WEBVTT

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[sil.]

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Yeah, put out your chair,
you have to walk around it.

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Now put it over there by your chair.

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Okay? Well, we move this over there. Mine
over here. This one goes over there \'cause

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that\'s what you gonna say.

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You gonna slide it over there.

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This one, right there. Okay,
you wanna put soda in that?

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(inaudible) beside the plate over there, and mom
is (inaudible) over here. You get one (inaudible).

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This disease imposes a
lot of stress upon you.

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I\'m wondering how that\'s
affecting each of you.

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I think it\'s… it\'s better now,

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umm…

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than it used to be because
Everett shows much,

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you know, concern.

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And it\'s a good support for me.
Certainly, our love for each other

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as Betty (inaudible) and I think
is stronger now than ever been.

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Simply because from my vantage point,
I realized how much I need her,

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how much I dependent on in the
past, how much I love her now

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and I want to do everything I can
to make life meaningful for her.

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And so for us every day is a very special day and
our love for each other is better than ever before

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and that\'s a physical love as well.
I\'m respecting all of (inaudible)…

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Right.

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Some couples facing Alzheimer\'s disease

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have told me about a… a
diminished sexual desire

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because of some of the daily
frustrations they face,

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they just don\'t feel like they\'re
interested in that anymore

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and there\'s a different focus
in their relationship.

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I\'m wondering what that experience has been for you either
diminished desire, some people report to me an increased desire.

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Yeah, that\'s what I feel about.

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I think I don\'t know. Maybe
it\'s… it\'s… Maybe I\'m greedy.

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[sil.]

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Keep on being greedy, kid.

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What do you mean by that?

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Can you talk about that somebody?

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[sil.]

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You feel a greater closeness and a…
and a desire for Everett than before?

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Yes. Well, I\'ve always
liked him pretty much.

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Okay, how are you folding it? You wanna do the
t-shirts, anyway you wanna do them is fine.

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Or do you want me to tell
you which way to do it?

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I will… will be telling you.
I hope I see this in the…

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You have… better have to
fold your stuff. What?

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You better have to fold your stuff. This is mine,
is it? I hope so. I am in trouble for this…

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[sil.]

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You gotta (inaudible).

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Doesn\'t quite fit me.

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I\'m just gonna say (inaudible)
this morning ugly.

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Did you plan that?

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I just wanted to see how you would
react to that. Aw. Clever joke.

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You\'re outstanding. I\'m so
excited, I can\'t do it.

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Our relationship is so complete…
and so committed to each other.

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And because… again because of our faith

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we feel God has put us together that we can give
ourselves to each other completely, just no reservation.

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Take more time for each other.

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And we agree

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umm… being intimate with one another.

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And it\'s…

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it\'s a trillion joy.

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Thanks. They are nice.

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You wanna sniff it?

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You could sniff it. Not me.
I think the relationship

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is… has a lot more depth to it now. Also, you
realize that it isn\'t going to go on forever

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as Betty alluded to,
that today\'s a great day

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and so we\'re gonna keep it great and we\'re going
to make it as great as we can make it today.

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And if we should have tomorrow or
100 tomorrows or 1,000 tomorrows

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and we\'re gonna make those
just as meaningful to them.

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She\'s now in her sixth year

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of Alzheimer\'s. When it all began
I just felt like she was my wife,

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I was her husband and she had some problems
and… and we could live with those problems.

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But in the last 8 to 10 months things
have really started to change a lot.

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And now I really see myself as a caregiver.
And I\'m recognizing the differences

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in the attitude and relationship
that evolves around that.

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She\'s still my wife and I love
her and she still loves me.

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But, because of the caregiver role,

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things began to change in terms of the
relationship. And I may get a little emotional

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when I talk about this. (inaudible)

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know I\'ll get emotional talking
about this. It\'s almost

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like you\'re caring for an adult child.
She doesn\'t have to wear diapers

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or anything like that yet.
But she does have a problem

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with not wiping herself and so she\'s
developed some odor or wetness.

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A few times she\'s not realized she had to
go to the bathroom until it was too late

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and so she\'d wet herself. So it\'s
like you\'re caring for an adult baby

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or an adult little child. And when
you do that day in and day out

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it\'s… it\'s this husband-wife
relationship begins to change.

