Transcript of Live Chat with Dante Tipiani, MSW

June 24, 2004

NYPL Welcome! Today we are chatting with Dante Tipiani, MSW, project director for The Family Caregiver Program & www.NetofCare.org (a web site of info and resources for family & professional Caregivers) at Beth Israel Medical Center's Department of Pain Medicine and Palliative Care.

We'll be talking about coping with your new role as a caregiver, how to relax, and addressing your feelings. Learn more about stress management techniques that will help you take care of yourself, while caring for your loved one.

NYPL Dante, welcome! Can you tell us a little bit about the services you offer and your website?

Caring4Caregivers_Dante Hi, and thanks for the welcome. Well, our programs offer information and resources for both family and professional caregivers of patients with serious and advanced illness. Net of Care features: Online support, education, information on daily aspects of caregiving, local and national resources searchable by type of illness, service needs and location, patient and caregiver E-newsletter health topics, such as, making health care decisions, communicating with health care professionals, pain management at home, managing medical emergencies, caregiver needs, stress management, hospice care and telephone support groups for caregivers.

Caring4Caregivers_Dante how is everyone doing today? If you like can you introduce yourselves...

NYPL Do you think it's normal to feel a little bit overwhelmed when caregiving is a role new to us?

Caring4Caregivers_Dante I totally think its normal to have a range of feelings when taking on this new role, such as feeling overwhelmed, stressed, feeling isolated, and burdened...often times, caregivers feel some of the symptoms of the care reciever, like depression, for example.

NYPL How important is self-care?

Caring4Caregivers_Dante Self care is very important...although it may seem impossible to find the time, you can't expect to put all of your energy into caring for your loved one without taking some time to care for yourself. Caregiving can lead you to neglect your own physical health, social life, and emotional well-being. It is very important to care for your self in order to provide better care for your loved one

NYPL What are some of the warning signs of depression?

Caring4Caregivers_Dante Depression is common in patients with a life-threatening disease, and often affects members of the patient's family as well.

NYPL What are some of the warning signs of depression?

Caring4Caregivers_Dante Symptoms of depression can include: Profound sadness, inability to experience joy... Withdrawal from friends, family and associates... Dramatic changes in normal behavior patterns of eating, sleeping, self-care or interacting with others ... A feeling that everything is hopeless, nothing is enjoyable and life is not worth living... Feelings of worthlessness and guilt ... Thoughts of suicide... Alcohol or other drug use ...

NYPL What are some of the common feelings that new caregivers might be experiencing?

Caring4Caregivers_Dante New caregivers commonly feel depressed, overwhelmed, scared, sometimes angry, depending on the relationship, & feeling alone.

NYPL My siblings are scattered all around and I'm worried that my sister will resent the fact that since she lives closest to my parents, and her in-laws, all of the family responsibilities are going to fall on her....

Caring4Caregivers_Dante There are different types of caregivers...and you seem to be a long distance caregiver...and many times alot of responsibilities do fall on the closest relative. However, if patients and families (caregivers) plan ahead of time and discuss issues and/or responsibilities / roles...feelings of resentment can be decreased or taken out of the picture all together.

NYPL Can you suggest some relaxation techniques?

Caring4Caregivers_Dante Oh yes, I can. Relaxation exercises are useful techniques to help relieve tension, decrease worry, improve sleep, and make you feel generally more at ease. These exercises use physical and mental activities, which focus attention on calming the body and mind, creating feelings of comfort. One is relaxed breathing.
Another is muscle relaxation and imagery/visualization.

NYPL You mention that feeling isolated can be pretty common. What should I do if I've lost touch with friends? Are there ways to mend fences???

Caring4Caregivers_Dante Isolation is so common and more prevelant among older adults... support groups are very helpful to address the social needs of caregivers. Sometimes caregivers feel they should be with their loved 24hrs, 7days per week....so we have started to use technology based approaches to reduce caregivers feeling of isoation and burden by using technology such as the telephone (tel support groups) and the Internet.

NYPL :-) Can we try some relaxation online?

Caring4Caregivers_Dante Sure, is everyone ready?

NYPL Yep. all ready!

NYPL Bibi YES!

Caring4Caregivers_Dante Let's begin with breathing.
Since breathing is second nature to us, we rarely think about the way that we breathe. Learning to breathe abdominally (through the diaphragm) can promote relaxation, which improves physical and mental health. Over time, most people begin to breathe by moving their chest and/or shoulders.

Okay, let's start. Find a comfortable position where ever your at. Begin to breathe by moving your chest and or shoulders.

Keep doing this a few times. Next, think how a baby breathes, you will see that they breathe by mvoing their belly, which is the most efficient way to take in oxygen and remove carbon dioxicde with the least effort.

Start breathing, taking regular deep breaths, in and out. When you take a breath in, the diaphragm flattens out, allowing the lungs more room to expand with air...when air is exhaled from the lungs, the diphragm returns to its domed shape.

Breathe out through your mouth, emptying your belly and letting it relax. As you breathe out, purse your lips to create a little resistance to the exhale to keep it slow, like gently blowing on a candle to make it flicker. Breathe out as slowly as you can, making each exhale last.

When you finish your exhale, wait quietly until your body naturally takes its next breath. Take your time.

Each time you breathe in, imagine a balloon filling with air, and each time you breathe out, imagine the balloon deflating.

It may help to put one hand on your stomach (over your belly button) and one hand on your breastbone. Watch to see which hand is moving more when you breathe in and out. Try to get the hand on your stomach to move more as you breathe, without forcing it.

Be sure to breathe in a slow, gentle, and natural way. If you become dizzy or light-headed, take smaller breaths and slow down.

You should practice diaphragmatic breathing frequently for short periods of time. At first, maybe 10-15 times per day for 1-2 minutes each time. Try to practice in different situations, such as lying down, sitting, standing, on a bus/subway. With practice, relaxed breathing can become a quick and easy tool to combat stress.

NYPL What support groups are available in NYC? Is there a central phone number people could call to get referrals?

Caring4Caregivers_Dante There are many support groups out there...depending on the type of illness -cancer, alzheimers, sickle cell...etc....Dept. for the Aging (DFTA) has a list of resources. Dial 311 from any phone in nyc to access more info or check out a listing of resources at www.netofcare.org.

NYPL When should we look outside our families for a little extra help or support?

Caring4Caregivers_Dante You can begin to look for help or support now that it's not a crisis and you would have the time and not feel so burdened / overwhelmed with balancing responsiblities.

NYPL I think many of us feel guilty if we can't do it all? Do you have any tips on handling guilt?

Caring4Caregivers_Dante First, let's list the symptoms of guilt. Guilt can come from feeling bad about thinking "unacceptable" thoughts. Try not to let yourself feel guilty about thinking such things and let them pass. Express guilty thoughts and feelings to a friend, support group, or mental health professional. Chances are, it will help you recognize that your guilty feelings are natural. If you have done something to feel guilty about, try to talk to the patient and seek his/her forgiveness. You will feel much better if you clear your conscience! Try to let go of your guilt and accept that you are doing the best you can under the circumstances. Most often, guilt comes from irrational thoughts, such as thinking that you have not done enough for the patient. Don't let your thoughts get the better of you. You must recognize that these are unjustified thoughts that are not necessarily based on any real evidence.

Everyone gets stressed out and needs a break sometimes -- most of all, caregivers! It is vital for you to take some time away so that you do not become overwhelmed by the stress that caregiving can bring. Even short breaks can restore and renew your emotional energy. However, taking breaks requires planning. Begin by arranging for alternative care for the patient for a short amount of time. Do something that you enjoy. As you and the patient become more comfortable, you can begin to increase the length of your outside activities.

