My wife’s in a home after decades of MS and my caregiving. I’m married, alone and lonely...

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Warning, this is long, but I needed to write. I never seem to hear talk of that 800 pound gorilla in the room. Most conversation is about caring for moms and dads/the elderly with dementia/Alzheimer’s, Parkinson’s etc, issues which I also had to deal with. Dad struggled with Alzheimer’s for 10 years before he passed. What a nightmare that was. I can’t, nor can anyone imagine what he went through. During that time, mom was diagnosed with cancer, she passed away some months after dad. My sister had came up from San Diego and stayed with mom during her last few months. Thank god I have the sister that I do, it was so stressful a time. The more stories I hear from people about how family issues have been, the more blessed I think my sister and I are for the relationship we have. Turned out that it was the time my sister and brother in law were also closing their business, and I was going to be a part of that. I was a full time caregiver for my wife and arranged for my wife’s sister and mother, and a caregiver to work out times they could be there during this time, when I wasn’t. I would shop and prepare days of food for them when I was home for a couple days each week. So, I was traveling the 45+ minutes in LA traffic, (which I really hate) from my house to mom's place. I’d help my sister and mom as much as I could. Then I’d drive to San Diego and help with the closing of the business. Then back to my wife. This was a stressful triangle of travel that couldn’t be helped and I forget how long it went on for. I know it was months. I couldn’t be as involved in mom's personal hygiene issues as I was with my wife, so my sis did that along with organizing everything mom needed. We took turns sleeping with mom while I was there. The gorilla in the room for me is the following. I’m married. My wife is going on 4 years now in assistive care due to MS. The quadriplegia, cognitive issues (very dementia like) and everything that goes along with it, like bowel issues, severe osteoporosis, eating and drinking disorders, infections etc. I’ve been her full time caregiver since 1998. She was diagnosed 1983, 3 years after we were married in 1980. We weren’t old then, I was 29, my wife was 30. Now we’re early 60’s. What comes after this? I hate being alone. It’s depressing, and lonely. My time was so occupied with caregiving for her, and now find that I have no motivation or life of my own doing. Our 29 year old daughter, along with family and friends, wants me to get out and have a female friend for the companionship and purpose in life after caregiving. Someone to be intimate with, not only sexually, but more importantly, emotionally. I too want this. But I can’t help but think about this in depth. I’m not going to divorce my wife. It’s just not a thought for me. She’s lost so much and I know how devastating divorce would be to her, and I won’t do that to her. Yet how does a relationship at this age manage to work, within this issue? I meet women, but in the sense I describe, they really can’t relate to me nor I to them. Even the occasional female acquaintance will say, why don’t you have a girlfriend? Well what woman is willing to be in a relationship under such circumstances? Certainly not the one in front of me making that statement. The rules we all grew up with work for most, but not for me, or the very few who are in a similar situation. We have all thought that the rules of companionship are all encompassing by way of social standards. Not so anymore for me, and it’s awkward. I bristle at the self righteous who have no clue whatsoever when they say how wrong it is to have a relationship outside of marriage. Or someone without the experiences, who says, I don’t see a problem...just get out there. Don’t get me wrong, circumstances change and I’m aware of that. Things happen that are outside the scope of what society sees as the norm. I don’t feel those, norms, always apply. So what do we do? The only people who can truly relate and truly understand are those who have gone through similar circumstances. I don’t want to openly have constant conversation of just caregiving issues and problems, and I don’t think that would be the issue. It’s just knowing where we’ve been, what we’ve been through and are going through. Some don’t see it, that’s ok for them, but others do. Where are these people? Are we all hidden away in our homes feeling trapped and miserable after giving ourselves to the care we have given, waiting, for what? A knock on our door? I’m a caring healthy person who wants a life. I want to join in the promise of not having to live alone anymore. It’s not that I was alone all those years with my wife, and mother in law who had come to live with us after her husband passed away. Although I cared for her as well for about 16 years, she tried to help as she could. A sweet elderly woman with mild dementia. Although I didn’t like what I was doing, I loved my family. It’s just that I’ve been lonely all these years and want to be happy. I don’t want to try to twist myself away from the happy I want, so I can accept the lonely I no longer want. It’s enough to know that the happy life my wife and I had is long gone and won’t come back. The woman I married is lost and the years between then and now are in the rear view mirror and it has been a tough journey for us both. The question is in my writing. I don’t want to live a lonely life without a companion to go through it with and have the opportunity to be happy. I’m trying to find out how to do something about this. I don’t have a road map for it. Where do I go?


