This post is dedicated to two WWII veterans that live in my community and who are some of the best examples of thrivers that I know. One is a doctor, the other a genealogist and historian whose formal schooling ended with eighth grade graduation. I consider them my mentors and friends. I wish them peace, joy and happiness this Memorial Day weekend.
When I first started working in AIDS, it was a terminal illness. However, there were people that were living much longer than others. Research done in 1987 identified eight characteristics of those who lived longer, which became the core of the THRIVE Program:
1. They were realistic and accept their diagnosis and did not take it as a death sentence.
2. They had a fighting spirit and refused to be helpless/hopeless.
3. They changed lifestyles.
4. They were assertive and had the ability to get out of stressful and unproductive
situations.
5. They were tuned into their own psychological and physical needs -- and took take care of them.
6. They were able to talk openly about their illness.
7. They had a sense of personal responsibility for their health, and viewed their
health care provider as a collaborator.
8. They were altruistically involved with other persons with HIV.
The “Centre for Integrated Healing” in British Columbia, Canada developed a list of 10 Common Characteristics of those who have undergone spontaneous healing of advanced, untreatable cancer.
1. In spite of being told that their cancer is incurable, they have a deep belief that their body can heal itself.
2. They take control and assume a recovery program that is unique to them. They reclaim their own responsibility rather than solely relying on experts.
3. They reconnect with spirit, awakening long hidden desires and aspirations. They reconnect with authenticity to their feelings and values and decide to live them.
4. They deepen and bring honesty to their relationship with others.
5. A complete re-assessment of their lives is undertaken. They are willing to change. This often includes diet, lifestyle, career, goals and relationships.
6. Radical changes in diet have been closely associated with spontaneous remission. These changes usually include decreasing processed, refined foods and animal fats and consuming more fruits and vegetables or becoming vegetarian.
7. They take vitamins and supplements to help support their immune system.
8. They slow down. Taking time to relax and fully enjoy the gift of life. Often prayer or meditation becomes a regular practice.
9. They become in tune with their body and 'listen' for cues relating to energy, emotions and body signals that are a part of daily life.
10. They rejoin with social networks and experience the joy of being of service to others. Through their own healing, they help to heal others.
A 12-year study of managers at Illinois Bell Telephone, where a 50% reduction in workforce in the 1980's after deregulation and divestiture of its parent company, AT&T, found that not all managers responded to stress in the same way. Some in fact handled it quite well. The managers who coped the best shared three common attitudes. This mindset, along with physical exercise and support from friends and family, prevented stress-related illnesses in this group. The three characteristics were as follows:
(1) Commitment: Stress hardy individuals are very involved in life, rather than detached and isolated. They have a sense of purpose and meaning in their lives and are committed to being involved with people and situations around them.
(2) Control: People who deal best with stress believe they have some personal control over what happens in their lives. They tend to be active and try to have an influence on what happens to them, rather than being passive and powerless.
(3) Challenge: Those who are stress hardy look at life as a challenge. They believe you can learn from all your experiences, good or bad, and are willing to take calculated risks. http://www.healthfulchanges.com/newsletter042003.htm
These three lists have much in common. Central to all of them is not only the ability to change but also the belief that they could make the change and sustain it. As Charles Darwin wrote, It is not the strongest of the species that survives, nor the most intelligent; it is the one that is most adaptable to change.
As I was working on this post, I was e-mailing and talking to two WWII veterans, one of whom is 87 and the other 89. These men have faced any number of horrors, set backs, major loss and a host of struggles, including various illnesses. Yet if you met them, you would think they are much younger than their years. They always have a smile and a laugh. The older of the two has had significant hearing loss as a result of the war, coupled with a speech issue from childhood. When the computer came along, he thought that was a great way to tell his story. However, the internet was his tool to make sure people understood him. All of his e-mails have the same heading, “All is well.” Even though he never attended high school, he has done extensive historical research and has even written an autobiography.
My other friend, who is doctor and a scientist, continues to work as a doctor, but offers his services free to members of our community. He writes some of the most terse and funny e-mails I will receive on any given day.
