Saturday, November 8, 2008

What You Don't Know About Health Care...

As I reported two weeks ago, my mother fell, fractured her hip and ended up with emergency surgery to repair it. From the hospital she was sent to a rehab facility because she will need intensive physical therapy to be able to regain her mobility.

Accidentally we had the name of a kosher rehab facility as my uncle was in it along with a friend of my mom's. It had a good name and the physical therapy was supposed to be excellent. So when the time came to transfer mom we took her to the rehab facility in Brooklyn. We were told we were actually "lucky" to get her in there since open beds are few and far between.

How to even begin to describe our experiences. First thing we have learned--my sister and I, the only siblings here in New York--is that even the best of facilities are not all that great. Unless the family can commit to long hours of visitation, seven days a week, and even longer hours of being on the phone trying to track down the various service providers in the home then the patient will not get everything that is promised up front. Even with family there all the time, even with a hired aide for over Shabbos, there are glitches that need straightening out multiple times per day.

Some of you may have parents who are getting on in age or grandparents who are doing so. Trust me, the time to plan out this kind of care is before you will ever need it. My sister and I are truly devoted to our mom. But we couldn't imagine just what was going to be needed. We both have families and there are jobs to be considered. And just because one person is in the hospital or in a rehab facility does not automatically confer excellent health on everyone else in the family for the duration of the patient's stay. During this two weeks we have "only" had one case of Coxsackie Virus, one case of bronchitis, one emergency endoscopy for an esophageal yeast infection and one emergency extraction of a severely impacted wisdom tooth. And that is in addition to the incision area getting infected on mom.

What I have noticed in the 10 days we have been in the rehab facility is that those patients who have family and friends who come regularly are the "lucky" ones. There are lots of people in the facility for whom the phone never rings and who get no visitors at all. I've made it my business to drop in and say hello to one woman down the hall from my mom who is one of those who has no visitors. I've brought her a tea when I bring one to my mom. But there is more that needs to be done.

The Brooklyn Bikur Cholim societies seem to function fine when it comes to hospital visitation but I think they need to expand their efforts when it comes to the multiple rehab homes that the borough has. And I think the various shuls also need to get involved in an organized manner.

My family is truly getting an education about health care and health care facilities. Some of what we are "learning" is fine, and some is not so fine. While we are so busy arguing about concerts and the color of women's skirts, perhaps time would be better spent evaluating what is available in our nursing facilities and how things could be improved upon. Until we ended up needing such a facility I admit I didn't give them all that much attention or thought; I know better now.


Anonymous said...

Sorry to hear about your mom and I hope she has a full refuah shelaimah. We had some of what you are going through with my zaydah last year. And like you did we learned some important things. One thing applies to everyone, no matter what their age is. All adults should have a signed health proxy that says who can make medical decisions for them in case they can't. And there should also be a living will. It's difficult to talk about but it has to be talked about when you are healthy because when you are sick or hurt may be too late.

A Living Nadneyda said...

Refuah Sheleimah to your mom. I hope her stay there is as short as need be. It's not an easy time, and you're right, the topic is very much "off the radar" until it hits home. Not one of us wants to spend much time contemplating old age, ours or anyone else's.

It's easy to understand my grandmother's concerns about going into an "assisted living facility," as the euphemism goes. We don't want her to have to go there, but we also don't want any of the potential tragedies we know could occur as long as she lives at home, alone.

Anonymous said...

We've got an aging population and not enough kosher facilities. When my uncle needed rehab a few years ago the only kosher facility that had an open bed for him was an almost 2 hour drive from anyone in the family. The kids ended up spending over $1200 a week on hiring private nurses aides to be with him, money he didn't have to spend and that put a pinch on the kids as well. He's at a point now where he shouldn't be living alone, he doesn't want to move in with his kids, who still have full houses of family, and he hasn't got the money to pay for the type of assisted living facility that would give him everything he needs. The kids are trying to work through the medicare system but it isn't fun.

You had a previous posting on how the needs of the elderly are going to be competing with the needs of tuition paying parents. I think they already are competing and the looming crisis is going to be elder care, not tuition.

Anonymous said...

There is worse then what you write about. Your mother should have a refuah shleimoh and will be out of the home soon. My grandfather is not so lucky. He has second stage Alzheimers. He has to be in a facility for the rest of his life. My mom is the only child--her brother long ago estranged himself from the family. We had a family meeting and everyone decided together that we were all going to have to chip in money to help out our parents with my grandfather's expenses. None of us have been to camp for the past two summers and the years in Israel were also cancelled. Instead of Touro 3 of us chose CUNY instead. Everyone over 18 has a part time job to pay for clothing and any extras we need. My brother's bar mitzvah this winter will be a nice kiddush in shul with just a meal for the immediate family in my mom's house. Please don't think that this has been easy for any of us, and don't think that this won't affect shidduchim later on, but we are a family and our parents brought us up to know that sometimes you have to give things up for something more important.

