(Editor’s Note: We welcome Kirsty to our blogging team today. I connected with Kirsty on Twitter and asked her to post a book review of You Say Goodbye and We Say Hello by Tom and Karen Brenner. You can follow Kirsty, who cares for her grandmother, on Twitter: @WandererKirsty.–Denise)
I have recently been reading You Say Goodbye and We Say Hello by Tom and Karen Brenner. They embrace the Montessori method and this great book gives us information, anecdotes, activities and advice to help us find the best path of caring for a caree who has dementia. We are told in the book that the Montessori method is based on finding people’s remaining strengths and abilities, encouraging them to learn at their own pace, in own time, with no pressure or judgement. The best way to help people with dementia is to incorporate procedural memory. This is based on muscle memory and is not as easily lost so the Brenners recommend using activities incorporating these to improve abilities.
The title of my post may seem strange, which is what I thought when I saw the chapter of the same name. But it is very well explained. The magical part of dementia is when the part of our caree we thought we may have lost reappears. The mystery being that so little is known or understood about dementia that as soon as we think we understand a situation and can handle it, it changes.
I have to admit that if I had read this book maybe even a year ago, I wouldn’t have truly understood it; it may even have made me cross (something they accept in the book). I could not/would not have believed that anything positive could come from dementia, as I was so completely tuned into the idea that dementia was “the long goodbye.” That everything would end, that nan was dying and that was it.
But from being around nan, and reading the Brenner’s book, I have learned and want to share that dementia does not need to be a long goodbye, so long as we learn new ways to say hello. Part of this process is of course saying goodbye to your pride, and sometimes privacy, but that doesn’t have to be a bad thing.
Karen and Tom tell us that this is okay, it is okay to feel negative. But we have to remember that negativity doesn’t help anyone. Some great questions they ask us to ask ourselves include: “Do you find that you sometimes feel closer to the people you love? Do you find that you are learning to live in the moment? To appreciate things you once took for granted?” The best way to avoid the negative feelings is to stay focused on the present, not the past or the journey ahead, just what is happening now. And that is how our caree with dementia is living. In the now, because that is all they have. The Brenner’s encourage us to live this way too. To pay attention, take everything in, see it instead of looking at/past it, hear it rather than listening absently. We learn through the book that dementia is not about death, it is about life.
Tom and Karen even manage to put a positive spin on that dreaded moment when our carees no longer recognise us. For us, of course, it can be truly heartbreaking and lonely, but we can make it a great opportunity to “drop the baggage.” It is like a new beginning. Which for me seems like a lovely way to think of it, and is definitely something I will be bearing in mind when that time comes.
Great ways of interacting with your caree can include (but are not limited to) anything you may have seen in my blog, music, reading and telling stories/jokes. Anything that encourages muscle use, speaking, or the ability for your caree to complete a task and feel successful. As I have previously spoken about, stories are amazing, and a great quote from the book sums up my feelings: “Their stories remind us that dementia defines a set of symptoms but it does not define a life.”
The overall message I took from this book was that WE ARE AMAZING. Not to think of ourselves as martyrs or victims to our cause. More as heroes making the most of a gift. And remember, we are not alone. We all have each other, if only we ask for the help and support we need. (This was something else Tom and Karen spoke about, it is not shameful to ask for help, it does not make you weak, you are giving the person you’ve asked to help a gift to be compassionate, and useful. And isn’t that what we all want?)
Check out: The Fisher Alzheimer’s Research Centre website and blog: http://www.alzinfo.org
The Alzheimer’s Reading Room: http://www.alzheimersreadingroom.com