What is the memory loss I bewail in this early stage of dementia?
How bad can my memory be when I’m writing this? I completed a book over the past 5 years; aced the Mini-Mental State Exam, a memory test used to see how well someone is embedded in reality; recognize and know the names of the people I love most, even though I often mix up my grandsons Kanye’s and Dante’s homonymic appellations. So what is it about my memory that stresses me, makes me anxious and sometimes depressed, and drains me of energy by noon?
Take a seat by that fly on the wall and watch how my day goes: I get up, stumble upstairs to the kitchen, switch on the kettle. My favorite coffee mug is not in the cupboard. The three-step route to the sink or dishwasher takes me past the window. The driveway is wet, the bark mulch I put down is two shades darker from the rain. Is that a green patch where I sowed the ground cover the other day? Outside the back door the quail are waiting to be fed. As I pour the seeds in the stone circle we have made to somewhat contain the mess, I get a whiff of grain. I’m hungry. Oh, yes, coffee! I go inside, look in the cupboard for my coffee mug.
Sometimes I get my coffee made by the time Peter gets out of the shower. That is, if I managed to get past the distractions: the dishwasher must be unpacked, my morning medications taken, a potplant watered. Once Peter arrives, he reboils the by-now cooled water and points me in the right direction every time I get off track. Soon the smell of coffee pervades the kitchen. We sit on the back stoep watching the quail, the ring neck doves, the Asian doves, the sparrows, the blue bird. Peter lures the squirrel onto the stoep with a nut from his pocket. While he lingers afterwards to check his iPad for mail or news, I go downstairs to shower. First, I set out my clothes. I notice an item that has to be washed. I quickly put in a load. While passing the storage room, I might as well get out more toilet paper rolls. On the craft table lie photos of the grandkids to go on the notice board. I try out different arrangements for the montage.
All this side-tracking would be fine if it weren’t for a nagging sense that I was supposed to be doing a different and more crucial task. As soon as that feeling bubbles to the top, I involuntarily do this thing with my hands while trying to remember, wringing or shaking them as I have seen people with Asperger’s do. Peter’s shout from upstairs that we have to leave for our appointment in half-an-hour solves the mystery. I hurry to the shower. Oh no, I put the towels in the wash, got to get a new one from the upstairs bathroom. And so on.
The pattern I describe is characteristic of the early stages of dementia. Suddenly you—formerly a superwoman who raised kids, had a fulltime teaching and admin job, and cooked dinner almost every night for forty-something years—have the attention span of an ant. While I was still at Gender Studies, I had senior moments at work and home: a forgotten meeting, lost keys, broccoli transformed to little black fossil trees on the stove. By the time I was diagnosed with microvascular disease, these forgettings had worsened to a point where I was no longer being able to follow my lesson plan, forgot to cook a casserole that I had made the night before for Easter brunch until we all sat down at the table, and an unmooring of my spatial orientation that caused me to get lost all the time. The last straw was when I bumped into a parked car: I voluntarily ceded my driver’s license. It was really only by my second year or retirement that an attention deficit disorder of elephantine (ha!) proportions started to bedevil my productivity and sap my emotional energy. When I am on my own—at my computer writing, for example—I can still focus as long as I stay put. As long as I don’t have to go the bathroom or get a second cup of coffee, in which case all bets are off. It seems that as soon as I go outside my own head into the realm of things and people, my thoughts lurch out of control like Plato’s chariot: “One of the horses is noble and of noble breed, but the other quite the opposite in breed and character. Therefore in our case the driving is necessarily difficult and troublesome.” (Phaedrus, 246b).
I cannot focus: not on a task, not on a conversation, sometimes not even on a beloved person.
This morning I went to breakfast with two of my BFFs, Kirstin and Susan, each of whom were only in first grade by the time I finished high school and whom I met during my belated pursuit of graduate school at the University of Utah. I was present at both their weddings, saw their children—of whom I am a godmother—when they were only hours old, and spent many cherished hours over the years with them and their families. Lately when I see them, I get into a panic because I momentarily don’t remember which of the two boys and two girls belongs to which family. For now, I still manage to rehearse the kids’ names and their familial categories before my confusion becomes evident. During breakfast this morning, I found myself lost in the conversation several times—could not remember what we were speaking about. For now, I still manage to infer the topic by listening quietly for a while. I know the day will come when I have to ask.
The memory loss I bewail is not the one we usually associate with Alzheimer’s and other dementias: I have not, so far, forgotten my name. I recognize the people I love. I remember my childhood on the farm. I still have the soft-focus memory celebrated on refrigerator magnets: “A memory is a photograph taken by the heart to make a special moment last forever.” The memory loss I bewail is of a far more ordinary kind: the ability to link one second of the day to the next in a chain that makes time comprehensible and controllable. The lack of continuity between the moments of the present leads to a sense of disconnection with my self that causes stress and anxiety. Who is this person flailing through her day?
