Crowded street

 

 

 

 

 

 

 

[Image]

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?

 

 

 

 

 

 

 

 

 

 

 

[Image]

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

 

 

 

 

 

 

 

[Image]

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!

 

 

 

 

 

 

 

 

 

 

[Image]

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.

 

Connecting family caregivers to useful information and resources has been the mission of CaregivingCafe.com since its inception.  The obvious question for me – and for many businesses and organizations who strive to help this invisible army – has been, “Where are the caregivers?” The answer that I keep finding is that they are everywhere. Given the numbers that recent studies and surveys have come up with, we are talking about playing caregiving hide-and-seek with about 65 million family caregivers in the US, 15% of its workforce, and then some.  Why then, is it so difficult to find this elusive sector of our population?

 

BLOG invisible caregiver

 

 

 

 

 

[Image]

 

Several possible answers exist.

1.  Family caregivers do not identify themselves as such. They are daughter, sibling, spouse…and decide to take care of a loved one as part of that role’s responsibility or duty.

2.  Many family members and caregivers have never heard the term “caregiver” or may not realize that it refers to an unpaid relative or friend providing care for a loved one.  While most of the time I hear “caregiver” used, I also hear “care partner” and “care taker.”  The lack of consistency of terminology adds to the mystery.

3.  Some of the caregivers who do identify themselves as one do not admit the fact in the workplace for fear of repercussions.  Knowing that a caregiving employee may need to step away from work at a moment’s notice or to schedule a prolonged absence could negatively influence those who make decisions regarding promotions or involvement in collaborative efforts.  After all, colleagues and management need reliable co-workers in order to get the job done.  The 15% of the US workforce that is counted as a caregiver, then, could actually be considerably higher.  It’s hard to find those who don’t want to be found!

4.  Some family caregivers who know that they are performing caregiving tasks are wrestling with the role and they just don’t want the title.  They don’t want the responsibility but help out when no one else steps forward to pitch in.

 

BLOG elephant

 

 

 

 

 

 

[Image]

 

My husband and I have had numerous brainstorming sessions about ways in which we could try to reach caregivers in order to pass along useful resources.  But unless you can find your audience, the best plans will remain a hit-or-miss guessing game.

Then, last summer, I had an “Aha!” moment.  I know where the family caregivers are!  Just like in Edgar Allan Poe’s “The Purloined Letter,” the answer was obvious.  So obvious that the characters in the story completely missed the cues.

Family caregivers are at the doctor’s office, therapist, Emergency Room or hospital.  They are wherever their caree is.  Of course!  Whether a “family caregiver” has been designated upon diagnosis or not, a family member, spouse or friend who may end up being the official caregiver is there.  If another person takes on the role, then that person will accompany the patient or caree on future doctor’s visits at one point or another.  By definition, a caree needs to be taken care of by someone. Most likely, at any age, that caree will either be under a doctor’s supervision or see a doctor for check-ups.

So, why does this matter?  It matters because the doctor’s office, therapist, ER and hospital are the direct points of contact with family caregivers.  Because of this, they are the ideal way to connect caregivers with information and resources.

 

BLOG waiting room

 

 

 

 

 

[Image]

 

Wouldn’t it be wonderful if when your caree is diagnosed with a condition, you would get information about the disease or condition, instructions regarding treatment at home, information about medications – including possible side effects and how long until you see improvement – and what to expect during the next few months and down the road?  Wouldn’t it also be helpful to get information about organizations that know about the particular condition so you could contact them for education, guidance and support – and find ways to incorporate your new responsibilities into your already-busy life? Wouldn’t it be reassuring to know that other families are dealing with your very same situation and that you can turn to them for a shoulder to lean on via support groups (locally and online)?  Wouldn’t it be helpful to have an idea about the adjustments that will be necessary as a result of the diagnosis and about resources that exist to guide and to help you cope with the emotional & physical demands of this new phase?

I would have welcomed such support when my father was diagnosed with multiple myeloma and when my husband got his CRPS verdict.  My mother, who did not leave my father’s side for the last 6 weeks of his life, could have benefitted immensely from emotional support.  No one came forward to help her cope with the heartbreaking reality that was unfolding before her.  With only 5 1/2 hours’ warning, my father’s caregiving ended and our family was once again left scrambling for answers as to what to do next.

