Archive for the ‘ Eldercare ’ Category

When I became a Family Caregiver, one of the first things I noticed about caregiving was that many sacrifices are made in order to provide effective and compassionate care to our loved ones.  I also noticed that many Family Caregivers were providing this care alone, thereby compromising their own wellness.  In time, the “cost” of caregiving solo is evident physically as well as emotionally & socially.  Some ways to prevent this downslide is to reach out for help, to put to good use the resources that exist, and to assert our need to take care of ourselves.

To this end, Sherri Snelling, renowned caregiving expert, author, advisor & voice for Family Caregivers, writes about an affordable, practical way to bring Peace-of-Mind to a caregiver’s world.

To help Family Caregivers take a break – and to set them on their way to wellness – CareLinx is offering                        4 hours of FREE IN-HOME CARE!                        [Scroll to the end for details!]  Thank you, CareLinx!

Make today the first day of a better caregiving tomorrow!

Thank you, Sherri, for your insights and support of Family Caregivers!

THRIVE not survive

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Are You Thriving or Just Surviving As a Caregiver?  The Peace-of-Mind CareLinx Offers Makes In-Home Care the Answer

by Sherri Snelling (see short bio below)

In the U.S. today, more than 65 million are playing the role of family caregiver. But as many caregivers know, this role is a marathon not a sprint, and survival – or, better yet, thriving as a caregiver – means finding the best help at the best price.

While AARP reported that 89 percent of Americans over age 65 want to remain at home as long as possible, the Centers for Disease Control (CDC) found 7.6 million Americans who have a chronic illness or have been discharged from a hospital after an acute illness are being cared for at home by a family member. Often, caregivers suffer from burn-out trying to juggle all the responsibilities of family, career and caregiving without getting a break for self-care.

The solution is to seek help but there are two hurdles for most caregivers: 1) The options for in-home care are numerous so it’s time-consuming and difficult to know where to find a trusted service; 2) Often caregivers find their parent is unhappy with the professionals being sent from an agency and so an endless parade of in-home caretakers becomes another challenge to caregiver peace of mind. Finding that perfect match that offers quality in-home care at an affordable price is a challenge, but it can be done.

One company has the answer.  CareLinx emerged about five years ago and has become the nation’s largest online caregiver marketplace. Building a professional caregiver network of 150,000 serving 1,500 families a month in the top 50 metros across the U.S., CareLinx offers family caregivers three key things when it comes to in-home care: Confidence in trusted quality care, cost savings and most importantly choice.

CareLinx

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Choice

Perhaps the most unique aspect of the CareLinx service is that both the families and the care professionals get to choose each other. This partnership begins online at the CareLinx site. If a family caregiver goes through a traditional in-home care agency, the family can provide criteria but typically the agency will send the care professional that is available, not necessarily the best match. At CareLinx, the choice is yours – for the family caregiver, the care recipient and the professional caregiver.

CareLinx acts like eHarmony to find the perfect professional caregiver match for in-home care whether it’s meal preparation, light housekeeping, bathing and dressing, help with mobility or medications and companion care. If your mom only speaks Spanish, likes Mexican-style cooking and needs help bathing which needs to be a female caregiver, CareLinx offers families the choices in the area to fulfill those specific needs.

The family can review the backgrounds of each professional, check their hourly rates, coordinate a telephonic or videochat interview and decide which professional caregiver is the best fit. And, as opposed to traditional agencies who typically require a 3-hour minimum for the care service, you can have a CareLinx professional come for just an hour if needed. CareLinx also offers a Care Advisor via a toll-free number. Family caregivers who have questions or need guidance can get this extra help.

At the same time, the care professionals have a choice as well. CareLinx becomes the professional caregiver-equivalent of LinkedIn with a platform to connect with clients easily. CareLinx also handles all the time-consuming paperwork – including invoicing, payments, handling taxes – and provides the care professional with liability insurance.

In the end, families and the care professionals come together through mutual agreement and CareLinx reports this results in lower turn-over rates and higher satisfaction for both families and the professional caregivers.

CareLinx Mobile

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Confidence

For many family caregivers, one of the drawbacks to bringing personal care help into the home is the issue of safety and security. The horrific headlines in the news about elder abuse, identity theft and other “care scares” is enough to make some family caregivers take on the extra 20+ hours a week and perform the care needs themselves. This can lead to stress and burn-out for the family member.

CareLinx sets itself apart by giving families the peace of mind they need. CareLinx care professionals are backed by liability insurance from Lloyds of London – what CareLinx calls its $4 million SafeGuard Policy. In addition, CareLinx has done most of the legwork for caregivers – performing exhaustive background checks, ensuring professional credentials for care workers and requiring ongoing quality reports from its clients.

In addition, CareLinx professionals check in with the family members daily to let them know important activities of their care service. The CareLinx professionals send photos and other data via smartphone communication with clients. It’s peace of mind to know dad ate his lunch with no complaints or mom was able to get out and walk a bit with help. The family member gets real-time updates right on their phone.

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Cost savings

Most importantly, CareLinx saves families money while paying professional caregivers a higher wage. Traditional bricks and mortar in-home care agencies have retail stores with overhead costs and tend to charge 50-150 percent to cover these costs while keeping professional hourly rates low.

With CareLinx, families save 30-50 percent because CareLinx is an online platform to find your care professional. No stores. No large marketing budgets. In addition, CareLinx provides rates next to each professional listing showing the professional’s credentials to justify the rate and typical rates for that service in the local area. Armed with that information, families and care professionals negotiate the rates between themselves – CareLinx does not get involved.

On average families across the nation can spend on average $45,760 per year for in-home non-medical care according to Genworth’s annual Cost of Care Survey. Saving on these costs helps families who often struggle to pay for personal care services not covered by Medicare (Medicaid may cover some services but it varies state to state).

CareLinx only adds a flat 15 percent fee allowing it to save families overall costs and letting professionals negotiate the wage they feel is fair.

We’re entering a new era of caregiving support and services. CareLinx is one of the leaders that provide on-demand, safe, affordable in-home care choices – the new way for family caregivers to ride the silver tsunami of having older parents at home who need our care.

