It’s about conversations. It’s about decisions.
It’s how we care for each other.
After the doctor said, “I am sorry but Jean has dementia-Alzheimer’s,” Jean, my wife of 38 years, gently squeezed my hand and we left in silence. At home I said to her: “We are no different now to what we were two hours ago,” but inside my stomach was churning. What did I know about dementia or caring? I had started on a journey of nine years full of love, anger, laughter, tears and finally sadness.
Jean was eventually diagnosed with three forms of dementia: Alzheimer’s, Vascular and Lewy Body, as well as MS, Parkinsons, transient ischemic attacks (TIA) and osteoporosis. I had to give up my part-time post as a lecturer at Canterbury Christ Church University. Following Jean’s diagnosis I myself had a heart ablation and my gallbladder removed.
When I look back on the years Jean was ill, I realise I too had an ‘ILL’ diagnosis. The ‘I’ stands for ignorance. I had no knowledge of caring or of degenerative diseases. I wish we were given time to talk about what lay ahead of us with a sympathetic professional. Then we could have discussed, together, the possibilities of stair-lifts, lasting power of attorney, Do Not Resuscitate orders. The first ‘L’ stands for ‘loneliness’. As the person affected loses their ability to speak and their memory deteriorates, friends become embarrassed and visits less frequent; the main carer becomes more isolated and lonely. The final ‘L’ stands for ‘loss’: the loss of your loved one. The carer can never be separated from the person with dementia. The sadness increases and one goes through a long period of bereavement.
When Jean fell down the stairs and broke her ankle she was hospitalised for 96 nights and had a plate and screws inserted. This was followed by countless infections. I visited her every single day for up to 12 hours a day. When she eventually left hospital we were told in a very cold, clinical manner that she would never walk again. But things changed when we were allocated an Admiral Nurse specialising in dementia care, who became my saviour. She was the person I could open my heart to. She encouraged me to go to social services and sent me on a training course for dementia, something all carers of someone with dementia should do.
Over the next few years our lives changed dramatically. Jean could no longer sleep upstairs and I moved my bed into the same room so I was able to comfort her during the night when she cried and was unable to explain what was wrong.
I was taken to see some care homes and was very impressed by one but said no because there was one thing that no home could provide and that was me, her carer 24-hours a day, giving the continuity of a familiar face which is vital for a person with dementia. I wanted Jean to leave this world in the home she had lived in since we were married.
Eventually Jean was unable to swallow and was placed on the End of life Pathway. I was told she would pass away in the next few weeks. Early difficult conversations would have been helpful to both of us because at this point I had to make a decision about a “Do Not Resuscitate” order. I agreed to it on Jean’s behalf as she was unable to.
Jean’s very last words to me, two months before her death, were “Thank you”. One Saturday afternoon shortly after her 72nd birthday my son suddenly shouted for me and I rushed in to find that she had peacefully passed away.
I had to make decisions for and about Jean in those final months because she was unable to communicate. One of the biggest problems when dealing with a person with dementia at end of life is the inability to hold talks with them. It is essential that these things are discussed very early on.
How I wish I had been given information on what to look for when the end is close, such as cold feet and change of skin colour. When Jean passed away my emotions were all over the place, laughing one moment crying the next. It would have been very helpful if we had been given a simple card with numbers to ring for appropriate help.
Over those years my bond with Jean strengthened and I believe I made a strong spiritual connection. Those nine years of caring for her brought out a side of me I did not know existed. Given the chance I would do it again. Despite all the emotional problems and the many battles we had, the inner rewards for me were wonderful: peace and contentment knowing I had done my best for Jean.
There are three things I feel could make end of life care better. They are:
- Instigate the ‘difficult conversations’ in the first year after diagnosis, especially if someone has dementia.
- Supply a dementia specialist for the journey of the carer and their loved one, providing knowledge comfort and continuity.
- Give far more information on end of life care and provide a simple card with essential phone numbers.
Dying means different things to different people, however, most of us share a common goal: to die a good death. In Why Dying Matters to Me, a film by Dying Matters, an eclectic range of people speak about why the manner in which they will die is important to them. – Video