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Tending to Alzheimer's: Community TV

  • Richard Cohen:

    Alzheimer’s is a disease that frightens all of us and for good reason.  More that 5 million Americans live with Alzheimer’s Disease today.  By 2050, that number could climb as high as 15 million.  That’s pretty scary.  Too often, the characters in the shadows of the Alzheimer’s drama are the caregivers; they tend to the well being of the sick, often those are loved ones.  In the end, caregivers may be the true victims of an illness, such as Alzheimer’s.  Ted Comet is just such a person.  Ted’s wife, Shoshanna, by the way of 56 years, an artist, psychotherapist and a holocaust survivor, was diagnosed with Alzheimer’s disease 11 years ago.  Ted, you’re very close to your wife.  Tell us about her.

  • Ted Comet:

    Well, she’s a woman of indomitable courage.  She’s gone through a lot, and she’s really in a sense learned one of the mysteries of life, which is how to deal with trauma.  And that is to convert the trauma to some creative act of energy, and she did that with her artwork and then in her practice as a psychotherapist.

  • Richard:

    Does she fully appreciate the condition she’s in?

  • Ted:

    No.  First of all, there’s a lot of denial on everybody’s part, not just my part as a spouse, but on her part.  The disease is a slowly progressing one, as you can imagine something that’s taken 11 years.  In her current state, she’s not aware.  There’s no cognition left to be able to recognize her condition.  I mean here’s a woman who once spoke eight languages and now has no language.

  • Richard:

    So, the trauma really belongs to you?

  • Ted:

    At this particular point, yes.  Yes it does.

  • Richard:

    And you are part of a support group that gives you a great deal.  Tell us about it.

  • Ted:

    Yes, I joined about 10 years ago, a support group sponsored by the Alzheimer’s Association.

  • Richard:

    Which is a very active group, right?

  • Ted:

    Yes, which is probably the central national organization addressing the issue of Alzheimer’s, and they’re really to be lauded not only for the work that they do directly in trying to find some cures or amelioration for Alzheimer’s, but also for addressing the problem of helping the caregivers families.

  • Richard:

    Right, and the New York chapter’s particularly good.  So, they put together the support group?

  • Ted:

    They put together the support group, ably led, and the value of the support group is multiple.  Number one, it’s the only place where the focus is on the caregiver rather than on the ill partner.  Secondly, I find that no matter how empathetic people are, they really can’t truly grasp the profundity of the horror of losing your loved one bit by bit, day by day.

  • Richard:

    Do you find that people around you, people in your life, try to understand?  Try to relate? 

  • Ted:

    Well, on the one hand they do, but I find them very uncomfortable connecting to someone with Alzheimer’s.  And you begin to lose many friends; you begin to lose friends that you were connected to as couples.  Then when your wife can’t participate, you lose that factor of being a couple part of a dynamic.  Secondly, there are a lot of friends who are just uncomfortable; they don’t know how to handle a.

  • Richard:

    Do you think they’re threatened by it?

  • Ted:

    Well, I’m sure the discomfort has a bit of looking, plus potentially seeing themselves in that situation, and it’s a very insightful point.  Yes.  So they’re threatened, they’re uncomfortable, and in sense they pull back and they disappear.  One of the other horrors of Alzheimer’s, not only do you lose your soulmate and your life partner, but you also begin to lose much of your social circle and in a sense there’s a sense of isolation. 

  • Richard:

    Do you feel like you’ve lost a piece of yourself?

  • Ted:

    I would say not just a piece, but a very, very big piece of myself.

  • Richard:

    And that’s something you can’t get beyond, is it?

  • Ted:

    Well, let me sort of define it to get beyond it.  I mean there’s no way of overcoming the depth of that loss, and one of the reasons is that what you have here is the death of your marriage in the sense that the woman that you married who was your life partner, who was your soulmate, who you did everything with, who you shared everything with, is no longer there and has been transformed into a helpless child.

