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

Follow
Share

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?

34

Comments

Show:
1 2 3 4
Good ideas from many. I am certainly not in your situation, however having been through a not so nice divorce (he continued to make my existence somewhat miserable by telling lies, trying to subvert the children, refusing to pay, etc....) I can relate to some of your concern.

Where this is leading to is your concern about discussing your wife and care-giving with a new person or people you meet. Most certainly there are people who don't want to hear anything at all. There are others who will listen and have sympathy, but only for so long. They tire of hearing about it and will likely drift away. The best/most likely companions are those who have a shared situation. These people might most likely be found in a support group. I would recommend both social groups in activities or areas that interest you (you could still find that special someone AND have a shared interest in other aspects) AND a support group.  One allows you to thrive and grow apart from the care-giving (which will continue), the other allows you a safe place to perhaps share your situation and find others who have common interests as well.

You would still have to proceed cautiously to get a good feel for how these others are coping. If you (in general social groups) or both of you in a support group are spending too much time commiserating, it will stilt any relationship you build. You do not want to build it on that part of your lives. Yes, it IS part of your life and always will be, but it should not form the foundation of any new friendships and relationships. It will be easier to talk about your situation with others who share a similar situation, during those times you need to "get it out", but any good relationship would be built on other shared interests and activities - at some point your wife (and their husband) will likely pass away from these awful conditions and then what is left of the relationship?

So yes - get out and try to enjoy life. Even when your wife and others were healthier, there must have been times you did a few things on your own (even if it was working - you build some relationships at work too.) You can STILL care for and about your wife while she is still here, visiting with her, talking to her, whatever you can, whenever you can while pursuing some socialization outside the care-giving. Just getting out among others is good for you and once you can really delve into whatever the activity is, you can have some moments (or even extended periods) of time where those care-giving pains take a back seat and perhaps can be forgotten in the moment and you can learn to enjoy yourself and life again. Don't focus on finding that special someone - focus on reintroducing yourself to life and the world! 

Getting across that threshold, into the "normal" world, is the first step. If it eventually leads to finding that special person, all the better. You will likely at a minimum form new bonds with a circle of friends, perhaps from different walks of life. Life is/should be a series of circles with you at the center.  Circle of family.  Circle of loved ones.  Circle of friends.  Circle of co-workers.  Some of these circles overlap and intersect.  Others may only touch slightly, but you are currently stuck in that one circle.  You need to develop some of the others while retaining this one.  There is no sense in shutting yourself off from life - you are still young enough to participate in and enjoy life, without forgetting everything leading up to and beyond today. You have given up many years, sacrificing for those you love, it is time to make some time for YOU as well as those you love.
(3)
Report

This is a very tough situation. I gather that your wife is the "shell" of her former self, stolen away by the MS. This is similar to any spouse that has been afflicted by a chronic, progressive disease - ALS, Parkinson's, dementia.

I see nothing wrong with your having a "companion." But there needs to be full disclosure from the beginning. Who knows, there may be a woman out there who is in exactly the same situation - a husband in a NH who is a forever invalid.

While I'm sure there is not a 100% correlation, it seems that men are more likely to associate "intimacy" with sexual activity. Women are more likely to consider intimacy as something in the "emotional" realm. However, intimacy is NOT the same as sexual activity - nor is it the same as emotional connection. (Plenty of people engage in sexual activity without intimacy or emotional connection.)

So, I recommend doing some soul-searching to figure out which you are actually seeking from an outside relationship. Maybe it's not really sexual activity you want - maybe what you really are seeking is some type of "emotional connection" with another human being who understands you well. This can be achieved with a close friend who knows much of our history, such as a college classmate.
(1)
Report

Two comments: the first is that an internet dating site gives you the opportunity to make your situation clear anonymously and without embarrassment, from your very first post. Some sites let you clarify your education, religion, interests, and any hangups you have. Even being a very short man can make you feel pretty awful! That’s only one of the many issues that are easier with an anonymous approach to a large pool of people. You can start contact with letters or phone calls, to check out even more – even if you just talk about your problem with someone who is interested. It’s another approach to what you have just done on this site, but doing more than just venting.

The second comment is that many other cultures would deal with this situation by taking a second wife without divorcing the first. There might be ways with ceremonies and legal arrangements to make a second relationship seem more respectable than just ‘taking a mistress’. But first find a friend who might be any sort of helpful partner.

Best wishes
(1)
Report

Salisbury, I am with you. It's not ideal, but it sparkles and makes my time at home with my husband tolerable. Because I am happier, I can be calmer and more supportive. My husband too is happier because I'm not often morose and depressed. Does he know? I don't know, but he knows I'm there for him and doing my best to be a pleasant partner. None of this is ideal, but it is what it is, and each person has to find their own way. Thank you, Istuscany, for bringing up this sensitive subject. May we all be supportive and non-judgmental, helping to preserve dignity and kindness.
(3)
Report

You cannot nor should not start dating women. This will make you feel worse not to mention the situation you will put the women in. What you can do is to join support groups as suggested here by others.
(1)
Report

I know a woman, who was part of 2 couples who were best friends. Both spouses got cancer. The two without supported each other through the entire thing,,, and a few months after the spouses passed,, got married and lived happily for about 20 years. It was a wonderful thing for both of them, they had shared memoirs and their spouses would have been happy for them. I agree with those who said look for others in your boat, either in a support group or at the home. Best wishes to you on this journey
(5)
Report

Going out on a limb here. I understand that lonely feeling, different reasons, but I understand. I like the idea of getting out and doing things in group type settings. If I had time, I think I would do that. It does a lot for you. If it's volunteering, then it's helping while keeping active. If it's weekly nights at the local Variety Club, then it's catching up with old friends and interacting with people socially, and it's also meeting new people. Hobbies are nice to occupy your time. But, I'm going to tell you something my therapist told me.