Special offer for Caregiving Cafe Readers:

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Click on this link by July 31, 2016: CareLinx and receive 4 cost-free complimentary hours of in-home care from CareLinx.

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About Sherri Snelling

Sherri Snelling is CEO of Caregiving Club and author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care and she writes on caregiving for PBS Next Avenue, Forbes.com, USA Today and Huffington Post. She was the chairman of the National Alliance for Caregiving and has served on advisory groups for the White House Middle Class Task Force on Caregiving, CMS, AARP as well as for companies such as CareLinx.

BLOG Sherri Snelling

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Disclaimer: Sherri Snelling is a paid advisory board member of CareLinx. While her strategic counsel, spokesperson and other duties are paid by CareLinx, Sherri Snelling is not paid for clicks or links such as an affiliated marketing arrangement. While Sherri Snelling provides her opinion of CareLinx, she does not guarantee the quality and satisfaction of the CareLinx services experienced by individual CareLinx client and thus, disclaims any liability that may result from your involvement with CareLinx.

 

 

Asking for help is one of the hardest things to do for many family caregivers – and I’d venture to say for many people in general.  I’m not sure why this is the case when we are all in the same boat.  Everyone needs a hand with this or that now and then.  It is ok!

Willem O’Reilly, Alzheimer’s family caregiver for his wife, shares a story about how he learned this important lesson.  But please, don’t wait as long as he did!

Thank you for your insights, Willem!

QUESTIONS ANSWERS

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Need Help?  It’s There for the Asking

Last night I spoke on a panel of caregivers at the facility where Molly lives.

We had a list of questions that covered many fundamental issues that affect all caregivers for dementia patients.  They ranged from “How did you handle the diagnosis?” to “What has been most helpful to you as a caregiver? Most helpful to your loved one?”

Many of the responses sounded familiar.  For example, taking away the car keys when the Alzheimer’s patient can no longer drive safely is always challenging.  As one panel member related, even if the person has not driven in a long time it is dangerous to leave the keys where he might find them.  He might one day decide to drive to the store and wind up in the neighbor’s yard.

Some stories were more unique.  The wife of the other man on the panel was diagnosed with early onset Alzheimer’s in her fifties.  Her husband pretended that he was having memory problems in order to get her to a doctor for evaluation.  The doctor played along and examined both husband and wife together.  Randy’s strategy worked for a very difficult situation. 

One woman couldn’t answer the diagnosis question because she wasn’t involved in caring for her mother early on.  Her father took care of his wife at home for years until he himself became ill and passed away.  My fellow speaker had to take over and start learning herself what caregiving is all about.

I listened and told mine and Molly’s story.  I had planned ahead of time to speak mostly about self-care.  I wanted to emphasize strategies that had helped me cope.  One is meditation.  The teachers I learned from practice “insight meditation.”  In this style, one calms the mind by focusing on the breath.  Then one observes what comes up in the body and the mind. 

MEDITATION

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This proved to be a wonderful approach for me in dealing with the painful emotions of grieving.  Eventually, I got to the place where I recognized feelings as they arose.  “Oh, yes, here’s anger back again.”  “This is sadness; I’ve felt like this before.”  The great benefit of this practice for me was that I came to understand that the uncomfortable, unpleasant feelings come and go.  They don’t last forever: they arise and they cease. 

This, then, was to be my lecture topic for the evening.  Of course, it didn’t turn out the way I planned.  The format included multiple questions with responses from each of the five panel members to each question.  There wasn’t time or space for Professor O’Reilly to deliver a lecture on meditation, or any other topic.

NEED HELP?

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So, I focused my responses on a much simpler self-care issue:  asking for help. 

As the oldest of fourteen children, as an adoptive parent to three children from the third world, as a community college professor teaching freshmen students still living at home, and as a caregiver for Molly, I was well versed in the hero role.  I took care of everyone.  I was competent.  I was good in a crisis.  I was always the responsible adult in the room.  And, I did almost all of it on my own.

I never learned how important it was to ask for help until I was forced to do so.  For me, that was when I got cancer and had to have surgery while I was a full-time caregiver for Molly.  After the surgery, there were days when I couldn’t get out of bed.  I couldn’t take care of Molly.  I needed help, and the only way to get it was to ask for it.  I did ask, and people stepped forward willingly to assist me and Molly. 

My experience with caregiving and Alzheimer’s has taught many things, but two conclusions seem especially important.  We are stronger than we believe ourselves to be.  We are never alone. 

I have been helped by family, friends, neighbors, public servants, and complete strangers.  At first I was surprised by how willing people were to help me and Molly.  Later, I concluded that the vast majority of people are kind and generous.  Help is available on all sides. 

The trick is to learn to ask for it.  I learned in a pretty hard way, but I did learn.  It was one of the great lessons of my whole caregiving experience.

WHAT DO I DO NOW

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ABOUT THE AUTHOR

Willem O’Reilly is a freelance writer and a caregiver for his wife Molly, who has Alzheimer’s.   Willem has been a college professor, a grant writer, a real estate broker, a photographer, a diversity trainer, and a business consultant.  He and Molly raised three adopted children from the Philippines, who are all in their thirties now.  Willem’s anticipatory grief journal has become the basis for a forthcoming book What Do I Do Now? A Caregiver’s Journey with Alzheimer’s.

Willem O’Reilly’s book What Do I Do Now?  A Caregiver’s Journey with Alzheimer’s is now available on Amazon or by order at your bookstore.

Siblings

 

 

 

 

 

 

 

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(From the beginning, my sister, my brother and I have focused on our beloved carees: first our father, then our mother.  I believe that this is the key to successful caregiving.)

The conversation at Caregiving Cafe support group this past week gravitated toward siblings who don’t help with caregiving for aging or fragile parents. Unfortunately, this is a common situation that is hard to comprehend and harder to live with.  Despite the difficulties that surface, however, solutions DO exist!

