Such a bad day

[connie]

I had a review of Lionels progress at the day centre last week. I was trying to be so positive, praising every litle effort, should't say little, but you all know where I am coming from.
Today, he could not even get into the car sent for him to go to he day centre. He was standing next to the car, banging his against the body, and saying he 'just could not do it'.
Lionel has so many'spacial awareness problems' and to day was a bad day He has come home tonight, comepletelely unaware of any difficuality. I feel so isolated.
Lionels intullect is unaffected on some days, but day to day living is Hell.
Sorry to winge, Connie.

 

[Jude]

Dear Connie,

I understand totally. The problem with living 'day to day' is that one is unable to make any plans beyond the 'now' and you never know what 'today' is going to sling at you. Having a future that is limited to 24 hours isn't very satisfying really.

Hope today will be a better 'today' than yesterday's today.....

Jude

 

[Brucie]

It's the very 'up and down-ness' that is so difficult.

We can almost adjust to a continuing worst case, but when day dawns and they seem a lot better for a short while, then that throws us, partly because it serves as a reminder of how things once were, partly because the adjustments we have made are suddenly put in doubt, and we don't know where the hell we are.

All you can do is to recognise the better days and try to 'enjoy' them as much as possible, and to recognise when days are worse, and put on the mental and body armour and battle through.

I've never been one for violent movies, but there's a scene in "Kill Bill" where Uma Thurman is faced with seeingly hundreds of people wielding Samurai swords and other weapons. In a very stylised way, she dispatches them all. I love that scene because I liken it to all the demons that pursue us when caring for our loved ones who have dementia. Slash - that's social services for their lack of help... slash - that's 'the system' that doesn't care... slash - that's the friends who deserted us... slash - that's the doctor that was so unfeeling... slash - that is dementia... etc

 

[storm]

Dear Connie,I have found it really hard that no 2 days are the same with A/D its the constant shift of memory that throws me, one day mum can be totally locked in her world and the next she is so with it it makes us wonder if we have got it all wrong she seems so together! I have now stopped trying to figure it out and just go with the flow, i have found that she picks up on my moods if i am up beat and happy she is too i deserve an oscer sometimes but it works. storm

 

[Sheila]

Dear Connie, the others have said it all really, so just wanted to say I am thinking of you and sending you a big hug for being such a wonderful person. Caring for dementia sufferers is a totally different ball game from any other type of caring, when you say, ... you know where I'm coming from,... it takes another dementia carer to understand. Believe me, we do, and we all feel the despair some days. Hope tomorrow (oops sorry, today) is better for you both. Lotsaluv, She. XX