While “Pre-bereavement” is not a common term it is used to define the time between the diagnosis of a terminally ill condition and that person’s death.  The time before the death may be short or it may be quite long.  It is a time for hope, for understanding the illness, a time to seek out what is best for one’s loved one, a time for prayer and reflection but it is a most difficult time for the caregiver.

Our society has a difficult time dealing with the death of a loved one.  It is not a subject that we enjoy talking about.  The terrible news of a sudden and tragic death leaves the community in a state of shock, anger, resentment and misunderstanding.  All of us have ample evidence that all life is fragile at best and sometimes very short.  We all try to live our lives as best we can with the expectation of experiencing all the good that life can offer us.  When illness strikes our households we are suddenly confronted with the fact that the life of our loved one could be shortened.  We may discover that we have neglected some of the basic responsibilities in our relationships.  We somehow never got around to making our wills nor providing for the future should the illness prove to be serious.  At this desperate time of our lives caregivers must learn to understand the need to seek assistance early in the stage of home care.

Pre-bereavement care can consist of some very simple acts.  A visit, offering to sit with the ill person so the caregiver can have a few hours for themselves, making a dish that only needs to heated up, providing transportation to the Doctor, but mostly it is simply being there to help without being asked.

Sometimes this kind of help is not readily available in the community. Hospice Palliative Care is the only place that I know of where the term pre-bereavement is used.  I feel that it is the responsibility of the community in which we live to provide this service.  Perhaps more thought could be given to suggesting that our Faith Communities provide nursing care as part of their responsibilities.  This has been done in a few parts of Canada.  We all know that our Faith Communities are largely comprised of the older segment of our population so it would be reasonable to include such care as part and parcel of their services.     

After the death of my wife, Collette, I took part in the Walking Group Programme at Victoria Hospice.  The following year I was one of the founding members of the Bereavement Self Help Social Group.  In a very short time I met quite a few people who had experienced the death of a loved one.    

I can remember some of the first walks and some of the interesting talks we had.  I became aware that I now knew some very caring people who seemed to know how I felt without me going into too many details of my own experience.  We all had the same problems of a house that was now too big and what on earth were we going to do with all that furniture. Then there was all the stuff the kids had left in our garages and basements.  Some very creative suggestions cropped up such as politely asking the children to retrieve their stuff and working to a dead line.  We gave that up however because I suppose none of us really wanted to change too much in our lives at the moment.

As we got know each other a little better and became more trusting of our new relationship; the talk turned to more personal things.  We grew more comfortable in discussing the illness of our loved ones and the treatment they received, what was good and what wasn’t quite what we had expected.

After a time I noticed that discussions about the illness and the treatments fell into three quite separate situations.  At first I didn’t think too much about this but as time went by it became clear to me that there was a definite pattern of sorts about these stories.  Of course there were differences and I was surprised to hear how intense people’s feelings were and how difficult some folks found dealing with them.  Thinking back about my own experiences I should not have been surprised.

About four years after Collette’s death I started to keep track of what I had learned and gradually found a way of recording these stories and experiences.  I made no attempt to ask for information from my friends rather I just listened without judgment or comment on my part.

This is in no way to be thought of as some kind of a survey, rather I have tried to simply relate what I have heard from individuals.  The frequency of the stories does not matter at all.  The intent here is to simply remind all of us that every person may have had quite different experiences and we must learn from these stories that may be quite apart from our own.

This is what I have learned from the caregivers from the time an illness became apparent to the death of the loved one.  I hope that by relating what I have learned from my bereaved friends will be of some help to those who have had similar experiences.

First situation

Prior to knowing about the illness. A feeling that something is wrong because there has been a change in behaviour.  In the case of a man perhaps the weekly golf game is put off for some vague reason.  A woman may prefer to stay at home reading a book instead of teaching her girl friends how to play bridge.  The caregiver will somehow get a signal that something has changed.  The signal many be very slight and may only be recognized if repeated a few times.

A spouse that goes from a person that shared every single part of their day has suddenly become reluctant to discuss things in detail.  There is a feeling of secretiveness that was not there in the recent past.

Small changes in normal activities are noted.  Things that were easy to reach now need a step to reach.  From time to time a grimace may be seen and no explanation given.  When asked an inappropriate answer will be given with uncharacteristic abruptness.

Offers of help doing ordinary tasks are refused.  Vague remarks like, “it is nothing, I just need a good night’s sleep”, are the usual answers to offers of help. 

The caregiver now has been given one or more signals and being concerned suggests they seek some medical advice.  This is usually responded to in quite different ways and I am sorry to say on gender differences.

