|Aren't they beautiful|
It's said there are many stages of grief with Alzheimer's disease for the individuals themselves and those who love and care for them. A complex combination of loss and frustration, of pain both experienced and then forgotten, of joyful flashes of normal and gut wrenching reminders of what has gone. If you have experienced it, I need say no more.
What I have recently learned is that some of that grief is awakened too when external events highlight what has changed. For us it was a family wedding and the realisation that my Mum was not well enough to go.
We discussed it, explored the options, tortured ourselves with what ifs and finally accepted it would not work. It would have caused her huge distress and confusion. But the truth is it caused us huge distress to not include her. On the day she was much in our hearts and in our shared stories; we cried for her absence.
But then we made a plan. We took the wedding to her in her new home, her care home. I searched for a dress to help her feel special and she did. The care staff were up for it, the family were delighted to do it and so wedding number two happened. The kilts were donned ( even by the Cumbrian great grandsons!) the dresses unpacked, cakes and bubbly purchased and we took the wedding to her.
We had told her we were coming but the memory slipped past. The care staff got her ready, cajoled her into a new dress, did her hair, put on some make up and finally persuaded her she could do it. She looked absolutely beautiful but never more so when she saw us all arrive. The joy on her face as she saw them take their vows was simply wonderful to witness. Yes tears were shed but on this occasion they were of real happiness too that she was there and sharing it with us all. We cut cakes, vows were read, poems performed, toasts made and we even had a first dance. It not only lit up her world but those of her friends and carers too. Stories of weddings were shared, memories awoken, hands were grasped as connections across age groups were formed. It was so important to us all that we could make her part of the celebration but perhaps what we didn't expect was that we would enjoy it so much as well.
It's a strange language we use around care, isn't it. We talk of "putting people in a home." What a reductive way to talk about the need for care. And so our attitudes are shaped. Care homes become a bit scary in our minds, visits there dreaded; they are somehow detached from the communities they inhabit. Is it fears for our own future that cause us to turn away? We rightly express outrage when care homes provide bad care but that's what happens when we turn our backs on the vulnerable-and those who care for them.
But I'm sharing our story not to complain but instead to encourage others to do the same, get involved, share your good times and little pleasures too with those you care about. I know we will remember both wedding celebrations for the rest of our lives and in some way both were equally precious and special.
I especially want to say a huge thank you to my fabulous family for all they did to make it happen and the wonderful care team at Kirklands. Thanks for making Mums day so special and for caring for her and her friends everyday too. Frankly if I need to be cared for when I'm older, I couldn't think of anywhere kinder.