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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.

Dear Caringfriend 2,
I was diagnosed with Early Onset ALZ over 4.5 yrs ago. I've spent a lot of time on Aging Care learning a lot on this website, and sharing my own thoughts with the community. A couple of years ago, my DW and I had a conversation that I brought up, telling her, when it is time for me to go to Memory Care, put me in a facility 100 miles from our home. I don't want the family to feel like they have to spend every last minute with me while they are trying to have a life of their own. Two of our children are in their 20's, one is a teenager.
I want my DW to feel free to go about building a new life for herself. My DW has been the great love of my life, excellent mother and we've shared household responsibilities evenly. I told her not to be afraid of finding someone to date and maybe marry when she is ready to, she should do whatever she wants to. My DW is 8 yrs younger than me, I'm early sixties, she's early 50's. I know that I am declining and based on the stages of ALZ, I'm sure I have crossed over in to the mid stages. I've expressed these opinions several times of the last few years. We've been practicing our faith together since we started dating 27 years ago, married 25 years in the early summer coming up. I've also made my wishes known to our children and I told them "do not give mom any grief as she begins her new life." " Life is for the living."
I want my DW to be able to spend time enjoying life with a man she can share as exciting life as we have done. Perhaps you can share these thoughts with your friend. I know my views are not commonly held beliefs. We've been faithful to each other and always managed to get through all of these years never having a fight. I hope readers find these comments helpful.
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HLA1111 Dec 22, 2020
That is a beautiful answer and I wish you well on your journey. I'm so sorry you have to deal with this curse. Your family has been blessed with an open minded and caring person.
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Years ago, Sandra Day O'Connor's husband was in a memory care facility with Alzheimer's. He was at the stage of no longer knowing who she was in relation to himself. She shared the story of going to visit him one day and he was sitting next to another female resident and they were holding hands and smiling at each other. People always think that they have the right to judge and criticized her for being ok about it. She said that the disease had robbed her of her of the husband she knew and loved. With the class she always displayed, she said as he no longer knew her, she was pleased he was finding calming companionship with another.
Continue to be the supporting friend, with no judgements.
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20Eagle16 Dec 22, 2020
Waterspirit...I'm glad you get the concept. So many on this post do not, which makes me think that they were never a caregiver for a person with Alzheimer's as I was to my mom. Sandra Day O'Connor is one of my heroes and was, indeed, a very classy woman. Thank you for reminding us.
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Hello Caring Friend 2:

I could be your friend. I have struggled with this issue for years. At the risk of calling in the wrath of the assembled throng, here is my train of thought.

First let me set the stage. I realize everyone's story is unique. Here is mine:

When she called the police on me, when she accused me of having an affair, when she thought I was planning to kill her, etc, I was told by the experts that "It is not her, it is the disease." I sure thought it looked like her! I was then told by a dr. that I was the trigger for her aggressive behavior.

He then added "It is not her, it is the disease." I went into deep soul searching mode, trying to figure out what I might have done to trigger her behavior. I was then told "It is not her, it is the disease." After hearing this many times, I began to realize "It is not her."

I have her in an excellent home with outstanding staff. They know that if they ask me to, I will stand on my head in the middle of the interstate.

After "not her" called the police on me, accused me of an affair, etc., I began to realize that, just as people had said, "It is not her." I realized that "her" is gone. There is a body that used to house the woman I loved. She is gone from it.

Enough backstory.
I discussed the lack of companionship with some of my older, widowed relatives. They understood the aloneness.

I know I have done all I can do for her. I know "her" is gone. I also know I have more yesterdays than tomorrows. I know I have been alone for five years. I know the past three years have been exhausting and the past summer was hellish. None of us has a guarantee of next week. So after some soul searching and discussion, I have decided I will remain married to my wife, however I am going to seek companionship to do things, travel, and share experiences. I will explain my situation to whoever I meet. If that is a deal breaker for her, then no big deal. However, I am not going to put the rest of my life on hold while "not her, the disease" runs it course and does its best to ruin my remaining tomorrows. As I said, I have done all I can for her. I am also doing everything I can for "not her."

