After years of caring for your spouse with dementia, when he/she no longer recognizes you, when is it OK to move on, while still caring?

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After years of caring for your spouse with dementia, when he/she no longer recognizes you, when is it OK to move on, while still caring?

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My dear friend was diagnosed with Lewy Body Dementia more than seven years ago. Due to her frequent violent outbursts, her husband had to place her in a memory care facility. He chose a very lovely private pay facility with high staff ratios and an excellent reputation. He has done everything possible in the past seven years to insure that she is well cared for; he visited three or more times a week (a 1 ½ hour drive one way from their home) until the pandemic hit, took her for outings and nice meals outside the facility, bought her nice clothes and did everything possible to make her life as good as possible.

The disease has progressed to the point where she sleeps a great deal of the day; she no longer recognizes him; she has difficulty with balance and walking, frequent falls and incontinence, so outings are no longer possible; she eats using her fingers, rather than utensils; she has lost her language capabilities; and has started to forget even music and dancing, which were the best ways to communicate with her these past few years. Otherwise, her health remains excellent, and it is possible that she could physically survive for a number of years.

I speak to her husband once per week to see how they are doing (I live across the country and cannot visit them), and to give him the opportunity to talk and share what is going on. Up until recently, he always maintained a positive attitude and was hopeful and enthusiastic.

Now, after months of COVID isolation and seeing his wife very infrequently, he seems very depressed and sad and it feels like he is losing his ability to maintain his positive attitude around his wife. He has been firm in his belief that he must remain faithful to her until she passes. I respect his decision, but I think perhaps he would benefit from some simple female companionship with someone who could offer him a brighter side of life and perhaps lift his spirit.

I know this is a deeply personal issue, but I’m wondering if anyone would be willing to share their story about how they coped with the long-term lack of companionship, loneliness and lack of socialization while caring for a spouse who is afflicted with this difficult disease and has passed the point of any recognition of his or her partner. Thank you for any suggestions or helpful advice you might share.

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Thanks for your response to me. I appreciate knowing more about your friend’s situation.

I was unfamiliar with the Stephen Ministry. I just read about it and it appears to be a very caring ministry.

I have friends who are members of the Methodist church but I wasn’t familiar with this particular ministry. I enjoyed reading about it.

I have been to weddings in the Methodist church, Christmas concerts and so on. They were lovely.

I am quite sure that your friend has benefited from having a caring friend to listen to his feelings on this matter.

I commend you for participating in a worthwhile ministry. I appreciate how extensive the program educates others on how to interact with those in need.

It is lovely to see a person who is walking the walk and practicing their faith by providing an ear to listen and a heart to care, during the most difficult and challenging time in his life.

Thank you for being a wonderful caring person in his life and in society.

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Thank you so much for your very kind words, NeedHelpWithMom. I was reeling a bit from some of the unexpected responses from my post, and you have helped me tremendously. I appreciate you taking the time to research the Stephen Ministry. My church assigned me a Stephen Minister caregiver while I was caring for my mother in her last year on this earth (she was in the early stages of dementia, but died from complications from a stroke), and that ministry changed my life. It opened the door for me to attend the extensive training class that allowed me to serve in that program. Serving is something which many Stephen Ministers would tell you is as much or more of a blessing to us as it is to the people who are our care receivers. I'm also certified by the state as an ombudsman in long term care facilities, so I've seen and heard a lot that impacts the lives of those who are aging and/or disabled. Thank you so much for choosing love and kindness in your response.

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I feel your pain. Some of us are in very lonely marriages and our spouses are alive and well--just no longer interested in us or anything to do with us. It's painful, embarrassing and a problem that I personally cannot fix, for myself or anyone else.

I MISS the man I married. He changed 180 degrees 6 months after we married. Got a job in his field and has been married to his job for 45 years. Marks the anniversary of his 'job hire' and routinely forgets our anniversary and my birthday, year after year.

Whatever you choose, I personally would not judge you. We only get this one life. I have been without any physical touch or kind words for so many years I can't even count. (actually I can--it's been over 10) I am so grateful for loving sons in law who all see this and give me big hugs and tell me they love me. For grandkids who hug me so hard and long. Were it not for my seeking this love--I think I would have walked out of this marriage years ago. B/C of covid, you can't hug anyone--and it's painful, physically painful.

If you choose to have a relationship, while your wife is still alive I would not judge you one bit. I'll be there in a few years, I imagine.

The wife you knew and loved--she's gone. So sad that people 'die' often long before they spiritually leave the world.

