Dementia and feeling useless

Until Parkinson’s disease made so many things impossible, Husband was extremely good at fixing things around the farm. He was also very good at fixing things in the context of an argument – a gentle man, a practical man, a peace-maker, and a man with very good calf muscles!

Even though Husband had already been diagnosed with PD, I continued to work part-time at the local university and do the school run of dropping off/picking up Son from high school. I didn’t become nervous about leaving Husband alone until I came home one day to find him lying face-down in the vegetable patch. I didn’t become nervous until Husband tried to show me how to connect an imaginary electrical cord into a water tank.  I didn’t become nervous until Husband thought a team of people were cutting down his favorite tree.  I didn’t become nervous until Son said Husband, who had stopped driving, had taken off in the car and Son had to follow him in the old ute to make sure he was okay (a hair-raising experience after which we took the keys out of the car). I didn’t become nervous until Husband was unable to get himself up out of bed to go to the toilet, unable to open a jar of Vegemite, unable to understand a movie, unable to laugh, unable to squeeze my hand, hold his coffee cup without spilling it,  go to sleep,  wake up,  know what day it was.

One of the most difficult things about having any sort of incapacitating illness is feeling useless. That’s why it was so wonderful the other week when Son brought Husband home from the nursing lodge specifically to help us settle an argument with each other. It must have given Husband such a thrill because he keeps mentioning it. This may well be why he wants to revisit various situations in his past life story, in order to ‘fix’ them. I tread a fine line here between real and surreal, past and present, resolvable and not, but, as Husband has always been so adept at right-side-upping the upside-down, I am willing to embrace fiction as a way of reassuring him.

Okay, back to the situation of feeling useless, one way of making someone feel useful is to ask questions. Who do I order the kerosene for the Aga from? What do we do if the rabbit problem gets worse? Should I get some gravel for the driveway potholes now or wait until it stops raining? What should we do about the shed that is falling down?

Husband always says he will come out and help. At first I used to say things like, how the hell can you help when you can’t even bloody walk? Now I say, okay, that is a great idea. Sometimes he says bizarre things like how lonely it is driving home by himself. Sometimes he asks where his mother is and is she okay.

If someone/anyone fixes something/anything, it proves that they are useful. And useful people are thanked all the time. Okay, so how often do you think residents in a nursing homes are thanked for anything? What if staff and visitors were encouraged to ask questions of the person with dementia? What if this same person were asked for advice, for an opinion, a weather prediction – anything?

[This is a work in progress so any feedback appreciated].