Saturday, 09 December 2006
Utterly, Unalterably Unbearable - Life Inside a Nursing Home
Item: I can’t find the reference right now so you’ll have to take my word for it: something like 90 percent or more of people surveyed would do just about anything to stay out of a traditional nursing home.
Item: AARP’s research division produces some excellent reports and surveys but by their nature are cold recitations of facts and numbers and ratings which, while useful, don’t tell us anything about what it’s really like to be, for example, confined to a nursing home.
Item: AARP, in its member publications and on its website, is mostly a service organization which publishes information related to practical aspects of aging; it’s not much known for telling human stories about the real-life consequences of getting old that might afflict any of us one day.
That’s why this story, Embedded (a marvelous, although sad and terrifying, triple pun), is a surprise coming from AARP, and a cautionary tale for everyone: an inmate’s story of life inside a nursing home.
I have no answers or solutions, and although some people are making slow progress toward creating different and better kinds of long-term care, they won’t happen soon enough for everyone. Read it and weep.
Posted by Ronni Bennett at 05:26 AM | Permalink | Email this post
Comments
'Read it and weep'
...I did, I did indeed.
Posted by: Ian Bertram on Dec 9, 2006 6:33:58 AM
We have to unify, begin taking care of each other.
Posted by: Robert Brady on Dec 9, 2006 7:15:29 AM
Wow... This took me back to when my mother was in a SNF after a knee reconstruction. The staff were, for the most part, great people, but I think that at some level a nursing home is a nursing home.
Scary to contemplate.
Posted by: AlwaysQuestion on Dec 9, 2006 9:40:59 AM
I fear being in a nursing home. Being robbed of my dignity, no longer having a voice in what happens to me. Being patronised when I have no way to bring the person patronising me up short would be hell on earth.
When I was about 17 I worked as a nurses' aid in a nursing home over one summer. It was HARD work and there was no guidance about how to treat people with dignity. We just got lessons on how to lift people. Not a word about dignity and kindness. There were big rooms with up to four people in them. Some were confused, most were resigned to their fate. From time to time, there would be somebody with full use of their faculties and quite resentful. I was always very busy but I tried to have conversations with the residents, but they were woefully brief. I wished for more time to devote to the residents, to talk to them properly, ask them questions and find out about who they were. There was just never enough time.
Having a small bit of experience on the side of the carer, I understand that some carers don't realize they are being patronising, they're just trying to squeeze a tiny bit of kindness into their contact with the resident. They don't actually have the time to devote to the residents they would like to have and have to contend with platitudes and overly sweet terms of endearment in sorry compensation. At least that was the case for me as a 17 year old Iowa school girl.
There MUST be a way to have places where dignity and kindness are given priority during long term care and are affordable to EVERYBODY.
Posted by: Peggy on Dec 9, 2006 9:53:23 AM
A piece of un-asked for advice: The best thing that anyone in the general population can do to improve the lives of those who are in skilled nursing homes is the one thing that most people are reluctant to do: visit them! If you know a resident, or even if you don't, please try to take an hour or two each month (at least) to visit a nearby skilled nursing home. Staff are, indeed, being taught to treat their residents with dignity. They may fall short, at times (don't we all?), but they are being taught.
