Grieving for Claudia
It is October the 12th , 2004. I lost my wife to cancer one month ago. Her name was Claudia. She was 60 years of age. We were married for 38 years. We were both active and, otherwise in good health. We were very close.
Claudia became overtly ill on the first Monday in August after feeling a little run down for a few months. We received news that it was some form of malignancy two weeks later and on the 26th of August were told that she had metastasized melanoma and her condition was untreatable. She died at home a little over 2 weeks later.
In mid August we were in the emergency room when we were first told that it was cancer. I broke up instantly. My mother had died of intestinal cancer when I was 19. It was a series of dashed hopes with many operations, many setbacks and a death that came agonizingly slowly. It was a very painful experience and the thought of anything like this happening to Claudia was unbearable. Claudia remained composed, and explained to the doctor that my mother had died of cancer. That was the moment my grieving began. The life of the person I cared most about was in jeopardy and I was helpless.
Looking back, we must have had a sense that she was dying. She had been wrapping up loose ends, tidying up her life. She had an increasing desire to withdraw from her friends. She was forcing herself to participate in social events, and honor her obligations in her last few months. She talked of needing a long rest and a complete change as soon as her big family reunion on the August long weekend was over.
So when we got the news, at some unconscious level, it was not a surprise. But it seemed to make the impact even greater, like some vague suppressed fear becoming real.
In the weeks that followed, my life became totally focused on her care. She was a good patient. A week before she died, she said quietly “Oh Hart, I am so sick”. That was as close as she came to complaining or feeling sorry for herself. I was very busy, especially toward the end. We could not fight the big battle, but her palliative care gave me something positive to do for her. It kept me from getting caught up in my pain. I had many teary moments, but I didn’t have time to really let go. There was too much to do; hundreds of phone calls to doctors and friends, medications to buy, meals to make, giving her medications on time, laundry, paying bills, and on and on.
And that continued after her death. She died at 11:20 PM on a Sunday night. The doctor came at 2:00 AM that night and left at 4:00 AM. The day nurse was to start her first session with her at 8:00 AM Monday morning, and we sent her away. They came for her body before noon. Then there were more phone calls to friends and relatives, the arrangements, the cremation, the memorial service and the houseguests. No time for reflection. Grieving was happening in the tiny spaces between the events.
Then Ted and I were alone and left to carry on. My son, Ted, is 32 and lives at home. My eldest son, David, is married with a new baby and lives near by. I had told Ted on several occasions before Claudia died we were going to make the best of it. And so we started. The first thing we did was to make a list of lists to deal with all of our day-to-day problems; meals, shopping, thank you cards, bill paying, gardening, washing clothes, cleaning house, and having fun. We have now made our lists and are getting on with the business of living. This was very grounding for both of us. We have begun taking control of our new lives at a very basic level.
There was a period early in her illness when my motivation to carry on without Claudia faltered. For a short time I would have preferred to end my life with her, but dismissed the thought for the pain it would cause our sons and our friends. This was a thought, not coming from depression, but rather a continuation of the intimate sharing that our relationship was about; a last trip to together. It became clear to me that there are many people around me I care about, and that care about me, and suicide would be the ultimate selfish act.
Claudia has been the motivation for most of what I have done with my life. We raised our family, built our house together, and saved for our future. She directed our social life. My time with her relaxed and recharged me. She cared for me and fed me. Our hopes and dreams extended well into the future. Her death has left a gaping hole in my sense of who I am and what I am about. It is tough being without her.
I wrote a letter to Claudia in the middle of August acknowledging and thanking her for our wonderful 38 years of marriage. In it, I said she should not worry about us and that we have the strength to carry on. I later promised we would remember her with joy, not sadness. These are commitments that I cling to now. They give me direction. It is taking time and we are not there yet, but we have our moments.
It is hard to know how much room to give myself for feeling sad and weeping. When does it become self-indulgent? I have always been one who cries easily. I am crying as I write this. It happens in surges that last a few minutes and subsides. It happens when I am driving, hiking, eating an apple, when I wake up at night, or talking to people. There are all kinds of thoughts that trigger these surges; seeing her paintings and photographs, the sight of her clothes, remembered touches, and things she said. For me, “Oh Hart, I am so sick.” is a big one. We had always taken good care of each other and this triggers a profound feeling of helplessness. I was her main caregiver, and all I could do was to be with her and give her drugs to ease the pain and give her more drugs to ease the side affects of the pain drugs. The disease was untreatable and moving quickly. We made the best of each day, but I knew I was watching the inevitable death of my best friend and lover and the death of a huge part of my own life. There is nothing romantic about dying at home. It is very painful to watch. She died with us at home because this was as good as it gets. My challenge now is to completely accept this, to give up the tragic story and be at peace with it. It is a big mountain to climb.
