“Women’s Friendships, in Sickness and in Health” (NYT)

Though the title of this article suggests the content is limited to “women’s friendships,” I think it’s about all friendships.

The first sentence of this article says exactly what it’s about — “A silver lining in the dark cloud of serious illness — your own or a loved one’s — is the help and caring offered by friends, and the way that help can deepen friendships.”

The article also addresses losing some friends through an illness. The example given is a woman lost her friends at the time her husband was coping with Parkinson’s.  The woman wondered:  “If a friend isn’t there when you need her, what is a friend?”

Here’s a link to the article:


Women’s Friendships, in Sickness and in Health
By Deborah Tannen
New York Times
April 25, 2017

Food for thought….

“Mastering Caregiving Transitions” – chapter 6 of “Caregiver Helpbook”

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.”  The book is available for purchase ($30) in both English and Spanish at powerfultoolsforcaregivers.org.  It contains terrific information and worksheets.

The title of chapter six is “Mastering Caregiving Transitions.” Here are a few excerpts from chapter six:

* “Change is the external situation. … Transition is the internal emotional process we go through to come to terms with what has changed.  It’s these feelings that can be particularly difficult.”

* “Change involves not just the beginning of something, but also an ending of what was.”

* “Caregiving changes and decisions are difficult, in part, because they usually lead to some type of loss for the care receiver.  And, sometimes for…the caregiver.   [They] frequently create powerful feelings of self-doubt and guilt.”

* “Chronic, progressive illness that causes a gradual decline in abilities forces both you and the care receiver to … deal with a succession of changes and losses.  [These] losses multiply without the benefit of a ‘wilderness time’ to grieve and come to terms with them.”

Tools to counteract negative thinking are discussed in this chapter.

“Respite Care: Finding and Choosing Respite Services”

This is a comprehensive article from HelpGuide.org about all aspects of respite care — types of respite care (including in-home care provided by family and friends and out-of-home care), getting your family involved in respite care, selecting care (including questions to ask), paying for care, and strategies for successful respite.




Respite Care:  Finding and Choosing Respite Services
By Melissa Wayne, MA, and Monika White, PhD
April 2017

For many, the challenges of caring for an elderly, chronically ill, or disabled family member are simply a part of daily life. Caregiving, though, is a demanding job and no one is equipped to do it alone. Respite care provides short-term breaks that can relieve stress, restore energy, and promote balance in your life. Even if working with family members is difficult, there are many other respite care options available to support you and your loved one.


Seeking support and maintaining your own health are key to managing your role as a caregiver. Using respite care before you become exhausted, isolated, or overwhelmed is ideal, but just anticipating regular relief can become a lifesaver.

Respite care can take many forms, but boils down to two basic ideas: sharing the responsibility for caregiving and getting support for yourself. Finding the right balance requires persistence, patience, and preparation.

Planning your relief
Planning starts with analyzing the needs of both you and your loved one. Assessing your needs for the type, skills, frequency, and location of respite services is critical to ensure you receive appropriate respite. As a caregiver, is support what you need most? Or is it some regular free time? Or maybe help with transportation? Keep track of your daily activities and then make a list of the areas and times when you most need help.

Identifying your loved one’s requirements, abilities, and preferences will also help you find the right match. Are social activities primary? Do they require assistance with walking, eating or medications? Do they need mental stimulation? Or exercise? Answering these questions will help you determine which respite options to pursue.


In-home respite care services
In-home respite can be provided by volunteer or paid help, occasionally or on a regular basis. Services may last from a few hours to overnight, and may be arranged directly or through an agency. This popular respite choice enables the patient to remain in his or her own home, and can be invaluable for caregivers. Consider which of these options might meet your needs:

Stimulation, recreation, and companionship can be provided by family members, friends, or neighbors while you take a break. Faith-based, community, and other non-profit organizations recruit volunteers, while home-care businesses provide trained staff to cover short in-home intervals.

Personal care providers assist with daily living skills such as bathing, dressing, feeding, or toileting. Homemaker services support meal preparation, shopping, and housekeeping. Skilled health care, which requires more specialized training and experience, addresses medical needs.

Out-of-home respite care services
As our aging population grows, this range of private and non-profit respite programs continues to expand:

Adult day centers are designed for older adults who can no longer manage independently, or who are isolated and lonely. Planned activities promote well-being though social and health services. Adult day care centers operate during daytime hours, Monday through Friday, in a safe, supportive, and cheerful environment. Nutritious meals and afternoon snacks that accommodate special diets are typically included.

Residential programs offer temporary care for varying lengths of time. Group homes, hospitals, nursing homes, and other specialized facilities provide emergency and planned overnight services, allowing caretakers 24-hour relief. Although medical insurance in the U.S. generally does not cover overnight respite, long-term care policies and veterans’ programs may subsidize care (see Paying for respite care below).

Caregiver retreats and respite camps are available in some areas, combining respite with education and peer support.


Family members and friends may be able to help out while you run an errand, take a break, or even go on vacation. However, just as the burden of caregiving is often more than one person can handle, it can also be a tough process for families to share.

Even the healthiest families can be severely stressed by ongoing care, and the division of labor is frequently lopsided. You can encourage support and participation by:

* Talking openly and regularly. Keep everyone up to date on your loved one’s needs and condition. Family members who don’t share the day-to-day caretaking experience may not fully appreciate the situation.

* Encouraging family members to evaluate what they can reasonably and honestly do. Changing roles and varying resource levels can impact family involvement. Welcome different viewpoints, accept limitations, and be willing to try alternate strategies. Share your list of needs and take advantage of all offers to help.

* Recognizing your own feelings and discussing disproportionate tasks. Harboring resentment when you need more help can lead to your burnout and impaired health. Ask directly for concrete support and specific time commitments. Consider establishing an online calendar to organize relief and reconfirm schedules.

* Using technology to bridge distances. Try free video conferencing services to hold family meetings at times that work for everyone. Create a web-based community to share updates and explore options.

* Exploring a family respite cooperative. Consider trading respite services with other caregivers and their families. Pooling resources with others in the same situation can encourage greater involvement, reduce costs, and increase flexibility.

* Participating in support groups. Learning how other families cope can suggest new options and provide reassurance. When siblings are unable or unwilling to share the load, peer support can be invaluable.


When you devote so much love and energy to caregiving, it may be difficult to entrust your family member’s care to strangers. Whether you engage a provider directly or work through an agency, you can allay your fears by conducting some basic research.

Using independent providers
Although you are anxious for relief, taking time to find the right person is essential for your peace of mind and your loved one’s safety. Make sure you:

• Conduct an in-depth interview with each candidate. Screening applicants on the phone should always be followed with a personal interview.

• Be specific about all of the tasks, skills, and schedules involved.

