In the UK, a third of all adults will be affected by dementia during the course of their lifetimes. In honour of Dementia Action Week, Lynn Carratt shares the story of caring for a parent diagnosed with dementia.
Four years ago, at the age of 69, my dad Stuart was diagnosed with dementia. At the time it wasn’t a shock. His short-term memory had always been bad, and I share the same genes as him in that respect.
It was his doctor who spotted the early signs and referred him to a memory clinic where he underwent a series of diagnostic memory tests. At the time, he told me they asked him what a pen was, and he couldn’t remember how to say it in front of the doctor. After a couple of visits, he was diagnosed and packed off with a few information leaflets.
Experts say that an early prognosis has it benefits, as it allows a person to access treatments that can improve symptoms and slow down the progress of the disease. It can also provide them with time to prepare for the future and plan – not that this was something my dad did or wanted to do.
In the beginning, he accepted his diagnosis, and if I’m honest, he didn’t seem overly concerned. We’d have a little joke about it; he’d forget a few words or mix names up. He’d call me Lee and my brother Lynsey, and he’d often misplace his wallet or other items. His condition seemed to stay relatively stable until about year ago – now we have a whole different situation on our hands.
Since his 40s, my dad has always kept himself fit and healthy through regular exercise so he doesn’t suffer the usual body aches and pains like many pensioners do in their 70s. In his mind, he firmly believes his dementia has been cured and that there is nothing wrong with him, and if you tell him there is he becomes irate.
Only yesterday on the phone I said to him, “Don’t forget we are taking you to the doctor for a medical.” His reply? “I don’t need one, there isn’t anything wrong with me.”
Dad’s whole personality has started to change. Now, he doesn’t have any concept of money and thinks he is poor. He’s accused me, my brother and his long-term partner Hilary of stealing money from him. He then finds the alleged stolen money hidden in books where he has left it for safekeeping. His appetite has changed. He gets confused if he tries to cook, food must be put in front of him; otherwise, he wouldn’t eat. He now dislikes vegetables and would happily live off chocolate if we let him.
At present, driving is the biggest issue. After his diagnosis in 2015, the DVLA were informed by the doctors and he was given a new licence that expired on his 73rd birthday in March this year. How do you tell a man who has been driving for 55 years that he is no longer able to drive, and that he will lose his independence? It’s heart-breaking. We think he understands, but he is just choosing to ignore it.
When dementia is diagnosed, suffers are not often given an MRI scan because, in the early stages of the disease, a scan of the brain can still look healthy useless it’s the vascular strain.
Because dad started to lose his speech and it was worrying, we conducted our private investigation into his condition and discovered that he is suffering from Frontotemporal Dementia, which is a rare type and causes loss of language. (Terry Jones from Monty Python is also a sufferer.) This form of brain disease can be completely random, or it can be hereditary due to a faulty gene called C9ORF72.
My dad’s mum Hope passed away when he was just 21, so we don’t know if she was a carrier. His father Ken wasn’t. My brother and I are now looking at our own mortality and must decide if we should undergo a genetic test to find out if we, too, are sufferers. Lee believes that a cure will be found, and we shouldn’t worry. I, on the other hand, am not sure if I want to know my fate.
To make it more poignant, I am getting married this summer and my partner James has never known my dad without dementia, though I always tell him what he used to be like. We are having an overseas ceremony in Santorini and Lee has made all the arrangements for my dad to attend. We have planned that he will walk me down the aisle. He knows I am getting married, but he keeps asking when it is.
The most upsetting part for me is that he won’t be able to give a father of the bride speech. I often think about the nice things he would have said and wonder if he would be proud of me. I also have feelings of sadness because Dad will never get to know his grandchild/ren when we start a family. I wish I hadn’t left it so long.
My dad’s partner says, ‘I always think, why did it have to happen to him?’ Unfortunately, though, it can happen to anyone of us. And I now plan to fundraise as much as I can for dementia charities to help find a cure for this devastating disease.
If you’re going through something similar Helen Bould, a spokesperson for the Alzheimer’s society provides this advice:
- Looking after yourself and learning to deal with challenges: Means you will be in a better position to continue to care for the person affected.
- Get help and support as a carer: Carers who have less support are more likely to experience stress and depression. If you don’t have friends or family who can help, or you are struggling to take a break, several organisations help.
- Care home support: When a person with dementia moves into a care home, it can have a significant impact on the carer as well. You may worry about how the move will affect the person with dementia and your relationship with them. You may also worry about the impact it will have on your own life, especially if you have been caring for the person for a long time.
Dementia is one of the most significant illnesses that face us today, and there are currently no effective treatments to slow, prevent or cure it. According to charity Dementia UK, almost one million people are now living with a form of dementia, the most common form being Alzheimer’s disease. Sadly, one in three of us will be affected by the disease in some way in our lifetime. For more information, visit Alzheimer’s UK.
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