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And when it comes to our sexuality,
she\'s not as responsive as before,

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when we talk about it she
still wants to have sex,

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she still wants to have a intimate relationship.
But it\'s like she doesn\'t know what to do.

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And there are times when it\'s almost like I get
the feeling that there\'s this shy little girl,

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who\'s embarrassed by the fact that
she doesn\'t have any clothes on

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or that I don\'t have any clothes on. And
she\'s embarrassed by the whole thing.

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And sometimes there\'s this shy
little laugh that really gets to be

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a bother to me after awhile because
I\'m wondering if she\'s laughing

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at my body or… or… I just don\'t know
why she\'s laughing. And sometimes

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she can\'t even tell you why, except that she says, \"Well,
I\'m shy.\" And I say, \"Honey, we have five grown children.

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We\'ve been married over 30 years
now, we ought to be getting over

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the shyness part, you know.\" But it
does change things after a while.

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Betty was once rather
persistent in her sexual drive

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and I think you\'ve described some of the…

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some of your reactions to her persistence.
Can you talk about that a little bit more?

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I think there were probably two or three reasons
why she was wanting to be more intimate.

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First of all in our work, as we\'ve
indicated before we roll as a team,

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we worked together, we had a
contribution to make. Suddenly

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in the Alzheimer\'s role, she realizes she\'s
not giving towards the work anymore,

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in fact she\'s slowing me down a bit.

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And so she\'s felt really
insecure about that.

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And I think rather than feeling that she\'s a
burden, she\'s just tried to give herself to me,

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to try to make up for that. I think too…

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there was a point where she was
jealous of me. And I think she… she,

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in fact asked me once, \"Is there
some other woman in your life?\"

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And I assured her that that was not the case.
\"Well, why don\'t you make love with me every day?\"

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You know. I\'m tired for one reason.

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And the schedule sometimes when I
come home you\'re asleep already,

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you know, I don\'t want to wake you up,
but… and then the stress of this on going

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caregiving situation just takes away the
desire sometimes. So I really felt like it

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was more of a security blanket for her
if you will to know that I wanted her.

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Also to know that she could give herself
to me, her greatest gift was herself.

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And that was a wonderful gift to us.
But, physically,

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I just couldn\'t perform all the
time every day kind of thing

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and so I was kind of frustrated
over that whole deal.

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And trying to meet her every need,
whenever she wanted her need met.

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And it became very difficult
for me there for a while.

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And then I just have simply tried to reassure
her through hugs and kisses, that I love her.

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And there is nobody else.

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In the past when Betty
would… would initiate sex,

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you told me that you were very responsive and you still
were able to enjoy that part of the relationship.

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In light of the changes
that have occurred lately,

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just wondering about your own reaction

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when either she initiate sex or when you
feel the desire, what goes on with you?

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First of all, sometimes
when she gets amorous,

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we\'re in church. And that\'s not the place,

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nor the time. So we have to try to convince
her that we\'ll try this a little bit later.

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But, she still is very loving, very
affectionate. She\'ll wanna hug me

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or kiss me sometimes in public and
I have a little self-conscious

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about that in public places. And so we kind
of go with the flow in that situation,

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but then when we\'re at home though, she\'ll
kinda let me know that she wants to be loving

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or something to that effect.
Well, then, I\'ve discovered now

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that we don\'t necessarily have to wait
till it\'s late at night to go to bed,

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especially when just the two of us are
there. And so we\'ve been able to,

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\"Say what? You want to take a nap?\" \"Well,
yeah, fine.\" You know, so, we go downstairs

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and… and, get ourselves ready for a
little nap time and a little love time.

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And that\'s been a real nice thing. But
that really is becoming less and less,

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simply because while she indicates,
she\'s interested in doing this.

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Her responses are such that
it just isn\'t happening.

