Tori and Mom!
Creative Commons License photo credit: easystand

Supported Living, Assisted Living, Independent Living, Residential Services: The key to quality care is good caregivers.

Dear Caregivers,

It takes a special person to work with my son, Aaron, and other people with severe disabilities.

Even though you hear, “Ah, you must be so patient and kind” and “God will reward you in the next life” working with people with disabilities is a job without status. Often you are lumped into the same devalued fringe of society as our children.

The pay sucks. You work for the company for 10 years and you might make $10.00 an hour.

It is a lonely job. You basically have all the responsibility and there are few opportunities to talk with other caregivers, even the staff working with the same people.

The hours are long and since they require overnight, holiday and weekend stays, they disrupt your family and make it difficult for you to have a regular social life–even on your days off.

You can’t sleep well, you can’t plan your time, you are often given more responsibility–but no compensation….

You don’t have the support you need:

If you call a supervisor, you spin a roulette wheel and gamble whether someone will call you back, answer your question or give you backup. After all, the supervisors usually work during the day, and you don’t begin your shift until the day staff goes home.

Since there is such turnover in the field, you often can’t find a replacement for your own health and vacation time, even if you follow the appropriate procedures. There are few subs for emergencies.

When things go wrong, you are usually on your own to figure things out.

Many companies don’t have money for inservice, so while you work with people with some of the most complex needs in the country–you don’t get information and instruction on what you do.

You do get the blame if you do anything wrong.

Most companies don’t pay for sick days, so you are forced to come in sick.

Most companies don’t pay for your meal or expenses when you take the “client” out into the community.

Most companies won’t even pay for your mileage (unless the “client” is in the car), even if you have to run all over town to deliver timesheets, go to meetings, pick up prescriptions….

If a “client” gets sick, or there is a snow day, the roof leaks or the schedule changes, YOU are the one who must change your life to cover the person in your care.

Sometimes, the person you serve has a better life style, home and community life than you do.

BUT, BUT, BUT…

You are a critical member of our child’s team, and your attitude, work ethic and habits make a huge difference in our child’s life–and in ours.

So, why do you do care for people with disabilities?

I have met caregivers who say they feel this work is their calling. Others do it for religious reasons. Some do it because they have a family member and know the need.

Others do it for reasons that are not so noble. In the next post, I’ll talk more about this group.

Meanwhile, Every caregiver who sacrifices to work with Aaron and others is a blessing to our children and our family.

Every caregiver who can see our child and love them for who they are, is a gift from God.

We have had caregivers make Aaron part of their family. One even named their child after Aaron. Another took him with them on family vacations. Another took him to workout at the gym, picnics, and camp-outs with his friends.

One caregiver has been with us for almost 9 years. She works with us if we have to change our schedule. She has watched Aaron grow up. She makes sure he is always well groomed. She makes healthy meals. She is a gem who is now a treasured part of OUR family. We know she loves Aaron like her own child. She will tell us when the other caregivers are not giving Aaron the support they should.

There is no praise and thanks we can give to the dedicated caregivers who have been part of Aaron’s life. They make all the difference.

What are your thoughts?

Have you had experiences working with residential companies? Did the staff do things and engage with the “consumers” in activities of daily living and in the community? What thoughts do you have about what is mentioned? Have you had a caring long-term relationship with a child? family?

Keep Climbing: Onward and Upward.

All my best,

Mary

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