To Fred – you are not alone!
As I wrote these words into the cover page of my book last night, and then signed it, my heart was so full. Fred, an older gentleman, was standing by my car in the dark with me while I gifted him one of my books. He was so endearing that my heart shattered in that moment, when I watched him walk away, head down, without his wife, who stayed behind in that care home where I had just spent an hour and a half telling my story and talking to the spouses and sons and daughters of loved ones with Alzheimer’s/Dementia.
This was the second time I had the privilege of attending a support group for carers of Alzheimer’s and Dementia patients. Both times were heart-rending, and emotional, and just so full of care and love towards one another. People teared up, some cried openly, a box of tissues was handed around.
But I have to tell you about the men.
In every single one of these men I saw my Dad. Most were the husbands of wives who were at the facility, one gentleman was with his wife, whose Mom was a resident there. I stood there and told my story, as best I could, while fully admitting that I am a writer, not a speaker, and I watched their faces. I told them about the early diagnosis, the early caregiving that I faced on my own, the hospital woes of my Dad, the realization that a care home was the next step, the sting of the COVID epidemic and how we were shut out from seeing my Mom, and her from seeing us. I told about the falls, the hospital stays with no one to advocate for someone who could not speak for herself. I told about finding Just Like Home, and the difference it made, and how I could “just be the daughter again.” They were all with me, nodding their heads and empathizing.
And I told about my Dad’s heartbreak, his struggle with the physical ailments, but also with the fact that he blamed himself, how he could not “fix this” for my Mom. I told about how he died – suddenly – and how that grief tore me up. I talked about the anger, the sadness, the resentment, the loneliness, the fear and the way I just wanted to help others not feel so alone, and that is the reason my blog posts turned into a book.
As I watched these men a thousand emotions and thoughts flitted across their faces. I saw the pain in their eyes while I talked. I saw men who were raw and hurting. And I saw a community of love surrounding them. I had said that, in my writing, I wanted to help validate the feelings of people going through this devastating disease.
These men (and women) validated me. They were me and I was them. And I saw what a support group could have done for us. There was the lady that was resentful, so angry that she was the one doing the caring and the children would not step up. She told how she goes to the firing range once a week and shoots her beretta, or her Glock, and how sometimes she imagines faces on the targets. Another lady, a daughter, through tears managed to say “it’s not the SAME, she’s not the same, her face is different, her expressions are different, her eyes are different.” And for a moment I was her, sitting endlessly with my Mom while the entire essence of her being changed. I wanted to say to this women, “hold on to her hands. Memorize them, feel them. Close your eyes and feel the warmth coming from them. These hands once held you. These hands will NOT change, they are the same. And long after she’s gone, you will still be able to feel her hand in yours and know that she’s still with you.” I didn’t get the chance to tell her, but maybe she will read this and know that I am right there with her, and that I understand.
We talked about self care. Larry, and George* and the others talked about guilt. Why were they still able to do things their wives no longer could? How can I leave her, they said. How can I be happy, or even just have happy moments, when she is not with me? “I always assumed I’d go before her,” Mark* said as his eyes welled up. And Fred choked up, couldn’t even get the word out. Of all of them, Fred touched me the deepest. The pain in his eyes was unbearable. The stoic set of his shoulders, the way the love for his wife and his deep hurt emanated off him. The mustache, like my Dad’s, quivered as he tried to talk. His hunched shoulders as he walked with me to the car afterwards. “What is your wife’s name?” I asked. “Gloria,” he said. I answered “that is a beautiful name.” And I told him that as hard as it is, he had to try and take care of himself, because he couldn’t be his best self for Gloria if he didn’t. And she deserves his best. She’ll need his best.
As the night ended my jaw hurt from trying not to cry. My tears almost spilled over as these lovely people told their stories. Every man there cried at least once. And I thought, how lucky you all are! And I told them, “This is amazing, this is beautiful, and you are all so lucky to have each other. I wish my Dad had had this.” And I do. But I also know he would not have attended. These men were brave, so brave, to come and be so honest and open. One dashing gentleman said he comes every day, he loves to talk to everyone, he loves to help out around the place. The son-in-law acknowledged that this wasn’t the plan at all, he and his wife were supposed to be traveling, going on cruises, having a wonderful time in retirement. But that God called them to be here, and here is where they would be. All the others nodded in agreement. This was not the plan, this was never how it was supposed to be.
I know that none of them would chose this ending for their wives and husbands, moms and dads. But they have all found a place of caring, compassion and healing. They are blessed, and they are not alone.
I have never been so humbled.
*names have been changed! Except for Fred. And Gloria.
