Married Still, but...

Virgil61

Hi all - I know this topic has been mentioned in this forum before.  Has anyone come across a good reference site/book/etc. on the subject?  My wife doesn't remember me or the kids or her brother, friends,  etc.  She may have some minute recollection - that I'm someone she might know - when she sees me at the MC when I visit her each week - but even that is waning.   She will be my wife as long as she is alive, period.  But there is nothing much left between us in regard to a relationship.  I remember a lady on here saying she missed a "starched collar".  That has stuck with me.  I miss sharing.  I am working through this (I realize it is a personal decision and don't need to be reminded of that).  I would appreciate though any thoughts, criticism,  or whatnot, from anyone that has any input.  Especially if someone knows of where more info might be available.  TIA

Beachfan

 Hi Virgil, 

I have no references for you; I have no research to cite. In reference to your observation, I can only say my feelings are in my heart and in my gut. Today marks week eight of DH’s placement in a memory care facility. He doesn’t know me, the kids, the grandkids, anyone from his past.  I love him with all my heart, I always will, I miss him, he’s there, I am here. 

I am trying to reclaim my life. Spending time with family, attending the grandkids’ activities, planning to return  to the beach in the summer, browsing the library for hours, keeping myself company.  Then, out of nowhere, I realize he’s not coming home, he’s never coming home. Momentarily, it takes my breath away. My heart aches. So I open the door, step outside, maybe scrub the bathroom floor, maybe walk the kids’ dog, pull weeds, sweep the patio, anything to take my mind off the sadness, the despair that would envelop me if I let it.

It’s not the golden years I would have chosen for myself, for DH.  It’s the best I can do for now. I hope others chime in with more reassurance. Stay strong.

CStrope

Beachfan, I so agree, not the plan I had for this stage of my life.  Finally met with a therapist yesterday, and she started off with the obligatory questions about if I'm depressed, aka suicidal, etc.  I told her I have no suicidal thoughts, I'm just sad.....sad about all that is changed, all that will never be, and everything that I wish I had done.  

Yes, for most of us, we're still married, but what is that marriage now.  On a very personal level, how is this stage of our marriage much different than when our LO is gone.  It's a question I ponder a lot. This stage is constraining, and lonely, frustrating and terrifying all at the same time.  Will the next stage be filled with sadness, but also freedom and hope?

Crushed

A year ago I stopped referring to DW as "my wife"  except in a historical sense.   I refer to her by name to those who know her and ask about her. It was and is part of my acceptance that our marital relationship is long gone.  My total responsibility and affection clearly continue.  

It was a wonderful 45+ year relationship that I treasure beyond description.  But it is over. She was the love of my life,  but the operative word is WAS.  This is not a "sickness" but the total loss of personhood.

I have been alone in any meaningful sense for 4 years.  I don't know what I want or what I can take.  I am a first class homemaker,  and as my kids say "Dad has only one move with women  and it's through the kitchen"     So ladies always liked my cooking, DW certainly did , so did her mother    

I may find someone, I may not.  I am kind of numb as the moment

Marie58

I believe it was on this forum that I first heard the term 'married widow'. That is tragically a very accurate description of what we are all facing.

I was right where Beachfan is now for the first 14 months of my DH's placement in MC. Then 2 months ago DH had a big decline. He's now bedbound and can't feed himself. I go in twice a day most days to feed him. A strange thing also happened when this decline hit him. His eye contact changed drastically. He looks into my eyes as if he knows me again. My love for him has grown through this time. I didn't think I could possibly love him more than I already did, but this eye contact phenomenon has been a huge blessing. (His eye contact has improved with everyone, but not to the same degree that it has with me.) Our adult son was in tears the first time he knew his dad didn't recognize him. Then he was in tears again when that seemed to change two months ago.

I don't have any resources for you, just my experiences. Blessings to you and your family.

Paris20

My husband still knows me and our daughters but he’s sometimes shaky when it comes to identifying grandchildren. I feel pieces of him peeling away, bit by bit. Each layer represents time lost, not just in terms of any future but also in the loss of a long, shared history. Coherent conversations are impossible. Now he just yells at the TV or sleeps all day. All I can do is keep my own body and soul intact. I miss having a husband. He is gone, yet he is not a stranger to me. It’s a kind of limbo, grieving someone who’s still alive. My best advice is to do all you can to make peace with the situation.

loveskitties

Hi Virgil,

It is human to want a relationship with someone who can at least be a companion to enjoy things in life. 