Unresolved issues from the past – perhaps filed away in our memory bank so securely that we may have forgotten about them – have a way to sneak up on us and make us re-live those moments of intense emotion and pain.  Or perhaps the wounds never healed at all and remain fresh with hurt, anger or resentment.  They say that we are the sum of our experiences, and those experiences may have steered us away from the closeness and mutual appreciation that family once provided.  As we lay our course through adulthood, we create new associations with whom to travel, adjusting them as life moves us from place to place or from circumstance to circumstance.  Family ties can be weakened or broken unless diligent care is taken to preserve and to strengthen them over years of change.

The initial presumption would be to count on siblings coming together to tend to parents as their health declines.  Not necessarily so!  For the reasons above and for many others that remain inexplicable, the sad truth is that many siblings are left caring for one or two parents on their own.  Some are fortunate enough to get support from 1 or 2 brothers or sisters, with whom care is reliably coordinated.  Many family caregivers, however, cannot count on this support.

So what can a family caregiver do to enlist the help and cooperation of siblings?

Several attendees talked about how they had dealt with their less-than-helpful siblings.  As one of our resourceful caregivers said, she decided to spend her energy on managing the tasks at hand rather than to continue to envision a “perfect” scenario where her sibs would lend a hand – and be disappointed by the reality that they weren’t. She decided to take charge & to coordinate efforts with the sister that did help, rather than to continue to ask for assistance that never came.

 

CEO of CAREGIVING

 

 

 

 

 

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[This coordinating of help is what being the Caregiving CEO is about!]

Another family caregiver got the go-ahead from her father to hire a caregiver as needed and to purchase items that helped with his care.  She was lucky that another sibling spoke up for her when justification was required by the rest of their brothers and sisters.  She decided that whether her sibs liked the idea or not, she was okay with that.  It was their problem if they didn’t agree, not hers.  I would add that if someone is not helping with caregiving and is simply criticizing without any basis, then he/she has no understanding of this particular caregiving situation; therefore, he/she has no say in the matter.  I might even suggest that the caregiver ask the critic, “Would you like to do it next time and show me a better way?”

Other caregivers had siblings who paid for caregiving needs when they couldn’t be or chose to not be there in person.  While the ideal is for all family members to come together for the sake of the loved one, reality can make this a challenge.  A phone call or a letter, funds to pay for a sitter / equipment / supplies / respite / groceries / medications are welcome alternatives.  The vision of a perfect caregiving situation can do more harm than good, especially to the family caregiver.  It is best to be realistic and to accept the help that is given, instead of measuring how this help compares to an unattainable ideal.

I encourage family caregivers to ask for help from relatives, friends or neighbors without expectations.  [Have your list of tasks handy for when they say yes or offer to help!]

But as a fellow caregiver pointed out, we don’t know what our relatives / friends may be dealing with that keeps them from helping.  Whatever the reason, it behooves us to accept – not necessarily to like, but to accept – the fact that they won’t help and to create a new “caregiving family” who will support us in caregiving.  Maybe not easy, but doable…and necessary.

Let us also forgive those whom we feel have not supported us when we needed them.  The animosity or exasperation that we may feel will eat away at us over time and make it a burden with which to contend. Forgiveness allows us to move past hostility, indignation and suffering.

 

FORGIVE

 

 

 

 

 

 

 

 

 

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From: Forgiving the Undeserving

“…a bitter spirit, like cancer, penetrates every part of our life.  Anger and resentment are symptoms that cannot be pushed away and ignored.  They spill out, harming relationships and leading to risky decisions.

Withholding forgiveness may feel like we are punishing the offender.  But people cannot take revenge on one another without destroying themselves.”

Ephesians 4:30-32

 

We have to work with what we’ve got.  Let’s focus our energy on finding ways to manage our situations, using resources, creating a care team that supports us, and moving forward.  Let’s not allow the frustration / anger / hurt that stems from lack of familial support to interfere with accomplishing what we need to.  It is emotionally draining. Use it instead as fuel to find a path toward your goals!  [If it helps…remember that what goes around, comes around!]

We, as primary family caregivers, are responsible for the care our loved ones receive.  We do the best we can under the circumstances.  Give yourself credit for ALL that you do & have confidence in your abilities!

 

Below are some articles about siblings & caregiving:

Getting your siblings to help with caregiving

Sibling Rivalry: The Challenges of Caring for Elderly Parents

Out-of-Town siblings may feel shut out of caregiving

What to do when siblings can’t agree on a parent’s care needs

Top 3 Excuses from Siblings Who Don’t Help with Caregiving

“Each caregiver has to know when to fight, and when to give up the battle and move on. There is no right or wrong time. It’s up to you.”    Carol Bradley Bursack

 

 

Kevin O’Brien’s film, THE TRAIL, is an account of his father’s “journey into dementia” and serves as a stage on which the observer can see the varied sides of caregiving.  Every person faced with this insidious disease, whether as patient, family caregiver, relative or friend, is forced to make choices about how to deal with the changes and challenges that it brings.  Kevin illustrates how he and his family chose to face dementia and how each member found a way to move forward.

Thank you, Kevin, for sharing your story through this interview and through your upcoming film.  We wish you the best and look forward to seeing THE TRAIL and your future films!

 

KEVIN OBRIEN & FATHER, MICHAEL O'BRIEN

Photo:Connor O’Brien

 

Q: What prompted you to film in general and to create THE TRAIL in particular?

A: I needed to articulate the manifestation of my father’s dementia and the way in which it had affected our family. The film is not a documentary. Instead, the film replays key events in my father’s dementia during the course of a family hike. A fictional short film based on my life events allows me to condense many years of experience into the course of a day’s outing. Viewers will be presented with an abbreviated but not diluted look at what dementia is.

 

Q: Surely caregiving has affected your family & you.  How has it affected your relationship with your father, your mother and your brother?  Will your film illustrate these changes?

A: Dementia has debilitated my father, stripping him of the ability to provide me the affection, support, and guidance that he once did. My mother, brother, and I have had to unify to provide care for him and ourselves. This unification has reinforced our relationships. The Trail will visualize the ways that my father’s dementia forced us to become the givers of care instead of the recipients of it and how that brought us closer together.

