'Don’t just sit around and worry about tomorrow’ - Grant Kelly on his wife Elaine's dementia diagnosis

Grant Kelly didn’t notice any signs that Elaine had dementia. Finally, Elaine was given a diagnosis after two years of testing and GP visits.

At first, Grant Kelly didn’t really notice any signs that his wife Elaine had dementia, putting things down as being ‘a senior moment’.

Finally, Elaine was given a diagnosis after two years of testing and GP visits.

Grant shares his and Elaine's experience of dementia:

It’s not easy – in fact it’s a bloody hard challenge. We feel anger, frustration and despair but in the same timescale we can feel happiness, love and all other positive feelings, the same as any other couple. It’s a steep learning curve adjusting to live with the dreadful disease but to date we are coping well.

Seeing Elaine every day I hadn’t really noticed any signs, just putting things down to ‘a senior moment’ or being a bit ‘dipsy’ but friends who we saw only occasionally mentioned things to me that hit home so we bit the bullet and went to the GP.

It took some time, nearly two years of scans and tests, to get a firm diagnosis as there seem to be reluctance on the part of the NHS to label someone in their mid-fifties with an Alzheimer’s related condition. Once the diagnosis was finally given, although it confirmed our fears we felt some relief as we could now move on to the next step and the Alzheimer’s society and local carers group have been a key factor in moving on.

At first the immediate feeling was to cocoon ourselves but you soon realise the disease is gradual, people don’t change overnight so accept the need to be positive and live as ‘normal’ lifestyle as you can, get the most out of your time don’t just sit around and worry about tomorrow, within reason of course.

'We have to approach things slightly differently'

Elaine has always been a very sociable person and our joint interest were mainly around music, attending gigs and music festivals especially, we still do this but have to approach things slightly differently i.e. think more about the planning especially travel plans and perhaps paying a premium to get more space to move around but it certainly hasn’t put a stop to our enjoyment of these events. All told we still enjoy a fairly full social life and luckily at present we don’t have to lean too much on assistance in running our home from the various agencies but it is reassuring to know they are there if needed.

What life is like for Elaine

Elaine has a full week; she still volunteers at a local charity shop twice a week which she really enjoys, attends a day facility run by the Alzheimer society once a week, and goes tap dancing and also singing once a week. 

She has always loved gardening and still does this albeit with a bit of help which we get in weekly. She is unable to do all the things around the house that she used to do but still does what she can. The main thing she has had to give up was driving and as she was the chauffer getting about is a more of a challenge.

From a caring point of view, one of the biggest challenges is probably swallowing your pride and asking for assistance especially from friends and relations, they will usually be there for you but you are loathed to ask and often wait for them to be more proactive and offer specific help, rather than the general statement about ‘being there for you’.

I don’t know exactly what the mid to long term future will bring but we will continue to approach it positively.

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A very good article Grant. My wife was diagnosed 8 years ago at age 64 and I recognise the journey that you are on. I am very glad to see that you belong to a Carers' Support Group, I have found this very helpful. Is there a Singing for the Brain group in your area? I can highly recommend this. Keep on loving Elaine through thick and thin; accept all the help you can. Never feel guilt - you are the best! Each day will hold challenges but also good things, even if very small.

Thanks for sharing Grant and Elaine. Taking the steps this early on and getting a diagnosis is so important, because for many of us, we delayed this process and other complications followed. But at least now you can carry on doing all the things that you both used to do, be positive, and as you have realised and been alerted, be prepared in a way, for the changes to come. Best wishes.

Great advice to all of us who are trying to support our loved ones to live beyond diagnosis. Prescribed Disengagement(Swaffer) is totally unhelpful and Maureen and I seek to enjoy our lives together as we deal with the daily challenges of mixed dementia.

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