Still Afraid of Alzheimer’s?
What every family member needs to know.
Published: September 21, 2012
Dementia diagnosis is not the end of everything.
Both my parents had dementia. I cared for them for fourteen years. For five years, until six months before the end, Mum lived with me. If you, or someone close to you, has just been diagnosed you will be reeling. I hope my reflections on caring and dementia might help.
First you should know that, despite having seen dementia fragment my parents’ minds, I am no longer as frightened of dementia as I once was. Dementia takes away your cognitive powers, but leaves your emotional core intact. You will still – in one very real sense – be you. Amazingly, once dementia has you in its grip, you may become happier than ever. Mum was always happy, but Alzheimer’s made her even happier. Not all the time, admittedly, but a lot of the time. She found joy in simple things: silver cars, babies, and cats. Listening to carol singers during her last Christmas, she was transfixed with awe. She embraced the lead singer sighing “I love you, I love you.” This was not a woman in torment, it was a woman whose whole being was wrapped in the magic of Christmas.
Now for potential carers. I am incredibly glad I cared for my parents. Having Mum live with me was not easy. Sometimes I thought I was going crazy. But there were also good times, heart-warming times, times to treasure. Mum and I would wash up together, raucously singing “Run Rabbit.”
Sometimes she would kiss me and tell me I had a lovely face. Tears come to my eyes as I think about such times. When she died I felt huge peace; everything that should have been said and done had been said and done. What a legacy for the rest of my life.
I am grateful for the caring years. I learned things about myself and life that I would never otherwise have learned. I learned that I am capable of extreme patience and practicality. I learned about people who, selflessly and lovingly, spend their lives caring for others. I met Hubert, who daily lives the “in sickness and in health” of his vows, caring for his beloved wife Phoebe. I met Marcus who danced with Mum until she was pink with pleasure. In a world that pays homage daily to designer shoes, celebrities and house prices, meeting these people was a soul-tonic. It reminded me of what is really important in life.
But it’s not all good. Of course it isn’t. Here is some advice, to those diagnosed and to potential carers:
Diagnosis is traumatic. How could it not be? You will be shocked to the core. Here is a big hug (X). You should cry, rage and express all the fear you will undoubtedly feel. But the shock will wear off. Then you can get busy. There are many things you can do to help your future self and future carers. For a start you need to set up a lasting power of attorney. Don’t even think of withholding this: you’ll make your carers’ lives a nightmare. Next you might caption family photographs: it’ll be fun, and future generations will be everlastingly grateful.
Next draw up your medical history, as detailed as possible, including family history. Then have as much fun as you can with family and old friends. Remember that the loss of your memory isn’t the loss of everything. In particular it is not the end of love: Mum used to fling her arms around my brother and say, ‘I don’t know who you are, but I know I love you’. That’s worth a lot isn’t it?
Diagnosis is traumatic for potential carers too. You also need a hug and here’s one from me (X). The best tip I can give you is to live for the moment. Please don’t keep harking back to the person she/he once was and how they would have hated what is happening now. The person you care for doesn’t care what they would once have thought. If you live in the moment, you might not care either. Enter into their world, help them glean every moment of enjoyment, and enjoy it with them. You’ll be so glad you did.
A diagnosis of dementia is the pits. It is the end of life as we know it. But it is not the end of life. It need not even be the end of an enjoyable life. Act now to make of it the best that you possibly can.
Marianne Talbot left school at 15. She is now Director of Studies in philosophy at Oxford University's Department for Continuing Education, where she specialises in ethics and the philosophy of mind.