Dementia is insidious. Obviously, it is detrimental to the patient but it also affects all who care about that person. My mother was diagnosed with dementia a few years ago. Mom said that it would be better to have terminal cancer than Alzheimer’s and sadly, I must agree. She was angry about the prognosis because the medical researchers know very little about the cause, cure or even how to slow down the decline of mental capabilities. Dad became resentful because she was his servant for fifty years and now he has to take care of her.
It has been awful watching her personality disappear. The sparkle in her eyes only appears on occasion and the silences are increasing. She retains a little information but repeats the same question over and over again. I urged my father to place a chalkboard in the living room, where they spend the majority of their time, with the answers to most of her frequent questions. He had to procure a larger board because the questions have increased beyond the day of the week and date on the calendar. I’m sure it is annoying to endure the questions every day.
Sibling Number Two is a Licensed Practical Nurse and has worked at several nursing homes. She has taken charge of our parent’s care. She also lives nearby and has a couple kids who can help her on occasion. I acquiesce because she has professional expertise that I lack. However, they have ignored my suggestions to enroll Mom in dementia medical trials at the nearby Mayo Clinic. Mayo is one of the top medical institutions in the world and has a top-notch research wing. It is wrong not to take advantage of that resource.
During a recent trip home my Dad went to run errands and I stayed with Mom. We had just eaten breakfast and she wanted to go back to bed. Silly me, I should have gone along with her wish but I encouraged her to walk around a bit. She has always liked to sleep nine hours per night but now sleeps for twelve hours and naps a lot during the day. She walked about ten feet into the kitchen and started to get wobbly. I pulled up a chair and she sat down. She became limp and listed over. I managed to catch her and in about a minute she regained consciousness but was too woozy to stand. I pulled up a chair and sat with her.
My Dad had told me about her shaky spells so I didn’t call 911. They have been happening for nearly a year. This was my first personal experience with the condition. She is able to hear but loses all muscle tone and collapses. The episode tends to last a minute or two and then she is fine. Unfortunately, this was not the case. She would be chatting and then become limp over and over again. Sometimes, her leg would shake or she could slightly move her arm but she wasn’t able to control her body. She’d wake up enough to state, “This is the pits.” I wanted to have her lie down on the kitchen floor but she refused. I knew that I did not have the strength to carry her to the bedroom especially since I still am in pain from the whiplash.
Dad returned home about ten minutes after the attack began. He wanted to move her to the bedroom because she always got better after sleeping. We transferred her to sit in a walker with wheels (they don’t have a wheelchair) and moved her down the hallway. We got into the bedroom and were about to convey her to the bed when she went limp and slid out of the chair. I caught her so she didn’t fall down hard. A hard fall could result in broken bones or a concussion.
Dad called my sister who had worked the night shift and was sleeping. She came over and Mom was able to get up off the floor. They slowly moved her out to my sister’s car and to the hospital. I drove separately. I needed to because I began to cry. When Mom was lying on the floor I knew what she would look like in her casket. She has always been supportive of me. Once she dies, my connection to the family ends.
It was a quiet morning at the Emergency Room. The Medical Technician took blood and urine samples. Mom’s blood pressure and oxygen levels were monitored. Her blood pressure dropped when she sat and especially when she stood and her oxygen was down a bit. A saline solution intravenous drip was attached and oxygen administered through a nose tube. She had previously worn a heart monitor for a few days but it showed no abnormalities. Thankfully, Mom wasn’t upset but she did seem a bit confused. As long as Dad and my sister were there, she was calm. My neck began to spasm, probably due to the stress.
Eventually, the Doctor came in to make an evaluation. A Medical Scribe accompanied her. He typed away as she spoke with my Mom, sister and Dad. My sister had told me to “shut up” earlier so I remained silent. The tests showed that Mom was a bit dehydrated but there was no other obvious cause for the Limp episodes. After four hours, we took her home and she couldn’t remember that she was at the hospital. The next day she was back to normal.
It is frustrating to be so helpless. I remember a verse from Bonnie Raitt’s Nick of Time song,
“I see my folks, they're getting old, I watch their bodies change...
I know they see the same in me, And it makes us both feel strange...
No matter how you tell yourself, It's what we all go through...
Those eyes are pretty hard to take when they're staring' back at you.”
Aging is a natural process but it is still excruciating to experience. My Mom is enduring a double death, first with dementia erasing her personality and then it could take years before her body dies.
Sibling Number One began her campaign of hatred against me thirty years ago and has managed to infect the rest of the family with her lies. I am already estranged and feel very vulnerable in their presence. I want Mom to be happy but they have never treated her well. My sisters aren’t nice to her. Our Dad has belittled and bullied her for as long as I can remember. He may suffer from self-inflicted homophobia but he doesn’t have the right to be mean to Mom. She should have divorced him years ago. He is taking care of her now but begrudgingly. I would not be surprised if they moved her into a nursing home soon. Due to the Limp episodes, I would agree but I think that her mental status will suffer as a result. She likes to be at home.
Mom’s older sister also has dementia so the illness may be genetic. My physiology is closer to my mother than my father so I fear that I may inherit this horrible condition. There is no way to avoid the illness, no cure nothing nada zip zero just total abject hopelessness. I don’t have children and my friendly nieces and nephew (kids of Sibling Number Three) live far away. I have very little saved for retirement and will probably end up at the county poor house. I’d rather commit suicide than experience a slow lonely death in an institution.
Missing my Mama
© 2013 Ima B. Musing
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