hubby is mad at himself that he had a stroke at 44 years old [if I read that correctly]... you'd think at that young age he would do everything in his power to get better. Usually with a lot of physical therapy one can be more mobile and productive. Was he putting off physical therapy?

How on the world did you care for your hubby after you had your own stroke, or did you have a paid Caregiver for the both of you?

Maybe it is time for some tough love... tell hubby you can no longer safely handle him when it comes to the bathroom.... ask him what would he suggest?... if he balks and says he wants you to help, be tough and say *no, I don't do that any more*.

And keep this in mind, 1 out of every 3 Caregiver passes away leaving behind their love one that they were caring.... then what would he do?.... he would either hire more help or go into a nursing home where he would probably live for many, many more years... but your children would be without a Mom... how fair is that?
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I too feel compassion for you but he will continue his present behaviour as long as you continue to enable him. Try arranging for helpers for say 24 hours for a start and leave the house. Maybe spend the day with one of your kids. tell him before you go that if he does not allow the caregivers to take care of his personal needs while you are gone you will be having him transported to the ER when you return because you can no longer do it.If he refuses the ambulance which he can. leave him in the mess and call adult protective services. This is not going to be easy but let everyone know you are leaving. This is no life for either of you. Your kids will understand they must already know how difficult it is. Start by talking to his Dr. If the kids have not been given POA by him they have no say in your actions. This is not going to be easy but the choice is you ar him and without you he is helpless.
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All great feedback and advice. I agree; you should get away for a long weekend and arrange for 24 hr care. If he refuses, it is on him. If he dismisses caregivers early (and he might and legally can); then if there is a mess upon your return; do as stated above and call ER.

Secondly, I would have daily caregivers check him (for bowel or bladder mishaps) BEFORE they leave for the day. This should be part of their caregiving responsibilities -- if it hasn't been before; sit down with them and discuss and enlist their help. Maybe get dr to order occupational therapy or physical therapy to help him manage his bowel/bladder habit -- at least better than it is now. Talk to dr and see if dr (yours or his) will have a frank discussion with hubby and tell him that "more skilled care is warranted at this time" and it is time for hubby to enter care because his caregiving needs are now taking a larger toll on your health. End of story.

I hope you get the help and strength to do what is needed for you. It is very hard with the spouse; but tough love is needed. IF the situation were reversed, I'm sure you wouldn't want this burden on your husband and you would readily enter care. Unfortunately, this is all too common and the spouse no longer is a "loving partner, wife, husband"; they are just caregivers and it is sad to grieve that intimacy loss.

Best of luck.
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Do you know all the ways he has been affected by the stroke? Sometimes it can alter the person's ability to think clearly and reason. He may not be able to process that you are not able to care for him the way he wants. My cousin, after many strokes, thought that I could stay in her house and do everything for her while running my own business in a different town. She was not able to understand how ridiculous her expectations were. So, I had to take action and place her where she could be cared for.

If you feel it's best for your husband to stay in the home, perhaps taking a one week respite would allow home care providers to come in and get him into a routine with them attending to his personal needs. Then when you return, he'll be used to it. I wish you the best. This can be so stressful. It won't get better unless you make it happen. I've learned that.
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