Both of these men are an integral part of our community. What impresses me most about them is their continual understanding of the need to change and adjust to not only their aging bodies but to the world in which they wish to engage. Regardless of how long they live, they are making each day count for themselves and for those that enter into their orbit.
We do not thrive because we finally accomplish the impossible or overcome tremendous obstacles. We thrive because we mentally remain engaged with our problem long enough to find meaning that helps us accommodate to whatever happens to us. We do not make miracles just by rising to new heights. We live a wonderful life by searching for the miraculous in whatever life has made for us. The Beethoven Factor
Saturday, May 29, 2010
Wednesday, May 26, 2010
Take a Break: Memorial Day Activities
Memorial Day is viewed as the unofficial start of summer. The “in-season” prices begin at summer resorts and many hold the first BBQ of the season this weekend. It is also the time were those who have died in the armed services are remembered by parades and services at local cemeteries. Many people also choose this time for personal remembrances.
Memorial Day was begun after the Civil War, when many communities, in the North and South, set aside days to honor their war dead. The first official Memorial Day was observed on May 30, 1868, when graves of Union and Confederate soldiers at Arlington National Cemetery were decorated with flowers. Initially known as Decoration Day, festivities were carried out on May 30. Under President Nixon, the holiday was changed to the last Monday of May, thereby giving an opportunity for a three-day weekend. To learn more about this holiday, go to Memorial Day History.
This Wednesday’s Take a Break includes a choice of activities.
• Make some 5 pointed stars from a single sheet of paper and just one snip
• Figure out a fun BBQ menu. Looking for new recipes, try the food blogs for a change.
Our Best Bites
Smitten Kitchen
• Since many of the old gravestones are in need of cleaning, and often no descendants are on hand to do it, learn how to clean them, and maybe enlist a friend or your neighbors to help. You’ll learn a lot of local history that way. Resources for cleaning stones include:
CHICORA Foundation
Gravestone Preservation
National Park Service: U.S. Department of the Interior-Website includes a number of videos, webinars and text on Cemetery Conservation, including headstone cleaning, righting stones and landscaping.
Memorial Day was begun after the Civil War, when many communities, in the North and South, set aside days to honor their war dead. The first official Memorial Day was observed on May 30, 1868, when graves of Union and Confederate soldiers at Arlington National Cemetery were decorated with flowers. Initially known as Decoration Day, festivities were carried out on May 30. Under President Nixon, the holiday was changed to the last Monday of May, thereby giving an opportunity for a three-day weekend. To learn more about this holiday, go to Memorial Day History.
• Make some 5 pointed stars from a single sheet of paper and just one snip
• Figure out a fun BBQ menu. Looking for new recipes, try the food blogs for a change.
Our Best Bites
Smitten Kitchen
• Since many of the old gravestones are in need of cleaning, and often no descendants are on hand to do it, learn how to clean them, and maybe enlist a friend or your neighbors to help. You’ll learn a lot of local history that way. Resources for cleaning stones include:
CHICORA Foundation
Gravestone Preservation
National Park Service: U.S. Department of the Interior-Website includes a number of videos, webinars and text on Cemetery Conservation, including headstone cleaning, righting stones and landscaping.
Saturday, May 22, 2010
Condolences
When someone dies how do you help the family and close friends? Do you send a note, drop some food off or not do anything out of fear you might do something wrong? Is it okay to tell a mutual friend that someone’s father has died?
More and more people are so caught up in the “political correctness” of what is the “right thing” to do when someone dies that the family and close friends are often not getting the support and acknowledgement they need.
I remember years ago a friend related how their good friend’s brother had died. I asked him if he had gone to the funeral. His reply shocked me. “No, I wasn’t invited.” I then asked, “did they specify that the service was just for family?” This wasn’t the case, but for some reason my friend thought funerals were by invite only. “Well did you send a card?” No again. He, like many people, really didn’t have any idea how to respond to the situation and so did nothing.
