Feeling So Guilty

By Norrms McNamara

During the past week we have been visiting friends whose family members also have this awful disease of Dementia just like I have. We meet every so often and catch up. It’s good to talk about Dementia to people who know what we are going through and also good for the soul when we have all had a really good moan!!  LOL

Unfortunately this week some of our friend’s families are entering late stages and others getting worse far quicker than I am. As we talk I can see the pain etched on their faces, faces that not so long ago, looked Defiant and bold, and yet now, there is a look of resignation and utter bewilderment as well as looking very tired from the wondrous job they do looking after their loved ones.

The people who have a diagnosis are very good friends of ours, have been for years now, and as I sit there sometimes and hear them struggle to say simple things, watch them struggle to do everyday tasks, my heart sinks and feelings of guilt wash over me like a never-ending tide. I know it’s silly, but when I see these things happening to very dear friends of mine I feel so guilty sometimes because I feel so well, (Mostly) I know they don’t have Lewy Body`s (my diagnosis) and they don’t have the night terrors or Hallucinations on a nightly basis like I do, but when I present myself so well during most of the day and they can’t, I just wish I could wave that magic wand for them.

It hurts me deeply to see this decline in my friends and I often wonder if they feel the same about me? Am I sliding down the same slide as them but just don’t know it?? They are completely oblivious to it, so, am I also? I often ask my “Angel” if I am getting worse, and as far as I can recall Elaine always says “Just a little” I think the trick is not to ask that question too often, what do you think?? I have often said that the “Mantra” for Dementia is

“Once You Have met one person with Dementia you have met ONE person with dementia”

That is something that will always be true as we are all as different as snowflakes or fingerprints, so I should be at peace with myself as I watch this awful disease take over some of my friends quicker than me, as we are all different, but this is not the case!! I go through a series of emotions which include depression, tears, but most of all ANGER!!

I am SO ANGRY at times that this horrific disease is eating away at the very fabric of our society. This disease is taking loved ones, friends and relatives away before their time, leaving destruction and devastation in its wake. And yet sometimes I think it’s my anger that keeps me going, the frustration that runs through my body makes me so angry at times that I “WILL” myself to keep going and do what I can for as long as I can!! Please believe this doesn’t make me any more of a person than my wonderful friends who are quite ill, I think I am just a lot more Awkward and stubborn than most!!

I just wanted to say that even though I have this awful disease, and even though sometimes I can see my future playing out right in front of me, it still hurts just as much so see my friends hurting and shaking their heads in bewilderment. A cure may not come soon enough for some of us, but if we can improve people’s lives in the future, if we can rid this horrid disease of the Stigma that goes with it and if we can give back the dignity to all those who feel they have lost it because of Dementia, then believe me, I will feel as if it is all very worthwhile.