 

BLOG CG resources in office

 

 

 

 

[Image]

 

Things need to change!

By working together, all groups involved in treating and caring for someone can come up with a plan to inform and to support family caregivers that does not overburden anyone.  Doctors and other medical professionals need to focus on the patient.  Caregivers and families need instructions and information to provide the proper treatment at home (wherever home may be).  In addition, caregivers need to know about tools that will enable them to coordinate caregiving tasks (like getting organized in a way that works for caregiving, technology or websites), resources to provide appropriate hands-on care (like caregiving training or coaching, books, webinars, homecare agencies and access to social workers or case managers), tips on self-care and coping skills (like how to squeeze in activities to stay healthy, and ways to deal with the stresses and emotional toll that usually accompany caregiving – including support groups).

All medical facilities could designate an area for family caregivers where they could find brochures or information sheets about disease-focused organizations, helplines, websites, support groups, caregiver resource centers, social workers, case managers and many other caregiving resources that are available locally and online.  Caregivers could help themselves to the information that has been recommended by the doctor or medical staff.

In Austin and Central Texas, A.G.E. of Central Texas has a Caregiver Resource Center that provides seniors and their family caregivers with resources and support.  They are one phone call away…but only if the senior or family caregiver knows about it.  When a patient receives a serious diagnosis or has become frail as a result of advanced aging, getting the support and resources to manage the condition along with details about treatment and care would be a welcome, and sensible, gesture. Caregiving Cafe is another alternative for caregivers that puts information and resources at their fingertips.

Now we know where the family caregivers are!  Let’s work together to find creative, equitable and sustainable ways to deliver to patients and to family caregivers the information and resources to manage their health conditions.  Medical professionals and facilities are a crucial contact point that could be used to arm caregivers with the caregiving tools that will help them succeed!  I welcome your ideas.

 

AGE of Central Texas

Caregiving Cafe

 

Family caregivers can find a variety of support IF they know where to look or whom to ask.  Unfortunately, this help is frequently “hidden,” as resources are not always mentioned during treatments because they are rightly focused on the patient.  The challenge arises when the family caregiver is back home and needs to find a way to properly care for his or her loved one.  Because the attention is on the patient, as it should be, supporting the caregiver is not an obvious issue to discuss when dealing with the diagnosed condition.

Where does a family caregiver go for answers & support?

Matthew Morris, a social worker in New Jersey who runs CNA Career Agency, offers great tips to find free resources in your area.  Social workers are a fountain of information on useful resources that can help caregiving become a more manageable responsibility.  Thank you, Matthew, for your great suggestions!

 

 

How to Learn About FREE Social Services in Your Area 

Providing consistent and long-term support for an adult family member can pose unforeseen financial challenges, and while many people understand the emotional toll of caring for family members, few realize the tremendous economic strain that caregiving can create.

The following tactics are excellent ways to discover local resources that can ease your financial burden—and hopefully bring some relief to your wallet!

 

Find Services on Your State’s Website

People are often surprised to find that their state offers a wide range of free services. Type your state’s name and “homepage” into a search engine, and your state’s webpage should be at the top of the list. Navigate to the area for which you’re seeking services—even if it takes a little while to find what you’re looking for! Some state websites were created years ago and may be a little bit “labyrinthine.” Hang in there and keep looking!

Here’s an example: California offers a range of services for seniors and for caregivers, but their site is a little overwhelming. If you didn’t become well-acquainted with the site, you’d never find that they have a Department of Aging that list services and programs by county, or a Persons with Disabilities page that offers rehabilitation programs, developmental disabilities programs, and a variety of resources on special, alternative, and continuing education for those with different needs. It’s all there, but it’s a little hidden.

State agencies can help in a ton of different ways, and may provide assistance related to:

  • Family Consultations & Care Planning
  • Legal & Financial Consultation
  • Professional Training
  • Respite Care
  • Support Groups
  • Education
  • Counseling

The search can be frustrating, but worthwhile, as some states have agencies specifically for caregivers—such as this one in New Hampshire.

 

Go To A Support Group—But Not For The Support

Extensive research has shown that people who have emotional support from family and community members have better physical health and a more optimistic outlook. Support groups provide camaraderie and understanding that can make a huge difference in a caregiver’s experience (so contact your local hospital and find a support group!).

However, support groups also serve an overlooked function: they are excellent knowledge hubs.

In any given support group, there will be people in a situation similar to yours who have already maneuvered through the services maze. They’ll have insight on free vs. paid programs, agencies that can better your situation, and people to contact.

So, don’t be shy! Next time you’re at a support group—and you should be going to a support group!—ask other group members about the services they’ve utilized. You may find a free or low-cost program that makes a big difference on your financial responsibilities.

 

Utilize Groups That Don’t Quite Fit Your Needs

While it may seem counter-intuitive, programs that only tangentially related to your circumstance may provide services that can help.

For example, in New Jersey, the Mental Health Association in each county offers counseling services to persons who have an adult family member with a severe mental illness. The program is mainly used by parents who have an adult child with schizophrenia, severe bipolar disorder, or debilitating anxiety. But it is also utilized by people who have a parent with dementia or Alzheimer’s. While not the group’s primary function, caregivers in need of one-on-one therapy use the program for support.

When perusing your state’s website, take note of any agencies or programs that may seem related to your concern, and follow up to see if you can utilize them of get free services.

 

Talk to Social Workers

In his book, “The Tipping Point,” Malcolm Gladwell talks about the idea of “mavens.” The word refers to people who serve as information brokers, or, as he says, are “almost pathologically helpful.”

Social workers—particularly those with a master’s degree in social work—are mavens of public services. They’ve been trained to link community members with programs appropriate to their circumstance, and have at their disposal a vast network of state agencies and local nonprofits. If there’s a program that can assist you, a trained social worker probably knows about it.

There are two sites to find social workers: one here, and one here.

However, because most of the social workers at that website are licensed social workers and may charge a fee for their time, you can exercise a cheaper option and call your county’s administrative office. You can ask them to connect you with a social worker at any agency related to your issue (i.e., services for senior citizens, help for family member with mental illness, disability assistance, etc).

 

Do Some Online Research

Some nonprofits offer services that are unique to that particular agency. For instance, Elder and Adult Day Services in Seattle offers a program called “Destinations,” that provides three free hours of respite care to family caregivers one Saturday during every month. It’s not the answer to all your problems, but it’s a free afternoon to take for some errands, reconnect with a friend or family member, or spend some alone time.

 

Keep Looking Until You Find What You’re Looking For

As with all things, knowledge is key. Caregiving is a tremendously difficult task, and it is not meant to be tackled alone. There are free services out there—be sure you use them to your advantage!

 

CNA Career Agency

 

About the author

Matthew Morris is a social worker in northern New Jersey. As a mental health counselor, he helps community members attain social services on a local level, and he also runs the CNA Career Agency for individuals looking to start a nursing career in the healthcare industry.

 

 

“The only constant is change.” (Heraclitus, 535-475 BCE)  I find this to be true in caregiving every day.  While our family has a routine, it is one that remains flexible and open-ended.  Just like change has become an intrinsic part of our caregiving journey, so has creativity.  From the very beginning, my husband and I, not ever having heard about caregiving, put our heads together to find ways to keep him as comfortable and as independent as safety allowed. Equally imaginative, but with a wealth of knowledge and experience behind him, his neurologist applied the benefits of various medications to help correct my husband’s nervous system’s misfirings.  His outside-the-box thinking has helped to curb the spread of CRPS to the entire body.

Our unconventional use of conventional things has helped my husband and me to maintain a higher degree of independence:

—  his bed is actually a recliner that allows his feet to remain elevated at all times

—  his computer desk is an AirDesk set of pivoting shelves

—  his pillbox is actually a clear notions supplies box because he takes too many pills at too many different times each day to fit into the pillboxes I found

—  his magnifying glass is a hands-free needlepoint one

—  he shaves in his recliner with a wireless shaver that doesn’t make a mess

—  his ice water is kept cool in a tall thermal wide-mouthed bottle with a straw built into it and with a loop for easy pick-up

—  he is experimenting with software that types what he dictates

—  his neurologist has successfully used for CRPS some medications that are traditionally used to treat epilepsy, heart disease or baldness!

As his condition evolves, we find ourselves looking for additional devices to help my husband remain safe and independent.  Fortunately, I crossed paths with EasierLiving.com!  This website is well-organized, enabling the family caregiver to look for items based on condition or disease, on the affected part of the body, or by brand or product.  I was pleased to find a wide array of aids that make life much easier for the caree as well as for the caregiver!  This includes hard-to-find items such as toilet seats that are wide enough for men to use.  (I have found plenty of others that are too small to be used comfortably.)  They also offer ways to raise the height of the toilet seat for people who have difficulty with mobility or strength.

Among their foot care products, I found a “Showersafe” cover to keep casts or dressings dry during showers, foot rollers for plantar fasciitis and long-handled toenail clippers.  For the back, a “ShoulderBack” posture alignment aid would help us family caregivers keep our spine straight as we search for online caregiving resources!  Dining would be an easier feat using their mealtime starter pack, which includes chunky utensils for an easier grip and a non-slip placemat.  A leg lifter, pressure gloves and skin protectors would also come in handy for many carees. Something that I had never seen before is a pair of “Prism Spectacles (that) shift view to see perfectly even when lying flat!”  This would allow the wearer to read or to watch television when sitting up is difficult.

EasierLiving.com’s flat rate ground shipping of $9.99 brings all of these useful products to your doorstep. (Some items require a higher rate for special handling.)

Exploring through EasierLiving.com, I found information on the products to be clear and readily available.  Every link that I clicked on worked!  I especially liked being able to speak to a person who can advise on products during their business hours (Monday – Friday 9am – 5:30pm EST).

You can contact them by calling Customer Service, by chatting online starting around September 20, 2013, or by emailing them when you have questions.

An added bonus of visiting EasierLiving.com was reading their blog.  They have included several articles, not only on various conditions, but also on caregiving topics and wellness.  As a family caregiver, I appreciate having different types of information ready and waiting for me when I need them, for a change!

EasierLiving.com has products for the following conditions:

ALS, Alzheimer’s, Arthritis, Autism, Back Pain, Carpal Tunnel Syndrome, Hip & Knee Surgery Recovery, Incontinence, Obesity, Parkinson’s, Plantar Fasciitis and Stroke.

Keep in mind, however, that it’s worthwhile to explore products for conditions other than those with which you live.  You may find some useful aids for other ailments that you can incorporate into your routine to make life a little more pleasant with less effort.

EasierLiving.com has many products that help during many steps of our caregiving journey.  When life changes at the drop of a hat, it’s good to know that there is one place where you can find what you need.

 

 EasierLiving.com

 

(This article is sponsored by EasierLiving.com.  I will receive a product or service, or be compensated for creating this post, but strive to share information that will be useful to my readers.  I am disclosing this in accordance with FTC’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”)

 

Becoming a family caregiver can feel like being blindfolded and dropped off in a foreign country with no map or dictionary!  Illness and disability are often unfamiliar topics for many of us, so we may not even know what questions we should be asking or what information we should be seeking.  It is no surprise, then, that family caregivers may not be aware of the many resources, services and products that can help to make the caregiving journey less of a bumpy road.

Family caregivers need to know that assistance is available locally and online.  From adaptive furniture and assistive technology for mobility or vision impaired patients to in-home help for elders or caregiver respite, organizations and businesses can help to make caring for loved ones less complicated.

The resources below are just a taste of services, programs, information or items that can help family caregivers to accomplish their tasks a bit more easily.

Please visit CaregivingCafe’s Directory, which has additional resources!

 

 

CAREGIVER SUPPORT

Local support groups

Today’s Caregiver – find support groups in your area

 

Online support / tips / info / motivation

Caregiver Action Network – information, resources, support, tips

Caregiving – helping caregivers to cope; community of family caregivers; support

n4a (National Association of Area Agencies on Aging) – Caregiver Support

 

 

CAREGIVER RESPITE: TAKE A BREAK

Organizations that lend a hand

Faith in Action

Check with local places of worship for ministries that provide assistance to seniors, people with disabilities or caregivers at home.

 

Adult Day Centers

Adult Day Care – find centers in your area. These centers look after seniors while providing safe and stimulating activities so family caregivers can take a break.

