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.
Both of my hands are raised.
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.
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.
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.
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.
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.
A relationship involves two people. The disease affects both partners but in different ways.
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.
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.
Continue to be the supporting friend, with no judgements.
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.
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.
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
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.
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.