(Lois writes) This afternoon I sat in on the Carers meeting, a monthly group hosted by Age UK salford in Swinton. Carers Ros, Vera, Shirley, Margaret, Pam, Renny and
Betty with Age Uk Staff, Maria and Student Social Worker Dean. The conversation was frank, honest, at times upsetting, broken and relieved by laughter. I attempted to get a flavour of the conversation in my notes, which I have typed up here. I was very moved by the meeting, by the strength and dignity of the women and how they supported one and other.
It’s hard to think about it when they’re
ok- choosing a care home.
The guilt starts right at the beginning,
whatever you’re doing you feel guilty. Right from the beginning, you think you
can manage, then another thing happens and in your head your screaming- am I
pushing myself to far?
Driving, it’s a real miss in their lives- I
think particularly the men. They don’t want to give it up. He was clipping the
curb and forgetting where he was going. I was feeling so guilty thinking about
getting him to take his driving test again (people with a dementia diagnosis
need to re-test) but we had to do something about it.
Sometimes I feel my life has just stopped,
I’m just going to the shops then coming back, going to church and coming back…
For us there are no buses on a Sunday, and a journey that would take 10 minutes
in the car takes 2 hours by car.
|
Ray and Shirley |
I was sat in that car park for half an hour
crying when he first went in for respite. It took them a long long time for
them to persuade me that he needed daycare, but he loved it. I didn’t want to
admit to myself that I couldn’t cope. It comes on you slowly how bad things are
getting. Guilt- and you’re thinking they couldn’t look after them as well as I
can. I was going down rapidly, loosing weight, getting ill, after he went into
care a number of friends said they were so worried about me… I was doing an
ostrich.
They get so clingy, they rely on you for
everything, you have to do it in little bits.
I had three nights away with me dad in
Ambleside, the Hotel knew about me dad. He was fine during the day, but at
night, in a room the didn’t know… at 1.30 in the morning the night porter rang
saying; ‘he’s a bit distressed, doesn’t know his room number.’ I got down there
and he was sitting there like a little lost child, it took me nearly an hour to
calm him down he was so distressed and upset. It ended up with me having to lie
next to him in his bed trying not to move, trying to calm him down. We finished
our holiday early.
|
Norman and Betty |
We’ve got the ‘Just Checking’ monitoring
system going at the moment, we’re seeing how many times he’s getting up during
the night (you use the system for people living on their own) It’s very useful.
If you see a blue butterfly near a hospital
bed, it means someone has dementia, and needs assistance to make decisions.
Tricks and tips for holidays:
·
Lots of post-it notes up with ‘your
at…’ or ‘we’re in…’ etc.
·
Tire him out during the day so he can
sleep.
·
I would ring him up and say are you
up? Are you dressed? Your clothes are on the chair next to you…
·
Make sure they have some I.D, name and
a phone number
·
Let staff know they’ve got dementia
·
If you’re out anywhere go to the
disabled toilets- there’s only one door there so they can’t go out any other
way.
·
Once you’ve packed his case away move
it away, or (my dad at least) will unpack it again and I’ve arrived somewhere
with half the stuff missing.
·
Getting hold of a Radar key is not
difficult, I just said he needed constant care, he needs supervision- you can’t
tell a person with dementia to wait. Its especially good if you go away, how
many toilets are closed… so it’s really useful.
·
The Police have a vulnerable adult
list that they can be added to, then if they get lost they can easily access
help. Bus drivers, taxi drivers should be aware of people with dementia, should
be on the lookout, should have had some training.
|
Brother and sister Dave and Vera |
He pretends he’s
normal, most of them do- their making a liar out of you. I’ve got the guilt, am
I making a mountain out of a molehill? You start to go within yourself,
withdrawn into yourself, you feel on your own. That’s why coming here is so
important, until you’ve experienced dementia, you don’t understand, that’s why
this group is so important. After 5.00pm and at weekends the services aren’t
there, we’re with them 24/7.
He was all nice
in the doctors yesterday, but he was banging the table when he gets home, I was
thinking, is he going to hit me?
If I feel well
and good I can cope really well with him, but if I’m not feeling well I can
loose it, then I feel guilty- he’s forgotten it in 5 minutes, but I feel so
guilty.
Got to try and
put the past into the past, and deal with the future and the now, and treat the
person with dementia.
Some people will
shoplift when they have dementia, if you let the staff know most are
sympathetic, and its much less embarrassing. In most stores a vulnerable adult
wont be prosecuted. The best thing to do is to let someone with dementia prone
to shop
lifting carry
something with them in a bag, gives them something in their hands.
|
Margaret |
My husbands in a care home now, you wouldn’t recognize him. Last time I visited I thought he’d had a stroke, he was walking so lopsided.
With dementia they shuffle, patterned carpets disturb them, you need to minimalise things for them, keep things un-cluttered, keep things clear. Keep patterns away, plain open planned spaces. Even patterned clothes can be confusing. Some people hallucinate with their dementia’s, then water infections and medications can also cause them.
I want to thank all of the carers for letting me sit in the session and Maria who gently and kindly guided us through the conversation with advice and personal insights.