Gary Barg:  You are an advocate for the Alzheimer’s Association.   Could you tell us how you got involved and what your feelings are?
Kate Mulgrew:  I clearly got involved because it has affected me personally.  My mother died of this disease about four years ago.  It took her about nine years to die.  I thought that the journey was so significantly awful that if I could elucidate it for anyone else, if I could somehow clarify it or ease it, I needed to step up to the plate.  So it is a small, but I hope, an important way of giving something back.  My mother shaped me.  If I am anything, certainly in terms of my goodness, it is because of my mother.

Gary Barg:  Tell me about your mother, Joan.  She was a magnificent artist.
Kate Mulgrew:  She was a wonderful artist; but more importantly, she was the mother of eight children.  She was an iconoclast.  She was a maverick.  She was probably the best read person I have ever known.  She was amusing.  She was irreverent.  She was smart.  She was marvelous.  We went all over the world many times.  She never missed a shoot.  She never missed a play.  She never missed a performance, and that is something to say when you have seven other children.  She was not unfamiliar with great sorrow.  She buried two of my sisters, which I think does not play a small role in traumatizing the brain in some way.  All of this will be discovered; all of this will be unearthed, I hope in our lifetime, Gary.  At any rate, she got this disease when she was 70-71 and it was just downhill.

Gary Barg:  What are the great challenges you see for Alzheimer’s caregivers?
Kate Mulgrew:  To understand that they must take care of themselves.  To understand how appreciated and important they are.  I think they just do not get it because nobody tells them.  A lot of them are treated like indentured servants and it is just absolute nonsense.  I’d like somebody else to try it.  I did it and failed, but I watched my mother’s caregiver with absolute amazement.  These caregivers are extraordinary.  It is a great gift.

Gary Barg:  You talk about your mother’s caregiver, and how she made even the rituals special.  What did you mean by that?
Kate Mulgrew:  Everything she did was excellent.  Everything was beautiful.  It was not just an egg.  It was an egg with a flower in a cup on a perfect doily with a linen napkin.  It was a crystal glass.  It was bubble baths.  In the distant recesses of what was left of her brain, my mother responded to that.  I think if you add this note of grace, the burden will be lightened. Caregiving is not fun; but I think if you say to yourself, I am going to do this with the hands of an artist, you lift it all up.

Gary Barg:  Did you learn new ways to communicate with your mom once Alzheimer’s disease started progressing; different ways of reaching her, talking and sharing with her, and making her feel better?
Kate Mulgrew:  Well, of course, you do that for as long as you can.  A lot of it is instinctive, right?  It is the same language we communicated with when I could not speak, when I was a little, tiny baby and she was the mother.  So, all of this is very primitive.  It comes back when she is relegated to that position, and then you just go to that very fundamental place.  But in the end, when there was absolutely no cognitive, I would just stare at her and hold her.  I touched her, and I could see the level of isolation; that is the closest word.

Gary Barg:  I agree with it.  I think love is the last thing that goes.  Touch; people always need to be touched and held. When my mom would walk into the room, my grandfather, who was pretty much at the end stage of Alzheimer’s, would smile.  So these are things we cannot ignore.  You talked earlier about getting families together, the brothers, the sisters; not just having one person be tag, you are it, the caregiver.  Do you have any advice on that?
Kate Mulgrew:  Right.  Well, there is a reason why it usually falls to the oldest daughter.  She understands this kind of service.  She is not afraid of it and she accepts it, having been the surrogate mother herself; but she will get tired very quickly.  I think the group to appeal to are the men.  This is a group that needs to be educated.  There are exceptions, of course, but most men are problem solvers and they think that they can solve it.  They cannot.  They have to accept it. 
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?
Kate Mulgrew:  I do not know.  We talked about it at breakfast this morning. I think it is fear.  It is awfully difficult to confront your mortality in this life.  It is one thing to know that you are going to die in a war, die of cancer, die in childbirth.  It is another thing to know it will take you 10 long years to die and that, slowly but surely, you are going to lose everyone in your family.  So we have to overcome that fear.  It is our duty as a society to harness our energies, to lend our resources, and come to grips with the fact that this must be dealt with now.

Gary Barg:  You speak about the clinical trials. What is holding us up from producing appropriate clinical trials?
Kate Mulgrew:  Well, you know as well I know, there is not enough funding.  Why is there not enough funding?  For exactly the reason I just said; and also because it is an ugly disease.  It is viewed as an ugly disease.  It is not glamorous.  It is not sexy.  There will be a death and it will be terribly unpleasant, but it is going to be altogether more unpleasant if it is done without the dignity it deserves.  So we have to get the funding.  We have to go to Congress.  We have to go to the Hill.  We have to go to one another.  I travel around like this.  You have got your book.  You keep doing your thing. 
Let us get a little stirred up now.  Enough of indolence and passive behavior.  Everybody is very interested in their galas and their luncheons and their balls, and where is the money?  I need the money for the clinical trials.  We need the money to find this cure.

Gary Barg:  What is the one piece of advice—if you just had one thing you can report to the family caregivers—what would that one nice important piece of advice be?
Kate Mulgrew:  Whatever else you are doing, I would say to them, reach down deep and acknowledge that you are extremely special.  You are one of the exalted ones.  In your exhaustion and in your occasional moments of despair and when it looks like nobody else gives a damn, you have to know, in a sort of mystical way, that you are indeed an exalted one. 

Gary Barg:  Thank you Kate.