  • Richard:

    Well, I know this in talking to you, that though you still live with Shoshanna, you speak of her often in the past tense.  Are you, whether you realize it or not, sort of separating from her?

  • Ted:

    Yes. Yes, I mean it’s a very painful business.  You want a little bit of separation; otherwise the pain and the agony are too overwhelming.  Part of the issues that come up, there’s a brilliant Irish bit of black humor, it goes like this; if you think you’re beginning to see the light at the end of the tunnel, it means you’re facing in the wrong direction.  So what it applies here is anytime something seems to be better, but you know eventually it’s only going to get worse.  So whatever you’re dealing in the trials and the tribulations of the moment, there’s no hope that somehow in the future it will be ameliorated.  So things are only going to get worse.

  • Richard:

    Well, I think we know with this awful illness that things are going to only get worse for her.  The question is, can things get better for you?  Do you ever get used to it?  Do you find that you can integrate it into your life?  Does it change?

  • Ted:  

    Well obviously it has changed my life in terms of how to deal with the variety of different modalities for how to handle this.  One is, because the marriage was such a happy and productive one, in my emotional bank there’s a lot of tremendous memories in my emotional bank account and you draw on those.  Then secondly, you find different ways of coping; I mean like in the support group.  This is the one place that you can share with others who know what you’re talking about because they’re in the situation.

  • Richard:

    Give us an example of how that group teaches you to cope.

  • Ted:

    Well, let me give you three ways.  One way, and a very practical way, for many years I was my wife’s exclusive caretaker and the group kept pushing me, telling me that you’ve got to take care of yourself as well, because if you don’t, you’re going to go under.  And if you go under, not only will it be bad for you, but you’ll also remove yourself as a possible help to your wife, so this practical side.  Well, it took them really two years, but because of that, I did manage to get into taking on a caregiver and that was really a lifesaver for me, and fortunately, I now have a caregiver who’s absolutely extraordinary and has become like a member of the family.  So that has eased the burden tremendously.

  • Richard:

    And is this somebody who comes to the house every day?

  • Ted:

    Yes.  No, this is a live-in arrangement.

  • Richard:

    Really?

  • Ted:  

    Yeah, my wife can’t do anything; she can’t stand, she can’t walk, she can’t eat by herself.  There’s nothing she can any longer do for herself by herself, so she has to be cared for in every way.  But I want her home.  I don’t want to have her in an institution. 

  • Richard:

    Sure.  Does your wife recognize you?

  • Ted:  

    Well, let me put it to you.  There are good days and bad days.  The bad days I would say the light is out.  On the good days, I come to her and embrace her, I kiss her, and on the good days she will kiss me back.  And she used to have kind of a smile that when she would walk into a room, she would light up the whole room; and then I see a vestige of that smile and my heart just melts.  And I find that very moving, it brings tears to my eyes and it’s a kind of a recall of what once was.  So, then they also, you get practical advice from the Alzheimer’s.  Just give you a small example.  My wife lost the capacity, let’s say to swallow a pill, so I brought this issue up and they said, well you buy a pill cruncher and then you crunch it and you put it into food or liquid.  Well, after you hear this it sounds obvious, but if you haven’t been there it’s an innovation.  So, that’s kind of a practical advice. 

    So there are practical things and then there are the emotional psychological things, and it becomes like a family.  You develop very close rapport with the other people in the group, and then also some people in the group I go out with.  So you have company to go to the opera, to the theater, to plays and to be able to do things with, so you’re not locked in.  And it’s important not to have your life defined exclusively by the condition of your wife because you have to have capacities for renewal. 

    And then the third piece I want to say is what’s important is to do what I referred earlier, to what my wife did with her trauma, and that is to find some way of using that trauma and to create something with it.  For example, I published a booklet of my wife’s tapestries and I wrote comments on each tapestry, how it advanced the process of self unshacklement from her trauma.  Well, writing the book, it’s interesting on an overt level.  I wrote it because I wanted the grandchildren to have some notion of their grandmother in their prime and not as they’re experiencing her now.  But I see that underneath it all, I was trying to retrieve the past and that condition when she was my full partner.

