Sunday, May 21, 2017

Permission to live with Jesus and Further decline

As I walk into the Memory Care Unit where my husband Gary lives, I never know what to expect.  Today, he was sitting in the living room with his wheelchair buddy Nancy.  She was holding a doll with the care a mother gives her newborn.  Instinct is amazing.

Gary was sitting next to her with eyes wide but no recognition of what was happening around him.  The Unit Manager greeted me and we discussed some of my personal medical issues and then the subject turned to Gary.  She does not read this blog so I told her about the visit to the Funeral Home.  We talked about a potential roommate that might be living with Gary soon.  She gave me a bag of clothes to take home that don't fit Gary with his diapers.  I also decided to gather his bongos and an unused water bottle. Those items are no longer used due to his decline.

I sat with him and held his hand and arm for quite some time.  He was constantly whispering but I could decipher nothing.  When I looked in his eyes, he stopped whispering and stared at me.  No emotion, no hint of cognitive activity.  He would bat his eyes once in a while.  I touched his arm and told him that I know he hates living the way he is and that if he wants to go live with Jesus it would be okay with me.  There, I said it.  I told him I would be alright and that I would miss him.  I said, "You can stay as long as you like (choked up) but I will understand if you leave." 

I don't recall other than my wedding vows, speaking more important words.

After sitting quietly for a few moments, I trimmed his moustache and beard and left. 

I ran some errands and came home.  The kids were watching "Ghostbusters" so I watched for a while until a good friend called.  We chatted about random things and today, he did not ask about Gary.  Everyone assumes status quo.

Later in the evening, after a drink or two, the phone rang.  Caller ID displayed "SUNRISE".  Oh hell.....that always puts a lump in my throat.  The Unit Manager promptly started with "there is nothing wrong."  That is always comforting.  However, what they really mean is that there is no current, immediate life and death situation despite the fact that your loved one has a terminal illness.

She proceeded to tell me that they are taking Gary to a new level or personal care since he can no longer assist in transferring himself.  Despite being in a wheelchair, he has been able to stand for short periods of time to assist in moving to the wheelchair, shower, etc.  He can no longer do this so they will use a lift from now on.  Otherwise, it takes three caregivers to move him. 

Further decline.  I thanked her, hung up the phone and became overwhelmed with tears.  I cried for hours.  Sobbed, heaved and cried.  Sobbed.  Then, as quickly as it started, it stopped and I slept.  I hint of the future.

Today, I am going to church and to our University's annual Commencement Ceremony.  Some normalcy seems really good right now.


  1. So honest and real. Not there yet with my husband with FTD but went through something similar when our 30 year old son drew near the end of his battle with brain cancer. Thank you for writing.

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  2. Very touching. It is so difficult for people to understand what FTD does to not only the one who has it but also to those living it with them. Hugs and prayers...

  3. Hi Ada:

    I've been a reader of this blog for quite a while. I've been able to align a lot of my struggles with yours. My grandma had her own struggles with dementia, and it gave me solace to know that I could connect and talk with those who understood.

    Tonight, my grandma crossed the finish line. I hold in my heart of hearts that she no long is stuck in a body that is failing her. She is at peace, and that gives me peace.

    I say all of this to say thank you for sharing your journey. It's helped a 28-year old through the toughest of times in my life. I know I have more ahead, but your sharing has helped me so much, and I cannot thank you enough for that.