Caring for Yourself as a Caregiver

WebMD Live Events Transcript

As selfless as caregiving is, if you neglect your own needs and health no one benefits. But how do you make time for yourself without feeling guilty? How do you sidestep burnout? On Oct. 14, 2004, we examined the delicate balancing act of caring for yourself while caring for a family member with Suzanne Mintz, executive director of the National Family Caregivers Assn.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Support for this University course was provided by VistaCare.

MODERATOR:
Welcome to Caregiver University: "Learning to Care for Someone You Love." Your instructor today is Suzanne Mintz, president and co-founder of the National Family Caregivers Association, and author of Love, Honor and Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving. She joins us to discuss caring for yourself as you care for your loved one.

Suzanne, why did you co-find the National Family Caregivers Association?

MINTZ:
I am a family caregiver. My husband Steven has multiple sclerosis, and he was diagnosed back in 1974, when I was 28 and he was 31.

Needless to say, that diagnosis turned our lives upside down. Many, many years later a friend of mine was taking care of her mom, who had Parkinson's, and we were going to the beach and started talking about caregiving in a way we never had before.

We realized that despite my caring for a spouse with MS and her caring for her mom with Parkinson's, we were dealing with many of the same issues. We recognized and were frustrated that nobody recognized that we were impacted by our loved one's diagnosis, and by the fact that we had become family caregivers.

We've never been sure whether it was sunstroke or not, but it was during that respite weekend that we decided to do something about the problem. The National Family Caregivers Association (NFCA) was born two years later.

NFCA is a grass root organization that educates, supports, empowers, and speaks up for America's family caregivers. NFCA reaches across the boundaries of diagnosis, relationships, age, and focuses on the common issues of all family caregivers. Our mission is to improve the overall quality of life for caregiving families.

MEMBER QUESTION:
I've just lost my husband to cancer. Why, as caregivers, why do we never feel like we're doing enough, and why do we carry so much guilt afterward?

MINTZ:
First, my condolences. You're not alone in your feelings of guilt. So many family caregivers feel that way, and I think it's because what we really all want is a miracle. We want to wake up one morning and our loved ones are well.

Obviously that isn't in our power. So we think no matter what we do, it isn't enough. But in fact, we are all doing the very best we can and nobody can ask for more. Plus, guilt is not a particularly productive emotion. All it does is zap our energy; energy we need for caring for ourselves and our loved ones.

As family caregivers we need to recognize that what we are doing is an extraordinary effort, that we are doing tasks that used to be the sole province of health care professionals. We are providing care for lengths of time that never existed in the past.

We are juggling so many things because caregiving comes on top of everything else that we have been doing, whether it is working or maintaining a household, caring for kids, or volunteer work. The list goes on. So guilt is a negative emotion for family caregivers.

What I would advise everyone to realize is that they are doing as much as they can do, and nobody can ask for more. I'd also like to say that at NFCA, we have a bereavement kit that might be helpful. It was designed to help family caregivers who have lost a loved one go through that first very difficult year after passing, and it deals with the emotions that are unique to someone who has been a family caregiver.

You can obtain the bereavement kit at lastacts.org. If you send an email to info@thefamilycaregiver.org and ask about the bereavement kit, give us your address we will be able to get it to you.

"Getting a break from caregiving is vital to your own health and well-being. And your health and well-being is critical for the health and well-being of your loved one."

MEMBER QUESTION:
Is it a good idea to shift the loved one to another caregiver's home to give a time-out, on a reciprocal basis?

MINTZ:
We all need a break. If caregiving was your actual employment, you'd be entitled to vacation. So in terms of caregiving, we need to think of ourselves as being self-employed and be in charge of ordering our own vacations, as it were.

You can't give and give and give without refueling yourself. If you were driving down the highway and the gas tank went on, you wouldn't go very much further without pulling into a gas station, because you know the car would just stop. But we don't do that for ourselves.

We don't listen to the messages our minds and bodies are giving us. We so often feel guilty thinking about doing something nice for ourselves. But that's really counterproductive. Our loved ones rely on us. If we fall apart, who's going to care for them?

Caring for yourself is the very best present you can give your loved one. Having said that, how do we get some respite? I think we can look at respite as coming in a variety of sizes. Small respites, like Goldilocks and the Three Bears, the Baby Bear respite, is something that we can take pretty often.

For me, a warm bubble bath by candlelight can ease a lot of tension. And it doesn't take more than 15-20 minutes. Getting away, obviously, is harder, but I think is extremely necessary, because a change of scenery really does let you get out of yourself.

