We chatted to journalist Kate Corr about her experiences of caring for her mum, Sarah, who was diagnosed with mixed dementia in 2000.

Who are you?

Kate Corr – my mum Sarah had dementia. She died in 2007, aged 80.

When was your mother diagnosed?

My mum was diagnosed with mixed dementia in September 2000, just six months after her younger sister died with dementia. Mum had helped to nurse her sister through the illness, despite already showing classic symptoms of it herself.

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How would you describe the role you played in the dementia journey?

I was Mum’s youngest child (one of three). I supported her as much as possible on the dementia journey but it was difficult because I lived in London with my young family, and she lived in Newcastle.

Is there anything you know now that you wish you’d known earlier?

I wish GPS trackers had been invented and that I’d known about so many other products which are now available for dementia care. A key safe (what a brilliant idea), a dementia clock and a picture button phone, for example, would have made our lives so much easier. In fact, I’m pretty sure that if we’d had access to the products available now, Mum could have lived in her own home for much longer – perhaps her whole life.

I wish someone had sat me down and given me some honest advice about the best ways to approach dementia care. I wish they’d told me it was okay to bend the truth a little if it stopped Mum getting distressed, that when she became angry not to take it to heart because it was the illness talking, and that her increasing paranoia was a common symptom of the illness, not a sign that she was going mad.

I wish I’d known about the number of reminiscence products available now, so that I didn’t have to rely on the same old photo albums and a handful of scratchy records (yes, records!) to take her on a trip down memory lane. It would have made the time we had left together more enjoyable and interesting.

I wish I’d known that anti-psychotic drugs should only be given as a last resort and that they can have very harmful side effects. (I’m heartened to see that they are now prescribed much less than they were in 2006/7).

I wish I’d known that the dementia journey can contain laughter as well as tears, and sometimes both at once. The subject of false teeth and (where-have-you-left-them-this-time?) was one which could have Mum and I laughing until we cried.

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Sarah Corr, aged 19

Have any particular products helped?

Nothing much was available really, but we did have a pill dispenser which was invaluable and we used lavender oil to help her relax. She had a big button phone which helped but wasn’t as good as the simple picture phones you can get now. She also had a burglar alarm which was operated via a key rather than a number pad which she found easier to handle, though she did often lose the key!

Have any services made a difference?

Social services provided several home helps who did their best but weren’t trained in dementia care, and she had a very sympathetic GP.

How was your mother diagnosed?

Mum was diagnosed by a geriatrician at her local community hospital. She went on her own for the appointment and, after being given the Mini Mental State Examination, was told she had ‘early to mid-stage’ dementia. I was very upset that she’d been given the news on her own and puzzled as well, since she’d told me many times that she’d ‘rather not know’ if she did have it. Somewhere along the line she’d clearly changed her mind.

Were there any earlier signs that, looking back now, you recognise as the early stages of dementia?

Yes, there were lots of signs. Mum’s memory had been ‘bad’ for years, she regularly mixed up days, months and even seasons, thinking it was nearly Christmas in June for example. But I don’t think any of us (including her) wanted to admit what it might be – what was the point? There was no cure… It was also quite easy to find other reasons for her memory loss and confusion. Mum had suffered depression and insomnia for many years which can both cause dementia-like symptoms. Watching the sister she adored deteriorate with dementia had been traumatic, too, and her grief no doubt compounded her depression.

On top of that, she also suffered from pernicious anaemia (which can be another cause of forgetfulness) and needed regular vitamin B12 injections, after which she always seemed more lucid.

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 Kate and her mother and sister on her wedding day in 1996

What happened once they had received the official dementia diagnosis?

She phoned and said, ‘don’t worry, I will fight it.’ But she was very frightened and didn’t really want to talk about it after that. Mum was a widow, lived on her own and was adamant she would remain in her home. As a result of the diagnosis she was soon prescribed Aricept and received a daily visit from a Home Help who would do housework (if Mum allowed her!) prepare breakfast and lunch, and remind her to take her medication.

Apart from that daily life continued as normal, though with more visits and phone calls from her family. My brother lived nearby and would visit every day, my sister and I both lived 300 miles away but began to phone every day – sometimes several times throughout the day to make sure she was okay. We also took over responsibility for talking to doctors, consultants, social services, home helps and the occasional community nurse who would pop in to see Mum.

How did you tell people and what was their reaction?

