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Graham's story - The illness of Sheila my wife and her passing

I thought I might write this article following my wife Sheila’s passing last November because it may be helpful to others who are feeling the pain of losing a loved one. It can be comforting to talk about one’s experiences and feelings at these times.

I am Graham and was born in Hampshire England in 1939. At the age of sixteen in 1955 our family moved from Cheam Surrey England to Nairobi Kenya as my father was transferred there. I returned to England in 1962 and met Sheila in London at the Overseas Visitors’ Club, Earl’s Court.

Sheila was a South African on a ‘’working holiday’’ visit to the UK. We fell in love, but Sheila returned to SA in 1963 and I eventually emigrated in February 1964. We married later that year and had a wonderful life together for 48 years. We have three children. Susan, who is single, lives in Sydney, Australia. John, who is married with two daughters, lives in Sandton. Barry our youngest, who is married with two daughters, lives in Douglasdale.

Sheila was devoted to her family and spent most of her life bringing up our children. She was a real home-maker and always involved with the children’s school activities and Susan’s girl guiding. I was so lucky to have Sheila as a partner. She made my life a joy and provided such inspiration.

Sheila’s health started to deteriorate after her 70th birthday in 2009. She always looked strong and young for her age but she was not fit and had always smoked. She started to experience difficulty breathing in early 2010. Sheila had quite serious emphysema. The doctor prescribed various inhalers and other pulmonary medicines. She was also treated for high blood pressure and cholesterol. We tried to get Sheila off smoking by putting her on an Alan Carr course to not avail. We tried electronic cigarettes but she gave up on these. She did not like the idea of a nicotine patch. She carried on working three days per week (10am to 4pm) at our sons business in Randburg – I tried to get her to retire, but no!

In February 2011 I happened to be combing Sheila’s hair as she was feeling a bit tired, when I noticed a large brown patch on the top of her head. I asked her if she knew of this and she said that the doctor had given her some cream to put on it. I am not sure how long Sheila had known of the existence of this mark but I suspect it may have been far longer than any of us realised. I told Sheila that we had to get a second opinion immediately – she agreed.

The specialist confirmed that it was a malignant melanoma. There was also a melanoma lump behind her right ear. Sheila had these removed in March 2011 and the specialist said there did not seem to be any spread to her lymph nodes, but there were two cancerous ‘spots’ between her lungs and one at the base of her thorax. He recommended that she go for chemotherapy at an Oncology Centre.

Sheila was booked in for six sessions of three consecutive days, each lasting three hours or so each day starting in May 2011. I stayed with her on the first three sessions, but we could not see any beneficial effects although they made Sheila feel tired much of the time. We went for the fourth session in early August 2011 but the oncologist postponed the treatment as Sheila kept falling asleep in front of her. On the 17th August Sheila came home from work at about 5pm and said she was feeling very tired. She told our sons before leaving that she had decided to quit smoking from that moment onwards. The next day the 18th Thursday Sheila slept the whole day. On Friday morning I persuaded her to see the doctor at 11am. Unfortunately the regular doctor who attended us for years was not available so we were seen by a stand-in doctor. She prescribed various medications and told Sheila to go and rest, which she did. She had a light snack that evening and went to bed.

On the Saturday, 20th August 2011 she awoke at 8.30am. When I went through with a cup of tea Sheila was sitting on the edge of the bed and told me she could not stand up. It was immediately obvious that something was seriously wrong with Sheila and I could not get her to her feet. I called the ambulance service. They took her to the hospital’s admissions arriving at about 11am. The examining doctor only came through to see her at 3pm and diagnosed that she had had a thrombus stroke in the left hemisphere. She was rushed into ICU – she could still speak at this stage.

