I might have known the gold day off was a one off. Yesterday we had the most difficult day at my mother’s for a long time.
We began by being ten minutes late for lunch. I had warned my mother, knowing that she just can’t cope with anything unexpected. When we went to the garage to top up with petrol the front tyre with the slow puncture just wasn’t inflating right, so before we went to get what turned out to be two new tyres, I popped in to our house to pick up the ice cream I’d left in the freezer and rang her to explain we’d be a bit late.
It became apparent within five minutes of being there that nothing all day had been the way it should be. The oxygen machine was delivering the wrong temperature of air at the wrong speed, all her carers were no good and not helping. The lazy idle good-for-nothings were sitting reading books. The gas fire was doing the wrong colour flames. The cat wouldn’t be nursed. Her shoes were hard. Before I came she didn’t have enough food, now there was too much, how on earth was she going to eat it all, what did she think I was, could I not look and see how thin she was? And so on.
Eventually after an hour and a half of solid complaint, I asked the carer if she had the card leaflet that the care agency had originally supplied enumerating the tasks they could undertake. My mother had seen this leaflet when she engaged the agency and I had in the intervening fifteen months frequently reminded my mother of all the things that the carers could do, including buzzing off to their sitting room to get out of her way when she wanted them to do so.
I should have anticipated that providing someone demented with a list of things that could have been done for them on a day when everything was wrong to begin with was, perhaps, a major mistake. After fifteen minutes of good Godding I escaped to do the gardening (………..another thing they could have been doing that I am paying them for! Dear God they have hardly set foot out there ever!) Twenty minutes later my other half joined me, mainly to stand in the garage and get it off his chest. Currently he has a low tolerance of everything and is not good at the soft answer that turneth away wrath. In fact he has more experience of being the one doing the swearing. So I gave him five minutes of my tired droopy ears in the garage and, back in the garden, reminded him he was dealing with someone with only two thirds (and counting down) of a brain. Returning to the garage to look for wire to restrain the roses I reminded myself that he too in his enthusiasm to relieve the breweries single handedly of their output, has almost certainly knocked the edges off his thinking apparatus, if not actually bored holes in the middle of it. Then I laughed slightly maniacally and out loud asked my dead father to help me spot the pliers. He didn’t, so the sanest of three poor choices went back out with a reel of wire to try and bend it with her fingers.
Unfortunately we finished the gardening and then my other half got the patio set out so my mother could sit and stew in the sunshine for a change, while she instructs the carers in weight lifting, juggling and playing a one-woman band while singing in a cheerful manner to time the boiling of eggs, or indeed anything else that takes her fancy and interpretation from the list some fool delivered into her jabbing and pointy little fingers.
So went back in and had an exhausting hour of tea, cake and invective. I managed to apologise to the carer, sotto voce, and instruct her to get extra help if things turned nasty, or, to be more precise, nastier than they were and that I would pay.
At this point I was glad that the equity release mortgage I had arranged had a monthly draw down facility, not just because I am only paying interest on the amount I have actually drawn down but because of the flexibility to draw down more in a month where it is needed. Well I believe I have. A lady from the mortgage lender will telephone me every month prior to initiating the credit transfer to check my mother’s status. I find this built-in flexibility and reminder very helpful. I do not know in the detail what lies in store for my mother or what I will be required to provide for her, or, most of all, how long I will be required to do so. What I determined at the outset, given the experience of caring for my mother-in law, to use all available resources to help everyone involved, still holds good and has been my guiding principle throughout.
Three things are certain with dementia care. If you have a good day or a gold day off, a bad day or a day of dross will surely follow. The first certainty is to take time off and make every second of it count.
The second certainty is that the unpredictable nature of the disease may find you needing extra help or resources at any stage. You need to research all avenues of help when you are doing your initial investigations and keep all possibilities, financial, practical and medical on the back burner, just in case. Those leaflets you are inundated with initially may turn out to he helpful after all.
The third certainty is that the disease will affect all family and friends who come into contact with it, so you have to make plans to care for all the people from the beginning. The better the ongoing care and rest, time off and information for the associated sufferers, the better the quality of care, sympathy and love left over for the person with the disease. The end of dementia is not decorated with winners but the more survivors you can get across the finishing line the better; managing to do that is an on-going process throughout the disease.
As always, being the carer, the bottom line is gratitude that it isn’t you with the disease. Having said which I fell asleep in the car, and again in front of the television, got up at six and went back to bed for another three hours. The cost of remaining cheerful and kind in the face of constant aggression and complaint is utter exhaustion. I felt as if I had paid for the gold by sifting though the dross, gram by painstaking gram.
So I rang this morning braced for something awful and she was as happy as Larry and planning to go out in the lovely sunshine and see all the lovely flowers I’d planted. Lovely.
JaneLaverick.com – well — der.