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.

katie & dad 21 birthday day

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

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: Everybody’s Got Something

EGS Katie

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

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. yellow brick road beginning