• Discuss compensation and payment schedules. Do not pay for services in advance.

• Request several work and personal references, and check them carefully. Verify the information provided, and ask all references about reliability, trustworthiness, punctuality, and the care provider’s ability to handle stress.

• If possible, consider a background check. In the U.S., professional services cost between $100-$150 and can alert you to potentially serious problems. Check with your local police department, legal aid service, or attorney for referrals to reputable investigators.

Always include the potential care recipient in the screening process if he or she is able to participate, to ensure that both parties are comfortable and that your loved one’s needs are respected.

Working with agencies
Although independent providers are generally the least expensive, home care agencies and referral services are often easier to use. Use your planning lists to help these professionals better serve you.

An agency finds and places providers, handles payroll, and usually provides substitutes for sick or absent personnel. If problems occur, you also have specific avenues of recourse (complaints, mediation, or arbitration) that are not available when working with individuals.

Referral services work to match your needs with local program options. Use online registries, or check newspaper ads or the yellow pages to find specialists who know local programs and can help you navigate their systems.

Choosing off-site programs for respite care
When you have identified potential out-of-home programs, plan to visit at least three. Observe the staff and how they interact with care participants. Try to picture your loved one there, and check your instincts to see if you’re on the right track.

Be sure to ask the following questions:
• How are care providers screened?
• What is the training and level of experience of the care providers?
• Will care providers need additional training to meet specific family needs?
• How, and by whom, are the care providers supervised?
• What procedures does the program have for emergencies?
• Are families limited to a certain number of hours of services?
• Does the program provide transportation and meals?
• What is the cost of services? How is payment arranged?

If you can, spend a day at the center that seems best to you, so that you can get a “feel” for the people and environment. Be sure to bring a site checklist with you and ask plenty of questions. You may wish to return a few times to see whether your experience on different days confirms your initial impressions.


In today’s challenging economy, you may think respite services are unattainable. However, thinking creatively can uncover valuable resources:

• Ask local retirement groups for volunteers to sit with your loved one while you take a walk, watch a movie, run errands, or spend time out with friends.

• Trade services with other caregivers. When a loved one is able to change locations for an afternoon, alternate weeks caring for both recipients at once.

• Contact area high school counselors. College-bound students often need community service experience and are available afternoons and evenings.

Traditional funding sources for respite care in the U.S.
* Insurance: Although medical insurance generally does not include respite coverage unless licensed medical professionals are involved, long term care policies usually fund services up to specific time or dollar limits.

* SSI: Patients with disability coverage may be eligible for home health care benefits. Check your local Social Security office to verify eligibility.

* Medicaid: Medicaid does not fund respite directly, but some states use waivers to apply federal funds to offset respite costs for residents with specific conditions and disabilities. Consult your state’s Administration on Aging website.

* Veterans’ Benefits: The VA provides inpatient respite coverage for up to 30 days per year for qualified veterans. In addition, when war-time vets care for their spouses, funding for in-home services are available on a state-by-state basis.

* Foundation Grants: Private foundations, such as The Robert Wood Johnson Foundation and the Brookdale Foundation, make grants to organizations that provide direct respite. These funds are usually awarded annually and posted on foundation websites.

* Nonprofit and Disability Organizations: The United Way, the Alzheimer’s Association, and other disability-specific organizations may offer respite money in your area. Agency care specialists can assist you in researching these funds.

* State Agencies: Over half of all states allow family members to receive payment for providing respite care. Eligibility, delivery modes, and funding vary from state to state. To learn what is available in your area, check Home Care Agencies in the Resources section below.

While finding and implementing respite care sounds like a lot of work, relief and revitalization is not just important for you, it benefits all those involved in the caregiving process.

Remembering the benefits and following these six tips can ease the process:
* Plan and schedule frequent breaks. Respite is not just a service—it is an effect that can only come from regular relief.

* Use checklists to inform respite care providers about your care recipient’s schedules, likes and dislikes. Offer suggestions for handling any difficult behaviors.

* Make back-up plans. Always keep a list of alternate respite care providers and resources. Unplanned emergencies should not prevent you from taking care of yourself.

* Evaluate respite care providers often. Observe your care recipient before and after respite sessions. Ask for brief updates and more detailed reports regularly.

* Expect changes. Respite care is a process that often requires fine-tuning. Anticipating and accepting changes in personnel or programs can keep you from becoming discouraged.

* Attend your support group regularly. Structured and informal groups allow you to meet others in situations much like yours. You can talk, vent, laugh, and exchange tips with people who understand. If you can’t easily leave home, online communities, message boards, and forums can also provide much-needed support.


Tips and support for family caregivers
National Caregiver’s Library – A comprehensive reference source, including checklists, links to government resources, and products. www.caregiverslibrary.org

Respite Caregiver Checklist – Helps the temporary caregiver learn about the care of their recipient’s needs. www.agingcare.com/siteimages/RespiteCaregiverChecklist.pdf

Respite resources in the U.S.
Elder Care Services Search – A federal government site that includes a search-by-zip code directory of elder care services, planning resources, benefits planners, and links to state agencies. www.eldercare.gov

Respite Locator – Offers fact sheets and a national respite care directory.  archrespite.org/respitelocator

Respite Care – A comprehensive guide to understanding, locating, and using respite care. www.alz.org/care/alzheimers-dementia-caregiver-respite.asp

Online tools
Carepages.com – Keep your friends and family members up to date and involved by creaing a secure site dedicated to your loved one.

Lotsa Helping Hands – Organize respite schedules and manage activities using an interactive calendar. LotsaHelpingHands.com

“Grieving Before A Death: Understanding Anticipatory Grief”

I stumbled today across the “What’s Your Grief” website (whatsyourgrief.com).  They seem to be selling a few things (most are reasonably priced) but the focus seems to be on providing useful information.  I thought this article on anticipatory grief — grieving before a death — was worth sharing.

Though this is directed at caregivers, many people can experience anticipatory grief — not just caregivers.

The author of the blog post has a list of 11 things to remember when dealing with anticipatory grief:

1.  Accept that anticipatory grief is normal.
2.  Acknowledge your losses.
3.  Connect with others.
4.  Remember that anticipatory grief doesn’t mean you are giving up.
5.  Reflect on the remaining time.
6.  Communicate.
7.  Take care of yourself.
8.  Take advantage of your support system.
9.  Say yes to counseling!
10.  Relief is normal.
11.  Don’t assume.

One key way to “connect with others” is at our caregiver-only support group meetings for LBD, PSP, CBD, and MSA caregivers.  Let me know if you’d like to be added to the meeting reminder email list, if you aren’t already on it.

Check out the full article below.



