What Do You Miss The Most?

What Do You Miss The Most? By Lori La Bey

I attended an Alzheimer’s Support Group tonight. This is something I have not done for a long time. In fact, it’s been many years. I went with the intention to go hear a speaker I’ve heard great things about. It is interesting though how things work out. The speaker was ill and it was going to be a “normal” Alzheimer’s Support Group meeting. One where people introduce themselves, and why they are there… One where questions are posed and people comment if they are comfortable on how they are dealing with their feelings, their thoughts, their sanity… their life. Openly talking about the good, the bad, the ugly, and the comical; in a confidential manner. One where you feel safe knowing the group is full of respect for one another.

Little did I know how much tonight’s meeting was going to help me, an “Expert” in the field of Alzheimer’s disease. Not that I ever thought or felt there was no more for me to learn. Not that I ever felt 100% in control as a caregiver. Not that I ever felt above going to a support group. No, it was more I just didn’t feel the need to take the time. I felt I had a pretty good handle on things.

But truth be told, dealing with the emotions of the disease, the ebbs and flow of the ongoing changes, hits us all hard at times. Tonight’s meeting was God Sent to me. I had no idea of the blessing it would be to me. The outlet it would provide to me. The comfort it would give me.

You see, last night I went to visit my Mother at the nursing home. Mom is in her end stages of Alzheimer’s disease. At 6pm in the evening, dinner was over and Mother was in bed for the night. You might think that’s way too early and staff are just trying to get her out of the way, but I know better. Mom is tired. She sleeps a lot these days. She is happy to be in bed. This from a woman who when she first moved into the nursing home in 2001, stayed up to watch the Late Show with David Letterman. Boy, things have changed.

I just stood by her bedside and ran my fingers through her hair, touched her checks, and talked lovingly to her. I put on some of her favorite music, Tony Bennett, for her to fall asleep too. I love to watch her smile to the music and every now and then, hum to the songs. She gives me calmness, knowing she is peaceful. She is safe. She is happy.

So tonight at the support group the question was posed, “What do you miss the most?”

Immediately I knew what my answer was. I decided to speak up. “What I miss the most,” I squeaked out, as my eyes welled up with tears. “What I miss the most is my Mother’s hug. She doesn’t know how to hug any more. I miss her being able to tell me everything will be ok. I miss her not being able to console me, or just express her love towards me.”

You see, Mom just doesn’t know what a hug is. She can’t physically put her arms around me and hold me. Her mind can’t communicate with her body to give a hug.

I was surprised at my reaction to answering the question. I was surprised how many things have changed with my Mom. How much I have accepted these changes as normal behaviors now. Like the fact that she can’t do a simple little thing, like hug me.

It made me realize once again, how different everyone’s situation is. How every person reacts and progresses through the disease differently. It made me realize once again, just because my Mom can’t hug anymore doesn’t mean everyone with Alzheimer’s disease will lose their ability to give a hug.

I’ve decided to go back to the Support Group next month. I’ve decided it’s time for me again to have an outlet to process this disease with others in a safe environment, with my caregiver peers. I’ve decided it’s time to spread the word once again the value of Alzheimer’s Support Groups.

I also want to note that if I decide to post anything related to my experience from going to an Alzheimer’s Support Group, like this posting it be based on my thoughts, my comments and not those of others in the group as we have all agreed to keep things confidential. I will say however, many interesting things were shared. Great insight was given by many and if you chose to go I feel strongly you will walk away feeling better about dealing with the disease, then when you walked in.

If you are ready to take the step to go to an Alzheimer’s Support Group, contact the Alzheimer’s Association for a group in your area. Here is there link: