Archive for the ‘ Information ’ 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.

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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.

 

 

Charles Mattocks’ current film project Trial by Fire’s photograph of a burning hand says it all: the burning pain that CRPS / RSD imparts on those who have been diagnosed with this uncommon disease. The irony is that while this burning hand paints a vivid, if not disturbing, picture of pain, the reality is that this pain cannot be “seen” in the persons who live with it.  This makes it difficult for people – and doctors – to understand or to believe that it exists…That is, unless you catch a glimpse of the grimaces that escape when the intense pain becomes intolerable.  I have seen it: my husband was diagnosed with this infernal disease and has not had a pain-free minute in 7 years.

Trial by Fire tells the story of a man’s journey helping his mother to live with CRPS / RSD.  One of the goals Charles has is to increase awareness of this debilitating and crippling disease so that it can be successfully treated.

A heartfelt Thank You, Charles, for your grand efforts to voice the needs of the CRPS / RSD community and for your insights!

 

TRIAL BY FIRE

 

 

 

 

 

 

 

 

 

TRIAL BY FIRE

 

INTERVIEW

What prompted you to film in general and to create TRIAL BY FIRE in particular?

My mother was diagnosed with CRPS a few years ago and I wanted to do something to help her.  I recently lost my father out of the blue to cancer and I saw my mother going down hill.  I didn’t want to lose her as well. I also started to do my research on the condition and my heart was moved by the stories. I am an advocate for diabetes so this comes naturally when it comes to wanting to help people. I also have diabetes and I know the ups and downs. I have a strong faith in God and feel it’s my purpose to help people. I was also inspired by my late uncle, the reggae legend Bob Marley, to help others and seek to give back. We are here only a short time and we must leave something.

 

 

Surely caregiving has affected you and your family.  How has it affected you, your relationship with your mother and other relatives?  Will your film illustrate these changes?

Do the best I can with her: I go and cook for her and clean up the house; I help her soak her feet, that seems to give her some relief. I think she also needs someone to talk to and some comfort; when I bring my kids over it takes her mind off of the pain for a short time. She is older and dealing with this condition alone can be like a death sentence. Yes, the film will show some of these changes; it’s also a bit hard because she is older and somewhat stuck in her ways. So she’s not that easy to help at times.  I think she is now starting to open up to change. Like many, she is also stuck with what can be paid for by some insurance company and that’s not much. So she has done a few things that I felt were only going to make things worse and all about the money. Rest assured that’s what took place; it made things worse and cost a lot of money!

 

 

What caregiving challenges have other CRPS or Diabetes family caregivers mentioned and how have you overcome your challenges? Have you found caring for both diseases to be very different?  What surprising lessons have you learned?

Diabetes is another monster in itself, I deal with more type 2’s than type 1. The issue is that it’s a lifestyle condition and they don’t feel the conditions.  Unlike CRPS, you feel the pain and if you could just eat right to stop that type of pain I am sure everyone with the condition would eat Green grass if that’s what they had to do! Diabetes is not the same and the support I get is not the same.  In a short time, the people with CRPS have opened the doors for me. I have been able to get scores of emails and calls from all over the world so the immediate satisfaction makes this all worth it. I have learned many lessons: I have learned that I can’t give all of my soul for others but do what I can to make what impact I can. I stay up way too late and work too many hours trying to find a way to help the people and beat the machine of the big drug companies. But I can’t do that alone and at times I feel like the battle is of no use. But I won’t stop fighting and I won’t stop pushing.

 

 

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

… and they love to do it.

I have seen from CRPS the role of family is key; I have seen parents taking care of their 50-year-old children. I wonder at times if something was to happen to me who I would have. My father just passed and my mother is sick, so I pray that I never have this condition. Family and strong friends are key, but family is the most as friends may have their own lives to live and you will only be left with a loving family to care for you. Diabetes is a bit different, as this slowly catches up to you. The way you manage diabetes is very different and that’s why I think when it comes to type 2, there is not much by way of sympathy because people feel that they have chosen to be this way.  In many cases, their lifestyle truly has. I think what we will show in the film is that being a solid unit is key and that all we have at the end of the day is the ones that gave us life or the ones that we grew up with.

