Caring for caregivers: Doing the right thing

During the last few years I have noticed that more and more of the requests that I have been getting either directly through family members in my clinic or through referrals through the hospital are from families who are struggling with difficult decisions. What makes these issues somewhat different from what I have experienced all throughout my career is the way the family member is framing the problem. It has moved away from just being a clinical challenge – i.e. choosing the right treatment, but a more existential and maybe ethical framework, often couched in terms such as, “I/we want to do the right thing.”

After I completed my Master’s degree in ethics in 2001, I became more involved in the formal activities of the ethics committee, where clearly some of the issues were framed in the terms noted above. What I see as the difference is that family members are beginning to think in those terms not just when there is a major challenge, an end-of-life decision for example but when less dramatic issues are at stake.

I find that this change is refreshing and important for families to think in those terms because eventually when everything is over it is important to be able to feel comfortable with the decisions that have been made which cannot be changed but have to be lived with.

An example was a family meeting I had with the children of a couple that I had always seen alone with the wife being the primary caregiver of her husband who had progressive dementia. All along the wife was adamant that she would keep her husband at home as long as possible and that her choice was to have him remain there until the end. I would bring up the subject from time to time and tried as I always do to frame it as planning for all eventualities.

On one visit where clearly he had shown some further cognitive decline she described some behaviours of his that she found disturbing as they were directed at her. We discussed treatments but I found that she looked somewhat haggard and I suggested that perhaps we meet along with their three children who up until now she had kept out of the interactions with me but clearly they knew what was going on.

We met, her and her three children. It was clear that the children were worried about their father’s decline but no less so what was happening to their mother. They admitted that he was getting at times agitated and seemed to be focusing his wrath at her and she had problems coping even though she knew intellectually that she should discount what he was saying – but she could not and what he sometimes said was very hurtful to her.

The focus of the meeting had two parts – the first was any interventions including medication that might be helpful to his behaviour and I discussed the options with the benefits and risks which is always part of that discussion – none of these potent medications is not without some potential risk – but again so is the behaviour.

Then the harder part of the discussion – the what if the medications are not sufficient as well as other means which were discussed to defuse the situations or getting in more help to give her some respite. The question of admission to a facility of some sort was raised – and it was framed by the wife as “doing the right thing”. She felt an enormous sense of obligation and duty to him and said that they had always agreed to stay at home should such a situation occur – when they discussed it years before. Much of our current discussion was coming to terms with the implications of his care needs and the impact on her – with the reminder that if as I often say, “If you fail, he fails, so part of our goal is to preserve you, so that we can preserve him as well as we can.”

She looked quite bereft as the meeting went forward but with the help of her children she came to realize that they would not think of her as having failed their father if the need were to have him admitted to a suitable facility. I reminded her that even if that were to occur, she would still be very much involved, but at the end of the day she could go home and recharge her batteries which she would need for the long haul. She kept saying as the meeting progressed, “I just want to do what is right you know – we had really talked about this and now I feel I am failing him.”

Her children were able to assure her that they felt she was doing the “right thing” as ultimately it was him they were concerned about but they had to be concerned about her as well. That seemed to assuage her guilt as we agreed to move forward with our plan and see if we could bring it to fruition with as little anguish and pain as possible. All of them were indeed, trying to do “the right thing” which is as much as anyone can strive to accomplish in the enormous task of making such difficult decisions.

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Dr. Michael Gordon is Medical Program Director, Palliative Care Baycrest Geriatric Health Care System in Toronto, Canada and Professor of Medicine, at the University of Toronto. He is co-author with Bart Mindszenthy of Parenting Your Parents. Parenting Your Parents is available in bookstores and online at: Indigo-Chapters, Amazon and Barnes & Noble. Or visit the official website of Michael Gordon, MD, MSc, FRCPC.