Dementia – feeling bereft but learning to treasure the moment

Devoted husband cares for wife at home thanks to family and community support

From this day forward, for better for worse…. in sickness and in health….Colin and Liz Kennedy made this pledge to each other when they married in 1964 – nearly 57 years ago.

True to his word, Colin, now aged 82, still cares for his beloved wife in their Birsay home despite a fairly rapid decline in Liz’s condition following the diagnosis of dementia in January 2019. He is supported and helped by their daughter Sarah Kennedy Norquoy, friends, neighbours and the wider community.

The pandemic has exacerbated the situation and Sarah believes that it has played a part in the deterioration of Liz’s condition simply because she wasn’t able to access the same sources of stimulation as before.

However, the family are very grateful for the support that is available and have pledged to sign up to the Herbert Protocol, and to download the Purple Alert, a community minded app to help locate people with dementia if they are missing.

The Herbert Protocol is named after a man called George Herbert - a war veteran who developed dementia. He went missing and sadly died when searching for his childhood home. The Protocol has been developed by Mr Herbert’s family to allow immediate sharing of vital information with the police if a person with dementia goes missing. Families are being encouraged to fill in what could be a life-saving form that is kept at home containing important details regarding known routines, habits as well as descriptions of your friend/relative and details of their and others involved with their care. It can be handed to Police from the outset to alleviate gathering information during what can be a very stressful time.

Sarah is keen to encourage other families in Orkney to do the same.

“I didn't know about either of these until now and think both are brilliant. I was deeply affected by a man who went missing recently not only because I knew him and his daughter but also because I knew it could so easily be mum. Anything that can help find a loved one if they go missing can only be a good thing.

“It's something none of us wants to think about but it happens. Mum going missing is a huge fear. I can hardly bear to think about it. Even someone who appears reasonably well can become confused for medical reasons such as urine infections. Wouldn't you thank yourself for doing it if the worst happened?”

Sarah has written a book “Salt On My Skin” – a personal account of everyday experiences, mixed with the grief brought about by the dementia diagnosis and the joy of sea swimming.

Sarah shared a conversation with her mum in the run-up to its publication: “I’ve written a book about you mum”.
‘Have you!?”
“Yes, it’s about your dementia diagnosis and how horrible it all is because people going through it will want to read it and understand. We want to help them - you always want to help people understand medical conditions. You always want to help.”
“Yes, I do”.
“Hopefully it’ll be out in a month or so and you can read it.”
“Well done, I’m proud of you”.
“I’m proud of you too.” And then we both cried.

Sarah has kindly agreed to share their story further in a bid to raise awareness of the feelings of grief associated with dementia.

“Mum is 78 and was diagnosed in January 2019 but was showing signs things weren't right about a year before that.  She has Vascular Dementia which I believe is the second most common and caused by a series of tiny strokes.

“She goes down in steps rather than a gradual decline. Some people can live at the same level for quite a number of years, but mum has gone down quite quickly and is a very different person from the one she was at diagnosis. She can't be left alone now as her short-term memory is very poor.

“She's gone from an extremely high functioning, strong capable woman who did a Mensa puzzle every day, to someone who is often extremely bewildered and confused but thankfully still very loving.

“My dad has just turned 82 and his life has been turned upside down. He does the main day to day care of mum now and I've seen a seismic shift in their marriage as he constantly adapts and recalibrates to the changes in mum. 

“I live just a few miles away and am working full time so provide daily phone support as well as sorting out all the queries and questions that arise. My sister lives in Colorado so can't do much day to day stuff but, keeps in touch on FaceTime.

“We have Donna from Age Scotland who comes twice a week and is worth her weight in gold. A constant ray of sunshine and mum and dad think the world of her. She provides care in the form of cleaning, cooking, emotional support. 

“They also have friends and neighbours who visit and support which is hugely valuable and really helps prevent me from getting burn out. It takes a village to raise a child and I've learned it also takes a community to support the elderly!”

Sarah’s determined that her mum will remain at home, which may mean moving in at some point – but she is quick to stress that every individual’s situation is different and must be managed accordingly.

Liz is much more than a dementia diagnosis. She was a dedicated nurse her entire career and volunteered at the Red Cross shop. A talented knitter, she created beautiful toys and clothes.

“As her dementia progressed her knitting became ever more random,” Sarah said. “Every time I saw her, she gave me a funny little shaped piece of knitting and called it a scarf. It broke my heart, but I knew the knitting was helping to keep her occupied. Turns out she was doing the same to a friend who visits. This friend turned the random bits of knitting into a huge blanket which she gave to me. She suggested I spray it with mum’s perfume and when it’s all over this would be a continuing source of comfort for me for many years to come.”

Coping with the changes that can be caused by dementia can be difficult and emotionally distressing and often people feel bereft at these changes.

But there’s one small comfort Sarah’s holds dear for the moment. “My mother has forgotten many things, but she has not forgotten how to love, and for that I am deeply thankful. Sometimes there is joy and smiles, and I capture them and lock them away in my heart forever.

“My mum asked me the other day if I was the youngest of her children. I nodded and told her yes, I was. I asked her if she knew how old I was. ‘About 30?’ She replied. Nice one mum - I’m 51.”

Maintaining that humour whenever possible is essential for everyone’s mental wellbeing, because there are also many tears.

“I cried in the shop when I chose mum’s birthday card this year. Because the woman who raised three children while holding down a nursing career is now becoming the child that I frequently have to parent. She regularly forgets one of her children died 12 years ago and asks where he is or what happened to him. She even thought he had phoned once.

“I recently told her she wasn’t allowed to leave the table and play with the dog until she’d eaten her tea. Just like a parent would tell their child. I’ve shown her how to make a cup of tea, demonstrated how to eat an ice cream from a tub and held her hand to cross the street. I’ve done the many jobs for my mum that a mother does for her child.

“It's a living grief as you're saying goodbye to parts of them all the time. My dad has become his wife's carer. I have become my mum's parent and I cry almost daily.

“Mum grieves the loss of herself too. It's very hard to lose your independence. Having to stop driving hit her hard, but also simple things not knowing how to make a cup of coffee anymore.”

Lockdown hit the family hard.

“Mum didn’t really understand what was happening. My husband was shielding and my parents too, so I was doing shopping for everyone and running myself ragged. I eventually started having shopping delivered which alleviated some of the stress. Things she enjoyed doing like visiting the library and friends all had to stop and I’m sure that played a part in deterioration because she just wasn’t getting the stimulation she needed.

“The Memory Cafe has done a brilliant job though in keeping in touch and sending gifts out every week. Puzzle books, fancies that kind of thing.”

The family are incredibly grateful to everyone who has helped in any way which allows Colin and Liz to remain together – still holding hands - just as they did all those years ago when they made their vows to each other.