For the visitor to a skilled nursing home: 1) make it a practice to treat "your" resident(s) with dignity (especially the children of residents sometimes fail to remember to do this!). 2) Get to know the staff--well enough that you know the functions (and, hopefully, names) of those involved in the care of "your" resident(s). 3) If you know of a way that the staff can help "your" resident's situation, ask the resident if you may act on his/her behalf in speaking with the duty nurse, social worker, director of nursing, or the director of the facility. Often, there are small ways in which life can be made "better" for residents by providing a long bed, peanut butter on the breakfast toast, clipping the call button to a pillow case, et cetera. Residents are sometimes reluctant to "complain"--because they are not assertive, or because they believe that they will be "retaliated" against by the staff. While there is no 100% guarantee that retaliation will not take place, there are statutes against it in most (if not all) states. 4) If a person is competent, mentally, deal with him/her honestly. Especially, it is important that you fulfill any commitments that you make to them. (I'll be back to see you soon.) 5) If a person is not competent, deal with them in their own world. It is not helpful to argue with a resident that she has only 3 children if she has told you that she has 12. Show an interest. Ask their names, ages, what they are doing, et cetera. 6) Above all: be a friend. The biggest illness in most nursing homes is the isolation that residents feel. A facility can try, mightily; but, there is no way that professional staff/volunteers can replace the participation of family and friends--on a regular basis. 7) If an issue of serious consequence comes up concerning the resident and their treatment, ask the staff (best, the director of the facility) for the name of the facility's assigned long-term care (LTC) ombudsman, if they have one. The LTC ombudsman may be a volunteer or paid person, outside the facility, who acts on behalf of the state. Federal law requires that each state have an ombudsman program, but not all facilities will have one. If not, ask for the name of the regional or state ombudsman with whom to pursue the issue. (A contact number for the ombudsman program should be posted on a centrally-located bulletin board. BTW: You can glean much information from bulletin boards.)
There is another benefit of a resident's having a lot of visitors. Believe it or not, it is human nature for the staff to try to do a fabulous job for a resident who is obviously cherished by "outsiders".
Posted by: Cop Car on Dec 9, 2006 10:52:58 AM
P.S. Allow me to clarify my use of the word "treatment" in the above comment. I am not addressing medical treatment. I am addressing the way in which the resident is treated in the non-medical use of the word.
Posted by: Cop Car on Dec 9, 2006 10:56:06 AM
If you don't know about the work of Carole Herman and her "Foundation Aiding the Elderly" I encourage you read my blog called "Taking a Stand" in the "Making a Difference" category. Her website is www.4Fate.org and she has been a crusader against the horrors and often criminal neglect in nursing homes for almost 20 years. She is an inspiration and is at age where she can use all the help she can get.
Posted by: sereneambition on Dec 9, 2006 11:39:41 AM
This made me cry a lot!
My worst nightmare is going into such a facility & given my present circumstances, I have no doubt I'll wind up in one of the
"nightmare" facilities unless my children decide to help. I fear for that every day of my life.
My gentleman friend's mother is 94 & isin a nice assisted-living facility & each day one of her 9 children comes by to do whatever is needed for her. She is a very blessed woman. Many of us have children who live at a distance & can't visit often & have no one to monitor our care. That it needs to be monitored is a tragedy.
Posted by: Kay Dennison on Dec 9, 2006 12:01:38 PM
Ronni, I AM weeping...truly weeping. Reading this brings back some very sad times with my own mother in the last few years of her life. I've seen first hand how many patients are treated in nursing homes...and, I've been permanently affected by the hurt and pain on their faces. My mother passed away this past June. The last six months of her life were crushing...more difficult than I could anticipate, that culminated in putting my mom in a nursing home and then finally under hospice care. Daily visits seemed to help both my mother and I;and I felt the need to be there to stay aware of her situation and the care she needed...and received. I'll never be sorry I did that. Many of those elderly patients never have even one visitor...heartbreaking. Even with all the visits and attention, it's tolerable at best.
Posted by: Joy on Dec 9, 2006 1:28:03 PM
This is one of the reasons I want to raise and train service dogs. I've already decided my golden retriever ranch will have to be near hospital and nursing home facilities and the dogs will be trained to go on visits.
Posted by: donna on Dec 9, 2006 2:00:40 PM
I couldn't read this - I have LIVED it with my own precious Mother. I just did not want to cloud a sunny day with any personal flashbacks. I did not know that sorrow and rage could co-exist in one person. I sure learned.
Posted by: Susan on Dec 9, 2006 2:10:18 PM
My brother has been living this life for several years. He is lucid, disabled, alone, and bored. He has heroically adapted to the reality of his situation, and rejects offers to join me in Israel. I can visit him only once or twice a year. Anyone in Southern California who wants to visit him, please contact me at savtadotty[at]gmail[dot]com.
