Dementia carer Linda Harman reveals how two family weddings have helped remind her of the importance of continuing to include her mother in events, as her enjoyment felt on the day will always be remembered, even if the day itself becomes a distant memory
This year has been a year of weddings in our family as our two eldest children have married within five months of each other. Along with the customary preparations, a regular topic of discussion has been how to include Grandma. As my mother is now in the last stages of dementia, this required planning and lots of support.
In fact, the five months between the two events highlighted the journey that we are on, making it obvious to many family members and friends. Whilst shocking to some, I think that it is a good thing that people have had the opportunity to observe, as all carers themselves require support and can only get this if the people around them have some understanding.
As the first wedding approached we organised transport and a carer to attend the event with my mother so that as Mother of the Groom, and later in the year as Mother of the Bride, I could, for the most part, enjoy the celebration and fulfil my roles for my children. She came for the ceremony and first part of each of the wedding receptions. At the first wedding she was relaxed and thoroughly enjoyed seeing relatives and friends. She smiled a lot and hugged people, she revelled in being the centre of attention (alongside the bride and groom of course) for the time that she was there, despite being unable to join in the conversations. When the car arrived to take her home, she went happily at first, but did become distressed during the journey, as she began to comprehend that she was being parted from us all.
Between the two family events she started to become distressed more often, objecting to personal care, and sleeping more. Just two weeks before the second wedding she suffered an unfortunate and serious fall that decreased her mobility. We decided that she would come anyway, in a wheelchair this time. The carer was again employed, along with a larger taxi to accommodate the wheelchair. Mother insisted on struggling to her feet for every hymn during the ceremony and watched proceedings intently. We had placed her carefully in the church so that she would have a good view. We did have two outbursts of angry frustration during which we removed Mother from the chaos of the party into a quiet area to recover her equilibrium. She enjoyed sips of champagne along with the rest of us, and ate strawberries dipped in chocolate – dementia doesn’t decrease the desire for a good dessert!
Keeping someone who is living with dementia connected to the world, family and friends is a very important part of living well with the disease. Some question the validity of the effort given that it is unlikely to be remembered nor the special arrangements noticed. For me it is all very worthwhile. I have learned to enter Mother’s world, to repeat information patiently and use every sense to communicate; the texture of the lace on the bride’s dress and the hessian decorations, the scent of the flowers, the sound of singing and taste of chocolate and champagne all combine to communicate that this is a special day and you are part of it.
As the journey progresses, all that we can do for our loved ones is to continue to strive to bring moments of happiness and hope that the feelings of being cared for permeate the fog of dementia.