What Is a Caregiver To Do?

10/14/2007 at 12:53 PM

 

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.

Leo Buscaglia (1925 - )

A few months ago, I wrote a blog post about how I appreciate my caregiver, and I received the following email:

Dear Vicki,

I need help. My wife has MS and she needs help sometimes. I am so frustrated because I want to help, but I don't know what to do. Can you help me help her?

Respectfully,

Fred

Fred's question was not an easy one. It really indicated the frustration created by merely trying to help a loved one. I wanted to answer his question, but I knew there was so much I did not know.

Some people become caregivers as a profession, but others take that role because of circumstance. My own disability was gradual, a result of Progressive MS, so my caregiver was able to accept his role gradually. In the beginning he wasn't a full-time caregiver and was barely part-time. He had no training and in fact, he had a full-time job and worked long hours, sometimes returning home late and tired, and I needed help.

When my personal caregiver began assuming more responsibilities, he often did not know what to do or how to do it and neither did I. I knew we had to work together, but I wasn't much help. How were we to handle all of this? His daughter was a Certified Nursing Assistant (CNA), and he found some of her training notes, 10 Steps for CompassionateCaregiving. That was a good start, but we found there was much more.

The goal of giving care is to enhance the quality of life for the disabled person.The carer and the cared form a partnershp and decide what should and should not be done, and when, but it's a trial-and-error, ever-evolving relationship.

The Internet provides some good sources:

Family Caregiver Alliance
Provides a public voice for families caring for family members with chronic conditions, offers programs to support and sustain families nationwide.

Ability Hub
Includes a section specifically for emotional and spiritual support of caregivers, or as they say, everyday warriors.

CareGivers-USA
Provides a nationwide directory of caregiver support services, all free and confidential.

National Family Caregiver's Association
Vows to educate, support, empower, and advocate - all sounding very powerful to me.

Caregiver Regional Resources International
Leads to international sources; where a completed short form helps to find support groups in a selected country.

My everyday warrior's first response is to help when he sees me struggling to do something. Yes, it would be easier to let him do it, but I also know the more I try to do, the more I can do. I intend to stay independent as long as I can. Sometimes, I want him to leave me alone and just let me struggle. And other times, my body tells me I can't do it today and I just let him do it.

The partnership works both ways. The caregiver helps with daily tasks and the person with a disability communicates when help is needed. In addition, a "thank you" or a "good job" is always appreciated.

Giving care to someone you love is satisfying, but it takes long hours, it taxes the emotions, it wears a person down. Some caregivers are on call all of the time; therefore, even though a caregiver may not be disabled, he or she is still restricted by the disability. This is a hard job.


Hopefully they get a break before they reach their breaking point. They can provide care only as long as they care for themselves, but sometimes they forget to take that time. National Respite Locator Service offers help to find a substitute so the tired carer can take a well-deserved respite, and then return, refreshed and ready to start again.

Caregiver Fred's question could not be answered by one person. There are many stories in the Blogosphere, each on unique. I'm glad to share what I know, but what works for me might not work for anyone else. I can only thank Fred for the email and hope he keeps asking, trying, learning, is patient and has good luck.

Filed under: multiplesclerosis, caregiver, disability, disaboom, multiple_sclerosis, vickismspath, health, caretaker, multiple+sclerosis, care, healthcare, caring, training, tips, disabled, ms