Perhaps this was a bit long, a bit convoluted and will even anger some people. If my reasoning makes you want to call me names, strike me down, or impugn my character, I will say that I am willing to fight for your right to say it, but I don't have to agree with it.
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Mrsrubee Dec 22, 2020
So well put. I totally agree that we have an obligation to care for our spouses, but there comes a time when doing that at home is no longer feasible. At that point, I believe we must see that they get the best care possible and, if possible and helpful, visit often and chat by phone. But I also believe that, if we survive to that point, it is finally time for us to live a normal life again. And, if that includes a new romance, it is well deserved.
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I will not have the popular opinion here, but "til death do us part" can still stand while engaging in a healthy relationship with another, in this particular scenario. The spouse is well cared for and not forgotten or neglected. We are human beings with companionship needs. I do not advocate extramarital affairs. If the LO is still engaged with family and supported until the end then the spouse has fulfilled the "til death do us part" in my opinion. Life goes on, and this disease can go on forever. Mental health for the surviving companion is important as well. That being said, if he is going to beat himself up and feel guilty then that will not be good either. He needs to be able to live with his choice without concern for the judgement of others. People will always be ready to judge. I know if it were me in that home, with no mind left, I would WANT my husband to have happiness, as long I was looked after. Life is too short and crazy to wallow in misery and I don't want to be source of someone's misery.
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At 70 and having lived and cared for my man-child husband for several years due to his dementia, I seriously doubt I’ll be in the market for a new love when I place my DH in care. I’d be too afraid of going thru this again to give any man a chance. But I absolutely believe that anyone who has cared for a spouse with this despicable disease DESERVES such happiness, especially when they continue caring for their ailing spouse.

With a physical disease, your spouse is still the person they were before getting sick. Dementia, however, is quite accurately called “the long goodbye.” Dementia chips away their identity until you hardly recognize them. If I outlive my husband, I don’t know that I will grieve. I’m grieving now the loss of the man I shared so many years with, the loss of our plans for this stage of our lives. Your friend is giving his wife everything possible and it sounds like he plans to continue doing that. I do not believe it would be the least bit disrespectful for him to have a new relationship. If the roles were reversed, it’s what I would want for my husband.
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Mrsrubee Dec 22, 2020
BTW, I’m not in any way advocating for ANYONE to abandon their ailing spouse. I think you still have responsibility for your spouse, but I think you deserve to have a new romantic relationship if you want to.
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This is one of the most interesting and even mind-changing threads I have read on this forum. I am (81), and just lost my wife to Alzheimer’s after (64+) years of marriage. The math is clear-we were each other’s sweetheart since (12) and married at (17). When I first read the opening comment by his friend, I was angered. “Until death do us part “ makes us what we are as Christians ( Catholic) in my case. And, I must confess, my first reaction was to think Friend2 had an ulterior motive, but that is clearly not the case.
But as I read all of the extremely well worded comments it became very clear that this dilemma has no one answer that fits. Lewey Body dementia is very different from Alzheimer’s, in that the physical characteristics of lashing out almost always have to be dealt with in a facility. In my case, I was blessed to have resources to care for my wife at home for ten years. I actually loved taking care of her, but I was able to touch, caress, even kiss her everyday, many times a day. That is not the same as no physical contact with the one you love because of Covid.
I am certain this man will figure it out for himself and do what is best for him and his wife. “Moving on” doesn’t mean abandoning his wife; it might mean something as simple as an adjustment of attitude or a realization of hope that his time for happiness will still come and it will be so much more awesome if he gets there knowing that he was faithful to his wife and their marriage vows.
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Wyoaviator Dec 25, 2020
When you bring up Lewy Body, you make a direct hit. Of course no one knows the truth about what she has, but I am convinced my wife has Lewy Body. I told some people tonight that I have met the "till death"part. I am now dealing with the "in sickness and in health" part.
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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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CaringFriend2 Dec 19, 2020
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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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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CaringFriend2 Dec 20, 2020
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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This is a deeply personal issue as you said . The one thing I’ve learned in my 73 years is none of us knows what we will do until we are in the actual place the one we are judging is in. And then the main lesson is not to judge or even opine but to just be there for them .
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Wyoaviator Dec 25, 2020
I agree with you......none of us knows what we will do until we are in the actual place the one we are judging is in.

A relationship involves two people. The disease affects both partners but in different ways.
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Dementia in a loved one becomes a grieving process in slow motion. It is very difficult for those who knew the person when they were in their prime. Everyone is different about how they handle it and what would make them feel better. Let him take the lead. He has been a very good husband, but it's also OK for him to do things that will make him feel better. For me, with my mother, it helped when I accepted that her state of advanced dementia is a human condition that I have to accept. I had to lower my expectations about what I could get from her, and focus instead on what remains of the relationship, as it is right now, and what kind of a daughter I want to be. I want to 'have her back' and to continue to love her. Encourage him to get grief counseling from his religious advisers or from a grief counselor, and maybe even join a support group, and also to be active in activities that involve other people (during the pandemic, everything social is more difficult and the pandemic itself is a cause for grieving).
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OldBob1936 Dec 22, 2020
Thank you for this very empathy-filled comment...I especially identify with a "grieving process in slow motion."
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