 

Q: How has talking with other family caregivers and organizations affected your views of caregiving?  What surprising lessons have you learned?

A: What surprises me are the points of commonality that I identify between my own experience and the experiences of other caregivers. My father’s psychotic break was very unique and was focused on his specific paranoid delusions. However, I hear the same words he screamed in the stories that other caregivers have shared with me about their loved one’s psychotic break.

 

THE TRAIL: DAD

Photo:Connor O’Brien

 

Q: What roles do you see or would like to see family and friends playing in caregiving situations? How will THE TRAIL encourage family and friends to carry out those roles, given your experience and your conversations with other caregivers?

A: The Trail will conclude with the father’s two children beginning to carry him off the trail and across a seemingly endless expanse of mountains. Those images will communicate that the caregiving experience is a protracted one that is best navigated with support from friends or family.

 

Q: How do you and your brother take care of yourselves?  Your film can voice the difficulty in practicing self-care, but also provide some realistic options to do it.

A: My brother is my best friend. We practice self-care by expressing the respect and love that we feel towards one another on a daily basis. Once we were sibling rivals. An antagonistic relationship sustained by my intense jealousy of Connor. All of that had to fall away as my father’s illness progressed. Through open and honest communication, Connor and I have built a new brotherhood.

 

THE TRAIL: MOM AND DAD

Photo: Conner O’Brien

 

Q: Have you and your brother accepted help from relatives, from friends or from outside support?  If not, why not?  (These are some of the roadblocks that we must overcome in order to lighten the load of caregiving.)  Has the support that you’ve needed been available to you? How did you become aware of resources?

A: My mother, Sandra, serves as my father’s primary caregiver. We have divided the days of the weeks between the three of us, providing care in shifts. It is difficult for me to imagine providing care without the presence and support of my brother and mother. My extended family visits and provides monitory support. Both of which are appreciated.

 

Q: Where and when do you think is/are the ideal place(s) and time(s) to learn about caregiving resources and support?  Will THE TRAIL offer these suggestions?

A: The time to learn about caregiving resources and support is now but first audiences need to be introduced to what dementia is. Until my father’s diagnoses, I was ignorant of what dementia was. My hope is that, audiences will understand how dementia manifests and how it can affect a family, long before they are forced to educate themselves.

 

Q: What do you hope to tell the world & family caregivers through your film?

A: The world will be getting a nuanced look at exactly how dementia manifested within my father’s mind. Concurrently they will witness the evolution of my friendship with my brother Connor. Between those two arcs will also exist a testament to the good man my father was and the Greek levels of tragedy that his loss represents to me. Caregivers will be left with an empathetic story that utilizes the vastness of nature to articulate the massive scope of their undertaking.

 

THE TRAIL: DAD

Photo: Conner O’Brien

 

Q: Where and when do you plan / hope to show your film?  Will it be available for the general public to see?

A: The Trail will first be submitted to every applicable film festival with the intention of securing distribution. The goal is for the film to be seen by as many eyes as possible. When I have exhausted every effort to have the film distributed, I will situate the film on established internet channels to be freely shared.

 

Q: What are your plans for the future regarding film?

A: My wildest dream is to write, produce, and direct feature length films that tell stories as personal to me as the story told in The Trail. Closer to earth and the present, my brother and I are currently in the planning stages of a series of short documentaries focusing on different aspects and stages of our father’s life and illness.

 

Q: Anything else that you would like to say?

A: That caregivers should know that the sadness, frustration, and anger they feel is warranted. However, within the struggle that is caregiving, I have found purpose in life, a new respect for who my father was and who my mother is, and my best friend Connor.

 

 

 

BIO

Born in 1989, Kevin O’Brien enjoyed 20 years in a healthy home, under the wing of his parents Sandra and Michael O’Brien. In 2009, at the age of 61, his father was diagnosed with early onset frontotemporal lobe dementia. As the year passed, Michael’s cognition decreased, and the caregiving responsibilities Kevin shared with his brother, Connor O’Brien, and his mother, increased. Those years also saw Kevin graduated CSULB with a degree in Political Science, work four years at the public affairs firm GrassrootsLab, and leap into the entertainment industry with a contractual position at NBCUniversal. Kevin now spends his time looking for his next professional avenue and working to produce The Trail, a short film that seeks to chronicle the period of time between his father’s diagnosis and his 5150, a psychotic break that his father experienced, one that required his medication and sped his need for round-the-clock care.

CONTACT

Name: Kevin O’Brien
Phone: 562.256.5874

 

PARTNERS

 

 

 

 

 

 

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Family caregiving is a multi-faceted partnership.  All parties involved in the treatment and care of a person need to work together for the sake and benefit of the caree.  It goes without saying that family caregivers must take a proactive stance with all medical professionals in order to be fully informed about their caree’s condition and to be able to provide the required and optimal treatment.  Discussing health or behavioral changes, new symptoms and general observations with doctors and therapists helps the latter to stay updated and to fine tune treatments as needed.  Learning from the pharmacist or from the doctor how and when to take medications enhances the chance of obtaining the desired results and avoiding the negative ones.

However, just as important – and perhaps even more so – is the partnership between the family caregiver and the patient.  Without the cooperation of the caree, caregiving can become a much more difficult experience for everyone involved.

Our caree’s cooperation is essential in caregiving

When my husband Seth became ill with CRPS, he remained in charge of his own health.  However, we discussed treatments, medications, procedures, home modifications, diet, non-caregiving tasks, etc. before taking action.  We weighed pros and cons.  We looked for ways to overcome obstacles as mobility became increasingly limited.  As new symptoms appeared and biological changes occurred, we tried alternatives that would accommodate those changes.  (For instance, becoming nocturnal as a result of his biological clock going awry led to daytime sleep and nighttime wakefulness; his sense of taste “detecting” flavors that were not there led to eliminating from his diet foods that were no longer palatable.)

