Caregiver's Rant

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lngrid

Songster
10 Years
Sep 25, 2009
396
6
111
Where Chickens are Outlaws
Hi there.

I work as a caregiver for disabled people. I used to have a high-powered job working for a cabinet secretary, but when the chief executive's term ended, so did the cabinet secretary's and so did mine. I've long been politically active on behalf of the disabled, so my life just naturally segued in this direction. My point? I could easily be making a lot more money than I am now. But I love what I do more than I like money.

[rant=lngrid]
So what do I have to rant about? Well, despite the fact that disabled people have historically been marginalized, overlooked and under-served, they can do the SAME THING to their caregivers. So can their relatives. Case in point: my current client asked me to give up Thanksgiving with my family to accompany her to her family's celebration. Things were proceeding very nicely. Dinner was on the buffet and she asked me to get her a plate and please cut her meat for her. While I was doing that her sister the hostess says "Oh my, we don't have a chair for Ingrid. We don't have a plate for her."

Thank you, Perle Mesta.

I mean, not only do you FORGET that I might not really like to eat with the dogs, but you talk about your oversight in front of me as if I don't understand English. Now, to be fair to my client, she noticed this and went out of her way to be supportive and generous tonight.

But last summer I accompanied her to a picnic potluck given by a group of politically active disabled people in my community. These are highly intelligent people: lawyers, legislative analysts, program analysts, even the head of my state's Department of Rehabilitation. We arrive, I release her from the restraints that secure her in her van, unload her and her wheelchair, unpack the food we've brought, get her settled in a spot comfortable for her, fill her plate, cut her food and get my own plate. When I arrive at the table what do I find? No one has thought to bring a chair for me. My boss tells me to use the one brought by the guy manning the barbecue but halfway through my meal he's going home so once again I'm left with nowhere to sit. I was actually tempted to eat standing in yoga's Tree Posture until someone noticed the oddity and then deadpan, "Well, I feel like a flamingo."

Hello? You guys know what it's like to be abandoned on a country road at dusk in a manual wheelchair when the local bus isn't wheelchair accessible. You know what it's like to struggle to pay for an item in a store when the counters are set too high. You know what it's like to be treated like you don't count. How can you pull this on your CAREGIVERS?

My message? If you have caregivers or if you may ever need them, please remember that we are actually a part of you. We are your hands. We are your feet. But we are more than that. Good caregivers will empower you. We will assist you but never patronize you. We will keep your secrets. We will guard your interests. We will always present you in a respectful light, even when you aren't present. Not only do we have your back, we will pick lint and hair from it that you would never know is there. We probably have never faced the kind of discrimination you have, yet we understand and want to a bridge the canyon between a bubble of isolation and the world of participation. We believe in you. We don't do what we do out of pity but because we understand the world needs your talents. We make our society a bit better by helping you shine your light into it.

One final story: last summer my client attended a luncheon given for disabled students participating in a student leadership conference in my state's capitol city. Of course, I went along as the Faithful Sidekick. Because of seating restrictions one of the students was unable to have his caregiver seated at the table with him, so my client asked me to do double duty. I did, tracking down his lunch when the servers got profoundly mixed up, cutting up both their meals and feeding him. Guess who thanked me as we were all leaving the venue. THE OTHER CAREGIVER. Mr. Oblivious buzzed happily along in his wheelchair as if he had attended another luncheon.

Now, young man, you may have overcome tremendous obstacles to go to college and to be chosen over thousands of students to attend this prestigious conference. You may like to tell me all about that, but an ungracious little git is an ungracious little git no matter how much you try to polish one. I can promise you that manners and consideration will grease your life's path and take you much farther than bravado and self-aggrandizement ever will.

Because in the end, we all DO depend on each other. We caregivers understand that.
[/rant]

Thank you for listening. I feel so much better. Some of the members here at BYC are truly extraordinary people and I'm so grateful to have found this community. Go, BYC!
 
I agree. I was a CNA for about 15 yrs...i know exactly what you are talking about.
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Pssttt...Ingrid....toss one of these in your vehicle...
mission_folding_chair.jpg


Many people assume because my son is 20 and not physically challenged, he can amuse himself for hours at a time. He is severely autistic and about 2 mentally. I have a bag with a portable DVD player, an old game boy, comic books, and hot wheels cars that goes in the trunk...next to the folding chairs.
 
I worked in Assisted Living for a while, until my favorite client died. Some of the family members treated the staff as if we were servants instead of assistants and friends to their elderly.
 
Wow! What a message! I have to agree. I was a nurse for over 20 years. I always felt there should have been an ettiquette contract for those being admitted into the hospital signed by the patient and the family.
And again. Wow! Ingrid.
 
Thank you for your post Ingrid. I think a lot of people take caregivers for granted. Like it is just their job to take care of the person and forget about the caregivers own needs and comforts. My grandpa has caregivers and as he is getting less able to do things he is just getting darn mean to them, though some of his attitude could be coming from the tumor at the base of his skull growing. It has become very difficult to keep people willing to help him out.
 
Quote:
My daddy got like that sometimes. Before he had advanced Parkinsons he was the sweetest, most caring person you could ever meet. Some illnesses will do that to the client. That's no excuse for the families, though. People who haven't done it have NO idea what is involved in caregiving.
 
I am a caregive of another kind, but a caregiver none the less. My husband is disabled and chronically ill. He has Hepatitis C, he has had numerous back surgeries, and last week he was diagnosed with cancer. I have spent many days and many hours in hospital rooms, doctor's offices, and driving him. With his newest diagnosis I'm sure it will get only worse before it gets better. People always think enough to ask how he is doing and I appreciate it, but seldom ask about me (or our children). I know they mean well, but it would be nice to the thought of once in a while.

Ingrid,
Even if no one else seems to appreciate you, or treats you like you are invisible or sub-human--We know how important you are
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THANK YOU!
 
I think the proper response to the person stating they didn't have a chair/plate would be "That's OK. I'll wait while you get me one".
 
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