Dad was aged 78 and was very satisfied with what he had achieved during his almost 79 years. He was still working and continued to do so until 6 weeks prior to his death. He virtually left work, went to hospital, transferred home to live out his last few weeks, during which he celebrated his 79th birthday and had many very memorable talks with his wife of 55 years, his remaining 6 children and all of his 25 grand children, as well as the numerous friends who called to have a chat. He would often ask us to be present if he had visitors, as his voice was very soft by this stage and he would tire easily, but we never managed to get a word in. He continued to hold court until 24 hours before he died. I think Dad chose his journey of death as a lesson to the rest of his family, just like Morrie Schwartz did in “Tuesdays with Morrie”, a book by Mitch Albom, which I’m sure a lot of you have read. He took all of us along for the ride and I’m sure we have all learned much about life and death from his great lesson.
To me, Palliative Care is about caring for a person with a terminal illness. It is not only about those suffering from cancer, but many other diseases as well. It is care that minimises pain and discomfort whilst enabling the patient to chose their own course of action, within reason, of course. The most important person during palliative care is the patient. This certainly was the case with my Dad and I will endeavour to explain how we as a family, a large family coped with the demands, what helped us and how we tried to keep the social and emotional impact to family members to a minimum.
Communication and inclusion were always high on our priority list and as we all like to talk, that certainly wasn’t a problem. As two of my brother’s commute and work in Sydney and with another brother living in Orange, it was vitally important to have an open means of communication. All of Mum & Dad’s 6 remaining children and their 25 grandchildren, ranging in age from 28 to 8 years were included at every opportunity. There were no secrets surrounding Dad’s illness or his imminent death.
Some of the things that certainly helped all of us cope with my father’s illness and ultimately his death included the following.
Dad’s attitude to life and to death. He often told us that we are all put of earth to die, and that some of us were very fortunate because we are given a time to “get our affairs in order”. He believed that he was on of those fortunate people
Dad’s need for all of us to know what was going on
Lunchtime meetings with Alison or Jenny, the palliative care nurses - talk of bowels, bladder, pain, tolerance or intolerance to food, drinks, breathlessness, showering, smoking and consultation with doctors
Dad would talk to us about his imminent death, how we would care for him, for mum, his funeral and much more. He was a person who was in control and fiercely independent all his life and wanted to remain so for as longs as possible. He certainly called the shots right up until his death.
Dad was admitted to hospital for a short stay because of symptoms associated with his illness, about six weeks prior to his death. Once his condition stabilised, we held a family meeting in his hospital room, with the palliative care nurse present and planned what we could achieve and how we would manage dad at home for what was to be the remaining weeks of his life. Dad and Mum were present along with their six remaining children and any of the grandchildren who chose to be there. It was school holidays, so some of the grandchildren didn’t really have a choice. A plan was actioned and we were able to take Dad home, with the support of the palliative care team, the community nurses, Dad’s GP, the ambos and us.
Generally, no-one was excluded from Dad’s room, except when we were sponging Dad in the last couple of days of his life. By this stage he was catheterised and was wearing an incontinence aid because of diarrhoea and he didn’t want his younger grandchildren to see him like that. We had approval to take photos including Dad in his last few days and all he asked was that we didn’t remember him like that. Family members ranged in age from 53 years to 8 years. Their questions were answered very openly and honestly at all times. We developed rosters during the last 6 weeks of Dad’s illness for a family member to stay the night with Mum and Dad. Even though Mum is very capable, Dad was very protective of her and as she has a severe hearing disability, someone staying was very appropriate as once Mum took her hearing aids out to go to bed, she didn’t really hear anything that happened. Dad thought that it was very important that Mum got her rest as well, as some of the days were really quite exhausting for both of them.
We had a ‘do-drop-in-centre’ for the family, which was an around the clock type of thing. Dad was set up in the lounge-room and had a very bright lamp and as he needed lots of fresh air, the door to the outside was mostly open. This light turned out to be a sign or a signal that either Dad was alright or that he was awake. The grandchildren were on duty for the night shift and would sleep there to be ‘on call’, so to speak. We purchased a remote door chime and Dad had the ringer and the chime was able to be located wherever it needed to be. Dad would check it every night before going off to sleep. It had to be positioned so that he could hear it as well as the sleep-over person hearing it. There would be panic stations if Dad couldn’t hear it, because he didn’t know if the person who was being summoned could hear it either.
The children and the grandchildren organised the roster on a weekly basis and Dad always knew who was going to stay the night. If Dad didn’t feel really comfortable as his condition deteriorated, he would let us know and so the second stage of our plan was put into place. Stage 2 was basically that one of the adult children as opposed to the grandchildren to stay and the sleeping arrangements changed, so that a second bed was set up in Dad’s room for us to sleep and at times one of the grandchildren as a back-up person. At all times, Dad knew what was happening, who was present and so on. We also made a promise to both Mum and Dad that if his condition deteriorated significantly during the night, Mum would be woken immediately. Mum would check on Dad several times a night as well as each time she would stir, she would get up and just check.
Whenever Dad’s medication was changed, we would get scripts filled, so that if an emergency rose, we would have the necessary drugs available. We checked with Dad’s GP as to whether he did house calls, because without the type of reassurance that a doctor gives his/her patients, Dad would not have been so comfortable with his situation. If Dad didn’t want his medication at a certain time, then he wouldn’t have it until he was ready. If he was ready for a sponge at 8 o’clock at night, then he would have it, even if it took us 2 or 3 hours to complete it, having to stop for a smoke in between washing arms and legs or face and back. Time was not a factor in Dad’s life at that stage and he thought it shouldn’t be in any one else’s either. He often told us that if we weren’t able to look after him at home, he would have died weeks before he did, because he would have told them all where to go if he had to be rushed or felt obligated to do something he wasn’t ready to do. He would eat when he wanted and not necessarily when it was meal time. Just as well there were many of us to share the load, because if we were beginning to get a little intolerant of the situation, we could have some time out and call on someone else.
We were in a position to be able to access and use an electric high/low bed, special mattresses, gel pad, oxygen concentrator, commode char, urinal, dressings, shower cloths and hair washing caps – absolutely anything that was needed. All of Dad’s physical comfort needs were able to be met with the generosity and assistance of the palliative care team and from within the community. We had all the important phone numbers and instructions on a chart that was displayed in Dad’s room and a second copy of the fridge in the kitchen.
This information was compiled with Dad’s assistance and wishes. It included information about nurses, doctors, and Dad’s wishes if he was to be transferred to hospital or wherever. As Dad required oxygen, there were instructions what to do if there was a black-out. The ambulance guys were asked about this when they transferred Dad home from hospital. This information was all written down, so that we didn’t have to rely on someone telling someone else. We tried to leave no room for error. It was important that Dad had the utmost confidence in each and everyone of us so that he did not have to have any unnecessary anxiety attacks as this was most distressing to him and anyone else there to witness it.
We talked to Dad about his funeral and he didn’t want a fuss or bother. He told us he didn’t want us to cry and make a show either. We have him an assurance that this would not happen. He chose his pall bearer and told us what hymns he didn’t want rather that what he did want. He told us that he would leave that up to us. He gave us specific instructions about when he arrived at the church for his own funeral and so on. We promised him what we knew was achievable and told him we would do our best for the rest. Everything that he requested was able to be organised.
This was made much easier because we went to the funeral home prior to dad dying. We asked them about any special requests so that if anything had to be checked out, there was time available to do so. We were able to choose the casket and the flowers without everything being such a rush. We weren’t so emotionally fragile either. There was never any pressure for any family to be present for any of these activities at any time. Everyone was encouraged to be involved but never pressured. If they didn’t feel comfortable doing something in particular, then that was OK.
When Dad did die, most of the family was round his bed, but some of the grandchildren who live in Sydney had to be contacted. Some of them requested that they wanted to see Dad at home before he was taken to the funeral home. Their wish was granted. The family prepared Dad for burial. We collectively chose what he wore and everyone who wanted to be involved was able to do so. We washed, shaved and dressed Dad so that we could all say our last farewell. We had a beer with him and other family and friends were able to way their farewells as well. The children were free to go and ‘talk to pop’ if they so desired and ask any questions of us. We considered that having a deceased person in the house was really no big deal and that the children would feel much more comfortable with death being able to touch, question and hold him if they so desired. The funeral home was not contacted until the following morning, nearly 12 hours after his death.
We also had frequent contact with our priest during Dad’s illness and he gave us books from which to choose readings and prayers to prepare for the funeral service. Because some of these prayers trigger an emotion within, it certainly helped to have the opportunity to browse over a period of time. We would often come together in prayer with Dad and even though this was an emotional time for all, it certainly helped us all come to terms with the fact that Dad was only to be with us for a limited time. These opportunities were very personal and gave individuals the opportunity to share their anxieties and thoughts.
We made a list of people who needed to be phoned once Dad had died. In a state of emotional turmoil, we thought we would not necessarily remember who had to be notified. So, a list was made and systematically worked through when the time came to make these calls.
Dad had tasks for most of his children during his illness; one was the cashier, one the book-keeper, one the ‘matron’ and so on. No-one was shielded from any of the pain and suffering. It was our way of minimising the social and emotional impact on all of us. Dad loved people to call and have a chat. He never turned anyone away and if he ever knew we asked someone to call back, he was most annoyed. He told us that if they were good enough to visit, then it was good enough for him to see them. Even though he didn’t want to be remembered in his emaciated state, he was never embarrassed by his appearance. He shaved himself almost every day and made sure his hair was combed and that he was always clean and presentable. It wasn’t hard to make conversation with him, as he did most of the talking on most occasions. If he knew boys were driving back from Sydney of an evening, he wouldn’t turn his light out until they had called on him. Many late nights were experienced by all.
In summary, I think that the most important part of the care of my father was knowing that he was happy and satisfied and comfortable with the care that he received. This was achievable because we talked to each other, listened to each other and planned with each other. We gave him a wonderful farewell; an open means of communication helped bring the many family members closer together and enabled us to ‘share the care’.
Jan Cameron