We agreed to look for ways to help Seth feel as comfortable as possible given the intense pain.  We agreed to give those alternatives a chance with an open mind.  Not every change worked, so we searched for other options and settled on practices with which we could both live.  I continue to carry out tasks in a manner that does not cause him additional pain and allows him to sleep.  (I cannot vacuum his carpeted room because the vibrations from the motor cause additional pain.  So I sweep and dust.  He no longer tolerates fish, seafood, garlic or certain grains – so our meals do not include them.)

 

Taking medications

 

 

 

 

 

 

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Seth has chosen to be an active participant in his treatment.  He does all he can for himself, takes his medications as his doctors ordered, and is always aware of the “work” that his disease has created for me.  His regard for my wellness is as important to him as his own. He offers ways to simplify my tasks, to help me stay organized (via technology), asks how I am doing and expresses his gratitude daily.  Our partnership in caregiving minimizes the stress and frustration that often surface in scenarios where the caree, for one reason or another, does not collaborate.  Perhaps the need for acceptance of the disease or condition precludes this collaboration.  Rather than fight it, my husband and I have accepted the fact that CRPS will be part of our world and choose to focus our energy on living.  Unless a cure is found during his lifetime, we remain ever hopeful.  Until then, we remain partners in caregiving!

 

How to encourage cooperation from your caree

Communicate – talk to each other about your day, your thoughts, your feelings…good and bad

Respect each other – treat each other as adults, with dignity and respect

Empower – remember that WE have choices and have the power to be proactive about our own health

Be positive – even the darkest moments have a gift for us; look for the tiniest glimmer of positivity and you will find it.  A lesson to learn for the future can be a source of strength.

Gratitude & Appreciation – acknowledge what you do have and be glad it hasn’t been taken away from you

Perspective – life is a challenge, puzzle, mystery, game of chance, adventure; caregiver & caree can work together on each hurdle.

 

Perspective

 

 

 

 

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Humor – at the lowest points, we have actually laughed because we never knew moments could be so ridiculously miserable.  From this, a deeper bond was formed from knowing we had each other on whom to lean.

Love – let love lead your actions: it turns chores into kindness!

Education – learn about the illness or condition and how it will affect the body, behavior, abilities

Empathy & Tolerance – try to imagine how you would feel and act if you had your caree’s condition / limitations / loss of independence.  Remember that he/she may experience symptoms or emotions that may be difficult to verbalize, and can be perceived as “behaving badly.” In actuality, they may be a sign that your caree is experiencing pain, discomfort, is fighting infection, anxiety, frustration, anger, grief…  Please discuss these with your caree’s doctor if they last more than a day or so.

Don’t force issue unless it’s urgent/poses danger – Consult with the doctor to see if the issue can wait to be addressed.  If it can, drop the subject and re-visit later issues with which your caree disagrees or is uncomfortable.  Keep in mind that as adults, carees have the right to follow doctors’ orders…or not.

Care, not cure –  As family caregivers, this is our role. We are not [always] miracle workers…but angels, always!

 

I had the good fortune of meeting former family caregiver Margaret Sheehan quite serendipitously. She happened to attend a Caregiver Workshop at AGE of Central Texas in Austin and left a copy of her new book with Rob Faubion, Marketing and Outreach Manager.  He was nice enough (and clever enough to see a great opportunity to bring a bit of inspiration and support to the family caregivers in Caregiving Cafe’s support group) to tell me about her book.  I contacted Margaret and we met to discuss her caregiving experience, along with her sister Helen and her husband John.  All 3 had worked together to support Margaret’s and Helen’s parents – a lovely symphony of efforts that would be ideal to see in every family.

Thank you, Margaret, for sharing your insights with us.  I hope family caregivers put her tips to good use, as they will help to make the caregiving path more bearable. She is living proof that they worked!

For caregiving support, information, resources and caregiver workshops in the greater Austin area, please contact AGE of Central Texas.

 

HOW HARD COULD IT BE - MARGARET SHEEHAN

 

 

 

 

 

 

 

 

 

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How Hard Could It Be?  A Caregiver’s Story           by Margaret Sheehan

 

Your story – how did caregiving begin?  How long did you do it?  What conditions were you managing?

PART 1:  Caregiving began with a medical emergency, so there was no advance preparation or training.  Mom had a 50/50 chance of surviving serious complications from a standard surgical procedure to remove a benign brain tumor from behind the base of her nose.  Inevitable swelling of the brain made the doctor question whether she would survive or be herself after recovery.  No family members lived close to my parents at their retirement home.  I took a plane to be with Dad and spent six weeks helping him with driving, paperwork, shopping, emotional support and providing updates to family.

In addition, I buffered Mom’s experience in the hospital.  After all the tubes had been removed Mom still needed help with eating, staying oriented to the present and minimizing her concerns about Dad.  After my sister was able to stay longer with our parents I returned home.  My sister stayed another six weeks helping them transition from hospital care to home health care.

Medical personnel ultimately considered Mom a little miracle because she eventually recovered her speech, her personality, and her ability to walk.  Mom had no memory of my time with her.  After I returned home I wrote her a detailed letter telling her all about it.

PART 2:  Three years later I relocated close to my parents and orbited them like a planet.  For sixteen years I lived separately but near to them.  That caregiving experience gradually evolved from mutual care to an uneven role where my parents saw me as their primary caregiver responsible for increased decision-making and oversight of their care.  Then for four more years they lived with me and I became their full-time primary caregiver with help from aides and finally Hospice until their deaths at ages 93 and 95.

Dad suffered TIAs, small cumulative strokes that made speech difficult and left him with mild dementia and sundowner’s syndrome (at night he experienced another world and became more active).  Dad also had a catheter for about three years, a tendency toward constipation, age-related diabetes, failing eyesight, and minor difficulty walking due to childhood polio.

Mom was surprisingly healthy during those years, although in the past she’d had a mastectomy for breast cancer.  Her brain surgery only left her with a tendency to blurt out comments she might have self-screened before the procedure.  Overall she remained sweet, friendly and reserved.  She had bunion surgery, a minor procedure on her eyelids and two problems with her heart that made surgery impractical.

