Families affected by dementia often let me know the ways in which they manage day to day with the effects of dementia. All too often I am in awe of the sheer tenacity and strength which these families demonstrate so that they can continue to enjoy their lives.
Often we hear in the media about the negative factors which push couples to the limit, especially as the dementia reaches points of new ways of challenging those around. Sometimes this may be changes in behaviour, such as ongoing allegations of betrayal of trust, verbal aggression and decline in usual pride in appearance. The list is endless and throughout the dementia these changes may be transient or stick around stubbornly for months. This is the downside of dementia and is often emotionally exhausting for the all those affected, including the person with dementia.
However, often this means that even in the reality of these difficulties that the entire relationship becomes or feels, one sided with the person with dementia sapping the entire love and cherishing from that relationship. Whilst in no way negating the challenges of living with dementia I am simply wishing to offer hope in the light of some of the findings from my conversations with families who agree to discuss in depth their changes as they try to live with the condition which frankly they would rather not have. And lets be clear most of us would rather have cancer than dementia. So when dementia hits the shit many live in fear, resentment and general bewilderment.
I would like to share with you some of the profound insights which people with dementia have told me, in confidence, about the concerns they have for their loved ones. I think all to often we consider the negative aspects of dementia and the dominance this holds over marriages and family relationships. I think we need to think about a couple of things;
Firstly, people with dementia, regardless of the “diagnosed type”, frequently have profound insights into their condition and worry about their loved ones. Deeply. This may be difficult to express in ways which are usual for that individual. The ability to organise and get the right words out is deeply frustrating and carries with it the knowledge that their spouse or other loved one is trying their best to understand. Tolerance and a deep love are often the only sources of help, which can be stretched to the absolute limit and then some more. Individuals with dementia, have expressed their deep appreciation and absolute love for their spouses and families but also their feelings of alienation and difficulty trying to make sense of conversations. Likewise spouses talk of the depth of conversations which are often limited to the simple decisions, their sheer emotional exhaustion and feeling of uncertainty in “doing the right thing . Combining these two outlooks and it is easy to sense the incredible tensions which surface not just every day but often every few minutes. Dementia in itself is very cruel.
Secondly, couples have spoken to me in ways which have led me to think that as a dementia researcher we may be missing one of the points about living with dementia. Instead of banging on about fighting and surviving dementia perhaps we need to consider that living with dementia is equally, if not more, about getting on with fostering loving relationships? We know dementia is tough and foul in itself as a condition. Couples have kindly shared with me the ways in which they have simply “gotten on with it”. This isn’t such a bad strategy to adopt: you don’t need to declare any diagnosis or adopt the activist stance. Spouses with dementia speak of how they continue to support their loved ones by helping them though tough times, such as cancer treatments, with kindness and genuine words of love. Appreciation for each other and a cherishing of the everyday in the present. No hero talk of battles or seeking the latest dementia diet plan, pills or reminiscence whatever but simply a decision to get on with living in the present. No talk of reminiscence therapy or dwelling on past events but a looking forward to whatever the day hold. No dwelling on the future either. And what does this look like?
keeping up with going to the local allotment every other day for a natter and to share home grown delicacies
going for a daily walk, whatever the weather, to meet locals and ward of discontentment and isolation by general chit chat
enjoying the hair dressers who may not quite manage to complete the fringe cut
being there during the sheep sheering to give direction and help with the general advice giving, absorbing the heat, drama and smells of the sheer sweat, fleece oils and stench of the day
attending prayer groups to soak up the sense of being with others even if the conversation details are a blur but the prayers are comforting
being accepted in the local church choir even if the singing is lacking and questions are asked during the sermon
supported with shopping in the local supermarket by staff who are kind enough to get the necessaries and disregard the basket of oddities gathered in the basket
share the dog walking in the knowledge that the neighbours dog is clearly not Fido from several years ago but he is assumed to be so
regular shopping trips to enable the spouse to read the paper and sleep for an afternoon
All these things are “small” but not so small and incredibly help to maintain and help the relationships to flourish.
Couples affected by dementia are often marginalised yet for their relationship to continue to flourish often the kindness of others is the most valuable thing they can do to support these couples when the chips are down. Everybody can really help these couples and it is so simple. No need to worry about “if you’re doing it right”. Every couple help each other with all the challenges of later life; let’s help them by simply accepting that things may not always go to plan but in the grand scheme of things isn’t that part of living and dare I say being together?
Surely this is the nub of a dementia friendly community: getting on with it despite the changes and challenges. Acknowledge these wonderful people living in our communities by kind words and accommodation. Let’s support all those who wish to continue in flourishing in their marriages, families and communities.