Day time help not want you want…. yep indeed.Thank you for putting into words everything I've been feeling.
I agree this should be published. There is so much press and media coverage of Dementia at present but as has already been said, it doesn't say it as it really is.
My husband has Dementia with LB, I know it's LB but his consultant still only says Vascular.
I'm tired of friends telling me he'll be better in a home. I don't want him in a home...he doesn't want to go in a home. We feel we're being forced down a route we're not ready for.
He may now need a placement as he's recovering from pneumonia and the infection seems to have pushed him down the steps a little further.
He's now very hostile towards me, frustration I know, but very difficult. Yes I know to walk away but that's hard in a two bed roomed bungalow, and especially when he's holding me by my wrists with such strength!
He's at present in respite (while I recover from a sinus and throat infection) at a lovely home that's 60+ miles from me, as where we live there are only two EMI nursing homes, near. One I won't put him in ever, and the other is full, and that's still 32 miles away.
Social workers are fed up with us as I won't just place Hubby where they say or when, and when we've tried respite and I've brought him home, when I've found him sat in soiled clothes, or he's fallen and they haven't told me, or he's just been so unhappy at being with these old people who do nothing.
They keep telling me 'well when he needs it, the homes won't take him'
I know there'll never be a perfect home, but I want to care for him here for as long as I can.
I can if I have support but it's not there when I need it.
Crossroads come in one afternoon a week, and he goes to a centre twice a week, for four hours. He can't go at present as he's still recovering from pneumonia.
I work freelance so I pay for extra care ( if its available) when I'm off teaching.
I don't need carer's to help during the day, as I don't want someone coming in at 7 am to give him a cup of tea, when he (& me) only went to sleep at 5, after another restless night!
Admiral nurses are what we need, Help at night is what we need,
So much has been done for people with cancers. rightly so, but now it's time the same resource and understanding was given to Dementia.
Dementia is hidden away. We are all coping in our own ways, mainly behind closed doors, shut off from friends, family and life as we knew it.
I have written to my MP, who missed the whole point of my first letter, and has not even replied to my last rant!
I'm now left to wrestle the hardest decision yet
I've had a carer arriving once weekly, will I wash your Mum's feet, give her a wash…Mum pretends to be asleep. If she's agreed to a wash the previous day, " would you not keep it for me to do?" Stays 10mins then leaves. Nice lady but it's what she's told to do.
Been paying for a carer 4hours weekly, all I can afford. But Mum treats her like a guest. Holds needing to pay a penny until she leaves. Great woman but doesn't multi-task like me. Doesn't notice the care aspects sometimes as Mum is so enjoying singing and chatting. At least they are developing a relationship and she's stays awake. I'm lucky I found this particularly carer.
We've just been asleep sometimes from 6am. Expected to be alert and available for all sorts during the day. Been like this for months. The letters or mails aren't read or understood. Now as I try to get help, never get a little nap during the day.
I bore friends now, I try to talk about something else but my life is dementia, Mum and frustration. I bore myself sometimes