A Fragile Storm
My sincere thanks to all involved with making this movie and to the actors for brilliant and sensitive portrayals of the characters.
My niece has shared this movie and it is possibly the most disturbing movie I have seen in a long time. It runs for approx 9 minutes and speaks to the anguish of a relationship interrupted by Dementia. That demon in the cupboard. The elephant in the room. The movie is confronting and informative. One of the executive producers has Alzheimers. It will upset viewers and others will understand it totally.
I was in tears from the first seconds.
I have put a warning that the movie is controversial and it will question your understanding of dementia based illnesses.
Regular readers of my blog know that my father died two years ago this month as a result of having Lewy Body Dementia and my mother has Dementia Nos associated with COPD and Emphysema and is in a care facility. My niece is attempting to raise two children as a single mum, and care for her mother now diagnosed with Alzheimers.
What is the one thing our loved ones ask of us in the early stages of these dementia based illnesses? Almost universally it is – “Please do not put me in a “home”. My thoughts on my niece’s comments about making promises and guilt at not being able to keep them.
These are my thoughts drawn from my own experiences as a caregiver on my niece’s comments about making promises and guilt at not being able to keep them.
We all make the promises with the best intent and then when we are unable to keep them due to circumstances outside of our control we do feel guilt. These dementia based diseases are all about guilt.
We are never ready for the changes and often do not see them as they are subtle and can fluctuate from hour to hour day to day. That is one of the things that is emotionally exhausting about dealing with these issues.
We second guess ourselves all the time;
“What could I have done better or differently?
Why did I lose my temper? I should know better? Intellectually I understand but my heart does not. Why? Why has this happened? Why/ how did I not recognise the signs earlier? Why isn’t there more help/research/understanding/funding? Why does this push the boundaries of my beliefs system? Why am I not more patient? Why are there days when I hate everyone including myself? ”
The best and most important thing for caregivers is to understand they are not responsible for the illness or the situation and to find time out and recharge.
Acceptance of the situation and finding tools and support systems to help is vital. It won’t change the progress of the disease but it may help you cope with those changes more effectively.
Recognise that as time progresses we may have to hand over the care of our loved ones to others. For health, mental and physical, safety and financial reasons. Heather would understand that better than anyone else. This movie shows the extremes and those extremes do happen – not with all but with many cases. These diseases have an impact not only on the person with the disease but their families and support systems and no one understands another’s journey. We may empathise but we do not understand the daily pressures. Build memories while you can, record conversations in writing and on tape or video and make scrapbooks these help as anchors in the darkest hours.
Take it one day at a time and always ensure you find space for yourself and activate your support systems when you need them.
When someone says what can I do to help suggest a couple of meals that can be frozen. Help with household and garden chores and come and visit or phone and talk. Do this because people with all good intent will make offers and then find the situation too confronting.
This is a club no one asked or wanted to become a member of – but here we are. Make beautiful memories and treasure them.