  • Richard:

    Sure.  Does she have a relationship with your grown children?

  • Ted:  

    With her grandchildren?

  • Richard:

    Her grown children.

  • Ted:  

    Well, both of my kids are out of town.  My daughter comes in every couple of weeks.  My son lives overseas in Jerusalem; he comes in about four times a year.  And without cognition, the degree of relatedness is very limited.  So, they try to connect, but the connection becomes fainter and fainter. 

  • Richard:

    So the real challenge for you it seems to me is protecting yourself and preserving your own sanity.

  • Ted:  

    I would say that’s the critical thing.  And as I see new people coming into the group, the group keeps changing because [inaudible] the ones who have been there longest, usually they don’t last; they die at a much earlier stage.  But I see the new ones coming in and they’re really at sea and deserving sanity is a major thing that we try to help each other with. 

  • Richard:

    Do you draw satisfaction from helping others in your position?

  • Ted:  

    That’s a very insightful point.  I would say absolutely.  I find that by helping others, and I’m able to help the newcomers because I’ve been there before and been through every stage that they’re going through and will go through, so we're -- I'm able to be helpful to others and they are helpful to me.  But the idea of helping heal someone else is very much a self healing experience, so there’s no question about by -- in a way, now that you raise the point, I mean conceptually I’m thinking of that process of using your pain for some constructive purpose is actually actualized when we help somebody else.  So in a sense, when you help somebody else, you feel that your pain is not for naught, that someone else is benefiting from your condition.  So, perhaps it’s a longwinded answer to your question.

  • Richard:

    No, I think it’s very interesting.  I also think that though you’re very involved with other people, your helping other people, still you speak of isolation.  Do you get lonely?

  • Ted:  

    Well, apart from the generic condition of all mankind of  existential loneliness, but yes. 

  • Richard:

    Well, bring it down a level. 

  • Ted:

    Yeah, bring it back from that level.  I would say that, there’s a distinction between aloneness and loneliness.  It’s not aloneness because I do have my family and children and grandchildren.  But ultimately, there’s the sense of loneliness.  You lack the person with whom you really shared your deepest thoughts, your deepest concerns, your deepest emotions, your loves, your fears, your excitements, your passions, everything that makes us human, everything that can enrich the life that we live.  And the partner who was with you, and reinforced you, and enriched you, is gone.  It’s gone.  And what I didn’t mention before is just the horror of seeing someone that you so admired and you so loved, just declining that way.  And the further horror is that here my wife was always so fastidious in terms of her dress and how she looked.  I mean if she was able to see herself, now she’d be horror stricken.  So, just that aspect, both of the loss, seeing the loss, experiencing the loss, it’s heartbreaking.

  • Richard:

    How do you keep from feeling bitter?  How do you keep from feeling anger about this situation?

  • Ted:  

    Well, I did go through a period of anger.  I remember once feeling so down; I was walking down the street and I looked heavenward and I said God, I says, take us both.  Just do us gently.  Take us both.  I really didn’t want to live.  But I do find, this is very interesting, this in resilience of people is stunning.  I know newcomers come to the group and they say, I’m barely able to handle the situation now and it’s only going to get worse.  How am I going to find the strength to do so?  And I was thinking about it, and I said to the group, make an analogy to a physical thing; you’re doing weightlifting, you can only start with a light weight until you buildup heavy weight.  You could never do in the beginning what you did at the end.  And I said the same thing happens with our psychic musculature.  During the process of experiencing all of this, we do strengthen our psychic musculature and we do grow and deepen and manage to find the inner strength to deal with this.

  • Richard:

    You know, I speak to chronic illness groups and I always tell them that we all sell ourselves short, that we’re all stronger than we think we are, than we give ourselves credit for being.  Do you think you’re a stronger person for what you’re going through?

