I could cope with what dementia threw at me as long as I knew what was happening.
My name's Alan Hewitt, I'm a former carer for my wife Ann who was diagnosed with dementia in 2012,
she died in 2017. (Pre-diagnosis) The dementia journey started
before diagnosis for us. Ann was having problems with a memory
and she had a very good memory prior to that.
She was the one that remembered things, I didn't, she remembered them,
but the thing that brought it to mind most of all from to me was the fact that she started repeating
the same things over and over again within a very short period of time. So she'd say 'oh isn't it a
nice morning this morning' and then 10 minutes later she'd say exactly the same thing again.
Eventually it was not just, you know, a few times, it was dozens of times that she said this.
I tried to talk her into going to the doctors. I didn't know what it was that she was
having a problem with but I realised that there was something wrong with her.
The doctor that we went to was somebody that Ann knew very well and got on well with so I felt OK
talking about it and she said I can't do anything about it until she comes herself to see me, so try
and persuade her to come, but I couldn't persuade her, she was quite happy just bobbling along.
But eventually she decided at the end of, it would be about October 2011,
that she did want to go to the doctors. I had finally got through to her.
(Diagnosis) We got the diagnosis and it went something along the lines of,
It seems possible that you've got dementia, specifically Alzheimer's disease,
that there was no cure for it, there was medication that would slow it down.
What she knew now was going to be the most she would ever know but she would
gradually lose some of the things that she did know, forget them all together
and that was, that was the end of the the conversation. Apart from the 'have you got
any questions' and you can imagine that at this time I was just totally stunned.
(Coping methods) I just wasn't coping and Ann wasn't having a particularly
good life because all she wanted to do, was after she'd got up, had her breakfast,
I'd say 'right what should we do now'. 'I'm going back to bed' and that's all she did because I
guess she felt safe in bed. She, you know, she got no worries she could go to sleep if she wanted to.
And i just didn't see this as being a life that was good for her and it was getting me down.
I went to see my GP, she was absolutely brilliant, she was a young GP, she was not
long out of training, she didn't mind me crying all over her, kept on feeding tissues to me.
She said 'look we need to do something about this, what I'm told I should do now is refer you to
social services, but I can see how upset you are, I'm going to ring them up now.'
And she did just that and the following day I got a telephone call from social services
asking me what they could do and I just explained the situation.
They said well we can send you details of loads of organisations locally that can help you.
I rang them up, we got somebody came out almost straight away to see us within a day
and things totally changed.
It's just getting to know the person with dementia and or just treating them as a normal person.
My son put it, 'we've got the the old Ann and the new Ann'
and the old Ann was a worrier she worried about everything,
she went from that to being very placid, just sort of getting on with things and not worrying
and she liked gardening, so she'd, although she couldn't do a lot of it,
she would like to go out and look around her plants or for us to go out, you know,
to somewhere, to a garden centre or somewhere like that, just to walk around and look at the plants.
She liked doing sewing and stuff like that but unfortunately she just lost the ability to do it,
we tried to, I tried to let her keep on with it but she just,
she just couldn't handle needle and thread and stuff like that you know and it was the same with
with cooking. I can still see her standing in front of the
cooker saying 'I don't think I can do this any longer, I don't know what I'm doing'.
I found that the thing that she she liked doing was listening to music so she's got lots of CDs
of the music that she'd collected during her lifetime and so I'd play that for her
or she liked watching stuff on television but it had to be stuff that hadn't got a storyline.
Cartoons in particular things that made her laugh the number of times she watched
Paddington the bear and she liked it all the time because it had got short pieces in,
although there was a story running through it, it got short pieces in that she could follow.
(Future planning) People do not talk about the dying part. The mantra of the Admiral Nurses
is that they can't change the dementia diagnosis but they can hold your hand while you walk that
rocky road and you know, that's that's all you ask for with dementia, isn't it?
Make sure that you put things in place for later on. There are some things that you can put in
place that will make life easier like a Lasting Power of Attorney, not just the one for finances
which are important but the one for health and welfare and make sure that you
know exactly what your partner, or the person you're caring for, what their thoughts are on
how they want to be looked after later on. You can say whether you want things like do not attempt
resuscitation put in place, which I knew Ann did want putting in place, because we'd discussed it.
I found throughout the whole of the dementia journey
I could cope with what dementia threw at me as long as I knew what was happening. It's
when things happened that I'd got no control over that made it hard.
Like the beginning of the journey when there was no help out there, well that's wrong,
isn't it, there was help out there but I didn't know where the help was.