lstuscany, you are in a very tough spot. What to do? Dating while a spouse is ill can become an emotional nightmare. You find someone, you fall for her and she with you, she wants marriage. Then what? You don't want to find yourself being Michael Douglas in Fatal Attraction. Think about it, any women you date is dating a married man.

What is it that you really want? Is it just being with someone or around other people? Any buddies you can call upon to go golfing, playing poker, etc? Watching sports? Try the route of being with guy friends first.

Women tend to have a lot of girlfriends to keep them busy without going the dating route. Less emotional impact. They can be themselves without trying to impress someone.

Try joining clubs that would be of interest. A hiking club, a chess club, history bluff club, cooking club, etc. to find new friends. Also check out local classes at a community college, or county offered classes on various things. Revive an old interest.

There is one question to ask yourself. What if things were reversed... would you want your spouse to find a companion? I realize every case if different. Hopefully I gave you food for thought.

FF, you are such a wiz at making me look both ways. I hope that it gives istuscany ideas at how to go out and socialize.

You poor man, only you would know how your wife would feel, I love my husband with all my being and I know for me, I would want him to have happiness and companionship. I think it's great that you will not divorce her, be sure you don't abandon her if you find someone that is willing to have a relationship based on your terms. I'm thinking that you may want to relearn how to function around normal activities again, being isolated makes our outlook a little one sided, I know, been there. Follow FF advise about activities or clubs, classes etc. This is how we meet people we have things in common with. I would stress that you not blurt out your story until there seems to be a mutual desire, this could send potential friends running, being a caregiver in your shoes is a scary, hard thought for people, let them know you a bit first.

Come back to AC, all of the lovely people have helped me in my caregiving journey tremendously. Truth and lots of different perspectives helps us find balance. I hope we can help you as well.
Freqflyer, my wife and I have both discussed this issue multiple times. Broached, originally by my wife, years ago. I could think of duplicate reasons for this to be, just as you consider the opposite. Neither you, nor I, can assume, truthfully, what one will do. Only what you feel you would or want to do. All of us only find that truth when confronted. Mind you, the idea of intimacy is more emotional then it is physical, at least in my mind. If one thinks otherwise, then that is in their own thoughts. For me, having a relationship with someone who knows nothing of a caregivers life by their own experiences wouldn’t work for me as I agree, it’s a no win situation for the one who has no like experiences to draw upon.
I will tell you, that I know where I’ve been over the past 30 years. I’ve been lonely and alone not because I don’t have friends, but because try as they will, they cannot relate to what myself, or someone like myself has been through. One doesn’t get second chances for the days past. I will do my best to be happy, which I am not. None the less, the chances you note, I am willing to take. I am willing to be hurt by my choice if that’s what happens. I will never hide from anyone, where I am in my life. Who my wife is, and what my intentions are. If I can find someone to relate to in conversation, then I will have good conversation. If we find we like each other’s company enough to see each other more often, then that’s what will happen.
None the less, without judging, I believe I have a different perspective then you have. Neither right or wrong, but different.
As I’ve learned and as I’ve said, this is the 800 lb gorilla in the room that isn’t spoken of for fear of being judged. I’m not afraid of that.
Thank you for that, isthisreallyreal. It is the ability to relate that I seek. That’s as I hear it from you as well.
I have been involved in groups along the way. I was a competitive cyclist and am part of such clubs. I’m also a gardener and like to cook, as those would give me a hobby while staying at home. I raised our daughter with the idea in my mind, that what I do and how I handle such a life situation would have a notable impact on her and who she might find herself attracted to. If I were abbusive, she might be attracted to that, if I would abandon, she would note that as a make trait, if I were kind and thoughtful, she would have a better chance of being attracted to that. I know I was her example of what would be acceptable as a male. I love my wife, and daughter more than I can say. My daughter and I have all been there for each other. As a note, at 17, my daughter actually came to me to ask if I had a girlfriend, which I would not have thought a question she would ask. When I said no, she looked at me, this brings a tear, and said how I need someone. Such a realization, whereas youthful, tells more of the heart she has.
My daughter is now married to a wonderful man whom I love. He is a well spoken kind person who is well educated and thoughtful. He was a Captain in the Airforce, having flown two tours of duty in Iraq. They are expecting our first grandchild. I have such a dichotomy of happy and sad. They want me to live with them, but I will never move while my wife and her mother live in a home nearby me. Things will change, and when they do, I will change with it. I foresee locating a home for my wife close to our daughters family and I will be there for whoever needs me. I didn’t have a roadmap for caregiving with MS, nor do I have one for my future. But I look forward to a better future.
lstuscany, I've been in the room with that 800 pound gorilla. It is one (of several) aspects of caregiving that is different when caregiving a spouse instead of a parent. And it doesn't get talked about a lot. When a kid or grandkid comes over and says, "How are you doing, Mom/Gram?" you are not likely to say, "Well, OK, but I'm really horny." Or even, "I get so lonely when your Grampa is here physically but not really present."

