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God I hate this disease !! - Page 2 - Carers UK Forum

God I hate this disease !!

For issues specific to caring for someone with dementia.
My Jill had mini strokes two & a half years ago which caused Vascular Dementia. She did improve quite a lot (the brains a clever piece of kit) but she's not the girl that I married 44yrs ago, I have to look after her 24/7 and some days I think I'm going mad stuck in doors so much. I have an awful job to get her out and she hates me leaving her alone, even for a few minutes. I dont get any outside help as she flattly refuses to be cared for by strangers.
My Daughters very good with her but lives 15miles away and has her own business to run single handed. It's just not fair to expect her to help.
Who knows what will happen in the future. God forbid that I become ill. Dosen't bear thinking about!!
You've all got my kind thoughts and good wishes. Wish it could be much more.

God bless

Pete Image
Neither of my parents are in particularly good health but they don't hesitate to help me with my son if I need them to. My brother also is there when I need him. There's a difference between expecting someone to help and asking them if they wouldn't mind helping out, so maybe there's something your daughter could do?

Thanks for your kind words Rie and Bluebird. Our Daughter is a real gem and would drop everything to come and help us, but at the moment I just dont want to ask her. She works so hard at her little business making hair fasinaters & handbags to match using ostrich feathers. Then she drives all around the country selling them to shops that do bridal wear and clothes shops etc.
She was in Kent last week and is often in Cardiff too even up to Scotland!!
I'm sorry if sounded "sorry for myself" but you know how it is sometimes. Just sounding off a bit. Its poor old Danny we should be feeling for. Not me.

Bless you all

Yes it does us good to sound of now and then Pete and we all need hugs now and then too. By the way, please don't let your daughter into Cardiff with handbags to sell, there's already enough out there for me to buy, I don't need anymore!!
Take care,
Bluebird xx
Hi guys. Not too bad this weekend and hey Pete less of the old thanks !!!. We have had social services round assessing us for day care and rewspite so will leave it a few weeks the start shouting. They really have no idea how tough it is. Just having to repeat things is so frustrating and getting out is a real problem, Mum cannot get in car now so my poor old Dad is also stuck indoors, at least I work. It feels like doing a 12 hr day though as come home from work then have to start again at home, different job but still tiring !. I had a few tears earlier just frustration but tears still the same, need a punch bag to let it out !. Anyway hugs to all and thaks for support. Image
Good to hear from you Danny. You are being a tremendous support to your Dad and I bet he is really proud of you. I hope you have lovely friends like I do to support you too. I hope social services come through for you. Keep in touch
Love Bluebird x
Hi Danny

Know just where you're coming from - I too find the continual necessity to repeat everything time and time again to be both frustrating and tiring. Sometimes when I tell her something I can see from the look on her face that I might just as well be explaining in double dutch, for all the comprehension there is. But I also know that on her "good" days she hates it as much as I do and that she also finds it frustrating, so I have to try doubly hard not to show my impatience.

Just a thought but do you have a sport, maybe squash, where you could go to vent your frustration ? Sometimes I find a really vigorous power walk helps !

Hi Danny
How are you all doing?
Hello folks heres an update;-
Mum has had three strokes now each five weeks apart, the last one a week yesterday !!. Mums mobility gets worse each time and yesterday my Dad finally admitted we could not cope so rang the doctors. We had a doctor come out within half an hour and Mum was admitted to our local community hospital last night. She is settled and likes it so we feel happier, still could not sleep though last night.
Mum now cannnot feed herself, drink herself,use the toilet or walk unassisted and just sits in the chair watching TV or sleeping !.
Waiting for a space in a home for respite but have been told not available till next year that is if the home can cope with Mum at all.
So tired so am having blood checks myself in case of diabetes !!. it never rain but it pours !!!
Hi Danny
Reading your story is like reading about my own situation. My Mum is exactly the same as your Mum, although she has now had 21 strokes/TIAs over 4 years. She cannot do anything at all for herself either, cannot talk and has no mobility so cannot even sit in a chair now, so she just lies in bed. Mum is still at home with me, but I don't really know how much longer I can cope. I am so pleased that your Mum seems settled, it gives me hope.
Good luck with the blood tests and lots of hugs to your Dad, both of you need some TLC.
Take care
Bluebird Image
Empathise totally with you Danny. In the late 60's early 70's when I was 'trying' to be a teenager, with grandparents living with us, we had my grandfather on a bed at the side of the lounge, telling us he wouldn't get out of bed unless he had his ARMY UNIFORM to put on (from WW1). He would ask for tinned peaches for his pudding, his favourite, and then spit them out into my mum's hand, telling her that she had put poison in them. Then ask for them again the next day..... Other times, having been persuaded to get up, he would climb to the top of the stairs and threaten to throw himself down to the bottom (he was 'jumping for cover into a dug-out' during trench warfare). A couple of years after this, with him still sleeping in the lounge, grandma laid on another bed on the opposite side of the lounge, having had a stroke sharing the workload with my part-time working mum. Then it was decided that grandma had Alzheimers as well. I didn't get much chance to 'be a teenage girl', I just couldn't bring myself to be naughty or rebelious under the circumstances and my poor mum was told by Social Services and grandma and grandad's GP that she had to give up her work to look after BOTH OF THEM! My dad just couldn't get any of the authorities, NHS, SS etc. to take them into either a Care Home or hospital (until nearing the end). Their excuse was that my mum was at home, so they could be cared for at home by her. My dad was a long distance lorry driver, trying to make enough money to cope with all of this and at weekends, on returning home, found himself working at home, helping my mum and myself. Has anything changed at all, these days???
I wish you well, Danny, I really do. Coping with a tetraplegic hubby seems easy compared to this awful disease. Was senile dementia in those days and nobody gave you any sympathy or care or understanding.