They put her on nose-tube feeding and also inserted a ventilator tube. When I next saw her I was totally shocked at seeing her so helpless and vulnerable in that ICU bed – I also felt so helpless. They stabilised Sheila and moved her to a standard ward after two weeks. During this time a feeding PEG had been inserted in her stomach and she was on 24/7 oxygen. Unfortunately she contracted an infection in the lungs after a further two weeks and had to be returned to ICU for a further two weeks. Again they stabilised Sheila and she was moved back to the standard ward where she remained till her transfer to another hospital on about the 16th October 2011.

Sheila seemed to be improving at this stage and we were hopeful that she could be rehabilitated through various therapies. That was the reason for moving her to the Rehabilitation Wing of the new hospital. She spent the next two months there, but doctors said that despite her progress they believed that the cancer was advancing into internal organs. They said there was not much point in sending her for further scans and that more chemotherapy was out of the question.

In early December 2011 the medical aid society refused to finance any additional stay in hospital and said that Sheila would have to transfer to a “step-down” institution. (i.e. a nursing home or care centre). I was very well acquainted with nursing levels that are rendered in South African hospitals, even private hospitals, so I decided that Sheila would be nursed at our home with a full-time nurse.

On 15th December 2011 the ambulance service brought Sheila home and I used a nursing service that provided us with an auxiliary nurse. I gave her an en-suite room in the house and she was with us 24/7 thereafter. In the meantime I had installed ramps for easier access with the wheelchair.

At this stage, it should be noted that the family was quite positive that Sheila would make headway with rehabilitation, and this was the case until about April 2012 when we discovered that three lumps had appeared on her neck, hip and upper leg. I thought the leg one was a thrombus, but our GP examined her and was of the opinion that the lump was cancer. We took Sheila to another nearby hospital for a CT scan. The doctors’ analysis of the scan showed that the cancer was extending deeper and faster than originally thought and was in the spleen, the liver and left lung. Our GP gave Sheila two-to-six months.

From this point onwards the family agreed that we had to change from rehabilitation mode to care and comfort mode. We were all determined that Sheila should not suffer pain and should be made as comfortable as possible. We carried on moving Sheila each day from bed-to-wheelchair and from wheelchair-to-Lazyboy/recliner in the lounge or out on the patio. Sheila seemed to enjoy this activity and gave us one of her well known smiles every time we used the hoist and sling to move her around – we did this every day. The nurse and I became fairly expert at this movement procedure, but had to watch that the oxygen tubes were long enough. Sheila could go for five or ten minutes off the oxygen, but no longer. We had a tube going through a hole in the wall between the bedroom and the lounge. This enabled us to place the oxygen concentrator machine always on the opposite side as it made quite a noise. We also had to monitor Sheila’s oxygen saturation level continually, particularly when we moved her. The level had to be maintained at over 90%. We had a small portable finger sensor that measured this through the skin. The oxygen machine had a regulator so we could adjust the oxygen flow up to five litres per minute. I am not sure whether this sort of daily therapeutic activity and movement could have been done as safely in a nursing home.

It must be born in mind that Sheila not only could not speak since her stroke, but that she was immobile (except for a slight movement of her left hand), incontinent and on 24/7 oxygen. In hospital she was fed 90% through the PEG with processed liquid food like Fresubin, with the nurses occasionally feeding her through the mouth with whatever the hospital kitchen had prepared that day - when they had time!

At home we called in a dietician from the start and prepared all meals according to a set weekly menu. We were determined that Sheila should be fed through the mouth with the PEG being used as a backup, if and when necessary, and for the administration of medicines and extra water.

This routine was followed strictly until 29th July 2012 when Sheila suffered a second stroke.

The doctor said that she had probably had a seizure and stroke at the same time. Apparently this often happens and that 90% of stroke patients have a second stroke within a year. This was the case with Sheila and her seriously narrowed carotid arteries undoubtedly added to the stroke.