I think I am beginning to understand the process of grieving. I know, for example, in writing this piece I am revisiting memories or thoughts that trigger intense sadness and tears. I am, however, choosing to write this. Why? My guess is that I am simply working on acceptance. Perhaps by sharing it, someone may benefit in dealing with his or her own grief or someone may offer me some new insights in my own struggle.
I have come across articles recently that suggest that emotionally generated tears flush stress related hormones and neurotransmitters out of the body. For now, this is probably is a natural way of relieving stress for me. With acceptance, my stress will diminish along with my inclination to cry. I will give myself time.
I am also aware that the process of creating my story about the events of her death sets up values and attachments that affects how I grieve. I avoid thoughts like “It’s not fair. ” that paint myself as victim. I must accept life as it unfolds and make the best of it. As I see it, the notion of fairness is valid only in interactions between people. It’s strictly a social issue.
I am thankful for all that assisted us through Claudia’s last days. Hindsight will always reveal things that could have been done better. Rather than using hindsight to blame others and myself, I have written of my experiences. I am aware of the catastrophic consequences blaming others for past events. This implicitly portrays myself as victim. There is no way out. Even if others admit mistakes, it only confirms my status as victim. The whole thing is a way of avoiding responsibility and acceptance. It is totally disempowering and provides justification for a long and miserable grieving. I chose not to go down this path.
I do not believe in any traditional idea of a God that answers prayers or punishes sinners. I am, rather, aware of the awesome beauty and unknowable complexity of life and all that is around us. I believe we exist in a magnificent paradigm that transcends human concerns. It does not require a creator with purpose or intent. Purpose and intend are the domain of mortals. I do not feel any need to ask why or how. For me, it is simply what is so. It is a privilege to be a participant and a witness. I see myself as an infinitely small, but essential, part of all that was, is, and will be in this universe. I am fortunate to live in a stable caring society with ample time for reflection. Reincarnation, heaven and hell, and life after death are issues that do not concern me. There is or there isn’t. We all find out. It’s that simple. For these issues I do not turn to organized religions. They give me no comfort, only notions and concepts tainted with human frailty. Notions like “be good or you will go to hell” are manipulative and repugnant to me. There is a much better reason to be good. It is the essential ingredient for love, friendship and happiness. My focus is now on those around me. They are my key to moving beyond grief, and, in fact, the quality of my relationships the key to everything I hold significant.
My notions of spirituality are personal and serve me well. I am at peace. I have not shared them with any intent to be disrespectful of other beliefs or of organized religions. This is simply my solution to the riddle of life.
My sons have coped admirably with Claudia’s death and have been a great comfort to me. I have written on my experience of palliative care in hope that it may in some way improve the ability of others to care for a loved one. I have also shared the collection of letters written by friends and myself to Claudia in her last days. They formed the basis of her memorial service. They were very moving and touched many deeply. Claudia was a wonderful caring person with many friends and a wide range of interests. The letters revealed unknown facets of her life to all that read them. This has allowed me to create something positive out of the experience.
Last Saturday, Ted and I were invited out to friends for diner. These were close friends that Claudia and I had known for many years. This was the first time that I have been able to talk in detail of Claudia’s death and the palliative care experience without crying. I think this is a good sign. Today Ted and I have invited my son David, his wife Seline, their baby Daniel, and Mahnaz, a long time friend of Claudia’s, over to our home for Thanksgiving diner. I think this is a good sign too. Our healing has begun.
Claudia’s influence on my life is indelible. She will always be a part of me. I know she would want us to get on with our lives, as her mother and my father did following the death of their partners. We are taking our first steps.
Last Days with Claudia
My experience as a palliative caregiver
It is 20 days since my wife, Claudia, died. She had not been feeling great for a few months prior to becoming overtly ill, but still carried on fairly well. Twelve years ago she had a melanoma removed from her right buttock but there was never any indication of a recurrence.
On August 3rd she asked me to take her into emergency complaining of exhaustion and chest pain. X-rays revealed pleural effusion around the right lung with multiple masses on her pleura. It took about 2 weeks to get the results of a biopsy of the fluid. It showed signs of malignancy, but they were unable to determine the type of cancer. She returned to hospital for a procedure to remove all the fluid around her lung (about 3 liters), to seal the pleural membranes and to take a biopsy from one of the masses. We got the results of this biopsy at the Cancer Clinic on 26th August 2004. It revealed metastasized melanoma, a non-treatable cancer with a very poor prognosis. She died at home, in the company of my two sons and myself, 17 days later on Sunday, September 12th, 2004. She was 60 years old. We live in Kanata, Ontario, Canada.
