My wife has Alzheimer's and my feelings were similar and I wrote a commentary I called "I've got the T Shirt"
I've Got the T- Shirt
Yes I know, I understand, I've been there, I've got the T-Shirt, I've not really just been there I am there.
It all starts, well I don't know when it starts, just the little things, things that don't matter things that don't really matter. Tomorrow they will be fine, tomorrow it will be different.
And then there's the thing that happens, you don't mention it but it hurts. On the day it just jolts you but perhaps it's a one off.
Then there are the words they say, the words, the little phrases everyone tells you to ignore, who are you?, where is my husband?, my wife?, I'm going home tomorrow. Little words little phrases that cut into you so deep so hard you can hardly breathe, you can't breathe, it's not me it's not them how can it be us, we love each other so much, why, why, why.
Then someone mentions the D word, I don't want the D word , it's not for them it's not for us , Don't say it!.
When you wake every morning that feelings still there deep deep in your stomach, then there is that day, it comes back to you, the day you think you know when it was, then it hits you, and you are alone, they are drifting away, not us, no not the one I love.
Everything changes, you wish it was the same, but it's not, stop it changing. They use the D word more and more, they give you leaflets more leaflets, but they are just words on paper they are not for me, not for us.
Then you eventually can say Dementia out loud, not a lot just occasionally. You are no longer frightened of the word, it's sort of there, it's not that bad.
And then when you thought you were all alone a voice on the phone says Yes , says it again Yes I understand, really understand, and yes we can we can come to you, talk to you, listen to you.
The knock comes to the door you talk, you talk, you talk, and they listen they understand, they want to understand they truly understand. You are not sure what they are saying but it doesn't matter , they are here for me for us and they have answers, they have solutions.
They know where to get that thing that little thing, that niggle, sorted and you feel you can breathe, they are making the changes easier to handle.
You want to grab the finger tips, you don't want to let go, it's there in front of you, what you want to know, what you want to hear.
And the second they give you the hope, the feeling that they are walking in your footstep, no matter how small, how little the steps, you feel so much comfort so much relief you want to thank them not just a thank you, you really want to show them that you know they are helping.
I know, I've been there, I've got the T-shirt.