“‘Like Groundhog Day’: The challenges of caring for an aging parent”

This article in the Sydney Morning Herald is about the role reversal when children are now taking care of parents and what a difficult adjustment that is for everyone.  The stories of three women are described.

Here’s a link to the article:

www.smh.com.au/lifestyle/life-and-relationships/like-groundhog-day-the-challenges-of-caring-for-an-ageing-parent-20170413-gvk4rt.html

April 14 2017
‘Like Groundhog Day’: The challenges of caring for an ageing parent
by Cosima Marriner
The Sydney Morning Herald

“Grief before death – understanding anticipatory grief”

healthdirect is a government website in Australia with health information.  This is a short article on anticipatory grief — the grief caregivers can feel though the care recipient is still living.

The full article is below.

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www.healthdirect.gov.au/understanding-anticipatory-grief

Grief before death – understanding anticipatory grief
healthdirect (Australia)

Carers often feel grief even though the person they’re caring for is still alive. This could happen if the person being cared for has a life-limiting condition (a condition that has no reasonable hope of a cure), or their personality has been affected by their illness. Although not everyone experiences this ‘anticipatory grief’, people who do can feel the same emotions and sense of mourning as if the person had actually died.

You may have a wide range of emotions, such as loss, dread, guilt and anxiety. Everyone reacts differently, and it’s good to accept that your coping method is unique.

The grief you might experience may not initially be for the person you care for, but for the life you currently lead. Becoming a carer can change your life dramatically, and you may feel like you’ve lost some of your freedom or social life.

The extra responsibility, and not being able to do anything without planning, can be stressful. You might feel guilty about feeling this way, but it’s a natural reaction to such a big change in your life.

Grieving before a person dies doesn’t necessarily mean that you won’t grieve when they pass away. Everyone reacts differently to these circumstances. While some people feel prepared for the death and have closure, others may start the grieving process all over again.

If you experience pre-death grief, it’s vital for you to talk to someone.

Dealing with conditions that affect a person’s personality and memory can be very traumatic, particularly if you’re caring for a relative or close friend.

Many carers find that they grieve for the loss of the person they once were. You might grieve for the memories that you have together, which the cared-for person will forget. You may grieve for the changes to their personality or for any future plans that they may no longer be able to carry out. You may feel conflicting emotions as the person you look after loses their mental functions or stops recognising you.

Terminal conditions
Finding out that someone you care for has a terminal disease can leave you feeling powerless and devastated.

If you experience pre-death grief, it’s just as vital for you to talk to someone and feel supported as it is when someone has already died. You might find that it helps to talk to friends and family, or the person you care for. A long illness means both of you have time to slowly prepare for the death, to say what you want to say or to share memories. One idea is to write about what the person has meant to you and then read it aloud to them.

You might also consider talking to a counsellor. It can help to discuss your feelings with someone who is objective and doesn’t have emotional ties to the situation. This can help, particularly if the person you care for is in denial about their condition. The counsellor can talk to you about your feelings, suggest ways that you can help the person being cared for, and discuss the difficult post-death decisions that you may need to make, such as organ donation.

Bottling up your emotions can leave you feeling overwhelmed and, in some cases, affect your health. So it’s important to find someone to support you.

Source: NHS Choices, UK (Grief before death), nhs.uk

“Some Seniors Just Want To Be Left Alone, Which Can Lead To Problems”

This is a good article on why some seniors refuse home health care after hospitalization.  Medicare’s “home health benefit” is described generally.

Reasons seniors refuse care include:
* thinking that care is the first step in someone taking away independence
* not wanting strangers in the home
* not wanting someone to see hoarding or physical neglect in the home
* cost

On top of this, many seniors have:
* “unrealistic expectations of what recovering from a hospitalization will entail”
* compromised cognition, meaning they cannot understand their own needs or limitations

Some suggestions were given for communicating with seniors:

* Use plain language.  For example: “A nurse will check your medications and make sure they’re all in order. She’ll assess if you need physical therapy to help you regain your strength. And she’ll teach you and family members how to care for you once home care is over.”

* Rather than saying “Look, we think you really need help,” say “We want to help you take care of yourself.”

* “Emphasizing that a physician has recommended home health care can also be helpful.”

* When meeting resistance from a senior, say “Tell me more. What are you concerned about?”

The full article is copied below.

