Helping People Access Hospice Care

Over and over again, I’ve sat in rooms with 30 doctors, and I’ve asked the question, “How many of you refer patients to hospice? Early or late? Out of the 30 doctors perhaps five will raise their hand And usually the referral is made very close to the patient’s death. This is terrible. Patients and their loved ones are being denied a wonderful option that doesn’t cost them anything. That option is hospice.

Here are some of the things I teach doctors about referring to hospice. A hospice referral is similar to a referral to any other specialist. You are still their primary doctor. Hospice care does not mean that the patient can never return to the office or hospital for care. It just means that the focus of care is now on comfort, support and symptom management. The patient still needs you even though you are no longer able to heal their disease. You can however, heal their suffering. You can make sure they’re getting good pain management, good symptom control and help them have a profound and meaningful death. Hospice is a wonderful tool to help your patient in their journey.

Hospice is a team of people that help meet the patient’s and family’s physical, psychological, social and spiritual needs. Hospice provides TLC and support for the patient/family. In fact, hospice works so well that 13% of patients on hospice, will recover and be able to come off of hospice. No matter, being on hospice will increase both the quality and quantity of the person’s remaining days. Wouldn’t you want to live longer and better, even if your days were numbered? I would and I would want that for my loved ones as well.

The referral to the hospice team can be done at any time. Sooner is better than later. Not only is it better for the patient, but researchers found that if elderly spouse of the patient has the support of hospice for their loved one, they probably will not die within the next year after the death. The hospice referral will not only help somebody have a good death, but may end up saving another life.

Have a kind and respectful day.

The Ethical Use of Medical Restraints – The Goal is Restraint Free Care

In 1990, about 30-40% of nursing home residents in the US were restrained. In 2001, less than 9% of nursing home residents were currently restrained. We are slowly getting better at keeping our patients out of restraints in both nursing homes and in hospitals. But we still have room for improvement. In Europe, the rate is less than 5%. The difference between the countries is not what kind of patient is in restraints but what the standard of care of is in that particular country. The good news is that with the reduction of medical restraint use, there has been a significant decrease in patient injuries and deaths.

Ultimately our goal needs to be restraint-free care. As a loved one of the patient, you should be an active participant in helping the staff keep your loved one free of restraints. How do you do this? Here are a few suggestions. The first thing to realize is that there is no one-size fits all solution. No two patients are exactly alike regardless of the diagnosis or the problem. You will want to personalize the solution for your loved one, not the generic patient.

The next thing you want to do is to ask, “Why are they acting like this? What is going on?” Too often we rush to thinking the person has dementia or some other mental deficit, when really the issue might be a reaction to a new medication, untreated pain or some other disease showing up. The sooner you can identify why the bad behavior is showing up, the sooner you will be able to brainstorm to find an appropriate solution. The solution should match the personality of the patient. Are they a patient who has always loved music, done crafts, liked having pictures of their family around, liked to listen to the radio etc. Then choose distractions and solutions that will fit their lifestyle.

You may have to try multiple interventions before you will find one that works. Don’t give up if the first thing you try doesn’t work. Please make the effort to find other solutions rather than tying up your love ones. You wouldn’t want to be tied up against your will and neither do they.

For a great handbook on reducing the use of restraints go to http://www.theconsumervoice.org/node/477.

Have a kind and respectful day.

The Center for Memory Disorders in Orlando, Florida, is hosting a workshop by Viki Kind on January 26, 2011, from 2 PM to 4 PM.

The Center for Memory Disorders in Orlando, Florida, is hosting a workshop by Viki Kind on January 26, 2011, from 2 PM to 4 PM. This program is presented by the Alzheimer’s Association, Central and North Florida Chapter, The Center for Memory Disorders and Visiting Angels.

Please RSVP to 1-800-272-3900 or 407-951-7992
Free Respite Care is available, CEU’s available for nurses.
http://www.memorydisorders.org/cmd_events.htm

Wouldn’t it be a relief to know that you are making the right decisions and doing right by the person in your care? “Empowering Caregivers to Make the Difficult Decisions” is a free two hour workshop led by Viki at The Center for Memory Disorders in Orlando, Florida, on Wednesday, January 26, from 2:00 pm to 4:00 p.m.

The mission of the Center for Memory Disorders is to provide a non-profit, integrated approach to the diagnosis, treatment and support of patients with memory disorders, through the use of professional services, cutting-edge therapies and caregiver respite.

