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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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Is there anyway he can join a zoom meeting with a support group?  if during this virus thing I am not sure he would want to "meet" up with a female companion IF he wants to remain loyal to his wife.  Of course you don't mention the age of these people but my dad was 91 when he went into a nursing facility, my mother 87. He passed in May 2020 and my mother would visit with him every week up until the placed closed to visitors due to the virus.  now my mother had no intentions of looking for male companionship when her hubby was in a NH but even if she had been younger, I doubt IF she would have even thought about it.  He can get interested in some hobbies, learning a new language over the internet,  its hard right now with going out into the public but if he wanted to volunteer at a store, animal shelter somewhere where he can be around others but without becoming involved (which could happen IF he let it happen and you would not want to lead anyone else on)........he needs to find a hobby, call the NH to find out how she is doing for now.  I wish your friend luck. maybe someone has a different idea
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I guess all you can do is be his friend and be supportive of whatever decision he makes. Let him know that if he did seek and find a relationship with another woman it would not be wrong and you would certainly not judge him for it. Sometimes this is what a person needs to hear. Many times they're willing to live a life of complete and utter misery in a situation like your friend's because they don't want people to think less of them. Let him know that you won't think less of him.
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He'll know when is when.
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Ricky6 Dec 2020
Stay out of his business. He will do what he will do when he does it.
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Imho, since I am not him, I cannot advocate if he should or should not seek companionship. I cannot be that bold. Prayers sent.
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Depression and loneliness are not the worst things that can happen to us. How many of us here have experienced it more than once in our lifetime?
Both of my hands are raised.
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bolers1 Dec 2020
I kinda agree with you. I believe that we've all experienced depression and loneliness once or twice or thrice in our lifetime. Get up and live or......
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If he feels he must remain faithful to the end, then please do not encourage him to violate his conscience. If he does, he will regret it. I'm sure he is sad and depressed, but he will not feel better if he does something that goes against what he believes to be right.
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TouchMatters Dec 2020
If he is committed to his religious beliefs, as evidenced by his behavior thus far, no outside encouragement will violate his conscience. He will determine how he needs to live and what he needs. Another can support a person where they are; they cannot change them by encouragement other than asking the person to look deep inside themselves for their own answers.
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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 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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He knows better than you that he is depressed and sad. Given that he is firm in his belief to remain faithful nonetheless, and visit 3X a week, while arranging for excellent care, and doing other things to make life best possible for wife, you should say absolutely nothing about getting some other female companion for his own benefit. Which would very likely compromise the above (frequency of visitation, etc.). I don't even agree with you on the premise of lack of recognition; although I don't have a credential in memory care - I'll bet neither do you - and even that is not the determinative factor. Faithfulness is. In sum, a stunningly bad idea - possibly the worst I have read on this website.
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Is he seeking your opinion, or is he seeking your presumptive forgiveness, should he decide to "move on", being you 're her very close friend?

As a person of deep faith, I absolutely believe that God knows our hearts, and the reasons why we do the things we do, both good and bad. And I like to think that our reasons for doing what we do stands even greater judgement that the actions themselves, if you get what I'm trying to say. It is very easy for any of us to sit in judgement on another person's actions - but no one knows what they will do in any given situation until they are faced with that situation. It's like that classical ethics question: "would you steal bread to feed your starving children?"

If he is discussing this with you, one of his wife's close friends, he might be, even subconsciously, looking for - well, not necessarily approval - but understanding for his feelings and compassion for his well being.

Either way, you are doing both your friend and her husband a huge kindness keeping the lines of communication open, and providing him a "safe" place to have this type of discussion.
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NeedHelpWithMom Dec 2020
Wonderful response, NGE
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My feeling after reading this a good suggestion would be to see if he would like to have a pet. Be it a dog or cat. I suggested that to my Mom after my Dad passed away when she was lonely and it was a blessing. I searched for a dog that would not shed, fully potty trained, loving. Oh my goodness, I could not have asked for anything better. She had him to hug, play with, take out, show him to others, feed him. Gave her a reason to get up and think and see happy things, without too much work. A visit to a local shelter might be the answer. Then he can be very faithful. Might even be where he would take the dog in the car when he wanted to go to a coffee shop after a walk. Suggestion to see what he wants to do. Then let him think about it..
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Louise315 Dec 2020
What a wonderful idea! Companionship doesn’t always have to be romantic. A pet is a fantastic way to ward off loneliness.
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It depends on the marriage vows he made to his wife.
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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 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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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 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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I hear you. Ive always had a very black and white answer to this, but I’m not walking in his shoes. It sounds like your friend wants to honor God through honoring his marriage commitment. So the question is, how can he have female companionship AND honor his marriage vows and God? I’m hoping for his sake that there is a way to do so.
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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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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 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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I don't mean to sound insensitive but "til death do us part" means just that, no loopholes, with the exception of adultery (Matthew 19:9). Personally I have found empathy talking to widowers. My wife is still living but the grieving process is very similar to what they have been through.
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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 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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Especially since the husband values marital fidelity, encouraging "dating" or a special female friend is not a great idea.