For some people, it is the opinions and attitudes of their families that drives decisions like this.  Some are encouraged to seek companionship...others would be outraged.

It also depends on what you are looking for now or may want in the future with the right person.

It also depends on finding a person who could recognize and accept your continuing feelings for your wife.

Lots to think about.

I wish you all the best as you work thru this stage of your life.

M1

Virgil I just wanted to say hi; I don't have any particular words of wisdom for you, but I was glad to see your post.  I have wondered how you were doing.

There have been other similar threads in the past.  I remember one person (I think male) who found a female companion, and she ended up moving in with him and his DW with dementia and helped care for her until her death.  It worked for them.

I think everyone on this forum understands the loneliness, and I don't think anyone here would be judgemental about any situation.  There are as many solutions as there are individuals I think.

Stay well.

Joe C.

Virgil, The desire for companionship is just part of the human condition and there is nothing wrong with that desire. My relationship with DW was stolen by AD long before it was time for placement and for the past 3 or 4 years I have been struggling with loneliness. Through this process I have experienced guilt over just thinking about just the “possibility of dating”, acceptance that the day might come when dating might be a reality, and then developing “my own” moral guidelines around the possibility of dating. My main guidelines were first and foremost that I would never do anything that could hurt DW in any way, second I would not do anything until I let the people closest to me know what I was feelings/considering and finally I would not involve another person in my life while I was a full time caregiver because that would not be fair to them. Everyone I discussed my feelings with were very supportive. In fact when I told my stepdaughter of my struggles with loneliness and thoughts on dating she responded, “if you find someone who makes you happy, I will welcome her into my family with open arms”. Each spouse/caregiver needs to find there own way to continue forward with their life. My humble opinion is that if we stay stuck in our past life/relationship then AD will take two people. Now that I have placed DW my time to move forward is at hand and I will do so with my head held high. If you google “dementia caregiver spouse loneliness” you can find all kinds of articles on the subject in everything from the Wall Street Journal to People Magazine.

David J

Virgil, this topic has been raised here before, as you know, with many of us chiming in. You would think such a common issue would be covered in professional journals more than it is. I did a little searching and found the article listed below. 

My wife has been in memory care for four months now, and even before that our relationship had moved past romance, emotional or physical. It is a part of my life that may be over, and I accept that. Or, who knows? I might meet someone while not looking. 

You need to do what is good for you. 

https://www.psychologytoday.com/us/blog/in-the-name-love/201903/should-it-be-ok-someone-have-affair-when-their-partner-is-seriously-ill

Quilting brings calm

Virgil 

I have no idea of your age or any other particulars, but why don’t you start by just finding people that you want to be around to do things with.  Church, senior centers, volunteer situations.  That will naturally lead to small social gatherings. Maybe you will find a female that is in a similar situation to you. Maybe she just wants someone to go to dinner or a movie with.  Maybe she wants someone to travel with, or to just hang out.  Maybe it develops into more as time goes on.  

Your choices aren’t be totally devoid of female companionship or be in a committed relationship with someone else.  There’s lots of areas in-between.  And time to figure it out 

David J

Another one:

 https://www.researchgate.net/publication/285655438_Extramarital_Relationships_in_the_Context_of_Spousal_Alzheimer's_Disease_A_Mixed-Methods_Exploration_of_Public_Attitudes

Shevie

Hugs! I don’t have any answers.

Gig Harbor

In our area there is a very active Newcomers Club and they have over 60 different groups within it. It is not just for those new to the area. They have a FB page that lists a lot of activities and they look really fun.

Buggsroo

I miss my husband, his sharp wit, his zingers, his empathy and just himself, now I am a caregiver, no longer a wife. Sadly that part of our life died off a few years ago. Now he is a little boy who wants food and reassurance all the time. 

The other day I felt really lonely, I phoned a friend and we talked for an hour and caught up. I felt human again, I felt like I had rejoined the human race. So, that said, I guess I am at that stage in my life, where companionship is important, male and female and not in the biblical sense. I guess in many ways, I am gingerly putting a toe forward, but I believe that I am not ready for anything but friendship. 

I totally get why people in our situations think about their losses and yearn to have back what  they have lost, no judgement here just rueful understanding.

