Kevin Marsch, creator of the dementia aid myhomehelper, shares his experience of caring for his mum, Pat, who was diagnosed with vascular dementia in 2010, aged 83.
How was your mum diagnosed?
I received a phone call from Mum’s doctor in May 2010 to say she’d missed a number of appointments and asking if I’d be able to attend the next appointment with her. We were sitting in the waiting room when Mum looked at me and said, ‘oh, this is just like our doctor’s waiting room.’ That’s when I realised there was more than a memory problem. Ten minutes later we were being told that Mum had vascular dementia. It hit me really hard because my grandma (mum’s mum) had suffered from it too so I knew what we were in for.
Looking back, were there any signs before that she was in the early stage of dementia?
With hindsight, I’d say there had been signs something wasn’t right for around ten years, but they crept up slowly. Mum used to say some odd things, but we just put that down to Mum being Mum. She also started displaying obsessive behaviours and taking a long time to do standard tasks – she had always been a very tidy and organised person and as time went by she would spend ages folding and refolding clothes obsessively. She was also Dad’s full time carer (he’d suffered a serious stroke several years ago), and was permanently tired, which could have accounted for her forgetfulness.
What happened after diagnosis?
Mum didn’t take it in, she just switched off. My brother and I tried a couple of times to explain it, so did a community health worker, but she didn’t want to take it on board, probably because she’d watched her mum go through the same illness and the fear and stigma were simply too much for her to handle. Dad’s reaction was quite similar – he also refused to accept the seriousness of it. My brother and I took it very seriously though, and were really worried because we all lived so far apart. Mum and Dad were in Nottingham, I was in Hull and my brother was in Kent. After a few mini crises, we persuaded Mum and Dad to move to Hull. When a bungalow opposite our house came up for sale, we jumped at it and by October 2010 Mum and Dad were living across the road – they were close enough that I could see them from my front window.
How did you tell other people and what was their reaction?
Most people were very kind but old attitudes to dementia do still lead to pointless jokes about forgetfulness and being ‘loopy.’ You’d never see anyone making jokes about cancer or other illnesses, because it would be considered such poor taste. However, there is lots of humour in dementia and it is a good way to open up conversations about it and clear up any misconceptions and share experience. If you don’t laugh, you might cry!
What were the main challenges you faced and when did they happen?
Dad died a few months after they’d moved into the bungalow – in February 2011 – and Mum went rapidly downhill. Two days after Dad’s funeral she came over to our house at about 1.30am in a panic saying she couldn’t find Dad. Her grief, living alone for the first time in her life, and in an unfamiliar place, involved a massive deterioration which was very painful to watch.
For me, the main challenge was combining full time work as an IT manager with caring for Mum. I popped in to see her as often as I could, usually before I went to work and my partner Helen and I made dinner at her house most nights and ate with her. But she would still often call me at the office to say, ‘Where are you, why haven’t I seen you?’ If work was busy and I had to miss a visit I felt overwhelmed by guilt. In fact, I soon realised that having Mum live nearby seemed to increase my capacity for guilt.
Another really stressful occasion was when Mum left her house at 4.30am on a winter morning wearing thin clothes. Fortunately, someone on the estate spotted her and took her in for a cup of tea. It could have been so much worse…
Co-ordinating Mum’s care became increasingly challenging as her dementia progressed, particularly when she didn’t get on with most of her carers. Things came to ahead when her favourite carer was due to go on holiday at the same time as us. We couldn’t find suitable replacements and ended up having to delay our holiday which meant we lost £1000.
Have any services made a difference?
After Dad died the council allowed his care package to transition straight from Dad to Mum so she had a carer coming in three times per day. We tried an arts and craft group which she enjoyed to start with but as her condition progressed she became less involved in the activities. However, we found a really good day centre which Mum attended two days per week. It was also very valuable for us to get a different perspective on her condition from the staff.
When the time came to find a care home, we were lucky to find a really good one which had just opened six miles away. She moved in last June. One of my biggest fears was that she’d ask me to take her home – I would hate to have to walk out and leave her. But she wasn’t really aware of where she was and settled in well. The staff are taking great care of her, even nursing her back to health after a fall which resulted in a broken hip. Her weight fell to 29kgs and I was convinced at one point she wouldn’t recover…but with great nursing she has, although she’s still very frail.
Have any particular products or gadgets made life a bit easier?
CCTV
The day after Mum went missing I changed all the locks and rigged up CCTV in her bungalow. A lot of people disagreed with what I was doing but it was purely in Mum’s best interest. Quite honestly, I felt that there were points on the dementia journey when her liberty had to be curtailed to keep her safe – and having CCTV definitely helped us to achieve this. We got into a routine of checking it at regular intervals throughout the day and night so if she fell during the night for example, we’d know when it had happened, where she was and how long she’d been lying there.
myhomehelper
I needed to find a simple way to communicate information to Mum which would ease her agitation during the day and stop her phoning me all the time at work. So I put a clock display on an old computer she had at home with a message for her, such as ‘Kevin is at work but he’ll come and see you when he gets home.’ I placed the monitor right next to the TV so she could see it. It worked! The phone calls stopped and she was a lot less anxious. Relieved, I decided to develop the idea further into what has now become myhomehelper.
Has your experience of living with someone with dementia changed your perception of it?
I was always aware of it because my granny had it but I know far more now than I used to. Generally speaking, there’s a massive misunderstanding of dementia. It’s far more than a memory problem for example; it’s a cognitive breakdown which effects every part of life. It’s destroyed my mum and as her carer it’s taken its toll on me as well, the stress has definitely affected my own health, I’m now having to cope with depression and anxiety.
What advice or tips would you give to others on the dementia journey?
Dementia is a learning process – don’t beat yourself up too badly if you get stuff wrong. I lost my temper a couple of times with Mum and felt absolutely awful about it. But most people do the same as they acclimatise to the condition.
Seek out as much advice as possible from the council, carers, doctors and other ‘experts’ but don’t expect them to know everything. They don’t have all the answers.
Make sure you sort out the Lasting Power of Attorney as soon as you can. It helps enormously. Having a health and welfare LPA in place made attending meetings with care works and the council so much easier because I was, in effect, speaking on Mum’s behalf.
Be prepared to share your experience: I eventually gave up my job to work full time on the gadget I invented for mum. I was sure it could help other people with dementia too and it certainly seems to be. When other carers get in touch we always end up sharing our stories which I find very useful because it eases my guilt and confirms that we’re all doing the best we can. myhomehelper is now an award winning memory aid being used around the world which I’m really proud of, but it’s funny to think that it would never have happened without Mum.
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