Autobiography, Human Interest News, In the News, People Health

Caregiver Relationships Are Sacred: In Defense of B. Smith’s Husband

A caregiver seeking out a new relationship while their ill significant other is still alive is not about the sex.  It is about validating that they are a human being.

Since my husband’s devastating diagnosis of early onset (mid 50’s) Lewy Body Dementia (huh?) just before Christmas, 2015, I, too, would have judged Mr. B. Smith/Dan Gasby for having a new girlfriend–and bringing her into the family home to live–while his wife is dying from early-onset Alzheimer’s.  Not any more.

First of all, early onset means that not only is the person 20-40 years younger than those normally affected but it also can mean that it is fast-progressing and manifesting in unimaginable ways.  I know in the case of my husband, who will be called “Someone” hereafter in this blog, I struggle daily, sometimes hourly, to retain my own sanity, my own dignity, my own grasp of reality when dealing with the episodes when this disease rears its bizarre and ugly “head.” (Lewy Body is not a steady decline like some of the other dementias–it is erratic and bizarre and the person that was actually comes “back” for a few hours a day here and there–until the end.)

I am sure Mr. Gasby struggled to take care of things for a long time by himself.  He and Ms. Smith could have even had private conversations about his being able to move on when she either passes or gets to the point where her normal consciousness has left.  We don’t know what their personal arrangement is nor can we judge.  These situations are all different and all so very, very difficult on the caregiver especially, who is usually the spouse or significant other.

The decision to take on a partner is not about the sex.  Believe me, it is the last or next to last thing on your mind.  I am sure, being in the thick of it now, that it is about having someone to come home to, or to be at home with, who asks how your day is going, or to admire the beautiful day with or the stars or the yummy dinner you just made.  It is almost impossible to be a whole human being without anyone to give you a hug, a kiss, even just a simple “hello” or a smile.

My Someone doesn’t even remember my name anymore and decided a few months ago that there is no sense in responding to my talking.  Sure, he can hear me but he made decision to not respond. “Why bother?” he told his doctor. When I ask things like “Honey, would you like butter on your potato?” or “Sweetie, would you like to come and watch a movie with me and I’ll make some warm popcorn,” there is “crickets” for a response as he shuffles around the house, going from task to task to task, each never started and never finished but the messes are all left strewn behind.

The Someone’s who are afflicted with these neurologic illnesses become gradually like blank slates.  The person we loved and knew is being erased or is fading into oblivion.  With thirty or forty years left of my own life, I know there will be a future (after a few years to just recover from this experience). I don’t want to complicate things now by bringing in another love.  Quite frankly, I don’t even have a minute to go find one!

That said, someone else’s way to survive this maybe be the way B. Smith’s husband is choosing.  The primary benefits–and it is not sex!–is that he gets companionship from the new person, which can make him a better, refreshed, vibrant caretaker of his wife instead of what eventually becomes a depleted, exhausted, frustrated shell of a caretaker–and B. Smith gets another caring person to take care of her, her home and her precious husband.

Before you judge, please walk a mile in someone’s shoes.  I have walked half way around the world, or so it feels, and know what this feels like, what the needs are, and have learned not to judge any caregiver’s way of both dealing with the situation emotionally nor how they get through their days–as long as the afflicted person is taken care of in love and in honor.

Afterthought…You know what I miss alot?  Someone saying, “God bless you,” when I sneeze.  It kind of feels like you just don’t matter any more when that is no longer said but rationally, I know it is just a byproduct of LBD.

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I hope you come back regularly.  Between dealing with Lewy Body Dementia (a post for another time–but in a nutshell it is dementia, Alzheimer’s, Parkinson’s, Bipolar, Depression and a bunch of others all rolled into one) and a small ranch of special needs dogs, some in wheelchairs, some with other disabilities (I will share their stories here, too), please click on the menu above this blog and give regularly when you can.

If you don’t have time to do all of that, please go to this link and leave a gift: https://www.gofundme.com/gofundmecomicantbreatheblogfeb2019  It will help me keep this ship afloat. I choose to spend this precious time with my special Someone–and I can’t leave to go to work nevermind relax or sometimes even sleep.    God knows, I don’t wish any of this on anyone so please understand that we, caregivers, all need to do what we need to do to just keep breathing sometimes.  It is that hard.

Thank you.

 

 

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