In hopes that all caregivers and care recipients can spare five minutes…
Check out Sarah Meyer’s 5-minute breath meditation audio.
In hopes that all caregivers and care recipients can spare five minutes…
Check out Sarah Meyer’s 5-minute breath meditation audio.
This is a good article on why some seniors refuse home health care after hospitalization. Medicare’s “home health benefit” is described generally.
Reasons seniors refuse care include:
* thinking that care is the first step in someone taking away independence
* not wanting strangers in the home
* not wanting someone to see hoarding or physical neglect in the home
On top of this, many seniors have:
* “unrealistic expectations of what recovering from a hospitalization will entail”
* compromised cognition, meaning they cannot understand their own needs or limitations
Some suggestions were given for communicating with seniors:
* Use plain language. For example: “A nurse will check your medications and make sure they’re all in order. She’ll assess if you need physical therapy to help you regain your strength. And she’ll teach you and family members how to care for you once home care is over.”
* Rather than saying “Look, we think you really need help,” say “We want to help you take care of yourself.”
* “Emphasizing that a physician has recommended home health care can also be helpful.”
* When meeting resistance from a senior, say “Tell me more. What are you concerned about?”
The full article is copied below.
Some Seniors Just Want To Be Left Alone, Which Can Lead To Problems
By Judith Graham
Kaiser Health News
June 15, 2017
The 84-year-old man who had suffered a mini-stroke was insistent as he spoke to a social worker about being discharged from the hospital: He didn’t want anyone coming into his home, and he didn’t think he needed any help.
So the social worker canceled an order for home health care services. And the patient went back to his apartment without plans for follow-up care in place.
When his daughter, Lisa Winstel, found out what had happened she was furious. She’d spent a lot of time trying to convince her father that a few weeks of help at home was a good idea. And she’d asked the social worker to be in touch if there were any problems.
Similar scenarios occur surprisingly often: As many as 28 percent of patients offered home health care when they’re being discharged from a hospital — mostly older adults — say “no” to those services, according to a new report.
Understanding why this happens and what can be done about it is important — part of getting smarter about getting older.
Refusing home health care after a hospitalization puts patients at risk of a difficult, incomplete or slower-than-anticipated recovery. Without these services, older adults’ odds of being readmitted to the hospital within 30 or 60 days double, according to one study.
Why, then, do seniors, resist getting this assistance?
“There are a lot of misperceptions about what home health care is,” said Carol Levine, director of the United Hospital Fund’s Families and Health Care Project, a sponsor of the new report.
Under Medicare, home health care services are available to older adults who are homebound and need intermittent skilled care from a nurse, a physical therapist or a speech therapist, among other medical providers.
Typically, these services last four to six weeks after a hospitalization, with a nurse visiting several times a week. Some patients receive them for much longer.
Many seniors and caregivers confuse home health care with “home care” delivered by aides who help people shower or get dressed or who cook, clean and serve as a companion. The two types of services are not the same: Home health care is delivered by medical professionals; home care is not. Nor is home care covered by Medicare, for the most part.
This was the mistake Winstel’s father made. He thought he was being offered an aide who would come to his apartment every day for several hours. “I don’t want a babysitter,” he complained to Winstel, chief operating officer of the Caregiver Action Network.
Like many other seniors, this older man was proud of living on his own and didn’t want to become dependent on anyone.
“Older adults are quite concerned about their independence, and they worry that this might be the first step in someone trying to take that away,” said Dr. Leslie Kernisan, a San Francisco geriatrician and creator of the website Better Health While Aging.
Other reasons for refusals: Seniors see their homes as sanctums, and they don’t want strangers invading their privacy. They think they’ve been getting along just fine and have unrealistic expectations of what recovering from a hospitalization will entail.
Or there are circumstances at home — perhaps hoarding, perhaps physical neglect — that an older adult doesn’t want someone to see. Or the patient’s cognition is compromised and he doesn’t understand his needs or limitations. Or cost is a concern.
Robert Rosati, vice president of research and quality at Visiting Nurse Association Health Group, New Jersey’s largest private home health care provider, said about 6 percent of seniors who’ve agreed to receive home health care from his organization after a hospitalization end up refusing services.