 

Charles Mattocks, World Advocate for Diabetes,       Family Caregiver

 

How do you take care of yourself, especially now that you have been diagnosed with Diabetes?  Your film can voice the difficulty in practicing self-care, but also provide some realistic options to do it.

I have changed my life in so many ways!  I preach mental, emotional and, of course, physical change. I would like to think I live what I share and hope others follow my lead. I feel as if I can do it, you can do it!  If I can lose the weight and eat right, then you can also. As you know, there is no quick fix but life is too precious to not live all of it or live it sick by my own doing. CRPS is another dragon and I can only pray and hope that there is some solution or even some more funding for the people. We live in a country where we should not have to live in this type of pain due to not having insurance cover the cost of something that can help us. I hope we can march in Washington, D.C. and figure out a way to get some people help. When I think of the cost for some of the treatments but then think of what the medicines cost, these doctors are making a killing!  Some mark ups are like one thousand percent! I understand people need to make money but at the price of someone’s joys and hopes.

 

 

Have you 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.)  If you accepted help and support, how have you coordinated this help?  Has the support that you’ve needed been available to you? How did you become aware of resources, especially about reliable CRPS resources?

I had to get most of mine on-line or from my own thinking. Not saying that is the best way but I went back to what God gave us for my diet: I said water, fruit and veggies. I read a ton of stuff on-line and I was like none of this makes any sense, so I had no choice but to think of the simple plan. I didn’t have many resources, you would think with almost 400 million with diabetes there would be a lot more info. It makes you have to really wonder about the state of health. I still don’t have many places to send people who need help but billions are made and spent each day. I have found some great people in CRPS from reaching out. I was fortunate enough to meet an amazing lady named Nancy Cotterman and she has opened the doors for me to meet so many great people in CRPS. She has helped me meet doctors and those living with the condition, it has been amazing and has made this all worth it. I think with CRPS they need to know people like her that truly care and also suffer with the condition. I wish there were more people like her in diabetes and if there were, maybe we could help bring the numbers down. But I wish there was more help; I wish there were people that reached out to me.

 

 

Where and when do you think is/are the ideal place(s) and time(s) to learn about care-giving resources and support?  Will TRIAL BY FIRE offer these suggestions given the fact that CRPS is such an uncommon disease that most people have never heard of it?

We should learn about taking care of ourselves from a young age; if I would have known about diabetes from a younger age I would not have it now. I fail to understand why a course while in high school is not given on certain health conditions. I am not saying it has to be days of classes, but even a day or so of just overviews on certain diseases and conditions would do. That’s one reason I created my children’s book. I wanted to be able to enter into the schools and work with the parents and help educate [the children] from an early age. CRPS may not be one of those [diseases] that comes up at school, but we need the community to come together to get this message out so more people can truly understand. The movie will take the flow that the people who are in it bring to the film; I want it to be very generic and very organic. We will address certain things and I hope we can get as much as we can covered.  What we hope to do is open up the conversations. The great thing about this [CRPS] community is that it can get a voice.  Of course, I won’t please everyone and there will be ones that will say, “I wish he had covered this” or “Why is that not talked about?”  But at the end of the day, my goal was to get right what we are doing now, and that is talking about this condition and getting it out so others who are dealing with this can have a voice. I must say I am truly vested.  As I stated, I have met some amazing people and maybe it’s my curse of loving people, but I am so Happy to be part of this and my heart hurts with some of these stories.  Let’s see what the future holds.

 

 

What do you hope to tell medical professionals, the world & family caregivers through your film, and especially about CRPS?

I am hoping medical professionals will tell us something; I am hoping they will allow me to understand, and by me understanding, then those who see the film will also get the picture. I want to know why there is not more funding, why insurance companies don’t pay for the care, why this condition isn’t more well known, why does it seem like some are just trials for doctors to test new gadgets and tricks on. I am wondering why so many people go without being given the right diagnosis. So I am looking for the same answers that most are, I’m hoping that we understand what helps and what to stay away from. Hoping to encourage those who see no hope that there are groups and people to support them, and just praying that the film can inspire and bring the community closer together.

 

CHARLES MATTOCKS

 

 

 

 

 

 

 

Charles Mattocks’ The Budget-Friendly Fresh and Local Diabetes Cookbook

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

I will star in the film festival circuit. I feel we will do very well and win tons of awards around the country… and I hope the world! I will then use my contacts to get on the major shows that I appear on, such as Dr Oz, The Today Show, CNN and many more. Once we get it done and doing well we will get a ton of media coverage so I am not worried about that. My ultimate goal is to get CNN to pick it up and air it as some sort of special. We also have the option of on-line and many other venues. I am not shooting a full length feature because I am not sure we will have the funds, but we will shoot a great 30 to 35 minute piece that will make all proud!

 

 

What are your plans for the future regarding film and advocacy?

I hope to be embraced by the community like I am being now.  This does not have to be the last piece I do on CRPS. I am hoping to be able to tell many more stories and share the stories and air in other countries. I would love to be a face, I don’t have the condition but I can speak about my mother, the process of the film and the lives and stories that were touched. So I feel we have the making of something amazing!

 

 

Anything else that you would like to say about CRPS, Diabetes or caregiving?

We are the only ones that can make change! I don’t have the condition but I have been fighting and working nonstop day and night on this project. I need the support of the people, this is for the people and should be supported by the people. Let’s make a loud cry to the people and let them know that you have a voice and it will be heard!

 

 

 

MAKE A DONATION: TRIAL BY FIRE                 [Please click the title to make your donation via GoFundMe.com]

“’Trial By Fire’ is a documentary based on RSD/CRPS created by Celebrity Chef Charles Mattocks, as seen on CNN, Dr. Oz, The Today Show and many more mainstream media across the United States and around the world. Charles is also a best-selling author, World Diabetes Advocate and film-maker. Charles’ mother, who is the sister of the late legendary reggae legend Bob Marley, was diagnosed with RSD/CRPS about 4 years ago. Charles, who also recently lost his father from cancer, was moved to create Trial By Fire after seeing his father’s loss and wanting to help his mother who seemingly is at a point where he is in fear of losing two parents in a very short span.”

 

About Charles Mattocks 

Charles Mattocks

Charles Mattocks, The Poor Chef, World Advocate for Diabetes & Family Caregiver for mother with CRPS

 

Celebrity Chef & Worldwide Diabetes Advocate

“Each career move Celebrity Chef Charles Mattocks has made has been in keeping with his desire to touch lives in a positive way. Inspired by his uncle, the late reggae legend Bob Marley, Charles dared to dream big…His need to create meals that were tasty, nutritious, and affordable led to his career as “The Poor Chef”…Then came devastating news. Charles had type 2 diabetes…A tireless advocate for diabetics everywhere, Charles Mattocks, is determined to help stem the tide of this deadly disease…Charles has also teamed up with [Nancy Cotterman &] Dr. Hanna out of Clearwater, Florida, to work alongside him and his team to help the world understand what RSD/CRPS is and some of the many treatments that have changed the lives of many.”

 

 

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!

 

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.

 

Communication

 

 

 

 

 

 

 

 

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Effective communication is an essential skill in caregiving.  While we all write or speak to one another, we don’t always convey our intended message to others. All too often, family caregivers tend to refrain from coming forward with their requests for assistance.  Most likely, they have plenty to say – in their mind – but never get around to verbalizing their needs.  This lack of communication not only keeps well-intentioned and willing helpers from chipping in, but family caregivers can grow increasingly discouraged by the apparent lack of concern from family and friends.  At other times, our perspective and the language that we use to express ourselves may sideline what we truly feel or may mask the real issue that we need to address.

Joan Craven writes about interactions among people and presents practical steps to get our message across.  In her book, “GOT IT! 21 Communication Tips for Busy Impatient People,” Ms. Craven reminds us that we “are the boss of ourselves.”  We can choose to react negatively or we can choose to act in a constructive way to move past an obstacle.  She stresses how important it is that you “Think before you speak, be thoughtfully honest, and speak to others as you would a very dear friend.”  Effective communication allows you to “build relationships,” inviting partners to walk alongside you.