Robin

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khn.org/news/some-seniors-just-want-to-be-left-alone-which-can-lead-to-problems/

Navigating Aging
Some Seniors Just Want To Be Left Alone, Which Can Lead To Problems
By Judith Graham
Kaiser Health News
June 15, 2017

The 84-year-old man who had suffered a mini-stroke was insistent as he spoke to a social worker about being discharged from the hospital: He didn’t want anyone coming into his home, and he didn’t think he needed any help.

So the social worker canceled an order for home health care services. And the patient went back to his apartment without plans for follow-up care in place.

When his daughter, Lisa Winstel, found out what had happened she was furious. She’d spent a lot of time trying to convince her father that a few weeks of help at home was a good idea. And she’d asked the social worker to be in touch if there were any problems.

Similar scenarios occur surprisingly often: As many as 28 percent of patients offered home health care when they’re being discharged from a hospital — mostly older adults — say “no” to those services, according to a new report.

Understanding why this happens and what can be done about it is important — part of getting smarter about getting older.

Refusing home health care after a hospitalization puts patients at risk of a difficult, incomplete or slower-than-anticipated recovery. Without these services, older adults’ odds of being readmitted to the hospital within 30 or 60 days double, according to one study.

Why, then, do seniors, resist getting this assistance?

“There are a lot of misperceptions about what home health care is,” said Carol Levine, director of the United Hospital Fund’s Families and Health Care Project, a sponsor of the new report.

Under Medicare, home health care services are available to older adults who are homebound and need intermittent skilled care from a nurse, a physical therapist or a speech therapist, among other medical providers.

Typically, these services last four to six weeks after a hospitalization, with a nurse visiting several times a week. Some patients receive them for much longer.

Many seniors and caregivers confuse home health care with “home care” delivered by aides who help people shower or get dressed or who cook, clean and serve as a companion. The two types of services are not the same: Home health care is delivered by medical professionals; home care is not. Nor is home care covered by Medicare, for the most part.

This was the mistake Winstel’s father made. He thought he was being offered an aide who would come to his apartment every day for several hours. “I don’t want a babysitter,” he complained to Winstel, chief operating officer of the Caregiver Action Network.

Like many other seniors, this older man was proud of living on his own and didn’t want to become dependent on anyone.

“Older adults are quite concerned about their independence, and they worry that this might be the first step in someone trying to take that away,” said Dr. Leslie Kernisan, a San Francisco geriatrician and creator of the website Better Health While Aging.

Other reasons for refusals: Seniors see their homes as sanctums, and they don’t want strangers invading their privacy. They think they’ve been getting along just fine and have unrealistic expectations of what recovering from a hospitalization will entail.

Or there are circumstances at home — perhaps hoarding, perhaps physical neglect — that an older adult doesn’t want someone to see. Or the patient’s cognition is compromised and he doesn’t understand his needs or limitations. Or cost is a concern.

Robert Rosati, vice president of research and quality at Visiting Nurse Association Health Group, New Jersey’s largest private home health care provider, said about 6 percent of seniors who’ve agreed to receive home health care from his organization after a hospitalization end up refusing services.

Often, a breakdown in communication is responsible. Patients haven’t been told, in clear and concrete terms, which services would be provided, by whom, for how long, how much it would cost and what the expected benefit would be. So, they don’t understand what they’re getting into, prompting resistance, Rosati said.

Kathy Bowles, director of the Center for Home Care Policy & Research at the Visiting Nurse Service of New York, suggests a plain-language, positive way to convey this information. For example: “A nurse will check your medications and make sure they’re all in order. She’ll assess if you need physical therapy to help you regain your strength. And she’ll teach you and family members how to care for you once home care is over.”

“A lot of resistance arises from pride,” said Bowles, also a professor of nursing excellence at the University of Pennsylvania. “The conversation has to change from ‘Look, we think you really need help,’ to ‘We want to help you take care of yourself.’ ”

Emphasizing that a physician has recommended home health care can also be helpful. “In my experience, if a doctor says ‘I’d like a nurse to come see you and check that you’re feeling better,’ people are fairly responsive,” Kernisan said.

Instead of arguing with an older adult who says “I don’t want any assistance,” try to follow up by asking “Tell me more. What are you concerned about?” Kernisan suggested. “People really want to feel listened to and validated, not lectured to.”

This isn’t to suggest that persuading an older adult to accept unwanted help is easy. It’s not.