 

More information on Caregiver Respite

Caregiving Cafe: Caregiver Respite Care

Helpguide: finding and choosing respite services, basics

Respite Care Locator

 

 

CAREGIVER EDUCATION

myCNAjobs – apply for caregiver or CNA jobs; caregiver training

Caregiver U – emotional support, fall prevention program for Seniors in Central Texas

 

 

CAREGIVING – GENERAL

Aging Care – eldercare tips, caregiver support, daily living

Area Agencies on Aging – resources by state

Caregiver Action Network – resources for caregivers

The Caregiver Partnership – tools, info & support for caregivers

Monarcares – managing caregiving

Caregiver Access – resources, support, education for caregivers

Caregiving Cafe Resources & Support

Eldercare.gov [PDF] – 1-800-677-1116 for information on helping older adults: finding in-home care, transportation, legal assistance, caregiver self-care…

Eldercare Locator – caregiver respite, housing, transportation, in-home care, LTC, legal assistance

 

 

DISEASE-FOCUSED ORGANIZATIONS

Caregiving Cafe: Disease & Condition Organizations

 

 

TECHNOLOGY

Apps

Express Well – keep health records at your fingertips 

On Time Rx – medication reminder

 

Assistive Technology

Tobii – devices to help people with speech impairments to communicate

Boundless – devices for people with vision, mobility, hearing, learning impairments

The Caregiver Partnership – links to assistive technology

 

 

SUPPLIES

Mountainside Medical – home medical equipment & supplies

The Caregiver Partnership – incontinence products, caregiver resources

Creative MedConnect – aids & products to help with caregiving

 

 

BENEFITS

Benefits.gov – find out benefits for which you may qualify

 

 

MEDICATION ASSISTANCE

Needy Meds – find help with the cost of medicines

Patient Advocate Foundation – help with medications, insurance issues

 

 

LOCATING SENIOR LIVING

Eldercare Locator – find residences for seniors

 

 

COMMUNICATION

Finding other caregivers

The Caregiver’s Survival Network – connect with other caregivers, find resources

Treatment Diaries – connect with those who share your experience

 

Sharing updates with family & friends

Care Pages – free patient blogs that connect with family & friends

Caring Bridge – connecting families and loved ones

eCare Diary – caregiving resources and tools

Lotsa Helping Hands – coordinate care, find resources, volunteer

 

 

ORGANIZING

See article: Tools to get your caregiving organized

Senior Care Organizer – collect, organize, store information needed to care for your loved one

 

 

HOME DELIVERY

TLC Kitchen – nutritious meals delivered to your home

Your local grocer or pharmacy may have a delivery service.

 

 

DOCTORS / NURSES MAKING HOUSE CALLS

House Call Doctors – doctors making house calls

Visiting Physicians – doctors making house calls

Nurses Unlimited – nurses making house calls

 

 

TRANSPORTATION

Eastern Royal Medical Transport – long-distance non-medical transport

Metro Access – Austin, TX. Find this service in other US cities

 

 

CHECKLISTS

Caregiver Action Network – checklists: medications, doctor’s visit, patient file

National Caregivers Library – health, legal, finances, housing

 

 

 

 

 

Reaching family caregivers in order to make them aware of the many services, products, resources and information that are available to them is one of my top priorities for 2013.  It is one of my – dare I say – new year’s resolutions!

Because becoming a family caregiver often leaves you not knowing where to begin or even what questions to ask – much less where to get your answers – I like to provide links that offer various ways to make caregiving more manageable.

Peruse through the websites below.  You’re sure to find something useful to help you make caregiving a bit less overwhelming.

 

HEALTH

Six-Step Screening – early signs & symptoms of oral cancer

Oral Cancer Awareness Drive – teaching public about symptoms of oral cancer; encouraging screenings

Power of Pain – educates, supports patients with chronic neuropathic pain; promoting public & professional awareness

NASMM: National Association of Senior Move Managers –  helping seniors and families with moving to a new residence

 

CAREGIVING

Sentry Telecare – automated telephone check-in calls for people who live alone

Caregivers 4 Hire – private duty caregivers, companions for hire; private duty jobs

Mike’s Place – Adult Day Center for Alzheimer’s patients, Austin, TX

Meals on Wheels and More – meals for homebound persons & other programs

Easter Royal Medical Transport – long-distance non-emergency transport for elderly & disabled persons

Caregiver Access – information, resources, support for caregiving all in one place

Monarcares – coordinating, managing care made easier

Kind Ethics – encouraging and guiding families to make difficult decisions

Dynamic Group – e-Learning for the healthcare professional

Kariberit – Speaker Kari Berit, caregiver expert provides resources & information on caregiving

Brighter Tomorrows Hope – supporting families with a childhood cancer diagnosis

Mom Generations – fashion, beauty, family advice…because caregivers are beautiful people!