There are very practical things people need when a loved one dies.
• All of the routines of daily life-food preparation, cleaning house, taking out the trash, dealing with the kids, making sure the pets are feed and walked etc. continue so pitching in where you can makes a difference.
• Offer concrete ways to help and not just “call me if you need me.”
• Assistance in planning a service, obituary, selecting a charity for donations, or even dealing with the various aspects of settling someone’s estate can make all the difference.
• Offer to answer the phone or make phone calls.
• In grief people need to be able to talk, so be a good listener
• Unless specified otherwise, attending a memorial service, wake or whatever activity is being held to honor the deceased is very helpful. Even if you don’t have a chance to talk to the family and close friends, just having people attend means a lot. Many of the families I’ve worked with will describe how impressed and comforted they were by the numbers of people that attended the service.
• Some people like to receive flowers, so if appropriate send them. Make a donation to a charity.
• Writing a well-crafted condolence note means a lot. Jane Brody, the Personal Health columnist for The New York Times, has written about the diagnosis and death of her much loved husband. Recently she has written a column about the condolences she received: Whether in a card, note, letter, phone message, hug or pat on the shoulder, some people seem to know instinctively how to show they care and will remember the deceased. What stands out most in these messages is their deeply personal quality. People who knew my husband in various walks of life (especially his advocacy for his beloved Prospect Park and his career as a writer for the musical theater) saw him in ways that had escaped me, because I was too close to have their perspective. By sharing these details, they have rounded out my memories of a life shared and separate from his — memories I will cherish for the rest of my life. The full column is available at
http://www.nytimes.com/2010/05/18/health/18brod.html
• Grieving doesn’t end in a week or a month. Being available in the months to follow is very important. Take them out for dinner or another activity can be very helpful, particularly when there are special anniversary or other dates that may have special meaning. Be willing to listen.
Recently a friend was talking about the death of her father, which had happened many years ago. What struck her the most was when she returned to work, no one offered her a condolence. A hug, a meaningful “I’m sorry for your loss,” helps more than you know.
Additional Resources
Helping Your Bereaved Friends from the American Hospice Foundation
Supporting a Grieving Person
More and more people are so caught up in the “political correctness” of what is the “right thing” to do when someone dies that the family and close friends are often not getting the support and acknowledgement they need.
I remember years ago a friend related how their good friend’s brother had died. I asked him if he had gone to the funeral. His reply shocked me. “No, I wasn’t invited.” I then asked, “did they specify that the service was just for family?” This wasn’t the case, but for some reason my friend thought funerals were by invite only. “Well did you send a card?” No again. He, like many people, really didn’t have any idea how to respond to the situation and so did nothing.
There are very practical things people need when a loved one dies.
• All of the routines of daily life-food preparation, cleaning house, taking out the trash, dealing with the kids, making sure the pets are feed and walked etc. continue so pitching in where you can makes a difference.
• Offer concrete ways to help and not just “call me if you need me.”
• Assistance in planning a service, obituary, selecting a charity for donations, or even dealing with the various aspects of settling someone’s estate can make all the difference.
• Offer to answer the phone or make phone calls.
• In grief people need to be able to talk, so be a good listener
• Unless specified otherwise, attending a memorial service, wake or whatever activity is being held to honor the deceased is very helpful. Even if you don’t have a chance to talk to the family and close friends, just having people attend means a lot. Many of the families I’ve worked with will describe how impressed and comforted they were by the numbers of people that attended the service.
• Some people like to receive flowers, so if appropriate send them. Make a donation to a charity.
• Writing a well-crafted condolence note means a lot. Jane Brody, the Personal Health columnist for The New York Times, has written about the diagnosis and death of her much loved husband. Recently she has written a column about the condolences she received: Whether in a card, note, letter, phone message, hug or pat on the shoulder, some people seem to know instinctively how to show they care and will remember the deceased. What stands out most in these messages is their deeply personal quality. People who knew my husband in various walks of life (especially his advocacy for his beloved Prospect Park and his career as a writer for the musical theater) saw him in ways that had escaped me, because I was too close to have their perspective. By sharing these details, they have rounded out my memories of a life shared and separate from his — memories I will cherish for the rest of my life. The full column is available at
http://www.nytimes.com/2010/05/18/health/18brod.html
• Grieving doesn’t end in a week or a month. Being available in the months to follow is very important. Take them out for dinner or another activity can be very helpful, particularly when there are special anniversary or other dates that may have special meaning. Be willing to listen.