Last year, Winstel’s father had a medical device implanted in his spine to relieve pain from spinal stenosis — an outpatient procedure. Once again, he declined postoperative help.

Two days later, Winstel got a phone call from her dad, who had collapsed and couldn’t get up from the floor. Winstel said she’d call 911. “No, I don’t want someone coming in and finding me like this,” her father insisted. “You have to come.”

Later, at the hospital, doctors diagnosed an adverse reaction to medication and a surgical site infection on her father’s back. “He lives alone. He can’t reach back there. He wasn’t caring for the wound properly,” Winstel explained.

Extensive, heated conversations followed, during which her father insisted he was never going to change. “For him, living independently carries risks, and he’s willing to accept those risks,” Winstel said.

She hopes the new report on seniors refusing home health care will jump-start a conversation about how to bring caregivers into the process and how recommendations should be conveyed. “As the daughter of someone who has refused care, understanding that this is something lots of people go through makes me feel a little less crazy,” Winstel said.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

“The Five Love Languages of Caregiving”

This is a thought-provoking article written by a hospice social worker, Meredith Fields Lawler, LCSW, for Crossroads Hospice (based in several southern and midwestern states).

The ideas are based upon a book by Dr. Gary Chapman titled “The Five Love Languages,” which asserts that “people express and desire to receive expressions of love differently.”  The five languages are:

#1 – Words of Affirmation
#2 – Quality Time
#3 – Receiving Gifts
#4 – Acts of Service
#5 – Physical Touch

The hospice social worker suggests you know which of those five languages your loved one “speaks,” and then tailor your caregiving accordingly.

Food for thought….

Robin

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crhcf.org/Blog/the-five-love-languages-of-caregiving/

The Five Love Languages of Caregiving
by Meredith Fields Lawler, LCSW
Published June 28th, 2016
Crossroads Hospice Charitable Foundation

Love. It is such a simple word that has so many varying different expressions. There is the love we give to our spouse, which is different from the love expressed to our children, and yet different again in how we express love to our friends.

In 1992, renowned marriage expert Dr. Gary Chapman wrote a revolutionary book titled “The Five Love Languages” in which he helped us see that all people express and desire to receive expressions of love differently. Chapman’s book was focused on the marriage relationship, but since it was published, many companion pieces have been written about how these simple concepts are relatable to all relationships.

The caregiver role is one that is full of so many emotions and yet the central expression is love. It is true that some people give care out of a sense of obligation, but most have the driving force of love and devotion. Love is what gets them out of bed for the third time in the middle of the night as they hear their loved one calling. Love is what drives them to spend hours each week organizing medications. Love is what encourages them to sit down and listen to Mom tell the same story over and over again.

My sister, brother, mom and I all cared for our father when he was diagnosed with cancer and subsequently was admitted to a hospice program. Each of us loved my dad dearly, but how we expressed our love to him looked different. We are different people. Each of our relationships with Dad was unique and special. Love was so present in our caregiving in many ways.

Using Chapman’s iconic book, we will look at the Five Love Languages of Caregiving and how love is given and received in this relationship, and begin to appreciate and respect how different family members all express love and caregiving in their own unique way.

Using words that uplift and support caregivers can show them love and provide for their needs while on the caregiving journey.

Love Language #1: Words of Affirmation

“Love is kind. If then we are to communicate love verbally, we must use kind words.”
Dr. Gary Chapman

Jamie and her husband Carl cared for Jamie’s mother for many years before she passed away. First she was in their home and then they moved her into a nursing facility when she needed more care. Jamie made all the arrangements, planned transportation, signed the forms, packed her mom’s belongings and the many other tasks involved in moving a loved one into a nursing home.

The big day came and Jamie got to work getting her mom settled, but noticed that Carl was nowhere to be seen. She began to get frustrated as more time passed and still no sign of Carl. A couple of hours later, after all the unpacking had been done, Carl appears in the room and Jamie immediately gets angry with him. “Where have you been? I have been in here working myself to the bone and you have probably just been talking!”

Carl very calmly explains, “Yes, I have been talking. I have been talking to all of the staff. I introduced myself and told them about your mom and I was getting to know them. I have asked about their lives, their children and thanked them in advance for taking care of Grammy. I want them to know I care about them because then they will give Grammy more attention and affection when we are not here and I know that is a huge fear for you.”

In that moment, Jamie saw that Carl was being a caregiver in his way. He was giving words of affirmation to the staff and that is how he cared for her and her mother.