Tips for planning time for yourself: Don't feel guilty about wanting or needing time away from your duties as a caregiver. Know that it is okay and necessary for you to have some time for yourself. Make a list of people whom you trust to care for the patient during your absence. Then ask someone. If you don't have anyone in your social circle, you can obtain a volunteer or hire someone for a short time. You may be able to locate such people through churches or synagogues, or local agencies.

Start off slowly, by making plans to spend a short time away from the patient. Don't let the patient make you feel bad about leaving. Having some time apart can make each of you feel a little more independent. Remember that as long as the patient has proper supervision, your absence will not put the patient at risk. Try to enjoy yourself and not worry too much while you are away. Allow yourself time to focus on you.

NYPL What kind of outside help is available?

Caring4Caregivers_Dante The range of help that is available depends on your resources (sometimes type of insurance), level of care that is needed and how advanced the illness is.

NYPL Have you tried meditation? Does it work?

Caring4Caregivers_Dante I have tried meditation but sometimes do not practice it as much as I used too, perhaps because we all live in a society, especially in NYC, where we are running from one thing to another ...at a fast pace....but meditation does work and can reduce levels of stress and help you cope with many aspects of life.

twinkly_winkly_star Have to go, so I'll check the transcript, but I wanted to ask ... I'm the middle child and perhaps the most responsible of my two siblings. How can I involve them in caregiving that might be necessary for our father in the future so I don't bear the entire burden? Is there a diplomatic way to request help? Thanks!!

Caring4Caregivers_Dante Asking family and friends for help can be an awkward and difficult thing to do. In fact, many caregivers avoid asking for help and end up trying to do everything themselves. You may find that once you take the step and ask someone for help, it is much easier than you expected. Many times, family members and friends are willing, but just don't know how to help.

Tips for asking family members or friends for help:
*Sit down with them in person or find a quiet time to speak on the phone.
*Review the list of patient needs.
*Specifically discuss areas in which you think they could help .
*Ask them if they would like to participate.
*Inquire about whether they would like to help out in a particular area.
*Clearly explain the tasks and what they could do to help. *Make sure that they understand exactly what would be helpful for you, as well as the patient .

What you might say when asking for help:

"Jane, I am having some trouble finding time to do everything I need to do to take care of my mom. I could really use some help with the cooking, watching her when I have to go pick up the kids from school, and doing errands. If you would be willing, I think you could help with the errands since you live nearby and pass the shopping center on your way home from work. Do you think you would be able to help out in this way?"

NYPL Can you tell us a little bit about FMLA? Is leave something available to all working people? Who would we call for more info?

Caring4Caregivers_Dante Great questions, as laws are ever changing....well, Family and Medical Leave Act (FMLA) basically is covered by employers and they must grant an eligible employee up to a total of 12 workweeks of unpaid leave during any 12-month period for one or more of the following reasons: for the birth and care of the newborn child of the employee; for placement with the employee of a son or daughter for adoption or foster care; to care for an immediate family member (spouse, child, or parent) with a serious health condition; or to take medical leave when the employee is unable to work because of a serious health condition.

I f you would like more information, visit the US Dept of Labor @ http://www.dol.gov/esa/whd/fmla/ or give them a call at 1-866-4-USWAGE.

NYPL Dante, I really appreciate you taking the time to talk with us today. Is there anything you'd like to add to what you've already shared?

Caring4Caregivers_Dante Yes, this is really fun for me, as we are entering a time of technology that can sometimes scare people from traditional approaches...at our program here at Beth Israel Medical Center we have achieved tremendous progress in addressing the needs of caregivers and providing useful resources through the close collaboration with a broad range of community-based service organizations and national not-for-profit agencies dedicated to addressing caregiver needs..for more information feel free to visit our websites at www.StopPain.org or www.NetofCare.org OR call me at 212-844-1713...Thank you so much Catherine!

NYPL Thanks again! Read the transcript for today's event at http://www.nypl.org/chat/ in a few days. Bye for now!