Often, a breakdown in communication is responsible. Patients haven’t been told, in clear and concrete terms, which services would be provided, by whom, for how long, how much it would cost and what the expected benefit would be. So, they don’t understand what they’re getting into, prompting resistance, Rosati said.
Kathy Bowles, director of the Center for Home Care Policy & Research at the Visiting Nurse Service of New York, suggests a plain-language, positive way to convey this information. For example: “A nurse will check your medications and make sure they’re all in order. She’ll assess if you need physical therapy to help you regain your strength. And she’ll teach you and family members how to care for you once home care is over.”
“A lot of resistance arises from pride,” said Bowles, also a professor of nursing excellence at the University of Pennsylvania. “The conversation has to change from ‘Look, we think you really need help,’ to ‘We want to help you take care of yourself.’ ”
Emphasizing that a physician has recommended home health care can also be helpful. “In my experience, if a doctor says ‘I’d like a nurse to come see you and check that you’re feeling better,’ people are fairly responsive,” Kernisan said.
Instead of arguing with an older adult who says “I don’t want any assistance,” try to follow up by asking “Tell me more. What are you concerned about?” Kernisan suggested. “People really want to feel listened to and validated, not lectured to.”
This isn’t to suggest that persuading an older adult to accept unwanted help is easy. It’s not.
Last year, Winstel’s father had a medical device implanted in his spine to relieve pain from spinal stenosis — an outpatient procedure. Once again, he declined postoperative help.
Two days later, Winstel got a phone call from her dad, who had collapsed and couldn’t get up from the floor. Winstel said she’d call 911. “No, I don’t want someone coming in and finding me like this,” her father insisted. “You have to come.”
Later, at the hospital, doctors diagnosed an adverse reaction to medication and a surgical site infection on her father’s back. “He lives alone. He can’t reach back there. He wasn’t caring for the wound properly,” Winstel explained.
Extensive, heated conversations followed, during which her father insisted he was never going to change. “For him, living independently carries risks, and he’s willing to accept those risks,” Winstel said.
She hopes the new report on seniors refusing home health care will jump-start a conversation about how to bring caregivers into the process and how recommendations should be conveyed. “As the daughter of someone who has refused care, understanding that this is something lots of people go through makes me feel a little less crazy,” Winstel said.
KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.
Though this blog post is written by people with Lewy Body Dementia, very little of this is specific to LBD, which is why I’m sharing it on our blog. Whenever you read “LBD” or “Lewy body dementia,” just replace it with the disorder you are dealing.
Last year, an Ann Arbor support group for those with an LBD diagnosis created a list of things to keep in mind when you have a family member or friend with LBD. These are suggestions of what families and friends “can do and don’t do.” The list includes items such as:
* give me some slack
* don’t hover
* let me make a mistake
The list is posted to the University of Michigan Health Blogs. I’ve copied most of the blog post below.
When you love someone with Lewy Body Dementia
Suggestions for family and friends from people with LBD
Posted by Members of the Ann Arbor Support Group on April 22, 2016
University of Michigan Health Blogs
Lewy Body Dementia (LBD) is a disease that affects a person’s thinking and motor skills. Due to the illness, people with LBD may behave in ways that are different than the past. LBD causes people to absorb information more slowly, have problems with balance, have difficulty handling things, experience hallucinations and sleep more, among other symptoms.
It can be hard for friends and family to understand how someone with LBD feels—and even harder to know what to say or do. Members of the Ann Arbor Support Group for those with LBD have put together some suggestions.
I have Lewy Body Dementia (LBD). Please . . .
Give me some slack. It takes me a little longer to do things because my brain works more slowly, but I’ll get there. Just give me time.
Don’t hover. It’s annoying and sometimes it makes me nervous. You probably wouldn’t like someone hovering over you constantly.
Let me make the mistake—don’t do it for me. I’m sure you want to help, but it can feel demeaning to be treated as though I’m incapable of doing things for myself.
Continue to treat me like I’m part of the family. My illness is not contagious and I still care for you as much as ever. Invite me to things and if I don’t feel like going, I’ll let you know.
Don’t make assumptions—ask me. For example, just because I was tired one day doesn’t mean I’m always too tired to do something. Please don’t think for me—ask me.
Be patient when we’re talking. Sometimes I lose my train of thought, but give me a chance. My thought will come back around.
