Caregiving for a Spouse With Alzheimer's Disease

This was written on March 18, 2013, 5 months before I was so emotionally, physically, and mentally drained of any vestige of the capability to care for myself or my loving husband another minute, that I made the heartbreaking decision to place him in a nursing home:

I have previously written how my new therapist told me that I needed to grieve the loss of the man I married. Although still living, Alzheimer’s Disease has robbed him of his previous personality and abilities. He is no longer the man I married and spent my life with. I knew that. It is what sent me to therapy in the first place – holding back the grief and tears to deal with the daily crises of being an Alzheimer Spouse caregiver was destroying my emotional health. I needed to stop holding everything in and let the tears flow.

However, the truth is that listening to a friend cry and complain every time you get on the phone with them gets old very fast. No one, including me, wants to hear crying all the time.

With that idea in my mind, I made a conscious decision to try to handle this grieving process by myself and with one friend who is going through the same thing.

For the last week and a half since I saw the therapist, I have been letting the memories and the tears come. In the midst of the tears, there are smiles as I recall so many of our adventures together.

I cry for the coldness on my back where a strong, warm hand used to caress me for no reason other than love. Then I smile at the memory of us and our new puppy covered in paint as we attempted a living room renovation.

I cry when I remember the “Us-ness” we felt as we frolicked in the backyard pool at midnight not caring about the neighbors. Then I smile at the memory of him building an extra step at the bottom of our deck stairs, so our elderly, arthritic dog could navigate the steps more easily.

I cry when I recall his relieved face, covered in tears of joy, as he sat at my hospital bed, upon hearing the news from the doctor that I was not going to die after all. Then I smile when I think about how his fear of heights got him stuck on our roof, trying to fix the satellite dish, and a neighbor had to get him down.

I cry when I think of always knowing I could depend on him to be my total support system in any crisis. He was always there for me to lean on. He is no longer “there” or anywhere but locked away in Alzheimer Hell. Then I smile when I remember him holding my hand underwater as we snorkeled in Aruba.

And so it goes. I cry at the loss of who he was and what he was to me, and I smile at the memories of our life together.

Is this how one grieves? I have no idea. I only know that it is what I am doing, and for me, for now, crying is better than trying to hold it back. How long will it go on? I have no idea. I also do not care. For now, it is helping me cope with the loss of the man who used to be my husband.

Are any of you grieving in this manner? Have any of you found other ways to cope as an “Alzheimer Midow”? No, “midow” is not a typo. It is how we describe ourselves. No longer a wife, not yet a widow. Midway between the two. A “midow”.

Update- December, 2021. He died 6 ½ years ago, 2 years after the nursing home placement. This story is as relevant to me today as it was in 2013. The grieving does not stop. A constant process of crying at the loss and smiling at the good memories. It’s how it is. It’s how it will always be.