During the course of a loved one’s journey with dementia, you are guaranteed to have conversations that lurch from the obscure to the upsetting. You may well be called names and sworn at one minute, and then told you are loved and cherished the next. Some days you will have to repeatedly explain who you are, or comfort your loved one when he’s crying out for his mother or another family member.
When your loved one is in care, dealing with demands to “go home” can be one of the most distressing aspects of your visits. My father had vascular dementia for about 19 years, the last nine of which he spent in care facilities, and during his early time in care he desperately wanted to leave. He had enough cognitive ability to know that he did not like the place or the people in it, and very little would appease his desire to “break out.”
We tried diversion tactics, offering favourite foods and drinks and occupying him with his preferred pastimes, but ultimately it was something that was only going to pass with time and patience. Needless to say, we were not popular when we tried to gently explain to him that he had to remain there after we left, and it was very upsetting not to have been able to help him do what he wanted to do.
Ultimately you have to recognise that you are doing the right thing, however hard that is. It doesn’t help that you may feel very guilty that you agreed to put your loved one into care, and hearing her demands to leave and her opinion of you for keeping her there can add to that guilt immensely. However, if you take what your loved one says personally, it may result in you resenting your relative or not wanting to visit her regularly—a situation that is not beneficial to either of you.
Dementia is frequently characterised by the confusion and distress that the person living with it demonstrates, and that can be mirrored by similar emotions in the caregiver. As you struggle to comprehend what your loved one says or means, or when you become hurt by remarks uttered with such feeling that they appear very real and intended even when they are not, it can seem as if you’re flailing around in the darkness of dementia with no more of an idea about what’s happening than your loved one has.
During my father’s dementia journey, he said lots of things that were uncharacteristic, from the overly emotional to the childlike; from the aggressive to that which made absolutely no sense at all. He uttered swear words that I had never heard him use before, and came out with the most unexpected remarks.
One particular incident lives long in my memory. It came when I was giving Dad a manicure one day. He always hated having his fingernails done, but due to his tendency to scratch himself to the point where he bled, it was necessary to do his nails regularly. As the usual battle ensued, with him pulling his hands away and complaining, he then suddenly called me a word that is not printable here. My mother’s face was a picture of shock, but I actually found it quite funny; clearly he did not mean it, and I doubt he even knew the gravitas of what he was saying and who he was saying it to. In a moment like that, laughter broke the uncomfortable atmosphere and relaxed Dad to the point that he thought he had just told the funniest joke in the world.
On that occasion, my experience of my father’s dementia made it very clear to me that it was the dementia talking. But do not make the mistake of assuming that everything someone living with dementia says is a result of the disease. Very often it will be, but amongst the aggression and muddled thinking can often come some very lucid moments when the person clearly knows his own mind and what he wants, or says something so tender and kind that you know it comes from the heart.
I am often asked how to cope with the verbal onslaught that can come from a loved one with dementia. My advice is positivity and humour. An upbeat attitude and an ability to laugh together as a family (never at the person with dementia) can lighten the heaviest moments and show that while dementia can do the talking, it is love that does the listening.
Beth Britton is a dementia campaigner and care consultant, writer, and blogger. As her dad had vascular dementia, she provides support and advice to those faced with similar situations; informs and educates professionals and the wider population; and aims to promote debate and create improvements in dementia care. Read Beth’s blog and follow her on Twitter and Facebook.
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Originally posted October 2012. Updated July 2015.