 

GOT IT! - Joan Craven

 

 

 

 

 

 

 

 

 

 

 

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“GOT IT!” is a concise and valuable book that family caregivers can use as a tool to build a supportive care team or to communicate important health issues to medical professionals.  With clear tasks and boundaries, everyone involved can focus on the chosen job and avoid misunderstandings or mistakes.  It also serves as a reminder that each one of us has the ability to choose the way we think – hopefully, it will be a belief system and proactive thinking that allow us to move forward beyond all obstacles.

I have highlighted below some of the tips in GOT IT! and hope family caregivers put them to good use.

*  Speak up – people cannot read minds

*  Use facts while using “I” messages, rather than using accusatory “you” statements  (You always…)

*  Be a good listener & focus on the person with whom you speak

*  Be kind to yourself so you can be kind to others

*  No could have & should have

*  Model how you want to be treated and what you will / will not tolerate

*  Set realistic expectations and achievable goals

*  You don’t need to do it all

*  Do what you can at the moment without guilt

*  Family caregivers are in charge of their own time – surround yourself with supportive people

*  Don’t procrastinate

*  Don’t worry about things you cannot control – let go

*  Don’t complain – choose words carefully, be positive

 

 

 

About the author

“With over 25 years of experience in the communications industry, Joan Craven has seen first-hand the devastating consequences of poor communication and the transformative benefits of strong interpersonal and organizational communication.

She believes that good communication is the ability to build strong relationships so people trust you, respect your opinions, listen to you and want to understand your point of view.”

 

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Disclosure: Joan Craven graciously sent me her book GOT IT! in hopes of providing family caregivers with an additional resource.  I encourage them to seek out the resources that will help them to better manage their caregiving and am happy to share GOT IT! with them.

Change will do you good!

BLOG CLINT EASTWOOD CHANGE

 

 

 

 

 

 

 

 

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“Changed for good.”

Wicked’s Elphaba (Idina Menzel) and Glinda (Kristin Chenoweth) sing about the positive impact that they have made in each other’s life.

“I do believe I have been changed for the better / …

Because I knew you / I have been changed… / For good.”

While we are influenced by people who make a significant impact in our life, change isn’t always the result of serendipitous encounters with certain people. Sometimes, it happens succinctly, without us giving it a second thought.  (Your favorite brand of coffee is sold out, so you buy a different one; or road work forces you to take a detour through an area you hadn’t explored before.)  We are comfortable with our current choices, so comfortable that we don’t even think about them and simply do them by rote.  (Ho Hum)  But isn’t it great to discover something new!  (Our brain thinks so!)

Is this how you feel about making changes?

 

 

 

 

 

 

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Sometimes, change is thrust upon us after a traumatic event – a car accident that leaves serious injuries and the need for a car, a new diagnosis or the passing of a loved one.  These changes can feel like someone pulled the rug from under our feet and can leave us scrambling for quick solutions.  In these instances, it makes sense to seek guidance from those who are qualified and informed.  They can help us to implement the necessary changes in a timely manner, but we must also adjust to our new circumstances.  This flexibility help us to become resilient, to bounce back from adversity, to move forward forearmed with the lessons learned through challenges, and to find a “new normal” in which to thrive!

A third type of change can be brought on by us.  It can be a deliberate choice followed by the actions that will help us to achieve those changes.  This is the kind of change that results from our mindful observation of a situation and from the desire to make improvements.

Change requires work on our part, an earnest effort, perseverance and patience.  The process itself makes us put into practice behaviors and mindsets that will help us to cope and to manage whatever crosses our path in the future.  Reaching our goals is the sweet reward!

I have borrowed highlights from “The Caregiver Helpbook: Powerful Tools for Caregivers” [from CaregiverU], added information I have read online, and drawn from my own experiences to put together a series of MAKING CHANGES WORKSHEETS PDF that can help you to identify obstacles in your caregiving and to find concrete ways to work around them.

Life itself is in constant flux.  No 2 days are exactly the same.  Our brain needs stimulation, our spirit needs inspiration.  While I agree with the old adage, “If it’s not broke, don’t fix it,” I do believe that upsetting the mundane applecart can recharge us, motivate us, let us enjoy more and live more!

For sure, if it is broke, do fix it!  It will be a “change for the good!”

 

Evolution of a Family Caregiver

YES...I am the BOSS!

