Kate’s Story: “The person inside the person with dementia”

Kate Burnett

Wednesday 15 January was an ordinary, sunny day at Cornwall Park Hospital. The residents were waking up to eat their breakfast for the day. Bur for one of our residents, this day would be unlike any other for quite some time.

When Jenny Smith (not her real name) woke this particular morning, she would be free from her crippling and cruel dementia. The staff were aware of the change from the very first moment they entered the room. Her usual furrowed brow was no longer so; in fact her features were very different; soft and loving. Her usual colourful language was replaced with words of kindness and joy. The staff bought her out into the dining room and for the first time in over a year she sat upright at the table and used a knife and fork to enjoy her breakfast.

This lady and I have an incredibly deep bond. I had been working here just a few days when she learnt that if she shouted my name I'd be straight there to give her anything she wanted, and so she did repeatedly 'Kate, Kate' morning noon and night. As the time went on I'd spend my working days with Jenny right by my side. I'd live for those moments when she'd briefly surface and I would get a hug or a kiss but those moments were few and far between. Jenny has a unique way of speaking, she comes up with the most imaginative and funny insults and phrases, just one of the reasons that I had come to love her so dearly. That being said, her high level of dementia makes her very troubled and highly distressed.

So when I walked into work that morning several staff approached me to tell me of the wonderful news. As I walked into the lounge there sat my companion with the sunniest of dispositions chatting with the nurse. As she looked over at me we both started to cry. She looked just like the lady in the pictures I'd seen of her before entering the hospital, she looked 10 years younger. She threw her arms out to me and we embraced like old friends who had been apart for too long. She put her hands around my face and studied it a while before saying 'take me to the garden there is much to discuss'.

I took her out into the sunshine and we sat by the rabbit cage as we so often did. Two of the other staff accompanied us as none of us wanted to miss a moment spent with the real Jenny. She discussed personal matters of importance such as which charities she'd like to donate her jewellery to and the health of family members. She could remember things I'd told her in detail such as my boyfriend's name and his profession. I was so overwhelmed at her memory and conversational skills; sometimes you wonder if the person inside the person with dementia is taking in what you are saying. It would appear from Jenny's awakening that they absolutely are. She took my hand and said to me; 'sometimes I'm so very cruel to all of you but none of you ever turn your back on me, from now on when I say the 'f' word I want you to imagine that I'm telling you how much I appreciate all of you.' I was sobbing almost uncontrollably at this point, I wanted to tell her how much she meant to me but the words wouldn't come out through the tears. She took the tissue out of my hand and dried my eyes and said; 'I have a lot of love for you Kate, I want you to always remember that'. At this point the other staff had gone back inside and we were alone, she lowered her voice and said to me; 'please answer this honestly Kate, I know you won't lie to me,' I nodded. 'Will the dementia return?' Sadly I nodded my head again, 'then how long do we have together?' I told her that I did not know, it could be a few minutes, maybe a few hours but we would cherish every second we had together. At this point she cried and told me that she badly wanted to stay. I told her I'd spend all of my prayers and wishes trying to make it so.

That afternoon Jenny's son and I took her out of the hospital. We drove her to the beach and she told me stories of when she lived there. We took her to church and she was overjoyed that all the features were just as she remembered them. After that we had afternoon tea and some of her family and friends came to visit with their children which Jenny was so pleased about. However, we could see that she was getting tired and were aware that we could lose her at any moment.

We got back in the car and I sat in the middle with my arm around her and she lay back against me. She kissed my hand and held it tight as we passed the beach where she had grown up. She said she'd never seen anything so beautiful and softly fell asleep. I held her tight to make sure she felt loved and safe.

She woke around 15 minutes later and bit into my arm with ferocious anger. We were all too aware that the dementia had returned. Her screams were louder than ever as we took her back into the hospital.

To this day, she has never resurfaced. She won't hug me and is repulsed when I kiss her cheek. No matter what happens, I'll always remember that a miracle happened at Cornwall Park hospital on Wednesday 15th January and I know that deep down in that person with dementia is a vibrant, intelligent and loving woman trying her best to tell me that I'm appreciated. And my goodness do I love that woman.

Kate Burnett is the Activity Officer at Cornwall Park Hospital, Epsom, Auckland.
This article first appeared in Dementia Care Briefing for Bupa NZ employees, Issue 14, March 2014 and is reproduced with the kind permission of the author and the resident's family.