Recently a friend was talking about the death of her father, which had happened many years ago. What struck her the most was when she returned to work, no one offered her a condolence. A hug, a meaningful “I’m sorry for your loss,” helps more than you know.
Additional Resources
Helping Your Bereaved Friends from the American Hospice Foundation
Supporting a Grieving Person
Wednesday, May 19, 2010
Take an Art Break: Aboriginal Art
Art is a central part of Aboriginal life and is intimately connected to land, law and religious belief. Connection to a person's homeland is deeply felt. Mick Dodson (former Aboriginal and Torres Strait Islander Justice Commissioner) has expressed this powerfully:
To understand our law, our culture and our relationship to the physical and spiritual world, you must begin with land. Everything about aboriginal society is inextricably woven with, and connected to, land. Culture is the land, the land and spirituality of aboriginal people, our cultural beliefs or reason for existence is the land. You take that away and you take away our reason for existence. We have grown that land up. We are dancing, singing, and painting for the land. We are celebrating the land. Removed from our lands, we are literally removed from ourselves. Aboriginal Art Online
I decided to try this in a workshop. Trial and error lead me to using Q Tips and toothpicks to create the dots, lines and traditional symbols. In fact, I ended up mixing some of the symbols of the AIDS movement with the traditional aboriginal art symbols to create a very unique design. It was not only a very calming experience, but I was able to express some of my feelings about the epidemic. Ultimately very healing.
Today’s art break is to make a picture in the style of Australian Aboriginal Art. Below are links to help you get started. Don’t limit yourself to paints. You can use colored pencils, markers and pens.
How to Make an Aboriginal Style Drawing
Traditional Aboriginal Art Symbols
How to Make Dotted Paintings
Friday, May 14, 2010
Finding Support On-Line
Support groups have been shown to help those affected by chronic and life threatening conditions. On-line groups are particularly useful, since it doesn’t matter what the weather’s like, if you have transportation or even what time of day or night it is. Before you participate in an on-line group consider the following:
• You will be able to interact with many people, even thousands at all hours of the day and night. However, not all members have your best interest at heart. The larger the group, the more likely some of these people will surface. On-line support groups are like any others in that there will be people you like and those that you don’t.
• Watch out for people trying to sell you something or claiming to be an expert. The “snake oil” salesmen hang around health care sites, particularly for those conditions where there is no effective treatment or cure. If it sounds to good to be true, it probably is. Check with your medical provider before trying something new.
A good article to read before signing up for a group is “What Everybody Ought to Know About Online Health Support Groups.”
There are at least two sites that are looking at collecting “outcome data,” what people are trying and what seems to be working. They are collaborating with doctors and various other medical groups and provide outcome information to site participants. These sites include:
Patients Like Me: Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Contact us if you're interested in working together to achieve our goals.
Our operating costs will be covered by partnerships with healthcare providers that use anonym zed data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care. We only share anonymized data with trusted partners and all our patient information is kept safe and secure.
Provides on-going support, treatment information etc for the following conditions: ALS/MND, epilepsy, fibromyalgia, chronic fatigue syndrome, HIV/AIDS, Mood conditions (anxiety, bipolar, depression, obsessive compulsive disorder and post traumatic stress disorder), Multiple Sclerosis, Parkinson’s Disease, organ transplants and Rare Diseases (Corticobasal degeneration, Devic’s neuromyelitis Optica, Multiple System Atrophy, Primary Lateral Sclerosis, Progressive Muscular Atrophy and Prograessive Supranuclear Palsy).