How to be a caregiver alongside someone whose love language is Words of Affirmation:

* Speak words of appreciation, encouragement and love to each other.
* Love does not keep a record of wrong. Use kindness in your words to each other and let the past be that; the past.
* Love is not demanding. When you need something, make a request and not a demand.
* Express gratefulness for what has been done and don’t focus on what has not.

The caregiving love language of spending quality time: Spending quality time with caregivers can communicate love to them and demonstrate to them your support.

Love Language #2: Quality Time

Spending quality time with the people you love is something that most of us enjoy, but for some, this is the ultimate expression of love. For those whose primary love language is Quality Time, sitting and talking, enjoying an activity together and being fully present is the ultimate way to give and receive love.

Mary and her husband Brad cared for their adult daughter who had developmental delays. Mary was the primary caregiver and did not work outside of the home. Brad was a hard worker and a loving provider for their family. For many years, he worked to build his business and provide financial security for his family.

He thought he was doing the most loving thing, but Mary was not happy. She was sad and felt so alone most days. Long days of caregiving would deplete her of any energy she had left. She would often say that she wished Brad would work less and spend more time with her, and yet Brad felt he was doing what would help her the most, as she wouldn’t have to worry about finances.

But, what Mary wanted was him. She wanted his attention and his love. They slowly began to figure this out and Brad began to make time with Mary more of a priority. He would arrange for someone to watch their daughter so they could go to dinner alone. He began to call her during the day, not to talk details, but to see how she was feeling and engage in her everyday life. Even when he had to be away for work, he created ways for Mary to feel his love and planned events for them once he returned.

As Dr. Chapman states, “One of the by-products of quality activities is that they provide a memory bank from which to draw in the years ahead.” Brad began to speak Mary’s love language and she was able to caregive from a happier, more secure place and peace returned to their home.

How to be a caregiver alongside someone whose love language is Quality Time:

* Learn to really listen when your loved one is speaking. Look them in the eye and do not attempt to complete another task while they are talking to you.
* Acknowledge their feelings without trying to “fix” anything, watch their body language and do not interrupt. Be fully present!
* Arrange for help with household chores to free up more quality time together.
* Make the time for quality activities — no more excuses.

Love Language #3: Receiving Gifts

“Almost everything ever written on the subject of love indicates that at the heart of love is the spirit of giving.”
Dr. Gary Chapman

Gift-giving is one of the oldest ways people express their love to one another. Whenever we attend a happy event, a wedding, baby shower, birthdays, or graduations, we bring gifts!

We honor people by spending time thinking about them, picking a gift out just for that one special person, wrapping it and presenting this beautiful visual representation of love. Very often, the dollar amount is not nearly as important as the time and thought devoted to the act of gift-giving.

Richard lived in an assisted living center and had three sons who all cared for him in their own way. His oldest managed his finances and ensured that everything was paid on time and that his money was being invested wisely. Richard’s middle son took him to doctor’s appointments, the grocery store and kept in communication with the staff at the facility. And Richard’s youngest son was the free spirit. He jumped from job to job and passion to passion.

He did not take on any “official” tasks in caring for his dad and his brothers would often get angry with him, and with Richard, because Richard would defend his youngest son. He would tell the other boys, “You don’t see him like I do. He comes and visits and always brings something: an article he thinks I will like ripped from an old magazine, a new shirt he found at Goodwill, his leftovers from lunch. Nothing big but he comes, he visits and he brings me something that lets me know he is always thinking of me. I feel loved by all of you, including your little brother.”

Richard was able to accept loving care freely given by each of his sons in all their unique and beautiful ways.

How to be a caregiver alongside someone whose love language is Receiving Gifts:

* Accept their gifts with gratitude and love no matter how small, even if you don’t like it.
* Honor the wisdom that one of the greatest gifts you can give is the gift of self. Be present for each other and slow down! Try not to rush around completing tasks, but give of yourself and your spirit.
* Bring them a gift — a small token of your appreciation that you are caregiving together. This will go such a long way in helping someone with this love language truly feel like you are a team.
* Acts of service support caregivers tangibly, showing them love through your outpouring of acts and service into their life.

Love Language #4: Acts of Service

Jan was caring for her father in her home, and her sister, Martha, lived close by and was an active caregiver as well. Jan and Martha worked so well together taking care of their daddy. They had love and respect for one another in the process of caregiving.