Some men, for reasons unknown to me, are somewhat reluctant to seek medical advice.  Note I said, “Some men” and I have the feeling this is an age bracket thing. I have noticed that younger men, like my sons, have no difficulty in seeking Medical advice.  That being said you should remember that most of the men I have met are roughly in the same age bracket as myself.   Women seem to be a little more conscious of their health problems and have less difficulty in asking for help from the Medical Profession.  Keep in mind I am just relating what I have been told.  As for myself I am known as the wimp in the family and frankly the Canada Medical Plan doesn’t owe me a thing.

I have identified three different scenarios.

First situation

The ill person decides to see the Medical Practitioner, alone.  Insists on seeing the Doctor alone. Instructs the Doctor to not discuss the visit with anyone. When questioned about the visit makes light of whatever is wrong and repeatedly insists there is nothing to worry about.  Questions about the visit to the Doctor are answered in a vague way but phrasing the answers so as not to worry the spouse or partner.

Results during the illness

When it becomes apparent that the spouse is indeed ill the caregiver is put into a difficult position. There is the terrible feeling of being left out of something that they have every right to share.  I have heard cases where folks have shared every moment of their lives together but when a serious illness appears the relationship literally falls apart.  The spouse feels they are not able to help and in fact they may feel their help is not required or needed. Any information given to the spouse is general if not downright sketchy.
If the Doctor has been instructed not to discuss the illness with anyone it places the spouse in an untenable position.  This situation is even more devastating if there are children.

Results after death

After the death of a loved under the above circumstances the survivour is left with feelings that are difficult to understand and to live with. The terrible feeling of them being left out of the situation and not knowing why. They were not able to help and in fact were prevented from helping. The information given to them was minimal at best and was totally out of the characteristics of the relationship. When and if asked the Doctor may still feel bound by the wishes of the loved one and will refuse to discuss the illness in any detail. The spouse if left with the feeling that more could have been done if only he or she had been allowed to share information. The spouse may have feelings of anger because of being left out of the care given to the loved one. Anger at the Medical Profession is quite common in such situations. The spouse has to deal with second guessing friends and relatives. 
Some people feel guilty at not ever having had permission to assist.

I have heard some heart rending stories that fit the above in exact detail however they are happily in the minority.

The second situation

The ill person goes to see the Doctor alone but shares all the information with the spouse or partner. 

Results during the illness

The couple attends the second visit to the Doctor and are both given the same information.  Some couples will have a list of written questions for the Doctor. They talk freely about the illness and what the future holds for both of them. Information is freely shared with the children, relatives and friends. The couple has feelings of being able to share the good and bad news freely. Plans for the future are made in a spirit of openness. The couple has confidence in the Medical Profession because they are included in all the decision making, together.

Results after the death

After the death of the loved one the survivour is left with the good feeling of having been part of everything that could have been done. There was no second guessing about the treatment or choice of Doctor.

Third situation

Both attend at the first visit to the Doctor.

Results during the illness

Because both attend the first meeting there is little chance for misinformation. The Doctor is then in a much better position to discuss the illness and the options available. There is a spirit of openness with the family and friends.

Results after the death

The spouse or partner, as in the second situation, is left with the good feeling of being part of the treatment and of knowing that everything that could have been done was done.

Some comments I have heard

I am sorry to say that in some of the stories I have heard the bereaved person never did have the opportunity of talking to the loved one’s Doctor at any stage of the illness.  The feelings of being left out are real and I suspect they may never go away.

Many people blame the Medical Profession for lack of information and other options.  The sad thing is that the patient, in most of these cases, has prevented the Doctor from speaking to the spouse about the illness in the first place.

Regardless of what has gone on before; the family once Hospice had been chosen to care for the patient the change is dramatic.  One hears comments like, “a great burden was taken off our shoulders, and there is no doubt in my mind that we made the right choice, our loved one died in peace and pain free”.

Very few couples had made it a habit of going to their Doctor together.  They may have the same Doctor but are seen separately.

Less than half of the bereaved were able to talk to the Doctor alone at some point in the illness.

Many people, to this day, are angry that they didn’t feel completely a part of the care until they came to Hospice.

Some people were not satisfied with their General Practitioner but had high praise for the Specialists and the Medical Staff at Hospice.

Many felt the Doctor’s discussions hard to follow and indeed both spouses heard the explanations differently.  It seems one heard one thing and the other heard something different.

Some bereaved people felt that they were given only half of the information necessary to make an informed decision.  A few felt the Doctor talked down to them.  Then one hears that no options were talked about and in some cases treatment may have been delayed.

When one considers that the Medical community has as the cornerstone of their responsibilities the words “First, do no harm”; it is a mystery some of them do not recognize that being curt, offhand and half listening is in direct contradiction of their Oath, “To do no harm”.  I speak from bitter experience.  

My comments

After reading over the experiences of my friends I have to say that I have shared most, if not all they have experienced in one form or another.