And I am a very religious woman. So adultery is out---but do I want a friendship with a man who would treat me well? I'd adore it.

No judgment here. You sound like a lovely, loving man.

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Thank you for sharing your own story, Midkid58. I am so grateful for your sons-in-law and grandkids who show you how much they love you and how much they care. My friend would so much appreciate your non-judgmental attitude and your kind words. I'm grateful to hear from someone who understands what this pain and loneliness feels like. It seems so easy for some people who have not walked in these shoes to judge the actions or longings of another. I do hope you have a good support system of people who are there for you on a regular basis to listen and to care (and maybe even, post COVID, to give you a hug when you need it. Family therapist Virginia Satir once said, “We need four hugs a day for survival. We need 8 hugs a day for maintenance. We need 12 hugs a day for growth.” - so we all need to work on getting - and giving - more hugs when this COVID is under control!). Stay strong, and never forget how much God loves you.

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Caring Friend, there are some things too close and intimate for friendship; if this gentleman you are about has not brought up this subject I would not yourself bring it up. It is entirely up to him how, when, and in what ways to move on. I have known a woman, friend of my Aunt, whose husband was many years in care, thought he was married to another woman there and would happily sit holding hands with her, and would introduce his visiting wife as "My good friend". She never chose to "move on". She passed through grief at her loss, to being comforted by this relationship for her dear husband.
This is individual as a thumbprint, and entirely up to your friend. I am grateful he has you and you will be ready to discuss this if he ever chooses to.

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Thank you for your response, AlvaDeer. I appreciate you sharing the story about the friend of your Aunt. My friend talks about this - it is not something that I bring up - and I am there to listen to him - not to suggest what he should do. I was just trying to gain some insight into how others have handled this situation, and your story helped.

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Might you be the 'simple female companionship' you feel would benefit your dear friend so greatly? The special someone who could offer him a brighter side of life and perhaps lift his spirit?

Just wondering, because it seems inappropriate for you to be suggesting such a thing on behalf of this man, in my opinion.

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Thank you for your response, lealonnie1. If you look through my other responses, I hope you will see that I am just trying to understand how others have handled this situation. It appears that I did not word my question properly, because it has never been my intention to suggest to my friend what action he should take in response to his loneliness and isolation, and there have been so many assumptions from so many people regarding my intentions. I am here to listen to what he has to say and I do think that helps.

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What exactly was he hopeful and enthusiastic about? Does he not know his life and his wife as he knew her are over? Perhaps he is going through a phase of realization that things are never going to be like the old normal. Humans are capable of making adjustments, but sometimes there is an in between time of turmoil before they have learned to find routine and contentment with their present lives. With the COVID, the vast majority of people are not living normal lives. There my be an extra layer of adjustment for him, but I would suggest to him that there seems to be a light at the end of the tunnel as far as the isolation he is experiencing now, and that life can be good again.

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Thank you for your reply, OldAlto. He leads an Alzheimer's Support Group, and attends another support group (or he did, until COVID) and is very knowledgeable about what is happening. It is true that COVID has added another layer of adjustment. Life is difficult for all of us right now, but this stage of the disease is so heartbreaking for him.

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Why does it have to be "simple" female companionship? What's wrong with just doing more things with his male friends? There is nothing "simple" when a spouse chooses to keep company with someone of the opposite sex, to cure their loneliness. Really nothing good can come from it.

Most of us that are married or have been married(I'm newly widowed)have taken our wedding vows very seriously, especially the "in sickness and in health, till death do us part", and I commend your friend for wanting to do just that. You should be encouraging that, instead of trying to stir the pot.

My husband had a massive stroke a year and a half after we were married,(he was 48 and I was 36)which left him permanently disabled, and our lives turned completely upside down. I am proud and honored to say that I stuck with him through all the many issues he endured(and there were a lot) the entire 26 years we were married. Not once did I ever think of finding some "simple" companionship from another male. I just made sure that I did plenty of things with my female friends, children and grandchildren, to keep me from getting burned out or lonely.

So there are so many other things your friend can be doing to cure his depression and loneliness,(even with Covid going on) other than seeking "simple" female companionship, and I hope and pray that you will encourage him to find those things.

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Thank you for reply, funkygrandma59. I regret that you mistake my feelings of empathy and compassion for a desire to "try to stir the pot." That is not the case. I will continue to encourage my friend to live his life as best he can during these difficult times.

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I would say the depression comes from not being able to be with his wife and COVID. Some men are loyal to the end so I wouldn't even mention another woman to him.

