It’s 3.30 am in the morning and I am adding to a post I drafted last night: 

I received some sad news yesterday afternoon that Maureen’s Uncle Dennis had passed away.  His death was not unexpected as he was in his 90’s, and had a number of health related complications, including Alzheimer’s.  Clarice his wife said: ‘I wouldn’t tell Maureen if I were you’.  Her comments suddenly struck a chord with me, and helped me to see: the only way you can possibly understand dementia is to live alongside it.

Dennis was no ordinary uncle to Maureen: he was special.  When first married Maureen, and her husband, rented a room in her aunty and uncle’s house.  They named their daughter Denise after him.  In those days when Dennis came home from work the first thing he did was to take Denise from her cot to nurse her in the lounge. Even in the latter stages of his life Dennis loved to see Maureen, and always demanded an affectionate kiss.

Maureen hasn’t even grasped that Dennis had been in a Care Home for the last few months.  We visited him once, and Maureen was terrified that she was going to be left at his new abode.  When we have visited Clarice in the last few weeks Maureen hasn’t been sure where Dennis was.  It may well be a question of out of sight out of mind. 

Clarice understands the need not to give Maureen any bad news: all it does is cause upset. This may well be difficult to grasp for those who have only ever viewed this journey from the safety of their own homes.

Supplementary passages:

At 8pm last night Maureen said she was worn out, and went to bed.  I decided to watch some T V, and turned in around 10 pm.  I saw that she was sleeping peacefully and took to the spare room to avoid disturbing her peace.  When she got up at 3 am this morning I promptly told her where I was, and got an unfavourable reply.  She has consequently removed some items of bedding from ‘her bedroom’ because ‘they smell’ and shut the door.  I will not risk going back to bed until the coast is clear.

Clarice is unlikely to ever read this blog but there are some things I need to say to her. I  want to thank her for the support she has always offered us on our journey with dementia.  Even when she been at the point of exhaustion, many times in the last few years, her support to us has been immense.

Clarice’s willingness to share her long journey has been so helpful to me as a Care Partner.  To have an artisan around the corner has helped me to cope with the challenges here on many a day.   It takes someone who has travelled this path to understand dementia: you don’t quite ‘get it’ from dabbling, books or courses.

I hope I am able to squeeze a few moments with Clarice in the next few days: to show my gratitude, and pay my respects to a very generous woman.  Her prayers for the last few months have now been answered:  Dennis is at peace, and free from his nightmare of dementia.

Oh dear it’s going to be one of those days.  I’ve just tried to put the record straight about last night, to be greeted with: ‘You don’t usually sleep with me do you?  I thought you’d gone to town’.