Check out this 12-question quiz about whether you are suffering from caregiver burnout:
Are You Heading for Caregiver Burnout?
Our quiz can help you find out.
By Paula Spencer Scott
Last updated: May 12, 2017
Check out this 12-question quiz about whether you are suffering from caregiver burnout:
Are You Heading for Caregiver Burnout?
Our quiz can help you find out.
By Paula Spencer Scott
Last updated: May 12, 2017
Autonomic dysfunction in multiple system atrophy (MSA) includes orthostatic hypotension, urinary dysfunction, constipation, erectile dysfunction, thermoregulation (sweating and temperature intolerance), pupil function, respiration, etc. This email focuses on sweating in MSA.
Mayo Rochester has published a major paper on anhidrosis (lack of sweating) in 232 cases of multiple system atrophy (MSA). Quite a few of our local MSA support group members have been seen at Mayo Rochester, and a few were seen during the time period of the study — between 2005 and 2010.
Thirty-four of the 232 patients eventually had autopsy-proven MSA. We aren’t told if any of the 34 brain donation cases had something other than MSA, so I think we can assume not. Interestingly, some of the 34 with autopsy-proven MSA had close to normal sweat function.
Brain Support Network has helped quite a few MSA families donate a loved ones brain to Mayo Rochester but I’m not sure there were any during that five-year time period of the study.
I’m unclear why it takes Mayo Rochester seven years to publish data from 2005 to 2010. At that rate, progress is mud-slow.
I’ve copied the abstract of the anhidrosis paper below. The full paper is available at no charge online at the Movement Disorders Journal website:
(The paper does have some cool images of anhidrosis patterns in MSA.)
The researchers drew these three conclusions:
“(1) sudomotor dysfunction is almost invariably present in MSA and even more common and severe in MSA-parkinsonism than MSA-cerebellar;
(2) a preganglionic pattern of sweat loss is common in MSA; however, pre- and postganglionic abnormalities may coexist; and
(3) the increasing frequency of postganglionic sudomotor dysfunction over time suggests involvement of postganglionic fibers or sweat glands later in the disease course.”
Here are some definitions just to understand these conclusions —
* sudomotor: describes anything that stimulates the sweat glands
* preganglionic: something that originates in the brainstem or the spinal cord
* postganglionic: something that runs from the ganglion elsewhere; exists outside the central nervous system
These MSA patients at Mayo Rochester were given two tests to determine if the problem (lesion) was in the preganglionic or postganglionic part of the autonomic nervous system:
* thermoregulatory sweat testing (TST), a test of autonomic function, and
* quantitative sudomotor axon reflex testing [QSART], a test of postganglionic sudomotor function
The researchers said: “[An] area of absent sweating on TST in an area with a normal QSART response would indicate a preganglionic lesion. Conversely, a reduced or absent QSART indicates a postganglionic lesion.”
Why was this study done? The researchers said: “Although hypo- or anhidrosis in MSA is well recognized, the degree, pattern, lesion site, and temporal evolution of sudomotor dysfunction in MSA has not been systematically evaluated in a large patient cohort.”
An accompanying editorial in the March 2017 Movement Disorders Journal is titled the “many faces of autonomic failure in multiple system atrophy” (MSA). According to the editorialists, in the anhidrosis study, researchers “show abnormal thermoregulatory sweat testing in 95% of all assessed MSA patients. Remarkably, only 16% of MSA patients complained about sweating symptoms.”
The short editorial looks briefly at other techniques to assess sweat dysfunction. See:
OK, I think that’s enough for most of us….
Anhidrosis in multiple system atrophy involves pre- and postganglionic sudomotor dysfunction
Elizabeth A. Coon MD, Robert D. Fealey MD, David M. Sletten, Jay N. Mandrekar PhD, Eduardo E. Benarroch MD, Paola Sandroni MD, PhD, Phillip A. Low MD, Wolfgang Singer MD
Movement Disorders Journal, Vol 32, Issue 3, March 2017, pages 397-404
First published online: 10 November 2016
The objective of this study was to characterize the degree, pattern, lesion site, and temporal evolution of sudomotor dysfunction in multiple system atrophy (MSA) and to evaluate differences by parkinsonian (MSA-parkinsonism) and cerebellar (MSA-cerebellar) subtypes.
