Alzheimer’s Book Club: Somebody I Used to Know - A Memoir
In a previous Alzheimer's Book Club post, author Lisa Genova, writer of Still Alice, commented and suggested that I read Somebody I Used to Know, a memoir by Wendy Mitchell.
After I was done fangirling because an author responded to and advanced the conversation of something I wrote (insert dance party here), I placed an Amazon order and had it delivered to my house tout suite!
In addition to the fangirl moment, Genova gave us this awesome gift. This book is pretty life-changing, in my opinion. But don't take my word for it. Grab it for yourself, and let's talk about it!
Wendy Mitchell has been diagnosed with dementia. A worker of the National Health System in the United Kingdom, single mom to 2 girls, and self-described do-it-yourselfer, Mitchell takes some time to come to terms with her diagnosis and then begins employing methods for her to be as active for as long as possible, preparation for her future, and throws herself into advocating for herself and others. She also began a blog so that she could document what was happening to her. To say that I'm in awe of all this woman has done and continues to do would be, to put it mildly.
Portrayal of Alzheimer's
To be honest, I don't feel qualified to really answer this question in this particular situation. It's just not my place to discuss the portrayal of someone else's experience of dementia, so I won't. So on to the next thing!
Things I learned
Admittedly these are key takeaways for someone like me, an advocate. Wendy has a wealth of good options for coping with the disease as someone who lives with dementia, and I urge you to dive into this experience in an audio or written format to discover them.
Lead with emotion and warmth
When approaching someone who is living with dementia, leading with emotion and warmth in your tone, facial expression, and body language allows someone living with dementia to approach the conversation in the same way. You always want to provide context to the discussion without assumptions of what may or may not be remembered.
Not all days are bad days
Wendy uses a fog metaphor to describe what is happening to her. Somedays, she's in a fog the whole day. Sometimes, the fog rolls in unexpectedly, and she has designed coping mechanisms for waiting it out. (See, she's truly brilliant.) As with anything in life, the disease severity ebbs and flows. Being open and understanding to that fact may help our loved ones and community members to have a more pleasant experience.
Allow for adaptation
As we are all living with this disease, we must find ways to adapt how we live. Wendy does it with great success on a personal level. Perhaps that's where you can effect change right now. But taking broader steps, perhaps starting with the understanding that not everyone has the same mental capabilities as you do (and a little bit of No. 1 in this list), could help us in the future. Systemically things like not putting a memory care center next to a firehouse, where the loud noises can become a problem for those living there, is an example of the bare minimum.
Trust others' memories
This was something that Wendy had to come to terms with as she moved forward. I truly felt her pain on this one, as someone who is skeptical to a fault. But she had a point; in her situation, whose memories are more likely to be accurate? With millions of people who are needing to do this, perhaps what we as advocates can do is shut down nefarious actors who would take advantage.
As you can tell by the flattery and long-windedness of this post, I loved this book. It's the kind of tragically beautiful piece that truly captures the human experience. Do check it out.
And not all suggestions need to come from authors! Please let me know what book we should read next in the comments.
Which, if any, of the following most often trigger agitation in your loved one living with Alzheimer's disease?