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.
Here are some dementia related symptoms:
illness due to stress (such as shingles)
high blood pressure
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.
I had an interesting dream the other night. I was riding a bike with my Mom on the back of the bike. We were coming down and hill and when I went to apply the brakes, I realized they weren’t working. We were heading towards and intersection so I put my feet on the ground, dragging them trying to slow down. I told my Mom to hold on, we were going to have to tip the bike to avoid the intersection. The bike was tipped and my Mom was screaming at me asking me how I could do that to her. Then (still in my dream), my husband rode over and asked if all was ok. I told him what happened and when we looked at the bike, we realized the brake line had been disconnected. Then my mother chimed in stating that she had disconnected them.
No dream crazy dream interpretation needed. This is how my life is. Me dragging my feet trying to slow down what is happening. My mother constantly sabotaging her treatment and care. Her yelling, me bringing her along. Tipping which ever way we need to so we can understand and get things done. The helplessness we both feel. The control we both crave for. When I told my husband Graham of my dream he laughed. Not much of a dream if its what happens in everyday life!
My mother was a very funny lady. She had a sarcastic, dry sense of humor. Growing up my mother was a bit of a yeller, but she was also quick to make a joke out of potentially sticky situation. If we were misbehaving, she would threaten to get out the paddle. Now that paddle was a big joke. It was tucked in the back of her closet with cobwebs on it. When she did take it out, it had silly pictures on it with an upbeat ridiculous poem. She would look at it, we would look at it and we would all laugh. She never used the paddle for punishment, it never touched our bodies. My Mom used the paddle as a tool to change our behavior, which it did. It changed us into giggling, behaving children. The paddle worked.
Many times I have used different “paddles” or tools to change my children’s behavior. When they were really young if they were yelling or having a tantrum, I would whisper as quietly as I could in their ear. They would have to stop what they were doing just to hear me. Another tool I used was for the runaway child, the one that would escape you in the supermarket or mall. I would shout out a different name. So when my son Colin was running towards the candy aisle at full speed, I simply would say “Robert, get back here!” He would stop dead in his tracks, and say, “My name is not Robert!” I would then call him a few different names as he worked his way back to me. The only downside of that was when people would be very curious if I was ‘actually’ his mother. lol
Now with Mom, my son has found a tool that can usually change a bad mood of hers. That tool is chocolate. Who doesn’t love chocolate? He found that one day, while she was in a particularly bad mood, he offered her a piece of fudge. That was a total game changer! Now from time to time, if we see she is starting to get upset or agitated over something, we offer her food (usually something chocolate). It’s a small amount, but boy does it make her happy.