Feelings from beginning to end UPDATED
Feelings run hot and cold with the caretakers of a person with dementia. Sometimes feelings run high enough to feel like leaving and not coming back. This is true once the dementia patient cannot be left alone. At times, the caretaker truly feels weighed down even with loved ones. This is a two-person journey from beginning to end. Since this a person we love, that weighed down feeling passes quickly. What I’ve seen in Bill’s is the sadness of losing each skill, each thought, each piece of him to oblivion. I’m not morose, or a negative person, but this is a sad condition of the mind.
I’ve been with Alzheimer’s people and Dementia so much these past 20 years or so that I forget what really is happening to the person. When you are with a person with such a condition, perhaps every day, you don’t see the gradual change. Others do see the gradual decline.
To those who don’t have to care for a dementia patient you are fortunate; the feelings the caretakers feel may they never have to. It’s the suddenness of the drop in abilities that stands out to the caretakers because we don’t see the gradual. Again, you look at your loved one and realize this seems like he has suddenly gone downhill again. To me it feels as if it has been sudden that his thoughts and speech won’t come together, if at all. I remember the thoughts of his heart wanting to come out, but they were stuck. The thoughts were there, the memories are there, but the words are not.
Each word and thought that can’t get out is like a knife digging into me and every word that comes out wrong is as painful as that knife in me. He struggles to get the thoughts out and it hurts me to the point of my heart breaking in two.
As he tries to form the words or remember his thought, the look of desire in his eyes I know that he has something important to say to me. The unwillingness of his mouth to form the words that have already gone into oblivion and as the thought itself enter the doors of extinction, we look at each other helplessly.
I can only hug him and tell him that I love him. This is not his fault. Then nothingness fills the void of silence once again.
That was only one small thing that we have to work with. Bill has to remember that his son has not had to deal with older people and never with Alzheimer’s and Dementia. It is a shock for him to see his dad like this, and he doesn’t see it as bad as it really is. Thankfully, there is no one else on Bill’s side of the family that we have to hold their hand and deal with this too. What I mean by that; It’s hard enough to bring one person to understanding this sickness and accepting the condition of their loved one, and would be that much harder to have to help two or three through the same thing at the same time.
Many people balk at someone trying to explain their loved ones health condition. Some wonder if you think that you know it all and are lording over them. No, I am trying to help him come to an understanding of their loved ones condition so they won’t do things that aren’t good for their loved ones abilities.
When you look at this, it comes down to the importance of the relationship that Bill and I have built over the years that is getting us through this. My sister said it all when she said that when you get old, all you have is your family to take care of you.
How am I doing? I’m just plugging along like everyone else is and taking it one day at a time. Here I thought that this was going to be another story of my feelings of taking care of my husband, but it turned into something else added in and that is okay too.
There also was a sparkle, and I loved it. That short piece is called “Twinkle”