Your wife's friend sounds like she is in the last stages of her life. No matter how physically healthy she is, when the desease gets to the part of her brain that controls her breathing and heart, she will die. Her brain has been dying little by little. And this isolation in NHs to keep the COVID at bay, is not helping those with a Dementia.

Maybe he should see if a Church nearby has an ALZ/Dementia ministry. Some Churches are able to keep the 6 ft, wear a mask rule. This way he will be with people with like problems. Maybe he can join members at lunch or dinner.

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Thank you for your reply, JoAnn29. My friend is very active in his church, leads a Bible study, and leads an Alzheimer's support group, as well. I would not bring up another woman to him. I understand that is not my place. But he shares a great deal with me about how he's hurting and how he misses things like a simple touch - I feel like his "love language" is physical touch - and I just was searching for ways to adequately respond.

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Answering here as a wild eyed hide bound religious Traditionalist- this is a decision that can ONLY be made by the spouse/covictim of this insidious horror.

No one CAN know besides the covictim him/her self.

And any daughter or son that criticizes a survivor parent ought to think forward to how THEY may feel if THEY become a part of the half-loss of lingering dementia.

Friends, extended family, curious onlookers? Can you FIND it in your heart to maintain loving silence and back off from any judgment at all?

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Thank you so much, AnnReid. I feel that you really understand the heart of what I was trying, in a so woefully inadequate way, to explain.

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You are a true friend indeed. Wouldn't it be great if we all had someone caring about our wellbeing as you care for your friend?

I wouldn't suggest moving on to him, whatever that may mean. There are some "sacrifices" that married couples choose to make for each other during their lifetime. If your friend is commited to being faithful don't disuade him, Disregarding one's own conscience can have unintended consequences.

Continue to support him as you have. If he's struggling with depression or even some guilt in becoming detached from her, maybe suggest he speak to his pastor if he has a church, address his problems with his doctor or even seek professional help with a counselor. A dementia support group could help him also. The Alzheimer's assn offers support groups throughout the nation for any and all types of dementia. Go to alz.org.

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Thank you, sjplegacy. You are, of course, correct that it is my friend's decision to make and I am here not to persuade him to travel down an unknown path, but I am here to support and encourage him in whatever choices he makes. He is active in the Alzheimer's Assn, both as a participant in a support group and as a leader in another support group. He is also active in his church, a volunteer in the community, and has a pretty good support group. But, as I've said in a number of my responses here today, nothing can take the place of a hug, a tender touch, or holding someone's hand while being there for them. He wants that, and he deserves to have that, too.

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I’ve just re-read the old Victorian book for girls called ‘What Katy Did’. Katy is a tomboy who has an accident that keeps her bedridden. She learns from her older friend Helen, who was engaged to be married before she became disabled herself (the disability details in these old books are a bit vague). Helen broke her engagement for her fiance’s benefit. He married someone else, he and his wife lived next door to Helen and her doctor father in their small town, both of them loved Helen dearly, and called their first child ‘Helen’.

How does that square up with what any of us would wish for our spouses if we were even more disabled – if we couldn’t recognise them? Would we want to be as self-sacrificing as Helen? Or as kind to her if we were the other survivor fiance or spouse? These old books seem a bit maudlin, but sometimes the ethics are worth thinking about.

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Thank you, MargaretMcKen. I think if my friend could make the choice, she would want her husband to be happy - whatever choices that involved. I think she would be self-sacrificing, like Helen in your book "What Katy Did", and I think her husband would continue to be loving and caring and kind to her, like the survivor fiance and his spouse in the book. But she cannot make any choices on her own anymore and, as a result, he is left in this limbo where it's less painful, perhaps, to just let things be. The best I can do is be supportive and present for him, whatever his choices.

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It sounds as if your friend would benefit more from this stupid wretched blasted virus getting gone as soon as it likes and the sooner the better - that's what has forced him, like so many others, into isolation and separation from the wife he cares for so loyally.

It has also denied him the companionship of all of the people at the facility, professionals and other families, who formed an important community for him. Not only can he not benefit from their insight and their care for his wife, but - much worse for him - he has not been able to contribute to their work as I'm sure he must have done. No visits, no enrichment, no guidance for them as to her habits and preferences. It's been agonising for spouses and families.

I'm not quite sure what you have in mind when you say "simple female companionship"? Unless it's someone who's in much the same boat as he is, I don't see there could be anything simple about it. What sort of special friend is going to provide him with a recreational relationship while accepting at the same time how important his commitment to his wife is to him?