Posted by: savtadotty on Dec 9, 2006 5:26:54 PM
Thank you for drawing our attention to this article. I suggest we all send it to our senators, and to our children! While my mom was in a rehabilitation center, the best on Cape Cod, I witnessed similar behavior and activities. I used to push her around the center in a wheelchair, past the nursing wing. What struck me were the residents, all in wheelchairs, hovering near the entryway, in the hope of rescue. This experience made me choose home care. At the time my daughters, in their ignorance, wanted me to “get my life back” and put their grandma in a nursing home. I homecared my mom for seven months. Homecare, with hospice at the end, is a viable option that needs valorization. I learned about a program in Vermont, which actually pays caregivers in a home situation. Maybe we should all move to Vermont!
Posted by: Alexandra on Dec 9, 2006 8:25:00 PM
Thanks, Ronni, for directing us to that amazing piece.
Posted by: susan harris on Dec 10, 2006 7:21:57 AM
A remarkable piece. Reminded me of the times when I visited my late uncle, last May, and my late aunt some 20 years ago. Sent a knot to my throat too. Quite frightening, and unfortunately international.
Posted by: Claude on Dec 10, 2006 7:57:39 AM
many thanks to Cop Car and serene ambition for moving the exchange beyond the aint-it-awful. i have had both personal and professional experience with both extremes in nursing come care. now these two commenters offer caring suggestions for what we ourselves could do.
Posted by: naomi dagen bloom on Dec 10, 2006 10:18:57 AM
Regarding Naomi Dagen Bloom's comment, I wish to make clear that "ain't it awful" comments (as Naomi labels them) are as valid as others. While solutions are good, it is also a good for issues to be raised and for readers to acknowledge them and reinforce them with personal experience.
All comments are welcome on Time Goes By except those that demean or dismiss any group or person.
Posted by: Ronni Bennett on Dec 10, 2006 10:52:17 AM
A couple of commentors have been kind enough to correspond with me, by email, on my previous comment. Perhaps not entirely obviously, I was addressing the situation in the USA. (I live in Kansas, USA.) Too, a "shortfall" in the long-term care ombudsman program came to mind during these exchanges. A LTC Ombudsman has jurisdiction, only, in a facility that is licensed by the state.
Ronni--Your acceptance of varying points of view continue to make your blog a treasured site. Thank you.
Posted by: Cop Car on Dec 10, 2006 12:35:46 PM
This is a sad subject for me because my husband, who died of multiple malignant brain tumors, was too difficult a patient to be cared for at home and had to be put in a nursing home. He was unable to speak after exploratory surgery and the hell he endured can only be imagined. Visiting him under those conditions was unbearable for my daughter and myself. We had to steel ourselves before entering because of the odor. They used some sort of disinfectant to cover the smell of urine and it was worse than the odor it was meant to cover. The place reminded me of the movie, "The Snake Pit" because of the plaintive cries of some of the patients. My husband's mind was still vibrant, but he was, of necessity, placed in the ward with the dementia patients. Those suffering from dementia cried out for their mothers and for help ceaslessly. I will always hear the poor woman who constantly asked, "Mama, why don't you love me?"
We must strive to make home health care possible for those who are still mentally alert ranther than subjecting them to the environment I have just described. The money spent on nursing home care would more than pay for home caregivers and the special equipment needed so that the patients can end their lives in dignity in familiar surroundings.
I realize that there are good nursing homes but even the best ones are depressing. I pray that the end of my life is not spent in such a place.
Posted by: Darlene on Dec 10, 2006 1:26:46 PM
It won't make you feel better about nursing homes, but a well written, beautiful true story about the bond between a 93 year old nursing home resident and a 20 year old black man from the 'hood makes for a highly appropriate read. By Sonny Kleinfield, a New York Times reporter, the book is HIS OLDEST FRIEND. (No part of the title is in caps in actuality.)
Posted by: leah on Dec 10, 2006 4:34:53 PM
To be fair, there are some good nursing homes where people receive good care, but they seem to be in the minority. Most of us over 55 don't want to be in such a place.