Cure Together-Open Source Health Research: CureTogether helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.
Alexandra Carmichael and Daniel Reda launched CureTogether in July 2008 to help the people they knew and the millions they didn’t who live in daily chronic pain. Starting with 3 conditions, it quickly expanded as people wrote in to request that their conditions be added to this ongoing study. CureTogether is currently funded by its founders and angel investment, as well as by book and product sales, clinic sponsorships of individual communities, opt-in patient recruitment for clinical trials, and a subscription-based Pro version of CureTogether (coming soon).
The quickest way to find an on-line group is to search using the condition name and support group. Some other places to look on-line are as follows:
Daily Strength: Network of on-line people sharing their advice, treatment experiences and support. Have 500+ groups for health issues and life challenges.
MD Junction: MDJunction is a Social Network that serves as a meeting place for people with health challenges, a comfort zone to help and get help. Today MDJunction is home to more than 630 Online Support Groups each dedicated to one health challenge, a place where thousands of patients meet every day to discuss their feelings, questions and hopes with like-minded friends. It is a proven way to find information, comfort, support and friendship with people who are in your spot and understand you best.
Some other social networking sites include:
Imedix: A more general social network for anyone who wants to talk about health. Users enter a question — like what to do about high blood pressure — and iMedix scans articles, videos and blogs that are ranked by other users on how helpful they are.
Inspire: Connects patients, families, friends, caregivers and health professionals for health and wellness support.
• You will be able to interact with many people, even thousands at all hours of the day and night. However, not all members have your best interest at heart. The larger the group, the more likely some of these people will surface. On-line support groups are like any others in that there will be people you like and those that you don’t.
• Watch out for people trying to sell you something or claiming to be an expert. The “snake oil” salesmen hang around health care sites, particularly for those conditions where there is no effective treatment or cure. If it sounds to good to be true, it probably is. Check with your medical provider before trying something new.
A good article to read before signing up for a group is “What Everybody Ought to Know About Online Health Support Groups.”
There are at least two sites that are looking at collecting “outcome data,” what people are trying and what seems to be working. They are collaborating with doctors and various other medical groups and provide outcome information to site participants. These sites include:
Patients Like Me: Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Contact us if you're interested in working together to achieve our goals.
Our operating costs will be covered by partnerships with healthcare providers that use anonym zed data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care. We only share anonymized data with trusted partners and all our patient information is kept safe and secure.
Provides on-going support, treatment information etc for the following conditions: ALS/MND, epilepsy, fibromyalgia, chronic fatigue syndrome, HIV/AIDS, Mood conditions (anxiety, bipolar, depression, obsessive compulsive disorder and post traumatic stress disorder), Multiple Sclerosis, Parkinson’s Disease, organ transplants and Rare Diseases (Corticobasal degeneration, Devic’s neuromyelitis Optica, Multiple System Atrophy, Primary Lateral Sclerosis, Progressive Muscular Atrophy and Prograessive Supranuclear Palsy).
Cure Together-Open Source Health Research: CureTogether helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.
Alexandra Carmichael and Daniel Reda launched CureTogether in July 2008 to help the people they knew and the millions they didn’t who live in daily chronic pain. Starting with 3 conditions, it quickly expanded as people wrote in to request that their conditions be added to this ongoing study. CureTogether is currently funded by its founders and angel investment, as well as by book and product sales, clinic sponsorships of individual communities, opt-in patient recruitment for clinical trials, and a subscription-based Pro version of CureTogether (coming soon).
The quickest way to find an on-line group is to search using the condition name and support group. Some other places to look on-line are as follows:
Daily Strength: Network of on-line people sharing their advice, treatment experiences and support. Have 500+ groups for health issues and life challenges.
MD Junction: MDJunction is a Social Network that serves as a meeting place for people with health challenges, a comfort zone to help and get help. Today MDJunction is home to more than 630 Online Support Groups each dedicated to one health challenge, a place where thousands of patients meet every day to discuss their feelings, questions and hopes with like-minded friends. It is a proven way to find information, comfort, support and friendship with people who are in your spot and understand you best.