 

DIVERSIONS

Fare Buzz – cheap flights for when it’s time to get away

 

Family caregivers must learn to juggle a multitude of tasks and responsibilities in their acquired role.  Lacking the tools to balance these additional duties with their existing ones can leave family caregivers feeling overwhelmed, isolated, depressed or burned out.  To combat this negative state of mind and to provide practical tips to manage their demanding journey, Austin Groups for the Elderly holds free informative seminars for family caregivers.  I attended their most recent one last Saturday:

 

Emotional Survival for Family Caregivers

Speaker:  Barry J. Jacobs, PsyD

Clinical Psychologist, Family Therapist, columnist, author

 

Dr. Jacobs’ personable and approachable manner quickly put a standing-room only group of caregivers of seniors at ease.  While the tone was light, he furnished sensible answers to problematic situations presented by the attentive audience. Pointing out that 31% of US households have a caregiver [NAC/AARP 2009], the need for solutions to the many predicaments that arise is obviously a pressing matter.  In order to properly address these caregiving situations and to come up with suitable alternatives, the caregiver must also take care of him/herself.

Dr. Jacobs’ book, The Emotional Survival Guide for CaregiversLooking After Yourself and Your Family While Helping an Aging Parent, “addresses all the tough issues while providing a powerful model for resilience and the personal rewards that can come with caregiving.”  – John S. Rolland, MD, University of Chicago.

 

Emotional Survival Guide  –  Dr. Jacobs’ website

 

Below are highlights from Dr. Jacobs’ talk:

Long-term caregivers are plagued by some of the problems below, which need to be recognized so that they can be treated:

  • insomnia
  • depression & anxiety
  • neck or back pain, often from lifting
  • feeling worn out; lower immunity & often sick
  • many caregivers neglect their own health
  • poor health can lead to increased mortality

 

 

Reducing the stress that results from caregiving without support can be accomplished by caregivers doing the following:

7 KEY CAREGIVING TASKS

  • Defining commitments – What are you willing to do? Set limits.  After these, find help.
  • Utilizing support – Ask for help without shame. Pace yourself.  Use support early, when you don’t feel you need it, so you last longer as a caregiver.
  • Handling sacrifice – Know your limits; keep your dreams alive; know what you are giving up.
  • Weighing hope and acceptance, fantasy and reality – Be informed; be cautiously optimistic, realistic; spend time with family and friends.
  • Fostering awareness and flexibility – Balance living one day at time with future outlook.
  • Protecting intimacy – Create means of caree to give back; negotiate duties with family members.
  • Sustaining the spirit – Seek religious counsel, fellowship.

SUGGESTIONS FOR BETTER CAREGIVING

  • Understanding the course of your loved one’s illness and its potential variability are crucial for defining commitments, limits and making contingency plans.
  • Increase support as disease progresses and care demand increases.
  • Keep 2 lists – daily chores and future considerations.
  • Find ways to reflect upon and revise perceptions and meanings – online or in-person support groups, journaling.
  • Allow patients to contribute as much as possible.
  • Hire aides so you can be a loving family member.
  • Don’t let anguish overwhelm all wonder, fun & love.

 

RESOURCES

The Emotional Survival Guide for Caregivers – Looking After Yourself and Your Family While Helping an Aging Parent

Alzheimer’s Association

ALZwell Caregiver Support

National Family Caregivers Association

The Well Spouse Association

 

 

FREE CAREGIVER SEMINARS

A.G.E. of Austin is changing its name to A.G.E. of Central Texas to better reflect the area that it serves.

