Living here at the extra care complex, Lea Court, I am constantly reminded of how every one is different in the way they live with their Dementia. There is Lillian, probably the most loved person in the court. She has advanced Alzheimer’s but remains the sweetest most positive, most lovable woman I, and a lot of others have ever met. She loves to sing, especially, Ding Dong Bell, and chuckles when we tell her to sing something else. Puts her face up for kisses, adores her husband John her devoted carer, strokes my face when I have been away, and asks me in her soft Geordie voice ‘Whe’re you bin gannin hinny’ Her love of life lights up the room. She constantly repeats herself, worries when she can’t see John, yet somehow because she is Lillian most people have endless patince with her.
John is non verbal but a very alert and empathic carer, probably earning the minimum wage, realised that he was an extraordinarily talented artist. Not only does he now paint his wonderful pictures in the community common room but he runs painting classes- still non verbally- vastly increasing the self esteem of the residents he teaches as well as his own.
Win is cared for by her husband Peter. She won’t accept that anything is wrong with her and refuses to go to the doctor with her severe memory problems, she causes her husband a great deal of worry and concern, and they are both glad of the community and care support here. She is grumpy and lashes out and I think very very frightened as well as stubborn.
Mo, who by a lovely coincidence, I went to school with lives alone. She copes with her Dementia well and on a one to one basis is fine, but cannot cope well with lots of people so can be very withdrawn in a group. She loves the social life, especially the musical entertainment, at Lea Court and the new friends she has made and though she doesn’t talk much in groups she loves to sing in groups. We have great sessions remembering our school days.
Pat also lives alone and in her confusion often doesn’t have her keys, or gets times confused. We have to protect her from the ‘Grande Dames’ of Lea Court all in their late 80’s or early 90’s who feel they own the common room and the TV and can be very spiteful to her. But she has lots of Knights to fight for her. For all of them, being here and being part of the community here has so many benefits,
But then there is Ken, my dear friend from long before we came to live here. He was the devoted carer of his wife who has been frail for a long time and is now in a nursing home. Since she has been there he has lost the focus of his life and his Dementia has become more obvious. He roams the place waiting for taxis that usually haven’t been booked, wants to come to Meeting if he sees me waiting for a lift, doesn’t feed himself, is likely to come to our door at anytime of the day of night looking for Lin or wanting to go to Meeting. Paul is unfailingly kind to him and he sometimes falls asleep on the couch, and we cover him with a blanket and he rests. Lucy, in the way that dogs do, recognises his distress and leaps up beside him. He loves dogs and she gives him some comfort. He is safe here but has no quality of life – without Lin his life has no meaning and no anchor. He needs far more care and attention than he gets or probably can afford. His children who only live an hour away come to visit about once a month after visiting their mother and seem unconcerned about his deterioration. Their attitude seems to be that he is ‘ safe’ here and in most ways he is: But he needs more than safety. People here do their best to support him, make him meals, ensure that he has eaten, talk with him. I remember how he used to be and the fear and loss in his eyes breaks my heart.
And then there is me, but you know about me, just back from a Quaker Yearly Meeting that fed my soul and reunited me with my tribe. Only Quakers understand the power of Yearly Meeting, up to 1000 Quakers united in silence, listening to God. I’ve been going for 30 years and dread the time when I will not be able to go. It’s like a Spiritual Blood Transfusion.
I went from that experience to my other tribe, the Three Nations Dementia Working Group where we did some good work and also played hard – with a transfusion of alcohol. We do love being together people, living with Dementia and a few carers who really know what it is like at the coal face.
My abiding memory of this particular 3NWG is of me, the carer of the year, and you know who (Well some of you do) walking with muffled giggles up the hotel corridor trying our room keys on all the doors because I had forgotten my room number – with three different cards. It took a very long time. When you have seen one person with Dementia you have seen one person with Dementia.