All cases of MSA evaluated at Mayo Clinic Rochester between 2005 and 2010 with postganglionic sudomotor testing and thermoregulatory sweat test were reviewed. Pattern and lesion site (preganglionic, postganglionic, or mixed) were determined based on thermoregulatory sweat test and postganglionic sudomotor testing.
The majority of the 232 patients were MSA-parkinsonism (145, 63%). Initial postganglionic sudomotor testing was abnormal in 59%, whereas thermoregulatory sweat test was abnormal in 95% of all patients. MSA-parkinsonism patients were more likely to have an abnormal thermoregulatory sweat test compared with MSA-cerebellar (98% versus 90%, P = 0.006) and had a higher mean percentage of anhidrosis (57%) compared with MSA-cerebellar (48%; P = 0.033). Common anhidrosis patterns were regional (38%) and global (35%). The site of the lesion was preganglionic in 47% and mixed (preganglionic and postganglionic) in 41%. The increase in anhidrosis per year was 6.2% based on 70 repeat thermoregulatory sweat tests performed on 29 patients. The frequency of postganglionic sudomotor abnormalities increased over time.
Our findings suggest: (1) sudomotor dysfunction is almost invariably present in MSA and even more common and severe in MSA-parkinsonism than MSA-cerebellar; (2) a preganglionic pattern of sweat loss is common in MSA; however, pre- and postganglionic abnormalities may coexist; and (3) the increasing frequency of postganglionic sudomotor dysfunction over time suggests involvement of postganglionic fibers or sweat glands later in the disease course.
© 2016 International Parkinson and Movement Disorder Society
This recent article in the New York Times by Dr. Dhruv Khullar argues in favor of (a) palliative care that is driven by patient need, not disease prognosis, and (b) earlier conversations about patients’ goals at the end of life.
Dr. Khullar makes the point that: “Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days.”
Some data shared in the article include:
* “On average, patients make 29 visits to the doctor’s office in their last six months.”
* “In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.”
* “Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.”
Here are a few more excerpts:
* “Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.”
* There is a push underway “to separate palliative care from end-of-life care. Many argue that palliative care…should be considered at any stage of a serious illness — not just at the end. Its use should be driven by patient need, not disease prognosis. … The vast majority of patients say they would want palliative care for themselves and their family members if understood as an ‘extra layer of support’ during serious illness.”
* “But physicians still tend to conflate palliative care with hospice care, and many don’t feel comfortable engaging in these delicate discussions.”
Here’s a link to the full article:
We’re Bad at Death. Can We Talk?
May 10, 2017
The New York Times
A course called “Powerful Tools for Caregivers” was developed by an organization in Portland. You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org
As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.” Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, chapter by chapter. If you’d like far more detail that Denise’s summaries allow as well as access to the book’s terrific worksheets, note that the book is available for purchase in both English and Spanish at powerfultoolsforcaregivers.org
The title of chapter seven is “Making Tough Caregiving Decisions.” This chapter discusses preparation for decisions regarding care, a model for decision-making regarding care, conducting a family meeting, and planning ahead. Three “tough circumstances” are explored: when the care receiver covers up needs; when you receive mixed messages; and when the care receiver is memory-impaired.
Here’s Denise’s report on chapter seven.
Notes by Denise
The Caregiver Helpbook
Chapter Seven – Making Tough Caregiving Decisions
Before making a decision, it is important to:
* Understand your motives, attitudes, and feelings. These influence your ability to be an objective, effective decision maker. Ask yourself if you are open to discussing concerns or do you just want your caree to do what you want. How would you describe your attitude about the situation. Are you being objective? How do your feelings fit into the decision? Are your feelings distorting or exaggerating the problem? Talk to someone you trust to gain perspective if you are unsure about your feelings or believe you are exaggerating the problem.
