March 1, 2025
Soon, I will be leaving my mom’s village to return to Canada. This experience has moved me in different ways. The up close and personal confrontation with early dementia yanked me right back into an orbit around my childhood. We all work hard to become the adult that we would like to be, and many of us this meant shaking off bits and pieces of our past, that no longer serve us in today’s day. If there is one lesson to learn from people with dementia it is living in the moment, this second. But gravity is tacky and sticky and even though I am a survivor of many hardships, I had trouble getting back into my chosen life’s orbit.
I had to pinch myself numerous times to remind myself of the fact that dementia is a disease, that blurs and magnifies the person who suffers from it; all at the same time. Most social filters are erased, so whatever happens, you can expect a reaction that is rooted in honest emotion. Yes, the person is still able to hide their real feelings, but this is merely a transparant cover-up. The real thing comes out as sarcasm and cynism. “Do not take it personally”, is the first thing those who are primary caretakers are told. And then: “Be patient; be calm; be honest; be slow.” For a quicksilver like myself, these are not easy principles to adhere to. But I have found them sound advice. Incredibly taxing. But sound.
Dementia: one of the most cruel diseases to hit families. Because it is not limited to just the person with the diagnosis. It impacts everyone around them. With shock, horror, disgust, anger and pure disbelief. On the evening of my arrival day, I said to my sister: “I don’t notice anything off.” My sister’s reply was short: “Just wait.” She was right. After the expected warm welcome in my mom’s familiar way, it all started to come apart at the seams. And my mom did not have a clue. “I am still going strong, I am not in need of any help”, she kept claiming. And, sincerely: “When I do need help, I promise to let you know.” Which, of course, is not going to happen. Because unfortunately those with dementia have little self-awareness, and no understanding of their condition. How can you tell someone that they are forgetting things, when they forget that they forget?
I have learned a lot about the brain suffering from dementia.
I learned that in the living environment of a person with dementia it is good to use contrasting colours to help distinguish things, such as a cup and a saucer. Stay away from using dark colour, because the demented brain perceives them as holes. Imaging walking on black and white tiles, thinking you can only really put your feet on the white ones. Or a black door: people with dementia are often very hesitant to walk towards them.
I have learned that talking too fast, cannot be interpreted by the demented brain. Information trickles down a lot slower than with normal people. So leaving silences between sentences works better.
I also learned that it is a bad idea to lie to a person with dementia. They tend to spot a lie from a mile! And when they catch you, a big piece of trust breaks off and you may be confronted with a very angry person, that will, from then on, watch every move you make and simply lose trust in you. I witnessed this when a caretaker and I planned to do a load of laudry. We decided to include twopull overs, because we did not believe my mom when she told us she had hand-washed them already. She was in the diningroom having lunch and we thought it was the perfect moment to do this. As if she was a hound dog hunting for a fox, she sniffed us out and appeared in the doorway to ask where the pullovers were and, with a suspicious look, trying to see what was in the washer. Because she surprised us, we kept our fingers on the start button for too long, and the child-lock was activated and the washer stalled. So there we were. Unable to show the pullover to my mom, and unable to open the washer. It ended up in a screeching confrontation until we finally managed to switch off the child-lock and take the pullovers out. Having to make a pledge to never lie to her again…
Was I true to the pledge? Not entirely. Some white lies were simply necessary to get certain things done. But I never lied so blatantly again. “Honour thou father and mother” it says in the bible, “that it may be well with thee, and thou mayest live long on the earth.” Ephesians 6:1-4. What does that mean? To remember to be respectful of our parents, so that we do not treat them as if they have no value. That is one of my own explanations. It will keep our conscience clear and, once our parents have gone to glory, have no regrets. But I am telling you, to respond wisely to episodes of screeching and resistance requires a level of self-control and awareness that is exhausting, no matter how much therapy one has done in life…
But dementia is not all darkness and trouble. I have also seen my mom flip to the kindness and love. Stroking my head softly and admiring her daughter’s wavy hair. Thanking me when I leave for my little appartment at the end of a exhausting day “Thank you for all that you are doing”. Taking my face in her hands and kissing me on the cheek. Telling me how much she will miss me when I am gone. Showing sincere surprise when I tell I will have been here for almost 3 months. Seeing her compassion for my husband, who has been left to his own devices for that long. In actual fact he has been supportive and loving and not wavering in his willingness to be a sounding board from afar. Thank God for the likes of Whatsapp and Zoom!
The most pressing issue during my stay was this: how long can my mom continue to live independently? There is no answer to that. It depends on so many factors. During my stay I have helped clean out most of the unused spaces in my childhood home. I have also had multiple appointments with all sorts of people and organisations. So my sister (my mom’s primary caretaker) and I are now well-informed on essential matters that will become relevant in the near to distant future. I have had full filling and loving moments with my mother. We had laughs, tears, anger and resistance go both ways. But in the end a lot of nice memories were made as well. And lots of pictures.
For now, we have decided that she can stay in her house a little bit longer, even though it means spending quite a bit of money and setting up a rigourous system of home care to keep it safe. No maintenance was done in the years following my father’s death quite a while ago. And that now comes with a price tag. Some think our decision is a bad one. Doing work on the house, giving our mother one more relaxed summer in her own house and garden. Throwing money in the wind. But we want to respect our mom’s adamant wish to stay ‘at home’, where everything is familiar. Where she is surrounded by loving neighbours, who always keep an eye out for her, instead of dementia sufferers who are much farther along than she is, creating a morose environment with little healthy interactions. The studios and appartments in institutions are certainly nice and at least adequate. But my mom is not ready for that. I agree with her that she is still going too strong for that.
However, staying in her house comes with certain conditions to do with optimising personal hygiene, dropping her resistance to help from nurses and cleaning ladies, substituting cooking and be okay with a meal delivery service. And maybe even with going to entertaining afternoons, where like-minded souls play games, prepare meals and have coffee together.
So that will the main course on the menu for my sister and the small army of other caretakers. Can it be done? Will the person with dementia cooperate? Will she be receptive to certain conditions? How important is independent living to her and can we reach her to strike a deal? Or are we hoping for too much?
We realise that it may be easier for us to move her to a home. But it would simply kill her spirit. She is 89. She has raised us, nursed my sick father for years on end, made our clothes and gave us all the opportunities in life that we wished for. She is a physically healthy person. Who has no frame of reference for what is going on with her. She swings from oblivion to clearheaded moments. She currently is knitting a sweater with a complicated knitting pattern. She enjoys the sun in her own garden. At this moment, we cannot take that away from her. When the disease progresses and the cognitive decline gets more pronounced, our decisions will change. But not yet.
Gratitude goes to all the generous people surrounding her. Always willing to help and assist, without expecting anything in return. You know who you are. You have our eternal thanks. Let’s all pray for a smooth ride for my mother…