She often worked easy crossword puzzles until they became too difficult as her sight weakened.  But she was able to enjoy television – old-time shows that she never minded repeating.  She had normal age-related memory lapses such as increased difficulty identifying people on the Christmas mailing list.  As her memory diminished she grew quieter and smiled rather than partake in conversations around her.

Overall, I think they both were comfortable and happy.  They weren’t thrilled with aging but they did so with grace.  For example, at the appropriate time they each made the decision on their own to stop driving.

 

How did you approach this new role?

I jumped in, ready or not, here I come!  How hard could it be?  I intended to learn as I went.  At the beginning of the book I described a time when I accidentally ended up lying on the floor with Dad sitting, squatting on top of me, straddling me.  I felt that after we resolved that fiasco we could deal with anything, come what may.

 

What 3 things helped you cope/manage caregiving?

Trust in God, family, and good health.

 

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What would you say to new and to existing caregivers now?

Take care of yourselves.  Make that a priority so you can be effective with what you are trying to do.  Seek the professional help that you need.  And communicate, communicate, communicate – with concerned others and with the person for whom you are caring.  Never presume that because you go through something together you each have the same understanding of what is happening.

 

How do you cope with loss during and after caregiving?

During caregiving I coped with loss through humor.  We laughed a lot.  It gave us the illusion of control, and acceptance about our lack of control.

After caregiving it was a comfort to me to have done all that I could.  Toward the end of my book I described taking my unfinished business after my parents’ deaths to my church’s sacrament of reconciliation.  I confessed my sense of fault over what I had done and what I had failed to do.  For my penance that blessed elderly visiting priest with an Irish brogue told me to return to my pew and to say six times, “All is forgiven.”  I hope to give a similar sense of peace to people dealing with caregiving decisions.

Now, I still talk to my parents.  I know they weren’t comfortable with their disabilities in their final years.  I’m grateful they were able to have the last sacrament.  I’m glad to think of them as having peace.

 

How did you deal with the changes in roles and relationships with your parents?

I just accepted the gradual changes that occurred.  I never challenged, deflected, or questioned this.  If they could have acted differently, I know they would have.

One day my Mom greeted me at their door as I was in the habit of visiting them after work.  She said, “Daddy threw up blood in his (TV) chair and is lying down in the bedroom.”  In the past Mom would have called the doctor rather than wait for me.  After that I knew I could not take for granted what they would do.

 

Did you seek and accept support from family, friends and community?  Did you have to wrestle with the idea that you “should” do things on your own?

Family did not live close, but when they visited I tried to point them to things that they could do.  This was good for all of us.  Caregivers have to let go of trying to do everything, especially when others want to be involved too.  But people who don’t live close usually arrive two steps behind no matter how well you’ve tried to communicate with them before their visit.  They have to catch themselves up and may need time to do so.  They will probably need your help to know what to do when they’re ready.

Also I asked one of my brothers to help me fund a regular housecleaner for our parents and he was glad to do so.  Later my parents attempted to live in an independent/assisted living facility.  It did not work out for them and I discussed that in my book — but that’s well worth considering.

 

How did your parents cope and manage their role as patient & caree?  What did you do to support them emotionally?

They worried about burdening me.  From the beginning we acknowledged that we were supporting each other.  I had just gone through a divorce when I moved near to them.

For many years I sought out activities that I enjoyed such as career studies, involvement in Community Theater, church choir and for awhile singing voice lessons.  I kept myself happy so they worried less about me.

To support them emotionally I just kept up with them and affirmed what they could and could not do.  I accepted them as they were.  I offered another pair of eyes and helped them to set boundaries.  For example, we gradually limited out-of-state travel to care for my father’s older sister. We helped settle her into a local nursing home.

 

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What prompted you to write a book and how did you get started?

I had started journaling during the years when Dad and I had precious conversations in the middle of the night due to his sundowner’s syndrome.  At the time I did not want to forget those talks.  After sharing those notes with family members, I expanded them into a book.

I wrote the book because I thought I could help others by talking about caregiving experiences that took me by surprise.  Many aspects of caregiving had taken me by surprise!  I thought maybe I could help others feel better prepared for caregiving than I had been.

For me personally, the book project also became a healthy avenue for closure.  It became a tribute to my parents.

 

What did you do to take care of yourself?

I got as much sleep as I could.  I let other family members help me as much as they were comfortable.  I laughed often.  I used myself as a barometer and checked anger to make sure it didn’t get out of hand.  When I found myself getting angry at family or my parents, it was a clue that I needed to make a change – usually to seek another level of professional help.

 

What do you think would be an effective vehicle to spread information about caregiving resources?

Your Caregiving Café is a wonderful service on the internet.  I am a dinosaur about this media, but it’s much needed.  I’m also impressed with the networking efforts of AGE of Central Texas.  To spread information about such resources, I suggest reaching out to parish nurses and ask them to inform people via their church bulletins.  In the Catholic Church, it might also be useful to talk to personnel at the diocesan level and ask how best to inform others.  There is a very good diocesan monthly newspaper.

 

Anything else you want to say to family caregivers or to family & friends?

I don’t believe I could say too many nice things about Hospice!  These professionals were wonderful to us in my parents’ final year.  It’s not giving up for a caregiver to involve Hospice when your doctor agrees it’s time.  And death doesn’t have to be absolutely imminent to receive excellent help.  Hospice care is another positive step toward making sure your loved ones are cared for in the best way possible.

Finally, do all you do with love.  That’s what gives you strength and endurance.  Love is what brings you a lasting memory with comfort and peace.

 

 

How Hard Could It Be? A Caregiver’s Story           Available on    Amazon  or  Barnes & Noble

About the author

Margaret Sheehan earned a master’s degree in theology from Loyola University, Chicago, Illinois.  She has worked in university and business contexts as a typist editor, and organizer.  For seven years Sheehan worked in Catholic parishes as director of religious education and facilitator of special events.

 

 

In-home care services

 

 

 

 

 

 

 

 

 

 

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Caring for our loved ones when they have a chronic condition, when they require extra attention as a result of advanced aging or when a family caregiver needs respite can lead us to consider hiring home care help. How do we select home care help and make sure that our loved ones will continue to receive compassionate, respectful and appropriate care?

