“I can’t find the keys anywhere, how is that possible?” Mum asks me several times a day. Another one is: “Have you closed your window?”, every time we leave the house. The keys are quickly found in the usual spots she puts them down automatically without thinking or registering. The room I am in does not have an opening window at all, but I assure her every time that the window is shut.
Three years ago was the last time I flew to the Netherlands to visit mum, family and friends. It was a busy, fun time with several parties and a primary school reunion, creating many happy memories. At the time she also had her 83rd. birthday. She was a little annoyed that she was struggling to remember all the names of the plants and flowers in her garden, but I guess when you get to that age, you should be happy to still be physically fit enough to be able to enjoy working in your own garden.
Late last year my cousin, who keeps a close eye on mum for me when I am in Australia, which is now home for me, emailed me concerned that I should be thinking about another visit soon, because mum was confusing her, me and her daughters names badly when they looked at some old photos. “If you leave it much longer there may be a chance she will not remember who you are!”, she said…
So here I am, visiting again, making sure not to miss her 86th birthday and making the most of what time we have left together before she loses her memories altogether. My cousin and I are busy talking to her doctor and care staff and making arrangements for her future behind her back. It feels wrong, but what choice do we have? She is convinced that she is fine and does not need any help yet. I guess in some ways I do agree with her, as she is still very alert and swift to respond to the traffic when driving her car on familiar roads. She is still capable of putting in a fair effort maintaining her small and well manicured garden and we both enjoy looking at the birds she feeds every day and squirrels that like to steel some of the birds’ crumbs when no one is looking…
But…at the same time she keeps losing things around the house, convinced that the care staff is stealing from her all the time. She only trusts a very small number of familiar people she knows well, thankfully including me. Others she treats with suspicion, fear and mostly verbal aggression, occasionally raising her fist to emphesize she is serious. The memory lapses come and go with me thinking she is indeed fine at times, but then at night when tired she looks at me and tells me she finds it strange to think that she has a daughter at all… Physically she is doing very well for her age, mentally it is becoming a real concern. She functions ok when she is able to stick to her routines that have become almost compulsive. When it is disturbed she gets very upset and stressed.
There is a lot she does not understand, like why she has trouble with her tummy when she stresses, as she does not remember she has been suffering from Crohn’s disease since before I was born, probably set off by a stressful period in her life not long after she got married due to circumstances out of her control. She also has had other inflammatory issues ever since.
While making my plans and arrangements for my journey to see her I asked an internal question and the answer came in the form of a book called ‘The Grain Brain’ by Dr. David Perlmutter who describes how and why most of her issues could likely be the result of food sensitivities, with the main culprits possibly dairy and gluten. The fact that my own minor inflammatory issues eased after starting on a gluten free diet and cutting out milk convinced me even more that his theories and findings were of value. I decided to ask her doctor for some tests to see what the results would be.
After living with her now for well over a week and observing her obsession with her routines, I sadly have to make peace with the fact that she is too far gone to change… She does not understand it when I have to tell her every night again that I do not eat custard for desert any more. When drinking tea she keeps offering me biscuits and looks puzzled why I only want special gluten free ones and refuse to eat the normal ones she keeps offering. She thinks that I must be very ill not to be able to eat all those ‘healthy’ traditional things and need special bread for lunch, despite my best efforts of explaining why. She does not understand… Every morning she makes the table and places a plate for me to eat my toast that I have not had for breakfast for years. I love my goats milk yoghurt with gluten free cereal and some fresh fruit like a mandarin and/or banana added, along with a black coffee.
She cannot see that I do not need hours any more to wake up every morning and look and feel healthier than when I was in my twenties. She does not remember how badly I suffered from several allergies and was always tired and often sick with every bug that came around, while I was still eating like she does now.
It is difficult listening to the same stories every day and hearing her complain about being tired and her tummy playing up. It is difficult, but I have to be at peace with the facts and make the most of what little time we have left to enjoy our walks in nature and spend time asking all the questions I have not before that I would still like to know before she does not remember the answers.
It makes me sad to see her like this and knowing that with a few changes and additions to her diet she could possibly be free from all her old health issues as well as slow, stop or even improve her declining memory, but you cannot force her to eat things she is convinced would make her feel sick in her stomach.
I am glad however that she still remembers to place an extra plate for me even though I really need a bowl. I am glad that we are able to enjoy those little things now I am here with her, like walking in nature, playing indoor lawnbowls, cleaning the autumn leaves from her garden together, watching the nesting birds around her home and the squirrels stealing the birds bread crumbs…
I am sorry my dear Dutch friends, that this time around I will not take time to party with you, nor run around to visit everyone I have not seen for three years. Maybe we can arrange a meeting on a Sunday afternoon somewhere in a pub for a few hours, later during my stay, where everyone that wishes can come to say g’day before I head back to my duties and work in Australia. For now I intend to make the most of my time with mum. I hope that after reading my story you will understand…
With Gratitude, PollyEsther