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An Interview with Kate Mulgrew

So, there should be some way that the family could get together with the neurologist and have that conversation, openly and frankly, about being vulnerable, about the possibility of becoming shattered, of a sense of uselessness and, certainly, a pervasive sense of guilt.  Everybody just wonders who is on first or who is at fault and what happened. If the husband survives the wife, he is usually in a state of absolute devastation.  So, I would say first, to make sure the family gets to see the doctor together; and with the doctor attending, should be a psychologist so that the family, in a reasonably relaxed environment, can have this open conversation with all of the men present, and come to some sort of a strategic game plan at that meeting.  Do you not think that sounds like a good way of doing it?

Gary Barg:  Absolutely.  It is professionalism.  That is what we talked about—fairly standard—of getting family caregivers to see themselves now as a manager, as a professional.  It is the most loving profession because you could still have a lot of pain; but you have to have, as you say, good strategies to do it.

Kate Mulgrew:  Caregivers have to deal with everybody and they have to understand everybody’s dynamic.  Not only are they dealing with the medical team and the neurologist and the pathologist and radiologist, whoever.  They have got the father, their brothers, their sisters, the aunts, whoever is on the outside, and they have got their own people, their loved ones.  And their loved ones can be in peril by this if everybody is not very careful. What the caregiver suffers very quickly is depravation of sleep, and usually depravation of well-being, because she is so isolated in that situation.  Somebody has got to pick her up at least once or twice a week and take her out of it. And somebody has got to get the thought out of her mind that she is indispensable.

Gary Barg:  What do you hear from the family caregivers as you travel around and talk to them?

Kate Mulgrew:  I hear this sense of beleaguerment.  They are tired.  They do not feel the community is recognizing the extraordinary value of what they are doing.  I had a woman just now come up to me in tears and say nobody has said anything like that to me ever.  I was just about to give up.  Well, the people who should be saying it to her are the people for whom she is working, or her family—whoever it is.  She cannot be alone; never allow the caregiver to be isolated in that situation.  She will become quickly depressed, and then you have two severely depressed or afflicted people who cannot help each other.  If you are asking someone to do this Herculean thing, caregiving to someone who once was a very vibrant human being and is now sort of paralyzed in every way, you have to do everything you can to make sure that the caregiver is served in kind.

Gary Barg:  What is holding us up from finding a cure, from finding solutions, from making this a front burner issue?