Carol Marak, an older adult and family caregiver advocate, shares some tips to help families find and select competent and supportive home care.

Thank you, Carol, for your great tips!

 

 

How to Select Home Care Help

Adult children and seniors must learn how to read the ratings of home care agencies prior to hiring a home helper.

The CMS, Centers for Medicare and Medicaid Services, created the Five-Star Quality Rating System to guide consumers when comparing and selecting a home care agency.

Most states do not require home care agencies to have a license or to receive certification. But if a home care agency offers home health, like nursing care, then the company must follow applicable laws, regulations, and state compliance issues.

Even though you’re hiring for in-home care and not home health care, CMS suggests that consumers should follow the same requirements and ask questions designed for the Five-Star Quality Rating System. Learn how Medicare measures the quality of data. 

 

Check the Qualifications of the Caregiver Agency

Here’s a list of the questions to ask a home care agency when you are ready to hire a professional caregiver.

1.  Does the agency have a state license? If one exists, request to read and review it.

2.  Does Medicare approve and certify the home care firm? Remember, only home health care agencies, the ones offering nursing care, will receive Medicare certification.

3.  How does the care company hire and screen the staff?

4.  Ask for client references. Ask for a list of physicians, discharge planners, and geriatric care managers who have worked with the agency.

5.  Ask health care professionals, family members and friends for professional caregiving recommendations.

6.  How does the care company train the caregivers?

7.  Does the agency staff receive continuing education? If so, what kind of training?

8.  Are the staff supervised? By whom?

9.  What factors evaluate the home care helper?

10.  What is the improvement program?

11.  Do the agency’s employees seem friendly and helpful? Make sure you feel comfortable with the agency’s representatives.

 

Caregiver Training

 

 

 

 

 

 

 

 

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Questions to Ask about the Caregiver

1.  Does the caregiver/home helper have a proper attitude?

2.  Is the home help aide friendly?

3.  Are you comfortable with the caregiver?

4.  Is the care aide certified?

5.  Is the caregiver insured?

6.  Does the assistant receive ongoing training? If so, what kind and what topics?

7.  Does the helper receive continuing education?

 

Types of Services Given by a Home Care Company

1.  Will you receive a written care plan before service begins? Make sure the doctor gets involved.

2.  Obtain a copy of the patient’s bill of rights.

3.  Will a nutritionist, dietitian, counselor, therapist or another specialist be referred if needed?

4.  How does the care provider include your family members and health care providers?

5.  Are limits set on the types of tasks performed?

6.  When will service be provided? Is care available round-the-clock, when needed?

7.  What procedures are in place for emergencies?

8.  How are problems addressed and resolved?

9.  Whom can you contact with requests, questions or complaints?

10.  When can services begin?

After you hire a home care company, stay on top of the services they give and monitor closely. If concerned, discuss it immediately with the agency or home health aide.

 

About the author

Carol Marak is a contributor for the senior living and health care market. She advocates older adults and family caregivers by writing on tough topics like chronic issues, senior care and housing. Find her work at AssistedLivingFacilities.org and HomeHealthcareAgencies.com and contact Carol on LinkedIn and Carol@SeniorCareQuest.com.

 

Medication safely online

 

 

 

 

 

 

 

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I recently learned about a great way to safely purchase medications online & now share with you the NABP information that was conveyed to me.

A new domain, .pharmacy, is now available and awarded ONLY to a website that has been carefully reviewed, is “legitimate and operating legally and meets standards set by a global coalition that includes International Pharmaceutical Federation (FIP) and NABP, which has supported the United States boards of pharmacy in their goal of protecting the public health since 1904.” .

From now on, “the .pharmacy domain [can be seen] as a secure and trustworthy destination where consumers around the globe can be sure they are buying medications from legitimately operating online pharmacies.”

As a family caregiver, you know how important medications are to those in your care and the ease of shopping for them online; however, it’s important to know that not all online pharmacies are legitimate. I would like to let you know that the National Association of Boards of Pharmacy (NABP) is spearheading an initiative to identify credible online pharmacies: a new website domain, .pharmacy.  To further help you spot questionable websites, below are tips for recognizing a fake online pharmacy, as well as the dangers associated with medications purchased from rogue sites.

Not all websites that sell medications are created equal. Some operate illegally and may sell counterfeit or falsified drugs and devices, putting your safety, health, and personal information at risk. Some websites even sell fake medicines that contain rat poison, glue, chalk, and other toxic fillers! Other websites do not secure your payment and personal information, leaving you vulnerable to identity theft. Can you believe that some sites even take your money without providing any product, or automatically enroll you in pricey refill scams?

 

Spotting illegitimate online pharmacies

Websites with any of the below characteristics might be selling prescription drugs that are counterfeit, contaminated, or otherwise unsafe.

  • No prescription required
  • Prescription based solely upon online questionnaire
  • No phone number or street address
  • No pharmacist consultation
  • Limited medicines
  • Spam solicitations

 

Do not fall victim. Without a doctor’s prescription or a pharmacist to answer your questions, you also increase your risk of misdiagnosing an illness or experiencing serious adverse reactions with your other medications. To help consumers see through the rogue sites, NABP continually reviews websites selling prescription drugs to determine if they are safe. Of the over 10,800 Internet sites reviewed, NABP has found that nearly 97% of the sites fall in the Not Recommended category because they appear to be operating in conflict with U.S. pharmacy laws and patient safety standards.

The good news is that with the launch of the .pharmacy domain, you can feel confident that you are receiving safe medications when you are purchasing from a website ending in “.pharmacy”.

 

Family Caregivers can help each other stay safe!

  • If you attend support groups, please share this important information with your fellow family caregivers.  Tell your friends and family as well.
  • If you have a blog, please share information about the launch of .pharmacy domains with your readers.  Passing along good tips and resources helps caregivers and carees to make this journey a little smoother.
  • Feel free to share this information with Twitter & Facebook friends: “Safely buy prescription drugs online at .pharmacy website domains http://bit.ly/1BFegTw

 

To find out more about buying safely online, please visit: safe.pharmacy.

