By David Jolley
We have been meeting monthly to share thoughts on living with dementia for over three years now. A dozen (baker’s) gathered on a fine afternoon. The discussion was frank and illuminating. We shared stories which told of the damage which dementia will do to individuals and relationships. We heard too, that individuals retain many aspects of themselves, and their place in the immediate culture despite dementia. PERSON with dementia.
A brother still living and working on the family farm in Wales. His losses of competence compensated by understandings all around – and the vestiges of previous routines allowed to continue, though the hazards are acknowledged.
The question of changes and how far a partner who remains at home can continue to be welcomed and play a part in everyday life when it is no longer shared. Trusting but monitoring another regime of care. Useful to hear what others are making of it – but a solution for one may not be right for others. Living with criticism harshly expressed, while beyond capacity, hurts even if it is invalid. Staying close and regularly there is what you do.
Looking to keeping a rich life of experience going, balancing risk of an adventure against the safety of staying in familiar territory, is taxing. Working on a hunch risks disappointment, expense and despair. Ask me and I might tell you not to try it. If you do it and succeed there is a flush of triumph – overcoming the monster – not letting it run your lives. In all things people will want to do what they believe, at the time, to be in the best interests of the individual with dementia – and respectful of lessons learned in a long-term journey of shared decision making.
We heard of the care which airlines will take when they know that an individual has dementia. We wondered about the insurance implications. We got to know that what for some of us would seem to be a very stressful prospect, for others has been taken as practised routine.
Study courses – including some excellent new material on-line – are valued. One of the outcomes people find is that they do already know a lot and are doing things at least as well as others in similar circumstances.
Soccer, head injuries and dementia are again topical, in the news and helpfully drawing attention to the long-term consequences of some activities – and of the issues which face people with dementia of any cause.
We touched on the House of Lords’ Report on Intergenerational Fairness – But there is more to be made of that.
This is for real. The lives we lead.