Are there any caregivers of spouses among this group?

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I take care of my husband who just turned 61 but looks more like 90. He has a feeding tube that enters his stomach just above the belly button. He has a degenerative muscular disease of some kind that is not ALS. He refuses to do any of what was taught him to better his condition, example exercises physically, breathing exercises taking a walk with the aid of his walker etc. He seems content to just sit in his chair all day and watch television. I am thankful he can still do for himself when it comes to his feeding and medications, which all goes through the tube. I tried to take him on a trip to visit relatives about seven hours away and he did not do very well. He spent one day in the motel room and another when he wanted attention and I being the one who worries I am not doing enough, took him to the VA Clinic there only to have the Dr. prescribe a pain med to add to the ones he already takes. Then he threw an absolute fit in front of family our last day there, so I feel I cannot travel with him comfortably any longer. I felt that the only way I could get a break would be to take him with me, I feel that that is no longer an option. I do have a week planned to go to a Mexican resort the first part of May, but I need to find some one who will come in and check in on him and give him aid with getting in and out of the shower. My son lives near by and said he would be glad to stop in and see him daily, but that is all he will do. So I am going to check with the VA office here in Pahrump and see if they have program for Veteran's. I truly need to get away, but I cannot help worrying about his care. Sincerely, Sherry in Pahrump Nevada

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Saable,
Please thank your husband for his service from a desert storm vet :)
I wish y'all the best
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To Deci55, I want to extend my deepest sympathy. I can't even begin to understand what you are feeling right now, except for emptiness, loss and what comes next? You probably really need to rest and reflect on all that has happened. Please know that we care and wish we could help you! I hope you have family to help you get through the details. Prayers for you and your family!
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My husband just died today
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The other thing I wanted to say is that my husband is strong and healthy other than the Alzheimer's disease. All he wants to do is watch TV too. Sometimes I can get him to walk the dogs with me. He loves the dogs.
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I am the caregiver for my husband. He is 78 and I am 69. I just retired two years ago to take care of him. Before that he was able to fend for himself. He has had Alzheimer's Disease for 8 years now. I think we are at the same point in care as you are. The summer before last i drove 8 hours to Myrtle Beach for a vacation. I had to do all the driving, of course, and after we got there I had to do all of the work. He couldn't even remember how to put up the beach umbrella or to screw the umbrella holder into the sand. It was just too much work and I felt that I didn't really get a vacation. So I am not planning anything more in the way of a vacation. I can't afford to pay somebody to watch him. My daughter offered to take me away for the weekend but then I have to find someone to watch him and worry if they are doing a good job! And I don't know how he will be without me. I have to help him do everything. He can't remember how to brush his teeth or wash himself. I have a feeling diapers will be next on the horizon. It is time consuming to say the least. But we try to find humor and we laugh about things like this past week, he put on all his clothes backwards. He couldn't figure out how to button his pants! I said you have to turn everything around and I had to show him how to do that. But we were able to laugh about it which was great. I try to put as much humor into everything I can. He likes to laugh and it is good for both of us. I feel like I am watching him go down daily and it is difficult as he sometimes wants to make love. But it turns me off because he doesn't remember how to do it. And I have to tell him what to do. I try to discourage it as much as possible. I hate that I can't do that anymore with the man I have loved for so many years. It is just gone as far as I am concerned. And I used to love it so much! I am glad to talk to another woman who is going through what I am going through. Please keep in touch with me. My name is Nancy.
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I am a caregiver for my Mother who is 91 and in her last stages with Hospice. It is a very hard road to travel, you feel guilty, trapped, angry, confused and just want to cry and go for a lunch with a friend, but can't seem to find help. Have you asked his Dr.'s if he is eligible for Hospice? This means they feel the patient has 6 months or less to live. It is hard to think that way, but they do provide respite care, nursing, bathing, and supplies related to his illness. If he is on disability, contact your Senior Services and see what help they can give you, not just the VA. If you haven't done it already, I highly recommend a CD by Suze Orman, call Will and Trust Kit. It is so easy to use, It has Will, Revocable Trust, Advanced Directive and Durable Power of Attorney for Health Care, and Financial Power of Attorney. It is so important for EVERYONE OF ALL AGES to have this done. You fill in the blanks, make copies and get friends, 2 and take it to your bank to be notarized. Copies then be given to all family members involved, Dr.s and Hospital. It takes a few hours to do, but your mind is at ease. I also suggest making funeral arrangements now. For both of you. We chose cremation, and that is all set up also. It is less stressful for everyone. There is help, contact Aging Service, any organizations having to do with Seniors, even if he is under 65, perhaps they can help. They also should have adult daycare centers. He doesn't want to go anywhere because he is afraid, he feels safe at home. I hope this helps a little bit. Pray and ask your friends to pray for you as well.
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I've been the caregiver for my husband for the last 10 years.... This is not a short term thing . You need to find time for yourself. I'm trying to take it one day at a time. I try really hard to remember his dignity to give him some control over his life. This is not easy because he needs me to care for him 24 /7. Because we are together all the time he gets upset when I'm not around. This makes it hard to get "me" time but even just a workout can help with the stress. I try to time it when I know he will be sleeping. I still tell him I'm going and what we will do when I get back. Sometimes when he can I take him with me and set him up near me this is harder because he may need to go home. One day at a time
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For the past 17 years I have been the sole caregiver of my HUSBAND, MY MOTHER-IN-LAW, MY STEPMOTHER and MY FATHER. I am totally burned out, nay, incinerated as a caregiver. And there is NO END in sight unless you count the rear ends I wipe as I change diapers.
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I am the caregiver for my husband, 75, with advancing Parkinson's and PD dememtia. Saable, your experience with visiting was similiar to our last attempt at traveling 600 miles to visit my family. We aren't able to travel anymore either, and I feel trapped in this caregivers' role. He helped raise my siblings and loves them, and still while staying with them was upset over being away from home and "his stuff" whatever he means by that.
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Contact your husbands social worker at the VA.. as others stated there is a respite program.. I was told about from my husbands social worker, in fact I just picked him up this morning from a 2 week stay.. Here in the Jacksonville Fl area you HAVE to take it 2 weeks at a time, if you short stay you can lose it in the future as there are many veterans families that are not 100% looking for respite. Also here, you have to make the appts for respite months in advance and may have a choice of dates, but usually not what you are looking for.. I would start with his social worker, we were approved days instead of months when she arranged it all. Good Luck and enjoy your vacation. I spent one week in the Caribbean visiting a friend that works there..
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