Carers meeting

(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.