We are in this together!  Let’s help each other keep our loved ones and ourselves safe!

 

 

Cost of Long-Term Care

 

 

 

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I met Carol Marak a couple of weeks ago, delighted to find out that we both live in Austin!  She has experience providing care to her parents and now focuses on writing on topics relating to senior care, their long-term care, and aging & health, among other pertinent subjects. Carol presents useful information and resources that help both seniors and family caregivers to find sensible options in order to ensure that elder loved ones receive the support they need.

Thank you, Carol, for sharing this informative post!

 

 

Know the Costs of Long-Term Care

Families need to know the cost of long-term care, no matter what stage of care your aging relative needs. Once a family member begins to search for costs, you’ll be surprised how widely varied the prices are even within a city.

The costs fluctuate by level of care. For example, some assisted living homes offer nursing help and nurse supervisors for the staff, while other establishments do not. The first clue is the level of care. Another way to look at it, ask if the community offers a social environment or a health care environment. The health care environment charges more than a social one.

Nursing care is costly.

Types of long-term care:

  • Home Care
  • Assisted Living Facilities
  • Independent Living Homes
  • Skilled Nursing Care
  • Adult Day care

 

How to Evaluate Long-term Care Needs

First ask, how much care does my loved one need? Expand your view from the present moment to a year or two from now. Why? Because if a relative has a chronic condition, their health care needs will change over time. You can count on it.

Although each family situation is different, here’s a quick way to start the evaluation on how much care a relative needs.

 

How Frail and Weak is the Person?

  • Is the caree slow to recover after an illness? If so, the caree needs extra help.
  • Does the caree have frequent falls and accidents?

These apply to bodily harm and car accidents. Progressive chronic illnesses take a toll of the body, too. They affect strength, recovery, and wellness. Does the caree need help with dressing, shopping, cooking, house chores, managing medications, toileting, making appointments?

 

How physically stable is the caree?

One’s changes in weight points to improper nutrition or a chronic condition and can affect one’s mobility and balance. Is the person stable and well-balanced or does she need to hold onto furniture for balance?

 

How active is the caree mentally?

Watch out for missed social engagements and doctors’ appointments, they could be signs of depression or forgetfulness. Does your loved one feel hopeless? Is there a change in sleeping patterns or lost interest in hobbies?

 

Pay attention to changes in health or medical signs that prompt more care.

For example, if a caree forgets to take prescribed medications, it can greatly affect their health. Many seniors take multiple prescriptions for various chronic conditions. Keeping track is vital.

Read the full list of What Type of Care is Right for Me?

 

The cost of senior care varies significantly between facilities and agencies across the nation and even within the same city. Families can search on their state and city to compile a list of long-term care options and their costs: Compare Senior Care Costs.

These costs are taken from The Genworth 2012 Cost of Care Survey and it gives the most comprehensive list and costs of 15,000 care providers. When pricing out facilities and home care be sure to ask for the base price quote as well as a complete estimate of ALL services included while requesting information from ANY residential care, adult day care or home care agency.

 

 

 

About the author

After seven years of helping her aging parents, Carol Marak has become a dedicated senior care writer. Since 2007, she has been doing the research to find answers to common concerns: housing, aging and health, staying safe and independent, and planning long-term.

 

 

Relaxed holidays

 

 

 

 

 

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It’s December!  Does the mere mention of the word “holiday” make you want to scream like a goat?  You are in good company!  This season of merriment tends to create exactly the opposite of what it’s meant to: a sense of Peace.  Why, then, does our life become a blur of overcommitments, over-indulging and frazzled nerves?

Let this year be different!  I have gathered a few articles that provide tips on managing stress during the holidays – not only for family caregivers and healthy people, but also for seniors and for those who live with health issues. Especially when we are responsible for the wellbeing of loved ones, it is doubly important to keep stress to a minimum, as they sense our own stress and react to it. That unease and agitation may be stemming from a family caregiver’s own anxiety!

Some highlights from the articles follow:

Stress Management

1.  Recognize and accept feelings that are less-than-festive.  You can’t make yourself feel happy.

2.  Plan ahead to optimize your time for all activities and minimize last-minute rushing around.

3.  Practice patience & tolerance; take friends and family as they are and don’t let them spoil your holiday.

4.  You don’t have to accept every single invitation.

 

Holiday stress tips

 

 

 

 

 

 

 

 

 

 

 

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Celebrating with Loved Ones in Nursing Homes or Assisted Living Facilities

1.  Sing old favorites.

2.  Bring treats from home.

3.  Avoid overstimulation for your senior.

4.  Balance home life and attention to other family members with nursing home activities.

 

10 Ways to Keep Holiday Traditions Senior-Friendly

1.  Pick a time for activities that is suitable for your aging loved one.

2.  Offer to do some holiday shopping or writing cards if these have become difficult tasks.

3.  Use technology to “visit” with relatives and friends who live far away, make a video or “face time” online.

4.  Go for a ride to enjoy the holiday lights and decorations.

 

Christmas kindness

 

 

 

 

 

 

 

 

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For me, the holidays are a time to celebrate the good in the world, to gather with “people who are dear to us,” to think beyond our own personal universe and to let out our inner humanitarian.  They are a time to appreciate the people in our life and to make note of how we enrich each other’s existence by showing kindness, respect and open-mindedness.  Holidays remind us to renew our commitment to goodwill – something that merits frequent practice all year long.

Caregiving makes you take a new look at life and re-evaluate what’s truly important.  At the end of the day, you’ll treasure a moment of genuine joy more than a “thing” received.  A gentle hug, a flash of lucidity, a song sung with gusto by an otherwise quiet and distant relative, holding hands with someone in too much pain to hug you…

Let us focus on the people who are special to us and to make them feel special through our actions.  Your time is a precious and irreplaceable gift that no other can duplicate.  Give a hug.  Cherish the moment.  It’s guaranteed to lower your stress!

 

Happy Holidays!