Grieving Before A Death: Understanding Anticipatory Grief
What’s Your Grief?
about September 30, 2013

I spent a lot of time with my grandmother when I was growing up. When I was young, before I started school, my grandmother watched me while my parents worked.  I have many fond memories of walking the alleys by her house to the playground, helping her stuff grape leaves and roll cookies, playing the piano, painting our nails together, watching All My Children, and eating her delicious lentil soup.

But let me back up a bit.  Long long before that, when my mother was just a twinkle in her father’s eye, my grandparents emigrated to the United States from Greece.  They did what most good Greeks did: they opened a restaurant and they had children.  But life did what life does sometimes – it took my grandfather way too soon, leaving my grandmother a widow with two elementary-school aged children.  My grandmother ran the restaurant on her own, raising her two children in an apartment upstairs.  A vision of the American Dream, she sent her children off to college, one to the Ivy League, and one at the top of her class through college and pharmacy school.  In her retirement my grandmother moved to Baltimore.  She stayed busy as a church volunteer and as a babysitter to her grandchildren.  In her eighties she was still spending twelve hour days at the Greek Festival making loukoumades and selling pastries.

In her late eighties my grandmother had a stroke.  The years that followed brought dementia that slowly took away the fiercely independent woman we knew.  She was a version of my grandmother, a woman who was still kind, who still prayed, and who still loved having her nails painted.  But this version of my grandmother spoke less and less, came in and out of awareness, had to be reminded who we were, and could no longer care for herself.

When my grandmother died just shy of her 95th birthday in 2004 I am not sure I had ever heard the words ‘anticipatory grief’.  And yet I remember so well thinking that we had been saying goodbye over the past six years, as she had slowly slipped away.  Though she had still been with us in body, we had been slowly mourning the loss of her personality, her independence, her memory, and her awareness for years.  Remembering who she had been, it was like we had been watching her fade away.

Anticipatory Grief: the nitty gritty
Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives.  It can start as soon as we become aware that death is a likelihood.   Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve.

Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression.  These complicated emotions are often coupled with the exhaustion that comes with being a caregiver  or the stress of being left alone when someone goes to war or is battling addiction.  We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread.  More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses.  This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.

When we know a death is imminent our bodies are often in a state of hyper-alertness – we panic whenever the phone rings, an ambulance must be called, or when our loved one deteriorates.  This can become mentally and physically exhausting.  The same is true of watching a loved one suffer, which is almost always part of a prolonged illness.  Caring for them as they suffer takes an emotional toll on us.  These things (and others) can contribute to a sense of relief when the death eventually comes, and a guilt that can come with that relief.   These feelings are common and totally normal when someone has experienced an anticipated death.   And yet we feel guilty for this relief, thinking it diminishes our love for the person.   It doesn’t, of course, but this relief can be a confusing feeling.  We sometimes need to consciously remind ourselves that the relief does not change the deep love we had for the person, rather it is a natural reaction to the illness.

There have been numerous studies showing that anticipatory grief can reduce the symptoms of grief after a death but, as always with grief, there are no rules.  There will be times that anticipatory grief may reduce the intensity of grief following a loss, then there are many times that the grief following a death is not impacted at all.  For a great review of the research on anticipatory grief (and understanding of why much of the data conflicts), see this article by Reynolds and Botha.  What is important to keep in mind is that if you are grieving with less intensity or for shorter duration than other losses because of the  anticipatory grief you experienced before the death, that is totally normal! On the flip side, if you do not feel your grief is diminished despite it being an anticipated death, that is totally normal too!  Convenient, eh?  There is no formula for how an anticipated loss will impact us because we all grieve differently.

Things to Remember When Dealing with Anticipatory Grief
1.  Accept that anticipatory grief is normal.  You are normal and feeling grief before a death is normal.  You are allowed to feel this type of grief.   Seriously.  This is a common phenomenon that has been documented for nearly a century.  You are not alone!

2.  Acknowledge your losses.  People may say annoying things like, “at least your mom is still here” that minimize what you are experiencing.  Allow yourself to acknowledge that, though the person hasn’t died, you are grieving.  Consider journaling, art, photography, or other creative outlets to express the emotions around things like acceptance of the impending death, loss of hope, loss of the person you once knew, loss of the future you imagined, etc.  Explore mindfulness (we have a post on that here) as a way of being present and aware of the many emotions your are coping with.

3.  Connect with others.  Anticipatory grief is common among caregivers, but unfortunately when all your time is consumed with caregiving you may feel totally alone and isolated.  Seek out caregiver support groups, either in your area or online, so you can connect with others who understand the challenges you are facing, including anticipatory grief.  There is an online anticipatory grief forum that is active here if you are looking for online support.

4.  Remember that anticipatory grief doesn’t mean you are giving up.  As long as you are there for support, you are not giving up on a family member or friend.  There comes a time where we often accept that an illness is terminal and that recovery is no longer a possibility.  Though it is a reality, there can be a feeling of guilt that comes with that acceptance.  Focus on what you are doing – still supporting, caring, loving, creating meaningful time together, etc.  You are shifting your energy from hope for recovery to hope for meaningful, comfortable time together.

5.  Reflect on the remaining time.  Consider how you and your loved one will want to spend that time together.  Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful.  If your loved one is open to it, you may want to discuss practical matters, like advance directives and funeral arrangements to ensure that you are able to honor their wishes (rather than being stuck having to guess what they would have wanted).

6.  Communicate.  Just like we all grieve differently, anticipatory grief is different for everyone.  Expect that everyone in your family may be experiencing and coping with anticipatory grief in different ways.  Keeping the lines of communication open can help everyone better understand one another.  If you are planning for the remaining time to be meaningful and comfortable, make sure to include all the important family members and friends in those discussions.

7.  Take care of yourself.  I know, vague and way easier said than done!!  But it is true.  Check out our posts on self-care (for normal people), yoga, and meditation for some ideas of ways to take care of yourself.  Remember the old cliché, you can’t take care of others if you don’t take care of yourself.

8.  Take advantage of your support system.  Caregiving and anticipatory grief can be a long road.  Do an assessment of your support systems so you know which people may be able to help you out (and who you may want to avoid!).  We have a great support system superlative journaling activity to help you out with your assessment here.

9.  Say yes to counseling!  I know, there are still some of you out there who may think counseling is just for wackadoos.  I am here to tell you that is just not true!  Counseling is helpful for normal, everyday people who just need a place to process complicated emotions and have some you-time.  So just say yes to counseling if you are feeling overwhelmed with the feelings of anticipatory grief.  You can check out our post on finding a counselor here.

10.  Relief is normal.  In the case of anticipated loses there can be months, years, and even decades of caregiving that can be overwhelming and exhausting (though adjectives don’t even seem like enough!).  When someone dies there can be a sense of relief that is completely normal, but that can also create feelings of guilt. Remember that feeling relief after an anticipated death does not mean you loved the person any less.  It is a normal reaction after a stressful and overwhelming time in your life.

