As time goes by it seems that we get to know more about the disease than the experts. Perhaps not the technical aspects, but We know first hand about medications, reactions and side effects. We know the hands-on, daily living challenges not the clinical view or observations seen in brief follow up visits. We often struggle with this. When a problem arises, the doctor will often reply “That’s to be be expected.”

“EXPECTED!?!” the thought reverberates in our head and we ask, “If it was expected, why didn’t we get told about it before?”

“Caregiving is like being given an shovel and told to dig your way out of a hole, a damn near impossible task.”

When I was a lad, the doctors around here were still making house calls. Medicine has made great advances since then, but those advances have come, in my estimation, at great cost.

Medicine is now big business. It seems the emphasis is on making money. Shortened appointment times, more tests, and some doctors only know “what they know about a patient” from their chart. Back in the day, when doctors made house calls, he or she could see, firsthand, the obstacles a patient had and the “expected problem” for could be addressed. A doctor would offer suggestions or give a phone number to someone to call. Someone who come to the house and helps out even if it was to look at physical obstacles and help make adjustments.

Somewhere a long the line we’ve lost that. Somewhere profit jumped ahead of care. Look in some medical offices now and you see the billing staff and records command more space than patient waiting areas and exam rooms! (It is the nature of the beast – see my an earlier commentary on Parkinson’s Law.)

Perhaps this is why Hospice is so great. It is a return to hands-on, in the trenches, medicine. Medicine the way it should be practiced. Unfortunately, for the most part, it is limited to end of life care.

Under Hospice, when a incident of “that’s to be expected” arises, care workers explain the ‘what and why,’ then show how to handle situations. In a better world, services, like hospice, would be available when the diagnosis of a disease like Parkinson’s is made. A card or phone number would be made available. When a number is called, someone would answer your your questions and explain the whys and how comes. They could visit and problem solve in the home. Scattered around there are agencies, which do this, but they are few and far between and scratch for funding buried at the bottom of lists. There existence only known by word of mouth.

This brings me to the title of my rambling. What is this Caregiving? To me it seems caregiving is easing the burden – making life easier and worth living for the patient. It is the selfless actions of people caring and helping a stranger or a family member. Caregiving can be summed up in three simple words: easing the burden.

Caregiving has made the forum on this web site work for years now. Easing the burden has been the seed of many web sites and chat rooms all over the web. Caregiving has helped countless people make it through unexpected encounters. It has provided a shoulder to lean on and it has helped improve the lives of many.

We are witness to the many who sit at a keyboard – asking questions, reaching out with hope that someone will understand and that someone will help.

As this new year starts, let’s keep a mug of hot chocolate by the microwave, a candle in the window and a chair pulled out. A caregiver will arrive sometime. Someone to sit down and try to ease the burden.

I know I’m a patient, so it might seem bold to talk about the aspects of caregiving. But let’s not forget that we are all in this together, be nice to each other and pay it forward as others who have done before us – let’s all be caregivers and ease the burden.

Editor’s Note: Al corresponds on our Forum, using the screen name LOHENGR1N. He was diagnosed with Parkinsons in 1986.

About the Author
Al is a Parkinson’s patient from Massachusetts. A divorced, father of three and Grandfather of four, he lives with his Service Dog in the Berkshire Mountains in the far western end of the State. Al was a welder before Parkinson’s changed his life. He has, during his battle with Parkinson’s, strived to educate people, legislature, medical field, and general public about Parkinson’s Disease and it’s effects upon patient, family and loved ones. To that end, Al has served as the State and Congressional coordinator for Parkinsons Action Network in Massachusetts.