Caring for the Caregiver
Welcome to American Pain Foundation’s (APF) PainAid chat with Kris Robinson PhD, FNPbc, RN. We’re very pleased to have Kris as our guest speaker tonight. The topic for this evening is "Caring for the Caregiver.” We will be discussing the role of caregivers and the importance of self care. In addition to her professional expertise, Kris is also a caregiver for her husband who has chronic pain.
Kris Robinson is a doctoral-prepared nurse educator, clinician and researcher. Her research interest focuses on health disparities that occur as a result of chronic pain experience of Hispanics of Mexican American descent and their families; and, ultimately interventions to increase quality of life and optimum functioning in this population. She is currently the Assistant Dean for Graduate Education at the University of Texas at El Paso School of Nursing.
She has been a POPAN (Power Over Pain Action Network) advocate for the past two years and is able to intertwine her community service, teaching and clinical practice with advocacy activities. She has published articles in the local paper and has been a guest several times on the University radio station – KTEP. She is active in providing pain management information in Spanish and English at local health fairs. Dr. Robinson is an associate professor of nursing and a family nurse practitioner. To maintain clinical skills, she volunteers part-time in a pain management clinic with Dr. Jose Monsivais at the Hand and Microsurgery Center of El Paso.
This chat is provided for educational and information purposes only. APF is not engaged in providing medical advice or professional services. This information should not be used for diagnosing or treating a health problem. Always consult with your health care providers before starting or changing any treatment.
Caregivers often play a vital role in the support and treatment of persons with pain. Caregivers may take the lead particularly in early management and treatment of friends and family.
According to a 2004 national survey by AARP and the The National Alliance for Caregiving, nearly 23 million households are currently home to a caregiver. Being a caregiver for a loved one can bring people closer together, giving them a sense of giving back to the person they are caring for. But, it can also be a source of increased stress, anxiety and depression, at times. It can also have a physical, emotional, and financial impact on the caregiver.
Being a caregiver for a loved one can be a very challenging role - often times a role that is unexpected. It doesn’t come with a “how to" manual. It is often a full time job with unending responsibility. Many times, it is spouses caring for one another, but it can also be parents caring for adult children who have become disabled with painful conditions or children caring for parents – a very common situation today.
Even when a Caregiver is glad to be able to help a loved one and feels rewarded by their work, the stress of care giving and the endless responsibility, household chores, errands, and maintaining family life can become overwhelming. In order to be at their best for meeting the challenges of care giving, it is necessary, in fact, it is mandatory that Caregivers take care of themselves as well.
We hope to provide some useful information and resources for those of you who are caregivers and some insight into the role of the caregivers for those of you who might require care.
Kris will be making a presentation sharing some of her personal experiences as a caregiver followed by a short question and answer period. At the end of the question and answer period, we will provide some information and links to resources here at the American Pain Foundation and elsewhere which will be great tools in your arsenal in this battle with pain.
Please remember that this is a protocol chat. If you have a question for Kris, please indicate by typing a “?” and if you have a comment, please so indicate by typing a “!”. The Pain Aid moderators will be keeping track of your place in line to ask questions or make comments and will call on you in turn following her initial presentation.
Please have your question already typed and ready to send when you are called upon. When you are finished with your question or comment, please type “ga” (stands for “go ahead”) or “end.” All of this will help us to keep the chat moving right along and will allow us to get the most number of questions answered for you.
Ok! I’ll turn it over to Kris so she can share her experience as a caregiver. Go ahead, Kris.
Kris: Thank you, MaryAnne, for the fine introduction to myself and tonight’s program. Many of you have seen the YouTube video (http://www.youtube.com/watch?v=XK0HS03QLoQ&feature=channel_page) that details my experience. As you know, I am a nurse, and educator, a provider, and a researcher. However, until recently, I never identified myself as a caregiver despite the fact that:
• My husband has a chronic condition that causes him to make and pass kidney stones every day of his life for over 20 years
• He is unable to work and rarely able to help with household chores
• I am the only breadwinner in my family and up to one-third of my income goes directly to paying for medical bills.
It was only when I was invited to participate in a focus group of caregivers at the last POPAN (Power Over Pain Action Network) training that I identified as a caregiver when someone mentioned that his/her spouse is a shadow of the person they married. It was as if we all married imposters – certainly we married spouses that were equal partners in play and love and work. Yet, no longer.