Although they didn’t mean to be unkind, some people said things which were quite crass and upsetting. The most typical reaction was to make light of the dementia diagnosis and tell a funny story about ‘someone they knew’ who’d had it. For example,’ Oh, my great grandma had that, she thought she was Queen Victoria/Marilyn Monroe/Shirley Bassey, it was so funny!’ Then they’d ask, ‘does she still know you?’ If I replied ‘yes of course,’ they’d look very relieved, assuming this meant everything was ‘okay’ when it really wasn’t okay. A few people sadly stopped visiting Mum, which I think was out of fear and embarrassment.

What challenges did you face, when did they happen and how did you overcome them?

Forgetting keys and losing money
Mum used to say she was like a ‘caged animal’ if she couldn’t get out of the house every day and living with dementia was not going to prevent her from doing exactly that, whether that meant going to church (she was a daily mass goer) or to the supermarket. We left spare sets of keys (and alarm keys) with several neighbours who were a great help. Cash regularly disappeared from the house and Mum was quick to blame other people for taking it which could be extremely embarrassing. This became easier to manage once we’d sorted out the Lasting Power of Attorney and limited the amount of cash she could get out of the bank.

Shopping and getting lost
Mum continued shopping every day for food. She soon had an EU butter mountain in the fridge and enough loo roll to last a year, but looking back, I can see that daily shopping trips gave her a sense of purpose and identity, who were we to deny her that? Even if it did mean eating an awful lot of butter. As her illness progressed, Mum started getting lost on her daily outings. Like many people with dementia she didn’t ‘wander’ aimlessly - she always knew where she wanted to go, but couldn’t always get there. Luckily, she lived in a friendly, close-knit community and would invariably be found and brought home by a relative, friend or someone who knew her. But relying on luck and kindness wasn’t, we realised, a long-term solution. GPS tracking devices were a long way off…and mobile phones were too complex for her to manage.

Going into hospital
Mum was sectioned twice under the Mental Health Act which was a harrowing experience for her and for us. She tried to break a window to get out of the hospital and on one occasion she even found a pay phone and dialled ‘999’ saying she was being held against her will (which was true!). But when a team of experts (including doctors and social workers) told us it would be too dangerous for her to continue living on her own, we had to accept it. In some ways, it was a relief to be told what had to happen next, rather than have to make such an agonising decision ourselves.

If the person you cared for is not alive, how many years was it from diagnosis to death?

Mum died in September 2007, seven years after diagnosis, but on reflection I’d say she lived with dementia for around 11 years. She died in a nursing home after suffering a stroke. She didn’t die ‘from’ dementia but ‘with’ dementia and retained many of her faculties until the last few weeks of life.

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Sarah Corr on her 80th birthday, just before she died

Has your experience of living with dementia been better or worse than expected? Has it changed your perceptions of it?

The overall dementia journey was definitely harder than I expected. My main concern at the outset was that one day – soon perhaps - my lovely mum wouldn’t even know who I was. But that fear soon diminished, replaced by far more practical concerns such as, would she set fire to the house? Would she fall down the stairs? Would she get knocked down by a car on one of her shopping trips? Would she get mugged in the street? (She insisted on carrying bundles of cash with her).

When she moved into a nursing home in 2006 she was so vulnerable that the only thing I really cared about was the care itself – was it good enough? In the first home it clearly wasn’t and she ended up breaking her leg. However, in the final stages of her illness (and now in a second, much better nursing home) I was pleasantly surprised by how many good days she seemed to have, whether this was because she no longer struggled to make sense of what was happening to her, or because she felt safe and secure in her new environment, (or perhaps a combination of the two) I’ll never know. Whatever the reason, I was extremely grateful for it.

Overall I’d say my perception of dementia has changed. I’m not as fearful of it as I used to be because I know that with the right kind of care and support a person with dementia still have the capacity to enjoy life. I’m also confident that we are becoming a more dementia-friendly society, and far more able to show understanding and compassion for people like my lovely mum as they wander around the supermarket looking for the butter!

Lessons Learnt

Prepare for the future but without dwelling too much on it and worrying about what might happen. Instead, learn to live in the present, make the most of every moment…and expect the unexpected!

Want to share your story with Unforgettable?

The dementia journey can take many paths, but we know from those that we meet every day that if there's one thing that can help those with the condition, their carers, and their friends, it’s hearing from other people who’ve been there too.

That’s why we’d like to invite you to share your story of caring for someone with dementia. Knowing that it’s not just you that’s going through the various challenges and experiences can reassure, teach and help others in the same position in so many ways.

Simply fill out our questionnaire by clicking HERE.

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