Maria (left) and Lucia (right) Paunescu
Her daughter is committed to caring for her at home and having her spend her last days there -- and not in a hospital or nursing home. Maria Paunescu has heart and vascular disease, is legally blind and has gallstone and constipation complications. When she was in her late 80s, her arthritis began getting worse, and then, when she was 94, she had an operation on one leg for shingles. Although she recovered, not long after she was hospitalized again for a shingles infection in the other leg. She subsequently got a new infection from her hospitalization and since then hasn't been able to walk.
Maria lives with her daughter, Lucia, who was forced to cut back on work three years ago so she could care for her mother. Lucia now works occasionally, 10 or less hours a week, and provides around-the-clock care for her mother.
Her Doctor's Comments
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Lucia describes what is involved in caring for her mother and the ties of love that make it bearable -- and not a "sacrifice."Watch »
Jeffrey Farber, a geriatrician at Mt. Sinai Hospital, has treated Maria Paunescu for the past six months; she is one of his patients in the hospital's Visiting Doctors Program for homebound adults. Here, Dr. Farber talks about the goals of care for Maria and how her daughter, Lucia, is confronting her mother's end-of-life issues.
“She's just so invested in her mom, and so devoted … it's very hard for her to accept the fact that she is so old and frail and not going to be around forever.”
Jeffrey Faber, MD
I met Mrs. Paunescu about six months ago, when she came into the hospital with a pretty bad infection of her feet and legs. It was a really bad infection, and I wasn't so sure it was going to clear up really well. She came with her daughter, who lives with her and is her caregiver, and [who] was always there, which is helpful because [Maria, Mrs. Paunescu] is very advanced in years. She's really bed-bound. She requires her daughter's assistance to sit her up in bed, to get her out into a chair, which she can sit in for a couple hours, but she doesn't walk. She can speak still, and talk but in a soft voice and only in Romanian, so I need [Lucia, her daughter] as a translator.
… And when she was getting ready to go, we talked about what kind of care she's going to get, and she really didn't have anybody and didn't have access and couldn't get places. So I recommended that we enroll her in our Visiting Doctors program, and that I take care of her at home and put her on my panel of people that I see for the program.
Through the visits I've made, which are about once a month, I've gotten to know her and her daughter much better and [have] come to appreciate her [Lucia's] caring. The cultural differences are pronounced, and she often will disagree with my clinical judgment or say, "Ah, no. That medicine's no good. I know it," and want to use something else that I don't use. And I think it's a little strange, but we work together and we make deals, and she compromises and I compromise, and so together we come to a plan that's palatable for both of us.
And since then, you know, some things have gotten better, but more recently her mother's getting sicker overall. We've been spending a lot of time talking about what to do when her time comes, and how it's very clear she doesn't want her to go to the hospital. She doesn't want someone to call 9-1-1. So she filled out one of these Do Not Resuscitate orders at home to put on the fridge, and [she has] access to us and to me all the time to talk about things. She has a good visiting nurse at home who helps out a lot, and we talk almost every other day it seems about what's happening.
- Costs of Care
- Medicare/Medicaid covers the costs for Mrs. Paunescu's supplies and part-time home care aides, but her daughter, Lucia, bears almost all of the burden of around-the-clock care.
What are her mom's issues, physically?
Well, her mom still has wounds on her feet. She had shingles, and her shingles was in her leg and her foot. It caused a really bad rash, and the rash developed into a wound. The wound was infected, and it takes a long time for that to recover. She also has poor blood flow down to the legs, due to heart disease and vascular disease. And so it'll take longer than normal for those to heal.
She has heart disease and angina, and she's on medicines for that. … She had a lot of eye troubles, really legal blindness with lots of infections in the eyes repeatedly. Lots of issues with constipation, and gall bladder disease. She's got a gall bladder with stones, and you'd take it out of someone without a thought because it's going to cause trouble in the future, but we can't do that with her. It's not really in line with what she wants or what [Lucia] would want for her mom. So we kind of deal with the pain and try and treat the pain with pain medicines and diet modifications, which helps.
She's [also] a classic example of frailty. I'm sure she weighs less than 100 pounds. She needs to be fed. She can't take the spoon and put it in her own mouth. …
Is her daughter prepared for her death? And how do you know if she is?
You know, as far as Lucia being ready, it's tough. Because of the cultural barrier, we've had a lot of these conversations, and at some point she seems to be on the same wavelength as me, but then at other points not really. And I think she's just so invested in her mom, and so caring and so devoted, and she's seen her mom pull through other episodes where she was really sick, and made it, and made it home, and because she doesn't have the dementia and she can still talk to her and enjoy her presence and communicate, it's very hard for her to kind of picture and accept the fact that she is so old and frail and not going to be around forever.
So I think she understands it, and my job is to make sure she can understand and prepare, but not to overburden her with worries and bad thoughts. Just so that she can enjoy what time is left and be prepared for the signs and signals that things are going to be ending more rapidly, which we've talked about.
Will her daughter send her to a nursing home? If not, why not?
She will never send her to a nursing home. And I don't think that she will send her to the hospital ever again, either. I think that she's committed to caring for her at home and having her spend her last days and die at home. She feels strongly that it's unimaginable for her to consider shirking her responsibility as a daughter by sending her elsewhere for care. It's just out of the question. And she will do everything in her power to care for her at home. And she's a very good advocate for her mother. She's helped together to get a lot of good services for her at home.
Mrs. Paunescu is 96, so is her condition unsurprising?
That's a tough question. Yes and no, the question of aging and what to expect, and if you're 96, is it normal to be bed-bound and need all this help? Yeah, you're more likely to be in that scenario if you make it to that age, but I have patients who are the same age who take the crosstown bus to come to see me in the office -- by themselves. And so again it's not a normal part of aging, but it's not rare. Everyone's got their own thing.
What are the goals of her care?
Mrs. Paunescu has been sick for a while, and she's been frail and debilitated and not walking for many months -- and even year. She won't walk again. She won't improve at this point. This is where she's at, and it will progress from here. Our goals are to keep her comfortable. These are goals that we've mutually agreed upon in conversations with her and her daughter: treat her pain as aggressively and effectively as we can; maximize her quality of life by getting the Hoyer lift so she can get out of bed, sit in a chair for a while, so she can eat a meal at the same time with her daughter and enjoy her company; she likes to [be read to], to listen to music; and try and heal the wounds as best we can so that she won't have pain from them, with special treatments and nursing care and special bed and all sorts of stuff like that.
How would her care be different in a nursing home? How would she do?
I think Mrs. Paunescu would not do well in a nursing home. I would think that she wouldn't last very long in a nursing home. They can get the same bed, they can give the same wound treatments, and they could provide the same nutrition, but she will not do anywhere nearly as well as she will at home because of the lack of that care-giving, that person who's there with you all the time who cares, and the language barrier.