Good Morning Caregivers

An Army of One

Look around. Whom do you see? Women, men, teens, grandparents, spouses, sisters, brothers, friends, significant others.  Nurses, home-health aides, doctors, Visiting Angels, hospice care workers, social workers. Priests, nuns, ministers of every denomination. People of all races and ethnic origins.  All across the world, in every country, we are there. We are the caregivers.

Yet we are alone. Every story is different. Every caregiver fails in his or her own way. The guilt eats at us. The lack of sleep drains us. The accusations of neglect and abuse by loved ones suffering from dementia or brain injury haunt us day and night.  We feed and clothe and them. We bathe them. We cry for them and with them.  We love them. And some days we don’t like them. We go to battle for them and we beg for some time away.  We are part of you and we are alone.

My husband and I planned for the time when one or more of our parents would need care. We would bring them into our home and provide a safe, loving place for them as longs as it was needed.  It would be hard but hard is what life is sometimes.

Living with and caring for my father-in-law, Rodger, was far more difficult than I ever imagined.  I never suspected his quirky behavior was due to schizophrenia first diagnosed in his early twenties. A diagnosis long hidden from members of the family, including my husband and me. Not only had the disease affected his life but so had the years of powerful drugs that enabled him to function.  His memory and ability to reason were vastly diminished. Suspicion and paranoia made it impossible for him to trust me while I, innocent that I was, trusted him when he said he took his medication.

Although he lived for five years after his last psychotic break he never really recovered from it and the near fatal bout of pneumonia that he came down with while in the hospital.  After that came the heart attack, followed by surgery to implant a pacemaker. The pacemaker led to blood clots forming in his arm.  Blood thinners requiring regular blood tests caused him great anxiety.

“What is the government doing with my blood? Why do they need so much?”

My suspicion that he was developing Parkinson’s disease was deemed incorrect until months later it could no longer be denied. It ran in his family and his sister had recently died from it.  He needed a walker and could no longer use the stairs. Severe swallowing problems meant pureed food and thickened liquids made up his diet. I learned to cook food that tasted good and offered as much nutrition as possible but even I had to admit it looked awful.  Dementia came next bringing the phenomenon of sundowning along with it.  No one slept much once that started.

When people learned I was a caregiver they would say they understood. Some may have, on some level. But, I knew deep in my heart that they could not really know how it was.  How could they?  His life was his own. His back story defined who he became.  His history of illnesses was as convoluted and complicated as his mind.  He needed so much. What he got was one woman, part of a vast army of caregivers who tend their loved ones alone.

Some Caregiver Statistics from The Family Caregiving Alliance

Who are the Informal Caregivers?

Although there may appear to be wide discrepancies in estimates of the number of informal caregivers in the U.S., the figures cited below reflect variations in the definitions and criteria used in each study, e.g., age of care recipients surveyed or relationship of caregiver to care recipient.

Magnitude

  • 65.7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged. [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012
  • 52 million caregivers provide care to adults (aged 18+) with a disability or illness. [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1]Updated: November 2012
  • 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer‘s and Dementia , Vol.7, Issue 2.] – Updated: November 2012
  • LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21% vs. 17%. [MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers]Updated: November 2012

Caregiver Cover Webclick here to receive a 20% discount for blog followers

Lead Me to The Rock

lead me to the rock psalm 61 2

Sometimes prayer was the only thing that got me through the long days and nights of caregiving. Too much stress, too little sleep, very little help, all piled up and sapped my strength and I turned to prayer. In one form another my cry was always the same, “I need help. Please send help.”

And He did. In His time and in a way that may have been unexpected, help arrived.

For all the caregivers close to the end of their stamina, I send out this prayer.

“Hear my cry, O God; attend unto my prayer.

2 From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I.”

A blessed Sunday to you all.

Caregiver Cover Web

Click here for Exclusive 20% Discount for Blog Followers

Also available on Amazon

Published by Open Books Press – $15.95 Print $2.99 e-book.

NaBloPoMo November 2014

 

I Don’t Think I Can Do This Anymore

I felt that way so many times in the seven years I spent as a caregiver for Rodger. I cried and vented and wished for more wisdom daily. I saw every setback, every new symptom, and every dreadful new diagnosis as a sign of failure on my part.

Scalded by guilt, worn down by his refusal to trust me, I resented him. Fearing where this spiral would take us and knowing any chance of respite care was weeks away, I began to pray. There were no miracles for us. He was not cured. I did not develop the patience of a saint. But it helped me understand, again, that he and I were not alone. And in that moment that’s exactly what I needed.

Dear God

Caregiver Cover Web

Click here for Exclusive 20% Discount for Blog Followers

Also available on Amazon

Published by Open Books Press – $15.95 Print $2.99 e-book.

NaBloPoMo November 2014