Palliative care at home was the obvious choice for us. We felt there was no better place for her to spend her final days than with family in her familiar settings. I was fortunate in that I was able to reduce my work involvement to almost zero, and could be fully committed to her care. This was my first experience with palliative care. While we all did our best, there were many things learned and things I would do differently. I hope by sharing our experiences it may make it easier for others who find themselves suddenly thrust into the roll of palliative care provider.
What kind of commitment does it take?
Being on the front line as palliative care provider was the most intense experience of my life. For me, it became a 24 hours, sleep when you can, highly demanding commitment of indeterminate duration, in an unfamiliar role, with a huge emotional involvement. There was a lot at stake. The demands increased until finally my best friend and lover died. I was consoled only by the fact that I gave her the best I could. I lost 10 pounds in Claudia's last 5 weeks and I was only 155 pounds to start with. I haven’t been that weight for 47 years.
It is important to keep in mind that the aim in palliative care is to keep the patient free of pain and to make the last days as enjoyable and comfortable as possible. The larger issue of a remission or healing was out of our hands. We always acknowledged the possibility of a remission, but it was clear that this was unlikely. We did not waste precious energy hoping or praying for a cure. This would have been exhausting, as day after day the decline was relentless. We focused, instead, on being as relaxed and as comfortable as possible, enjoying our time together and accepting each day as it came. In any event, I think that being more relaxed and at peace actually increased the chance of a remission occurring.
Who is in charge?
The answer to this was a surprise to me. Claudia and I were in charge and it took me a while to realize it. Claudia’s care did not fall into place automatically. Our experience revealed fractures and discontinuities in our health delivery system. We did, however, find that the various pieces were excellent. The tough part was getting it to all come together as quickly as we needed it. There was a lot we did not know.
My experience as palliative caregiver
When we attended our first appointment at the Cancer Clinic on the Thursday, the 26th of August, Claudia was very weak. This was to be the first of three appointments, this one with a radiologist, the next for a CT scan on the 31st August and the last with a medical oncologist on the 15th September. I tried to have the appointment rescheduled or have a doctor come to the house. This was not possible. Her options were to be admitted to hospital, come in for her appointment, or lose her priority. She got out of bed and I drove her to the appointment. She started vomiting as we wheeled her into the hospital, and was in a state of exhaustion. At the appointment we were told that she had metastasized melanoma and that radiation treatment would not be effective. By the time we got home, she had lapsed into an incoherent state for where her ability to express verbal language became totally scrambled. She kept repeating things using strange words and syntax, and was very frustrated that I could not understand. She returned to normal the next morning and recalled that it was as though she was speaking in some Scandinavian language. There was no way Claudia was going to attend any further appointments.
I was fortunate to have a friend who is an oncologist at the Cancer Clinic. He came over to the house on Saturday, the 28th , and spent a couple of hours with us. This was invaluable. He told us that Claudia’s cancer is non-treatable by any means and the prognosis was very poor. CT scans and further appointments could determine the extent of the cancer but would not change the fact that there is no viable treatment. The oncologists were specialists and would only treat the cancer and not the overall well being of the patient. He told us to turn to our family doctor and have her arrange for a palliative care doctor. I cancelled all further appointments at the Cancer Clinic. We had now stepped into the realm of palliative care. We knew her end was near, but we did not know how near. It could be months, weeks or days. We had no idea.
Claudia had not seen our family doctor for some time, what with holidays and visits to the emergency rooms on weekends, but she had been getting copies of all the tests, and was aware of her condition. I called her Monday morning. She came to our home to see us later that afternoon and set us up with Dilaudid tablets every 4 hrs (day and night to be taken with food) for pain control, and we continued with Gravol capsules for nausea. The palliative care doctor that Claudia preferred was not going to be available until the middle of September. She was highly recommended and this seemed fine at the time.
As the week progressed the pain medication became ineffective and I called the doctor to get longer acting and stronger drugs. She switched us to morphine capsules twice a day with the Dilaudid used for breakthrough pain. At first it was a great relief to be able to sleep through the night, but nausea soon became uncontrollable. After two and a half days of vomiting almost everything, I realized she was dangerously dehydrated. I phoned the doctor on call on the weekend through my family doctor’s Telephone Health Advisory Service and requested intravenous hydration. The doctor asked if we really wanted it this kind of intervention. I responded that I would not let Claudia die from nausea caused by a medication that was meant to make her feel better. We started intravenous hydration and switched to 12hr Dilaudid capsules. The nausea was dramatically reduced. In hindsight, I would recommend that if one begins with a pain medication and it seems to work with minimal side affects, increasing the dosage using the same drug would be the best option. Even though morphine is widely used, some people experience severe nausea with it. If an acceptable history with a drug is established, don’t mess with it. I do not think oral nausea medication should ever be used in this situation. It cannot be effective if it doesn’t stay down. Suppositories or injections are a must.