One line I would stick to very firmly is that of NOT making any suggestions to him about moving on. If he initiates any changes in that direction then by all means be supportive, but don't try to start anything. He will when he's good and ready.

And, of course, you could always direct him to AgingCare! - Is he online?

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Thank you, Countrymouse, for responding. I do believe that you are correct that COVID is contributing considerably to this isolation and separation. Even when he is permitted to see his wife, he is not allowed to touch her, hold her hand, hug her or kiss her. And he, like all of us, is affected by the isolation that has come with this dread pandemic. I had not intended to make any suggestions about moving on. I am there to listen, be empathetic and as compassionate and encouraging as I am able. Since the topic comes up from time to time, I was hoping I might have some stories to share with him about how others have coped with a similar situation. I'm afraid I've raised too tender a subject though, considering many of the responses. He has many support opportunities - active in church, active in volunteering, an Alzheimer's Support Group volunteer - none of it can take the place of human touch.

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Sometimes it is the person with ALZ that makes new ‘companions’ in their facilities.

Many spouses find this a difficult reality to face.

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Thank you, NeedHelpWithMom. I think people are far more understanding when the person with ALZ makes that choice to have a new companion in their facility. I find it interesting that people can empathize more with the person with ALZ than with the person left at home who is likely suffering far more from the lack of companionship and touch.

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This question brings the religious moralists out in flocks. One experience I had was a work colleague whose mother had early onset dementia, non-recognition etc. His father divorced her and found another partner. Father said that he had only one life, and this was the only way he was prepared to live it. His son who I knew was totally alienated from his father over the issue. I felt sorry for all of them. It could be worthwhile for your own friend to consider how this may affect other friends and family members, and whether he will need to create a whole new circle of support – not easy to do as you get older.

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Thank you, MargaretMcKen. The pastor of a church I attended made the same decision your work colleague made. He divorced his wife with Alzheimer's and went on to make a new life for himself with a new wife. This is such a personal decision, and there are no easy answers - but I don't see it as so "black and white" of a decision, as some people do, and try my best to have compassion and empathy, even when someone travels down a path I would not choose. My friend's son has already given her husband permission to "move on" if he so chooses. And, thus far, he chooses not to. I doubt that everyone in his circle of friends and family would be that accepting, and it is good to read the feedback here to see how strongly many people feel about this issue.

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A friend's Mother met a new 'friend' after years of home care then NH visits to her early onset Alz Husband. She seemed extremely comfortable with the concept, no guilt.

But such a personal choice. If your friend wished to seek counselling to explore that topic I would certainly support that.

My Grandma who was very practical, would visits old friends with Dementia until they stopped recognising her. Then she said goodbye & let them go.

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Thank you Beatty. Your friend's mother made a brave choice. I am grateful there are people like her in this world who are not afraid to keep living when all else around them falls apart. Your Grandma made a choice I've seen a number of people chose. It is also a brave choice. My friend will not say goodbye to his wife - he will always be there for her to the very end. But he, too, has a life to live. It would be nice to see someone there for him to support him in what has become a very difficult journey.

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You are wonderful to be there to support your friend. This is really his call and I would not encourage other companionship in that way. Encourage clubs, sports other things without the female focus. Maybe a men's only support group. There are such things.

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Thank you, gladimhere. Of course it is his call and I realize it is not my place to suggest a direction. I listen with my heart, and do what I can to support his choices. He is involved in many things - church, volunteer work, Alzheimer's support group leadership. Sometimes you just need someone to give you a hug or hold your hand.

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This question comes up from time to time and is very controversial.

Be forewarned! No preaching from me but others may.

Your ‘friend’ is the only one who can decide what he wishes to do in this situation.

Has he told you that he wants a female companion?

Some people are not the least bit interested in being with someone else. Others long for companionship.

He’s capable of figuring this out for himself.

If he hasn’t shown a need to discuss such a personal matter, I wouldn’t bring it up.

That’s just me. I am not a prude but I would feel very uncomfortable addressing a topic that is so intimate.

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Thank you, NeedHelpWithMom. My friend has discussed this with me on several occasions. I do not bring it up, nor do I suggest a path he should take. I have been trained to "listen" as a Stephen Minister, and what I hear is the words of a man with a broken heart who is exhausted and lonely. She loved him with a passion unmatched by any other, and he loves her with that same passion. He's doing everything he can do for her. I knew her well for years and I believe she would want him to be happy and have a life. He is knowledgeable and will make his own choices. I just want to support him in any way I can.

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After years of caring for your spouse with dementia, when he/she no longer recognizes you, when is it OK to move on, while still caring?

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