* Learn from past experiences and those of others. Consult other family caregivers, friends, or support group members who have made similar decisions to learn from their mistakes. Consider the timing of making a decision involving change. What would you do differently from a prior decision or an acquaintance’s similar decision? What helped you make a prior decision that worked well and could be applied to your current decision? Ask others what they would do differently next time? What professional help they found useful? Ask the care receiver what they want to do.
* Understand the care receiver’s needs and feelings. If you cannot communicate with them directly, get information from their health care provider, family members, and friends. Even neighbors and local business and delivery people they utilize can provide information about their preferences. Identify areas where help is needed (driving, meal prep., housekeeping, personal care, finances, home maintenance, etc.). Identify what the care receiver still does independently, or with some difficulty to anticipate what help may be needed soon. Determine if the care receiver’s needs are temporary or permanent, and if help is needed occasionally or continuously. You can get a professional evaluation from a care manager, nurse, or social worker. Their evaluation will give you confidence in any decisions that need making for the best care.
* Involve the care receiver in decisions whenever possible. “The goal is to help the care receiver meet his needs so he can live the life of his choosing… No adult wants decisions made for him/her, no matter how wise those decisions may be. Talk with the care receiver about his/her desires and priorities. When he/she sees his/her ideas or wishes incorporated into the decision, he/she has a vested interest in making the decision work.” This “does not mean decisions are left totally up to him/her. …You can set limits… Then within those limits the care receiver can make the decision.” There is a long list of questions to ask when faced with a decision on page 137.
* Investigate potential options. “Try not to have preconceived ideas about what is ‘best.’ It’s important to identify all potential options and the benefits and limitations of each – from both your perspective and that of the care receiver. If possible, the care receiver should have at least two options from which to choose. Having some choice often helps to give a sense of control and reduce resistance.”
* Recognize the care receiver’s right to take risks. “Mentally competent adults have the right to make choices regardless of age, as long as they are not putting others at risk. You cannot force change or overrule the decisions of a person who is not mentally incapacitated. However, that person…is also responsible for accepting the consequences of his/her choices.” So, talk with them about the potential consequences of the choices you feel may be unwise. They may be assuming you will provide care should an accident occur, or that an accident wouldn’t affect their living situation. Facing reality might make them reconsider their choices. If not, and an accident does happen, the decision was the care receivers, not yours.
A Model for Making Decisions
Strong emotions can arise in making decisions, especially when family members (including the person you are concerned about) have differing views of the situation, the options, priorities, and philosophical differences.
It’s helpful to have a plan to follow. The figure on page 139 illustrates this 7-step model for approaching a decision.
1. Identify the Problem. You need to agree on what the problem is before exploring options or trying to reach a decision. It may help to answer these questions:
* How does the problem present itself? What has been observed?
* Why is there a problem?
* What makes it a problem?
* Who is affected?
* What is the current situation? How widespread is the problem?
* What are the consequences if a decision is not reached about the problem?
It is important to move from generalizations to specifics. Then, the problem doesn’t seem too large or too vague to tackle. Generalization example: Dad is a poor driver. Specific example: He was cited for running a red light. He straddles the center line. Three neighbors have complained.
2. Gather information. This provides a stronger base for decision making. Get objective information about the person’s health and level of functioning from all relevant sources, Including the community and family about their health and financial situation.
3. Generate Options. Brainstorm. This is thinking of as many ideas as you can, without criticism or judgement, to address the problem. This increases the likelihood of selecting the best option. Health care and social service professionals can help identify options. Be sure to keep this step separate from Evaluating Options so as not to censor ideas as they are presented.
4. Evaluate Options. “With most decisions there is no one ‘right’ or ‘perfect’ course of action. … Any decision you make is likely to have both positive and negative consequences.” Evaluate these positive and negative consequences to determine the best outcome for your family. Ask yourself:
* What are the potential benefits of this option for my family member? For myself?
* How likely is it that these benefits will occur?
* What are the limitations or disadvantages of each option for the care receiver? For myself?
Consider both short and long-term consequences. An option should not unfairly burden anyone, so it is critical everyone is honest about what they can and cannot do.
Agreeing on standards for evaluating the options – criteria such as financial limits and personal preferences – can also help you select the best options(s). You might find combining two or more options results in the best decision.