11.  Don’t assume.  Just because your loss was an anticipated loss, do not assume this will either speed up or slow down your grief after the death.  We have said it before and we will say it again: we all grieve differently.

Hey, we have a print resource on this topic.

Suggestion – Approach “aggression” as a “reactive behavior”

In late March 2017, Sage Journals published a research article on the topic of responding to aggression and reactive behaviors in the home.  The abstract and a link to the full article (available at no charge) are copied below.

The authors note:  “Some dementia researchers, service providers and people with dementia have advocated against using the word ‘aggression’ in favor of the language ‘reactive behaviour’ to promote an understanding that such behaviours may be a reaction to a difficult situation such as fear, discomfort, pain or frustration.”

Researchers interviewed former care partners of those with dementia.  The caregivers were asked how they discussed, interpreted, and responded to aggression and reactive behaviors.

Brain Support Network volunteer Denise Dagan read over the article and shared these highlights.

People coming into the home, whether family or in-home care workers, often triggered reactive behaviors.  Care partners were frequently encouraged to institutionalize the care recipient because of reactive behaviors.  They were unable to find respite staff for in-home care who were trained to handle reactive behaviors, and in some cases gave up trying to do so, resulting in ‘burn out,’ and eventual institutionalization of the care recipient.

The upshot is that care partners found by approaching ‘aggression’ as a reactive behavior, by employing their understanding of the care recipient, and by acknowledging the circumstances, the care partners were generally able to address the behavior in a way that calms the care recipient and satisfies the underlying need.

People unfamiliar with the care recipient — especially those who view reactive behavior as ‘aggression’ — are fearful of the behavior and, therefore, unable and unwilling to deal with it.  This is true of family, friends, in-home and institutional caregivers. More education and training is needed to understand these behaviors as reactive, and to address them appropriately.

Sounds like good advice…




Responding to aggression and reactive behaviors in the home
Sage Journals
Rachel V Herron, Mark W Rosenberg
First Published March 26, 2017

Behaviours such as hitting, spitting, swearing and kicking can be a common response to personal, social and environmental challenges experienced by people with dementia. Little attention, however, has been given to how partners in care experience and respond to these behaviours in the home. This paper examines the emerging theme of ‘aggression,’ in seven interviews with nine former partners in care of people with dementia in Ontario, Canada. We explore how partners in care talk about, interpret and respond to these behaviours drawing on recent conceptualizations of structural and interpersonal violence in health and social geography and contributing to the growing body of research on relational care. We discuss the responses to, and implications of, these behaviours at a range of spatial scales and identify important considerations for future research.

“How do we cope with anger as a caregiver?” (Caregiver Space)

Today’s post on The Caregiver Space addresses anger, which is a normal reaction to the caregiving situation.  The author, social worker Iris Waichler, describes several things caregivers can do about feelings of anger, including:

* Recognize that you are making a difference even when it doesn’t feel that way
* Be kind to yourself
* Allow yourself respite
* Take a moment to consider why you are angry
* Incorporate some fun into your role as a caregiver
* Redirect
* Identify healthy ways to release your anger
* Don’t spend time getting upset about things you cannot control
* Recognize you cannot change past relationships

Also, Ms. Waichler says:

“The biggest mistake caregivers make is not taking time taking care of themselves. You need to identify a person you can candidly talk to about the challenges of your caregiving experience. Another great source of support are caregiver groups or on line caregiver chat sites where you know others understand and have empathy for what you are experiencing. Finally, a healthcare professional with expertise in this area can offer counseling to help.”

Here’s a link to the post:


How do we cope with anger as a caregiver?
by Iris Waichler
May 3, 2017
The Caregiver Space

Urinary Problems in PD – Webinar Notes

The Michael J. Fox Foundation (michaeljfox.org) hosts webinars every third Thursday on various Parkinson’s Disease (PD) topics.  The April 2017 hour-long webinar was on urinary symptoms in PD.  The speakers addressed how PD affects the autonomic nervous system, including bladder functions; how urinary problems are diagnosed and managed; and the latest in research.

Certainly many in the Brain Support Network community cope with urinary symptoms.  During the webinar, alpha-synuclein is mentioned.  Both multiple system atrophy and Lewy body dementia are disorders of alpha-synuclein.

The webinar recording is available online here:


(You’ll need to register first to obtain access to the recording.)

Brain Support Network volunteer extraordinaire Denise Dagan listened to the webinar and took notes.  Her notes are copied below.

Sorry but the Fox Foundation doesn’t announce its webinar presenters in advance, and that information is not posted to its website.  So I’m unclear who all the presenters were.  One of the presenters is Dr. Maria De Leon, is a retired movement disorder specialist who also has Parkinson’s Disease.   Other presenters were Dr. Miyasaki and Dr. Juncos.  The moderator is always Dave Iverson, a journalist who has PD.



Denise’s Notes

Urinary Problems in Parkinson’s Disease
Michael J. Fox Foundation Webinar
April 20, 2017

The Autonomic Nervous System Controls the Body’s Automatic Functions:
* Blood pressure
* Heart rate
* Temperature
* Digestion
* Sexual function
* Bladder control

Constipation can affect bladder control.  Urinary and sexual function are under treated because symptoms are attributed to aging, rather than to Parkinson’s disease.

Autonomic Problems are Common in Parkinson’s:
* Up to 80% of people with PD may experience an autonomic symptom during their disease course.
* Autonomic symptoms are likely due to the underlying disease process of Parkinson’s, but can be worsened by certain PD and other medications.
* The protein alpha-synuclein, which misfiles in PD, may play a role in autonomic dysfunction.

Alpha-synuclein not only collects in, and damages, the brain, but affects the periphery of the nervous system as well (ganglia and nerve roots of the autonomic nervous system) leading to the degeneration of those nerves.  Most of the symptoms caused by this degeneration can be managed, including by PD meds that treat motor symptoms.  Sometimes these meds make autonomic symptoms worse.  Tell your Dr. so he/she can adjust meds for best autonomic symptom treatment.

In general non-motor symptoms tend to cluster together.  Over time people accumulate more non-motor symptoms, including autonomic symptoms.  There needs to be a balance of symptom treatment with medications -vs- side-effects of those medications.

PD Urinary Problems May Include Difficulty Holding or Emptying Urine:
The bladder stores and empties urine.  In Parkinson’s, the brain’s control of the bladder is disturbed.
* Difficulty holding ruing may lead to:
— Strong urges to urinate
— Increased frequency of urination, especially at nighttime
— Accidental loss of urine (incontinence)
* Difficulty emptying urine could cause:
— Hesitancy when starting urination
— Weak stream
— Feeling of incomplete bladder emptying
* Difficulty holding and emptying urine can lead to urinary tract infections.

