Caregivers face burnout when caring for family members

Dorissa McCalister-Carnell
Family Caregiver
(Showing family pictures)
Here’s a picture of my mom and myself. This was on a Sunday morning, now I’m thinking it was an Easter morning. I see the shadow, I think my Dad was taking the picture. And this is us on our way to Greater Faith. And I want to say circa—19—I want to say around ’67 maybe, ’66 or ’67. I was a big kid so it’s hard to tell. I was always tall, so two or three, that’s about right.
(Talking to mother)
Let me get the blood pressure cuff and we’re going to take your blood pressure this morning. Is that all right? Is that ok?
(Interview)
I became a family caregiver originally when my daughter was born. More recently when my mother was diagnosed with Alzheimer’s.
(Reading blood pressure)
It’s been low in the morning and it goes to about normal during the day. She’s been on blood pressure medication since I was in grade school. So they took her off of that and they expected it to shoot up, and it didn’t, thank God.

Kathy Kelly
Executive Director, Family Caregiving Alliance
Caregivers still remain largely women. The vast majority are women, but there’s more men that are starting to assume care responsibilities. We find that in large, extended families—most typically Hispanic, African-American, and Asian families—tend to have extended families that are able to care for the person longer in the home. There are about five million family caregivers in California.
A caregiver is someone who provides practical support to a friend or a relative, and it can be as light as helping do shopping or housework, or pay some bills. And it can be as meaningful and complex as handling multiple kinds of chronic conditions and really providing personal care.

Rosemary Turner
Family Caregiver
Beverly and I, we went to school together. We lived in a neighborhood where the schools were about five blocks away. And we’d walk to school together. And, one day, since I was so social—as you can probably tell, I like to talk a lot, I had to stay after school. I had to write on the chalk board 500 times “I will not talk in class.” So I said “Bev,” I said, “You go on home. And tell Mom that I have to stay after school.” So when I got through with that I went home and Mom says “Well, where’s Beverly?” and I said “Well, I told Bev to come home, Mom.” And that’s Beverley was—she got turned around and she was about two blocks away. Apparently she had been going around in circles. And that has just, I will never forget it.

Dorissa McCalister-Carnell
Family Caregiver
My day usually starts anywhere between 5:30 and 6:00. I get up I come down—I have a two story house and my mother’s room is downstairs, and my daughter’s room is upstairs. So I come downstairs first, I check on Mom, make sure the temperature in her room—especially now that it’s getting colder—the temperature is right. So I need to turn on the heater, make sure she’s straight, then I go upstairs, check on Kylea. And because Kylea goes to school—that’s my daughter—I change her first. Start getting her washed up and ready for school

Rosemary Turner
Family Caregiver
My daily routine starts out in the morning. I get up before Beverley does. I get her breakfast ready. Do her lunch. Then give her a shower. And then lay her clothes out, and then she’ll get dressed, come in and have her breakfast with her coffee.

Dorissa McCalister-Carnell
Family Caregiver
Halfway through that I come back downstairs, check on Mom. Sometimes she’s asleep still, sometimes she’s not. If she’s not then I take that time to change her diaper and give her her medicine. Get her comfortable. Turn her over —because she has to be adjusted, hopefully every two to two and a half hours if she’s not asleep.

Rosemary Turner
Family Caregiver
And then I’m doing some other little things I need to in the house. And then when it’s time for her to come, I bring her to school.

Dorissa McCalister-Carnell
Family Caregiver
We have hospice nurses, because Mom’s in hospice. Hospice nurses come a few times a week. So if she’s coming then it takes the bathing off of me, and then I can come and try to focus on other parts of the house. That’s my “relaxation” time.

Kathy Kelly
Executive Director, Family Caregiving Alliance
When you look at caregiving there is prolonged stress that is involved with caregiving. Particularly caregiving that is around very complex or stressful care situations. And so, prolonged stress really does affect health over the long-term. In many instances we see cases where there are clinical symptoms of depression—health conditions that you may have prevented get exacerbated. So the impact of prolonged stress is a huge factor for caregivers.

Rosemary Turner
Family Caregiver
Basically I do it all. I do it all. Her social worker Marla did suggest an agency for me. And she said “Rose, you should really do it.” And at this time I don’t really feel that I need it, but I’m going to take her suggestion and look into it, just in case, because I may need a back up one day.

Dorissa McCalister-Carnell
Family Caregiver
I have recently been told that I was burnt out. I didn’t realize that I was burnt out. I was diagnosed just—today is Wednesday, so I’m going to say two weeks from this Friday—with Lupus and Vitiligo. No, you can’t see it, I just ran upstairs, and that’s what I was doing, I was covering my little spots. So when the doctor looked me in my eye and asked me how many hours of sleep do I get, I was actually embarrassed to answer him. Because the answer is two, maybe three, four on a good night, hours of sleep. And that’s how I’ve lived my life. Especially the last nine years that Mom has been here, almost nine now. But that’s what you do. I’m wired that way. I’m supposed to get up every two hours because I need to check to see that she’s ok. I need to check to see if somebody’s diaper needs to be changed. You know, so, to be told that I was burnt out—whatever do you mean? That was foreign to me. So I’ve had to re-evaluate and redefine my definition of the word “stress.”

Rosemary Turner
Family Caregiver
My only biggest concern in this is if I should become ill. That really is a big concern of mine right now. If something should happen to me that Beverley is placed in a stable environment where she will not be mistreated. And I am hoping I will be able to stay active enough in Beverley’s life as possible. But I’ve got to think ahead because I’m also getting older, and make sure that Beverly is well taken care of. That is my main…

Dorissa McCalister-Carnell
Family Caregiver
(Looking through photos)
I like this picture—this is her feeding Kylea. Her beautiful girl—she always called her “her beautiful girl.” And “pretty girl. Pretty girl.”
(Interview)
I don’t think you can describe to another person whose never been —whose never walked in your shoes—what it’s like to get up every morning and, basically, take a deep breath and brace yourself before you go into your mother’s room because you don’t know what you’re going to find. So she’s been in hospice now a year and almost three months. I say ‘I love you’ everyday. We’re a real I-love-you-mushy-mushy kind of family. That’s just how we are, and I love that. So there’ll be no regrets. There’ll be no ‘I wish I could have done this.’ I am doing everything that I can do to make sure my mother is comfortable. And I know that she knows that. So I’m good. I’m good.

For more on family caregivers check out another story in this series.

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