At this stage I felt that poor Sheila was already going through so much. She had no quality-of-life after her first stroke nearly a year earlier. Now she had no awareness of her life as she lay with her eyes closed for most of the time thereafter. We still moved her to the lounge during August to October but she was going down quite quickly now. During this time her lungs became more congested with secretions. We put her on a nebuliser twice a day, but then we were forced to perform suction extraction on her initially once or twice a week – this is one of the most stressful medical procedures that a nurse or family member must perform. When it got to doing suction two to three times a day I decided, with the agreement of the family, that it was time for Sheila to be transferred to a nursing home in Bryanston. This was centrally situated between the residences of my two sons and me. Our sons and daughter have been an enormous strength and help during this very difficult time. We are a very close-knit family based on a foundation of love. Susan came over from Australia several times in 2012 and was of great assistance to me in many ways.

Sheila was very well cared for at the nursing home and died peacefully there at 8.10am on 22nd November 2012 without waking up. Susan and I slept there that night and were with her in the morning. Sheila’s suffering was then over and she was able to Rest-in-Peace.

I look back on the medical events that occurred in 2011 and 2012 and think that the strokes, certainly the second one, insulated or protected Sheila against the ravages and possible pain of the advancing cancer. After all, she died of cancer not really of the strokes, although they were contributing factors. Everybody, including the doctor and therapists, agreed that she did not seem to be in any observable pain – this surely must be a blessing.

When I decided in December 2011 to bring Sheila home and nurse her, I was hoping against hope that she would respond to physiotherapy and that we could get her speech back, but I knew that it was quite possible that the cancer would become aggressive in the absence of chemo treatment - which it did. The neurologist looked at me at that time, and asked me if I really wanted to do this. I said that I was determined to provide Sheila with a level of nursing that would be no lower than that which I had observed in two hospitals for four months.

I was apprehensive at the start as to whether I would measure up to the task, realising that in many ways I had Sheila’s life in my hands. We had always said to each other that as long as our own health permitted we would care for either one of us who became ill – that is a promise that I know Sheila would have honoured to the full if I had fallen ill.

Some people have asked me why I wanted to care for Sheila at home instead of just placing her in a nursing home. I suppose there are several reasons. I wanted Sheila to be in familiar surroundings, although at one stage when asked if she recognised the house, she shook her head – but we do not know whether this was a true “no”. Sheila would often shake her head and look upwards in response to a question – we interpreted this as “I don’t believe it”, or “I don’t know”. We decided not to pursue this line of questioning because we did not want a negative response to the question, “Do you know who we are?” – that is, myself and our three adult children. Sometimes belief is better than knowing!!

I must say that the support that we all received from relations, friends and professionals was practical, compassionate and very attentive. We are all so grateful for this blessing and realise that not everyone in similar circumstances is always so fortunate.

Would I have done anything differently? Well, let’s see.

At this stage one has to be careful not to beat up on oneself too much! Of course there are things that could have, or should have, been done differently. I like to think that, although not everything was done perfectly, I did try to do my best. It is not going to help me or anyone else if I allow myself to feel guilty, angry, inadequate or devastated. I could have taken Sheila for more walks in the wheelchair around the estate that we live in. I sometimes wonder if the chemotherapy was a good idea, or whether it contributed to her first stroke a few weeks later. I think I should have complained far more when at the first hospital Sheila waited four hours before being examined by a doctor in the emergency admissions. We did not realise that Sheila had had a progressive stroke. I wish I could have stopped her smoking. I wish I could have got her to visit the doctor more regularly over the years. I wish I had noticed the melanomas on her head and behind her ear earlier. I wish I could have got her to exercise or go to gym. I wish she could have eaten more healthily - I wish….…..!   – I wish…….!

It’s OK to wish, but I know the family and I did our very best, so let’s not dwell on what has happened! We must move on with our lives and try to be as happy as we can be….. One area of my life that has been influenced by my wife’s illness is the need to increase my fitness and go to gym more regularly. I find it helps me to maintain a positive frame of mind. Also I am conscious of a need to keep active and to keep my mind distracted with involvement in my hobbies and interests, and in particular, by engaging proactively with people, not just my family and friends. And above all, I try to keep cheerful and hopeful. Let’s continue to ‘Walk-the-Talk’!       30th November 2013.