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I came across this site today and I read some comments about persons caring for their love ones. It reminds me I am not alone in this situation. My husband is 63 years of age and he had a stroke 2 and a half years ago. I am his full time caregiver in the mornings plus I have a full time job. He has right sided paralysis and uses a hemi-walker. Can't speak, he communicates by nodding and gestures. He can say about four words thank you, yes, no and hello but not clearly. He was a very active person and now he has given up. He said he wants to die. He had lost so much weight and for weeks now he is refusing to eat lunch and dinner. His breakfast he eats now about 50% of what he used to eat. He isn't drinking much fluids, probably one 8oz bottle of water a day plus he drinks about 16 ozs of orange juice a day. His ribs are showing and he looks emaciated. I have cried buckets of tears seeing how my husband has come to this. He is on antidepressant and likes it's not helping him, he is very depressed. He don't want to go anywhere, not even to his doctor appointments. He refuses to see his family and does not take their calls which has caused them to blame me for that. I told them he had a massive stroke and ever since, they have been nasty to me. They sent the police and APS to our home. They found nothing wrong at our home. I have been caring for him and sometimes I feel it's not enough. Recently his brother threathened to come kick down our door and beat me up. My husband is scared because this brother killed their own brother years ago. Now I am scared. It's been really stressful for me. I am just making sure he is comfortable and preparing for that time.

Thanks for any advice.

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Does he have difficulty eating or is it that he is depressed? Given that he can get around with the hemi walker and stay alone while you work it sounds like this is more of a mental problem than his body failing from the stroke. I urge you to speak to his physician about his depression, he may benefit from some time on a psych ward to help him overcome it, if he is emaciated you may be able to admit him involuntarily as he has become a danger to himself.
After treatment he may benefit from finding his own support group of stroke survivors, even with his level of disability people do manage to have a fulfilled life.
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Does your husband want Hospice? Let them come and interview him to get a feeling for what his intentions are.
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Hello everyone, I greatly appreciate your advices. I should have mentioned I am 39 years of age. I am very petite and have lost alot of weight since caring for him. I placed him in a nursing home last July for 2 weeks so I can take some time for myself. I travelled abroad to see my family. My parents especially my mom was shocked to see me. I have always been small but to them its like I am anorexic. I relaxed and ate well. I gained a few pounds and since I returned, I have lost some weight again. Sometimes I feel like packing my bags and go back home with my family but in my heart I can't do it. He was a good husband. I feel like I am losing myself in this situation.
With regards to my husband, I believed he is refusing to eat on purpose. His doctor changed his anti-depressant a few months back. I reached out to him and let him know we need to try something else. He recommended Intensive Outpatient Therapy and when I told my husband about it, he refused. He was going to therapy and stopped. Therapists came home and he worked with them for awhile then refuses. He refuses to take showers so I resorted to sponge bathing him. Even that, he refuses to do most times. I was in nursing school but not working in the profession, so the skills I learned has really helped me in caring for him.One week he refused to get out of bed, so I asked for a therapist to come home and help me. He did eventually get out of bed and walked. The therapist and I felt him resisting when we tried to get him out of bed, so he knows what he is doing. I have tried to get him out to see his psychiatrist but he refuses, its like that word is the worst word he has ever heard. I have cancelled several appointments because he doesn't want to go out. About 6 weeks ago he was admitted to the hospital 3 times in two weeks. The first time was because he had a seizure. They ran several tests and found nothing except the old stroke. His vitals are good and thats why they wont keep in the hospital. Both of his carotid arteries are blocked and they found he has 3 aneurysms in his abdomen. I told him if he doesn't eat, he will have a tube put in, he don't want that so I told him he must eat. I used to give him an ensure but he refused it for the last 4 months. He is constantly constipated and will be miserable for days. I told him drink more fluids and he refuses laxatives to help him along the way. Sometimes I have to cry and threathen him that I am leaving so as to get him to do what I want. All he does is sleep all day and watch TV. I joined a support group for stroke survivors and caregivers thirty months ago and he has not make one visit. When he came home after spending 3 months in the hospital and nursing home going through rehab, he indicated to me wants to die. So I took him to see the doctor and when the doctor asked him if he wants to hurt himself and die, he said no and he was looking at me with a menacing look. He was mad that I took him there. It's like I am trying to help him but he is lying to us. The doctor is going to go off of the interactions he have with the patient and he found that he is not harmful to himself. It's been a roller coaster ride for me. I did mentioned to his doctor about hospice and he did agree it might help him. I still feel like a case worker should have make a home visit to assess him and make the recommendations on the way forward. As of right now, we are at home taking it day by day.
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Mandy how old is hubby? he sounds much older than you. He may or may not be
trying to die or is actually in the process of his body shutting down. He will probably refuse a feeding tube and he has the right to do that.
Is he on any cardiac meds. Some of them have horrible side effects that can cause all the things you describe. Look up all his drugs and their side effects and see if they fit the things you describe.
Nobody wants to loose a spouse that they love but he has good cause not to want to live in this state of health and all the antidepressants in the world will not change that so you may have to accept that and keep him as comfortable as possible for whatever time he has left. Hospice will probably accept him because of the malnutrition but just a stroke on it's own would not be a viable diagnosis. Do you think he realizes he is hastening his own death?
if you get any more threats from the family call the police and get a restraining order. Are any of your family willing or able to come and spend time with you so all this is not on your shoulders alone. Are you by any chance a second wife? there is often a lot of antagonism especially if there has been a divorce? I have no right to pry into your private affairs but it does help people her to better understand the situation and give better advice.
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Mandy, sounds like your husband's family is living in the dark ages when back then there was this myth that one believed that if a husband became very ill, it was the wife's fault.

My Mom believed that myth, and when my Dad had a heart attack she denied it ever happened, she didn't want anyone to think she wasn't a good wife and couldn't take good care of her husband.

In fact, my Mom refused caregivers for Dad, and she didn't like it when physical therapy came in nor the weekly nurse who checked vitals. Mom was determined she could take care of my Dad, but good grief she was in her 90's.
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I think hospice should do an evaluation (if he would consider their services.)

I also think more treatment should be considered for the depression. Obviously what he is taking now is not working at the current dose.

As cwillie says, an evaluation in a psych ward might be a useful step. They try various drugs in a setting where they can be monitored very closely. The intention is always that he will return home, but hopefully with more effective medications.
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Oh, and as to your question -- I found a local in-person support group invaluable. You see that other people face situations similar to yours. They understand what you are going through. They are not judgmental. Sometimes they have found some solutions that might work for you, too. But mostly it is the relief that you are not alone.

Online groups such as AgingCare can provide some of that support also. But if a local group is available to you, I recommend doing that as well.
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He is able to eat by himself and swallow. He has no problem with that.
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Sorry Mandy see you told us hubby is 63 so there is big age difference
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Veronica, she says he's only 63.
While I respect the idea of hospice it he seems rather young to be giving up. Each of us are different, but I knew a man who survived a similar disabling stroke and lived another 20 years.
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