A Family’s Journey with Alzheimer’s
As a family we found it very challenging when our dad was diagnosed with Alzheimer’s some years ago. Some of us live long distances from our parents who live in rural Perthshire. This was uncharted waters for us. We certainly needed help but it was difficult even to know where to find it. We became onlookers as those we love, our parents, grandparents and great grandparents, began to live through a time with greater challenges than any other era of their 60 year marriage. When they should be enjoying their most precious years as a couple they have mountains to surmount that most of us would balk at.
Mum remains the primary care-giver, despite increased health problems and advancing years. In Scandinavia care-giving is vastly shared with state funded respite care, such is the recognition that such a role cannot possibly be shouldered by just one person, or one close family. Mind you our mum is a bit of a warrior. She declared early on that while dad had changed SHE had not and “it was unreasonable for her to be expected to change her personality to give way to this uninvited guest Alzheimer’s”. That did not put her on the easiest route through, but it has been the right one.
Of course much has changed. Although only diagnosed during this decade almost 20 years has passed since she first wondered what the problem was. She has been through all the good, bad, isolated, lonely, funny, fearful and wonderful days during those years. She is constantly adapting. She has experimented on this disease that has invaded everything they have known and she has already discovered stuff the books are only just being published about.
But she would not say she is an expert. She is Bob’s wife. Her assessment of what their needs are is practical and reasonable. It is born, not out of crisis, but out of everyday life. Meeting those needs is entirely possible. With an unspoken belief in their commitment to continue living the life they gave to each other in marriage as a young couple at the altar of their local church more than 60 years ago, their approach is certainly what is becoming known as “Person Centred”. When we as a family consider them we first see mum and dad. The intruder Alzheimer’s is something which is a part of all of our lives, but their lives are so much more than those symptoms of disease.
That is where the Care and Wellbeing Co-operative has helped. Africans say “It takes a village to raise a child” and that is clearly true of those living with Alzheimer’s too. Local volunteers drive dad to a day centre where he enjoys social interaction. Friends and neighbours offer lifts, chat, laughter and support. Community groups, churches and NHS led activity groups provide interests and spiritual support. Days out with family, social events, holidays and family occasions are much enjoyed. Life seems full. Over the years an important schedule has been established that offers both active life and short respite opportunities when needed. But there are corners of the home that cannot be reached by love. A wet duster and a soapy mop are more advantageous. Stepping into the garden reminds them it doesn’t grow itself. Grass cutting, weeding, dead-heading, planting and thinning – things that once were so easy are beyond their reach now. Is it so important? Well if it’s important to us it’s important to Care and Wellbeing Co-operative!
When mum and dad first encountered Care and Wellbeing Co-operative we were amazed that here is a group who seemed to actually realise the complex needs of their situation. Life is not all sickness, broken-ness or crisis. Life is still being lived in all its abundant opportunities. When Care and Wellbeing heard that dad needed someone to walk with, something he has enjoyed since he was a boundless teen, they offered Gordon to come and do just that. Each week, in all weathers, they take off into the forest for some hours, returning full of healthy glow and chatter. I found Gordon one day tending the garden while we had been out and while he was waiting for our return. He and dad do that together too. What about the mopping and cleaning? Care and Wellbeing thought it mattered! So along came a very able helper to get down to the nitty gritty of some really felt need. Mum called me that day, so uplifted, so excited, so full of life.
Kindness in the shape of practical help is a very powerful tool for healing. Care and Wellbeing Co-operative seem to have a gold mine full of that! Give them a call, we are so glad we found them!