If you can’t hear me, ask me to speak up. I’m not always aware that my voice may have grown softer. If you don’t tell me, I don’t know you can’t hear me.
Don’t talk about me as though I’m not there. My thinking may be affected but I can still hear. Would you like to be treated as though you didn’t exist?
Remember that the time of day and medications can affect my energy and alertness. Sometimes my meds—and when I’ve taken them—can really impact how “with it” I appear. The effects are as unpredictable to me as they are to you.
A few of the things we appreciate
This list wouldn’t be complete if it only focused on what not to do. Group members recognize how much love and support their family and friends give them. Here are some of the things we appreciate.
I like it when . . .
You help with my medications. I appreciate your helping me stay healthy by organizing my meds and giving me reminders.
You go to doctors’ appointments with me. It’s good to have another set of ears taking in the information and advocating on my behalf.
We’re working as a team. This disease is affecting you as well as me and it’s good to feel that we’re dealing with it together.
You research helpful LBD information and resources. I appreciate the effort you put into looking for new information that can help us deal with this disease.
A final note for caregivers
Be sure to take care of yourselves. It’s great you’re concerned about me, but if you wear yourself out, how will you be able to help me? Remember, we’re in this together.
This list is not comprehensive
It simply reflects the thoughts of the members of the Ann Arbor Support Group. If you are not sure what is helpful, ask your loved one. And keep in mind that things are likely to change as the disease progresses. Use this document to start a conversation with your LBD “teammate.”
Note: This information was created by people with Lewy Body Dementia (LBD) who attend a support group just for them while their care partners meet in another room.
This blog post to the Caregiver Space from February 2017 is about a caregiver who learned that she can’t be “on” all the time in caring for her husband.
She started off by thinking:
* “When my husband first got sick, it felt good to be needed”
* “Constant interruptions were scrambling my brain!”
* “I didn’t even say the word ‘no’ but I still felt so guilty!”
She realized she had to “learn how to take care of both [her husband and herself] without burning the candle at both ends.”
She was able to get her life back by pushing her husband to do more for himself. She says: “I started asking him to see if he can do things on his own. And he could. It was hard at first, but it was a fun challenge for us to do together. … As I pushed him to do more for himself, he also started to interrupt me less. … Now we have a system that I check on him at regular intervals.”
I don’t know if this approach will work for everyone; I guess it depends on how significant the needs of your care recipient are. But it sounds like good overall advice.
I can’t be ON all the time
by Sara Waltrip, Guest Author
Feb 13, 2017
Being a 24/7 caregiver means there’s someone who needs you 24/7. But I’m learning to accept that it’s just not possible.
Believe me, I tried. For the first few months I was unstoppable! Any time Joe needed me, I was there in an instant. It didn’t matter what I was doing, how tired I was, or how many other things needed to get done.
And then I couldn’t do it any more.
I started to slow down. I started to get sick all the time. I started to get angry. There used to be two of us in this marriage and it felt like now I was all alone, responsible for both of us. I felt bitter and trapped. That’s not the person I wanted to be. I don’t blame Joe for getting sick, but I also couldn’t cope with how much our lives had changed. I wasn’t angry at him, but I was angry and I was taking it out on him.
Something needed to change.
I can’t make him not sick. The doctors can’t, either. I needed to stop hoping for a miraculous recovery and accept that this is the situation I’m in and it’s not going to change. I can be wonder woman for a little while, but I can’t keep it up forever.
I was going to have to learn how to take care of both of us without burning the candle at both ends.
Joe is a grown man, the type of guy who never stopped to ask for directions or get help from anyone. He was a real independent, take charge kind of guy. I loved that about him. He took care of me all the time. I really leaned on him for a lot of things. At first, when he accepted that he needed to let me help him, I felt empowered. I finally got to return the love and care he gave to me all of those years. I could show how strong I really am. After a while, it got harder. I started to resent how much I was doing for him. While he leaned on me for a lot, I know he didn’t like it.
Step one for learning to do this long-term was pushing him to do more for himself. I can wait on him hand and foot when he’s having a particularly bad day, but not every day. There are certain things he can’t do for himself and that’s fine. But I realized I was babying him. There’s more that he can do than he’s doing. While he’s learned to let me do things for him and expects me to do things, he doesn’t like it any more than I do.