Dr. DeLeon initially experienced increased urgency.  10 years into her diagnosis she has discovered it is not one single factor causing bladder problems.  Not just worsening PD, or needing medication adjustment, but aging, diabetes, prostate enlargement, etc., comes into play.

Most common urinary symptoms in PD:
* Irritative symptoms – noctural frequency, daytime urgency, incontinence (leaking), daytime frequency
* Obstructive symptoms – hesitancy, poor flow, incomplete emptying
* Aging contributes to all of these symptoms.

How do you sort out what’s caused by PD and what’s due to aging, enlarged prostate, etc.?
* Best practice in diagnosis is building a multidisciplinary team to determine what is going on with the patient.
* Uro-dynamics is a test whereby the bladder is filled and its function is monitored.
– In overactive bladder any amount of content causes contraction, urgency, therefore frequency.
– In obstructive bladder there is difficulty in flow.  When caused by enlarged prostate, it can be treated with meds and/or surgery.
* Treatment begins with least invasive to more invasive.

Have an open conversation with your physician about urinary issues because most symptoms have a treatment if the cause can be determined.  Patients should not assume new urinary difficulties are associated with PD and/or aging, but mention it to your doctor and be persistent, especially if it becomes a quality of life issue for yourself or your caregiver/family.  Keep track of your urinary behaviors and symptoms to best help your doctor(s) determine the cause of your bladder and constipation issues.

(Dr. DeLeon found her constipation was causing bladder obstruction, so treating the constipation eased bladder issues).

Another issue is difficulty with movement impeding getting to the toilet in time, getting clothing closures undone in time, etc. due to increasing PD symptoms.

Listener question about his mother having frequent urinary tract infections.  In reply, an MD says incomplete emptying of the bladder is common in people with PD due to improper functioning of the bladder muscles, especially in older men due to enlarged prostate. Leaving urine in the bladder is the perfect medium for bacterial growth and resulting in frequent urinary tract infections (UTI). These can be treated with antibiotics, even chronic prophylactic antibiotics (although this puts you at risk of antibiotic resistance), and surgical intervention.  Elderly people can not realize they have a UTI, which can adversely affect PD symptoms, PD medications don’t work as well, and seem just as though they are having a bad day because the older you are the less prominent the symptoms of s UTI.  Systemic UTI (beyond the bladder) can cause confusion, hallucinations, and ER visits.  Because of this, UTI must be in the fore of your mind when and older person with PD is feeling under the weather.

Treatment Targets the specific Urinary System:
Difficulty holding urine
> Non-pharmacologic
– Pelvic floor exercises
– Limit fluids/caffeine, schedule bathroom breaks, use incontinence aids
> Pharmacologic
– Medication to relax the bladder
– Botulinum toxin injections

Difficulty eliminating urine
> Pharmacologic
– Medication to stimulate bladder emptying
– Evaluate current drugs to ensure none contribute (e.g., Artane/trihexiphenidyl)
> Non-pharmacologic
– Intermittent catheterization

* Consider seeing a urologist or other doctor with expertise in the urinary system to compete urodynamic testing and determine if symptoms are from Parkinson’s or other issues.

* Tracking symptoms can be useful in managing these problems.

Listener question: How do PD meds complicate urinary problems, particularly frequency?  MD answer:  Generally, PD meds do not cause bladder problems.  Used to use anti-cholinergics (for people with tremor), including Amantadine, which can result in urinary retention or inability to void.  Other meds for non-motor symptoms, like depression (Mertazapine) has anti-cholinergic affects, as well.

Also, low blood pressure during the day can result in having to get up frequently at night to pee because sitting and standing the kidneys don’t have high enough blood pressure to produce urine, and laying down at night increases blood pressure and allows kidneys to produce urine and fill the bladder.

How does one reconcile conflicting advice about staying hydrated to maintain blood pressure, and limiting fluids to compensate for difficulty in holding one’s urine?  Fluids help with constipation, which affects your ability to void.  After 6:00pm don’t drink a lot of fluids to minimize nighttime urination.

Dr. DeLeon contributes fluids are especially important during the hot months of the year, but during the daytime.  Also avoid caffeine, chocolate, and spicy foods which can all make you pee more often.

Pelvic floor exercises are often prescribed for women with respect to birth.  Try to stop the stream while you pee to find the muscles to exercise.  Don’t do this while you pee to prevent urine retention and UTIs.  Both men and women should do this exercise several times to a count of 10 throughout the day to strengthen pelvic floor muscles.  This prevents leakage and helps to void completely.

What medications can be helpful?
– What can be aggravating the situation so can be eliminated or modified to improve the situation, especially diuretics, opioids, amantadine, anti-cholinergics, calcium channel blockers.  Work with the physician team to adjust medications.
– Other medical conditions that can aggregate bladder symptoms, like BPHD, atrophic vaginitis, prior abdominal surgeries, how many children you have had, sleep disorders, diabetes, venus insufficiency, etc.
– Medications to help the bladder relax or minimize irritation and contracting before getting to the toilet.  These are anti-cholinergics but not those that stimulate the bladder.  There are many choices, like Detrol, or Vesicare, which has been studied on PD patients.  There are potential side-effects.  Beta3 receptor, Myrbetriq, works but may cause high blood pressure.
– Medications to improve emptying by relaxing the sphincter (Flomax, Rapiflow) and reducing the size of the prostate.  Some of these drop blood pressure more than others.
– In PD patients with motor fluctuations, minimizing OFF periods reduces urge to empty the bladder, especially when one cannot move well.

Dr. DeLeon commented about what’s been most helpful, personally. Many women tend to have greater risk of UTI and urgency from taking Azilect, but it helps her with pain so she has to find a way to work around balancing symptom treatment.  She was taking Myrbetriq and anti-spasmotic, but everything (even behavior therapy) only helps for awhile.  Dopamine can inhibit release of insulin and found she was becoming insulin resistant.  Even though she is not diabetic, she is on blood sugar medication, which stopped her bladder problems and she was able to stop taking Myrbetriq.

Dave asked Dr. Miyasaki about connection between blood sugar levels and bladder issues.  There is a close connection between the brain and the gut, including the pancreas.  Adding an endocrinologist to your care team is warranted.  PD patients have an increased risk of diabetes, statistically, but the reason is unknown.  Some diabetes meds increase kidney excretion of glucose resulting in urinary frequency.

Ongoing Research into Urinary Problems and Parkinson’s
* Trials are investigating the brain mechanisms involved in overactive bladder, as well as varied treatments.
> Medications = e.g., Melatonin
> Behavioral modifications = pelvic floor exercises, and Bladder routine/schedule
> Transcutaneous electrical nerve stimulation = Non-invasive stimulation of lower leg nerves through skin device.

