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Guilt about husband

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Hello:

 

after 9 years of home care, I placed my husband in long term care this past April. My husband is a mild mannered guy who was very particular about his care. He can not ambulate and gained quite a bit of weight. He is left side paralyzed and has severe spasticity from stroke. Even with offering very good pay, I had difficulty finding and keeping good caregivers who could transfer him, and when it appeared that a hoyer lift was needed, I decided to move him to a NH. 

 

Now that he is there I am enjoying my freedom to go places, etc. but I am totally guilt ridden. The guilt and sadness about it has me unhappier than I was before I moved him. He is only 64 and is cognitively pretty good, so it does not feel

like he belongs there. Also he barely speaks, is not interested in socializing there at all, and they now use a hoyer lift to move him which means that he waits to get out of bed until 11:45 am and then goes back to bed at 2:30 pm. It’s no life, especially for someone like him who is young and aware.

 

My family supports my decision, and says that it is time for me to live my life. But how? I’m still married to him. I feel I need to visit him at least 4 times a week if not every day. But I’ve not had sex in 9 years and I’m lonely. My husband never was a physically affectionate person, which I always regretted a bit, and he is not interested in sex now. He doesn’t speak to me much, and frequently doesn’t respond to my questions, though I know he heard me because he’ll mutter something if I repeat a question several times. Driving to visit with him and sit in silence is something I am coming to dread. I take him outside sometimes, go to lunch or dinner, but there’s mostly dead air between us. He said he is not angry with me, do that’s not why he doesn’t speak.

 

My kids feel that I should seek out a new relationship, but he was a good husband to me and I can’t leave him in the dust. 

 

Any coping advice or suggestions out there?

 

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I feel that therapy with a good psychologist who is familiar with stroke and stroke caregivers could really help you sort through these emotions. I can only imagine that such guilt clouds any real answers for you both. You need an outlet and a chance to reconcile with your expectations and feelings. You already know after 9 years that being a caretaker and wife is exta ordinarily difficult and I am sure exhausting and truly selfless. Love is not the question here...But self care for you is extremely important. Try not to feel guilty for taking care of yourself and focus on just that. I am a survivor but I know how terribly hard and life affecting being the caretaker can be on those you love and who love you. For now you know your husband is being cared for and you can use this time to address your own emotions. Good luck.

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Your honesty is commendable.  I know, being here for 9 years myself, I have been witness to your situation.  I can understand your pain and guilt, for he didn't ask for the stroke, but at the same time you have to watch out for your well being. You could get hurt trying to transfer him.  I think your family has your best intentions but I wouldn't rush into a new relationship I mean are you through with him? I'm seriously asking lol not being snarky.  Many people have the lack of sexual relations after a stroke. I've come to see men, often after a stroke, don't feel like they are manly enough. They are prideful, it's in their genes. Women go through similar emotions , the common are : Am I still desirable? I can't move the same. I sometime leak ( bladder) and that is embarrassing.

I  am very open and honest with people when I say . .. there is no shame in getting 'toys'. You are cheating on your husband. I know nothing replaces human interactions but this is a crutch   

 

Caregivers/ Spouse are the trickiest. Not only have you had to double up your responsibilities but you, more often than not, keep all of your emotions hidden. https://www.agingcare.com/Questions/cope-with-putting-my-husband-in-a-nursing-facility-151701.htm 

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You are caught between a rock and a hard place. And I don't think that there's a "right" answer as much as there is a"right for you guys" answer. Try not looking at this as a permanent solution-yet, think of i as a respite, and do some of the things you've been wanting to do, but couldn't. Also, look at services that you may not be aware of that may help you take care of your hubby. In most states, for instance, if he receives Medicaid, he may be able  to receive an in-home aid, for x-amount of hrs per week, depending on your state's regulations on this. 

