As a caregiver, I constantly see the same thing. Intolerance. Not on my part but between the family. The younger generation loses patience quicker, finds the burden to be more than they want to bare but have no choice because of responsibility towards family. The one being cared for retreats into an emotional pit of need. Knowing that they bother people but not being able to control themselves because they need to have their family members close to make them feel better. One side wishing they weren’t needed and the other side wishing they didn’t need any help. Emotions run hot. Frustration is the number one emotion. Even if they are known for their endless patience, there is something about disability that causes both sides to suffer mentally. I believe that only the caregiver can make the difference especially when dealing with dementia. As the younger generation, as a daughter, a son, a family member, we must remember that the older generations mindset and life revolves around us. They lived for us, they worked to provide for us, they suffered for us, we are primary in their lives, even if they are secondary in ours. We were made to deal with the pain of losing the older generation first so let’s make their last moments worthy of their hard work. You can not make up for anything after they are gone. Do not live with the regret because you lost your temper. Kindness goes a long way. Love them, disability and all.
I know something that no one else knows. She spoke to me so nonchalantly that I barely had time to process it.
The day before: She refused to get up or even move. Hours in the same position. Her eyes would open but I would speak and she would close them again. I shook her lightly trying to get her up. She needs to eat, she needs to take her medicine, she needs to get up but she won’t. She won’t respond. She won’t react. She lays there. I worry. I have to leave. I try again and again to get her up to no avail. I tell her daughter what is happening. She says she will try when she gets home. She didn’t eat anything. She did not get out of bed.
The day she told me: She told me that when she woke up that she was surprised to still be alive. She felt like it was her time to die. She felt her soul being called away. She didn’t think she would ever wake up again. But she did. She woke up and she had a good day but today is another day and we may not be so lucky.
This is the life of a caregiver for a woman with dementia. A disease that destroys a person’s mind and soul and breaks them down.
I watched her grab a nail file and rub it on her face, her efforts to remove a mark on her face that was bothering her because she was constantly picking at it. (She wasn’t in harms way, I had a very close eye on her) She also brushed her face in attempts to groom herself in some manner which I did not understand. She searched and searched and opened drawers and just looked at everything and searched for something. I finally asked her what she needed. It was a toothbrush, a toothbrush that was directly in front of her. I gave it to her and she went to work again, brushing her teeth. She started again with the searching. She found a tube of lipstick but decided it wasn’t for her. She found lip gloss and applied it to her lips. Not once did she ask for help. Her mind no longer understands what a quarter sleeve is which she proves by anxiously pulling at her sleeves in an attempt to elongate them. Her confusion is constant, when I watch her I do not understand and I realize neither does she. Her world is deteriorating every day.
All I can do is watch. I try not to hover. She does not deserve to be limited by my worries. She deserves a chance to try her hand at tasks. I help her after she has a chance to try. I cry with her, I cry for her. I feel her pain but I can not help. I can only stand to the side and watch her take this journey. A journey that does not end with life but with death. Her mind will leave and so will she.
Dementia destroys something I can not heal. I am only a caregiver.