The advice to join clubs and attend events and renew old hobbies, etc. is fine as far as it goes. In fact it is wonderful. But I don't think it is often given by caregivers of spouses. Social interaction is wonderful, but it does not replace intimacy.

I'd suggest joining a support group for spouses of people with MS. Not necessarily to meet people you could grow intimate with, but to interact with people who largely "get it" and don't need a lot of explanations.

It is natural when meeting new people to exchange basic information. What you do/did for a living, the size of your family, other places you've lived, etc. If you don't reveal that you have have a beautiful, successful 29-yo daughter and that your wife has been institutionalized for four years, I would consider that withholding important information. I don't think I'd trust you if I found out later in the relationship that you are married. I don't think talking about it a lot is appropriate early on. ("That is an important part of who I am, but I'd rather talk about something more fun right now.") But just stating the basic facts seems honest and courteous to me.

You might be surprised to learn how many married people are celibate because of their spouse's health. It is not usually what was planned or intended, but bam, there it is, a part of your life. This person whom you love dearly and who means the world to you is no longer able to share physical intimacy. I know this to be true of several people in my family. There are a lot of people coping with it -- Google "sexless marriage due to health" -- but it is not a topic of open conversation.

So, is it OK to have intimate relationships with others, under the circumstances? I think that is a very personal decision. I definitely think it is not acceptable to hurt your spouse, so that may mean some deception and sneaking around if you decide it is OK. And I definitely think it is not acceptable to deceive your new friend. Your friend must know and be OK with the basic facts of your life.

But other than the "Thou shalt not hurt your spouse or your friend," I don't have any rules for this. If I knew your wife and then I happened to run into you and your friend at a restaurant, I would not judge you. (And I certainly wouldn't tell your wife.) But some people would, and that is something you'd have to be able to accept, too.

A counselor might be able to help you sort out your feelings and make decisions. But not all counselors get it, either, so I'd specifically seek out one who has experience counseling caregivers.

Here's an off-the-wall thought: When a woman asks why you don't have a girlfriend, could she possibly be signalling that she would consider the role? Is it just curiosity or might she be flirting? Give it some thought!

What a devoted husband you have been in such sad and lengthy circumstances.