She said, "sometimes it's not being lonely for intimate companionship, but for just the breath of the living around you." In other words, go out and find a group of people you like that like you and take it from there. Don't try to cram a square peg into a round hole. Instead search for things and people that interest you. Who knows where it leads? In doing this you get to actually get the lay of the land, so to speak. You'll find a lot of things and ways have changed, even among your peers. It will help you adjust to life outside of all of the responsibility, and when the time is right, if ever, you will be better prepared for a relationship that will be understanding instead of assuming. I think you should do what is right for you, but be cautious, and accept that it may be a few times of hope dashed before your finally get a win. So be prepared for that. Then again, you may find you freedom has suddenly become too valuable to risk on one person (sorry for the bluntness). Now is the time to do the things that you wouldn't or couldn't do before because you gave up those things for your love. And you can always love your wife no matter what and still love and take care of yourself. I don't know if it's right or wrong in this situation. Honestly, I think many people keep themselves from discovering what they truly like because of this. They become robots to the wheel of fate, and get crushed under it.

Good luck to you.
(6)
Report

I am in my late 50's. I was diagnosed with dementia/early onset Alz, two years ago. My DW and I have taken care of settling our finances and all other legal matters. I have discussed with her what I want for her in the future and have told our two adult children and their much older brother from previous marriage, in no uncertain terms I want my DW to get on with her life and don't given Mom any grief. We do have one child still only in elementary school, who I believe is much too young for this discussion.
My symptoms seem to be getting significantly worse since Christmas. I have told my DW, that my wish is when I can no longer be cared for at home to put me in MC hopefully more than 100 miles from where we live. I don't want her to spend the rest of my life feeling like she has to visit me everyday. Especially, when I can't remember the life we have shared. I want her to be able to develop a friendship and love for another man that is as special as what we've enjoyed. My DW is in her very early 50's and is in good health and has a lot to offer someone else.
We have been faithful to each other since we were married. I was was diagnosed with a form of Muscular Dystrophy in my early 40's and now Dementia, and she has never wavered in caring for me. As far as I'm concerned, she has done everything I've asked when I've needed help. Now, the time is closely approaching where she needs to think about having a life for herself.
I have given up all legal interest in our property and finances so that hopefully she will not be financially wiped out by my illness. I know I've been devotedly loved by her for over 25 years and when she is ready, I want her to share her love with someone who can enjoy their time with her, as I have enjoyed my time with her. I've had a perfect wife for well over 20 years. When she feels the time is right I want her to proceed on the next part of her journey. I've been greatly blessed.
Istuscany, I wish the best for you. I am lucky that I had to foresight and presence of mind to share my wishes with my family, for my family, while still of sound mind. Hopefully others will read this and perhaps it will help them do what they see as best for their own families.
(14)
Report

When my husband had his accident 20 years ago, one of his doctors told me I would go through the same feelings a woman who divorces has but different. I thought of those I knew who had divorced, U did experience much the same. But he also said I would have feelings as when someone's spouse passes away & I have a widow friend. Yes, it seems I experienced much of those feelings but the Doctor also said, it will still be that & more-very different. Yes, All of those & Very different. Even with all the hell & advice, even I who is living this without any real understanding so obviously others can't totally understand, try, as they may. Gos Bless
(5)
Report

I have been in similar situation going on 21 years now. My husband was in an explosion & in the hospital 8 months & 2 & 1/2 years to walk again. We are Blessed in so many ways & he is an amazing man able to do more than most. He has a 'can do' attitude to life. We both saw psychologists , Doctors & others to understand our situation. As for intimacy, I cringe if he even touches me yet can hug anyone & everyone else. Psychiatrist described it as a mother/ son relationship yet obviously still very different. I want more for him & for me yet he does not want a divorce I have suggested many times. NO ONE can understand anyone's situation unless they experience themselves. There are many good things but we All need touch, to hold & be held. I am very honest but never flaunt. I wish I had a real & clear answer but it IS difficult. I have had a couple outside relationships over the years, lasting years with his Blessings. They would even come & help in our couple acres at times. I want for my husband to have a complete Relationship just as I want that. He encourage me but it never seems completely right or moral yet I know I am a good & honest lady. I don't tell everything but if asked, always honest. His sole purpose in life seems to make me happy. Our finances in our 60's is nearly impossible to live apart & I worry how he would be on his own. It is very complicated, especially to those who don't or can't understand. Very lonely as our kids & friends try to understand but I know they are not comfortable when I try to explain... We have many good times but without others to enjoy with, the 2 of us, while we are a couple.. We aren't. So much guilt & longing to just hug, hold hands, cuddle & more. I, too, have sought answers from professionals. A Psychiatrist suggested buying 2 homes next door to one another. I could deal with no sex if only we could touch. It is only on my side, not his, which gives me more guilt. We are a rarely spoken or understood part of society & everyone's situation is different.
(5)
Report

1 2 3 4
Related
Questions