I may not dress and feed my sweetheart, but neither do we dance or travel. I participate by watching him waste his immense talent and feel helpless and frustrated and saddened when I see that he no longer can stand up to paint or sit at his potter’s wheel and create beauty. We met dancing; yet, we no longer dance and a short walk once every few weeks or a trip to the grocery store is all the physical activity we share.
Just as my husband’s chronic pain is invisible, so is my role as a caregiver. Chronic pain is invisible: as such the person with pain experiences inner turmoil as he or she is stigmatized by being a victim of an unbelievable chronic illness. The invisibility leads to desolation and isolation as symbolized in a painting by my husband. So, too, is the caretaking of the caregiver of a person with pain.
Like the person with pain, the caregiver must re-construct their identity as a spouse, a lover, etc. This, as you know personally, is difficult to do.
Troy and I have had many struggles and what has helped us the most is seeking help from a counselor. This outside person helped me see that when Troy withdrew, I felt abandoned and that Troy was afraid of disappointing me so he would never tell me when he could not do something. This began our journey towards communicating and negotiating so that each of our own needs is met.
I am more comfortable in answering questions than I am in talking so I will be asking PA_Carolina to open up for comments and questions. As ideas arise, I will share them.
BMurdough: Kris, that’s so much for sharing your experience. Can you share some of the ways you take care of yourself so you can then care for your husband?
Kris: Thanks, Brenda. Like the majority of us, I am guessing, I often do not take the best care of me. I tend to work 10-16 hour days to keep from thinking about my responsibilities. On the other hand, I used to dance once or twice a week, I try the gym a couple of times a week, read novels, and walk with friends. Sometimes it is difficult to make myself go and do things when Troy is housebound – especially on the weekends.
Dwbh: Do you think that having a sense of humor is the most important thing when care giving?
Kris: Well, it certainly helps. However, we all need to do what works best for ourselves. I do miss laughing and then try to engage Troy for some good belly laughs.
NoSpammer: Thanks. Wow….abandonment…Yes, this resonates with me. Thank you for sharing your expertise with us, Dr. Robinson. As a woman who has focused so much of her life’s energy advocating for underprivileged people. I feel so fortunate to be asking you: Who will help me as a poor, disabled person of color caregiver for my same-sex, autistic partner when no one else will? We have no family and every place gives me the name of someone else to call (who then gives me the name of someone else to call, etc.). I am in constant extreme pain which hasn’t been properly/adequately diagnosed and I’m overwhelmed, but I have to believe there must be accessible resources for us. I’m in need of care giving so maybe we can start there. Who is offering caregiver for the economically disadvantaged caregivers in the NW? Thanks again for being our champion.
Kris: That is a tough question – first, it’s difficult when we consider ourselves negatively. I always tend to ask myself -- when will I be good enough – good enough to be loved, appreciated, taken care of, etc., etc. I have come to realize that it is my responsibility to reach out and make friends and build my own family (non-blood relatives) so that I can give and take – it takes time. So, my advice to you is to find a counselor – someone to speak with; then start developing your support group. I know it is tough and we all struggle. I wish you luck.
LadyT: What advice can you give to those that might be new to care giving?
Kris: Realize that you go through the stages of grief – denial, anger, etc., etc. I think I am still in the denial and anger phase  . Most importantly, reach out to others Iike you are doing tonight and find what you need to do to take care of yourself.
StaceJohnson: In response to Kris’ question about leaving a spouse alone: Yes, it is very difficult to leave my wife alone to do things that I want to do. I feel guilty for doing it, even though I know I need alone time or time with friends.
Kris: So true, Stace. However, my guess is that you are not doing your spouse a favor by feeling guilty. Troy and I negotiate – he tells me when he can do something – and I give him permission to tell me when he has had enough. It has allowed us to do small things together. And, last Sunday, I took time out for a pedicure – and being away from home re-energized me so I had much more patience and understanding to give when I got home.
DebPas: My roommate and I both have chronic intractable pain. The National Caregivers Association has good advice, but we have to move and cannot pack and no one has time these days. Any suggestions? We cannot walk, bend or do much. Where can you get help to pack to move and things like that when you have no family?
Kris: Call 211 – The Social Service information line. You may also try some local churches or scout associations.
