CAREGIVER ADVICE TOP TEN LIST

(Includes original and reprinted quotes from comedic sages like Dave Barry.)

10. Never under any circumstances take a sleeping pill and a laxative on the same night.

9. Take out the fortune before you eat the cookie.

8. Never lick a steak knife.

7. Advice from a cardiologist: If it tastes good, spit it out.

6. The one word that explains why human beings have not achieved their full potential: meetings.

5. Nobody cares if you can’t dance well, just get up and dance.

4. If you can’t find the milk in the refrigerator, check the cupboard.

3.  Make a checklist for when you finally get a night out: Shoes, keys, wallet, phone, pants.

2. A son calls his mother. Mom how are you. Mom replies. Not too good. I haven’t eaten in 38 days. Replying with concern, the son asks, “what’s the matter mom, are you not feeling well, have you been to the doctor?” Mom replies, not that, “I didn’t want to have my mouth full when you called.”

1. Never put the air freshener next to your hair spray.

Developmental Disability Awareness Month 2014

What did I know about developmental disabilities (DD)—then mental retardation—in 1986? Nothing. I didn’t give people with DD a second thought. They were in the peripheral of day to day in my daily encounters.

It was not like they were invisible, though. Across First Street, our kitty-corner neighbor’s adult son who lived at home had “something.” I didn’t know what and I didn’t care. I just knew his bike was bigger than mine and I wanted to ride it. He let me. I crashed. Then the girl who was riding right behind me ran over my nose. Ironic?

Fast forward a through a transient life of sports, nightlife, and Aspen to marriage, pregnancy, and the first of two alpha-fetoprotein tests. The first came back abnormal. I pulled out my giant book of baby information and looked up the implications: Down syndrome.  I flipped back and forth through the large pages of the book, familiarizing myself with the disability through watery vision. The second test came back normal. Even so, the experience foreshadowed my initiation into Requiem for Normal.

I put it out of my mind. Healthy thoughts, healthy baby…until the six month well baby check-up. All was not well. I pulled my head up out of the sand.

At first I saw only glimpses of disability, still not looking it wholly in the small eyes, low brow, developmentally delayed face. But neurologists and therapists and hospitals and IFSPs and IEPs have a way of prying open your eyes, even without a diagnosis. I didn’t blink. I kept them open and stared right back at awareness.

Would I have been mindful of people with developmental disabilities were it not for full immersion?

I seriously doubt it. I am not the guardian angel type. I am not like the many we have met through these years in my awareness journey—guardian angels masquerading as ordinary people, people who spend their time, their education, their mental and physical resources caring for my now twenty-seven year old daughter. I am nothing special. I am middle-of-the road, Midwestern, Jane Doe average. It is my daughter who is special, who is brave, trusting, and deserves to be seen.

I acknowledge that Everybody’s Got Something. I only ask that you are better and bigger than I was and lift your head from your own challenges to see without staring who people with developmental disabilities really are: friends, family, patients, students, teachers, neighbors, employees.

Thank you.

Caregivers: Sharing the Care (part 1)

Do you ever feel that you’re in a state of suspended animation?

No matter how many commonalities caregivers have, in the early hours of the day or the late hours of the night when your loved ones need bathed, fed, dressed, toileted, calmed,  cared for, you are pretty much alone. When they need help getting to the doctor, going through the bills, taking medication, you’ve been pretty much by yourself. I know. I was there for nineteen years.

Even though Caregiver Action Network  statistics show “More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year,” as indicated in a 2009 report,  a Caregiver.com article by Kathy Bosworth notes that the majority of caregivers  are  “going it alone.”

“The stress of going it alone is dangerous to your health,” National Council of Certified Dementia Practitioners states in their Understanding Caregiver Stress Article.

Professor Marvel and Dorothy

That means we’re it—unless we find, ask, or pull assistance instead of a rabbit out of Professor Marvel’s hat. 

My assistance came in the form of Development Homes, a group home in North Dakota. Katie and I jumped into the tornado of change, left husband/father back in Colorado, and landed in Midwest-land, otherwise known as Grand Forks. My good witch of the north wasn’t Glinda, it was Tanya—Katie’s nurse at Development Homes, someone who took Katie’s health and best interest under her wings.

Transitioning from living at home to living in a group home for Katie was an adventure. It was more interesting, more stimulating, more consistent in medical care. It was a horse of a different color and she began to thrive—slept through the night, fewer doctor’s visits, and more magical mastering of day to day challenges.