I started asking him to see if he can do things on his own. And he could. It was hard at first, but it was a fun challenge for us to do together. For a few months we discovered that he could do a little more for himself each day. Then we hit a plateau and it was frustrating, but that’s okay. His condition isn’t getting better, so now we know the maximum he can do on a good day and on a bad day and everything in-between.
As I pushed him to do more for himself, he also started to interrupt me less. Some things need to be done right then, it’s not optional. Other things can wait. He’d been interrupting me to ask for help for things that weren’t urgent and I was letting him.
Now we have a system that I check on him at regular intervals. He knows the longest amount of time he’ll have to wait before I’ll be there with him again and he can decide if he should call me in before that.
I can’t express how much this has improved our lives. He feels more independent. I feel more independent. And I can finally get things done. I had no idea how much trying to juggle a dozen tasks at once with constant interruptions was scrambling my brain!
Now some days I can do the stuff that needs to get done, from start to finish. When I hear him call for me I know it’s because it’s important.
I feel like I have my life back.
At first I felt like I was really letting Joe down by saying no to him. I didn’t even actually say ‘no’ and I still felt so guilty! But then I saw how happy it made him to get back to being the sort of guy who didn’t need someone else’s help all the time. We’re both so much happier now.
There are still bad days. It’s still exhausting. But now I know I can keep doing this. I could never stop being Joe’s caregiver — now I know we can keep this up, til death do us part.
This is a good article published yesterday on NextAvenue (nextavenue.org). It addresses why you need a healthcare power-of-attorney, how to choose one (six questions to consider), and what kinds of information you need to discuss with your healthcare agent.
In our local support group, there are many spouses who care for someone with dementia yet the person with dementia remains the well spouse’s healthcare power-of-attorney.
We should ALL have a healthcare proxy or agent.
The full article is copied below.
Why You Need a Health Care Proxy and How to Choose One
Taking this important step can make all the difference in a health crisis
June 2, 2017
By Debbie Reslock
How would you finish this sentence? “The end-of-life care I would want is …”
Would you want all possible measures taken? To be in a hospital or at home? Surrounded by family and friends? Once you’ve decided, now imagine arriving at an emergency room unable to speak or tell anyone what you want. If you haven’t chosen someone to express your wishes — a health care proxy (also known as a health care agent or a power of attorney for health care) — they may never be known.
According to The Conversation Project (theconversationproject.org), co-founded by Pulitzer Prize-winning writer Ellen Goodman in collaboration with the Institute for Healthcare Improvement, half of those 65 and older ending up at the hospital are unable to speak for themselves. The organization has created a starter kit to help us talk about the care we’d want as well as a guide on how to choose a health care proxy.
Why You Need a Proxy
Dr. Javette Orgain has experienced up close what happens when a medical crisis hits and there’s no proxy. Orgain practices medicine at VITAS Healthcare in Chicago and is an associate professor at the University of Illinois-Chicago, department of family medicine.
“I’ve seen families argue over who should make the decisions and what those decisions should be,” Orgain says, adding that some have even ended up in the courts.
Stepping in with her sisters to fill the proxy role for their mother and aunt, Orgain says that as a doctor many decisions were deferred to her. But when it came time to choose who would make her end-of-life care decisions if she was unable, Orgain chose a lifelong friend. She knew there wouldn’t be the emotional pull her family might have that would shift them away from carrying out her wishes.
Choose the Right Person as a Health Care Proxy
It’s vital to find the person you can trust. Orgain says she’s witnessed what happens when a health care proxy doesn’t honor what was wanted.
“It’s the most harrowing of experiences when the proxy isn’t chosen well,” says Orgain. “In fact, choosing the right proxy is as important as having a proxy.”
When families haven’t had the conversation, they’re often left at the bedside of their ill loved one with many factors pushing on them, says Dr. Jessica Zitter, who practices critical and palliative care at Highland Hospital in Oakland, Calif., and authored the book Extreme Measures: Finding a Better Path to the End of Life.
“There can often be a push to keep people alive on a machine. If the family doesn’t know what would be wanted, we try to support them as substitute or surrogate decision makers, but it’s very stressful and painful for them,” Zitter says.
How to Choose the Best Health Care Proxy
When choosing someone to be your voice, here are a few questions The Conversation Project recommends considering:
* Will they be able to make decisions for you, even if their own wishes are different from yours?