Dr. Miyasaki agrees that starting with the least invasive treatments is wise.  Melatonin has multiple benefits to patients, especially for sleep.  It is difficult to determine the benefit of behavior modifications, but they are not harmful and can be beneficial so they are worth a try.  There are reports that transcutaneous electrical nerve stimulation help with both frequency and difficulty emptying.  People with PD can have a less common disorder where the sphincter of the bladder will not relax.  It can be quite painful and risks UTIs.  People who have had DBS report better sleep and less urinary frequency, especially at night.

More questions about how much fluid and when it should be consumed?
8oz, 6-8 times daily until 6:00pm – depending on whether you are taking diuretics.

Any connection between bladder problems and development of kidney stones?
If you’re not able to void regularly you may develop kidney stones, but they have more to do with your body eliminating various minerals or whether you’ve had repeated infections.  If you are well hydrated, kidney stones shouldn’t be a problem.

Dr. Miyasaki feels strongly that your neurologist is connected with other specialists so each patient has a multidisciplinary care team, especially those who are interested in treating Parkinson’s disease within their specialty, like urology, and see a volume of patients to really develop an expertise in treating Parkinson’s patients overall.

Dr. Juncos doesn’t want people to forget Botox can be tremendously beneficial to urinary treatment (and other non-motor symptoms) in Parkinson’s disease and can be used repeatedly.  Also, men are offered prostate surgery to reduce urinary obstruction, but that will not treat the autonomic symptoms, so what level of benefit can they expect from the surgery?  Ask a lot of questions before you do the surgery.

Dr. DeLeon reminds people there are many treatment options for urinary issues and there is no reason to be embarrassed.  Bring it up with your doctor and be patient in determining the problem and treatment.  Keep the symptom diary for ALL PD symptoms.  It is infinitely useful in your own PD care.

“Learning from our Emotions” – chapter 5 of “Caregiver Helpbook”

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 ($30) in both English and Spanish at powerfultoolsforcaregivers.org.

The title of chapter five is “Learning from our Emotions.”  This chapter “explores the difficult emotions connected with caregiving [including grief] – to help you understand and learn from them – and offers tools to help you manage your feelings.”  Positive feelings like caring, commitment, and hope are addressed along with negative feelings like grief, resentment, anger, guilt, depression, sadness, fear, and frustration.

Here’s Denise’s report on chapter five.



Notes by Denise

The Caregiver Helpbook
Chapter Five – Learning from our Emotions

“Feelings are referred to as positive and negative, not because they are good or bad, but based on how they often feel. …guilt and anger feel uncomfortable to most of us and are often referred to as ‘negative.’  Love feels good and is referred to as ‘positive.’”

Often positive feelings, like caring and commitment, are accompanied by negative feelings, like resentment, anger, and guilt.  This mix of contradictory feelings is normal.  It is crucial to identify and accept them before you can accept loss.

Of course, “Only you know your losses since your situation is unique and what you perceive as a loss is based on how you view your situation.  Another person may perceive the same situation differently.”  Examples include loss of companionship, financial stability, health, sexual relationship, dreams for the future, independence, lifestyle as you’ve known it, etc.

Your care receiver may also be struggling with strong feelings, including sadness, depression, fear, and frustration.  Use “I” statements, active listening, assertive and aikido communication styles to communicate as much as possible.  There’s an exercise on page 92 to help you identify and communicate about your personal losses together, to maintain and build your relationship.

If/when illness limits your ability to communicate, read your caree’s body language, tone of voice, etc.  Much can be said with a touch.

The Essence of Grief

“When you lose precious parts of your life, grief is a natural response.”

“Your grief response is uniquely yours and is determined by what the loss means to you.”  How attached were you to what was lost?  How will the loss affect your life?  How have you coped with change and loss in the past?

“Grief brings…many strong, complex emotions.  It may include loneliness, frustration, anger, anxiety, confusion, fear, guilt, resentment, sadness, and depression.  Denying, avoiding, or minimizing feelings only complicates your grief response.”

Grieving your own way:

When someone becomes ill in a family, each person will grieve differently.  “There is no right or wrong way to grieve, only your own way. … To honor each person’s grief response… makes it easier to accept the differences, rather than let them be a source of conflict.”  Talking about it will help you to “respect each other’s feelings and become more supportive of each other.”

Anticipatory grief is a grief response that can be experienced before an actual death.  When someone is diagnosed with a long-term illness both family members and the patient can anticipate the loss of abilities and independence, as well as the eventual ultimate loss of life.

Tasks of grieving:

“In his book, Grief Counseling and Grief Therapy, J. William Worden describes four tasks people must complete to reconcile loss and begin healing.  They are an ongoing, sometimes slow process.  They do not move in orderly stages, but rather in a fluid process that is interwoven with the rest of your life.  The tasks are:”

1. “Accept the reality of the loss.  Identify and acknowledge each loss.  Do not deny or minimize them.  This is an emotional and intellectual process and takes time.”

2. “Work through the pain of the loss.”  “If you don’t work through your feelings you can compromise your physical and emotional well-being. … Doing grief ‘work’ is a difficult task.  It is made more so when others are uncomfortable with your feelings and give you the subtle message that you ‘shouldn’t feel that way,’ or that you should ‘pull yourself together.’”

3. “Adjust to your losses.  Adapting to ongoing loss and change requires that you recognize and accept what you can’t change.  At the same time, efforts to change what you can will help you focus on pleasures that remain.  This can give you a much-needed sense of mastery over your environment.  If you strive to hold on to what is lost, you lose the precious opportunities that remain, and your frustration and grief will get worse.”

4. “Reinvest in life.”  This, “empowers you to move forward. Rebuild your life, incorporating change and loss.”

A different kind of loss:

“If you are a caregiver for a person with whom you have had a difficult relationship, and are caregiving out of a sense of duty, you may still feel loss. … Your losses have more to do with what has never been and can never be.”  Your feelings may “include a mixture of regret, resentment, anger, loneliness, and sadness.”  They are, “complex and difficult to sort out.”  You may find it, “helpful to talk with a mental health professional.”

These tools may help you grieve your losses:

* Express your feelings in constructive ways, including physical activity, writing, or other stress reduction activities.
* Talk about your feelings with understanding people.
* Give yourself permission to cry.  It is a valid way to release feelings and tension.
* Get support.  “A disappointment for many caregivers is when friends they thought would be supportive are not.”  There are many ways to find someone who is, including other friends, family, a grief support group, clergy, or professional bereavement counselor. Most hospices provide grief support groups that are open to those who didn’t use hospice services. Funeral homes, and hospitals will also have grief support resources and may be able to help you locate a support group. There are also national grief support organizations with local chapters that host support groups.