My present me is a different me from before. I miss the me who used to be able to make things happen. The me who used to be in charge of, at the very least, my self.
May 3, 2016 @ 5:21 am
Xxx
May 3, 2016 @ 5:05 pm
Lovies back to you, my always supportive friend.
May 3, 2016 @ 1:41 pm
Dear Gerda, your humour is amazing. My husband has Alzheimers and I struggle with the loss of my partner.
May 3, 2016 @ 5:04 pm
So sorry you are living through this disease with your husband. I think that a spouse’s dementia can often be harder on their partner than on themselves: while it is hard to feel myself going backwards, I can sometimes see from my husband’s expression that it is very, very hard for him too. He is the main booster of humor in our household! Thanks for being in touch and all the best with the wonderful care and love you are giving in such difficult circumstances. I admire you.
May 3, 2016 @ 5:23 pm
What an incredible site. The photos are stunning, the writing amazing. What you are doing for the world with your gifts (both of you) is so valuable. Thank you.
May 3, 2016 @ 5:29 pm
Dearest Lynne, you have such a gift of observing things in my life and through your beautiful words making them seem much better than they probably are in real life. Love you, dearest friend.
May 4, 2016 @ 6:24 am
The website is beautiful. Thank you for sharing this blog–the insights, the gorgeous writing.
May 4, 2016 @ 7:39 am
Dear, dear Sherri, Your response means so much to me, as does our long recognition of shared soulness in each other.
May 5, 2016 @ 11:33 am
My dearest angel, so here you give expression to your daily frustrations that I see all the time. Your wringing of hands, your impatience with yourself and your stuggle with activities every day tear at my soul. But we have so much fun together and your memory loss is a great excuse for me when I forget to tell you something … “But remember I told you yesterday that …”. I hear you calling for me to help you find the blog page which you have forgotten and I am on my way.
May 5, 2016 @ 2:07 pm
My dearest love, your comment means so much to me, I’m going to write a new post about it. Watch this spot for it–soon, I hope. Love you. Where are the emoticons when I need them!
May 5, 2016 @ 11:48 pm
Dear Gerda, your writing is amazing! You make the realities of growing older so precious and real. Eventually we all start ‘dementing’, whether physically, mentally, diagnosed as some specific condition, or just normally aging and it is hard to live with the realities of getting older. Did all our parents find it so hard,or did they not talk about it, or were we not aware enough to listen ?
Fond love.
May 9, 2016 @ 10:08 am
Dearest Elza, Thanks so much for your kind and encouraging words. Yes, no one escapes old age–the only alternative is dying young, and who wants to miss a single day of life while it is still overwhelmingly beautiful? I often think of our parents and grandparents. I did see my mother often having a very hard tiime with her dementia, but she nevertheless remained extremely loving and always lit up when I saw her. Since so much of my life with her was after we emigrated, her voice when she answered the phone is one of my most precious memories: when I told her it was me, her whole voice beamed delight and surprise, as if i had just stepped into her room. I did not, of course, appreciate even a splinter of the cross she was carrying. I’m afraid that’s the way life goes–our parents give to us, and we give to our kids, who will also “get it” only when they give to their children in turn. Thanks, as always, for your insightprovoking thoughts. Love you lots and lots.
May 6, 2016 @ 9:35 am
So enjoy reading about you but wish so much you didn’t have to go through it all. Thank you so much for sharing your experiences and I wish you all the very best. Often think of you and Peter and the fun times we had together.
May 9, 2016 @ 10:02 am
Dear Vicki, thanks so much for your wonderful support and decades of friendship–your are right about the fun times we’ve had. I remember so many dinners at your house and laughter with your family. I am grateful that I am still able to share my experiences. Your thoughts and good wishes mean so much to you. I wish you and yours all the best you imagine for yourselves. Lots of love.
May 8, 2016 @ 10:01 am
Dear Gerda, this is such a wonderful thing you are doing for those suffering from Dementia and those who will be heading that way. Also for those who care for them. As you and Peter’s South African family we have experienced your incredibly fine qualities which we hope and pray will endure for a long time yet. We will always love you, Peter and your wonderful family who have meant so much to us and many other people.
Please remember that! Cliff and Ria
‘Ek sien haar wen!’ Our Afrikaans High School’s Motto which means ‘ I see her winning’
May 9, 2016 @ 9:38 am
Dearest Cliff and Ria, your support is, as always, such a “riem onder my hart.” Thanks for your kind and loving words and good wishes. I so appreciate your expression of your love for me and our family–if there are two people in the world whose love I don’t doubt, it is you and Cliff. You show love to us and other people every day of your lives. Dankie ook vir die Affie leuse: it describes you too, as well as my classmates with whom I was reunited last year. Love you lots and lots.