This is one of the saddest books I’ve ever read. That’s not to say it isn’t good, it is. But it is also pretty unrelentingly sad.
Sally Magnusson, daughter of the well-known writer and TV personality, Magnus Magnusson, writes both her mother’s life story and the story of the mother’s descent into dementia. Along the way, she also writes an account of what is currently known about dementia and Alzheimer’s as well as offering a critique of the care options available.
It was incredibly moving and there was so much I recognised as my own mother has dementia but she is not yet as bad as Mamie became before she died. You’d think it would be obvious that I’d find it hard to read but it caught me off-guard. Sally writes so movingly, I found myself experiencing my own sense of sadness and loss, vicariously through her and this made me realise that, for the most part (and for very good reasons), I don’t regularly examine or even allow myself to experience my sadness over mum’s decline.
This might sound unfeeling but I’d be not much practical use to my mum as a sobbing wreck so mostly we just get on with stuff and I don’t dwell too much on how much she is drifting away from the person she was and how much I miss the mum she was to me. I’m sure these psychological birds will come home to roost at some point, I will have to grieve sometime.
So this book snuck in under my radar. I admit I only skimmed the final few chapters, I couldn’t bear to read what might lie ahead for us. But I read enough to know how Mamie died and what choices the family made about her care. Sally is brilliant at explaining the complex dynamics at work over every decision but if I had one criticism of the book it would be this: I felt they had it easier than many people. I know it’s unfair to compare one family’s hardship against another family’s but there were a number of factors for the Magnusson family that, in my view, made it ‘easier’ than for others. They had the choice to keep her at home within the family and whilst that is harder (but only in some ways) than putting a loved one into care, at least they had the power to make that choice. Many people do not. And it is also very hard to put a loved one into care and then worry incessantly about whether they are safe, settled and as well-cared as you’d like them be. Secondly there were four siblings to share the load which had to help. Undeniably they all had their own major life issues going on concurrently but don’t we all? I don’t know if Sally was just being extremely generous to her siblings (and who is to say, she may have been) but their story seems devoid of the rancour and fall out that can so easily occur when the care of an elderly parent falls unevenly on one or more sibling. I felt at times like I’d been given a insider pass to a rather glorious, golden, almost Dickensian extended family full of songs, japes and jolly traditions.
I don’t mean to be unkind, I’m sure the Magnusson family are every bit as lovely as she described them but the point I am making is that in many families dementia can be the final straw on already strained relationships. Not everyone inhabits a golden world where marriages are in tact, siblings are in harmony and where elderly but competent spinster aunts can ‘live in’ long-term (and what a long extra period of care than gave them). Plus not everyone can keep their loved one in their own home. The slight sense that any other choice would be disloyal or unloving left me feeling uneasy.
Decisions taken on behalf of vulnerable people are never straight-forward or easy. There is no better way through only the ‘best way through’ for each individual case and when relatives are doing the best they can with the hand they’ve been dealt then it’s not for us to make a judgement. Dementia is hard enough without adding any sense of failure to someone’s already burdened shoulders.
Would I recommend it? It depends what you are looking for. If you are looking for a scientific account, it’s not fully that. If you are looking for tips and suggestions for living well with dementia, it’s not either.If you like reading about other people’s lives then this is for you. If you want someone help you understand just how sad and devastating it is lose someone you love to dementia, then this is book for you (even if you already know that from insider experience) It’s not upbeat and cheerful but it is very interesting and very well written.