Feelings and Caregiving

The caregiver’s feelings:

Your feelings are affected by situational factors, including:
* Your relationships with the care receiver.  Has is been positive or difficult, for the most part?
* The caregiving situation.  Is it 24-hours-a-day?  Are you both a full time caregiver and employee?  What about time for you?
* Your support system.  Do you share caregiving responsibilities with family or friends or are you ‘doing it all?’
* Your strengths and coping skills when dealing with loss and change.  Do you have healthy ways to relieve stress?
* Your reasons for entering the caregiving role.  Did you feel you had no choice?  Did you do so our of love?
* The care receiver’s personality.  What impact the disease has had on him/her – emotionally, behaviorally, and physically.

“Feelings can be helpful.  They can be a signal to stop and:
* assess what is going on for you.
* determine how you feel about the situation.
* make necessary changes.”

Current loss often resurrects past losses and feelings.  Unresolved feelings of grief surface later in different ways, as evidenced by the example of a 54-year-old woman, Jean, who had overwhelming feelings over the loss of her mother when her husband became ill. Her mother had died when Jean was 16, but nobody talked about it. The feelings don’t go away, no matter how much we deny or avoid them.  Jean now had to deal with the loss of her mother as well as current losses.

The care receiver’s feelings:

“Anger is a common response to chronic illness, and is often displaced onto others.”  You may, “bear the brunt of this hostility,” perhaps because you are the only one there, or are most closely associated with the loss.  “Maybe you are the safest person for the care receiver to express anger toward.”

“It’s important to understand all you can about the disease to better cope with the care receiver’s feelings and not take emotional outbursts and expressions personally.  This can be hard to do.”

“When anger, resentment, and other negative emotions are directed at you, remember these are complicated emotions and the care receiver’s anger contains hurt and pain.  The care receiver is responding to being chronically ill and dependent.  Part of his adjustment, as well as part of yours, is learning to cope with difficult feelings. The better you both are at identifying and managing feelings brought about by the illness, the more your situation will improve.  See Chapters 3 and 4 for communication tools that are helpful in handling difficult feelings.”

Common Emotions of Caregiving

“Denial – is the way people protect themselves from reality … when it is too painful to absorb all at once. … The situation becomes real, and denial lessens, with the telling of the story to someone you trust.”

Fear and Anxiety – comes with the ongoing uncertainty and stress of living with a chronic illness.
* Fear is directed toward a specific threat that you can identify, such as becoming dependent, pain, loss of control, etc.
* Anxiety is feelings of apprehension in the absence of a specific danger.  It occurs when you are trying to control an unpredictable situation.  With caregiving, anxiety has many sources, like:
– changing roles and responsibilities
– living with continuous change (emotional, cognitive, financial, and social)

“Often with fear and anxiety, a sense of dread and a vague sense of impending loss accompany a varity of physical symptoms and increased feelings of helplessness.  Physical symptoms may include a feeling of uneasiness or agitation, cold hands and feet, and uncontrollable shaking or trembling.  Muscles may be tense, especially in the neck and shoulders.”

“Circumstances alone do not cause fear and anxiety; it is what we think about them that affects our response.”

“As the Chinese philosopher Lin Yutang said, ‘True peace of mind comes from accepting the worst.  When we have accepted the worst, we have nothing more to lose and everything to gain.’”

“If you are anxious or fearful about a situation, these tools may help:”
* Confront the worst that can happen.
* Educate yourself about the disease, treatment, and what you can expect.  Eliminate as much ‘unpredictable’ as you can.
* Break fear and anxiety down into specific components.  It is easier to cope with identified concerns than vague feelings.
* Problem-solve.  Get the facts, analyze them, make a decision, then act.
There is an exercise on page 102 for problem solving to manage anxiety and fear.

“Anger – is complex…hurt, pain, frustration, and fear often underlie feelings of anger.  It may seem easier to deny these uncomfortable feelings.”

“When you feel you are the recipient of unjust anger, these tools may help you handle the situation:”
* Set realistic limits.  Try to wait for someone to yell themselves out.  Otherwise, excuse yourself to talk about it later.
* Count to 20.  Ask yourself if the anger is really directed at you.  If not, reframe your perspective.  Perhaps, “He is having a bad day.”
* Use humor to lighten the situation.
* Develop an awareness of your own feelings.  This makes is easier to respond without anger.
* Develop defusing statements like, “This must be a rough day for you,” or, “I love you,” if appropriate.
* Use the aikido style of communication because emotional situations are ideal for aikido communication.

“Your own anger may appear as frustration, impatience, resentment, and perhaps withdrawal…. How can you admit anger about a spouse having Parkinson’s disease and totally disrupting your lives?  After all, ‘he’s the one who’s sick, how can I be angry at him?’ Sometimes anger is displaced onto others, like the doctor or nurse.”

Its important to find healthy ways to manage anger.  ’Swallowing’ your anger can have adverse physical effects.
Use these tools to manage anger in constructive ways:
* Recognize and accept your anger.  You are less apt to displace your anger onto others.
* Use “I” messages.  Avoid using ‘you’ messages and blaming others. See chapter 3.
* Structure situations so it feels safe and comfortable to express feelings.  For example:
— Use a private room or place to talk.
— Agree that you will allow each other to express honest feelings without blaming the other.  Use “I” messages.
— Set a time limit of 5-10 minutes for each of you to speak.
— Take turns talking.  Do not interrupt
* Select the best time to express anger.  There is often good reason for the old adage, ‘When angry, count to ten.’”
* Set realistic limits.  When you experience unjust anger, say, “I will not stay in this room and listen to anger I don’t deserve.”

“Most importantly, use the energy and fire of anger to make positive changes.”

Resentment – often builds in caregivers who feel the balance of their giving outweighs the nurturing and support they receive.
These tools may help you avoid feeling resentful:
* Give ourself permission to take care of yourself.  Maintain activities you enjoy.  Find time for yourself.
* Get adequate rest.  It is critical to caregiving because an exhausted caregiver is of no help to anyone.
* Set limits.  Learn to say no honestly, even to the care receiver.
* Find small but important ways to help yourself, especially enlisting help of the caree.  This reduces the caregiver’s burden and feelings of resentment, and maintains the caree’s independence and self-esteem.
* Take time for pleasure.  Do activities together that you both enjoy.  Don’t let tasks of caregiving dominate your relationship.

Guilt – can become inflated to unrealistic proportions.  It is common for caregivers to feel guilty about their complex, difficult emotions, even though they are a normal part of the caregiving experience.  You may simultaneously feel guilty as a caregiver for sensing the loss of having an unlived life, even while planning enjoyable activities in order to have a life somewhat independent of the care receiver – and guilty about the fact that you can do what he cannot.  Its complicated.

“We all make mistakes and feel guilty.  When this happens these tools might be helpful:”
1. Admit your mistake and apologize.  Saying, “I’m sorry,” can be healing.
2. Correct the situation in whatever way possible.
3. Forgive yourself.
4. Ask forgiveness from the injured person(s).
5. Try to learn from the experience.

