Alzheimer's Disease, My Experience.

"It seems that when you have cancer you are a brave battler against the disease, but when you have Alzheimer's you are an old fart. That's how people see you. It makes you feel quite alone."       -Terry Pratchett

Alzheimer's Disease, this is a topic I've wanted to talk about for a while.

My grandfather passed away at this time of year seven years ago. He passed away from complications that were linked to/and a direct result of the fact that he had Alzheimer's Disease. At the very end of 2013 my grandmother was diagnosed as having Alzheimers Disease so writing this post right now seems all the more fitting.


Can I preface this by saying that I'm not writing this to compare illnesses. I'm not writing this to say that my experience was better or worse than anyone else that is coping with a terminal illness. All I want to do is write my thoughts down and talk about my experience with this particular illness, the hard parts. Not that there any easy parts when it comes to terminal illness.

One of the things that I found most difficult, both with my grandfather and now my grandmother is that initial diagnosis. Prior to the diagnosis there are normally whispers among the family, assumptions about what the problem is. Each time I have heard the diagnosis you lose hope. You realise that this is the beginning of a long hard road for everyone involved and there is no happy ending. All you can do is slap a smile on, look after that person and enjoy the moments that would once have been small and insignificant.

The guilt. The guilt kills me. I felt guilty when I was with my grandfather and couldn't do anything to stop the confusion. I felt guilty that he managed to get out of the house when I was looking after him (I only popped to the loo for two seconds). I felt guilty when he would talk to me about things that happened 40 years ago because he thought I was someone else. Guilty because we had to make the decision to put him into the EMI unit of a home at the end. Guilty every time I had to say goodbye to him in the home. Guilty because towards the end he forgot how to eat and walk. None of it was my fault. None of it was anybody's fault. It doesn't stop the guilt though.

Marcia Wallace described this perfectly, better than I ever could. She said "I'm in awe of people out there who deal with Alzheimer's, because they have to deal with death 10 times over, year after year." She maybe doesn't mean it the way I interpret it but there's something in it that strikes a chord with me. With Alzheimer's, as the disease progresses, you lose more and more of that person. Each time I felt like I was saying goodbye, goodbye to that part of my grandfather that I had known and loved, that part that would only ever be a memory from then on.

Though, in the infamous words of Winnie The Pooh...

And now, we begin the journey with my grandmother.


If you would like to donate to the Alzheimer's Society then you can do so here.

Much love. xx

@latte_fiend on Twitter.