All I can do is think what I'd want for my husband if I were incapacitated. I'd want him to go on and live his life to the fullest. I would feel like I had taken up a huge amount of his time and effort and stunted his social interactions. He should grow and be able to socialize and find happiness. If that includes finding a female friend that may turn into an emotional and/or physical relationship, then so be it. He should not have to suffer loneliness because I can no longer think clearly, walk or move myself or communicate with him.
The only thing I would not want is for him to forget me in the facility (so visit me once or twice a week) and please don't talk about your new friend to me. Not that I don't want hubby to have her, it's that I would feel bad because I CAN'T be the wife I would want to be for him. But I would be happy to see him happy.

In some folks, there can be a guilt component to this (of going against biblical teaching) but, in the 6 years I studied the bible, I don't ever recall a situation like this. You would not be divorcing your wife nor leaving her destitute. You would not be abandoning her nor stop loving her.

You just need to be nurtured and have a close relationship. Men and women are naturally attracted to each other for a reason. Close relationships (friends) of the same sex are great but it doesn't fulfill the inner need of man-woman companionship.

I would not judge you for whatever your choice would be. Yours was a huge sacrifice and you can't be told you can not seek out what the rest of us already have.

I hope you find your dreams.
I am assuming you visit your wife in Assisted Care - have you ever asked the person in charge about other spouses that are in the same position? You can't be the only one - lonely is lonely and it sucks.

I think if it were me, I would look to see if there is anyone else that comes to visit and seems to be 'alone' all the time. Start with, "can we share a table for lunch?" and see where it goes. As lonely as you are, you really can't know if you will even be able to "be" with another woman while you are married. No one can know until and unless the situation arises.

While my wedding vows are sacred to me - I do believe that God understands and we're not designed to be alone. We too are "pack" animals and want to be with others.

I would say, talk to the administer of your wife's assistive living and then take it one day at a time. I will pray for you to find your answers and if it is in your 'cards' I pray you find a companion.
There are many women who'd be friends with a man in your situation. You'd undoubtedly meet many people in support groups, hiking and groups. You've already said that you'd be upfront about your situation and that you will not divorce your ill wife, so if you start out as just friends with the women you meet and take things slowly you'll almost certainly meet someone nice.
Lstuscany, you have been given lots of good advice here. I hope you take it.

I registered astonishment at this topic because this is just where I am. My husband is not in a home. He is AT home.  But between his hearing loss and his dementia, I am alone and have been for a very long time. Years. Years and years.

I have a male friend. OK, more than a friend. We are trying to "wait." Tough. We are not getting younger and this could go on for a very long time.

I thought I would lose my mom almost ten years ago because her memory loss/dementia was so bad. Guess what? She is now in memory care but still with us.

So, this can go on for a long, long time.

And as far as "waiting" goes, it puts me in the awkward but very real position of "waiting" for my poor husband to die. I find myself feeling slightly relieved if he oversleeps from a nap or in the morning. A voice in my head says, "Is this it, God?"

This is not right. I know that.

At the same time...

My more-than-a-friendship has brought a sparkle and energy into my life that I would never want to live without.

So, there you are, for what it is worth.

Dear lstuscany, although this may not be exactly what you are looking for, from what you have written you seem to be an honorable man. You have spent a large part of your life caring for others - not what you wanted; however, you chose to provide in whatever ways you needed. This is a difficult path.

A couple of thoughts, I would suggest you see your primary caregiver (or one who specializes in caregiver stress, burnout, etc.) for a full physical. I agree with another, consider seeking the assistance of a counselor/support group.

Finally, have you considered finding ways to have an intimate relationship with your wife? It seems clear that a sexual relationship may not be possible, however intimacy with another can come in many forms. I could be wrong, but although I read you are lonely and want companionship, I feel an underlying sense that you really don't want it from outside of your marriage. A movie called The Notebook comes to mind.

Another thought, are you involved with a church? If so, there may be some resources available through the church, such as pastoral care, Faith Community Nurse, support groups, etc.

Here's to jumping on this gorilla and bringing it down to size.

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