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photo of margaret enoch

margaret enoch

It doesn't matter so much what one's life journey has been like, as the end nears we all basically need the same thing. Mrs. Enoch lives in a large, art-filled apartment overlooking Manhattan's Central Park, but now she is confined to a bed in one small room. She has arterial disease that causes sores, infections and pain. A couple of years ago, her right leg had to be amputated and not long after that, her left leg developed sores down to the bone.

  • Costs of Care
  • A trust fund established by her husband covers the costs of home aides and a visiting nurse, making it possible for Mrs. Enoch to have around-the-clock care and spend her final years in her own apartment.

Nurse Gleason's Comments

Here, her visiting nurse, Lillian Gleason, talks about how at one time she didn't think Mrs. Enoch would survive the health complications associated with her legs and how, with expert at-home care, she was able to improve and live with much less pain.

How is Mrs. Enoch doing?

We're doing really well with Mrs. Enoch. She's an incredibly strong person. We thought we weren't going to be able to keep her around a couple years ago; she was doing really poorly. And I was feeling like there wasn't much of a future for her because she was in terrible pain, and she had sores on her legs. It was stressful to the max. I would come out of there with my shirt soaking wet and just feeling almost sick to my stomach, because the whole time I was there it was a struggle. She was on morphine but it still didn't keep her from having pain.

“It kind of doesn't matter what kind of life she led and where she was, because in the end we all need the same thing. It boils down to the basic needs of life in the end.”
Lillian Gleason, RN

Now, she has very little to no pain when we're changing the dressing on her leg. She's bright and cheerful when you come in. She speaks to you. She doesn't have much of her memory, so she doesn't really remember you from time to time, but she doesn't complain of pain, and she's basically doing very well physically. She may be here for a long time still.

I feel that over time and with a lot of people conferencing about her situation, we were able to get her turned around so that now she's doing actually really well.

What kind of intervention choices do you and your patients make? Would Mrs. Enoch have wanted a flu shot? How do you know when to do that with Mrs. Enoch?

It's a very tough question. If a person can't speak for themselves anymore, they hopefully have appointed someone to speak for them. And that is the case with Mrs. Enoch. So we look to that person for directions and instructions on how to proceed with the care of the patient.

If a patient can speak for themselves and really understands what a flu shot is all about, for instance -- they might say, "Oh, I don't want a flu shot," but they don't know what it means to not have a flu shot -- we have to try to instruct them on what the consequences of not taking that flu shot might be. And then if they are sound of mind and they really insist that they don't want it, then we can't force them to take it, even though we might feel that it's better for them. So it's a tough question.

We're in a much better position if someone spells out exactly how they want their care to be directed as they get older. If they don't do that, it's tough for us because we can't make decisions based on what we think is right.

And if they were able to say, they might say, "No, I didn't want that to happen." Because if we bring them back, they might not be anywhere near where they were before the event happen. They might be in a coma. If they had a stroke, they might not be able to talk. They might not be able to move. Various things might be lost to them, but yet they're still alive. And they might be really angry about that.

And there's no one solution to it. Everybody's different about that.

Mrs. Enoch. Your impressions when you walk in her apartment?

That apartment and the life that Mrs. Enoch lived is kind of unusual, in that she was part of a very wealthy group of people and her husband. So when you walk into the apartment -- the doorman and the elevator guy -- the elevator opens right into her apartment. And then when you look around, you see all the original artwork on the wall, and the view of Central Park. It's just so awesome.

And then you turn the corner, and in a little tiny room you see a little tiny lady, very frail. She has very tiny bones and hands and everything. She's so vulnerable looking, because she can't really see, and she sort of senses that there are people in the room but she's not sure who's who. And so it's really kind of incredible. She has this power about her. Her voice is very strong, she's very intelligent. All of the material goods she had before are all around her, but here she is in this little tiny room, in a hospital bed, with people taking care of her every minute of the day.

And she can't do anything for herself. She has to ask for a drink of water, which she does constantly. She can't remember that she had breakfast already, and so she thinks she's hungry all the time. But meanwhile she eats very well, she's taken care of very well by really dedicated people.

Age seems to be the final equalizer. From the projects to Park Avenue, no one is protected.

Absolutely. In fact, you could take her out of that apartment and put her in a bed in the projects, and she would look almost exactly the same as some of the older people that I take care of there.

So it kind of doesn't matter what kind of life she led and where she was, because in the end, we all sort of need the same thing. It boils down to the basic needs of life in the end. And however that gets delivered or taken care of is pretty much the same from place to place, no matter who you are.

The best to hope for is, it's done by somebody who knows and loves them?

Right. A caring person, whether it be a family member or somebody that's paid to do that job. At least if they care about you, you know that they're going to do it with tenderness and with some love.

I've seen both sides. People that just do the job because they have to, and they don't really care about who that person is. They'll have conversations over them, and don't even address them. They act like it's not even a person there. And then you have the flip side, where every single step of the way, they're considering what that person needs, in terms of comfort and care.

So yes, the best scenario would be a loved one, but it doesn't matter. Mrs. Enoch's people are paid to do that job, but it's like she's their grandmother or their mother, they take such good care of her. They love her. They do.

The future for Mrs. Enoch?

She's very fragile physically in some ways because she's not able to move or anything. But again, she's getting great care. And unless something unusual happens, if she just stays the way she is, she can go on for a long time.

And her caregivers are very dedicated to her. They're going to stay with her and make sure she's taken care of.

Without the kind of home care she's getting, what would have happened?

She would not have done well in a situation where she had strangers as caregivers. She really needs people 24 hours a day that know her and that know the little nuances of her care because she is demented, and sometimes she becomes agitated.

When we saw her, she was very sweet and cooperative. But there are times when she hits and pinches, and that doesn't go over well with somebody that doesn't know you. Unfortunately, some people don't want to take care of people that have those kind of behaviors. And they sort of get neglected. So she might have been left to her own devices, and then she would have failed. She definitely would have failed, because she's physically not able to do anything for herself.

She would have died in the care of strangers?

I can't say for sure, but that's my feeling; if she had been institutionalized, or she had been with people that were less caring than the people she has, I know she wouldn't have lived this long. Definitely not.

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posted nov. 21, 2006

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