In Sickness and in Health
Dementia in one form or another has no doubt always been with us. It is just that as more and more of us survive into old age the number of couples where one or both spouses is affected is increasing incrementally. The traditional Christian marriage vows which also form the backbone of secular marriages include promises to stick together ‘for better or for worse, in sickness and in health’. The realities of those vows can be far harsher than ever imagined when dementia appears at the party.
Other serious and chronic illnesses have an impact on marriage and family life but they do not usually affect the sufferer’s ‘self’. Companionship, conversation and a meaningful relationship are still possible, even if one half of a couple is bedridden or seriously ill. Dementia inexorably robs the couple of that connection and in so doing also slowly steals away friends, family, social life and intellectual stimulation.
The Impact on Couples
Women who imagined themselves enjoying a happy and fulfilling retirement, travelling with their husbands and doing all sorts of exciting things, find themselves effectively watching their loved one turn into an overgrown child, increasingly withdrawn and incapable of participation in the world. It is like watching a toddler grow but in reverse, with no happy end as the timeline trends inevitably backwards towards diapers and feeding challenges.
Men who belong to a generation that never had to worry about domestic chores find themselves having to sign on for cookery classes and learn how the washing machine works. (At least the upcoming generation of men in the west is more domesticated as they grew up with working mothers but for many men born in the 1930s and 40s, gender stereotypes are so firmly entrenched, there is no point in climbing on a feminist soapbox.) Some rise to the challenge and find new strengths in learning to look after their wives and themselves. For others, the route towards the care home comes quicker than when the roles are reversed.
Films and novels like ‘Iris’, ‘The Notebook’ and ‘Still Alice’ put a quasi-romantic gloss on Alzheimer’s disease and relationships. The reality is far harsher and it continues day in and day out, long after the credits roll. Real life is not a ‘beautiful story’, it is something that has to be tackled hands on every day.
Making the Best of the Situation
Carer Mental Health
There are no magic solutions to the problem as at this point dementia is incurable and irreversible but there are ways to try to make the best of the situation. The most important is to hang onto any social contact and stimulating activities available for as long as absolutely possible. If you are still working, keep going for as long as you can, even if it means changing your working conditions or working from home. You need this to keep your own mind healthy and depression at bay. Carer burnout and depression are very real and affect both parties so carer mental health is tremendously important.
Friends and Family
Reach out to family members and friends and explain the situation so that they know what to expect when they come to visit. Be sure to tell them how much you appreciate their company. They may say, ‘but we don’t want to see so-and-so like that because it is so upsetting’ in which case remind them that this is about you too, not only your partner – and you might also find it ‘upsetting’ to see the love of your life like this but you have no choice.
Young children can be particularly good at connecting with people with dementia as they can see past the disease and find other points of connection. Never discourage visits from grandchildren without having a trial first! Colouring in together, singing songs, watching old movies on TV, playing simple games, listening to stories about ‘the old days’ … many childhood pastimes are also appropriate for grandparents with dementia and can create happy memories for all concerned.
Finding Your Own Solutions
Create social interactions. Restaurant meals might be a challenge but a picnic in a familiar park with finger food could give you both a break. Discussing current affairs might be an incomprehensible task but sharing an old movie from your courting days and flipping through family photo albums can still give you a connection.
If you are short of someone to talk to and confide in, keep a journal in which you can write down your thoughts and feelings as the days go by. It will help you to keep your thoughts in order and also, looking back, gives you a record of how things are progressing.
Make use of any counselling or other amenities that are available to you in your area. Anything that gives you the opportunity to have some personal time or attend to things without anxiety is welcome. Support groups and on-line communities can be very helpful, particularly if it is becoming difficult to get out of the house.
Some communities have Alzheimer’s cafes where people with dementia and their carers get together on a regular basis in a safe environment for a chat over coffee and cake. Sharing your situation with others in the same boat can be very reassuring. It’s like a coffee morning for mums and babies but for seniors instead and gives an opportunity to discuss the challenges that the outside world does not have to confront, like sundowning, wandering and adult diapers.
One day down the line Alzheimer’s and other dementias will no longer be the dreaded blight of retirement years that they are now but in the meantime there is some solace in the knowledge that there are millions of couples around the globe who are also working through ‘for better or for worse, in sickness and in health’ and you are not alone.