 

 

 

 

 

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The past 7 years flashed before my eyes at our most recent Caregiving Cafe gathering in Austin.  I was delighted to see some new faces and, as always, equally so to see the familiar ones.  I am proud of each and every family caregiver who attends our support-group-with-a-twist, for this means that they are reaching out to find peer support, and seeking out resources and information that will enable them to be better, more effective caregivers.  They also put self-preservation into practice (physical, emotional, social & identity, as we are more than family caregivers), invest time in their own wellness, educate themselves about the conditions with which they deal, and learn about tools that will help them to manage it all.

As some of the caregivers spoke about their complex situations, I recalled the times in my early years when I felt I was being carried by the ominous undercurrent of a healthcare Amazon.  I followed procedures that everyone else involved in my husband’s health knew about, except for me.  I was only skimming the surface of this broad and deep river of forms and regulations.  While struggling to stay afloat, a fleet of larger vessels loaded with the other responsibilities that I had momentarily pushed aside to catch my breath, plus the new ones that had been added as I took on the new role of caregiver, quickly approached.  Sink or Swim?

 

Titanic

 

 

 

 

 

 

 

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I was moved by the compassion and support that the family caregivers offered each other.  What they had learned through trial and error, they shared in order to save others time and frustration.  I saw a wonderful coming together of separate individuals that now share a common destiny: caregiving.  I also saw how these selfless and devoted persons have grown in the few months that we have known each other.  They were strong when they came to their first meeting;  they are stronger now!  The information and experiences that have been shared by the group have helped many to develop ways to create a life that is more manageable despite the demands of caregiving.  Family caregivers supporting family caregivers.  “A sight for sore eyes to see!”

I encourage family caregivers to seek and to use local and online resources, to take charge of their caregiving by approaching it like a project for which they are the “Chief Caregiving Officer” [CAREGIVING AS A PROJECT], to use strategies that will enable them to succeed [BASIC STRATEGY], and to join support groups locally and online.

I no longer feel like I’m being dragged by the caregiving undercurrent, nor do I feel lost or overwhelmed.  I chose to look for those who could help me to do this job effectively so that I could focus on my husband and on my mother.  I chose to accept my role as a family caregiver, to create a life that is meaningful and rewarding and to encourage other caregivers to do so.  I chose to take a DEEP breath, to be proactive in my search for answers, to give myself credit for my abilities and to believe that I can do a good job.  In time, I learned more about caregiving and saw that many individuals did not always understand it.  I chose not to lose confidence in myself when people disagreed with my decisions.  I did not feel I needed to justify my actions or to try to convince others that those actions were appropriate.  I politely said that they worked in our specific circumstances and moved on.  You can’t force others to change the way they think, but you can change they way you think (and react)!

Caregiving can happen to anyone at any time.  When the time comes, how one approaches this great responsibility makes a huge difference in how well it is managed. Notice I didn’t say “controlled.”  Caregiving is truly like a river: constantly changing.

Set yourself up for success by: 

— Searching for information and resources

— Recruiting people who will help out as needed, whether it’s with a task or by lending a non-judgmental ear

— Joining support groups – each gathering has a different “feel” and can serve to gain different types of support, information on specific illnesses or conditions, coping skills, resources, fellowship, etc.

— Investing in your own well-being – a sick, exhausted or burned out caregiver is not a compassionate or effective caregiver.

— Choosing to swim!

 

 

PROGRESSIVE BLOG PART 2014

 

 

 

 

 

 

 

 

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I am thrilled to be participating for the first time in CareGiving.com’s Holiday Progressive Holiday Blog Party 2014!  What a golden opportunity to share insights, to learn tips, to “meet” and to support family caregivers everywhere!  (Then again, leave it to Denise Brown to dream up and implement fantastic ideas that enhance and strengthen the community of family caregivers!)

My personal mission at CaregivingCafe.com has always been to connect family caregivers to reliable information and resources.  Who better to provide tried-and-true bits of wisdom than another family caregiver?

In a nutshell, the Holiday Progressive Blog Party invites family caregivers to visit blogs that have been created by family caregivers or by groups that support them. Caregivers are encouraged to leave a helpful tip, a polite comment or well-wishes and inspiration.  It is a way to bring together family caregivers across the globe and to gain perspectives that may help in caregiving.  That’s it!

