One of the features of caring for dementia patients, if you are the relative, rather than a professional, is keeping going. An alarming number of relatives (and professionals) suffer burnout; any underlying health problems are likely to be exacerbated by the stress, and the daily dealings with aggressive and truculent people can just wear you down and wear you out. I thought it might be time to share some of my tips and wrinkles for keeping yourself going. Last time in this caring role, after my mother-in-law died, we were all ill, and she was a nice person. My mother, aggressive and controlling before she even had a whiff of any form of insanity, gets more like herself by the day.
After the slight dust-up last week she continued not to speak to me; the carers answered the phone; she could be heard shouting in the background: If that’s Jane I have no need to speak to her. At the weekend she inadvertently answered the phone to me herself and was at pains to tell me, three times, that she had no close relatives. I ignored all of this rubbish and carried on as normal. Yesterday when we went I had arranged to spend as little time speaking to her as possible, so I did jobs instead. I remasticked the roofing felt on the chalet to stop it raining inside. The other half got on his high horse: Are you trying to curry favour? he wanted to know, to which I replied that I was merely protecting my investment and didn’t want to have to show potential buyers a chalet full of mouldy furniture.
And this is the first thing to note. It helps me to remember that my appalling mother is dying. This sounds dreadful but I have found that it helps my compassion if I remember that nothing is for ever. One of the advantages that healthcare professionals have over relatives is that they have seen it all before and know that the patient will die and then there will be another patient. To family members in their first encounter with the disease it feels unending, each day appears to be something freshly terrible. If you dearly love your sick family member, knowing that their suffering will not be forever helps you to make the most of each day and if you have been landed with the care of someone awful, or your loved one has awful days, it helps to remind yourself that your suffering won’t be forever either. This knowledge helps you let go of moments that would otherwise bug you.
I have always taken a cake for my mother, at the end of the visit, usually half past four, we have cake and tea and then an hour later we leave. I instituted this for two reasons: it signalled the end of the visit and made a familiar pattern so that even if distressing things had happened during the visit, such as a hospital appointment, the visit could end on a soothing and familiar note (remembering that all dementia patients are soothed and comforted by what is familiar to them). Also, at the point where she was losing weight rapidly, I knew she would eat the cake with me, even if she was refusing meals.
Yesterday I was weeding the garden at about half past three, when the carer suddenly rushed inside the house, muttering about tea time. She then brought me out a cup of tea and said my mother was enjoying the cake. She then suggested we weed a different part of the garden and as soon as we got started rushed inside again and came out and said we should do something different. It wasn’t until four, when the other half and I were on our way to the shops to fulfil a shopping list that had suddenly appeared, even though my mother refused to tell me what she needed for the previous three days, that he asked why I was in such a state. I said I was being chivvied by the carer, because I was. Back in the house, although the tea had been put away, the cut cake was conspicuously sitting on the empty coffee table. On the way out I asked the carer why she had served tea and cake early; it was. of course, because my mother had insisted on it and was trying to punish me by having cake without me. In her dementia, she had, of course, forgotten that I have coeliac disease and only eat the flour filled cake to encourage her, and suffer for it the following day. The full extent of her manipulation didn’t really strike me until this morning; she certainly had the carer running in circles. I however, did not feel bothered by it, although I did grind my teeth all night and have woken up with terrible toothache.
I rang her half an hour ago but she was very short on the phone, the district nurse was there. I had arranged this in consultation with the nurse. My mother had been complaining that doctors and nurses tend to speak to me and not to her. I think this is a legitimate complaint with many diseases – the ‘does he take sugar?’ syndrome. I keep in touch with the health professionals by email, phone and letter. If the appointment was urgent and necessary to convey information about the patent that they might forget, I’d be sure to give the information independently, in this case it was a follow-up to a change in medication and not likely to cause further changes.
The manager of the care agency has just rung me from the house; hearing the nurse had turned up early and knowing the carer on duty was inexperienced, she had popped over to the house to make sure everything was all right.
And that is the second measure which has saved my sanity, if you’re a dementia diaries regular you know I thank the day I found the care agency, who are costing an arm and a leg but not my head and I think that’s a fair swap.
The other thing that helps is treats for the carer. Make time to do your hobbies, buy yourself something, even if it’s just a chocolate bar, keep up the exercise to get the endorphins swimming around and make time for you.
Which is what I’m off to do now. It is my mother’s birthday on Saturday and I have bought a DVD and a mat to make edible icing butterflies to decorate her cake, which I have bought because last year’s cake never got eaten.
Now – how much strychnine do you think I should put in the cake before I put the icing on?
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And keeping a sense of humour – that is the other other thing that helps to keep you going on the marathon run that is dementia care. If you hit the wall, fall over laughing, it’s better than falling over crying.
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JaneLickercake.com – mostly cheerful.