Our member Chris Higgins and his wife Angela, who live in Belfast, have been married for almost 20 years. Chris was diagnosed with dementia around two years ago and since then Angela has supported him to live well and maintain his quality of life. Here, Chris and Angela share their story of supporting your partner when they live with dementia.


CHRIS:

When I was diagnosed with dementia, my wife Angela and I already had a long history of supporting each other through life’s ups and downs. We have no secrets, we know everything about each other and we approach life as a team. Angela is a strong woman and I’ve been fortunate to have her by my side to support me to continue to do the things I enjoy.

Having Angela with me on this journey means the world to me. I’ve seen situations where after a person has been diagnosed with dementia, their partner struggles to fully support them. It may be understandable as the partner may be ill themselves and maybe they can’t be there for their husband or wife.

But Angela has always been there for me. In fact, I couldn’t name all the ways that she supports me as there are so many!

Day-to-day, Angela helps me in lots of practical ways. She keeps me on track with appointments and encourages me to get me out and about for walks and drives. She does the cooking as my symptoms make it difficult so I had to give that up - and she doesn’t mind when I don’t do the cleaning!

Emotionally, Angela keeps me upbeat. It is hard enough coping with stress in life when your health is one hundred per cent but with dementia you can get very agitated. If I’m worrying over something, it can easily become tenfold. Angela senses when I’m feeling down and knows how to get me moving again.

People with dementia can struggle with nightmares and may need support 24 hours a day. Angela’s support is constant – all day every day and throughout the night. With other people if I needed help with something there would maybe be misunderstandings or even arguments. But Angela is open-minded and patient. These are important qualities to have when supporting someone with dementia.

I can’t imagine where I would be if I didn’t have Angela to support me throughout my journey with dementia.

As well as Angela’s support, I really appreciate the support Dementia NI has offered me. The charity has been outstanding in enabling me to get involved in different projects that aim to improve things for people with dementia.

The Empowerment Groups have allowed me to get together with other people with dementia and forge friendships. It shows that just because you live with dementia doesn’t mean you’re on the scrapheap yet!

The DEEP network has also been helpful in putting me in touch with people with dementia across the water.

If there is anyone out there whose partner has recently been diagnosed with dementia and they are unsure of how to support them, I would advise them to seek out other carers to understand what they are facing and get advice on how to cope.

I can’t express the value of Angela’s support and what she means to me. It's beyond words.

ANGELA:

When my husband Chris was diagnosed with dementia it wasn’t a huge shock to me. Chris had been behaving in ways that he wouldn’t normally. I remember once we had taken the caravan to Cornwall and Chris got frustrated and angry when he couldn’t find where we were going. That wasn’t like him as he was a driver all his life.

So I wasn’t shocked, I just felt a sadness wash over me. But there was no question that I was going to do what I could to support Chris at home.

One of the ways I try to support Chris is to prompt him to get on with things, to keep active and do what he would have done before his diagnosis. Chris has always had a brilliant brain so I encourage him to do activities that will enhance his brain - like home repairs.

Chris’s symptoms aren’t advanced so there is still a lot he can do for himself but I’ll remind him to do things like ordering his prescription. And I’ll prompt him to do chores like hoovering the floor or washing the dishes.

Until a few years ago, Chris would’ve cooked breakfast for me but he would find that difficult now, so I do the cooking. But I’m a professional chef and it’s my kitchen so that’s fine by me!

If Chris is forgetful or makes a mistake with something, we just laugh about it. I can do the daftest things too! Chris is naturally funny, he makes me smile all the time and I know how to make him smile too – normally by trying to prove him wrong over something!

I don’t think of myself as a carer as Chris is still my husband, he just needs looking after. There is no doubt that Chris would do the same for me if the situation was reversed and I was the one living with dementia.

I was in hospital in Dublin three months ago having a kidney removed and Chris took me down there and looked after me when I came home. I don’t know what I would’ve done if he hadn’t been there, helping with the housework and giving me emotional support. He wouldn’t let me get out of bed!

Of course, it isn’t all plain sailing. I’ve had to be a strong woman all my life but I have my wobbly moments. I live with depression so I’ve had to cope with my own stuff as well as Chris’s dementia.

It can be hard seeing his symptoms develop. I worry about letting him down. I can be unsure about how best to support him sometimes and I do get wobbles.

When I’m having a wobbly moment, I just take a deep breath and walk away then I come back again. A bit of time out really helps me to cope. I also love doing crosswords and cooking. I’ve kept those activities up and they’ve been a great outlet for me.

Since Chris’s diagnosis, finances have been a bit of an issue and we have to be careful that things don’t get on top of us. Chris’s dementia means he has had to give up work - but we have the same bills we had when he was working. I have continued working and due to his dementia Chris is entitled to PIP but we’ve found the PIP system difficult to navigate.

Chris has had to continuously prove his symptoms which shouldn’t be the case because dementia is ongoing, it doesn’t get better! Chris worked hard all his life as a driver and didn’t want to give up work so it’s very frustrating that there isn’t more support with the PIP system.

I also think there could be more support offered to carers, emotionally. I haven’t really found a good carers’ group I can confide in but then I am the type of person who likes to sort things out myself so perhaps I haven’t needed it yet. As Chris’s condition advances, I may need more support emotionally but I’ll deal with that when the time comes.

Chris and I are very happy together. We’ve had very few rows in the 20 years we’ve been married and his dementia hasn’t changed that. We both get really hurt when we do argue and it doesn’t matter whose fault it is, we’ll make it up right away.

Looking after Chris I feel like I’m doing something worthwhile and contributing to his happy life and his journey. And Chris being happy is what matters most.

Thank you to Chris and Angela for sharing their story.

Click here to read our information on supporting a person with dementia.

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