Genie Mitchell, caregiver, posted this after losing her mother to Alzheimer’s Disease.
My mother, my sweet mom, died today.
Ever since we moved in together eight years ago, I knew – and dreaded – that I would be the one to find her dead, and this morning it happened. Yet I was still shocked; I had had no clue that this would be the day, or that she was so close to death, even thirteen years after her initial Alzheimer’s diagnosis.
She had a lovely day yesterday, went to a barbecue with her caregiver’s family, came home and got to bed late, with lots of snuggles and hugs and kisses as she fell to sleep. Then, as she often did after an initial short sleep, she talked and babbled and laughed for more than an hour from the darkness of her bedroom, seemingly having a grand ol’ time with her own figments of thought.
But when I went to wake her this morning, she didn’t move or respond to my singing “Good Mornin’” (a la Debbie Reynolds in “Singin’ in the Rain), and I thought she had suffocated among her piles of down pillows. I share the experience of what happened next just so that you may add it to your knowledge base in case a similar day comes for you:
I called 911 – my mother did NOT have a do-not-resuscitate order, as we still did not want to foreclose any option and wanted to play such decisions by ear. The 911 operator had me pull Mom down to lie flat on her back on the floor, check her airway and then perform chest compression, as he coached me by phone until the fire department arrived.
I’m glad I did the chest compression as it gave me a few moments of hope that she was still alive, plus something “helpful” to do until they arrived (instead of just being uselessly frantic). Alas, the firemen pronounced her dead within only a few minutes of their arrival. They contacted the coroner and determined that Mom’s death was from natural causes, not from the suffocation that I had, with a horrible feeling of impending guilt, feared.
The fireman took some pains to explain to me and convince me that Mom would have shown other signs of suffocation if that’s what had happened, and that, contrary to what happens in movies, it’s actually rather hard to suffocate from pillows, as air can get through.
I am grateful for his attention to this point, as my fear of the possibility of suffocation, and my distress in my role in
propping her up with all those pillows, continue to play in my head; I now have the fireman’s “tape” to play in counterpoint.
After I notified my brothers, I contacted a mortuary, which very kindly told me I could call back when I was ready for them to “take her into their care” (translation: “come pick up her body.”} And so, amazingly enough, as it was nothing I could ever have planned, I ended up keeping her here at home all day. Her caregiver, a friend and I cleaned her up and put her back up on the bed, and it was actually a comfort to me to check her every so often and realize that she was still dead.
Oh, of course, I wanted her to open her eyes and to breathe! But somehow, having her body here helped me adjust to the new reality. And, isn’t that, after all, what we as caregivers do – adjust to each new reality that comes along?
I did have them come this evening, just after dark, with the caregiver and two friends in attendance. The mortuary people were very respectful of our need to spend many tearful last moments with her. And it was perfect timing for a quiet send-off of its kind, without any kind of spectacle as would have been during the hubbub of the daytime.
So, tonight, here I am, alone in this house that we rented, my mother and I, expressly for the purpose of my caring for her as she lived through her Alzheimer’s decline. So many times, I have wanted to be alone, to be able to come and go when I wanted, and every time I have known that to wish for that was to wish for my mother’s death. And now it has happened. I am about to have my life back … but I have lost my Mom in the process.
Nevertheless, the best gift I have given myself is the knowledge that I have done everything I could to make these last years of this devastating disease as pleasant and happy as they could have been for the sweet, loving, gentle soul who I am glad and proud to say was my mother. Oh, how I miss her, but I will always have her with me.
I am doing what I can to grieve in the lovely way that both Mom and I deserve.
( Genie’s poetry can be found in Breaking the Silence: A Caregiver’s Voice)