It was Martha’s practice to come by every day after work and check in on her dad and sister; she also knew that Jan’s love language is Acts of Service. So, when she arrived she would immediately take over whatever task Jan was doing and say something like, “I’ve got this. I can tell you have worked so hard today. Let me finish loading the dishwasher and cleaning up the kitchen.”

This was their routine to the point that when Jan saw Martha’s car turn the corner, she was filled with love for her sister and love for the caregiving process. Martha helped to fill Jan’s “love tank” so that the everyday duties of caregiving never felt crushing. She knew her sister understood her and appreciated her.

For a weary caregiver, (regardless of what their primary love language is) offering to help in tangible ways will sing love to them. “Let me know if I can do something for you,” is a lot less meaningful than “I would like to come and mow your yard on Wednesday. Let me know if that works with your schedule.” Offering very real help during a time when it can be hard for caregivers to even know what they need is a sure way to show your love and appreciation.

How to be a caregiver alongside someone whose love language is Acts of Service:

* Create a list of things you would like to do to help (bring a meal, clean their bathrooms, do laundry, go to the grocery store) and ask them which day would be good for them.
* When you are visiting, look around. If there is a broom handy, start sweeping while talking. If you notice that they are low on household staples when you leave, run by the store; drop those things off to them during your next visit.
* Get a group of friends together and have meals delivered a couple times a week.

Love Language #5: Physical Touch

Sadly, this life is full of crisis — auto accidents, illness, lost jobs, divorces and of course the death of dear loved ones. Crisis is all around us, and when these moments come, the natural instinct of many is to reach out and offer a hug. Physical touch is a way that all cultures show love and concern to each other. During times of crisis, we all long to feel loved, heard and supported.

Caregiving can have many crisis moments. “There are no more treatments.” “Your mother needs to be admitted to the hospital.” “The cancer has spread.” “I am so sorry, but you need to find another nursing home for your husband. He can’t stay here.” These are all statements that caregivers have heard and they each bring tremendous stress and sadness. For someone who has the primary love language of Physical Touch, a hug, a loving hand placed on the shoulder or a holding of the hand will all convey that you are present in their crisis in a huge way.

Barbara and her wife Vicky cared for Barbara’s brother, Gary, who was on hospice after a lengthy battle with cancer. He was living at an inpatient hospice facility and everyone knew that his time was short. Barbara was Gary’s primary caregiver and had been taking him to appointments, helping him through chemo, cooking for him, cleaning his home and doing all the other tasks of caregiving for many years. Barbara and Gary’s love for each other ran very deep

Vicky began to see her wife withdraw into herself as Gary began to slip away and become less responsive. Barbara would sit in the room with Gary, her arms tightly wrapped around herself, and every few minutes, she would reach out and touch Gary. Vicky realized that Barbara needed love. She needed to have a physical reminder that she was a good caregiver and had done well.

Vicky made a conscious decision to offer her love to Barbara in the ways that she needed. She held her hand, stood by Gary’s bed with a hand on Barbara’s shoulder and wiped her tears away as she cried. She was physically, and thus emotionally, present for Barbara.

As Gary took his last breath, Vicky held Barbara and supported her weight as she wept for her brother. Vicky did not let go and Barbara will say she does not remember much of that day except that “Vicky was there. She did not say much but she was with me. She held me, she loved me and I knew I could face tomorrow because she was going to be with me.”

How to be a caregiver alongside someone whose love language is Physical Touch:

* Find ways to offer your physical presence to them through a hug, holding a hand, stroking stoking their back or gently rubbing their shoulders.
* Do not shy away from their touch even if this is not your love language. If you did not grow up in a “touchy” family, it may seem awkward at first. Be patient with yourself as you learn to express love in a different way.
* Having something soft to hold can help someone whose love language is physical touch. When you have to leave, bring them a pillow to hold or a blanket to lay across their lap. This can be a great comfort.

All five of these love languages are important and should be present in any relationship. If someone you love has the primary love language of Gift-Giving, Gift Giving that does not mean that you never hug her or complete a task for her. As Dr. Chapman says say, all of the love languages will convey love, but when you find the one that really speaks to your loved one, that language that one will sing of your love for her.

My siblings, mother and I were able to love each other and my dad in very real ways and we are continuing even though Dad is now gone. My dad taught us about love — about meeting people where they are and loving them in the ways that they need. So even though Dad is not here physically with us anymore, his loving spirit will always be alive in our hearts.