I broke out in hives.

Trusting others with the care of a loved one is scarier than a pack of flying monkeys, whether it’s for an evening, a weekend, or longer. The emerald lining, for me, was that I went from primary caregiver to being part of a team of caregivers. Still, the very idea of sharing the care in of itself can sound insurmountable.

It seems like more work than it’s worth—additional stress. There is one obstacle in particular that I had, and have heard from others, that keep us from reaching out: Who.

Who do you trust? Nobody can do this as well as you, right?  Valid statement. But since cloning is out, for now the best solution is training.

Stay tuned for sharing the care tools…

 

Advocacy Series: Advocacy 101

What is advocacy? Let’s spell it out: advocacy is not a four-letter word (although we may have been frustrated enough to use one). Advocacy and advocates are not something people need to fear.  It is simply being for Something.

Advocacy does not mean you have to burn your bra…or your jock strap.  You don’t have to heft poster board with a magic-marker-message above your head and chant, “Down with (insert antagonist of choice here)” among a sea of protesters, nor do you need to lie down in front of a bulldozer. True, this is advocacy.  But this assertive form of activism is one that has often reached the desperation stage—and admittedly, there have been moments of desperation in my own caregiving days and nights where I considered extreme attention-getting methods.

So what are the different forms of advocacy?

• Legislative – lobbying to legislators to influence public policy.
• Legal – authorized to represent someone in a legal process.
• Mass – large group efforts, such as petitions and demonstrations.
• Social – create awareness or change on behalf of something or someone.
• Self – speaking up for yourself, your particular demographic.

Think of advocacy like a story. Where starts and where it goes is up to you. You choose the characters and decide the setting. Don’t worry about the key element that drives the narrative—conflict. That’s a given or you probably wouldn’t be advocating for/about a Something. If you don’t know where to start, channel your inner Glinda: “It’s always best to start at the beginning.”

Advocacy begins with a passion. What do you feel strongly about? Who do you feel strongly about? What causes you to spend your time, your energy, your money on? What is the philosophy, situation, need, obstacle, frustration, or joy that gets your blood pumping, that massages your heart.  What is your Something?

Call to action. This is when your “I am for…” can’t sit still, can’t be quiet. You feel the need to do something about your Something, to no longer be a bystander, to shed the sense of helplessness and become empowered through action.

Finding your voice’s comfort zone. Shy? You can voice show your support through passive methods: t-shirts, petitions, e-mails, letter writing, awareness bracelets, attendance at events. Outgoing? Any of the above of course, but add advisory committees, boards, meetings with policy makers, testifying, public speaking (stay tuned for a personal account in the Advocate Series: Speaking Of)

Fortunately, the wheel was invented some time ago. While no one has your unique perspective, skill set, or experience, there is a very good chance that there are other people who are advocating for a similar Something. Find them. Pool your energy. Share your stories. Connect with other advocates—there is strength in numbers.

Advocacy training resources:

Disabilities:  The Advocacy Institute has an online webinar. Note that there is a charge, but you can view past presentations for free for “a limited time.”

Autism: Autism SPEAKS has a tool kit download for families and individuals. You will need to fill out a form to get the link.

Medical: Patient Advocacy Resources is a site with links, books, and guides that can point a patient or patient advocate in the right direction for becoming a better partner in health care.

Lions Club Parade with MDS staff

Advocacy Series: Everybody’s Got Something

Advocacy begins with a Something. 

We all have a Something, a story. We all have a circumstance that challenges our hearts, our health, our happiness. This is how cliches such as “In everyone’s life a little rain must fall,” and “God doesn’t put anything on your shoulders He (She) thinks you can’t handle,”—this is how these conventions, these pep talks, become cliches.  They are universal beliefs and often doled out by the well intentioned ad nauseam.

There is an event, an illness, a challenge, a disability in each of our lives, or our loved one’s, that sweeps us away from our intended appointment with “normal” and into foreign landscapes. Often without warning, without training, without preparation our paths pivot, sending us careening into the unknown. Things that happen to other people have happened to us. Stares come our way. We become intimate with vulnerability.

Dizzy at first and with unstable footing, we can’t stand still. Restless. Helpless. Frustrated.  But human nature, gut reaction, is survival.

Breathe in, Breath out.

Moment to moment. One day at a time, we chant in our hearts.  We glance into the past at what if, but fact cannot be altered into fantasy no matter how strong the desire or denial. We face forward. The inescapable truth of the future hits between the ribs.

