This is my first blog of 2018. For me, the thing I associate most with the festive period of Christmas and New Year is family. In my case, a very large family with members widely spread – a son as far away as South Africa, some just down the road. And I realise how blessed I am because some people have literally no-one.
I have been thinking particularly about the relationships between family members. Parents and grown-up children. Grandparents and grandchildren. Siblings. You may have been all together – increasingly unusual in these times where families are so scattered, or you may, like me, have seen separate families at separate times.
For a couple – one of whom has dementia – who do not see their children regularly it can really be quite challenging. The children, visiting for Christmas, may see a marked change in one or even both of you. It comes as a shock to them as they notice deterioration which the carer/ supporter may have not noticed because they are too close. The progressive small changes, often very small, go almost undetected as the carer/supporter makes equally small changes to adapt to them. They take on more and more of the household duties, supervision of mealtimes and washing and dressing. They are also, very often trying to keep the household going as it always was. The result of all this that they become totally exhausted – a fact which the visiting children notice at once.
For the children who are busy with their own lives, holding down demanding jobs, running their own households and bringing up growing children this can come as a shock. They may or may not feel able to take on the additional burden of becoming more involved with their parent’s lives. They may struggle with the big dilemma of whether they should move a parent or parents to live with them. Or they may feel that that just will not work. Or the children may offer, and the parents don’t want to. The children may make many suggestions about how to make things better.
Of course, they may all be in agreement about what should be done. But they may not. The children may not get on with each other and have strongly different views about what should be done. Blood is thicker than water they say but that does not mean that all siblings will agree about what is the best course to follow.
For carer/supporters who are the sons or daughters of a person with dementia, the holiday festivities can pose different challenges. It can highlight the fact that they are the one who has become the “primary carer” and frustrations with siblings, when they arrive for the Christmas visit can surface about this role. Buried feelings of resentment about the fact that the other siblings are not taking an even share of the burden, can reach boiling point when you are all together in the house eating and drinking more than usual. The situation is not helped by the constant TV advertisements for sofas to supermarkets which show us scenes of happy families all having a great time together.
Last night I found an episode of “Walton’s Mountain” on one of the Catch-Up channels on TV which I was unable to resist. When my son, who has been staying with me for a month, appeared I told him that it is one of my “guilty pleasures”. It was very popular in the 1970’s I think and depicts a family living in America in the depression. They are dirt poor allegedly, but life is idyllic. Seven or eight children, Ma and Pa and the grandparents all live together in perfect harmony. Quarrels between the children are resolved through the wise intervention of their elders, there is no trace of serious sibling rivalry, quarrels when they occur are short-lived – it’s so comforting. And such nonsense. Life just isn’t like that now. It probably never was – but the idea of the perfect family has always had great appeal.
I think that in families we are trying to aim for a “good enough” balance of happiness. This applies to being a carer/supporter as well. We are not angels. We are human beings with all our faults and failings as well as our strengths and love. We do the best we can. I think sometimes the same thing applies to dementia itself. “Living well with dementia” is not always possible although it is a popular slogan at present. “Living as well as we can manage with dementia” is possible.”
The modern family itself is not big enough or strong enough to provide all the support that it needs. But a community like ours can be. We have to look out for each other. Pick up on warning signs that all may not be well and do what we can to help. Notice and respond to the hints at unhappiness, the half-completed sentence, the facial expression, the eyes that suddenly fill with tears. Some people feel sufficiently secure in our community to ask directly for help when they need it and will choose the right person to talk to. We have the resources with our Encompass group, Clear Voices and one to one counselling services to provide the safe spaces which we need to enable us to share how we are feeling. But there may be others who have not built up enough trust and confidence to ask directly. So, we need to look out for each other.