Or, if you can afford it,hire someone to come in for as much time as you can afford. Is there anyone in his/your family who could spell you off for a few hrs. per week so that you can run errands, or take a nap if you want? A while back, one of our members had a similar situation, and told us about a program that helped her bring her husband home from the nursing home . It's called, "MONEY FOLLOWS THE PERSON" .  I'm not sure about what all they do, but their goal, as I understand it, is to help a person transition from a nursing home to the community. You can research what was said about it in Strokenet's archives. Talk to the nh social worker, maybe she's familiar with it. If she isn't, maybe you can research it on-line, as it's a Federal program. While you have the social worker's ear, you may want to ask her if there's anything that the nh can do to help you, like putting him on a diet/exercise program? Is there a physical therapist at the facility who can work with him on pulling himself up with a grab bar, and pivoting? Won't help  you a lot with his care, but may help some.

    When,and if, he comes home, take him to a psychiatrist, or better yet, a neuro-psychiatrist, to be evaluated. There may be a neurological reason for his behavior.

  I'm sorry that this is so long. I just want you to feel comfortable with whatever you decide to do. By looking at all of the options, maybe you can make an informed-decision about what to do. Or, at least you'll know that you looked at he situation from all angles,and overturned all rocks trying to find help.Good luck to you both.   Becky  

 

  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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That's a tough one, when we get married do you remember the vows  we recite, one of them states " In sickness and in health " what if she was sick for 9 years  and the husband had her transferred to a long term care home what would her family or friends think............. to be honest its a no win situation only problem she has to live with her decisions and if you can get over them your on your way to starting a new life .

Good luck because you can't win or make everybody happy on your life's new direction.

Ed  

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I doubt you are going to get the blessings you want from him or his camp about setting you free. You are kind and compassionate and strong enough to listen to your heart. And who knows, a vacation or separation may help one way or another in making a tough decision you already know calls for a fixing.

You should be allowed to live fully.

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My spouse was the one who had the stroke. He survived a massive CVA as a result of a carotid dissection on Nov. 28 2011. He was a month shy of 60 years old and was fairly fit. But his subsequent inactivity has resulted in limiting his mobility. In addition to private physical therapy and a PACE program he attends four days a week, I try to help him do stretching exercises at home but moving his limbs is like trying to push a dead Sequoia off the lawn, except that this tree says 'Ouch!'. We married in 2002 and had almost 10 good years together before the stroke. I felt that not only did I take the wedding vows to look after him but also I was the one who signed the consent form in the hospital when he needed the heroic measure to treat the CVA. It preserved his cognitive ability and his great personality, but the hemiparesis has started to take over in the form of persistent spasticity. I've had to call 911 for help for a Lift Assist several times. Our city responders are great about this but I know they have more urgent things to do. I feel as if the PT people are blaming me for not pushing him to do more. Psychologically I can't. I already make every decision in the house, handle the housework and finances, transport to all the doctors appointments and take notes, and oh, does anyone else feel that they are constantly on call, night and day, for simple things and can't get a full night's sleep? I had to stop working a few years before I had planned because I just couldn't put in the hours. Someone tell me if you've had similar experience and what if anything you can do to get thru it. Thanks.

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I feel for you on this one as no one wins, the only person that really counts is yourself and if you can honestly  live with your decisions than make them and stick with them

Good luck

Ed

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So to address this from the other side of the fence.  I had the stroke (2 1/2 years ago), and physically in good shape but cognitively far from where I was before.  This especially impacts things like taking initiative, reading emotions and so on (and my ability to earn a living).  I am very aware of the distress and pain that this causes my wife, and would support her if she wanted a divorce or a separation.

 

Fortunately she does not, but I can see the burden that she carries.

 

No-one is a super-hero, no-one carry carry on indefinitely.  We are all only human, and can only do what we can do.  As a minimum, I would suggest that you get someone to help (even on a part-time basis), and try to find someone to look after him for an occasional weekend (or however long) to give you a vacation.  You have to look after yourself.

 

It sounds rough, but from the other side, I do not want my wife to be worn down by my illness.  She needs to be able to have a life.

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Reading this I wonder if he should see a neurologist again and perhaps a pain specialist so you guys can get some relief sleep. 

Physical therapists are just wired to want one more set. He is listening to his limits and we can grant him that. Stroke fatigue is real. I would take advantage of when he sleeps to nap too together.

 I think the key is relationship relationship. 

But your tone suggests the good years are behind you??and I hope you live in hope.

 Marital counseling anyone?? 

Or some household help??

What would help you??

Just finding your voice helps me.

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