February 28 2018
Written By
Barbara Karnes
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Nursing Home Blues, Part 2

Nursing Home Blues, Part 2


Barbara Karnes - March 18 2018

Hi Linda, in response to your email about your mother’s experience in a nursing facility, unfortunately your story is way too familiar. As we live longer and our population has increased nursing facilities are just not meeting the many needs that residents have. Shortage of staff and the high rate of staff turnover is a major component to this troubling situation.
What can we do? Report inappropriate or lack of care to regulating agencies when you see it. However I don’t think it is abuse that occurs in most cases it is just that we want more for our loved ones in institutions than the basics of care. We want our loved ones given the kind of personal care that due to whatever circumstances we ourselves can’t provide.
Again what can we do? We can follow your example—visit daily, interact with the personnel, bring favorite foods, if possible take your special person out for an adventure (even if it is just a drive). The sense of being isolated by and from family and friends is a huge component to a unhappy and unpleasant experience.
Linda, thank you for asking. As I reread this email I see that I really don’t have an answer for you. I agree there is a problem but I don’t know how to fix it (and that is very frustrating for this fix it personality.)

Linda Hopkins - March 17 2018

Barbara – thanks for all your work. Your booklets and blogs have been very helpful to me.

My mom passed away last July in a new private, Assisted Living Memory Care facility in Northbrook, IL. It was nothing like some of the stories above, so I need to be very grateful for that. It was physically beautiful – and expensive – but it was understaffed, with a fair amount of turnover, a weak activities program and the caregivers assigned to work as the waiters / waitresses, meaning they didn’t have time to help the patients.

As a result, there was really no personal interaction with the patients (saying “hi” and “do you have to go to the bathroom” do not count). I felt I needed to pay for additional care givers for my mom and visit nearly every day to be sure she was well cared for and had someone to talk to. Basically, the place provided decent personal care (toileting, bathing, etc.), average food but no one to facilitate at meals, not great activities and poor social support. I will say that their Dr. didn’t seem to push meds. It never came close to my naive expectations – but given others’ stories, it sounds like paradise — How sad.

We wound up there because i couldn’t get medical support from her doctor – i could never reach him and the nurses answer to everything was “take to to the emergency room” – a terrible experience every time, that always turned out to be a bladder infection. After the last hospital stay, her time in the rehab was terrible – i’m so sorry i accepted that.

Anyway – I wish there were much better alternatives.
How do you think we can help???

Claudia Hauri - March 01 2018

For knowledge about the dying process get Barbara’s book ‘The Final Act of Living’ I heard Barbara speak at Univ. of Miami years ago, & her experience helped my with my mom die at her condo, 24/7 care, with Hospice, just shy of her 101 birthday.
As a Nurse Practitioner ( 40 yrs) I regretfully say that there is few & far between residential care facilities at ANY level that are above a 4 ( (1=low, 10= tops).
Save, save, save, get Long Term Care if possible, contact a church for volunteer help, check with Office/Dept. of Affairs for resources, ask the health care provider for a prescription for care for possible income tax reduction/dependency of person.
Then care for yourself knowing you have done your best.
In Miami the cost of the last year was about $ 50-52,000/year.

Terry Camper - March 01 2018

Don, so many patients in the facility where my mother lives do not have anyone to ‘go to bat’ for them, and I have such sympathy for their situation. I do what I can to speak kindly, offer an assist when possible, or just smile and say hello. These simple gestures mean so much to some of them, but more often I am in a hurry to get back to my own mother, and with her now bed-bound, I see fewer of them, less often. Volunteer organizations are great, but I wholeheartedly agree that career counseling is a very real need in most of these nursing facilities, and often in hospitals, too. I’ve see such a range of ability and compassion in the ‘social worker’ field as well. I hope things are good for you and your wife at this point.

Nancy Buckingham - March 01 2018

Oh!! This does strike a nerve with me. I too am too familiar with many of thes me facilities. My mother was in one for 4 years and we had private sitters. For the past 21 months I have been taking care of my husband and the facilities are worse than what they used to be! Fortunately he’s at home on hospice and I know this has extended his life. He is bedridden, his mind is good some days and other times he is confused.. but most of the time he’s a great patient! I have my brother helping me as he lives with me, I have 2 daughters, one in Nashville that helps out every month!! And my other daughter lives here and has helped out tremendously. I was diagnosed with breast cancer last Oct., had surgery in Nov and radiation in January! Challenging times, however back to the facilities, they need a makeover!! These patients are being treated terribly. My husband is in this condition because an aide helped him go to the bathroom and did not help him get back to bed. It’s sickening what they allow. This facility did not have any liability insurance so therefore there is no legal direction that we can take! New laws need to be made!!

Kathleen Clohessy - February 28 2018

An interesting discussion and a much overlooked topic, particularly the reference to providers (e.g. doctors and hospitals) pushing aggressive, unnecessary, and futile care at the end of life. And though I agree that our for-profit healthcare system bears much of the blame for that, it is also true that the public MUST become more informed and aware about their choices at the end of life. And they must communicate to everyone within earshot what what they do and do not want long before they are being wheeled into the emergency room after a panicked family member calls 911 and “wants everything done.”

Don Eisenberg - February 28 2018

Barbara, I agree about Terry’s comment that it only takes one out-of-sorts caregiver to shatter the patient’s day and peace, and require much more effort on the part of family and others to then “right the ship.” Some years ago my wife was in a cancer unit of a major hospital, after we’d learned her breast cancer had metastasized. While I was at work, the social worker (of all people) came in and told her “I’ve been fighting with the insurance people since you came here- you’re going to have to leave!” Needless to say, I had a “come to Jesus meeting” with a top administrator a few hours later to suggest some career counseling for the young social worker. They then transferred my wife to the “transitional unit” in the same facility in order to satisfy the insurance requirements. I can only imagine what happens to people who do not have someone to “go to bat” for them.

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