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Oh boy, this is a delicate topic. It adds an additional layer to an already complex situation of being caregiver to a spouse. I feel like I'm living with a stranger, not the person I originally fell in love with. Most of the reasons I fell in love with him have been ravaged by the disease. Any advice is welcome.

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Remove yourself from the nursing role by bringing in aides and/or a visiting nurse as ordered by the MD. Go one further and get yourself a housekeeper or cook or laundry maid. Free yourself from drudgery and enjoy your time together. Those are the memories you will want to keep.
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I do not want to read into your question. What specifically are you talking about when you say "intimacy." ? Please speak your truth so we can make better suggestions.
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The loss of intimacy -- specifically a sex life -- adds another layer of complexity and loss. It is hard to want to have sex with a man who reminds you of your grandfather and your grandson at the same time. And yet, the love may still be there, stronger than ever. Compassion and caring and cherishing don't always equate to sexual desire.

How each couple deals with this must suit the individual situation, and it may change as the disease progresses.

All I can say with certainty and from personal experience, is that Mimijazz you are not alone in your confusion about sexual intimacy with a "stranger." It is painful when the love of your life changes so dramatically.
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Pam, I did have relief from drudgery. I had visiting nurses, a PCA, housekeepers. You are right -- that does help free the caregiver up to spend quality time with the spouse. We did build wonderful memories throughout the journey with dementia. I still enjoy looking at the scrapbooks of things we did together. None of that solved the severe change in our sex life, though.
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I have a patient. He's 65 and morbidly obese (400 lbs). He needs total care including cleaning after bowel movements. He should be in a nursing home but he's hanging by his fingernails at home. He has aides 6 hours a day. He's wife works full-time.

When I met with him a few weeks ago he wanted to talk to me about his relationship with his wife. He told me that he'd like to kiss her but she always turns away and he couldn't understand why. Now, this is a man who is very intelligent. No dementia whatsoever. He's very aware of how difficult it is to care for him and when his aides aren't there his wife cares for him. And when he expressed confusion to me as to why his wife didn't want to kiss him anymore I couldn't bring myself to express to him that it was because she has to clean him up after he has a bowel movement and has had to do so for years. They've been married 12 years so it's not like they have a lifetime of memories and tons of kids together. I would think it would be very difficult to maintain sexual feelings for someone when you have to care for them and their body around the clock.

Another example: the wife of a friend of mine sustained a serious brain injury. She never recovered and is totally dependent upon my friend for all of her care. She wants to have sex with her husband (my friend) but he can't do it. She has a catheter and is obviously mentally impaired but she becomes angry at him when he turns her down. She doesn't bring it up often but when she does he always does something special for her instead, like a movie night. They were legally separated when she sustained her injury and he never divorced her once she was hurt because she would have been made a ward of the state. Now he's caring for his elderly parents and his wife. If that doesn't take away any sexual impulse one may have I don't know what will.

How you feel is understandable. You can satisfy your husband's need for physical intimacy with holding his hand or sitting with him on the couch. But I don't think there is anything you can do go back to what you once had with your husband sexually. But that doesn't mean you have to stop making a connection with him.

This is a good topic, not talked about enough, and I'm glad you brought it up.
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I didn't mean to sound coy. Of course, I'm talking about our sex life. As some of you have expressed, it's difficult to feel attracted to someone whose behavior may be repulsive or strange. Making it worse is the changing role from peer and partner to caregiver and nursemaid. Sadly, my husband is still interested and every so often will ask:"Are we ever going to have sex again?". I answer:"Of course" and change the subject. I make sure not to get into a debate. Sometimes I feel like it's my "wifely duty" and it's not his fault that he has this disease, so I should just do it. However, that's not being true and respectful to myself. Thanks for your responses.
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I hate when the pat answer is "hire a cleaner, nurse, cook, driver, etc." Easy to say, but when finances are uncertain a fiscally responsible person cannot do that. I'm caring for my husband (2 years since a major stroke). We lost our family business because of the stroke. We could not claim disability and are waiting until the last minute to claim social security to reach the maximum dollar amount. Insurance (medicare and supplement) does not take care of the extras that caring for a disabled person requires and I am limited to earning outside the home because of time and other famiy business responsibilities. Sex is the last thing on my mind! It's darn hard to feel sexy and aroused after reminding hubby to clean up and having the pee bottle bedside! I know this answer doesn't help anyone, but it is insensitive to say "just hire someone"!
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I have no desire for a sexual relationship with my 600 lb husband after doing all of the care for him it is done. He constantly talks about sex but I try to tell him our relationship is on a whole different level now. He has a CNA that gives him a bath three times a week and a nurse but that does not change the level of care that I have to give.
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I care for my wife who is a cancer patient and has not wanted intimacy for some time. Much of it is physical issues but, for her, I think she just doesn't have the desire after her body has been ravaged by disease. I have gone through all the emotions from feeling sorry to being resentful. My wife did not ask for this disease and she is fighting for her life. So, I try to remember that she needs me in other ways. There are times where I feel my life is passing me by and I am missing out on a sex life and a relationship while I am a healthy person. Lately, I am trying to focus on being grateful for my own health and realizing that my life is not passing me by. This IS my life. Things happen for a reason and my health allows me to help my spouse. This is what I am trying to do. Sometimes, I give this positive outlook the middle finger. So, its a work in progress. Having a more positive outlook and seeing the good I am doing can only be good for my overall health and that of my spouse. Doesn't solve the intimacy issue, I know.
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It is hard to deal with when you are in the midst of things, however this is a question that should be discussed with your partner before a life changing illness strikes.
Now, the only thing to do is what you feel is best. I would say that if your loved one is completely oriented but their are other physical issues that make intimacy undesireable, than you need to be upfront and honest about that .
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Just keep deflecting him as you are doing, and please don't feel guilty. Your role has, by necessity, changed big time. You are not alone. In fact, I'd have to say that what you're feeling...NOT feeling...is par for the course.

If you look at it as being your wifely duty? I don't think it will take long to feel resentful. You're ALREADY during sooo much more than your "wifely duty" that I'm surprised you and dozens of others on this site, haven't grown angel wings.

We are not super human. We do the best we can...
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It's hard for me to understand or relate to someone who doesn't want or need affection and physical contact. For me, I can focus too much on this issue and create resentment and frustration. Remembering that she has many physical issues and does not feel comfortable with her own body helps me to deal with the lack of physical contact. We do have a relationship, platonic as it is, and its a good friendship. A good friendship is a blessing so I focus on that part.
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Sometimes all some of us need is a hug to help connect with a spouse/sig other without trying to give the indication that you want more than just a hug.

If one is mentally alert but an illness has taken a lot out of the person, please be careful what you say to your spouse/sig other. They are oversensitive to their own situation, and it is so easy to take what someone said out of context. And hurtful things can last a lifetime :(
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