- On the Power of Love
When Jan Inman’s husband of 48 years passed away and her grief was raw, she was keen to talk. 64-year old Jan wanted to tell me all about her beloved Ron who, in the final years of his life, had developed a rare form of dementia called Lewy Body dementia. As so often with this cruel disease, Ron’s condition caused the couple untold misery – not just through its symptoms but through the lack of understanding shown by others (often well-meaning, but misguided) and an absence of truly person-centred care.
Yet their story is an uplifting one that reveals the enduring power of love. Caring for Ron as his condition worsened took a tremendous toll on Jan and eventually – when the recurrence of a teenage injury left her in constant pain and exhausted – she agreed to place him in local residential respite care. But the decision, taken very much against her better judgement, “nearly killed” her. She couldn’t sleep for worrying about her husband, and in the end she brought him home where, in due course, he died in her arms with his family beside him.
Jan told me that caring for Ron was a privilege and said that while nursing him in the last three months of his life she fell in love with him all over again.
- On Appreciating What We Have, NOW
Right now I’m researching an article on young onset dementia (when the disease strikes someone under 65). The people I am meeting are making me reconsider my life. Instead of moaning about the dog’s muddy paw prints all over the house, the weekly bills, my teenage daughter’s indescribable bedroom, I stop and take a moment to value all that I have.
I have my work, my family, my friends; I have my independence and my health. Those affected by young onset dementia are in the process of losing all these.
One woman described how her husband, a high-flying lawyer, resigned from his work the day after he was diagnosed with Alzheimer’s aged 60. “It was like a car crash,” she told me. “There was no trailing off. It was overnight.”
The rest of us can only imagine how that must have been. The implications go far beyond health; they are financial, social, emotional. A dementia diagnosis affects the whole family, not just the individual who receives it.
- On Making the Most of Every Situation
Dr Jennifer Bute was told she had Alzheimer’s at 63 and retired early. Since when she has developed a passion to help people understand the condition. She regards her diagnosis as a “Glorious Opportunity”, which is what she’s called her excellent website offering comprehensive advice for those living with dementia.
Far from moaning about her condition she describes it as “a God-given unexpected gift” because it has provided her with a rare, double insight into dementia – from both a doctor’s professional viewpoint and very personal experience.
I’m not sure I could ever display Dr Bute’s remarkable strength of character, but she’s a living, breathing example of someone who’s making the very best of her lot – to all of our advantage.
- On Empathy and Care
And then, in the course of my work as a writer who often focuses on dementia, I meet people who simply have an empathy, a connection, with those whose condition renders them unable to speak coherently. One is a young artist called Rachel Mortimer. Invited to teach some painting in a care home she was shocked to find that her “students” had dementia.
Others might have walked away. Rachel, 36, sat down and using paintings, attempted to talk to the elderly residents. Little by little, with eye contact, touch and intuition as much as words, she succeeded in engaging them. The experience was to prove the basis for Engage and Create, the social enterprise she founded three years ago, dedicated to improving the quality of life for those with dementia and their carers, through art.
Dementia has many lessons for society. Those who have it remind us to value what we have while we can; they demonstrate the pleasure to be gained from living in the moment rather than forever wishing for what we can’t grasp. Some, like Dr Bute, display courage, understanding and fortitude that I, for one, will never have. The relatives who, unasked and unprepared for such a role, care for their loved ones every minute of every day, reveal hidden depths and human strengths.
Make no mistake, dementia is a terrible thing. Behind every diagnosis is a tale of loss. It takes and takes, yet we should derive from it what lessons we can: we’ll be the better for it.