Anonymous said...

Refuah shleima. Fact is there are limited resources in hospitals, rehab centers, and nursing homes and the people who work there are stressed out, overworked and underpaid. The resources go to those who have family members there constantly. We experienced this with both of my father's parents. So many people there never have visitors and in turn receive lesser care. When the staff is given gifts of flowers of chocolates they reciprocate to your loved one and when they know there's someone there to check up on them and notice when things aren't right, they are more careful and attentive.


Your comment on how shidduchim chances will be diminished just goes to show how out of whack this system is. If anything your shidduch chances should go up - who wouldn't want to marry into such a family that exemplifies kibud av v'em and chesed?

Anonymous said...

When I was doing my MSW clinical rotation I was in one of the frum nursing homes. What JS said is true unfortunately. If family is not there all the time making nice to the staff then the seniors don't get everything they need in a timely fashion. Not because anyone wants to hurt these people but the homes I've seen are understaffed and very overworked for the staff they do have. It's that old truth about the squeeky wheel getting the grease. And yes I think the posting is correct that we have to give some real thought to where and how our older people are going to be living.

Commenter Abbi said...

There's a blog at that deals with these issues of elder care:

Refuah shleimah to your mom.

Anonymous said...

My wife has been acting as a "bedside companion" for over two years to a man in a hospital in Miami Beach. She started doing it as a chesed to help out the man's wife, who does not leave his bedside EVER. (Eventually, they started paying her for it.) The man's wife practically lives at the hospital otherwise.

The only reason that this man is still alive is because of the constant monitoring of his condition. The hospital staff, however competent, misses things all the time. Complaints and ailments go unattended, medications are not administered as required or the wrong meds are administered, monitoring instrumentation is not watched adequately and constantly goes out of calibration, IV drips and other constant (oxygen, feeding tube) therapies are not adjusted throughout the day, doctors are not summoned when required, patient is generally left to stare at the ceiling 24/7 or (possibly worse) stare at mindless TV shows 24/7. The list is endless.

The patients without the constant attention do not last very long.

Anonymous said...

Thanks for raising this very important issue. We spent 11 weeks of hell in a nursing facility with my father. Part of the problem was that we didn't know what to expect and assumed that certain types of care would be a given, and that we didn't have to check up on the staff for every little thing. We sure learned better. My dad had trouble in the beginning using his hands, something that the staff knew about because it was one of the reasons why he was there to begin with. So they would bring him the meal trays and leave the food there and dad couldn't eat it because his hands couldn't manage. It was three days before we figured out that he was starving. he also couldn't manage to use the call button all the time either. (But the rabbi in the place came every day to lay tefillin with my father since he couldn't do it himself. And the rabbi somehow didn't notice all the untouched food trays.) We ended up having to spend 18 hours a day with dad. And you cannot begin to imagine how this affected all our families. Life didn't stop for the rest of us because my dad was sick.

I know all the stories about how these places are overworked and overwhelmed but why should we accept that? I find it disgusting that in a frum facility there isn't more being done by the community.

Anonymous said...

Mira--I'm sorry you had to go through that with your father but I have a question. You say that more needs to be done by the community. After your father came home and being that you knew what goes on in these places, did you ever go back to visit as a volunteer? We are always saying what the community needs to do, and sometimes there does need to be an organized effort by shuls and by chesed organizations, but individuals also need to play a part. Community has to mean everybody, not just somebody else.

ProfK said...

I just dropped in for a minute to view comments and would like to add this. The Bikur Cholim of SI does include nursing home visitations as part of its programs. There's a large group of volunteers who visit the homes where frum people may be, including teenagers. The Golden Gate Rehab center is strictly kosher and is within the eruv for the Willowbrook community. Volunteers visit the home on Shabbos when many people may not have visitors. The Bikur Cholim here is particularly sensitive to patients who may not have family or friends available to come see them or help them negotiate the system. Family members who may need to stay over a Shabbos will find ready and plentiful homes where they will be welcomed to stay.

Coming from a community with this attitude you can perhaps understand why I am puzzled by the lack of presence I see of Brooklyn Bikur Cholim groups in the facility where my mom is--and yes, I really do wish that my mom had chosen to come to Golden Gate instead of being in Brooklyn. And if I had known then what I know now, I surely would have insisted on it somehow.