Posted by: Paul on Dec 10, 2006 11:28:59 PM
To be fair, there are some good nursing homes where people receive good care, but they seem to be in the minority. Most of us over 55 don't want to be in such a place.
Posted by: Paul on Dec 10, 2006 11:30:42 PM
The writer of this article certainly describes well what some individuals can experience in the various types of facilities that provide long term, skilled, rehabilitation care, assisted living options.
Unfortunately, the quality of these facilities can vary widely. From what I've seen, the most desirable facilities are generally those associated with retirement communities which provide a continuum of levels of care from independent, assisted living, to long term care in a skilled nursing facility.
Regrettably, the cost of these facilities, if you have not bought into the retirement communities residential plan and, instead want to come in as a "community" patient, may well be prohibitive for many once you no longer have your costs covered for skilled level care. In most cases the patients they accept have their own insurance, or if they have Medicare they also have a backup private supplemental insurance plan (typically don't accept patients with medicaid, or medi-cal in Calif.)
I am definitely a proponent of people staying in their own homes with funds provided to care for them there. Many people will need assistance with those costs, as they are not inexpensive, especially if the loved one needs care 24 hrs a day.
I would like to see a more concentrated effort made by Medicare to analyze and compare costs for keeping most people in their homes compared with institutional care.
I would expect a certain segment of those needing care would not be able to stay in their own home for a variety of reasons i.e. selected medical and psychological issues. Many other people would be better off in their own home, IF needed, qualified caregivers were available.
My experience was that good caregivers were few (less than half of those I encountered were suitable) even though my mother was mentally sound. Too many had concluded that since she was having help, though her situation was explained, she was somehow "less than" psychologically.
Communication in a patronizing manner with "cutsey" terms of endearment is demeaning, insulting to the dignity of the patient.
Posted by: joared on Dec 10, 2006 11:54:31 PM
This is indeed a moving piece. But I look at it from the view of the helpers in the rehab center. They are doing the best they can in a difficult situation with too much to do.
I was in a similar rehab center for two weeks, three years ago. I had a roommate who watched Animal Planet on TV all day. I found that to be wonderful therapy. The physical therapists were cheerful as they developed programs for every disability. They wouldn't let us walk alone for fear of falling, but I wheeled my wheelchair around the place to meet others and see how the system works.
What isn't mentioned in this story is daily visits of family and friends. Anyone in an institutional setting needs ombudsmen. I would prefer this to the isolation of living alone if I couldn't get out and didn't have daily visitors.
Posted by: Poppy on Dec 11, 2006 9:34:04 AM
What concerned me the most in the story is how the nursing home used chemical and physical restraints. The author even cited the federal regulations against that type of use. I wonder what kind of oversight the state had over nursing homes in that state.
Also did you notice that to live independently he had to find his own aides. I know people who depend on aides coming to their homes and they are as helpless as people in a nursing home. The system of care for the aging and disabled is shameful. As a nation we seem to be unwilling to put money into the care of people and would rather build and staff new prisons. You get better pay to be a prison guard than you would as a nursing home staff or a pre-school teacher.
Posted by: knomad on Dec 11, 2006 11:31:11 AM
My sister, who worked for many years
in a Georgia nursing home, said that
almost half the residents could have
been living in an assisted living place. But they were in the nursing home because Medicaid will pay those
fees, but will not pay for assisted living.
Posted by: RLB on Dec 15, 2006 12:15:53 AM
We are doing everything we can right now to keep our friend Duck in his own apartment in a senior highrise. A thrombosis robbed him of much of his memory, and no matter how many times we tell him to stay home, he goes for a walk. Sometimes he ends up twenty miles away...how he get's home, we do not know. Some times he knows his address....sometimes not. He has no sense of time or day, so he leaves at 0430 am for a pm dentist appointment. He gets some help from the county, but that help isn't there every day. Nor are we. Yet he wants to stay home among his art, his familiar things, and he can't much longer.
Posted by: Georgette on Dec 15, 2006 5:27:56 PM
