The Off-sider, generally known as Dad, sits with Dorey, holding her hand and sometimes singing. Since Dorey fell, was hospitalised and then moved into care seven months ago the song has always been “How much do I love you, I’ll tell you know lies, How deep is the ocean, How high is the sky, How far would I travel to be there where you are…..” and so it goes. He feels no embarrassment and frankly, by now, I’m over it too.
Each day he struggles to get dressed, to put on his braces, bend over to put on his socks and a special effort to tie up his laces. His breath is fast and shallow, his skin is pale, blue at the toes, puffy hands. Every step is a challenge as he leans into the wheelie-walker to make the daily trip to see the love of his life.
The Off-sider is cleaning out his stuff. He has cut a bit out of the local paper to let me know where he wants the furniture to go. He is sorting through the old photographs, throwing away bits that no longer have meaning, tearing up diaries and for all intents and purposes getting ready to die. He tells Dorey he has been talking to my deceased brother in his dreams and that Dave is asking how she is. He is reading the stories in the Watchtower that two dedicated women have left for him every month for the past 11 years. He has no religion, no hope of eternity or idea of any form of hereafter. The Off-sider has been living with kidney failure for about 15 years. Every report says it is just amazing he has survived this long. His focus to survive has been Dorey.
To the exclusion of all else this has been an amazing love.
It’s only been a couple of weeks of volunteering in the nursing home and already a new understanding of aged people has occurred. When the gradual loss of self comes with Alzheimers, as a daughter it’s difficult to determine where the healthy, fully functioning person became just that little bit more eroded, a little more dependent, a little less individual. The greyness takes over and you don’t even notice except in the need to be closer, more available and then to a point where it’s impossible to move away and their life takes over your life and you both get lost.
I think back to my days in child protection when the ability to just live life was often shadowed by “a bad case”, my next court appearance, the report that had to be written and more tragically the perception that ‘out there’ were so many victims and equally so many perpetrators. The role becomes the reality and along with it the politics, the attitudes and a lessening ability to just be self. So it is with Alzheimers.
I’ve done the fire walk, a speeded up version of manual handling and this week I’m learning how to wash my hands. All valuable lessons! I’ve called bingo, hoy, refereed bowling conflicts, mistakenly bestowed a birthday on the undeserving and pushed numerous wheelchairs into solid objects. I’ve listened to big hearted performers sing war songs with voices that are probably best suited to the shower but appreciated nonetheless.
Initially a little nervous of “one on one” activities I quickly discovered this can prove to be my highlight of the day. The person and their story is almost always reflected in numerous photographs, cards, books, a mobile phone or the wedding photos pictured in a handmade quilt. The women who have the ability to be social and joke around are fun to be with but the one’s who are now relatively isolated by disability or pain almost without exception will talk about her family. She will tell me all about the son or daughter who visits every week, the one who “can’t make it as much because she is so busy” and the friends who still occasionally drop by to catch up. The lucky ones go out for coffee or lunch and the lonely ones sleep. Some will tell me how grateful they are to have a failing body instead of a failing mind but some will say they are still not sure.
Back in the locked ward where Dorey and the Off-sider talk about what day it is, why time goes so slowly and where the latest bag of licorice allsorts came from conversations don’t happen because the ability is gone. What does happen is the daily appearance of wives and husbands who come to feed their partner, sit and hold their hand for a while and talk to each other about how life used to be.