The Center recognizes that chronic, pervasive illness is not only a problem for patients and families, but a concern for the entire community. The Center’s vision is for a community outreach program which will educate, treat and thereby positively impact the overall quality of life of persons suffering from Alzheimer’s and related dementias. The Center’s goals are to provide medical diagnostics, treatments and ancillary services, in conjunction with family education and interventions, the totality of which will result in correct diagnosis and treatment at an earlier stage in the disease process.

GO WISH Cards – A wonderful tool to explain what you want if you were seriously ill

Coda Alliance presents the ‘Go Wish Game’. It gives you an easy, entertaining way to think and talk about what’s important to you if you become seriously ill. The starter game comes with two packs of cards in contrasting colors and instructions for using the cards individually or in pairs.

For more information about the game, and to play on-line, visit www.gowish.org.

Reach And Teach Says:
“A woman at church came up to us and thanked us for having introduced her to Go Wish. She had given her mother a deck of Go Wish cards and had gone through the deck once with her mom. A month later, her mom had fallen into a coma, and her children were facing very difficult decisions about her care. They disagreed with each other and there was a lot of tension. One of the children had to go to the mother’s home to get something and found the sorted Go Wish card deck and detailed notes the mother had written about her top ten wishes. It was clear what their mother wanted, and the children were relieved to be able to follow her wishes, clearly documented, rather than having to argue with each other about what they each thought their mother might want.”

We feel very lucky that our paths crossed with the amazing people at the Coda Alliance. Having seen what we had done with Teaching Economics As If People Mattered, CIVIO, MicahsCall.org, Tikkun/NSP, and other online projects, the Coda Alliiance asked us if we could help create an online version of Go Wish. We feel that having your desires known and followed, especially when you can not speak for yourself, is a key social justice issue.

Go Wish helps you figure out what’s most important to you and allows you to have discussions about your wishes with people who may someday have to speak for you. If you are a caregiver, or may find yourself in that position, Go Wish is also a very good way for you to learn, ahead of time, what the person you may be caring for wishes. We’ve found the cards incredibly helpful in our own lives as we work with our own aging parents, and when we have shared them with others they have had significant impact.

We’re grateful to have the Coda Alliance as one of our 10/10 partners, helping to make the Go Wish card decks more easily available across the country.

Your Order Includes: You get 2 decks (two different colors) for $22.00 (which includes shipping within the United States – for international orders, please select “International Shipping” from the pull-down menu and we will add $10 to cover the additional postage).

Bulk Orders: Card packs may also be purchased in bulk in quantities up to 64 packs total. Use the pull-down menu to select bulk order quantities. Prices include shipping and handling.

If you’d like to order larger quantities, please call us at 1-888-PEACE-40.

Order Directly from the Coda Alliance:
You can also order decks directly from the Coda Alliance. They have special pricing for very large bulk orders.
https://www.reachandteach.com/store/index.php?l=product_detail&p=557

Have a kind and respectful day.

When there is no good answer – Turning a difficult decision into a better quality of life

Every day, caregivers are faced with painful choices. The other day, a man shared with me that he had promised his mom that he would never put her in a nursing home. But now she needed more care than he could provide. Just this week, she had started a fire in the kitchen. He didn’t want to break his promise but he couldn’t protect her from herself.

This type of situation can be so painful. We want to do the right thing, but sometimes it becomes impossible. I explained to him that even though he had made a promise, he couldn’t stand by and let his mom be in harm’s way. He hadn’t known what the future would hold when he made that promise. I explained to him that as caregivers, we have a responsibility to step in and to make sure the person is safe.

I encouraged him to do what he could to keep her at home. Perhaps he could hire more help or make the house safer. But if those options didn’t work, he had to forgive himself and do the right thing to find a good care facility. This doesn’t mean he won’t feel badly about going back on his word. This is the hard road of caregiving.

Choosing the Least Worst Option

What often helps caregivers making the tough decisions is to realize that sometimes we have to pick the “least worst option.” What does this mean? It means we don’t always get a “good answer” or a “good choice” when making a decision. The only choice may be to pick the least terrible option, because that is the best option available.

Of course, caregivers should work hard to determine if there are any better options available, asking other people for help as they research their choices. But if the only option is one that is less than optimal, we will need to make peace with the situation by doing our best to make a bad situation a little better.

Creating a Better Quality of Life

When the “best” choice isn’t available, we can still make the decision better. As you evaluate the options, think about how your decision will be experienced by the person in your care. What will it feel like to move to a new place? What will it be like to go through a medical test or procedure? How will the decision be perceived through the mind of someone with Alzheimer’s or dementia?