So feel free to peruse through CaregivingCafe.com and through this blog.  You will find a directory of links to trustworthy websites, organizations and information that will show you how to manage caregiving tasks, to deal with stress and negative emotions, and to take good care of yourself.

Thank you for visiting!  I look forward to learning, sharing and fostering mutual support – it takes a village to be a successful family caregiver!

All best wishes,

Lynn

(Family caregiver for my husband, who lives with CRPS; long-distance caregiver for my mother.)

 

 

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!

 

 

Crowded street

 

 

 

 

 

 

 

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The US is home to 65.7 million family caregivers [Family Caregiver Alliance: Selected Caregiver Statistics] and yet, one cannot single them out.  They look like everyone else: they have no obviously distinguishing features that set them apart from “regular” non-caregiving people. They blend into all sorts of crowds – at work, among friends, at Church or Temple, at the grocery store – seldom revealing any clues about their “other” life.

What exactly is a family caregiver?

A family caregiver is anyone who is responsible for the care of a loved one who is advanced in age, chronically ill or disabled.  The caregiver could be a spouse, parent, child, sibling, relative or friend.  While people are likely to assume this great responsibility as a “relative” or as a “friend,” they also become “family caregivers.” Acknowledging this additional role is important because many resources that exist to help and to support “family caregivers” may go unnoticed by those who do not see themselves as such.  Their work, then, can become overwhelming, which in time can lead to stress, exhaustion or poor health.

Family caregivers become advocates for their loved ones. They are their carees’ voice when they can no longer speak for themselves.  Seeing themselves in this light, family caregivers can more confidently discuss treatment options or concerns with medical professionals.  There is no doubt about whether it is appropriate to ask questions or to mention observations.  It is a family caregiver’s duty to speak up!

 

Are you a caregiver?

 

 

 

 

 

 

 

 

 

 

 

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What does a family caregiver do?

Everything and anything!  But not all at once!

When I stepped into the role of long-distance caregiver, I initially did a lot of researching about:

  • my father’s illness (multiple myeloma, renal failure)
  • treatments  (renal & cancer diets)
  • services (transportation, dialysis centers, home delivery of medications & groceries)
  • home care services
  • support for my mother (she had become Dad’s family caregiver)
  • rehab facilities (what they offered, how to pick a good one)

My brother and sister visited Dad in the hospital and rehab facility, helped him with grooming and personal hygiene when he became too weak to walk, and fed him.

Our mother took daily notes about all procedures, painful episodes, medications, treatments, observations and activities.  She remained at his side for the last 2 months of his life, keeping him comfortable, voicing concerns when she saw that he was not doing well and insisting on additional monitoring when his condition warranted it. She was a “family caregiver” in its true form without ever hearing the term.

When my husband became disabled, I used what I had learned from Dad’s experience.  I did my research once again and found ways to accommodate him so that he remained as self-sufficient as was safely possible.  This included finding appropriate furniture, electronic devices, utensils, foods, pill dispensers, mobility aids (canes, crutches, wheelchair and ramp), pillows, etc.

Dealing with paperwork was a new challenge.  Drawing a Will, Advanced Directives, Medical and Durable Powers of Attorney, finding the right health insurance plan, filling out forms for COBRA, for Social Security, for his Disability Insurance, and then providing yearly updates consumed quite a bit of time.  It was time well spent, however, as we ended up with great coverage and all agencies were very helpful when I asked for guidance. Medicare and Medicare Part D were another challenge that took time to comprehend.  I continually requested explanations and clarification (many many times) until I understood what the plans offered, and then selected the one that would cover the services that my husband needed then and in the foreseeable future.  I decided from the very beginning that if I was going to perform a “job” that I had never done before, I was going to educate myself by asking those who know about it.  This would not only make my job easier, but it would enable me to make informed decisions so that I could provide better care to my husband.

