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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I was suggested this blog by my cousin. I am not sure whether this post is written by him as nobody else know such detailed about my problem. You’re wonderful! Thanks!
The issues with direct care staff and caregivers is unfortunately too common. Hope you’ll chime in and tell us some of your experiences.
Don’t worry about that Mary. I have been spending time remembering and also carrying her spirit, teachings, and example in my heart.
Hi Gary:
I’m so sorry about your Mother passing. It is a very mixed time for you. I hope you give yourself the time and space to mourn as well as being relieved that she is suffering no more.
Thanks Mary. Believe it or not I started having the tear-ups and beginning the grieving process last Sunday. Actually I think because of the seriousness and severity of this round of medical problems I have been slowly preparing myself for what I knew would come.
I think that this is part of a truly caring caregiver’s role. If they are actual family (as in my case)or were treated like it then one must at some point deal with the loss and passing from one world to the next of those you give service to. Frankly if I were on the other side of the stick I would want that kind of connection. That would mean that the person(s) giving me the care and help I needed would one day have to face me passing to the next life. So it is all part of this great adventure I think.
Once again thanks Mary for your kind words and thoughts
Gary, I’m sure you and your Mom have been preparing for a long time. Death is a part of life and is easy to rationalize when it is not someone close to you. When it is someone you love, it is another whole minefield full of emotions and heartbreak. I know your Mom suffered terribly, and that was hard on both of you. Now, you can start to heal and move on. But give yourself some time to remember all the good things about your Mom. You have shared some great stories of you and your Mom watching movies together. Keep those memories.
All our thoughts and prayers.
Thanks for all your assistance and support. I won’t be needing to deal with her nursing homes any longer. She passed away this morning. YEAH No more pain and suffering!!! So it will now be time to fill a rather large hole in my life. Since almost everything I did was somehow involved in her either directly or indirectly.
Sorry if I seem morbid. But I am truly happy for her as she now is in the other world. No kidney dialysis, no respirator, no constant blood tests and no more indignity of any sort.
P.S. Good luck on the camera. What a bummer. Did you go to the manufacturer’s website. They might be able to help.
P.S.S. it is ironic that reading this post last night inspired me to write my first post in a couple of weeks. It was mostly about me and my mothers caregiving journey. Then this morning I got the call I have been expecting.
Once again I am truly touched by your moral support.
Oh Gary, I am so sorry. It has been such a long road.
You and your Mom have been though so much. Like you said, she is no longer in pain. And I’m sure that is a relief. It must have been terrible to watch her suffer.
But your Mom was very lucky. You gave her love and devoted care every minute of your life. You stood by her side and she knew she could count on your love.
As you are planning for the next part of your life. Look to the people around you and know you are going to need their support and love. Take any help that is offered. We all need other people.
Gary, Know that you are in my thoughts and prayers. Sending you lots of hugs and good wishes.
Oh sorry what is that kizmo Aaron is using. I think I might have seen something like for one of Bruce’s students. The trouble is Jose’s parents waiting for too long to use such devices. But in spite of this he still tried to walk from time to time. Wasn’t pretty but he did manage to get from point A to point B.
HI Gary,
You and your Mom have had an incredible journey of great love and dedication. I’m sure your mom had to make many difficult decisions, including moving you into some sort of residential setting.
Now, as your Mom is the one in the residential setting and you are dealing with the ups and downs of the nursing home, you are learning important lessons on what is good and bad help.
There are many loving individuals who make such a huge difference in our lives. I like to focus on the good.
Now, you are in a transition as you have to decide what you are going to do next. My suggestion would be to go to the support coordinators, social workers or whatever the name they have in California and see what resources and choices are available for you.
You are smart, and have a great way of asking questions to get what you need. This will be a tremendous skill as you go about building your future life. But don’t try to go it alone. See if you can find someone who can help you. It takes a team, and even with all my skills, I still ask for help all the time.
Hope this helps. I wish I lived closer to help unwind your system. But there is someone in CA who can help you. We just need to find them.
ps. The picture is not Aaron. I can’t figure out how to download my camera now, and am having to use stock photos until then.
Hi Mary. I’m finding extremely educational. As you know from my blog and some of my comments. My mother contracted rubella when she was in her 3rd or 4rth week with me and I know I could have been messed up pretty badly. I may or may not have mentioned that my mother did have the option of putting in a group home when I was very young child. Of course I have no idea what that would have done to me.
What you say makes me wonder many things. I also find myself thinking some things as well.
For one I don’t like the idea of Aaron, my dear friends Maria, Richard, or anyone else being thought of as “Consumers” They are people who for whom have extra special needs. I would rather be called a client than a consumer.
How do these companies function? For that matter, How does are society as a whole function in relations to these sentient beings?
I also wonder how come it is that so many of these individuals(include myself)are in very poor families?
Well I don’t expect any answers but I do hope that more people will help us find a better way for those like your son Aaron to somehow be more a part of the web of life that they are always a part of.
Now that I have gotten strange have a great day Mary and keep climbing every mountain and teaching us so much.
Hey Mary,
It is so great that you have such a caregiver on your side. What a fabulous person. I found reading this post to be hopeful and inspiring. I know a lot isn’t right but just a little that is, is reason for hope. And that’s what we all need when things aren’t good. Hope that they will get better, right?
Thanks Alison. I try and be positive. We have had some terrific caregivers. They really are Aaron’s surregate parents and friends. They help him get dressed, eat, take baths. .. They are just so so important to Aaron’s life.
Tomorrow, I’m going to talk about some of the other issues.