So, I have been trying for months to figure out what to say. I had hoped to have some helpful words of wisdom right now on how best to support people living with dementia in a global pandemic situation, but I am afraid to say I am still lost for the words that may offer advice anywhere near as effective as I would like.
At the start of the Pandemic when everyone was in Lockdown I feel we were all in survival mode and did what we had to do in the hope that it would pass as quickly as it came.
For a person living with dementia (PWD) and their carers this is painfully tough on the ind body and spirit. Sometimes the only respite a carer gets from the 24 hour a day, 7 days a week job of keeping their loved one safe and well is a trip to the shops or a cup of tea with friends if a neighbour pops around to offer some respite. In some cases a person with dementia may live alone and not have any support at all. They would have been told that the only time they would usually have out of the house to a day centre or social activity is now cancelled indefinitely for reasons that may not store in their memory long enough to have an understanding of what is happening. To wake up every day to the news on the tv that the world is in a global pandemic and (inaccurate) multiple thousands are dying with this deadly virus, so you must not leave your house must be terrifying.
I have always promoted all of the things that a lockdown removes as the most important things to support anyone, but specifically a PWD and carers. For my understanding of how to manage a person and their overall wellness it all starts with, people, community, fresh air, fresh food, fresh, sunshine, water, exercise, mental stimulation, purpose and autonomy. When as many of these as possible are taken care of we can start on understanding the obstacles we are facing with the obstacles of limited or areas of damaged cognition. It is not even possible to do locked in a building with none of these things as we often see in some nursing homes where people with ‘advanced dementia’ are people are locked away from those with mild cognitive impairments or no impairment at all. The rapid deterioration in a person who is introduced to that environment is noted by anyone who has ever experienced them.
The world and more specifically the UK stopped taking care of the most vulnerable people in society to ‘save and protect’ the most vulnerable people in society. I have been stunned and speechless at the monumentally puzzling amounts of incongruence in everything that has been presented to us at every stage of this situation. This of course is a topic for another time and maybe a different platform?
As a Daughter, Carer, Mum, Wife, Business owner, Therapist, and Dementia Specialist I found myself uncharacteristically in a mind set of defeat for a while. I have been somewhat like a deer in the headlights. I have gone through my own personal fears of how will I keep my family safe, well and financially viable through this time. I am so grateful for everything I am blessed to have and know that the only way for us to get through it is to work together. I concluded that things were so bad for everyone, money was not even relevant and I would offer my services for free, which I did.
The next level of realisation came when I put an advert out for free home help for people living with dementia and not one person took me up on my offer. It was at this point I gave up trying to help and froze. I realised that people were so scared, I would not be able to help anyway. I had all but decided to close DemPro C.I.C and just concentrate on the equally important task of overseeing my other little business (which I was still doing anyway)
I looked away from all matters remotely linked to dementia for a few months and metaphorically put my fingers in my ears while singing La La La to block out any thought of what I could or could not do.
This morning I was up at 5am thanks to my little dog. I decided to get up and do some La La La type activities such as surf ebay, watch vegetable growing videos and basically not think about anything at all useful. Well, as you can see that failed. I honestly do not know how I landed on the DemPro blog as I was searching for something like how to plant blueberry bushes in pots 🙁 When I found myself looking at the new post button, I really had no other excuses (other than the burning blueberry bush question) than to write something and here we are. I decided writing my thought is better than closing it down and go into La La La mode again.
There is not really a conclusion to my post other than to explain to myself and anyone who may come across this why it is a blog of good but unfulfilled intentions.
As I write this I find myself reassuring my confused mind that there must be something I can do to help at this time, even if it is write a post or two so someone else can have a cuppa and a read for a few minutes.
If you are reading this, wherever you are I send you love, healing energy and virtual hugs.