For the gentleman who now needs to place his mom in a memory care unit, he will need to look at the places that are available, to consider what his mom can afford and to make sure the place will meet his mom’s needs. He will also have to look at how he can make the transition easier on his mom. What can he do to make her feel safer when she moves there? How can he bring joy and comfort to her when he visits? What can he do to improve the quality of her life, even though this is not the kind of life she would have wanted? Even though his mom would never have wanted to move out of her home, her son can make each day a little better for her. This is called person-centered care—when we think about how our choices will be experienced by the individual in our care.

Have a kind and respectful day.

Dale Carter – Speaking / Book Tour to Benefit You & Your Aging Parent in Georgia and Florida

Dale Carter – Speaking / Book Tour to Benefit You & Your Aging Parent in Georgia and Florida

Thank you to Benton House and Arden Courts senior living communities for hosting Dale Carter’s presentations and book signings in Atlanta and Florida, January 25th through February 3rd.

If you are in the following areas and have an aging parent, I encourage you to attend! Dale will be highlighting key parts of her book, “Transitioning Your Aging Parent: A 5 Step Guide Through Crisis & Change.”

Learn how to:
• Make the right decision in time of crisis
• Balance the needs of your parent and yourself
• Build your support network

You’ll walk away with strategies, tips and resources that are relevant to your situation and your family.
The seminars are free of charge. However, tickets are required due to the expected demand. To secure your tickets contact the community of interest below.

Georgia
• Tuesday, January 25th, 6 p.m. Benton House-Sugar Hill 770-904-0099
• Wednesday, January 26th, 6 p.m. Benton House-Johns Creek (at Ocee Library) 770-754-5446
• Thursday, January 27th, 6 p.m. Benton House-Douglasville 770-942-9449
Florida
• Tuesday, February 1st, 10:30am. Arden Courts, Largo 727-559-8411 (or email largo@arden-courts.com)
• Wednesday, February 2nd, 6 p.m. Benton Village-Palm Coast 386-445-3500
• Thursday, February 3rd, 6 p.m. Benton House-Titusville 321-383-2112

Have a kind and respectful day.

Caregiving for Seniors 2011 Conference on Saturday, January 22, 2011 @ Melbourne Hilton Rialto – 8:30 a.m. – 3:30 p.m.

Caregiving for Seniors 2011 Conference on Saturday, January 22, 2011 @ Melbourne Hilton Rialto – 8:30 a.m. – 3:30 p.m.

Thanks to the many generous community sponsors of this event,
there is no charge to Family Caregivers!

Conference Keynote:
Teena Cahill, Psy.D – Nationally acclaimed Speaker, Humorist, Author and TV and Radio Show Host will present “Nurturing the Nurturers.” Her audiences are inspired, motivated, and armed with ideas for managing stress without distress, and enhancing innate resilience to bounce back from adversity.
• Empowering Caregivers to Make Difficult Choices, Viki Kind, MA author of The Caregiver’s Path to Compassionate Decision Making ~ Making Choices For Those Who Can’t
• Caregiver Essentials – our panel of experts representing the Medical, Legal and Social Work Professions will field your questions
• Following your complimentary lunch, enjoy dessert with Dr. Rosemary Laird, Medical Director, Health First Aging Institute, author of “Take Your Oxygen First”
• Valuable Community Resources and Connections to Other Caregivers

Have a kind and respectful day.

The Wellness Community/Cancer Support Community will be hosting a lecture by Viki Kind “Empowering Caregivers to Make the Best Decisions” on January 18, 2011, 7-8:30PM

The Wellness Community/Cancer Support Community will be hosting a lecture by Viki Kind “Empowering Caregivers to Make the Best Decisions” on January 18, 2011, 7-8:30PM

Cancer Support Community Greater Miami
8609 South Dixie Hwy
Miami, FL 33143
305/668-5900
Fax: 305/668-0048
info@cancersupportcommunitymiami.org
http://www.thewellnesscommunity.org/

If you, or a loved one, are living with cancer, you are not alone. Three out of four families are affected by cancer. It’s a difficult time. Dealing with treatment and its side effects can be a struggle for both patients and families. Juggling family, professional and financial responsibilities can be overwhelming. Coping with the emotional burden can be exhausting.

Too often the practical and medical issues push the psychological issues aside. Patients often keep their deepest fears and worries to themselves, reluctant to share thoughts of hopelessness with family members who are supporting and caring for them. Family members will keep some of their deepest emotions to themselves as well, protecting the patient from feelings of anxiety, despair, and even anger.

