Through my work I am very privileged to meet and chat with people whose day-to-day life revolves around caring for someone with dementia or living with it themselves. Why ‘privileged’ you might wonder? Simply because having walked this path with my father, I know how tough it can be, and I have the ultimate respect and appreciation for what living with dementia really means both for the person themselves but also for those who are closest to them.
A lady currently caring for her husband said to me last week that she feels like she is drowning, that bit by bit dementia is literally sucking the life out of her, her marriage, her greatest friendship, her home life and her future. She is realistic about what the years ahead hold; she notices every change, every deterioration in her husband and plans everything, such as she can, on ‘worst case scenario’. She says she sees nothing ahead of her except darkness and sadness.
Another lady contacted me to describe the great emptiness in her life. Due to her own health she could no longer continue to care for her husband of 50 years at home, and reluctantly had to take the decision to move him into a care home last year. Having been married at 22, and never spending more than a few nights apart in all those years, she felt as though the blow dementia had dealt her life was, in many ways, worse than the bereavement that comes when a loved one passes away. She described it as if the disease was taunting her, explaining that although she still visited her husband every day, he appeared utterly oblivious to her presence.
Dementia doesn’t just affect older people either. I still remember very vividly hearing the heart-breaking tale of a lady whose husband had been a high-flyer in London. He had been offered and taken early retirement at 51, and he and his wife had planned to enjoy what they hoped would be golden years of rest, relaxation, travel and doing all the things that they had never been able to do whilst he was working and she was bringing up their family. Within a year of his retirement, her husband had been diagnosed with early onset dementia and his symptoms were advancing at an alarming rate. She felt bereft and cried daily, expecting that her husband would possibly never see his 60thbirthday.
These are just three couples in amongst hundreds of thousands, in the UK alone, whose lives have been invaded by dementia. I write a lot about how having a parent with dementia affects your relationship with your mum or dad, but if anything the effect on a marriage or partnership can be even more profound partially due, I think, to the age demographics involved.
When you are part of the younger generation, you grow up to appreciate the fragility of life as beloved older relatives experience health problems and pass away. I vividly remember losing my much cherished grandmother when I was only 7. My grandfather had died when I was just a baby, and both my father’s parents passed away long before he even married my mother. If anything life as a youngster tries to prepare you for looking after your parents and coping with whatever their needs may be in the future, not that such preparation is ever enough.
In a marriage or long term relationship, where both partners are often of a similar age, having made a life-long commitment to each other and with expectations of growing old together as their children go off and live their own lives, the blow can be even more cruel. That life you thought you would always have together will never be as you expected it to be once dementia intervenes. One partner will often be faced with providing care and coping with changes in their spouse that leave them feeling completely empty , isolated and vulnerable. Moreover, as dementia is terminal, you face one day laying to rest someone who may be the only person in your world that you could truly rely on.
There are also additional considerations when a partner has dementia. I have heard people with dementia describe their sadness at being unable to share a bed with their husband or wife due to dementia giving them violent night terrors that puts their spouse at risk of being unintentionally hurt. Many couples also bravely talk very candidly about dementia wrecking the intimacy in their relationship. How their partner’s dementia means that they have lost the understanding of what intimacy is, and that they no longer reciprocate even a hug or a kiss.
Maybe as a society, with preconceptions that dementia is a disease of the old and that sex is the preserve of the young, some may feel that this is all a perfectly normal part of aging. But try telling that to the husband or wife who misses the warmth of their partner’s body next to them on a cold winter’s night, or the expression of love, reassurance, solidarity, tenderness and kindness that a kiss or a hug provides. Without those fundamental aspects of a loving relationship, loneliness, depression and the searing pain and sadness of what feels like a separation can be overwhelming.
To anyone who is on the dementia journey with their best friend, lover and life-partner, I send you my thoughts and hopes that you find strength amidst the struggle, and love within the despair. For you, ‘In sickness and in health’ has a meaning well beyond anything you ever thought it would.
Until next time…