Eunice's experience of being the carer of a parent with dementia

Would you like to tell us what your experience has been of being the carer for a parent with dementia? Where to start, you see, with that one. It took a long while for the medical professionals to actually realise that my mother had dementia. She kept ending up in 5 years in and out of hospital with a heart condition. It turned out her heart condition was only playing up because she kept forgetting to take a heart medication because of the dementia, which went undiagnosed for 5 years

Once they realised, the medical profession's realised that the only reason my mother was in and out of hospital was because she kept forgetting her very important heart medication. Well, there, there was a complete and utter change in my mother, the way she behaved, in her wellbeing and everything. We did have to get carers in, um, as a family we insisted that we would not allow her to go home and live independently

Even though she was 85 at the time, she still was wanting to live independently and as a family we think that is the best thing for her. And there is enough of us just to make sure she can do that. But then we got the carers that came in and they honestly do only come in to give her a heart medication and other medications she's been prescribed since

Um, but since then she's not been in hospital at all. But when people talk about dementia. People honestly do think it's just, oh, they've forgotten to do that

They've forgotten to wash up, they've forgotten to get dressed. They've forgotten to have a shower. We all think those are things you you can't

The way my parents' dementia has gone is she doesn't ask you the same things. It's not asking the same question over and over again. It's about the way she looks at you, as though she's trying to figure out how she knows you, why she knows you, and what you're doing in her house

And sometimes, The look on her face, it's like, but you can't explain to her. You can't get her to understand that I'm your daughter, I've come to visit you, you know, it's just, she just gets this look, and then she, she starts to look scared. And there's not a lot you can do when your parent is sat in their own environment looking scared because you, their daughter has come to visit

You, you know, there's not a lot you can do, but we were very lucky to be um, Trying to think of the word. referred to um Witham Court, who deal with a lot of vulnerable older people's issues, whether they be mental health issues or dementia issues, and um, when my mother was first went for the dementia tests, one of the things the doctor told me was, I know as a family this may be very difficult, but do not question, do not correct. That's the relationship I've had with my mother for all of my life

We've always questioned what have you been doing, what you've been up to. And we've always corrected, of course my father always corrected her and that's a very, that's a very instilled habit to try and get out of. So, unfortunately, I struggle to follow the instructions given by the doctor due to the relationship I've always had with my mother

But they do offer a very good counselling service as well at at the Withan Court. Um, and they also sent me an awful lot of information about, um, Meeting places and groups and activities that I could take my parent with dementia to. The only thing with all of these facilities is they seem to be during the daytime when I am still at work

I know I look like I ought to have retired many years ago. But unfortunately the government keep upping the retirement. I have still got another 5 years to go before I am fully retired and could possibly look after my mother full time

And I think with the ageing population and the increase of the pension age, we're getting to the point where there are less and less family members being able to look after their parents in this situation. Regardless of how much we would love to, regardless of how much we would move in at a drop of a hat. We still have our ordinary working lives and family lives to keep going with

So I'm really not sure about the future and where these dementia patients are gonna be in years to come, because who will be looking after them all? I don't want my mother to end up in a home not knowing where she is. She already struggles enough in her own home. To remember what's going on, and I, I, I really do want to keep a living independently, and I do hope in the future that there are more facilities taken into account that the carers of the people with dementia may still have full-time jobs

So, ideally, What, what would that look like for you? Maybe some of the activities could be in an evening rather than during business hours, or on a weekend. Because if they're at a community centre, it can be open on a Wednesday morning, a Friday morning, or a Saturday afternoon. Why are all these activities during Monday to Friday, 9 till 5? Because not all the carers of dementia patients can actually do that

What would you really like to assist you as the carer? Well, the, the people I dealt with in court were really good, but they have a, there were only so many activities around the city where we live. And obviously, there's some in my local area, there's some in the villages, cos obviously we're quite a rural place where I live and not everybody wants to come into the city. So the information I was given was extensive and it gave me all the information about all the activities available

But unfortunately none of them were a time that was suitable for a working carer. So just, just more access on weekends or even they could make them a an evening meal time thing. So you could go along for a meal somewhere

As a carer with your parent and joining with other people having a meal, it doesn't have to be a singalong, it doesn't have to be a craft activity. It could just be taking your parent out, sit in a bright nice restaurant with other people. And then you as the carer will get to meet other carers in the same situation

That is the bit I feel that I'm missing out on. Cos I don't get to meet other carers and see how. How similar my journey is to everybody else's

You start to feel a bit alone, a bit isolated, is it just me that's feeling like this? You know you're not. Common sense tells you you're not. But if I could just go to these groups and meet up with some other carers with their parents, or whoever it is they're caring for, it could be husbands or wives

And just sort of go, how are you feeling today? and speak to somebody in exactly the same boat I'm in. Has there been any follow up to you from any agencies as the carer of your mother, and would you have liked that? Um, they did offer me a telephone counselling service and um. When I realised I would just be speaking to the lady on the telephone, the information in the first place, I know it sounds an odd thing to say

I thought that was a lot to put on that lady, because if she says that to everybody and then she's the one counselling or listening to everybody, that is an awful lot for one person to be dealing with. So um. I sort of said to her, I said, no, honestly, I, I've, I've sort of, I've mentioned to the family that I need more help

And once I asked the other family members, once I let them know I was struggling a little bit. Then the other family members just went, you've you only need to let us know. That's the hard part

Letting your other family members know when they think you're the one that's been dealing with it all and you're getting on with it all so well and everything's working so fine, for your other family members siblings to find out that you're struggling just as much as they are, and could they possibly. You know, help Then I decided not to carry on speaking to the lady that was offering the counselling service. I would rather speak to my family members, then maybe I might get some practical physical help with the looking after of the parent, rather than just some emotional help with the counselling

OK, thank you. Um, final question, is there anything. That you would genuinely like to say to any organisation out out there about what really in these circumstances would be helpful, or you would have found helpful as the carer

Um There's there's a legal piece of um paperwork that a lot of people, when a, when somebody gets demented, they suggest you go and get a power of attorney which allows you to deal with all the financial affairs of that person and all the health affairs of that person. I've done all that. I have my power of attorney

I've let my mother's medical practise know this. Every time they phone up, they say, oh I need to speak to the patient. I then have to explain who I am, why they're ringing my telephone number, and then they still say, I need to speak to the patient

This is somebody that works in the doctors where my mother is registered. Surely there should be some, when they get my mother's records up on the screen, surely it should say, patient has dementia, you will be speaking to a family member. I should not have to be explaining myself every time my mother's doctor rings me

For anything. But I do, I spend the 1st 5 minutes of any telephone call from my mother's doctor explaining who I am, why they've got through to me, and could they please make the appointment with me, as I will need to be there, otherwise my mother won't be. I think that's the only

Only issue that I that I have found when dealing with any of the medical professionals. Eunice, thank you for sharing your story.