I didn’t sleep well last night, in fact I’ve barely slept at all, strange night, waking nightmares, hard to explain, you are awake yet the nightmares are happening, you can’t stop them, you are just stuck in them, night terrors that happen when you are awake are not fun, night terrors when you are asleep are hard enough to deal with but when you are awake and they happen and you can’t get your brain to stop or shut off its horrible and you just want the night to end, you try to bargain with your brain all to no avail, it is somewhere where you can’t reach it. Sounds crazy right? This is dementia, this is what you don’t see, being trapped with this brain that you have no control over. We grow up being taught to control our emotion, control our thoughts, our actions, but somehow at times, randomly and most often for me at night, I lose my ability to do any of those things, my brain has taken full control of what is happening and its like being on the outside watching and not being able to turn away. Maybe thats what some people liken to hallucinations I am not sure. What ever you call it whatever it is, it means that today will have to be low key because although I feel alert and ok at the moment. I know at any moment the fatigue will set in, the brain fog will take over, good sleep is vital to good days here in Dementia Land. I hope it allows me to get through my specialist appointment without too much fumbling. Not the start to the week I was hoping for but I will surely make the best of the week just the same.
So often I think about how I would like to have a partner through this journey, my husband was spared this, he was always so good being by my side when I was sick, many times he would get a message via radio calls when he was in the bush, that I had been rushed to the clinic via ambulance, ( we did not have a hospital where I lived) he somehow could get out of the bush and be there in an instant, one time I was sent to Jasper hospital where they ascertained I had a stroke and they needed to send me to the hospital in Edmonton, he somehow got to Jasper ( an hour from our home) as they loaded me into the ambulance, he had a very calming effect on me always, he could calm my fears with the touch of his hand, and the sound of his voice. The rough though logger (faller) by profession, had such a gentleness about him when it came to me. I believe my dementia had started way back then, but of course I was not diagnosed until 10 years after he had passed away. We were too young to have our lives interrupted, but we don’t always get a say, none the less, as often as I feel like I would like to have a companion to share life with, I also much of the time feel like I am grateful that I have spared anyone being with me to watch me as I fade away, although at times I feel more vibrant than I ever did, just in different ways, because life is so very different now. I am comfortable being me.
I think about all the people who have come and gone in my life, some have passed away, others have just drifted into different things, but regardless of if they are in my life today or not I am thankful for each one of them, and I always say if you can’t stay its ok, some people come and go and thats ok too. I have learnt much from each person, each friendship has taught me much, helped me grow. My life is so different now since my diagnosis that I understand that many of the people in my life prior to or even for a time after diagnosis can no longer stay in a relationship, their lives are different than mine now, and I understand, I always hope that they will be happy in life, and when I think of them I don’t think of them in the context of what is no longer there but rather in the context of being grateful for the time they were there. Life is ever changing.
Yesterday I wrote about many crisis we face here and I believe in many other countries. I think about how and when we broke down as a society, I believe although woman’s rights were so needed that perhaps the pendulum swung to far and that perhaps if we had recognized and paid women fairly for the enormous role they played in society, and allowed them and actually men as well the opportunity to be home, to raise the families, to help in the schools, running lunch programs etc. after school programs, our society would have faired much better, they should have been paid a fair wage, our population is decreasing because the family unit cannot afford more children than the 2 which is the standard today, we have a food shortage which need not be, someone used to be home to do all those important jobs. Doesn’t have to be the woman, but not having it has done a great disservice to us all. Not everyone wants to be or should have to be home, but if paid fairly for the role they play by being there I believe many more would. Childcare would then not be the factor it is today, children are being raised by everyone other than the parents, they spend more time from very young ages in the care of others, at one time you were home until 5 at which time you went to kindergarten, you learnt a lot in those first 5 years of life, and it was also the corner stone of how you build your connection to your family unit, many life skills and lessons came at that time. The developmental period was so important. I understand that no everyone agrees with me, I don’t expect them too, and no I don’t think we have to roll the clock back, but we can take some of those very important elements and put them into use to take us forward in a better manner. So often money, power, drive things, and both of those things if not used in the right way do a lot of harm, and just because one has money or power does not ensure that they will do the right thing or that they are good and decent people. Often they are driven by greed, yet if used properly and for the good of all, money and power can bring about more without the need for greed to drive decisions that help very few instead of the many. Nothing changes if nothing changes.
I hope you all strive for a great week filled with peacefulness, joy and happiness.