I have been blessed beyond measure with having my Mom for 92 years so far and up to a few months ago she has been sharp as a tack for the most part. Mom’s take on things is that she has only lost maybe one marble! When my nephew heard that Grandma said she had lost one marble and he just happened to find one on a hike outdoors, he had to make sure he brought it to her the next time he came to visit in case it was the one she lost. Despite her ailing physical health her mind continued to serve her well and we enjoyed many a good talk. I have treasured the fact that I have my Mom to talk to but something tells me this may not be the case for much longer.
When Mom lived with me for 5 years, I looked after every part of her life. I knew her inside out, upside down and backwards. Because I believe strongly she has autism like me, I often had to intervene with doctors and other medical personnel on many issues like the increased sensitivity to medications and their side effects. Like me she often needed much less of a dose of a medication for it to be effective. She reacted with rare side effects, she could not explain to the doctors where the pain was, or whether there was even pain, or accurately describe what was going on in her body. Her default statement was often, ” I just don’t feel good”. This is where I often had to jump in to clarify as best I could what was happening with my Mom.
When Mom moved to the nursing home, I visited her for at least 2 hours almost every day, and if she was sick I would try to stay with her all day. I kept telling myself, ” noone knows Mom like me. She needs me to watch out for her” And that is what I did until Covid 19 so rudely intruded into our lives.
When Covid 19 hit in March of this year, the nursing home shut up tighter than a safe in a bank. No access was the new norm. Thank goodness Mom and I had telephones and could still talk to each other. But no more was I there every day to check on Mom and see the subtle changes that happen as you grow older. I suddenly had to trust her to other people, people for the most part who were strangers. This has been excruciatingly difficult for me and for her. We had never been more than a few days apart in over 10 years. My autistic brain did not compute this major change very well at all. My stress levels were at their max. On top of this I was dealing with the diagnosis of cancer of the uterus and all that would entail during Covid 19 pandemic where everything is shut tight including treatments for cancer.
As the weeks passed, Mom and I got into a bit of a rhythm of calling back and forth. I was able to have my surgery and then start on radiation treatments. It looked like this might be our new norm for a long time.
Then lately some things have been happening that have gotten my antennae up. Things began changing with Mom. First she got pneumonia and was very sick but she was a trooper and came through it. I, on the other hand, was desperate that I could not be there to comfort her, sit with her and advocate for her. I felt helpless and scared. After this, she suddenly was much weaker than she had ever been. She slept alot she said. She didn’t want to eat. She couldn’t hold the phone to her ear for very long before she was too tired. Some days she was feeling so bad she did not want to talk at all. Then one morning she sheepishly told me that she had waited and waited for her breakfast only to realize later that she had already had it. This raised alarm bells in my head. This was not like Mom to forget like that. Then last week she couldn’t remember on two nights if the nurse had been in to give her her night meds. Again alarm bells went off. Mom said to me apologetically that she was just not the same. She would say to me, ” I am afraid your mother is losing her mind”
I told these incidents to a friend who questioned why I was so upset. She knew that Mom wanted to go to heaven and that I was ready to let her go. Why then would I be upset about her getting worse? Wouldn’t that have to happen for her to die? I suppose so, I thought. But that is not the way I wanted it to happen. I wanted a quick exit – stage left. A massive heart attack in the night or a stroke which would take her in an instant. This is the way I imagined it. Losing her little by little, piece by piece was not the way I wanted things to go. Every new incident was like an electric jolt on my brain. A new change that I had to get used to. And I am confident that Mom felt the same way. She felt the changes and I saw them happening. And neither of us could do anything about them. And I could not be with her to ease the fall. She was falling headfirst on her own. I could only watch and wince.
My autism is not dealing with this well. Each new incident puts me into a tizzy and I frantically want to reach out and grab my Mom but Covid 19 blocks the way to her. I am losing her bit by bit and can only watch from a distance. I want to hug her and give her a kiss. Oh if I could only hug her maybe I could stop her from disintigrating. I could hold her together and never let go.
Yesterday, I was telling Mom about my brother’s upcoming birthday. She asked me quite nonchalantly what was Ian’s birthdate. She had forgotten. I guess a 92 year old can forget her son’s birthday. At least she doesn’t have Alzheimer’s. I still have pieces of my Mom left Then just a little while ago I got a call from her out of the blue. We had a little chat and then she thanked me for calling her. She said she loved when I called her to chat. Alarm bells. Electric jolt. I am ruminating on her words and whether this is another sign of her falling. I watch her falling over and over in my mind. I can’t get to her in time. I am blocked from reaching her. Tears streak my face as I anticipate there will be many more of these electric jolts to contend with. To face head on. To incorporate into a new normal. Fear grips me as I struggle with the future to come.
Oh dear Lord, I need a cup of tea badly. Something stable, and comfortable and comforting. Yes, tea. And you Lord, will see me through. You are with her when I can”t be. You will soften her fall and you will keep me from falling into despair. You are our Rock and our High Tower. You will hide us in the shadow of your wings. You will never leave us alone.