Some other social networking sites include:
Imedix: A more general social network for anyone who wants to talk about health. Users enter a question — like what to do about high blood pressure — and iMedix scans articles, videos and blogs that are ranked by other users on how helpful they are.
Inspire: Connects patients, families, friends, caregivers and health professionals for health and wellness support.
Wednesday, May 12, 2010
Take a Break: Bring Nature Close to You
On Mother’s Day, my husband surprised me with a gorgeous hanging plant. While in and of itself this was wonderful, it was where he placed it that made such an impact.
A bird feeder hangs just outside my office window. I can watch the birds come and go, plus chase away the occasional squirrel that shows up, from November to the beginning of April. Once the bears awake from their naps, it’s time to take the feeders down. It definitely creates a void. We’ve tried having hummingbird and Oriole feeders but it just doesn’t seem to attract all that much. My husband hung the plant where the bird feeder was. I couldn’t believe how much it lifted my spirits when I walked in my office. I’m also hoping that it will attract some summer birds.
So this week’s art break is to bring nature close to you. You can do it through window boxes or by hanging a plant outside a window where you spend a lot of time.
Figure out where you’d like to place something and ask your local garden shop about what is going to work best for your planting zone and for the particular area you’ve chosen. A lot of sun can impact plant selection as much as too little. How much does it need watering and will it be easy for you to do this on a regular basis?
Don’t shy away from trying upside down gardening. A friend that was quite ill last summer, knew she didn’t have the strength to garden, but she wanted to have fresh tomatoes. She purchased one of the upside down tomato plant holders and she not only had plenty of tomatoes, but she did not experience the blight that destroyed so many of the gardens in my town last year.
Sunday, May 9, 2010
Living Well Workshops
If you’ve been following the entries on Caregiving, you may notice that I recommended enrolling in a Living Well or Healthy Living Workshop. Just about every state has one, as do many countries. These programs are usually free. Each one will have its own “flavor,” but the core idea is the same-help people with chronic conditions manage their health and achieve the best possible life.
Workshops are usually once a week for six weeks and the instructor is usually someone living with one or more chronic conditions. Some states are providing programs in different languages. The core components of these programs include: healthy eating, relaxation techniques, managing fatigue, low impact exercising, managing medications, problem solving, goal setting and working with your health professional. Caregivers are also welcomed at these workshops. It used to be that programs were run for people with a particular diagnosis, such as heart disease. However, research indicates that people do better if the workshops are not limited in this way. The fact is, as we age, we are more likely to have multiple conditions.
There is still an important role for condition specific support groups-either on-line or in-person. This is an excellent way to learn about your condition(s), treatments, side effects, research and valuable resources.
The best way to find out what programs are available for your state or country is using Google with your state/country’s name and the term “Living Well.” If that doesn’t provide you with a link, try “Healthy Living Workshop.” Ask your health provider. If none of these yield a program, contact your state’s health department, which can be reached by one of the following means: Call 202-371-9090, website www.astho.org or check the front pages of your local phone book.
Workshops are usually once a week for six weeks and the instructor is usually someone living with one or more chronic conditions. Some states are providing programs in different languages. The core components of these programs include: healthy eating, relaxation techniques, managing fatigue, low impact exercising, managing medications, problem solving, goal setting and working with your health professional. Caregivers are also welcomed at these workshops. It used to be that programs were run for people with a particular diagnosis, such as heart disease. However, research indicates that people do better if the workshops are not limited in this way. The fact is, as we age, we are more likely to have multiple conditions.
There is still an important role for condition specific support groups-either on-line or in-person. This is an excellent way to learn about your condition(s), treatments, side effects, research and valuable resources.
The best way to find out what programs are available for your state or country is using Google with your state/country’s name and the term “Living Well.” If that doesn’t provide you with a link, try “Healthy Living Workshop.” Ask your health provider. If none of these yield a program, contact your state’s health department, which can be reached by one of the following means: Call 202-371-9090, website www.astho.org or check the front pages of your local phone book.