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It gets very frustrating for me
to… to be ready, to do something

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and then I\'m… I\'m trying to explain to her,
what we\'re doing? And trying to get her respond

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and it just isn\'t a natural kind of response. Sometimes
I feel a little embarrassed about the fact that,

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I can\'t maintain an erection or something.
So, then I wonder

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if there\'s something wrong with me, either
psychologically or physically or emotionally

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or, or whatever and so it becomes a frustrating
experience. I think one of the things too

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is that, when we\'re trying to have intimacy

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and she\'s not responding,
naturally or spontaneously,

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I almost get the feeling sometimes
like that I\'m taking advantage of her.

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And I wouldn\'t do that for anything. But I think
I\'m just getting to that point in my life now,

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where I recognize our love can
be deep, it can be wonderful,

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it can be intimate, without intercourse.
I still love to hold her hand.

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There\'s something magic, about her hand.

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And we both feel that way.

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It was necessary to put
Betty in a nursing home.

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It was a devastating day, in my life
as well as the life of our children,

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when that happened. We checked out several
nursing homes prior to deciding on one.

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And we took her to a nursing
home in Bloomingdale(ph).

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She had a Grand mal seizure in the summer.
And within a matter of three

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or four months, I had a total
personality change, her

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physical demeanor everything changed
about her. And she was totally lost,

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then she could no worry, she couldn\'t use the telephone. She
didn\'t know address, she didn\'t know how to get to the phone?

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She didn\'t know where the door was? And
her health than begin to deteriorate,

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she lost 35 pounds in three months.

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You had once talked about the fact that you are
around, really living on borrowed time with Betty

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and you were making the most of
every day with her. And then,

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as she began to change as the disease
took its toll, you are really affected

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at as I recall, feeling a sense of distance
from her, uh… she was still somewhat amorous

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towards you, but you… you
no longer appreciated that,

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because of her physical care needs.

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Yeah, I think a problem that developed between us was the
fact that, knowing that she wasn\'t in her \"right mind\",

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I felt that like, I was
taking advantage of her,

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if I wanted to show my affection. Uh… There were
times when I felt like, she knew who I was?

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Then or there were times when I was
a man, that I wasn\'t her husband.

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And she didn\'t want a man around her.
She wanted to be left alone.

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So, that was a very difficult time for us.
And even though I know she loves me,

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she just wasn\'t the Betty that
I had known for so many years.

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So, that really did become a difficult
thing for us. Occasionally,

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even in the nursing home I would feel like, she knew who
I was and she wanted to hug me and I would hug her back,

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but certainly there\'s no appropriate place
to show your affection in a nursing home.

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And she was at a point, where
I couldn\'t take her home,

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and the… so that, the love-making part of
our life was just that thing of the past.

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In other words, there is no privacy
at all in the nursing home,

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it\'s a… it\'s a pretty much of a public place? It\'s a
public place and even when she had her single room,

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there are no locks on the doors and so, there are
residents of the nursing home who are happy wanderers.

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And they would come in
at anytime and often.

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And so, it was just a regular family
circus, even visiting at the nursing home.

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And but there were those times, I
remember once or twice when I was just,

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and it\'s a single bed sheets and a regular
hospital bed. But I would just lay down beside her

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and snuggle up next to her and just hold
her. And that was gratifying for me,

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just to be able to hold her, and to let
her know that I was there for her.

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Now, even at the present time and
her really debilitated state,

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other opportunities to either give
affection or receive affection from her?

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I… I even, as she is
sitting in her Geri Chair,

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I still put my arm around her and
all the fluff the pills for.

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If I cry a little bit, I still love her.

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And so much I wish I could just hold
her, and feel her arms around me,

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but there\'s no response
anymore, she\'s just there.

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And so we just deal with that, but I
hold her hand all the time I\'m there,

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I\'m holding her hand. And I kissed her on the forehead
or once a while I get to kiss her on the lips.

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And just tell her that I love
her, and that\'s who I am?

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And just constantly remind her that I may have and
I\'m the old guy that she married a lot of years ago,

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who still loves her very much. But,
I would sit in the car at night,

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probably for the first six weeks and cry for 15
minutes, so hard that I couldn\'t see to drive.

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So, I would just sit in the parking lot.

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And how do you think you began to come out
of this deep grief that you just described?

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Well, I think again the faith has
been an important part of our life.

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And I just felt that the, God
was in control even of this.