It may be helpful to prioritize the options and to develop a back-up plan if your first choice doesn’t work well.
Writing identified options on a chart like the one on page 142 helps organize ideas. It essentially recommends writing down each option and making a pros & cons list for each one. It gives a visual model of how you reached your decision. It also helps all the choices from becoming overwhelming.
5. Create a Plan. You may feel you are choosing the ‘least worst’ option, but if your choice meets the care receiver’s needs and you tried to preserve the greatest control and freedom for him/her, consider that it is the best decision for now.
Develop a step-by-step plan for implementing the plan. Put it in writing and indicate who has agreed to do which task to reduce disagreements. The plan can be useful later when you evaluate the outcome.
6. Act on the Plan. Establish a trial period of _____ weeks/months, then look at the plan again.
7. Reassess the Plan. Situations change, so flexibility is the key to quality decision making. Although reassessing can be hard to do if you want closure, don’t be tempted to skip this step. Making necessary adjustments is decision making at its best. Be prepared to go back through the whole process.
Holding a Family Meeting
“A family meeting is one tool for deciding how to share caregiving responsibilities and for making caregiving decisions. It gives everyone an opportunity to discuss concerns, identify current or potential problems and solutions, and negotiate the sharing of caregiving tasks. It can also reduce misunderstandings and clarify each person’s expectations. The following guidelines can help insure the effectiveness of a family meeting.”
Include Everyone. Siblings, spouses, other relatives, housemates, the person for whom plans are being made, close friends, and neighbors. Don’t exclude anyone because of distance, means, or an argumentative nature, etc. This ensures greater support and helps prevent undermining of decisions.
Consider a Two-Step Meeting. The first meeting is held without the care receiver to freely air concerns, discuss responsibilities, etc. The second meeting is held with the care receiver, who is then actively involved in looking at options and making decisions.
Plan for Success. A family meeting is most successful when you do the following:
* Beforehand, ask family members to list their concerns and the tasks they are willing to do.
* Hold the meeting in a neutral setting.
* Create a feeling of trust, support, and confidentiality.
* Keep the meeting focused on the current concern rather than other issues of past conflicts.
* Ensure everyone has an opportunity to express feelings, voice preferences, and offer suggestions without being put down.
* Focus on the positive. Identify what each person can do, but encourage everyone to be honest about their limitations.
* Prepare a written plan, listing what each person will do and when they will do it. Keep it flexible. Stuff happens.
Use a Facilitator. A family meeting is not easy, especially if members have never discussed feelings or family issues, or if conflicts already exist. If these are likely to prevent rational discussion, seek professional guidance. A counselor, health or social service professional, private care manager, or member of the clergy trained in family counseling may be able to facilitate and provide objectivity.
Making Decisions Under Tough Circumstances
“Special circumstances or difficult relationships may hamper decision making. Sometimes people hide problems, send mixed messages about what they want or will do, or cannot participate in decision making.”
When the Care Receiver Covers Up Needs. It may be because “they fear they will be forced to move or accept in-home help. If involving them in the decision and reassuring them of your intentions doesn’t help…try these steps.”
* Talk to others in the family. Ask what they have observed.
* Ask friends and neighbors if they have concerns. You may be surprised how much they do for your family member. Engaging them in the process further strengthens their support system.
* Talk to local business people (grocers, druggists, fast food employees) and those who provide services like mail delivery and garbage pickup. Let them know you value their watchfulness. Give them your contact information if see a problem.
* Write down your findings. With permission, include names and phone numbers of those looking out for your care receiver.
* Seek professional advice. Ask the care receiver’s healthcare provider for information about professionals who can evaluate the care receiver’s functioning and needs.
When You Receive Mixed Messages. “Often mixed messages indicate that the care receiver is thinking about the impact of a decision. Try sharing your observation of the mixed messages and talking with him/her about what they represent. Listen carefully. This allows him/her to express feelings and may reassure him/her that you are sensitive to his/her position, uncertainty and feelings.”