As his illness progressed, I looked for resources that could help him.  These included house calls by doctors and phlebotomists who would do blood work at home.  I even found out that Texas’ Department of Public Safety will come to your home to take a picture and to issue a Texas ID card in lieu of a driver’s license!  I also began organizing my husband’s 25 daily pills in a pillbox, cutting food into bite-sized pieces, picking up medications at the pharmacy and generally trying to keep him as comfortable as possible given his 24/7 pain.

 

Multitasking

 

 

 

 

 

 

 

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Keeping track of medical records, doctors’ appointments, nurse visits, medical bills, prescription refills and medication approvals required organization and monitoring.  Journaling observations on the progression of the illness, the success of the medications and treatments, the emotional wellbeing of my husband, and making note of research findings and new FDA approvals of medications that could be discussed with the doctor serves to document events that may prove useful to the doctors in the future.

Then, there is the non-caregiving side of a family caregiver’s responsibilities.  These are tasks that were once done by the loved ones who now need care and can no longer do.  They include paying bills, errands, cleaning house, chores, lawn work, home repairs, driving kids or teens to and fro, volunteering, etc.  Let’s not forget that about half of all family caregivers in the US are employed.  While the tasks increase, the hours in the day become short.  This is when family and friends can offer help and when family caregivers need to graciously accept that help.  Not only will the result be a grateful caregiver, but the caree will derive the ultimate benefit of having a compassionate and strong caregiver by his/her side longer!

What have I learned from caregiving?

When my beloved father passed away on April 3, 2008, life became clear and simple for me.  His passing highlighted the truly important things that we can easily fail to appreciate as we rush through our hectic agendas. Life is about people.  Give them love and attention while we are all on this Earth.  Like “The Living Years” by Mike and the Mechanics says, “It’s too late when you die… I just wish I could have told him in the living years.”  My cousin asked why people wait for funerals to gather. Let’s show the persons who are dear to us that they are dear to us!  Actions, indeed, speak louder than words!

 

 

 

 

 

 

 

 

 

 

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In caregiving, spending time with our loved ones is as important as carrying out all the required tasks. Spending time on ourselves – to nurture our own interests, to take good care of our physical and emotional wellbeing, to maintain the lines of communication open among relatives and friends – is imperative if we are to continue “giving freely” without resentment [Wendy Lustbader] and providing compassionate, effective care to our caree.

Caregiving has made me mindful of:

  • Appreciation for the love and support that I have received from friends and relatives
  • Gratitude for being able to take care of my husband – it just as easily could have been me with CRPS
  • Positivity and resilience, which have given me the courage to move forward past seemingly unsurmountable obstacles
  • Faith, which has reassured me that solutions await for me even when I cannot yet see them
  • The admirable strength of other family caregivers inspires me to continue on my caregiving path as an advocate for my carees, but also for family caregivers. They deserve recognition and support from the community for the work that they do. Who else provides free care 24/7?

In November, we “celebrate” Family Caregiver Awareness. Personally, I celebrate Family Caregivers! It is important to support them by offering to help with tasks, by visiting or calling, by giving them a day off. Family caregivers may not ask for help or may say that they don’t need it. But it benefits everyone, including their loved ones, to keep caregivers healthy, motivated and strong so that they are able to continue on their caregiving journey without needing a caregiver themselves.  On any given day, any of us could become a family caregiver or be in need of one.  It is up to all of us to support each other.

 

AGE of Central Texas

One of the ways that I have learned about the needs of family caregivers is through volunteering at AGE’s Caregiver Information and Resources Center for the past year.  I have taken many requests for help and resources, and seen first-hand how the services they provide help family caregivers and seniors.  I have also attended their Caregiver’s Circle support group, where caregivers share their days and lean on each other for encouragement.

AGE provides family caregivers with support on many levels:

* Adult Day Health Center – where seniors can socialize and spend the day in a safe and stimulating environment while they give their caregivers a break

* Early Memory Loss Program – activities for seniors & their caregivers

* H.E.L.P. – Health Equipment Lending Program lends free health equipment for as long as necessary

* Computer Lab – computer classes for seniors by seniors

* Caregiver’s Circle – support group for family caregivers

* CaregiverU – free evidence-based workshops for family caregivers

From one family caregiver to another, I encourage you to use the caregiving resources that are available to help you and to take care of yourself as diligently as you care for your loved ones.