Collette was a private person and it was some time before I was allowed to talk to her Doctor.  However I insisted in a private talk and soon I was a part of the process.  I made sure Collette shared the responsibility of taking her medicine on time with me.

We also heard things differently and I resorted to asking one of our sons to be part of the discussions with the Doctors as the illness progressed.    

Collette had a major operation to remove a tumor from her left lung.  Unhappily the operation was as at best a partial success.  It was thought that a further operation would help but at the very last minute, in the Hospital, the Surgeon had to tell us there was nothing more to be done.

I will never forget the poor man sitting close to my dear Collette on the bed and with tears in his eyes telling her that he could do nothing more for her.  Collette after hearing the very worst news a person can hear simply put her arm around his shoulder and comforted this caring gentle man.There are some things in my life that I will never forget.

Recently I had an experience concerning Pre-bereavement that touches on another side, if you will, of this part of our lives.

A dear friend and neighbor of ours is very ill and is at home recuperating after a very serious operation.  We have learned that her life will be quite short but she has a strong spirit and is trying to be as independent as possible. Her husband asked me to stay with her while he went to see his lawyer about their estate.  I came into the house and the husband was beside himself because his wife flatly refused to have a “baby sitter” in the home.  He and I talked the situation over and I agreed to sit outside the house in case she needed me.  I sat on a bench in the front yard trying to make some sense of all this before my friend returned home.  It finally dawned on me just what was going on.

This proud and courageous woman has been left with very little control over her life.  Simple household tasks are now beyond her but there were some things she can control and not having me act like a “baby sitter” is one of them.  When my friend got back from his errand we talked it over and he and I began to understand that he, by asking me to be in the house without first asking her permission, had taken one more bit of her independence from her.  Of course he thought he was doing the right thing but he forgot to ask his wife for permission.  He immediately go up went into the bedroom apologized and received one of little smiles that us husbands recognize as saying, “I forgive you but don’t do it again”.  He then wisely came back outdoors and we continued our discussion.

We sat there and after agreeing that us husbands are indeed a sorry lot; he told me a story.

Their daughter had recently paid them a visit.  Because she is concerned about what her Mother can and can’t do, she took it upon herself to rearrange things in the house and more particularly in the kitchen in a way she thought would be helpful for her Mother.

The results were predicable and immediate.  The Mother now had no idea where her things are and lets every person know all about it. My friend is now racking his brains to put everything back as it was.  Believe you me this is not a man thing!

Another little lesson learned

It is so easy to do the wrong thing for what one believes to be the right reason.         
But life being what it is I have learned that there is a bit of humour in just about every situation  A friend of mine wrote an article, “Let caregivers define their breaks”, in which she encouraged caregivers to take a “stolen moment” for themselves now and then.

Here is my stolen moment.

Collette wakened at exactly seven in the morning and was as hungry as a bear and some days just as cranky.  My job was quite simple.  Hurry down to the kitchen, make breakfast and get it up to my starving wife as fast as I could.  Then I would prop her up in bed, make sure everything was as she wished and keep her company while I managed to get a cup of coffee for myself.  Then it was tidy up time, de-crumbing the bed and so on.  Time for her to rest and time for me to finish my breakfast, tidy up the kitchen and sack out on my favourite sofa.   You have no idea how much I looked forward to my stolen moment on that sofa.  I used to play a little game to see how fast I could get my chores finished and get down on that sofa.

What I remember most is how pleased she was to have me caring for her.

Collette was ill for some two and a half years.  Most of that time was good for us and I enjoyed looking after her.  In many ways her illness was a special time of our lives together and it was our illness not just hers.  I have had many men and women tell me the same thing but of course in many different ways.

When you are reading of Collette and my journey you will have the sense that we were blessed with not only the Help of Victoria Hospice, but that of our family and some of our closest friends.  I wish it has been the same for all of our friends but sadly that is not the case.  Because the faith community Claire and I belong to has an aging population we are very conscious of the need for pre-bereavement.  Unfortunately the serious illness of anyone, at times, is perceived as being just bad news, as it were; instead of an opportunity to help. But it is not fair to judge people’s thoughts by their actions in a situation when they are unsure of how to help; rather we could ensure they know how to help.  Even making sure the community is aware of a person’s serious illness is difficult but it must be done if meaningful and timely help can be given. 

In the last twenty years Canada has gone from almost no Palliate Care to speak of to now where there is Hospice Palliative Care in almost every Community of any size.  In this brief time this unprecedented growth is mostly due to the word of mouth messages of the bereaved.  We have to remember that change only comes when people see the need for change and act on their needs.  I am sure that every person in Canada wishes their loved one to have a peaceful and pain free death, and this comes closer to reality every year

The next step is awareness for pre-bereavement.  Somehow we have to convince our communities that the care of the serious ill is the responsibility of all of us and not necessarily that of the medical community alone.