* All stories are based on actual caregivers but the names and some details have been changed to protect confidentiality.

About Meredith Lawler, LCSW
Director of Outreach Programs at Crossroads Hospice Charitable Foundation
Meredith Fields Lawler is a Licensed Clinical Social Worker and the Director of Outreach Programs at Crossroads Hospice Charitable Foundation. A graduate of the University of Arkansas School of Social Work, Meredith has dedicated her career to medical social work, the elderly, hospice, death and dying and grief recovery work. In addition to her work at the Foundation, Meredith maintains a private practice in which her specialty is older adults undergoing life transitions, trauma, grief and loss. Meredith makes her home in Tulsa, OK with her husband and their three boys.

“Can Adult Siblings Get Along When Caring for Parents?”

This article on today’s Next Avenue website (nextavenue.org) is about adult siblings caring for their parents.

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www.nextavenue.org/adult-siblings-caring-for-parents/

Can Adult Siblings Get Along When Caring for Parents?
How that struggle can be helped by storytelling
June 12, 2017
By Liz Seegert
Next Avenue

There’s really no getting around the complicated relationships among siblings caring for parents. While some families work almost seamlessly as a team, others are like ships passing in the night, sharing little except a rotating schedule. And for some, conflict can be high.

Most of us try to make sense of these relationships through a method dating back to prehistoric times: storytelling. While it’s not the kind of storytelling that might immediately come to mind, this approach helps siblings manage and overcome the dynamics and challenges of caregiving, according to a new study.

What Is ‘Storytelling’ in Caregiving Relationships?

This “narrative sense-making” is how we frame our understanding of what’s going on and how we give meaning to shared parental caregiving.

“It’s playing through experiences in our minds and telling stories to ourselves and others to make sense of it retrospectively,” says lead study author Danielle Halliwell, a researcher at New Mexico State University. Strong, supportive sibling relationships can help with the psychological coping and well-being of family caregivers, but not everyone is so lucky. And often, our expectations don’t live up to the ideal created by the media or by society.

“Culture plays a large role in how we think we should go through life transitions with family members, so when it doesn’t go like that, it’s disappointing and we try to make sense of it by how we talk about it,” Halliwell explains.

3 Nearby Siblings, 3 Approaches Caring for Parents

For Kaye Vivian, her life situation — newly separated, self-employed and not tied to a specific location — dictated that she would move to Houston to live with her 89-year-old mother. Two siblings live near their mother, two others live out of state.

“My one brother who lives here is not that kind of caregiver,“ Vivian explains. “He’ll clean up the yard or bring dinner, but doesn’t have the kind of time you really need from people.” Her sister lives down the block from her mother, but withdrew from the caregiving scene after several years as the primary point person.

Vivian tells herself that her sister really wants a separate relationship with their mother and that the bad feelings between this sister and her stem from a sense of no longer being needed. It’s created a lot of anger and resentment, but “couldn’t be further from the truth,” Vivian says. In fact, her sister is still very much needed.

Lack of Communication Stokes Conflict

Humans are storytellers by nature, says Halliwell. We set up narratives so life makes sense — A happened, so B happened, so C happened, and so on. When she and her colleagues queried 20 caregivers with siblings about their caregiving roles and relationships, the stories came gushing out.

Three major themes emerged: inequitable division of tasks, ideal versus reality,and interconnectedness (growth and challenges in relationships). Real life obstacles get in the way, and families do the best they can, but a lack of communication among siblings creates a lot of negative experiences, Halliwell found.

Like Vivian, many primary caretakers expressed disappointment with siblings because they thought they could depend on them more. On the flip side, less-involved siblings resented their brothers’ and sisters’ lack of appreciation for what they did contribute.

Some described tumultuous, declining relationships between themselves and their siblings, while others refashioned the dynamics into something more positive. One participant likened her family to “a flock of birds flying in a V formation” which not only saves energy and increases efficiency, but allows for the one in front to drop back when tired and for another to take the lead.

Caring as a Team

That’s similar to the relationship Barbara Glickstein has with one of her brothers. She says they’re a team who “have each other’s backs” as caregivers for their 92-year-old mother, who has dementia. Their mother is in assisted living, but Glickstein and her brother visit often. They also handle the finances, consult with staff and aides and take her to appointments and on outings.

“When one of us is busy with family stuff or on vacation, the other just steps in,” she says.

