September 2020

Tomorrow, 21st September, is World Alzheimer's Day and it has been 15 months since I posted my last blog about Living with Alzheimer's. It is coming up for 10 years since Anne was diagnosed with early onset Alzheimer's and it is now over 2 years since she has been in full-time care.

My previous blog indicated that Anne no longer recognised me most of the time, and I was very grateful for those rare and fleeting moments when I sensed she did.

However, since the Covid-19 pandemic has gripped the world, and the care home going into lockdown in early March of this year, it meant that instead of 3-4 weekly visits, I could only see Anne on a video call. I started out with a weekly call that usually lasted about 10-15 minutes and she would occasionally interact but these calls became shorter and less frequent as Anne didn't even look at the screen. But I persevered, more for my benefit than hers.

Then the easing of lockdown restrictions began, and in July the care home allowed visiting outside in its courtyard and so I "booked" a visit. It was a beautiful, sunny and warm day, ideal for an outside visit. As I arrived, I put on my mask and there was Anne at one end of a very long table. I was ushered to sit at the other end. I started to talk to Anne but, of course, with a mask on and a physical distance that felt much more than 2 metres, I might as well have been talking to myself. I was encouraged to lower my mask in order that Anne could see my face, but that had no effect. I also noticed that she had aged since the last time I had visited her.

From the norm of sitting beside her and holding her hand to this "new normal" was very distressing and I left shortly afterwards with my head between my hands and quietly welling up. I never repeated that experience again.

And so I went back to having short video calls with Anne, the most recent being two  days ago. The call lasted no more than 3 minutes and immediately it was finished it hit me hard as I realised there was literally no relationship anymore. That may sound harsh to some of you reading this, and I am truly sorry if that is the case.

Over the last 10 years, my relationship with Anne has gone from a wonderful marriage (some people even told us - an exemplar marriage) to becoming a carer. Then it was time for Anne to be cared for by the professionals. I remember being told that when that happened I would become a husband again, and in the early days of Anne being in full time care, that was true. But when I realised around 15 months ago that Anne no longer recognised me, being a husband again started to feel like being a widower. 

Now, I feel exactly that. While Anne is physically alive, I feel she has gone. Yes, the circumstances of the pandemic have probably accelerated the arrival of this situation but at the end of the day, grief can be very cruel.

With the increasing likelihood of the tightening of Covid-19 restrictions, I will continue with the video calls, and if and when I can visit Anne up close, I will do that too, but I am sure that the days of being a real husband have gone, as has the Anne I married and had the privilege of having and raising children.  

Anne may have gone, but thankfully, the wonderful and happy memories have not.

Yesterday morning, I was listening to my favourite radio programme called Out of Doors, and because of World Alzheimer's Day, the theme of the programme was about Dementia and the outdoors. During the programme there was an interview with a lady who had gone through the experience of losing her father to dementia. A father, who loved the outdoors and had a beautiful father-daughter relationship. After the interview was finished, one of the presenters said to his co-presenter, "that was a powerful interview". 

That was the trigger - as I lay alone in bed I sobbed and sobbed. The reality of the feelings of the previous day hit home hard as I cried. Anne has gone. 

I eventually got up, had some breakfast and I looked out the window - a new day, a new dawn. As I later walked in the hills on a glorious sunny day I gave thanks to God for bringing Anne and I together, for the most wonderful marriage and family life, for the joys, tears and many, many blessings, and for witnessing on a daily basis the smile of an angel.