* Will their emotional connection to you get in the way of making decisions on your behalf?
* Will they stand up for you?
* Will they be comfortable asking questions of busy doctors and other providers?
* Will they ask for clarification if the answer or situation isn’t understood?
* Will they be able to make decisions in changing situations?
From Doctor to Patient
Dr. Janet Sollod in San Francisco has seen what can happen in a medical situation from both the physician and patient side. Diagnosed with cancer 10 years ago and now no longer practicing, she found herself able to navigate confusing waters only because of her medical knowledge.
When it came time to name her own health care proxy, she knew what was important.
“I wanted someone who could ask questions and not just say ‘Yes, doctor,’” Sollod says, “or if I’m unconscious, to ask the doctors why they’re doing this test and not that one.” She wanted a proxy with a medical background. But even though her father is a physician, she knew it would be too hard for him. “It’s just too close to home,” she says.
So along with her mother, Sollod chose two close friends: one as an advocate and the other with strong medical knowledge who will ask the right questions. What she wants is for the three of them to make the best decisions together.
(The Conversation Project cautions, however, that it is generally not advisable to name more than one person to be a proxy, because if they disagree on a difficult decision, things could get complicated. You should, however, always name an alternate proxy in case your first choice becomes unavailable.)
Sollod cautions that the proxy doesn’t have to be a family member. “It might be a close friend who knows what you want,” she says. “And don’t feel bad about offending anyone. This is your life and it’s your decision.”
Put It on Paper
Having the conversations is the first step. But you’re not finished with the task of appointing a health care proxy until you put it in writing.
You will make the designation by filling out the health care proxy document. In an advance directive, you outline your wishes for health care should you be unable to speak for yourself.
You may be able to do this with one form, which you can complete without an attorney. You may need witnesses, however. Find your state’s advance directive by going to the National Hospice and Palliative Care Organization’s CaringInfo (caringinfo.org). [California’s is here: www.caringinfo.org/files/public/ad/California.pdf]
Unfortunately, even when people have the conversation, they can still end up on what Zitter calls the end-of-life conveyor belt. Featured in the documentary, Extremis, Zitter is shown talking to a woman with the same genetic disease her father and sister died from. The woman told her brother she wanted to die at home and yet she still ended up in the intensive care unit on a breathing machine.
It’s best for patients and their physicians to understand under what conditions a person wants to be resuscitated, be intubated or receive comfort care only. But we need to get the message out, too, that more treatment is not necessarily better, Zitter says.
There’s also the phenomenon of what she calls “the sister who flew in from the coast.” Leaving your loved one to make the decision when that person is so fragile and emotional usually means that if anyone questions it, they’ll most likely shift to prolonging life, even if that requires using machines that the person didn’t want. In fact, Zitter says, the default family and medical decision is usually to keep the heart beating.
Boomers Leading the Way
We’re making progress in talking more openly about our end-of-life decisions. Goodman is optimistic that boomers will continue to play a part.
“They changed the way we looked at birth and they’ll change the way we look at death and how we die,” she says.
We need to sit at the kitchen table and have these conversations, Goodman says, and then we need to bring it into the medical institutions. Notes Goodman: “It wasn’t a doctor who changed the way we viewed births, it was us. We said this isn’t just a medical experience, it’s a human experience. Dying needs to be seen that way too.”
© Twin Cities Public Television – 2017. All rights reserved.
On Oprah Winfrey’s TV channel, she has a show called “SuperSoulSunday.” Earlier this month, she interviewed BJ Miller, MD, a hospice and palliative care specialist at UCSF. Dr. Miller shares “his revelations about a subject that is often taboo in our culture — the experience of death.” You can watch the interview online at:
If you’d like to read more about Dr. Miller, hospice specialist and triple amputee, check out Brain Support Network’s blog post from January 2017:
The interview with Dr. Miller is followed by a short film about the late Paul Kalanithi, MD, who wrote the best selling book “When Breath Becomes Air.”
Deb, one of our local support group members, listened to the interview and shared some highlights with us. Deb’s husband recently passed away with Lewy body dementia.