Please visit their website to find FREE seminars, information, resources, support groups for caregivers of seniors:

A.G.E. News & Events

 

Next seminar on caregiving:

Sat., July 14, 2012    10 am  –  12 pm

“Practical Tips for Alzheimer’s Caregivers”

RSVP:  Bruce Kravitz, AGE Community Education Director

bkravitz@ageofaustin.org

512-451-4611   x 236

 

FREE CAREGIVER CLASSES

CaregiverU

“Powerful Tools for Caregivers”

Faith Unger, Project Coordinator

512-451-4611   x244

 

 

Additional caregiver support:

AREA AGENCY ON AGING OF THE CAPITAL AREA

Serving Bastrop, Blanco, Burnet, Caldwell, Fayette, Hays, Lee, Llano, Travis, Williamson Counties in Texas

Provides quality services to support and advocate for the health, safety and well-being of the older individual in the Capital Region.

 

The links below bring caregivers medical resources and health information to keep up with the latest news and developments.  They also render a place to meet and to exchange ideas with other caregivers and patients – people who understand your circumstances and who can provide welcome support!

 

 

MEDICAL RESOURCES & HEALTH INFORMATION

SCPharmacist – trusted healthcare resources, prescription drug savings tlps

Health Alerts / Advisories – alerts, health info, research

Health Canal – medical news

Dana – brain research & information

Vascular Web – Podcasts, resources, research for patients, families, students & professionals

DrAnnBeckerSchutte – tools for emotional, physical health

Spina Bifida Association of GA – support to live more fulfilling life

Let Life Happen – cancer & abuse survivor bringing hope

Ability4Life – caring for aging parents: products & information

Best-Endings App – preparing for our end-of-life

Best-Endings – planning now for our end-of-life

Stardust Ashes – scatters loved one’s ashes into stratosphere

 

COMMUNITY & SUPPORT: find other caregivers, families, patients

Ben’s Friends  – support & information, communities of people with rare diseases

The Coffee Klatch – support & education for families of special needs children

Seize the Days – celebrating cancer patient survival life with inspirational stories

Inspire – online health & wellness communities for patients & caregivers

Groups@Care – join / form groups with similar interests

 

WELLNESS

La Via Sana – support for people dealing with mental illness

Soma Vida – work / life balance, wellness

Judy Kegg at Floating LotusWatsu & massage therapies

Hill Country Healing Arts – Watsu & massage therapies

Cure for Space – uncluttering & organizing homes

 

In the midst of the buzz about Rare Disease Day throughout February, I came across JC Colyer on Twitter. He has been diagnosed with Ataxia.  Curious to learn about this rare condition, I asked him if he would like to talk about Ataxia so that we can learn about it. Graciously, he agreed to contribute the post below.  Not only did he provide details about Ataxia, but he provided a key ingredient to coping with any major challenges in life: adapting your lifestyle!  Thank you, JC!

 

Rare Disease Awareness Day was held worldwide on February 29 this year, an effort by NORD [National Organization for Rare Disorders] to educate the general public about rare diseases.

NORD’s MISSION

“NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.”

 

What is the purpose of increasing awareness?

  1. Learn about symptoms
  2. Familiarize medical community with disease
  3. Recognize symptoms early so diagnosis can be made & treatment can begin
  4. Raise funds for / encourage research to find successful treatments & cure
  5. Develop efficient medications for that disease

 

 

Adapting your lifestyle when there is no other choice: “Diagnosis Ataxia”

by JC Colyer

 

My name is John Colyer, since my early teens I’ve had the nickname, “J.C.”.

I’m about to turn 50, and would have never expected to be in the situation I am in:  for the last 10 yrs. I’ve had a slow but steady downfall caused by a rare disease known as “Cerebellar Ataxia”.  It causes cerebellar atrophy, which means the part of my brain, called the cerebellum, is shrinking. I’ve had 3 MRI’s, multiple genetic and non-genetic blood tests and have seen numerous Dr’s and Specialists. I didn’t recognize a problem till friends and co- workers brought it to my attention. Ataxia causes your balance, coordination and speech to deteriorate. It makes you look and sound drunk, which is ok to people when you’re young, not so much in your 40’s. I had a fall in Jan. 2010 and broke my left knee cap and had 2 surgeries to repair it. While recovering in bed, I found BEN’SFRIENDS.ORG, a support network for people with rare diseases. I joined their Ataxia support sites,

American Ataxia Networking (http://americanataxianetworking.ning.com/ ) and

Living with Ataxia (http://www.livingwithataxia.org/ ).

