Happy Christmas everyone. Feeling lost, sad, alone, angry and scared as I walk the dementia path with my cared for.
It's early hours of Christmas morning and instead of catching up on much needed sleep to deal with later today I'm grieving the recent losses in my widowed BIL.
Last year (as in every year since my twin sister, his wife died) my BIL stayed at my home Christmas Eve and went home after lunch Christmas Day.
This year he'll come over for an hour later today. We won't eat together as he can not eat in public now, his swallow mechanism is poor. He stumbles often and won't use walking aids or get his ears checked, so he needs to hold onto furniture. Most of the time he can cover his increasing lack of memory by simply not engaging for too long with people.
5 years ago we buried his Mum and then I was able to drive and had made the long journey (6.5 hrs) from Kent to Durham. A horrendous journey for me as I was severely abused as a child and 65% of it was in/around Durham. I'd vowed never to return, but he needed to be at his Mum's funeral. The dementia hadn't reared it's head then, just grief and long term problems from self medicating with alcohol from age 14. M's twin was a diagnosed Schizophrenic but no one ever checked M. There was no one else to get him there and so I did it.
Dec 1st I got a call telling me that his twin had died with no warning and no explainable reason, I had to take M back to Durham again.
This time round things are very different M has Korsakoff syndrome, Wernicke's encephalopathy and Lewy Body. I for my part am now wheelchair bound with my own collection of autoimmune illnesses and some extras including DID/MPD & PTSD.
So days of organising by me see us in a hired wheelchair accessible car being driven by one of my Support Workers heading back North. It's the 65th birthday of M and his twin, tomorrow the funeral.
He has little contact with his siblings, just short occasional phone calls. I'd broken the news that he has early onset dementia 2 years ago, and I know they didn't believe me. I know that in his calls he's still able to hold it together enough for know one to be able to tell that he's having problems.
I know his family were shocked to see him. He looked so old and frail and could not hide the gaps in memory or cognitive thinking.
Together we got through the funeral, wake and the journey (M travels well, but sadly I don't being in excruciating pain. Frighteningly I'm on a level of medication given to terminally ill patients in their final days).
Throughout M did well and behaved as always. That is kind, thoughtful, caring and generous. Well to everyone except me that is. My Support Worker was a treasure to undertake this trip, and I paid her for the 2 missed days of Agency work + extra as a thank you. Dear M praised her to the hilt and kept trying to give her more money. The hotel staff he praised highly to his relatives.
Me? not one word of anything but criticism, why had I not got a better car? Why didn't I wear a hat? Why was I so tired I'd done nothing?
I know that this is par for the course. I know that I bear the brunt because a) I'm the one who's closest to him, b) somewhere he knows he can trust me not to leave him.
I know this, like I know this could be our last Christmas together when he even knows who I am. Why then am I so hurt that he hasn't even got me a card? That he can't be kinder to me?
I know that for the most part this is his dementias and it isn't personal, but it's so hard at times to just be here.
Now we are home his family have disappeared again, not even a Christmas card. Somehow M has with the death of my sister, become my sole responsibility.
My short term memory is shot and I fear that maybe I am getting dementia, though I know realistically it's far more likely to be stress.
Still I'm afraid because unlike M, I don't have a Lucy in the wings. I have no family and I'm widowed too. Other than M my contacts are my own paid support workers. Once M goes home it's me and my 4 loving & lovely cats, who I wouldn't be without.
I feel so selfish, because I know that when I lose M to an increase in dementia & finally death I will be alone. I'll have lost the caring role that takes up so much of my life. The role I get so mad at, yet the thing that defines me, gives me a purpose.
Sorry for this long epistle that doesn't even raise answerable questions. I just needed to "talk" to someone and sadly you folk got the short straw.
I hope you all have the best Christmas possible in your circumstances and that 2016 is better than 2015.
Best wishes and hugs to each and everyone of you. Lucy xx