Their sister lives out of state and is in touch by phone, but only visits sporadically. “She’s got a family and it’s impractical for her to help; she’s got her own issues,” Glickstein explains. Another brother lives nearby and visits socially, but does no other caregiving, she says. “I don’t rely on him for anything.” She points out that the current relationships mirror the family dynamics while growing up.

Talk Early

Families should have conversations about caring for parents sooner rather than later, Halliwell says. Don’t wait until there’s a crisis like a heart attack or a fall to suddenly be thrust into a caregiving role, she advises. That’s often when unpleasant things are said and feelings are hurt.

If you’re already a caregiver, she suggests:

* Talking with your siblings and painting a clear picture. Let them know you need help managing if you’re the main person, or that you need a break and that someone else needs to step up.

* Being understanding of each sibling’s unique demands and schedules, their strengths and limitations. Many conflicts arise because siblings don’t take on the perspectives of their brothers or sisters.

* Being open and communicating what you can and can’t do, or where you feel you can best help. For instance, you might offer to help manage finances or deal with insurance if you have the expertise.

* Writing down your thoughts and stories, especially if you normally confide in a sibling and feel you can’t. It will help alleviate some of your frustrations.

* Taking time to care for yourself. Eat right, get enough rest, take a walk, go to a movie or go out with friends regularly.

* Communicating with your siblings if you’re not happy with your role or responsibilities. Don’t let resentment or anger build up.

“Whatever you can do will be helpful and beneficial,” Halliwell says. “Don’t put so much pressure on yourself to have that perfect, ideal caregiver scenario we see in pictures and movies.”

Be realistic and don’t just tell yourself stories to rationalize another’s behavior. Remember: your well-being is at stake, too.

© Twin Cities Public Television – 2017. All rights reserved.

“Where Is the Line Between Caregiver Stress and Burnout?”

This is one of the best articles I’ve read on the line between caregiver stress and caregiver burnout.  And it’s short!  The author is Carol Bradley Bursack, author of “Minding Our Elders” (www.mindingourelders.com).

Here’s a key excerpt:  “Being a caregiver for someone we love can be an honor, but letting caregiving become our whole life is unhealthy over the long term. Balance is the key to surviving and even thriving as we care for our loved ones. Taking steps to limit stress can help us find that balance.”

The article addresses how to recognize when we may be crossing the line burnout:

* “We ask ourselves about our attitude toward our care receiver.”

* “[We] listen to our friends or others who care about us.”

* “We ask ourselves if we can occasionally feel happiness and/or joy.”

The article also describes how to avoid burnout and how to take better care of ourselves as caregivers.

Here’s a link to the article:  (Note that there are ads on the webpage.)

www.healthcentral.com/article/where-is-the-line-between-caregiver-stress-and-burnout

Where Is the Line Between Caregiver Stress and Burnout?
Carol Bradley Bursack / @mindingourelder, Health Guide
Health Central
Published On: Apr 10th 2013

“I can’t be ON all the time” (Caregiver Space)

This blog post to the Caregiver Space from February 2017 is about a caregiver who learned that she can’t be “on” all the time in caring for her husband.

She started off by thinking:

* “When my husband first got sick, it felt good to be needed”
* “Constant interruptions were scrambling my brain!”
* “I didn’t even say the word ‘no’ but I still felt so guilty!”

She realized she had to “learn how to take care of both [her husband and herself] without burning the candle at both ends.”

She was able to get her life back by pushing her husband to do more for himself. She says: “I started asking him to see if he can do things on his own. And he could. It was hard at first, but it was a fun challenge for us to do together. … As I pushed him to do more for himself, he also started to interrupt me less. … Now we have a system that I check on him at regular intervals.”

I don’t know if this approach will work for everyone; I guess it depends on how significant the needs of your care recipient are. But it sounds like good overall advice.

Robin

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thecaregiverspace.org/i-cant-be-on-all-the-time/

I can’t be ON all the time
by Sara Waltrip, Guest Author
Feb 13, 2017
Caregiver Space

Being a 24/7 caregiver means there’s someone who needs you 24/7. But I’m learning to accept that it’s just not possible.

Believe me, I tried. For the first few months I was unstoppable! Any time Joe needed me, I was there in an instant. It didn’t matter what I was doing, how tired I was, or how many other things needed to get done.

And then I couldn’t do it any more.

