Coping with Alzheimer's

Puget Sound Public Radio
KUOW 94.9
Seattle, Washington
May 24, 2005
Many THANKS! to my transcriber.
Please do not repost.

Kate was a call-in guest on this program. 

Marcie Sillman: The actress Kate Mulgrew.  She's currently appearing in Seattle Repertory Theatre's production of her one-woman show "Tea at Five."  Kate Mulgrew is also the national spokesperson for the Alzheimer's Association. Thank you for getting up to join us today.

Kate Mulgrew:  (laughing) How do you know I'm getting up?

Marcie Sillman:  Maybe you've been up since last night – I don't know!  You have a personal family experience coping with Alzheimer's, is that right?

Kate Mulgrew:  I do.  My mother.

Marcie Sillman:  And I'm wondering if you can talk about what it's like to… to watch a family member deal with the progression of this disease.

Kate Mulgrew:   I can, and I will try to be as coherent as possible.  I'd like to pick up on what I overheard you saying when I was waiting for you, which is that the great difference between senile dementia and Alzheimer's is that there is nothing soft about the on-coming of Alzheimer's. It happens with a brutality and a swiftness, and one could almost say, a terrible cruelty that dementia doesn't have because dementia is very slow in its progress.  That's how, when my mother was diagnosed, from that moment forward, one could see very … very clearly, the loss and demise of this extraordinary and vibrant creature who had so defined me, and had made my life so full of richness.  And unfortunately for the victim of Alzheimer's, there is a long period of cognizance, you know, it goes in three stages, and she's now in the very last stage.  But in that first stage, and even well into the second, which is the moderate phase, they are aware that they have the better part of their mind, and at least in my mother's case, there is an agony of indecision and a great life that her life could end so she wouldn't have to endure this ghastly, nightmarish phase.  So my wanting to talk about this is only to assure everybody that a cure can be found for this, and it is being worked on right now.  Unfortunately all of the work they did in the last three years, I wouldn't say is … is defunct, but we … we have to keep going because the new studies with the mice have proven that the plaque theory, although not defunct, is no longer probably as robust as it once was. And that there is a vaccine and that we must work very hard as a community, because the sorrow is almost unspeakable. 

Marcie Sillman:  From your experience, what's the thing that most caregivers need?

Kate Mulgrew:  Caregivers themselves. 

Marcie Sillman:  Caregivers for the caregiver.

Kate Mulgrew:  Well I'm very lucky because, I mean… this is where I get emotional… the caregiver is the absolute clue to the final comfort of the victim.  But I find that most caregivers are the oldest daughters, or those who are intimately related to the victim, and their fatigue knows no bounds.  And they are often not relieved by anyone, and they sort of take over in a kind of extraordinary way that allows them no measure of comfort themselves.  So I would say to the families - gather around the chosen caregiver and make sure that that person, whoever he or she may be is given her time, and is told that she is loved, and… and… and that the gratitude is made very clear for this supreme gift of giving.

Marcie Sillman:  Now Sue McCurry, you work a lot with caregivers and families.  Does Kate's experience ring true for you?

Sue McCurry:  Oh absolutely.  I would agree that the biggest problem most caregivers face is that they're trying to do it alone.  And there's lots of reasons for that.  Sometimes there isn't anybody else to help.  Sometimes people – other family or friends want to help but they don't know what to do, and the caregiver doesn't want to ask because he or she doesn't want to bother them or burden… the children have their own lives… and everybody's trying to do the right thing, but the bottom line is the person who's providing the primary care can go for days and weeks and months, and be on twenty-four hours a day, seven days a week with no breaks. And that can lead to the caregiver becoming physically ill, and herself or himself depressed or anxious and not able to provide the best kind of care. So what I would encourage caregivers to do is to get help, not just thinking of it as a selfish thing for yourself, but thinking of it - you need help to take the best care of yourself so you can keep giving the kind of loving care you want to give to your family member.

Kate Mulgrew:  It's a double-edged sword, isn't it?

Sue McCurry:  Yeah.  Kate Mulgrew, you're a spokeswoman for the Alzheimer's Association.  What kinds of resources does the Association have for families coping with Alzheimer's?

Kate Mulgrew:  Well you have to go to your local chapter, and I understand that the Seattle chapter is very strong.  So strong, in fact, that I tried to have a benefit here during the run of my play and they had too many events.   

Sue McCurry:  That's a good thing.

Kate Mulgrew:  That's a very, very good thing… and… and pleased me no end. But getting back to the caregiver issue.  I would say another sort of diabolical thing at the center of it is the attachment that the Alzheimer's victim has to the caregiver, and vice versa.  So much so that the caregiver is reluctant to give her duties over to anybody else. Because the patient, or the victim – I don't know what you call it – can become belligerent, can become very uncomfortable, can become quite agitated without that … the presence of the constant caregiver.  And a sort of psychological pattern sets in, whereby the caregiver feels that no one else can do it.  It's deeply intimate. I don't know if any of you are … I'm quite sure you are – those of you who are on the panel and those of you who are listening – have done it yourselves, but I mean, not everybody can change diapers and false teeth and wash those tears and watch the incontinence, and particularly when it's someone you love as deeply as you love a parent.  So it's a … I think it's a very mysterious thing.  And the woman who was speaking just before us got a very good that often the caregiver does not know when to stop.  And how to ask for help. So I would say that the family has to really gather around, or the community around that person, and support them. 

Marcie Sillman:  Kate Mulgrew, thank you so much for taking time to be with us today. 

Kate Mulgrew:  It's my pleasure and I want to thank Seattle at large for all the good things they're doing on behalf of Alzheimer's.

Marcie Sillman:  Kate Mulgrew is an actress currently appearing in the Seattle Repertory Theatre production of a one-woman show, "Tea at Five".  She's the national spokeswoman for the Alzheimer's Association.

Listen to the full program on-line at KUOW's website