Other social contacts, hobbies, and volunteering would be better involvements. With social contact restrictions doe to the Pandemic, it will take more creativity to find opportunities for involvement, but it can be done. If he needs your help in finding contacts, you can do that.

Look online for church or community service projects, classes, support groups, DIY projects for donations and so on. Feeling useful and involved is a big part of a ppsitive mental attitude.
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OkieGranny Dec 2020
Annie, those are excellent suggestions. There are many ways to be social that do not involve dating or romance. Perhaps he can be someone to talk to for other men who are in his situation. Staying faithful to his wife in this awful situation is a testimony to his faith.
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I took care of my mom right to the end to the point I had a feeding tube put in. Despite how incredibly advanced her Alzheimer's disease got she had her very rare moments of lucidity. Mom was on hospice for 2 years and never did she have to get any kind of psychotropics or narcotics, and she died peacefully--really peacefully--at age 90 after battling Alzheimer's for 15 years. Ironically Alzheimer's disease did not kill her--her feeding tube kept her needs. She had chronic kidney disease as a complication of her insulin-dependent diabetes. She had other chronic health issues. God killed my mom a little over a year ago, but I had nothing to do with it. It comes with some comfort mom would have died ANYWAY even if she were a walkie-talkie alert and oriented person from her other diseases. Diabetes is horrible, and that really did a number with her kidneys after years and years and years of it, and her hypertension was also a challenge to control. I kept mom's sugars very stable. Her A1C averaged 6.1 representing excellent control. Yes I used hospice like a home clinic for routine labs and to keep her routine medication reorded. She was only on insulin, Lopressor and multivitamin. Also lactulose for her bowel movements, and Periodex to swab her mouth after her oral care. Feeding tubes require strict oral care so they would not get aspiration pnemonia and her feeding tube required A LOT of care she never had any problem with it.

I kept mom walking as long as I could -- I took her to the park daily for five years to the point she needed a special walker which cost me $800 but it kept her walking for another year. She walked a quarter of a mile in the park and that made her happy. I took her to the mall when I could and wheeled her around. She would do better after that. That had to stop when she forgot how to get in and out of the car, which was very difficult. Mom was only bedridden for 2-1/2 months but even then I hoyer lifted her daily at least twice a day to her favorite chair in the living room. The only time she moaned was when I had to clean her and change her diapers. That was at least 5 times a day. Mom's skin was in perfect condition when she died.

It's been over a year and I still am trying to recover from her loss. However, mom is at a better place. I was her total life support for years and years.
GRIEF is the PRICE of love. You learn to adapt to death, but you NEVER get over it.

The hospice nurse figured she was so peaceful because of her familiar surroundings and she felt secure with around the clock love. I managed her behavior by walking her daily..it took the crazies out of her system. I kept her awake during the day and she slept all night, so I never had a problem with "sun downing". Exercise was the best medication ever.
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NinjaWarrior3 Dec 2020
How did you keep her awake during the day?
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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 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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Lewy Body Dementia sufferers usually hang on for about 7 years, but some people have lived for 20 years with the disease. She is following the usual path of the disease.

It is heart-breaking to see a once vibrant person reduced to mere existence. It is so hard on those close to the sufferer - especially the spouse. During COVID, the hardest part is isolation. Your friend, the husband really needs friends right now. He needs interactions with others on a regular basis: socially distanced, outdoors, online... Helping him to connect, or reconnect, with family and friends (make more friends) is most likely his biggest need.