I had never had contact with another person with Ataxia before then; it was the first time I felt it was real and not in my imagination. It became a life line for me, a safe place to vent with others who understood my struggles. I use a Quad cane for stability when I walk, and stress and fatigue magnify my symptoms. I moderate a few sites now with Ben’s Friends and find helping others helps me. I struggle with depression and take medication to help me. An internet connection is the same for a disabled person as an able person. If I didn’t tell you I was disabled online, you wouldn’t realize [it]. I’ve learned I must just Keep Trying and Stay Strong!

 

 

Was connecting with other Ataxia patients what made you decide to go with the flow instead of fighting Ataxia any longer? Do you feel that knowing that others are somehow managing gave you the motivation to create a new life for yourself?

Being able to connect with other Ataxians was a big thing, there is not one Ataxia support group in the state of New Jersey. Face to Face is always the best, but I am grateful to Ben’s Friends. My anger was bad, I also went to group sessions at a center for vocational rehabilitation for the developmental and physically disabled and learning how to cope from others who have been disabled longer then me calmed my anger. I helped them also, I made friends. It made me want to keep trying.

 

• Do you have support at home from family or friends? How do the help you? 

I’ve lived in a 1 room w/a bathroom apartment on the Jersey Shore for 12 yrs., it is perfect for me and in my budget. Family and Friends care but have their own lives and their own children. They care but I feel how uncomfortable my disability makes them. I know they would be there if I need them. I’ve alway’s been a loner.

 

• Does your health insurance plan cover your treatments, medications, supplies? Do you get benefits from Social Security or Medicare?

I’m on Social Security Disability, I so appreciate the safety nets we have. I’m on PAAD, Prescription Assistance for the Aged and Disabled. I begin Medicare in July, had to wait 2 yrs.; I paid for a basic plan for those 2 yrs., it is not easy making ends meet. It panicked me when I first found out the amount I receive , I made a lot of adjustments, physically and financially but everyone has their struggles.

 

• Did doctors figure out what you had after looking at your test results? Who figured out you had Ataxia? What treatment did he/she recommend? 

The MRI showed Cerebellar Atrophy which causes Ataxia, genetic blood test was negative, but there are genes that haven’t been discovered. No medication for Ataxia; anti-anxiety, anti-depressants are prescribed. Lifestyle and diet changes are important. I follow Gluten Free, Vegetarian diet, no alcohol and low sugar and no white flour or processed foods. It  sounds harder than it is :)  Fatigue is a big problem; I put a lot of energy in things able people don’t have to think of.

 

• Are you in pain?

I have my pain in my hands at night, I stay away from prescription pain killers even though Dr. offered them. I fell in January 2010 and broke my left knee cap. I had 2 surgeries to repair it. During my recovery in bed I found Ben’s Friends. I was in the darkest place in my life; guess that’s what they call the crossroads. I’m still and always will be a work in progress and I’ll keep trying.

 

NORD [National Organization for Rare Disorders]

EURORDIS [Rare Diseases Europe]

RARE DISEASE DAY USA

American Ataxia Networking

Living with Ataxia

Ben’s Friends

 

I am always on the lookout for great information that caregivers can put to good use.  Please visit the links below to find resources, insights and tips that can help your caregiving run a little more smoothly.

Keep in mind that our brain needs fuel to stay sharp. Some articles teach, others enlighten.  Others merely propose a different perspective on common ideas. Consider them mental calisthenics!

Explore & enjoy!

 

 

Small Bird Studios  –  loss of child blogs

Invisible Disabilities  –  videos, education & support for people with chronic illness

Association of Blind Citizens  –  resources for the blind

Schizophrenia Forums

National Stroke Association  –  education, treatments, support

Ability4Life  –  resources for our aging parents

Best-Endings  –  addressing end-of-life topics

NHS local  –  UK health information

Genetics Home Reference  –  guide to genetic conditions

Caregivers of AIS Support Group

Wallpaper Magazine –  design, interiors, architecture, fashion, art

Adventurer Jim Clash – “interviews high-profile guests who push their life to the limits”

Compassion and the Individual  – What is the purpose of life?

Create your own support groups  –  join or start your own