“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:

www.nytimes.com/2017/04/25/well/family/womens-friendships-in-sickness-and-in-health.html

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.

Robin

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www.helpguide.org/articles/caregiving/respite-care.htm

Respite Care:  Finding and Choosing Respite Services
By Melissa Wayne, MA, and Monika White, PhD
HelpGuide.org
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.

RESPITE CARE BASICS

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.

TYPES OF RESPITE CARE SERVICES

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.

GETTING YOUR FAMILY INVOLVED IN RESPITE CARE

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.

SELECTING RESPITE CARE SERVICES AND PROVIDERS

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.

PAYING FOR RESPITE CARE

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.

STRATEGIES FOR SUCCESSFUL RESPITE CARE
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.

RESOURCES AND REFERENCES

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.

Robin
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whatsyourgrief.com/anticipatory-grief/

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.
http://whatsyourgrief.com/product/anticipatory-grief-a-guide-to-impending-loss/

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…

Robin

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journals.sagepub.com/eprint/XbyPsrHRu84qmBNM8P4P/full#

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.