DocPatMac: I’m a male retired physician with chronic intractable pain, care giving for my 80 year-old mother. Recently, her condition has deteriorated. I’m not finding much help in my area – other than my therapist. Any suggestions about respite (for me) so that I can get out and go to get my own medical care? I’m spending so much time with her that I’m neglecting me. Money is really tight now, too! How can I get past her New England stoic attitude and get her to see that her main issue right now is depression? That is what is causing this clinginess and fear of being alone – at least in my humble opinion.
Kris: You do have it tough. Have you checked into adult care? Here in El Paso, I know that one of the local church service groups provides respite. This is a tough question because I do not know where you are and much else. You, too, may want to call 211. Sorry, I cannot offer more help. Perhaps after the chat you can get some ideas from the other participants.
Gheetar319: In Iowa, I have visiting nurse home care. They can also help with personal care, too. They get a grant for people in my income bracket (low – SSDI). We have bus service also for those who can’t afford regular. They come to your home and take you where you need to go. They help you pack, but don’t move you.
DocPatMac: There is a church organization, but I have no idea how to contact them. My therapist is running it down with someone in her agency for me and should know by Friday.
Kris: Thanks, Gheetar. That information helps. Sometimes it takes having the right amount of energy to search and to find the right person to ask.
Kbartucca7154: If Doc is in the New England area…there are home caregivers…that Mass health will cover.
DebPas: The National Caregivers Association is quite helpful which was recommended to us by APF (American Pain Foundation).
Kris: Thank you for your suggestions.
Kbartucca7154: Why is it so hard to accept help from the people who meet you and say – “Let me know what I can do for you.”? Why can’t they just come over so we can take that nap or shower? Why do we have to call them?
Kris: You need to worth that out on your own. I like Harvill Hendrix and his suggestions for self-care. There are other books as well.
Dwbh: What do you feel is the most rewarding part of care giving?
Kris: Oh, wow – It is different at different times. I suppose it is when Troy and I are able to do something when I did not expect us to interact. We are making an effort for him to acknowledge his accomplishments during the day – instead of saying – I laid in bed all day. And, I have made the effort to acknowledge when we are engaged or physically doing something – It helps both of us with self-esteem and creates a closeness that is far too easy to lose.
LadyT: I care for my 84 year-old father-in-law who has severe dementia. My husband is an only child and he works out of state through the week. How do I get him to understand that with my chronic pain…that this is becoming too much for me to handle? Any suggestions?
Kris: You need to tell him. Be specific and ask him to repeat until you know that he gets it. My favorite saying: It is not what is said in a relationship that kills it, it is what is not said. If he has dementia, you may need the help of his provider and seek adult care – respite for you.
LadyT: I have searched for respite care and the only in our area – the cost is too much. Thank you.
Kbartucca7154: Do you know if Medicare pays family members to care for a family member?
Kris: No, I do not.
Darkstarz: What is the most important thing for me to do and or say for my wife who is my caregiver?
Kris: Ask her what you can do for her. Every morning Troy brings me coffee in bed. Find little things that she would appreciate and that you can do.
Stacejohnson: Darkstarz – My wife has a tendency to be moody and snappy when she’s in pain – and sometimes that’s hard to deal with. I don’t know if that’s the case with you, but, if it is, it’s probably worthwhile to acknowledge those times and offer an apology. I know it helps me when my wife does that.
Kris: I see that you have worked out a perfect solution. I am usually the one that is the complainer – so it’s Troy that needs to put up with me and all I need him to do is listen.
Turtl: I used to think of taking care of myself as the caretaker as taking hours here and there away from my loved one to do things for me. A nurse told me that it doesn’t have to be that way. It can be something as small as a cup of tea alone or a short walk to clear your mind. It is just giving yourself a break in the stress of it all. Once in a while it can be longer, but the short ones count, too.
Kris: Excellent points. Thank you, Turtle. And, remember, the more you take care of yourself, the more you can do for your loved one. My son taught me an accountability/inevitability exercise. It works to help you take care of yourself.
First, you find an accountability partner – someone who will make sure you follow through on your actions. Next, identify something that you want to change and give yourself a reasonable time limit. For me, I want to go to the gym three times a week for the next month. Then, you determine what will happen if you do not follow through. For example, today, I spoke with my son, Michael, and decided that I would not watch TV for a week if I did not go to the gym.
So I will text him when I am at the gym and if I do not go, he must turn off the TV if I’m watching it – for the next week. The point is that your accountability partner helps you to create the change you need to take care of yourself… and it works!