Starting new romantic relationships is very difficult during COVID, especially since he is already married and has strong beliefs about marital fidelity. When he has grieved the loss of relationship he has with his wife, he will move on, or not. per his choice.
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This is COMPLETELY up to him.
It sounds more like you are asking if he should seek "friends with benefits" since you expressly mentioned "... he would benefit from some simple female companionship..."
You can express you opinion and once you do that drop the subject unless he brings it up again.
I cared for my Husband for 12 years after a diagnosis of dementia and it never would have crossed my mind to seek male companionship. I went out with friends, most happen to be women that have spouses that have dementia. I hosted gatherings at my house and have had single men come to dinner but as friends.
You are correct that this is a deeply personal issue..
No matter what he does he will have people on both sides of the fence on this. There are 2 lines of thought.
You are married for better or worse, in sickness and in health. These are the vows you took.
and
I understand, he(or she) has a void to fill, has needs, still has years ahead of him (or her) and they want/need companionship.
In my opinion both lines of thought are valid and I understand them.

I truly think it depends on the strength of your marriage and how fulfilled in your marriage you are

So, express YOUR opinion and then drop the subject.
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Do sad for both.
I would suggest thst your friend check with meetings with same type people.

They have gathers fir everything now days, just like for people thst their spouse passed so I'm sure they have groups that meet to talk that are spouses with Alzheimers. Dementia, ect.

That would be a good place to start where he could meet and talk to people in the same boat as he is and make friends and see how they deal with things.

Always nice to have people to talk to, male and female that are going thru the same things you are.

Or, he could have her move back home and hire Caregivers or hire a Live In Caregiver.

Prayers
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This is such an interesting thread and I thank you for presenting it.

It sounds like your friend is good at making his own choices and is finding his way through a difficult situation. I do not think it would be helpful, in fact it may be insulting, for you to suggest that he find a woman to hang out with. And as a woman, I would not welcome any advances from an older married gentleman.

I guess what I am suggesting here is to mind your own business. Continue to be a good, supportive and caring friend, as you have been. Many people would be envious of having such a kind friend as you.
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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 2020
Thank you for this very empathy-filled comment...I especially identify with a "grieving process in slow motion."
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Your post could be describing my husband. The descriptions fit very well. I opted for caring for my husband at home because he gets 1 on 1 care for less. Memory cares are too expensive, especially good ones like the one you described in your post. It is a personal decision and it seems your friend has made one that suited him the best.
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CaringFriend2, I'm sorry you have had to justify yourself so many times over. Your letter was perfectly clear to begin with. You have been very kind in your responses.
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You say that "your friend" is "very active in his church and leads a Bible study", and sounds like you are involved quite a bit in your church as well, and that "he has been firm in his belief that he must remain faithful to her until she passes." And yet you say that he's the one who brings it up and not you, and that you are just there "to support and encourage him in whatever choices he makes." You both should know what the Bible teaches on marriage and adultery, and if you were a true "Christian" friend, you certainly wouldn't be encouraging him to sin, if that were the choice he makes. It always concerns me when someone tries to present a situation that is fishy at best, and then try to use God and religion, as a guise. There is nothing Godly about a married man spending time with a woman that's not his wife. Regardless of the circumstances. You either believe the Bible or you don't.
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MargaretMcKen Dec 2020
Funky, it depends on which bit of the Bible you want to believe. Abraham and Sarah plus maidservant? The third commandment about no likeness of any living thing? Or the fourth about not working on the Sabbath? King David and his multiple wives and 300 concubines (hilariously described in one child’s exam paper as ‘300 porcupines’. Jesus equating adultery with the lustful looks from all those married men we know only too well – including those ‘spending time with women’ at the office? There’s lots to choose from, whether you believe the Bible or you don't.
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An old guy, 20+ years older than me, hit on me repeatedly two years ago. He said he is 75, but I suspect he's older. We have never met in person - this was all by Zoom and work-related phone calls. His wife was in the same state as your friend's wife. I was unable to get out of a project we were both on, but it was hugely uncomfortable for me to politely turn down his frequent and sometimes explicit requests for intercourse(!!!) He enjoyed telling me he'd cheated on his wife many times in their life together. NOT like your friend at all!

I know that men who were the overlords of females in the 1950s-70s sometimes have no clue how unwelcome their advances are to women, especially women who are just trying to be professional, nice and polite.

Morally, I have no problem with their needs in his situation, although I do wonder if they'd be able to fulfill their fondly-recalled, likely mythical, physical prowess of younger days. I can imagine it's just a mask for wanting companionship, which is so incredibly sad. That's why I didn't go all #MeToo on the old gent who was so inappropriate with me.

You did NOT mention anything like this in your friend's behaviours, so perhaps he's not "that type", at least as far as you know. But if you are capable of gently encouraging him to just start by socializing with other men, and ladies his own age, and pointing out that this need not lead to...anything more...then maybe he could find comfort and not make someone else uncomfortable.
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