At the same time I was directed through my family doctor’s Telephone Health Advisory Service to call Community Care Access Centre and arrange for home visits by the VON palliative care nurses. This is something I would have done earlier if I had only known about it. Not only did we get excellent palliative nursing care once or twice a day paid under OHIP, but drug costs were reduced to $2.00 / prescription. This was a godsend.
Later that week we switched to injectable Dilaudid for pain control and suppositories for nausea. One of my jobs was to see that Claudia took her pills on time. This became more and more difficult as she entered the stage of not being able to take anything orally – food, water or medication. The switch to suppositories and injections came after several days of desperately trying to coax her to get her pills down. This left me in the unpleasant position of forcing her to do something that she absolutely did not want to do. Had I to do it again, I would have switched to suppositories and injections well ahead of time for a much smoother transition away from oral medications. There was no reason not to, and a compelling quality of life reason to do it.
How we dealt with friends and relatives
The desire to withdraw is a normal part of the dying process and can start one to three months prior to death. This can be very frustrating for friends and relatives. After we received the final diagnosis, I encouraged everyone to write to Claudia as a way of completing and acknowledging their relationship, explaining that she was unable to receive visitors. The letters poured in and are still coming. Claudia read many while she had the strength, and I read some to her in the last days. They were beautiful. At her memorial service we read two of these letters and distributed a booklet with photographs and 17 letters. This was very well received and was therapeutic for everyone including myself.
The final days
As Claudia had started to fade physically and mentally, I realized I had no real understanding of the stages terminally ill people go through as they near the end. I asked one of the VON nurses for information of what I should expect. She gave me photocopies of two articles The Dying Experience by Barbara Karnes and How to Comfort a Loved One when Death is Near from the Bereaved Families of Ontario. I found these excellent.
Claudia's decline, especially in the last 2 weeks, was startling even for the VON palliative care nurses. Each step of the way we did our best. As Claudia's verbal abilities diminished, touch became important - brushing her hair, foot and hand messages, holding hands, a gentle kiss, a sponge bath, and of course, reading letters to her.
Terminally ill patients lose interest in eating and drinking, begin to have difficulty in swallowing and finally in Claudia’s case lose their ability to swallow. Their bodies and their minds shut down. Heart rate becomes progressively faster. Claudia's was up at about 130 for several days. Breathing became irregular gasping breaths at about 6 per minute with a vocalization on exhale. In the final hours a gurgling sound appeared, as her ability to swallow was lost, and the bronchi began to fill. Finally the breathing quickened and became shallow and finally stopped. This is not pretty and I would have been very grateful to have had a clear picture of what to expect before having to face it.
At 8:00 PM the night she died, I went up to give her an injection. Her breathing was irregular, gasping and gurgling, and she was comatose. I went downstairs to finish dinner and got very angry for the first time since she became ill. This had to stop. I had no idea how much longer this would go on. I wanted to end it so badly it hurt. This was no longer palliative care. This was pointless cruelty for her and for us. For fear of screwing up the lives of my kids I sat on my anger. If it were I in that bed I would have welcomed a little push. I went up and slept until her 10:00pm injection. (We always slept in the same bed except for her last night when we had a hospital bed installed in our bedroom. Amazingly, I actually got some sleep every night.) After giving her the injection I got back into bed, but realized her breathing had become much shallower and quicker. I got up and held her hand and wept. At 11:20 PM her breathing ceased. She was gone. I woke my sons and told them it was over. If I had had a better understanding of the final stages of dying I would have been more aware of just how imminent death was and I could have spared myself the anger and a compelling urge to assist her end.
Looking back
Palliative care is not an easy road, and I know most will find themselves thrown onto it with no experience, as I was. Terminal illness usually takes longer, and hopefully most will have a palliative care doctor, but there is no guarantee. It took every bit of energy I could muster. It also took a conscious effort to focus on the problems at hand and avoid blaming others or myself for things that might have gone better. I had no energy to waste. Staying positive was the only way. Everyone did their best every step of the way and my heart-felt thanks go out to all who assisted us through this process.
I hope this can be of some value any of you who find yourself on this path.
My adventure with Claudia lasted 40 years and I am grateful for our wonderful time together. We were very close. Knowing what I know now, I would gladly share my life with her again.
My healing has just begun and I find myself thrust into a new chapter in my life.