It's important to have a network of support, whether it's family or friends, or a home care service that you pay. But getting a break from caregiving is vital to your own health and well-being. And your health and well-being is critical for the health and well-being of your loved one.

MEMBER QUESTION:
My mother lives with my husband and me, and sometimes we really miss our privacy and the chance to get away. What is the answer for us?

MINTZ:
Getting away for a weekend or more is indeed the Papa Bear respite. It is not unusual, unfortunately, for one adult child to be providing all the care for a parent while the other siblings do nothing, or very little.

One of the things that is suggested by the professionals is to have a family meeting. It's important to have a third party there, somebody who's not emotionally involved. It could be a social worker that you're dealing with; it could be a member of the clergy the family is close to. The idea is to get everybody in the room so that thoughts and feelings can be expressed and so that problems can be resolved.

It may sound strange, but your siblings may not really understand exactly how hard caregiving is. Unless you live it, it's so outside the norm that most other people just don't have a clue. But in the meeting, you can remind your siblings that in order for you to continue caring for mom you need to recharge your batteries. And that your marriage needs some caring, too.

In my book, Love, Honor and Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving , I talk about family meetings and about respite. The book is available on our web site or through amazon.com.

MEMBER COMMENT:
One of my frustrations is the "pity" others feel because I choose to care for my son at home, rather than use an institution.

MINTZ:
Your statement really points up the fact that being a caregiving family truly sets us outside the norm. Those whose daily problems don't involve so much attention to activities of daily living don't have a clue.

Today, the strong trend is to care for children at home, to have more home- and community-based services available, and to mainstream them in school, when possible. The last thing you need is pity. You need understanding, and if you're like the rest of us, you could use some help.

Perhaps suggest to friends that you could join them in some activities if someone was able to stay with your son for awhile, or to pick up some of your tasks so you could have a bit of R&R time.

People forget that there are lots of ways they can help you. For example they can:

  • Cook a meal
  • Pick up the groceries
  • Mow the lawn
  • Take your car into the shop
  • Act as a handyman

There are all kinds of things people can do to help make our lives easier. Those who are willing to do that are our true friends.

"Remember, we do have the right to say no. We all do because we can't just give and give and give. If you do that, then the emotional love, the bonds, can break down."

MEMBER QUESTION:
How can I keep from getting impatient with my husband when he gets demanding, wanting something every few minutes?

MINTZ:
It's important to learn how to say no. Not everything is an emergency. Sometimes somebody can wait for an extra glass of water or to have the TV channel changed.

Caregiving is a relationship between the caregiver and the care receiver, and so it's important to set up rules everybody can live with. You're not a slave, you're his wife, and he, of course, is frustrated that he can't do what he used to. But by encouraging his independence, you can help his self-esteem and give yourself a break.

Of course I don't know the specifics of your circumstance, and it is always harder to develop a give-and-take relationship when your loved one is suffering from dementia or some other cognitive impairment. But assuming that's not the problem, I think it's important to create a balance between both persons' needs.

Remember, we do have the right to say no. We all do because we can't just give and give and give. If you do that, then the emotional love, the bonds, can break down. Then you're dealing with an additional problem. I hope this helps.

MEMBER QUESTION:
My mother is 77 and physically and mentally well, but she has always had a rather dependent personality. What can I do to encourage mom to do for herself while she is still able?

MINTZ:
If she's always been dependent, it's hard to break her of that habit. But if you explain to her that her demands are having a negative impact on your own family life, and that by not doing things she is capable of she is diminishing her own life, perhaps that might help. And, if you're able, perhaps you can retain the services of a geriatric care manager. These people, often social workers, are adept at evaluating senior situations and recommending solutions and finding community resources that might help.

The National Association of Professional Geriatric Care Managers, located in Tucson, Ariz., can get you in touch with their state chapters, who can then give you the names of people in your area. As with any other consultant, you need to check them out. A phone number for this organization is (520) 881-8008. Good luck.

MEMBER QUESTION:
Can you suggest some positive ways to enlist the help of siblings -- their neglect is hurting my parents emotionally.

MINTZ:
This is a major problem. In 99% of the circumstances, there is one person caring for a parent, and you've hit on something: the impact a sibling's lack concern has on the parent.

One thing to try and find out is if they're afraid. For some people, it is really hard to look at people who are aging and ailing; they'd rather remember how people were. But in protecting themselves, they are denying both their parent and themselves the ability to gain closure, which we all need to do with loved ones towards the end of life.

I don't think putting a guilt trip on them is going to work. But perhaps explaining how much your mom is hurting because they are staying away might have some effect. This is a hard nut to crack; it's a difficult problem. And the dynamics of each family is different.

