Progress Does Not Mean Improvement

Before my mother got ill, the word progress had positive connotations with me. When I get my children’s progress report from school, its to show me how far they have come or where they need to go. When my son has progressed in his soccer skills, it refers to him getting better. Progress or progression in Alzheimer’s and FTD do not provide comfort to the patient or those around them. It has almost the opposite effect.

My Moms disease has progressed slowly and intermittently over the years.It was so slow in the beginning, that we did not even realize she wasn’t well. Since January, we have seen a steady progression in my Mom and the disease. Words are harder to find, she has had a few (far between) tolieting accidents, her personal hygiene is starting to wane. I try not to look at it as a day by day, but rather week to week. By doing so, I can judge a greater amount of time to see if there has been a difference. We keep hoping for a plateau. A place for my Mom to sit for a while, before more things go. In six months, we have not had one plateau. To say it’s disappointing would be an understatement.

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The Bell’s (Palsy) has Rung

Last week, a strange feeling started coming over my face. Slowly the left side of my face starting from my chin up started to get numb. By the time the early evening hit, I was numb from my eyebrow down and I was scared.  Fearing a stroke (yet all day finding every excuse possible) I called  my doctor and headed to the hospital.

When I arrived, I was treated like royalty.  I have never gotten into an emergency room so quickly! I guess the fear of a woman having a stroke and malpractice can make things happen fast. So after seeing several doctors, performing many simple tests (close your eyes, smile and CAT scan etc…) it was determined that I have Bell’s Palsy. I am fortunate that it is not a stroke. I am disappointed that I have Bell’s Palsy.

Since my symptoms started while I was awake, they were mild. Sunday it was worse, however most people could not tell unless I smiled. Monday was worse, Tuesday worse, Wednesday worse.  My left side of my face is in its normal place, as the right side of my face is drooping. There is a good inch difference in my eyebrows. Eating is difficult, my jaw hurts, my ear hurts, I drool. The medicine I am on is giving me crappy side effects. Quite frankly, it sucks.

So each day I look in the mirror and try to convince myself that things are better, or at the very least not worse. Then I go out, try and talk (out the side of my mouth) only to see sadness reflected back to me by the whom I am trying to converse with. I want to explain to them, its OK!!!! My family is awesome through this. On Thanksgiving, I got them all to take a family photo emulating my face. Its hysterical. My friends, have been quick with the jokes such as “why the long face?” These little bright lights, the ability to laugh its what makes it easier. So this bump in the road is again teaching me lessons of compassion, and laughter.

Dementia Related Symptoms

Here are some dementia related symptoms:

stress

illness due to stress (such as shingles)

high blood pressure

hair loss

weight gain/loss

sadness

grief

These above symptoms/illnesses are not just things the person with dementia experiences, but what the caregiver experiences.  In the past year, I have experienced every single one of them. FTD has not only effected my mothers body, it is effecting mine too.

Fortunately, I caught the shingles early and with proper medication it cleared up quickly. I had the residual pain for over six months, but I could deal with it. The high blood pressure was initially controlled with medication. Within six months I worked on other ways to deal with stress (such as exercising) and I am now medication free. The more active lifestyle has helped with the hair loss and weight gain. Sadness and grief are hard ones to get away from. Most of these feeling stems from missing my mother, the women she used to be.

I believe that the caregiver gets lost and forgotten when dealing with an ill person. It doesn’t really matter what the disease is, the caregiver is the one trying to keep things in line and take care of the ill patient. Often neglecting themselves in the process. I have fallen into this pattern and most do since if there is not consistent reliable help. So as I manage and take care of my Mom’s symptoms, I have to remember myself and take care of me.