  • Ted:

    Oh, I think so.  I think so.  I mean there have been times when I’ve felt so down and debilitated; I would have said no.  But not only do I feel stronger now, actually right now I feel that I have a lot of blessings in life.  I have loving children.  I have loving grandchildren.  I’m still involved in creative healing work, and I have developed relationships with the other spouses, with caregivers, so there’s still a cultural and social world.  And the truth of the matter is, I mean actually talking to you now was bringing tears to my eyes when I was describing her, I [inaudible] my wife.  But I do feel that, yes, there’s still a lot of blessings in life.  But I know we’re reaching near the end of this, but I do want to say that it’s so important that the medical world understands the importance not only of trying to find ways of dealing with the Alzheimer’s patients, but the importance of being supportive and find ways of healing for the spousal caretaker as well.

  • Richard

    Do you think they do then?

  • Ted:  

    I think if you ask most doctors intellectually, they think they are, but in practice, experientially, I don’t think they are.  I don’t think they are.

  • Richard

    Are you a religious person?

  • Ted:  

    Yes, I would say so.

  • Richard:

    Is that a source of strength for you?

  • Ted:  

    Yes. Yes. It’s a source of pain and a source of strength. 

  • Richard:

    How is it a source of pain?

  • Ted:  

    It’s a source of pain, because if you do have a religious outlook, you wonder why is the person who has already suffered through the holocaust like my wife and who’s been a giving, caring, healing person, going through all of this so long.  I mean where’s the justice?  Where’s the purpose?  Where’s the meaning of all of this?  So, it’s very hard to deal with this and still have a religious outlook about life itself in terms of its fairness, from a theological point of view.  But on the other hand, it is because there is a sense of there are values and there are meanings and there are significancies that still pertain, and that one still can connect to, and that you find that there are ways of relating to this world that extend beyond the hurt and the loss that you are and there are other ways of grappling and dealing and still experiencing the joys.  I mean just before you called, I looked outside; it snowed and the traceries of snow on the treetops were poetry.  So, want to be able to have an outlook that enables you to connect to the beauty that does exist in this world, that is surrounding us, and that we need to be open to and reaching out for those kinds of enhancing experiences that do make life worthwhile.

  • Richard:

    Sure.  I mean it must be a struggle to make sense of it.  You know, you must say why us?  Why me?  I don’t know how people in your position ever can make sense of this. 

  • Ted:  

    Well, I forget what philosopher said that one has to learn to live with ambiguity and this is one of those.  You’re juggling both sides of it.  But I’ll tell you, in the end, I also have a perspective.  I had 50 great years of married life, which is more than most people have.  So it’s not that I’ve been denied the good things in life, and while it’s painful to lose that and the yearning to have it continue on, but at the same time, I was fortunate to have a great marriage and for that I’m very appreciate and very thankful that I had over 50 wonderful years with an extraordinary woman. 

  • Richard:

    Ted, you wrote a wonderful moving essay about your situation, and earlier today you called that situation the death of a marriage, but you wrote that it is one that cannot be mourned.  Can there be closure, as long as the spouse is still alive?

  • Ted:

    No.  No.  No.  That’s the open wound part of it.  You know, when somebody you love dies, you go through a whole mourning process and you try to work it through and then move on to the next phase of your life.  But as long as your partner is still physically alive, you can’t mourn that kind of death.  I think you put your finger on what is probably the most critical issue here, that it’s a death of a partnership, of a relationship, of a marriage and you ultimately really can’t mourn it and you can’t really integrate it, internalize it and move on; it’s always there, always there.

  • Richard:

    Ted Comet, we wish you and your wife, Shoshanna, a peaceful journey.  Thank you for being with us.

  • Ted:  

    And thank you for your interest, I appreciate it very much.  Bye bye.

  • Richard

    Bye.

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