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?
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.
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.
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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
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.
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.
I want you to know that I get exactly where you are and that I decided to do something different. I stayed with my beloved, we got on with living together. We did everything that non wheelchair people do but from the wheelchair. It was work for me, hard work and I know you understand how very hard that is. He stopped talking at around year 13 and was not able to move his own body (not even his head). For the time he could move better he did many things from the wheelchair and we were happy! Feeling lonely and alone is a natural response. For me, it wasn't that often because he was with me. I wonder, if you could stay home and care for your beloved wife and become her main care giver with respite help if that would be a surprising wonderful thing. Care giving is not for the faint of heart. I know I was called to care for my Davey, and He was worth every day I gave to his care and as his care giver wife. I am not saying it was easy by any stretch, but when he died, I held my head up knowing that his quality of life was excellent. He laughed all the time, mumbled thank you too many times to count, and gave himself to me in ways that only someone in the same situation could understand. I know, if I had the choice of putting him in a care facility, going on with life without him and thinking about my own happiness alone, I would become even more unhappy. We all make our choices, but I pray you will step back and look at the opportunity you are missing out on by having your wife by your side, no matter what her body and brain are doing. I sure wish I could meet you face to face and tell you my life story with Davey, it was the hardest, most rewarding and best decision I ever made. Time creeps on when you focus on self too much, and it flies by when you are focusing on someone else. I never thought I would have a happy life with my spouse having MS, but all things considered, I really did!
perhaps find a place like Galeray92 did?
You live in a large area so there must be something that would meet your needs - you would meet other 'lonelys' & learn from them how to proceed with getting on with improving YOUR quality of life - they will be a good resource for making a new road map of your future - you may have to try more than one group to get the right fit
We "get" each other and understand the loneliness. We provide companionship both physical and emotional for each other without any expectations and it works out well.
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.
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.
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.
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.
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!