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.