There is good news: the Cancer Support Community can help. And it’s FREE.

It’s a place where both patients and family members will find support, education and hope. Support groups address emotional issues for patients and families. Educational workshops get important questions answered in a non-clinical setting. Stress management programs enhance health and well being. Every program is offered free of charge. All are lead by professionals licensed in their fields of expertise.

The comfortable, homelike environment at the Cancer Support Community makes sharing and mutual support easy.

We do not offer medical treatments, alternative treatments, or hospice care. Our services are offered as a compliment to conventional treatment, although anyone undergoing any kind of care is welcome. People come at diagnosis, during or at the end of treatment, at recurrence or several years out of treatment. They all come to learn they are not alone in their fight–whether for physical, emotional or spiritual recovery. Together, they regain a sense of control over their lives and ultimately discover that hope is a valuable tool irrespective of the stage of disease.
Our Mission
To ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community.
“My group is one place where I can be totally honest and feel and express my emotions. I leave feeling cleansed and inspired, hope fresh again.” – Participant, the Cancer Support Wellness Community.

Our Philosophy
“Cancer patients who participate in their fight for recovery, along with their healthcare team, will improve the quality of their lives and may enhance the possibility of their recovery.”
-Harold H. Benjamin, Ph.D.
Founder, The Wellness Community (now known as Cancer Support Community)

Our Beliefs Include:
• Many, many people recover from cancer.
• Cancer patients can benefit from sharing experiences and support with others, and need not be alone.
• Cancer patients can participate in their recovery along with their healthcare team.
• Family members and friends of an individual with cancer, including children, can also benefit from information and support.
There is Hope.
The Cancer Support Community Greater Miami (formerly known as The Wellness Community-Greater Miami) is part of a national organization that has been providing services to adult cancer patients and their loved ones for over 28 years. The first Wellness Community opened in Santa Monica California in 1982. In July 2009, The Wellness Community-National and Gilda’s Club Worldwide joined forces to become the Cancer Support Community.

Today, the Cancer Support Community provides the highest quality emotional and social support through a network of nearly 50 local affiliates, more than 100 satellite locations and online. To find a community-based center in your area, visit www.cancersupportcommunity.org.

Improving Outcomes for the Non-Compliant Patient/Resident/Person

When you find yourself in a conflict with the patient, one of the best techniques you can use is to separate the person from the problem. How do we do this? In these situations, it becomes a conflict between “my way” and “your way”. And we just keep battling until either one of us wins or we both get more frustrated. This doesn’t do the patient any good and it wastes our time. Let me give you an example. The patient comes in and hasn’t been taking their medication. Usually we would say, “Why haven’t you been taking your medication?” And what we really mean is, “Why are you being a problem?” This approach rarely works.

So, instead you might want to say to the patient, “How are you and I going to solve the problem of the medicine getting into you?” The problem becomes the third person in the room. You have separated the person from the problem. Now the person isn’t the problem, the problem is the problem. This takes the pressure off the situation and the two of you can begin to brainstorm to figure out a workable solution.

One quick note before you start brainstorming, make sure you understand what is the real issue. Are they not taking their medicine is because they can’t afford them? Are they not taking their medicine because they don’t like the way it makes them feel? Or are they not able to cut the pill in half or open the medicine bottle? These are just a few examples of the many reasons people might not be taking their medications. Figure out what the real issue is and you’ll be able to solve the problem together.

Have a kind and respectful day.

Improving the Medical Experience of the Person struggling with Alzheimer’s or other memory loss

When a person with Alzheimer’s or dementia is going to have a medical test or procedure, how can we help the person to feel less frightened and to minimize any suffering? If the patient is struggling to understand what will be happening to them, do a practice run-through and show the person the room where the test will happen. Or find a book with pictures that will help him understand what you are talking about. If the person with diminished capacity is afraid of being alone, you may want to introduce him to the nurses who will be working that day. For my dad, we tape-recorded the doctor’s explanations so he could listen to the information over and over again until he felt more comfortable.

Another thing to keep in mind is that the patient may be experiencing symptoms that affect his or her participation. These symptoms could be pain, side effects of medications, loss of hearing or sight, lack of sleep, an undiagnosed illness and grief, to name a few. Find out what can be done to relieve these symptoms to make it easier for the individual to participate in the process. Ultimately, our goal is to think about the quality-of-life questions from the person’s perspective as he or she will experience the consequences of our decisions.

Have a kind and respectful day.

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