Comments for Western New York Alliance for Person-Centered Care Blog

Comment on The Importance of Rhythms for Dementia Patients in Eliminating “Sundowners” and Other “Behaviors” by sagecat22

sagecat22 — Thu, 16 Feb 2012 15:33:00 +0000

I still think it’s some of both, the disease and change of routine.My husband and I moved his mother back to her house after almost a year in assisted living, after her husband died. She has dementia to the point that she cannot live alone, presumably due to Alzheimer’s, so I moved in with her. I went into this arrangement with the idea that we would accomodate her, and that is what we have tried to do. She rests as needed, but still walks through the house from early afternoon until about 8 or 9 p.m., sometimes later. She simply walks from her bedroom to the livingroom sofa, which is made up as a bed for her also, then lies down and sleeps. Sometimes she sleeps for short periods, often just a couple of minutes and is then back up relocating. Sometimes the sleep periods are much longer, but I cannot account for what makes the difference. She is now 92 and seems to be in two day cycles, during which she sleeps the largest part of two days, then spends more time walking back and forth the next two days. She does get up by herself at night and do this, too, some nights more than others. She is very quiet, and sometimes I don’t hear her when she’s up, but I leave snacks like banans or peanut butter toast and water out for her, and they are often gone the next morning. She still eats relatively well, and her ambulation is pretty good, but she seems to have no real interest in anything but sleeping any more. I don’t know what else to do, but continue to accomodate her. Before winter set in, we would walk outdoors daily, and I’m hoping she will be interested in this again when it gets warm enough. She has had very little trouble with falling, and is very careful when she walks, but her strength has decreased considerably over the last few months. .

Comment on The Importance of Rhythms for Dementia Patients in Eliminating “Sundowners” and Other “Behaviors” by Heather Hill

Heather Hill — Wed, 15 Feb 2012 03:47:53 +0000

This is such a good example of many (perhaps most) of the so-called “dementia behaviours” have less to do with abnormal brains and more to do with the abnorrmal situations that people with dementia find themselves in.. It seems the biggest work I have to do when I train staff is to really get across the message that people with dementia will have most of the same needs, reactions etc. as the rest of us – possibly more so because of addtional sensitivities. The label “dementia” often blinds them to this fact. Kitwood’s emphasis on PERSON with dementia (rather than person with DEMENTIA) continues to be relevant.
We need to keep hearing stories like the one from the Beatitudes Home, which give the lie to all those labels and assumptions about behaviours, about the need for drugs etc.
Thank you!

Comment on About Our Bloggers by The Importance of Rhythms for Dementia Patients in Eliminating “Sundowners” and Other “Behaviors” « Western New York Alliance for Person-Centered Care Blog

Mon, 13 Feb 2012 20:15:38 +0000

[...] By Dr. Allen Power, Eden Mentor, St. John’s Home, Rochester, N.Y., Associate Professor of Medicine, University of Rochester [...]

Comment on About Our Bloggers by Life can be awful. Now it has gotten worse! (Paraphrase of Woody Allen’s words and view of life) « Western New York Alliance for Person-Centered Care Blog

Fri, 27 Jan 2012 16:59:53 +0000

[...] By Richard Taylor, Ph.D., Former psychologist, author, “Alzheimer’s From the Inside Out” [...]

Comment on Choice vs. Consent by Susan Rogers, RN, BSN

Susan Rogers, RN, BSN — Fri, 13 Jan 2012 16:28:01 +0000

This problem has roots outside the health care professional’s desire to have a resident do what they want. Truthfully, many professionals just want the resident to be able to do what they want, but there are so many rules/laws/standards that interfere with this. Not to mention the risk of huge lawsuits if something goes wrong because we respected the resident’s wishes but a family is upset when there is an adverse event. The example of the alarm is excellent. As a DON, I very much dislike alarms, including the ones for elopement which one resident said was like being on house arrest. However, if that same resident’s wishes are respected and he sustains an injury because he left our building unattended, we may have serious issues with surveys and lawsuits because we were negligent. The same can pertain to respecting choices for foods – if a resident with dysphagia insists upon eating steak, his wish should be respected, but we should not be liable for the results of his actions. Facilities must minimize risk for jeopardy citations or lawsuits which are costly and distract professionals from actually caring for people even if eventually we are not found to be at fault. We are so busy “covering out butts” we can’t just do the right thing for people. Until these barriers are removed or at least minimized, it will remain difficult to respect every person’s wishes no matter how much we may want to do so. Blaming the professional or facility is not the solution; changing laws and regulations is the only real path to improvement.

Comment on Choice vs. Consent by Carmen Bowman

Carmen Bowman — Thu, 12 Jan 2012 23:00:12 +0000

Excellent insights Kathy, thank you. We need to move away from “consent.” Or how about “informed refusal?” Ugh. This just happened to me recently while visiting residents in the nursing home my daughter and I and our friends go to twice a month in CO. Had not seen Betty in a while, asked how she was. “I fell, now I have an alarm, they made me sign a paper saying I wanted it but I don’t. I had signed a paper that I didn’t want one but they made me sign a new paper but I don’t want the alarm. If I fall I fall.” I asked her how it was to have an alarm, she said, “Terrible, it’s like jail.” Guess what is now the introduction to the latest book I’ve co-authored on Eliminating Alarms, my working title is The New Deficient Practice: Alarms. Who “consents” to being alarmed, let along chooses? Thanks Kathy and Rhonda for having Kathy write this article!

Comment on About Our Bloggers by Choice vs. Consent « Western New York Alliance for Person-Centered Care Blog

Fri, 06 Jan 2012 19:42:41 +0000

[...] By Kathy McCollett, Organizational Culture Change Specialist, PHI [...]

Comment on Through the Looking Glass, Part Two by Leslie Pedtke

Leslie Pedtke — Wed, 28 Dec 2011 15:20:42 +0000

Thank you so much Florence. As 2011 comes to a close, I reflect back on the transformation our home has made in caregiving. I see more great things to come in 2012. Happy New Year!!

Comment on Through the Looking Glass, Part Two by Florence

Florence — Wed, 28 Dec 2011 15:04:57 +0000

Chris, I was so moved and touched by your article.

“Don’t judge others until you have been in their shoes” is such a profound and important element in our interaction with all people. You have put yourself in ‘their shoes’, and by doing so you have been privileged to more deeply understand the elderly or disabled and have given us a deeper appreciation of those we care for.

Comment on Day 20: Who’s the Boss? Providing Person-Centered Care and Caring by Leslie Pedtke

Leslie Pedtke — Tue, 13 Dec 2011 21:48:44 +0000

“We are adjusting well to your mom.” I love that. I see some teachable moments in the very near future for my team.