Dad's stopped dying continually

[jc141265]

I've been wondering why I am coping so much better in recent months with Dad's disease and put it down to either denial, numbness or the fact that now that I see him every day its not as shocking.

Today I had another thought, I think I might be feeling less distraught because...well you know how you feel like the most horrible thing about this disease is that its like your loved one doesn't just die once after a long drawn out disease but has died many many times over until it gets to the point that you feel like your heart can't take anymore?.....I feel like Dad has stopped dying so often and now its more like he's just slowly getting sicker.

Again that could be because I am seeing him every day so just like you don't notice someone close to you getting thinner as much as you do if you haven't seen them for 6 months and the next time you see them they are 10kg lighter, I'm not seeing the gradual changes. But I think too that at the moment there ain't much left behaviour/personality wise that can go, its all tending to be far more physical. There is still the personality bit though as he is drifting further and further away from me and trying to communicate less and less...but its nowhere near as traumatic for me now as it was before.

The other day I was discussing this with someone else and asking why dementia is so devestating and to explain it I said its like you haved your love one and then they die....then you grow to love the new person thats in the same body, and then they die, and this happens again and again. At the moment I feel like Dad is dying, but in the past he had died several times in the same time space. He's still dying but just the one Dad is dying for the past few months, instead of me having to have dealt with Dad after Dad dying...does this make any sense?

Also i think now I am finally giving up on the hope that somehow we'll find a way to keep him here in our world, this is sad, but not as desperately painful as trying to hold onto each of the Dad's as they slipped away from me. Depressing post eh? Sorry, but it does help to get the thoughts out of my head and express them in words.

 

[katieberesford]

hug

Hi Nat

Yes it was a very sad post, but one we can all relate to. David is changing too. When I think back 15 years and how professional in his work, so strong in nature, so caring and loving I could cry when I look now. I left him this morning looking so thin, so old looking!! yet he's so young!, so tired, so vulnerable and I wonder where my man has gone.

I can relate to what you are feeling, we all can, and it hurts, it hurts so so much.

I am sending you a very big HUG and a little tear to share with you. Its like being sisters in grief Nat eh.

Big hug and lots of love from Katiex

 

[Brucie]

Its like being sisters in grief

er.... make that brothers and sisters........

 

[katieberesford]

Hug

Sorry Brucie

A Big, Big hug for our brothers too.

KatieX

 

[connie]

Another sister here who would like to join the Family Hugging Circle. Love Connie

 

[jc141265]

Another life

It felt like dad 'died' about 3 weeks ago, it wasn't too shocking because he had 'died' many times before, but this is the longest he's ever been 'dead' before. Previously, each time he 'died', he was replaced by a new, slightly different Dad that I had grown to love and gotten attached to also only to see this new Dad 'die' as well after a time. As I mentioned in my post above, this is what I found the most horrific about this disease....

Anyway as I said at the beginning of this post, it felt like Dad died about 3 weeks ago, but this time it was like he wasn't replaced, there was just Dad's body, but it seemed as if his spirit had completely vanished this time. Today however a new Dad arrived again. Actually yesterday I could almost see him being born, there was a new spark in Dad's eyes again, it was only flickering yesterday, but it was there in full force today. He smiled at my arrival, he laughed with me, he walked with me, he reached out and touched my face, and when I finally said, "i'll see you tomorrow Dad." he said "Yes" ('Yes' is such a special word, I've mentioned before its one of Dad's least used words, but one he uses when he appears to really want you to know he's there, or that what he is saying should be listened to)

Oh my heart aches, he's back again. Will he be gone tomorrow though? Will this Dad stay only a short while, or will he stick around a bit? How long have I got with this new Dad? This disease isn't just killing Dad its killing me....I just have to hold onto the fact that when it finally does kill his body as well as his spirit completely, I will have a chance to really live again. I don't want it to win, but this half life is terrible for the both of us.

 

[JANICE]

I have had a real pig of a weekend and feel really depressed but I suppose reading the posts on this thread has helped me to realise there are others going through the same thing. After having a new central heating boiler put in 3 weeks ago the stupid thing decided to pack up on Thursday evening and we had no heat, no hot water and a flood in the airing cupboard, after screaming down the phone most of Friday we eventually got someone out to look at it on Saturday. Keith was totally confused by it all so as usual it was all left to me to sort out. Several headaches and explosions later it seems to be OK now, touch wood.

On top of that I made the stupid mistake of deciding to decorate the spare bedroom. I can do this I thought, I tried to involve Keith as much as possible because he feels everything is being taken away from him if I don't but it was very frustrating when he was just following behind me putting things back where I had just moved them from. I asked him to dismantle some of the furniture which he managed and then I turn round and he's putting it back together again!!To finish the day nicely, I went up to the bedroom last night and he had put the curtain pole and curtains all neatly back at the window after we had taken it down earlier in the day. All this before we have even opened a paint pot!! I was at screaming pitch by the time I went to bed last night. Consequently I have hardly spoken to him this morning because I am on a very short fuse and, of course I feel very guilty at feeling like this because he can't help it. It's a good job it's Monday and I have to come to work to give me time to cool down.

Sorry about the whingeing but it feels better to get it off my chest.


Janice

 

[daughter]

This dying and re-birth - it sometimes seems to happen during just one visit to my Dad.

Yesterday we were playing table tennis(!) - Dad took a few moments to realise what he should do with the bat and ball, and then he started serving. Once we got into a rythm he was playing almost as he used to (albeit with a little less gusto), and he can still spin the ball by slicing it with the bat, amazing!

Then, just an hour later, it was sun-downer time and he wouldn't sit at the table for his tea because he "hadn't got time", wandering up and down and appearing concerned that he had something to do but didn't know what it was.

Isn't the worst of fears when you don't know what you're going to have to face? The constant changing and un-predicability is so hard because I know I can't become complacent. Of course I'm glad that I get the old Dad back sometimes, at least I do still see that one occasionally, but, you're right Nat, it's difficult to cope with not knowing which 'Dad' will be there every time I visit. Will I be pleasantly surprised (like the table tennis) and be able to slip back into that comfortable 'daughter' mode, or will I have to be strong and accept the abnormal behaviour in my 'other' Dad?

It starts to become almost normal to accept the abnormal and I even begin to expect the unexpected! Holy confusion, batman.