I started to slow down. I started to get sick all the time. I started to get angry. There used to be two of us in this marriage and it felt like now I was all alone, responsible for both of us. I felt bitter and trapped. That’s not the person I wanted to be. I don’t blame Joe for getting sick, but I also couldn’t cope with how much our lives had changed. I wasn’t angry at him, but I was angry and I was taking it out on him.

Something needed to change.

I can’t make him not sick. The doctors can’t, either. I needed to stop hoping for a miraculous recovery and accept that this is the situation I’m in and it’s not going to change. I can be wonder woman for a little while, but I can’t keep it up forever.

I was going to have to learn how to take care of both of us without burning the candle at both ends.

Joe is a grown man, the type of guy who never stopped to ask for directions or get help from anyone. He was a real independent, take charge kind of guy. I loved that about him. He took care of me all the time. I really leaned on him for a lot of things. At first, when he accepted that he needed to let me help him, I felt empowered. I finally got to return the love and care he gave to me all of those years. I could show how strong I really am. After a while, it got harder. I started to resent how much I was doing for him. While he leaned on me for a lot, I know he didn’t like it.

Step one for learning to do this long-term was pushing him to do more for himself. I can wait on him hand and foot when he’s having a particularly bad day, but not every day. There are certain things he can’t do for himself and that’s fine. But I realized I was babying him. There’s more that he can do than he’s doing. While he’s learned to let me do things for him and expects me to do things, he doesn’t like it any more than I do.

I started asking him to see if he can do things on his own. And he could. It was hard at first, but it was a fun challenge for us to do together. For a few months we discovered that he could do a little more for himself each day. Then we hit a plateau and it was frustrating, but that’s okay. His condition isn’t getting better, so now we know the maximum he can do on a good day and on a bad day and everything in-between.

As I pushed him to do more for himself, he also started to interrupt me less. Some things need to be done right then, it’s not optional. Other things can wait. He’d been interrupting me to ask for help for things that weren’t urgent and I was letting him.

Now we have a system that I check on him at regular intervals. He knows the longest amount of time he’ll have to wait before I’ll be there with him again and he can decide if he should call me in before that.

I can’t express how much this has improved our lives. He feels more independent. I feel more independent. And I can finally get things done. I had no idea how much trying to juggle a dozen tasks at once with constant interruptions was scrambling my brain!

Now some days I can do the stuff that needs to get done, from start to finish. When I hear him call for me I know it’s because it’s important.

I feel like I have my life back.

At first I felt like I was really letting Joe down by saying no to him. I didn’t even actually say ‘no’ and I still felt so guilty! But then I saw how happy it made him to get back to being the sort of guy who didn’t need someone else’s help all the time. We’re both so much happier now.

There are still bad days. It’s still exhausting. But now I know I can keep doing this. I could never stop being Joe’s caregiver — now I know we can keep this up, til death do us part.

A story about how grieving begins “with the knowledge of our mortality”

This is a very sweet story by Caroline Wellbery, MD, a friend of mine for over 30 years. I don’t think the article is well-titled. It’s more about stages of grief and how grieving is different with different people.

Here’s a link:

www.washingtonpost.com/national/health-science/we-unplugged-my-father-from-everything-as-he-wished-but-i-wasnt-ready-to-let-go/2017/06/02/69ce7b4e-1bcc-11e7-855e-4824bbb5d748_story.html

Health & Science
We unplugged my father from everything, as he wished, but I wasn’t ready to let go
By Caroline Wellbery
June 4, 2017
Washington Post

Robin

“The Emergency Medical File Every Caregiver Should Create”

AgingCare.com suggests every caregiver develop an emergency medical file for the care recipient and include these nine items:

* medications list;
* allergies list;
* list of doctors, including primary care physicians;
* general info on serious medical conditions and history;
* do not resuscitate order or POLST (Physician Orders for Life-Sustaining Treatment) form;
* medical power-of-attorney document;
* most recent labs;
* copies of all insurance cards; and
* copy of photo identification

This article suggests giving the packet of info to paramedics responding to 911 calls. Not sure if that’s good advice. Definitely bring the file to the ER or urgent care clinic. And make a copy of the file for adult day programs if the care recipient attends a program often. Probably makes sense to have copies in several places.

Here’s a link to the full article:

www.agingcare.com/Articles/the-emergency-medical-file-every-caregiver-should-create-428239.htm

The Emergency Medical File Every Caregiver Should Create
By Ashley Huntsberry-Lett
AgingCare.com
5.17.2017

Robin