Again, I mentioned the idea of the family meeting. But perhaps you could also get some advice from a psychologist or other health care professional that deals with geriatric issues.

MEMBER QUESTION:
I am 35 and caring for my 66-year-old mother, who has Parkinson's. How do I handle being so young and having to help my mom? And how can I handle putting off meeting a girl and living my own life without getting so upset?

MINTZ:
I heard from a young woman some months ago who was in her 20s who was caring for her mom who had had a stroke, and she was having a hard time understanding why her friends couldn't understand her current issues. And then she realized that they had no frame of reference, that what she was doing then was so outside the norm for other 20-year-olds.

You are in a similar situation. I think in caregiving, regardless of our age, it is essential that we maintain our own selves and I think that's especially true for someone as young as you.

The best thing I can suggest is to get some help so that you also have time to live the life of someone in their 30s. Of course, it's always easier said than done, but a very wise friend of mine, a former family caregiver, used to say that she believed everything we needed in the world was out there, but that we had to find it.

I think she meant we have to be proactive. We have to seek out what it is we need. We have to ask for help. We have to put away some of our pride and so does the person we care for, because they are the one who's going to have to accept help. It's not easy to do, and it doesn't necessarily happen overnight, but I know from personal experience that it's definitely possible. You have to want the solution so much that you make finding it a priority.

I just had an experience in my own life; Steven, my husband, who's in a wheelchair, recently stopped driving. The only place he drove was back and forth to work, but that was a big thing. In giving up the keys, he was giving up a significant amount of his independence, and of course it raised the issue: How was Steven going to get to work?

We tried a taxi service, but that was so expensive, it made no sense. But I was determined that we were going to find a way. One of our neighbors works just across the street from Steven, and so one day I went over and asked Arthur if he would be willing to drive our minivan -- which is handicap accessible -- and take Steven to work one day a week. He said he'd try it. Well, now Arthur is driving Steven twice a week.

We also went to a neighborhood party recently and met some guys who lived around the corner who, one of whom works maybe six, seven blocks away. I put a note out on our neighborhood listserv to see if there was anyone in the neighborhood that might drive with Steven and park in his spot, and the email we got back was from this guy we had just met at the party. Now he is driving Steven one day a week.

My point is that it took some effort; it took getting over some pride. There was also some luck involved, but we have now put in place a fairly easy mechanism so that Steven can continue to work. And the guys who are helping us feel like they're making a difference in somebody's life and have companionship when they drive to work.

It is possible to carve out some normalcy, but you've got to work at it. Good luck.

"We have to ask for help. We have to put away some of our pride and so does the person we care for, because they are the one who's going to have to accept help."

MEMBER QUESTION:
How does one "refuel" oneself most effectively?

MINTZ:
That's a very personal decision, because different things will do it for different people.

For me, during a very low spot, I found going to temple was very therapeutic. There was something about the repetitiveness of the service, the calm of the sanctuary, and the sense of being among a community of people, that helped give me strength. Other times it's making sure I get lots of exercise.

I get my nails done once a week, which brings me pleasure. It makes me feel I've done something just for me, because it doesn't benefit anybody else. Lying on the couch with a good book is for me a great symbol of relaxation. I'd really like to be lying on a Caribbean beach, but that's not in the cards, so the couch will have to do.

The point is that the activity of curling up with a good book is something that renews me. What renews you might be very, very different. The point is just to figure out what things give you pleasure, what things make you feel vibrant, and make some time for them.

MODERATOR:
Suzanne, do you have any final words for us?

MINTZ:
There's lots of good information at the NFCA web site, familycaregiver.org, so I invite you to visit. My own story runs through the book, along with lots of helpful hints, some of which I've shared here.

Most of all I want to remind you that caregiving is hard. It's often an emotional rollercoaster, and it puts our lives outside the norm. Having friends who are family caregivers can really help, because they've walked in our shoes and they understand.

On our web site we have a story project. It is a place where you can share your feelings and experiences, and list your needs and wishes, and you can also read the stories of other family caregivers and recognize you're not alone. Also by sharing your story, you will be helping us help you, because the stories help us explain what caregiving is all about to members of Congress.

It is very powerful when we can go meet with a Senator and go with stories from his state. So I would very much like you to share your story. It's in the, "Who Are Family Caregivers," section of the web site. The more stories we have, the larger the voice for family caregivers will be in the halls of Congress.

Best of luck to all of you. Thank you for the privilege of sharing what I have learned over the years.

MODERATOR:
Thanks to Suzanne Mintz, author of Love, Honor and Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving, for sharing her expertise with us.



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