MaryAnne: Thank you, Kris, for sharing such an informative and helpful chat this evening. To read about some of Kris’s advocacy work with our Power Over Pain Action Network, click here (http://www.painfoundation.org/Publications/PCN08fall.pdf) and read page 3. We have some additional tips and resources to share with you as well.
Here are some Tips for Caregivers:
1. Be sure to maintain a healthy diet - It's easy to fall into poor eating habits when you're extremely busy. Make an effort to have proper meals and to limit junk food snacking - you'll need to replace whatever your busy lifestyle takes out of you with real nutrition, not just empty calories. And at the most basic level remember to eat something. Don't skip meals; you will need your strength.
2. Exercise is important - As good for your mind as it is for your body, exercise is key to maintaining your stamina while care giving. Exercise can be as simple as three or more brisk 20-minute walks a week or as involved as joining an exercise class or gym.
3. Find ways to relax and have fun - Caregivers need down time to recharge. Meditation, music or just taking in a few slow deep breaths can be relaxing. And be sure to do activities you enjoy.
4. Sleep is not optional - Sleep is restorative. It gives your body a chance to repair itself and your mind a chance to recharge.
5. Keep your own Medical and Dental appointments - Making time for check-ups is a priority and will help you maintain your good health.
6. Take a break - Go out to lunch with friends, go see a movie, or go shopping – if a longer break is needed, take a weekend or even a week for you, if possible.
7. Stay in touch with friends and family - Staying connected is important - isolation can lead to depression. So be sure to call or visit those you love.
8. Maintain your interests and activities - This can be a great way to unwind and leave behind the responsibilities of care giving for a short period of time.
9. Recognize signs of stress - If you can realize that you’re feeling stressed and take a break, you can avoid becoming burned out.
10. Asking for and accepting help is necessary - You can delegate some tasks and take a break.
Here are some additional Resources. Many are found at our website at www.painfoundation.org
American Pain Foundation – Caregiver Information and Resources
http://www.painfoundation.org/page.asp?file=library/caregiver.htm
American Pain Foundation’s PainAid Online Community –
New Discussion Board for Caregivers - http://discuss.painfoundation.org/topiclist.aspx?cbbsid=60
Discussion Board for Military/Veterans and Their Caregivers - http://discuss.painfoundation.org/topiclist.aspx?cbbsid=7
Caring Bridge
http://www.caringbridge.org/
Caring Bridge offers Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery. The websites are personal, private and available 24/7 and help ease the burden of keeping family and friends informed.
CareCentral for Caregivers
http://www.carecentral.com/painfoundation
In collaboration with HealthCentral Network, the American Pain Foundation offers a powerful, private way to help caregivers cope. Caregivers can create their own site and organize their care giving online.
Centers for Medicare & Medicaid
www.medicare.gov/caregivers
The Centers for Medicare and Medicaid provide an extensive website with information for family members who care for Medicare and Medicaid patients.
Family Caregiver Alliance – National Center on Caregiving
http://www.caregiver.org/caregiver/jsp/home.jsp
Family Caregiving 101
http://www.familycaregiving101.org/about/
National Family Caregivers Association
Telephone: 800-896-3650
Web address: http://www.nfcacares.org
Practical Tools for Caregivers
http://caregiver.org/caregiver/jsp/content/pdfs/FCA-Harford-Practical%20Tools-Caregivers.pdf
Taking Care of YOU: Self-Care for Family Caregivers
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=847
Resources for Injured Service Members Families
http://www.nmfa.org/site/DocServer/Wounded_Servicemember7-06.pdf?docID=6703
Wounded Warrior and Family Support
http://www3.ausa.org/webpub/deptfamilyprograms.nsf/byid/kcat-6dck7f
We would like to invite everyone to take advantage of the wonderful resources here at the American Pain Foundation. The chat room you are in tonight is part of our PainAid Online Community. We have daily chats, Monday-Friday at 11:00am EST, as well as evening chats Mondays at 9:00pm EST and Wednesday at 7:00pm EST. The PainAid discussion boards are also available to you 24/7 for support from your fellow pain patients, caregivers and medical professionals.
Our home page (www.painfoundation.org) has numerous resources, publications, opportunities for advocacy and a great pain information library.
Thank you all for coming this evening. We will be posting a transcript of this chat on our home page and on the PainAid discussion boards for your convenience.
You are all welcome to stick around and chat amongst yourselves. Good night, everyone!
Updated by pa_Carolina1 on 19/02/2009 08:44
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