Breath in, Breath out.

Our shoulders hunch, flinch, upon the impact of sympathetic pats on the back, accompanied by universal beliefs voiced with aim to sooth and strengthen. The words give the spirit resolve, even company. We are not alone.

Breath in, Breath out.

The chin lifts.  The sensation of passive victimization fades, and in its place active realization seeps in, an empowering resolve: the need to do something about our Something.

What is your Something?

Toolbox Series: Care Coordination for Caregivers

As caregivers you often do it all–personal care, medical management, bill paying–as well as transportation and domestic duties.   In most cases there are three main differences between you, the family caregivers, and professional care coordinators. Professional care managers:

1. Educational expertise specific to case management
2. Emotional AND  physical detachment from that of a direct care provider
3. A paycheck

–Can’t do too much about the last two, but by using the care management tips and techniques utilized by paid supports, you can make your caregiving journey less stressful and more effective.

WHAT IS CARE COORDINATION?

Care coordination is the management of services and supports. Care Coordinators are the liaison between health care and insurance providers, support systems, and families.  According The CommonWealth Fund, a nonprofit that promotes quality health care, care coordination is the organization of community and health services.

care coordination model

Family caregivers can adopt professional practices by breaking care coordination into manageable steps. After all, time (and sleep) is usually at a premium.

 STEP ONE: ANNUAL ASSESSMENT

• Evaluate your loved one’s abilities
• Evaluate your abilities
• Evaluate your care environment (accessibility; safety; etc)
• Evaluate financial status (insurance; documents; etc.)
• Evaluate legal status (guardianship; power of attorney; etc)

STEP TWO:  IDENTIFICATION

• Medical services (type; frequency; location –home, clinic, community)
• Mental health supports
• Community supports
• Education (on loved one’s challenges)
•  Circle of support
•  Funding
• Advocates (Ombudsman; The Arc)

  STEP THREE: ACTION PLAN

• Create an Individual Family Support Plan (IFSP)
• Develop a caregiver team
• Establish a daily routine for stability
• Implement recordkeeping
• Begin “next step” planning (transitions – into/out of school; into adulthood; home to group settings; advance directives; etc)
• Find yourself supports (groups; respite providers; on-line networks; a clown)

Tools

–          IFSP (adapt to your needs)

–          Medical Home

–          Organization techniques

This is a process. Just begin at the beginning and follow the care coordination road from there. You will need courage and confidence along the way. You already have the heart. 

 

Quest for the Holy Label

Katie does not have the luxury of a label. She has a “group of conditions” with “not otherwise specified” or “pervasive and profound developmental disorder” characteristics. Try putting a label on that. Even the labeling Powers That Be in government and advocacy are inconsistent in their official terminology. They are at different evolutionary levels: Mental Retardation; Developmental Disabilities (DD); Intellectual/Developmental Disabilities.

undiagnosed

Neither does Katie have distinct physical characteristics related to a label—children with Down Syndrome have recognizable facial features and look like they are part of one big family. And she is not included in a .org support community like  Children with Autism, Down Syndrome, Fragile X, Prader –Willi Syndrome, or Angelman Syndrome. There is not a publicly recognized, organized movement with colored puzzle pieces, millions of followers on Facebook, and celebrity driven fundraisers or awareness walks for people who have an unspecified developmental disability.

The label that comes to mind most quickly for the general public is antiquated, inaccurate, and derogatory: retarded. One word labels are easier to digest. They are snapshots, blinks, for people who are not immersed in the culture.

When Katie was little I wanted to know what community she fit into. So we left our round (kitchen) table and went on the Quest for the Holy Label. After years of geneticists and lab tests and examinations we still had a group of conditions without a name. The only label we had was one they needed for education and insurance coding: profound developmental disabilities.

Now, I will tell you that not knowing a name for your child’s challenges, their Something, can create blissful ignorance.  No one tells you your infant’s likelihood of a lifetime of limited capabilities: will always wear diapers; need someone to dress her, feed her, bath her; will never learn to read, or speak, say “goodnight” or “what’s for supper” or “can I borrow the car” (yeah, we can probably all live without that last one).

Katie is now an adult. In our Quest for the Holy Label we learned that she doesn’t need a label. Her challenges–moderate, profound, or unspecified—are simply part of being Katie, they are characteristics, like her curly dark hair and infectious smile