Anne had been unwell again with cold and flu like symptoms and after a difficult night I decided to let her spend the following day in bed. I went through to check on her on a regular basis. One of the times I went to check on her, she opened her eyes and beamed with that smile of recognition. Despite feeling horrible, she still smiled a greeting of love. She cannot communicate with words anymore, but she can communicate with that special smile.
I broke down in tears. I was inconsolable. Grief is very painful!
I have said before that Anne's deterioration is not like a gradual straight line on a graph but more like a stepped decline, and sadly, after a few good months, another step has been taken.
Up until last month, she would occasionally need help with eating and drinking. She always needed encouragement to drink and sometimes would require assistance to finish what was on her plate (probably about 20% of the time). This month, this has been completely reversed!
Now, Anne needs help with feeding at least 80% of the time. Such a turnaround in such a short space of time - that is the nature of the "step function" decline of the disease.
For about a week, I found this very difficult to bear. I would invariably weep as I fed her and Anne would somehow recognise my discomfort and get watery-eyed. But life has to go on, so I took Anne to church when I was very emotionally fragile, but was so encouraged by what was said on the subject of Joy.....
"Joy is the settled assurance that God is in control of every detail of my life, and the quiet confidence that ultimately everything is going to be alright"
This is what I needed to hear. While everything may not be alright in the near future, ultimately it will. I have that settled assurance and quiet confidence.
While Anne was at the Day Centre, I attended a funeral of a friend who had succumbed to Parkinson's disease. As I sat in the church I couldn't get Anne out of my mind. I realise this may sound a bit grim but what would I want to say about Anne at her funeral, indeed, could I say anything or will someone else have to do it for me? What songs would Anne want at her funeral? It was the first time that I had that experience despite the fact that I am always thinking ahead. I guess the physical surroundings had triggered these thoughts.
As I reflect on the year, it has been another year of decline for Anne - some of these "steps" have been difficult to bear at the time, but somehow I have muddled through and got used to another loss of function, and I remain very grateful for the support we have received from family members, great friends, and of course those from Health and Social Services who care for Anne on a regular basis.
Christmas is almost upon us, and a new year beckons. and I know that there will be further challenges ahead, but with the support of others and having that settled assurance and quiet confidence, I know that I will not be alone.
And to you reading this, thank you for journeying with me this year - you are most welcome to continue with me next year.
best wishes
Gordon