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And so are…

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our faith and our prayer was that God
would be honored through all of this.

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And that maybe we could, be an
encouragement to somebody else. And so,

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I just accept that this was my
lot… her lot in life. After wish,

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I could trade places with her. And,
decided that we would just make

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the most of the opportunities that we had.
So, I\'ve just tried to…

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be positive about the whole thing.
Again my going to see her every day,

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I take her laundry home a couple times
a week and do that take it back.

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So that, while at the home would provide
that service. I just felt that this list.

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It\'s one thing I could do that would be
touching her. And giving her that little,

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and bit of affection that, whether she knew it or not,
I knew that this was something I could do, for her.

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I\'ve talked to some men and women,

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who had placed their loved
ones, you know, care facility,

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and then began new relationships
with members of the opposite sex.

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Could you tell me your thoughts or opinions about something
like that? Well, there was a time in my younger years,

00:19:10.000 --> 00:19:14.999
when I would consider that to be a very
immoral kind of thing, if nothing else.

00:19:15.000 --> 00:19:19.999
But certainly having been in
the situation I\'m in now,

00:19:20.000 --> 00:19:24.999
I can understand where people
developed a friendship,

00:19:25.000 --> 00:19:29.999
uh… some close friends from my faith perspective,
it still would be considered wrong for me

00:19:30.000 --> 00:19:34.999
to have a relationship with
somebody else while I\'m married.

00:19:35.000 --> 00:19:39.999
That\'s more than just a mutual friendship.
And so that becomes a difficult,

00:19:40.000 --> 00:19:44.999
kind of, thing to face. Uh… I
have lots of wonderful friends

00:19:45.000 --> 00:19:49.999
that I feel I\'m very close to,
but at this stage of my life

00:19:50.000 --> 00:19:54.999
I\'ve not allowed myself to
get beyond a certain point.

00:19:55.000 --> 00:19:59.999
I do have two or three friends that I just meet for
a meal once awhile, just to hear a lady\'s voice,

00:20:00.000 --> 00:20:04.999
is very meaningful to me or just to,

00:20:05.000 --> 00:20:09.999
instead of looking at the wall when I eat my
breakfast or listen to myself (inaudible) grown,

00:20:10.000 --> 00:20:14.999
to hear a pleasant voice and to see a smile
across the table is certainly a wonderful thing.

00:20:15.000 --> 00:20:19.999
And going to support groups, and
I certainly believe in the value

00:20:20.000 --> 00:20:24.999
of a support group. I\'ve heard,

00:20:25.000 --> 00:20:29.999
I\'ve guy friends who… who have
developed these special friendships

00:20:30.000 --> 00:20:34.999
and I certainly don\'t condemn them for that. I think
it\'s wonderful that they\'ve been able to find somebody.

00:20:35.000 --> 00:20:39.999
The… the people at work they
really have become my family.

00:20:40.000 --> 00:20:44.999
I like people and I like to be with them,
but it\'s not easy for me to be alone.

00:20:45.000 --> 00:20:49.999
And so I just, kind of, feel my wife
with other people and that association

00:20:50.000 --> 00:20:54.999
is my work people here at the
school has become family for me.

00:20:55.000 --> 00:20:59.999
And so… and as a Christian people we give
lots of hugs to each other out here,

00:21:00.000 --> 00:21:04.999
and just… just that\'s
good enough to get me by.

00:21:05.000 --> 00:21:09.999
And if the time comes when
the Betty should die,

00:21:10.000 --> 00:21:14.999
it\'s pretty hard for me to be a
single guy I think. Although,

00:21:15.000 --> 00:21:19.999
I\'ve been able to cope with it
up to this point, but I\'d like,

00:21:20.000 --> 00:21:24.999
to think there might be somebody out there for me. Betty and I had talked about
that even when she was still able to communicate that if I should die before her,

00:21:25.000 --> 00:21:29.999
I would certainly want her to
feel like she could remarry.

00:21:30.000 --> 00:21:34.999
And if she died before me, then she would want the same
for me. And we will have wonderful memories of the lives

00:21:35.000 --> 00:21:40.000
that we\'ve had together.

00:22:05.000 --> 00:22:13.000
[sil.]