Deb’s Notes from
Guest: BJ Miller
Season 7 Episode 709
Aired on 05/07/2017
Here are my notes from a fascinating episode of the OWN (Oprah Winfrey Network) show “Super Soul Sunday.” Oprah interviewed palliative care and hospice physician, Dr. B.J. Miller.
1. Life is not avoiding suffering, but finding meaning.
2. Dying people are still living. There is a continuity of existence such that death is part of living.
3. Being a human being is hard. It helps to have something to push against to get us to rise to the challenge. (Miller suffered an accident as a teenager and is a triple amputee.)
4. The fact that we all die makes life precious. We realize that time is short and that delays have consequences.
5. We should see the silver linings in our lives every day.
6. In order to die well and be at peace with ourselves and have no regrets, we should live well. Every day we should do a self-check: 1) Am I doing something I really care about?; 2) Am I doing what I really want to do?; 3) Did I tell my loved ones that I love them?
7. We all have these negative feelings about death and losing control. Yet given the choice to live forever, most people would not choose it. So death is not so negative. And you can get to the point that you even welcome death.
8. One of the best things about living is being able to give and receive love.
I occasionally read the “Nurse Advocate,” Anne Llewellyn, who has a LinkedIn Pulse site. In a recent post, she explains what a patient advocate is and how an advocate can help. The author says: “Everyone needs an advocate when they are thrust into the complex word of health care.” A physician made the following comment on the blog post: “The system is difficult to navigate for those with healthcare experience, yet alone the layperson. Healthcare itself is not a safe place.”
The author says: “Keep in mind advocates do not provide hands-on care, but rather do research, meet with your health care team to understand the plan of care to ensure it meets your individual needs. Advocates work on your behalf to break down barriers that exist in our complex system and ensure you are safe and have the information and resources to navigate the system and make decisions to address your individual needs. They ensure you have a voice in your care and are at the center of the health care system.”
There are several kinds of advocates – Independent Patient Advocates, Hospital Advocates, Billing Advocates, and Housing Advocates. Although the author says that there are many ways to find an advocate, the only method suggested in the article is a web search.
Here’s a link to the article:
Everyone needs an advocate when they are thrust into the complex world of health care
Published on May 16, 2017
by Anne Llewellyn, nurse advocate
Here’s another useful article from the HelpGuide.org, a website that focuses on mental, emotional, and social health. This one is about relaxation techniques for stress relief. As the article points out: “There is no single relaxation technique that is best for everyone.”
Techniques addressed include: deep breathing, progressive muscle relaxation, mindfulness meditation, body scan meditation, rhythmic exercise, visualization, yoga, tai chi, and even self-massage. Many of these techniques are explored in a mindfulness-based stress reduction (MBSR) class. These classes are held at medical centers, health clinics, senior centers, and many other places. I highly recommend taking a class to find a technique that works for you!
Here’s a link to the article:
Relaxation Techniques for Stress Relief: Using the Power of the Relaxation Response to Reduce Stress and Boost Mood
By Lawrence Robinson, Robert Segal, MA, Jeanne Segal, PhD, and Melinda Smith, MA
Though this article is written for a caregiver website, the suggestions for resilience apply to us all.
The strategy described includes these steps:
* assess the situation
* reframe the situation
* set boundaries
* accept your own abilities
* find support
* remember why you’re here
Here’s a link to the article:
What does it mean to be resilient?
by Cori Carl
Mar 3, 2017
The Caregiver Space
At the recent American Geriatrics Society annual scientific meeting, some interesting research about advance care planning was presented. Reading about that research led me to a simple website called PREPARE at prepareforyourcare.org. The founder of this effort is a Rebecca Sudore, MD, UCSF geriatrician and palliative care specialist.
PREPARE addresses five categories as a means to develop a personalized action plan:
* choosing a medical decision maker
* deciding what matters most in life
* choosing flexibility for your decision maker
* telling others about your wishes
* asking doctors the right questions
The website’s text is large, with lots of graphics. The website “speaks” the content, which is great for those with visual impairments but, fortunately, can be turned off. The site is available in both English and Spanish. According to a Medscape article about the site, the language used is at a fifth-grade level.
PREPARE has created easy-to-use advance health care directives for each state. Here’s a link to the California form:
If you haven’t made your advance care plans, this is another great tool.
For those interested, Dr. Sudore discusses her research in a blog post and podcast on the GeriPal website: