Deceased 7:00 pm April 24, 2016
I am not a doctor of anything, phycologist or a writer, just a man who has been on a journey with the love of his life, which then had a very unfortunate ending.
In writing about this journey it is my intent to try and pass on the lessons learned so that others can hopefully be better prepared, though it is never enough.
Diana and I were married 28 wonderful years. Yes, we had rough times and it seemed that everything we did had to be done the hard way. When I started my business she provided unbelievable support of every kind, even learning how to do book keeping which she hated. Unfortunately, until 9 years ago she smoked. After many attempts to quit she finally achieved that goal and we were both very proud of her. Her motive for quitting was to try to make sure she lived on so that we could grow old together and see any grandchildren grow up.
Unfortunately, 4 years later Diana was diagnosed with emphysema, a great blow. After dealing with many doctors she became reliant on many medications and oxygen in order to maintain some semblance of normality and she was finally referred to the wonderful rehabilitation centre, Westpark in the west side of Toronto. Three summers she was taken in as an inpatient where they trained in such matters as how to breathe properly and how to do normal everyday tasks. Each time she went in she seemed to come out better than when she was admitted.
Unfortunately, twice within that time frame she had two respiratory arrests in the middle of the night which required me to start CPR while waiting for the ambulance. There is nothing like being woke up at 3:00 am to watch your spouse collapse to the floor unconscious and not breathing. The good part is that in both cases she was revived and we were blessed with those extra years. I bring this up because it was the beginning of the realization by both of us, that I had taken on the care giver role and as a result we became even closer.
At the time of diagnosis, we were told that the average life span of an emphysema patient is 3 to 5 years, but no one believes that it is true for them.
Unfortunately, as time progressed Diana’s condition became more complex and perilous. The effect on quality of life was substantial and the ability to do daily tasks increasingly difficult.
Then finally, the opportunity to have a new lease on life came in the form of being eligible for a lung transplant. In order to understand what this really means you need to understand the commitment required and the process. An understatement would be that it is long and complex. However, the main point is the commitment and the physical work by the patient to get and stay on the transplant list. Conflictingly, there is a requirement to be sick enough but strong enough to undergo the surgery. Therefore, a consistent regime of physiotherapy is required in order to evaluate and increase strength. In real terms this meant three physio sessions a week as well as regular doctor appointments and clinics. A commitment that meant both of us changing our life style. The business and its related work load was made secondary. A very distant second place. If she was putting her life on the line, then I must as well. We were in the journey together.
Throughout our marriage we lived by a simple creed, put the others needs before our own. This made us try and anticipate and understand what the other was thinking. We were connected and in the end it proved invaluable. Aristotle defined this as true friendship, I define it as true love.
This was a large part of the decision making of whether or not for her to proceed with the transplant. At all times it was her decision and either way I would have fully supported. Diana knew she was dying and her quality of life was waning quickly.
The topic of whether she was Selfish or Selfless can be argued both ways. She was selfless in that she wanted to have her grandchildren experience her and for our love to continue and selfish in wanting to see her grandchildren and our marriage and love grow. I believe she was being selfless because that was her nature.
The lesson here is don’t be afraid to take the chance if there is a possibility or hope of an acceptable outcome.
Finally, on January 30th we received “the call” and she had a double lung transplant surgery on January 31st. She never came home again.
During her course of time in the hospital many events occurred which brought all of these these factors into play. Approximately two weeks following her surgery Diana’s father, Walter, passed away. In her best interest I was advised not to tell her until physically she was better able to accept the news. I kept this from her for about four days, a very difficult thing to do. Finally, I did tell her and she had as such a normal reaction as could be expected. Approximately four weeks following that, my father passed away and I never did tell her about that. It was not in her best interest.
During the course of her stay, her condition initially improved over the first three weeks where she was moved from MSICU to step down ICU and then to the transplant ward. It was while she was in the ward that I told her about her father. However, about a week later, complications started to occur and unfortunately she was transferred back to MSICU where she remained.
The point here is that unlike other hospitalizations that she had been through, we were not informed that there would be frequent moving of patients, even within a ward. Even though rooms in MSICU were supposed to be the same they were not, sounds and views from the room varied. Finally, when back in ICU I had to emphatically state that I did not believe it was good for her to be changing rooms. There was no consistency or anchor point for her. Be ready for relocating.
I also have to point out that regardless of what you have read or heard there are no timelines for recovery. In one of the transplant manuals there was a statement about a 3-week recovery time. Unfortunately, when the three weeks had passed and Diana was not getting better she regarded herself as being a failure, not a good thing to happen. Talking to others revealed that the “norm” was significantly different than in the manual and this was emphasized to Diana. Have no expectation of timelines.
During her stay in hospital it became my routine to be there every day, and night if required, to provide support, help and where needed to be her voice. It was all about her!
We became the “talk of the town”, the tantamount love story, as I was told by staff. As a side note it is a surprisingly sad thing how many patients have little or no visitors. It cannot be understated that all Staff were incredibly good, from the medical teams to the cleaning staff, all very personable and genuinely wanting to do what was best for their patient.
I made a point of engaging all staff and ensured that I was there during “rounds”. I wanted her to change from being a patient to being a person in their eyes. I believe it made a difference. Every patient must have an advocate or voice. Since Diana was unconscious or unable to communicate much of the time this was essential. I must emphasis that “rounds” is a good time to be there, it is where you get the most information from all teams involved, learn the daily plan and be able to ask questions and get answers. Remember though, staff talks a different language so there is some learning involved.
Not only does the Patient always need an advocate, the Caregiver needs an advocate as well to watch out for them. Since as the caregiver you are so emotionally involved you don’t always hear what you are being told or that because your focus is on your loved one, you don’t hear what is being told about you. Find a support system of your own. I was fortunate to have a supporting sister in law, very close friend, daughter and son. I found the failure in the system and my own support. I felt “abandoned” by the system after she passed and there was no
process in place to catch me as I fell. It really does take a village to maintain a family, not just raise a child.
It is interesting to note the changes that I went through visiting each day. I tried to go in to the hospital each day having no expectations of what I would see. I tried to pass on this sentiment to family around me as well. This helped on the days when Diana’s condition had faltered and made her good days even better. We learned to accept and cherish the good moments, minutes and hours when we got them.
Initially I looked at the machines, checked the numbers and made the mental comparison to the previous day’s. It took a while but I finally came to the realization that the numbers only represented that moment in time and had no real bearing on what was happening and only a mild indication of a trend. It was her physical “being” that was the better indicator and even that changed from minute to minute and hour to hour.
On the days when she was deeply asleep or unconscious, I found it almost calming, maybe it was my thinking that while in that state she was OK and not in any mental or physical distress.
Needless to say the time was an emotional rollercoaster ride of unimaginable proportions. Its ok to show emotions. Socially through history, men have typically not been able to show any emotion. Today it is now ok to cry and it will happen many many many times through not only this type of journey but in any part of a relationship.
Strangely I never had any sense of anger towards anyone or anything or even that it happened. Anger has no place, only love and final acceptance. Anger is destructive to yourself and to those around you.
The emotions I did have ranged from, watching with a total sense of helplessness, guilt, grief, worry, anxiousness to name a few and then finally loss, an incredible sense of loss.
I cried when the call came from elation, I cried when she came out of surgery and was told everything went well, I cried every time I had to leave her in the hospital, I cried every night I went to bed alone, I cried every time she was lucid and we could interact, I cried when it waned, I cried while she left us, I cried when she died and I have cried every day since.
During the time up to her becoming listed for transplant and during the many trips to the hospital, Diana and I had frequent discussions concerning what her wishes were in an acceptable life and for her after death. Throughout her time in hospital time, I kept that tantamount.
It was all about Diana and what her wishes were, and what was best for her that matched her wishes. There is no dialogue as to the morals or ethics of not allowing death. During her last few days she made it clear to me that her state was not acceptable to her and she made a clear message to me and her best friend and her sister as to what she wanted; to go “home”. She was what mattered!!!!!
Selfish vs Selfless can be argued both ways again, but in Diana’s case she finally put the needs of her family before her own knowing we would have to look after her and therefore she made the ultimate sacrifice for her children, grandchildren and for me.
The other lessons that came from this experience are now very apparent. You can never be too prepared for anything, and even when you think you are – you are not.
Learn first aid and CPR. You think it can’t happen to you, but yes it can! You need to be prepared early.
You need to be ready for the call, ready for the setbacks and ready for the end regardless of the outcome. As morbid as it may sound you need to plan for all eventualities, good bad or in between.
Have that very difficult discussion as to acceptable standards of life, whether or not to have a “do not resuscitate” or “no heroic measures” order, early with all relatives and those that need to know. Better yet put it in writing. This process cannot be emphasized enough and realize that your wishes may change as you become older or as personal circumstances change.
Maybe it was different for Diana and I since we had an unusual connection in knowing what the other was thinking and knowing and wanting, but I now understand loneliness. I feel I have fulfilled my purpose and I don’t know what to do. I need to fill that lack of focus and direction.
Diana always said that our house was not a home when I was away, now I get it!!
I understand and I have to think that she is in a better place, out of pain and at ease.
But, is her journey over??
Her Loving Husband