Stuck in the middle

Meals on Wheels, in their ads for volunteers, say loneliness is as deadly as smoking a dozen cigarettes a day.  So, if you provide the starched collar for a lonely woman to lay her cheek, just call it "doctor's orders."

Virgil61

Hi All - Many thanks for the responses.  Very helpful for me just to hear your opinions/thoughts.  I appreciate the "between" a committed relationship and none at all that Quilted made - that is exactly where I find myself headed.  I appreciate the references by David J and Gig.  I think we all share the feelings that Cstrope made by our "plans" being altered.  I find myself also referring to my wife as "my wife" only in certain scenarios as Crushed mentions (isn't that odd...) - I also feel numb in many ways.  58 used a term "married widow" - isn't that so accurate!!!  I have told others about that.  Paris mentions "layers peeling away" - that is another good description that we all can relate to.  Skittles' points about a relationship is good but the few that have presented themselves, I have backed off.  We all know why that is - and that is why I posted this.  M1 - thank you for your thoughts, 21 was tough for us, eh?  Joe C. - I like the guidelines you have set and have set pretty much the same for myself (I keep thinking though, what my wife would say if she could be herself again for a few minutes and talk to me....would she agree with the guidelines?  I know she would but I still think that. /  We actually DID discuss this years ago and she said what every loving wife would probably say...."I want you to find someone and live your life honey! I want you to be happy!" ......that seems to make it even worse for me somehow...).  Buggs mentions feeling "human again" - I understand that completely.  I have never heard the reference to 12 cigarettes a day and loneliness that Stuck made - seem applicable though.   I had packed most of my wife's things the month after she went to MC and moved them to storage.  I left a half dozen changes of clothes thinking that she would be home for the holidays.  Never happened.  I just went in last month to pack up the last of the clothes and when I pulled the LAST blouse off the hanger - it hit me hard (seriously, like a gut punch, it came out of nowhere!), she isn't coming back.  Ever.  Beachfan made a reference to that.  It is a sobering and final feeling with an elegiac impact.  I have never been so sad in my life.  I know some of us will move past this and some of us won't (we will all rememeber/never forget though).  I am positive and know that I will be able to move on and will ultimately work this out.  I miss sharing.  You all have played an important part in this journey of mine and I hope somewhere along the line I might someday in return contribute something to one of your very special situations (kinda like the feelings of "Sonder" I guess).  Again, thank you.  Hope the weekend is good for everyone. 

Jeff86

Virgil —

I think this is a great post.  You contribute a great deal to this community with this and other posts, challenging us all to wrestle with important, thought-provoking issues.

Every night, when I put my DW to bed, I am reminded that this remains a legal marriage but not a functioning marriage.  I tuck her in, give her a kiss, and think to myself, this is like putting a young girl to bed.

One way I think about this issue of potentially seeking some companionship is what my DW would think if she were not AD challenged but were looking at how things are now.  I have no doubt that she would not want me to continue to experience the intense loneliness that is my present lot.  

I don’t know if placement is in our future.  But I can well imagine that it opens up possibilities. I subscribe to the view that AD has to take one life but it’s even more profoundly sad if it takes two.  I hope not to let it.  

M1

I like thinking about what my partner would say if she were still in her right mind, and I have no doubt that she would want me to find someone and be happy. We actually did talk about this years ago, when she was diagnosed with lymphoma about two years before the dementia changes started. With a 15 year age difference, there’s been plenty of reasons to think that I’ll outlive her. But when you’ve had as wonderful a relationship as we’ve had, it’s hard to imagine anything comparable. I guess at this point I’d look forward to being pleasantly surprised.

Here’s hoping we all survive to find out.

Stuck in the middle

A friend lost her husband to AD last summer.  Like many of us, she had been a de facto widow for years.  She joined an online dating site and, after a false start or two, has a boyfriend.  She didn't say he was a complete replacement for the man she loved for 25 years, but she seems happy.

There was a great song, many years ago, that went "Someone is looking for someone like you."

Take care of yourself, M1.  You have a lot to offer.

M1

Aw shucks Stuck. Sweet. Like I sat, I can't imagine it right now, but there are times when I just don't want her to continue to suffer all the indignity and loss. I wish for an end and a new beginning, both, but it daunts the hell out of me.

Hang in there Virgil. Keep letting us know how you're doing.