How It Feels.

There's a great blog/information site about Alzheimer's and dementia called "Alzheimer's Reading Room" begun a few years ago by a man who cared for his mother with dementia.  While I'm sure he started it as a way to write about his feelings and difficulties as a caregiver and losing his mother, it has over time become something of a clearing house for articles, information, studies, other blog posts, and other information that he searches out and links to or posts on his site.  It is one of the most well known health/dementia blogs and well worth a (free) email subscription.  Today, he had posted an article written by a well-known author and blogger, Marie Marley, that put into words something that I've actually been thinking about the last few weeks - how it feels to be the person with dementia, not the caregiver.

It's not as though I've never thought of or sympathized with the person suffering from dementia, it's just that the advocacy of caregivers, not care-takers, has become my focus.  I tend to see life from the point of view of a caregiver, and I feel strongly about how they are overworked, overwhelmed, and over-tired.  I want caregivers to have the tools they need to deal with the difficulties of caring for someone else, and I want them to feel as if they matter just as much as their care-taker, a fact that seems to get lost in the shuffle of caring and thinking about someone with an illness.  It doesn't seem fair to me that caregivers have to put up with so much - but again, I am acting from my own personal experience - and it is possible that I should practice a little more empathy towards the care-taker as well as the caregiver.

Just as this article describes, it must be horrible to lose so much, to know that something is horribly wrong and to be reminded of it on a daily basis.  Marley describes so well the embarrassment, humiliation, confusion, and discomfort that we all have felt from time to time when we messed up or didn't have the right answer - something that dementia sufferers must feel over and over as they get something incorrect or do the wrong thing and go the wrong place.  I can't imagine repeatedly trying to explain and process the events and people of the present to myself when all I had were some spotty memories from the past.  It must be terrible.

It must also be terrible to have to accept help constantly, all the time, every day, 24/7.  I actually know what this feels like, because at times in my life, I have been physically incapacitated for weeks at a time - dependent on others for assistance and patience.  I have intensely disliked these times, just as a I dislike asking for help, so I have somewhat of an understanding of how hard it must be to feel all your skills and knowledge and abilities slip away, to the point where you can't do anything for yourself.  I'm a little sorry I had to be reminded of it; the fact that it is always easier to be the stronger one, even if you are working your butt off caring for someone. 

Although I was already coming to this conclusion myself, she convinces me to have more empathy for those who can't help what they have become.  I will continue to be on the side of the caregivers - fighting for their rights and needs and lives -  but I can only believe that having a little more understanding for what a dementia sufferer, like my father, is going through, will help me help them. I encourage you to read the article, and check out "Alzheimer's Reading Room" for more informative and touching posts.


http://www.alzheimersreadingroom.com/2013/06/how-do-people-with-alzheimers-really.html