“If you feel guilty without clear cause, ask yourself:”
* Did I actually do something wrong, or do I just wish I dad done something differently?
* Am I feelign guilt or regret?”

“Regret is a sister to guilt and a feeling that is often present in situations involving loss…  For example: Mark meant to call his mother.  When she died suddenly, he regretted that he hadn’t. … Regret is ‘a feeling of disappointment or distress about something that one wishes could be different.’  Guilt is ‘a remorseful awareness of having done something wrong,’ or ’self-reproach for supposed inadequacy or wrong-doing.’”

“If you are having difficulty with guilt, try these tools:
* Talk with a supportive, understanding person about your feelings to help you clarify and come to terms with your feelings.
* Stop blaming yourself.  Ask yourself, “Is this my fault? or do I just wish things were different?  Is this guilt, or regret?”
* Ask yourself, “What did I do that was good and right?” Identifying the positive things is a counterbalance to guilt and blame.
* Understand the limits of your responsibility.  Identify unrealistic expectations.
* Accept the fact hat no one is perfect.  Mistakes happen.  Its what we do with them that makes the difference.
* Seek professional help.  This is especially important if guilt persists.

Depression – is higher among caregivers than in the general population, and even higher among caregivers of brain-impaired adults.  This section discusses two types of depression most relevant to the feelings experienced by chronic caregivers: grief-related depression, and clinical depression.

Symptoms of depression

“Grief-related depression (the normal depression of grief) and clinical depression (depression that requires treatment) can look very much alike.”  Both “can experience sadness, tearfulness, sleep problems, and appetite and weight changes.  However there are differences.  If you can understand these differences, you can better recognize depression in yourself (and others) and seek professional help.  Grief-related depression…can develop into clinical depression.”

“Clinical depression tends to be characterized by:
* An inability to experience any pleasure.
* A sense of hopelessness and pessimism about the future
* Low self-esteem, low self-image, and feelings of worthlessness
* Suicidal thoughts or attempts
These symptoms are more severe, last for an unusual length of time (two weeks, or longer), and affect the ability to function.

Clinical depression is also diagnosed by at least five of these symptoms:
* Persistent sad or ‘empty’ mood
* Loss of interest or pleasure in previously enjoyed activities, including sex
* Increased fatigue, being ‘slowed down’
* Marked change in sleeping habits (insomnia, early-morning waking, oversleeping)
* Marked change in appetite; significant weight gain or loss
* Feelings of guilt or worthlessness
* Difficulty concentrating, remembering, and making decisions
* Thoughts of suicide or death that should be taken seriously by family and friends.

Managing depression

Depression is treatable.  Up to 80% of people with serious depression can improve significantly with a combination of short-term talk therapy and antidepressant medications.

“Depression distorts our perceptions…we tend to see the glass as half empty and view situations negatively.  Cognitive therapy helps identify distorted, negative thinking and learn how to ‘reframe’ those perceptions in a more accurate way.”

“Depression affects relationships.  It affects how we think, act and feel toward others…Interpersonal therapy is designed to help people in their difficult relationships with others.”

“Both therapies deal with current thoughts, feelings, and behaviors…not what happened in childhood.  They focus is on current difficulties and patterns that contribute to depression.”  They “lessen depression by helping you learn new skills and ways of looking at and doing things.”

There are many antidepressant medications to choose from.  They are not addictive or habit forming and are generally safe when taken as prescribed.  They work by restoring balance of the neurotransmitters and restoring the brain to normal function.  They can take a few weeks to work, although some notice improvement in a few days.  As with any medications, follow instructions and report side effects to your doctor.  You may try a few before finding one that works for you.

Alcohol, drugs, and depression

“Depression is not helped by alcohol or drugs.  They only mask the pain from your feelings temporarily.  Alcohol and tranquilizers depress your central nervous system and will make emotional depression worse.

Caring For Yourself

“Treat yourself as you would anyone you cherish.  Be gentle and compassionate with yourself, not demanding or judgmental.  Accept your human frailties, but at the same time, see your strengths.” “Managing the difficult emotions of caregiving…can give you an increasing sense of control over your situation.  These tools may be helpful:”
* Participate in activities you enjoy.  Rediscover those accomplishments that build your self-esteem
* Treat your body well.  Eat properly, and exercise regularly for fitness and stress relief
* Use relaxation techniques.  Develop awareness of tension in your body by doing frequent body scans.  Go limp with special attention to the tense areas.
* Make use of books and tapes for information and tools for working with depression, stress, emotions, and relaxation.
* Get a good night’s sleep.  Insomnia is common but often temporary so don’t worry about it.  That causes more stress and sleeplessness.  Instead: give up caffeine, avoid sleeping pills, try meditating or repeating prayers, get physically tired, and get up to read or work until you are tired.
* Get social support.  Have at least one friend you can tell your troubles to.  Avoid isolation.
* Attend a support group.  They are a safe, supportive environment to share experiences and learn from each other.
* Write your feelings down on paper to keep in touch with and examine your feelings, as well as release those feelings.
* Change negative self-talk to positive self-talk because your emotions are derived from your thoughts.

Page 112 has an exercise to identify your feelings.  It recommends doing it frequently as feelings are ever changing.


“Difficult feelings, including depression and suicide, can be the result of hopelessness and despair.  An attitude of optimism and hope contributes to your well-being and even creates the potential for slowing the progress of an illness.”

“It is important to remember that even if you, as a caregiver, feel your situation is hopeless, it does not necessarily follow that the care receiver is without hope.”

“It’s important not to take hope away from another nor to instill false hope.”

“13 Secrets that Make Caregiving Easier” (AgingCare.com)

This post on AgingCare.com is titled “13 Secrets that Make Caregiving Easier.”  Though it’s from seven years ago, the ideas are still relevant today.

The thirteen secrets include:
* remember the person inside
* rethink personal boundaries
* have patience
* trust
* arm yourself with knowledge
* do it from the heart
* have humility
* look for non-verbal clues
* be responsive, but have limits
* be present
* communicate with touch
* be non-judgement
* build teamwork

Here’s a link to the post:


13 Secrets that Make Caregiving Easier
By Marlo Sollitto
Published about 2010

“About to burn out? Try this.” (Caregiver Space)

In a post today on The Caregiver Space, Cori Carl points out that many caregivers know what the care recipient needs but don’t know what they themselves need.  To avoid burning out, she suggests several things:
* eliminate decisions that don’t really matter
* get back control
* get in touch with you
* stay connected
* recognize no one person is good at everything
* know what you need

Here’s a link to the full post:


About to burn out? Try this.
by Cori Carl
The Caregiver Space
May 1, 2017