I’m with my wife 24/7, all day, every day, all the time. I never paid any attention to our relationship reality when her mind was healthy and I could see. Being together was a constant treat, always new adventures to share, things to do together.
And, we could talk, share ideas, questions, and breathe together in awe at a stunning sunset.
As much as we enjoyed each other, we were always organizing get-togethers with family and friends. We could drive, so making connections was easy. We were both functional, making shared meals with others a simple thing to do at our place.
For a short time, our life was a wonderful balance of precious times together and special moments with others.
Such times are past. Our range of life options has collapsed. My wife’s dementia and my blindness have shrunk our social activities significantly. We no longer drive, so getting out to visit folks beyond our walking radius doesn’t happens unless someone comes for us. This occurs less and less, as I suppose, for most, that socializing with a demented woman and a blind guy is, at best, awkward.
Fortunately, my wife enjoys video calls with our kids, which they are considerate enough to make often. But, as any sort of intellectual, rational conversation is no longer possible with my wife, I find myself craving social contact.
Even though we rarely meet anyone at our local coffeehouse, we visit regularly just so I can hear the drone of other human voices, be near conversations, get vicarious pleasure from being in the middle of people living regular lives.
Slowly, I’m socially starving.
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As a blind artist and author, with a husband who has survived acute myeloid leukemia for the past 5 years – a stem cell transplant that enabled him to go into remission – leaving him with significant memory loss and some days of confusion – I understand this post all too well. You are able to articulate your experiences so well. In the past 5 years, I’ve only left him for a weekend 3 times, so hat I could travel to KY where I was in an exhibition and attended the awards banquet. From a life of international travels, teaching in my college classrooms, and driving anywhere I desired – life is a crash course in patience. We pivot with the changes.
Thank you for sharing your story and kind thoughts. Ours is a solitary journey but it is helpful to know others are traveling in the same direction.
Tio. I understand and I am so sorry for your situation. It must be so very difficult to feel starvation in this way. What subjects did you enjoy most in conversation with others? Books? Politics? TV shows/movies? Philosophy? Science?
And, yes. We do pivot with the changes. What is the saying? Adapt or die (that saying is about how critters survive harsh winters in Yellowstone). You are adapting well–better than most. But my heart goes out to you.
Your kind and gracious thoughts are much appreciated.
Man it’s tough! There is no conversation to be had with a mind that’s going or gone. I visited my husband today and he kept asking me where I was from and why I decided to come. I kept answering but the sadness of who he used to be wore on me. It was a visit of under an hour. He used to be an attorney. Now at his assisted living he takes clothes out of other people’s rooms to wear. Sad.
I certainly appreciate the challenges you face on a daily basis. I have nothing but admiration for the compassion and commitment of caregivers sharing similar challenges.