I first met Ann early December when she was admitted to hospital. I was told that she probably would not make Christmas; she passed away three months later.
Ann had Scleroderma, a progressive disease that affects the skin and connective tissue. It would eventually attack her respiratory system due to thickening of the small blood vessels. (Most patients die of heart, lung or kidney complications).
Ann was in hospital because she had gained too much weight due to fluid built up. She was on a restricted intake of fluids, only one litre a day.
I walked into the ward and saw a woman who was quite breathless. Her skin was swollen, very dry and cracked.
Ann’s wish was to go home, and stay home if possible until her death. “They say I have to go to a residential hospital, I don’t want that. People don’t have time for you”
Ann was very outspoken about her being terminal ill; she was knowledgeable about her disease and immediately told me a lot about it. She was also very outspoken about liking or not liking people. ‘I just tell them’, was her remark,’ my life is too short to put up with people I don’t like; I will tell you too if I don’t like you.
Whom I really met was a very brave woman; nervous and anxious at that time of more pain inflicted on her by nurses and lab assistants. Who seems overwhelmed by all the medical and practical care that needed to be organized around her before they were willing to send her home. She was so afraid that they might not let her go.
Ann was in need of someone who could give her support and comfort and wouldn’t mind holding her hand in doing so. Who could speak up for her when she felt she was not heard, who was aware of her wishes and who could anticipate her ways of doing
Ann’s daughter was at that time the sole caregiver and in need of breaks. She did an excellent job but now Ann got to her final stage, the emotional strain and intense care became too much. By the time Ann got out of hospital, more help was organized; district nurse, Hospice, Salvation Army, Palliative GP and myself.
I soon realized that one visit a week was not enough, not for Ann and not for her daughter either. Most, if not all the care, organized around Ann was medical and practical. On a regular basis it was often a ‘full house’ with all the care concentrated around the medical needs and in keeping the place tidy. Important as that is, and all very professionally executed, only a few visitors, came to see Ann just for who she was instead of only noticing the very ill person she became.
And that is what I did; I came solely for her, I didn’t treat her body in a medical way or clean her house. Ann could be the personality who she always was and her daughter was quite relieved to go for a coffee, or to catch some sleep. Ann encouraged her to do her own thing during my visits, she felt at ease in my company. In this way, I reduced some of Ann’s and her daughter’s stress.
Soon Ann’s daughter started calling me her mums ‘buddy’. She told me that her mother looked forward to my visits. ‘My mum’s mood lifts on the days you come and see her’.
What did I actually do?
It may sound a little dramatic but I have no better way to express it. The moment I stepped into Ann’s house she became the centre of my heart and from that place I cared for her.
I listened to her stories of the past and her thoughts about her daughter’s future. She always made plans about the day ahead, there was always a tomorrow. She organized her funeral, her will and other financial arrangements; she even organized a holiday for her daughter’s family to take after her death. No comments were necessary; Ann needed someone to express her thoughts, worries and ideas to, someone who wasn’t emotionally involved.
I laughed with her; shared in her joy, her jokes and humour. When she was sad I gave her comfort and respected her moments of silence.
I learned to be dignified. Attention towards hygiene and discretion in how help is given are important.
I learned the power of Observation: to see what is needed; refresh a drink, add an extra blanket, give words of comfort or just sit next to her and hold her hand. Touch was very important to her.
Touch. I helped to get the blood flowing into her very swollen blue and purple, cold hands and feet; did massage to get some moisturizer into her cracked skin and did Reiki .
The surprise and relieve on Ann’s face, when I did this the first time in hospital was so rewarding. The lab assistant who walked in during this first massage was able to get her blood flowing, without the need of endless needle pricks. Since that first time she kept asking for a massage and Reiki every visit. She loved the feeling of my ‘warm’ hands. My touch was comforting.
She was also happily surprised when she fell asleep during my massage; overall she didn’t sleep much. She sat in a recliner, day and night. A bed was too uncomfortable.
Taste .Towards the end Ann was relieved of the limitation of one litre of fluid a day. No longer feeling thirsty was a blessing for her. I scanned supermarkets for certain items she craved. Food was no longer seen as a nutrient; it was one of the few pleasures she enjoyed.
The last time I saw Ann was on a Friday, she was very tearful. She immediately took my hand, kept holding it and said: ‘I already miss you even before you go ’. But it was Ann who was leaving.
On Saturday her sister, who flew over from overseas, came to see her. Ann was so much looking forward to that visit. She talked about it for days.
On Sunday she requested to be taken to the Hospice, she was ready. Even at that time she made jokes that they had sent such ‘handsome’ St John attendants to transfer her.
She arrived at 6.00pm at the Hospice and died peacefully at 11.00pm.
Ann’s funeral was special. The funeral director had come to see her and organized it all according to her plan.
Ann felt a special connection with birds and loved the tranquil sound of water. These sounds of birds and water were in the background during the whole service. She had her life story told and pictures chosen to visualize it, favourite poems read and songs listened to, or song by us.
Ann was grateful for all the help she received. Despite her being so ill, she had taken the time to write down the names of people and organizations she liked, to be thanked at her funeral. They were all read out aloud at the end of the service.
She also wanted it to be known that my friendship and companionship during her last months had been very important to her. It shows how significant the work we do is.
After the funeral, at the reception, I was asked if I found it depressing to visit people who were terminal ill.
My answer is no, it is in a way inspirational to experience how much good is coming from being someone’s companion. Just to be there; to care and specially to look after their emotional and spiritual needs and well being. You truly become their friend.
Ann was so dynamic and wanted to be involved and in charge of her life until the very end. That’s why, I cannot agree more with Dr David Kuhl who said:” People who are dying are still living”
Ann was a great example of that.
Never underestimate the strength they show to hold on to life; they deserve to be treated and respected as fully function human beings.
By Annette (“Ann” changed for privacy reasons)