When the Care Receiver is Memory Impaired. Consider the preferences of the person over time and incorporate those into your decision making. Gather the advice of relatives and the care receiver’s physician. You can then feel confident your decision is based on the best information available.
Plan Ahead If You Can
Consider planning ahead to be a decision making tool. It’s not always easy, but it helps reduce heartache, increases understanding about a person’s wishes, makes decisions easier in difficult times, and reduces uncertainty and disagreements.
Enlist the participation of the care recipient to maximize their control over their lives while they are well enough to participate in discussions about declining health and long-term care, living arrangements, financial and legal issues, end-of-life decisions, and death and funeral arrangements.
“One approach is to talk with the care recipient about ‘what ifs.’ For example, ‘What if the doctor said I could no longer provide the level of care you need?’”
“Look for natural opportunities to talk. For example, when the care receiver says, ‘When I die…’ or ‘When I can no longer…’ be receptive to a discussion” around the topic being raised, rather than dismissing it as depressing. “Other natural times for talking may be when a family member or friend experiences a health crisis, has an accident, or when you are preparing your own” end-of-life documents.
“When making advance plans, it is important to explore options and to have more than one plan. Circumstances later on may require flexibility.”
Some local Bay Area organizations hosted a “Caregivers Count” conference in Campbell last Saturday. One of the speakers was Vicki Schmall, PhD, author of “The Caregiver Helpbook.” The topics for her keynote were self-care and effective communication techniques for caregivers. Most interesting were these items related to self-care: metaphors for self-care; taking breaks from caregiving; care management; guilt vs. regret; and focusing on what you’ve done well as a caregiver.
Many of you will recognize this book title – “The Caregiver Helpbook.” The book is available from Powerful Tools for Caregivers (powerfultoolsforcaregivers.or
Denise attended the conference. Most of Ms. Schmall’s talk was the same information as was in the Helpbook so that information isn’t repeated below. However, Denise has shared a few highlights focusing on self-care from Ms. Schmall’s talk.
7th Annual Caregivers Count Conference
May 6, 2017
Denise’s Highlights from
Topic: Self care and effective communication techniques
Speaker: Vicki Schmall, PhD, author of The Caregiver Helpbook
She used a couple metaphors for self care that I found helpful — a path and a balance scale.
1. Ask yourself which path are you on, the path to self care or not? It’s a choice.
2. She also put up a slide of a simple balance scale with the carer on one side, and the caree on the other. Balance takes effort. In some cases, you can image a scale balancing 3 (or more) weights, for those situations involving a carer, caree, and other family members or obligations (like employment).
I love that she said taking breaks from caregiving was to prevent – not treat – exhaustion. What you do on your break needs to be something that recharges and refreshes you, not chores or errands, and preferably something including social interaction. Social interaction is hard to regain once connections to social circles are lost. Social isolation is as detrimental to health as smoking and obesity.
It is sometimes easier to seek help if you think of yourself as a ‘care manager.’ Your job is to bring family, friends, and professionals together. Respect the views, abilities, and limitations of non-professionals. Give them choices for how they can help and try to tailor a person’s skills to tasks that need doing. Many carers find it helpful to keep a list of tasks on the refrigerator and show it to anyone who asks how they can help. Let them choose what they feel they have time, energy, and skills for.
Dr. Schmall explained that her brother couldn’t bear to have a conversation with their mother after her dementia got to a certain point, but he was excellent at dealing with the care facility’s administration, paying their mother’s bills and doing their parents’ taxes.
Know the distinction between guilt and regret. Ask yourself, “Did I do something wrong or hurtful?” or “Do I wish I had done something differently?”
* If the answer is yes to the first, you should be feeling guilt.
* If the answer is yes to the second, you are probably feeling regret. It is often combined with grief over a loss or change.
Be open to your caree’s changing situation. Look ahead at the disease process and at what his/her needs will be. Plan ahead to meet those needs and to avoid feelings of guilt, and regret, because good decisions are never made during a crisis.
Focus on what you have done well. Don’t focus on what didn’t work out, “I should have…,” or “Why didn’t I…?” Your self-talk creates your reality. Negative self-talk is defeating. Positive self talk is affirming. Good enough is the new perfect.