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.
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.
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.
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.
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.
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.
Both of my hands are raised.