Saturday, May 8, 2010
Caregiving Part III: We Both Have a Chronic/Serious Illness
It often happens that both parties in a relationship can be ill at the same time, have the same diagnosis (they met at a support group) or the caregiver becomes very sick after taking care of a loved one for an extended period of time. I’ve also seen situations where a parent is living with a serious illness and an adult child is diagnosed with something just as critical or even worse. So how does one cope when more than one of you need a caregiver?
A very common reaction is, “whose going to take care of me?” People come to depend on their caregiver, so if they become ill, it’s extremely frightening. It’s not surprising that when we feel sick we become self-absorbed. It can be very hard to step outside of our selves and recognize that other people have needs as well. Left unchecked, it can quickly become a contest of “I have it the worst.”
It is also not about ignoring your own needs because you think your spouse/partner is sicker. This attitude can be lethal. A caregiver, who helped organize a support group for other caregivers, told me that nearly all of the spouses that were part of the original group had either died or had been diagnosed with major illness. Interestingly, nearly all of the people they were caring for were still alive.
Recognize that you both have very important needs and they can’t be ignored. Patience and taking the time to develop some new skill sets can go a long way. Step one is open and honest communication. Problem solving is key.
• Each person needs to describe their view of the situation. This is the time to discuss fears, concerns, and underlying issues.
• Actively listen to what the other person is telling you. Understand what their concerns are and repeat them to make sure you are hearing them correctly.
• Try to develop a strategy that meets both of your needs
The latter can be very hard and may seem impossible. Using a third person can be very helpful and reduce stress in the process. A social worker, care manager, counselor or even medical provider can be very helpful.
Many of the recommendations and resources identified in the previous posts on caregiving are just as applicable to this situation: Part I Taking Care of you And More Resources and Recommendations
There may be as many ways to deal with this situation as there are couples in it. I met a couple, where one spouse had Parkinson’s Disease and the other diabetes. They found that attending each other’s support groups helped them understand the other person’s condition and it expanded support opportunities from participants in both groups. Their motto was, “we take turns.”
While working in AIDS, I came across this situation a lot. Fortunately, AIDS service organizations (ASOs) became adapt at helping by providing chore services, buddies to help with shopping, keeping appointments, and a myriad of other services. Check with your provider, the social worker at the hospital and the condition specific organizations (e.g. American Cancer Society) relevant to the two of you and see what resources might be available.
Some things to consider, that you may not have thought about:
• If you are each other’s power of health attorney, the person who can make medical decisions for you in the event you are unable to do so, consider giving this responsibility to someone else.
• Complete advance directive forms and register them. Go to www.caringinfo.org/stateaddownload to learn more about this.
• Get help as soon as possible. Make things as easy as you can. As if it wasn’t enough taking care of a husband with Parkinson’s Disease, one woman had her adult daughter return home with a major life threatening cancer. Overwhelmed, the first thing this woman did was to register for Meals on Wheels. Her thought was not having to figure out meals would make life easier. As it turned out, her daughter did very well and has stayed to help with Dad. They continued the Meals on Wheels.
• Enroll in a “Living Well” or “Healthy Living Workshop.” These workshops and seminars go by different names, but the goal is the same- to teach techniques that help you manage your disease, as well as give you a new sense of well being. Many of these programs are connected with Stanford School of Medicine’s Chronic Disease Self-Management Program. Subjects covered include: 1) techniques to deal with problems such as frustration, fatigue, pain and isolation, 2) appropriate exercise for maintaining and improving strength, flexibility, and endurance, 3) appropriate use of medications, 4) communicating effectively with family, friends, and health professionals, 5) nutrition, and, 6) how to evaluate new treatments.
I’ve been part of my state’s program and have seen how much it helps people. You can learn more about such programs by asking your local hospital, medical provider and checking your local newspaper. These programs are now available worldwide and some are even available on-line.
• Use the “Getting What You Need Checklist.” It highlights many of the things you might need as well as where to call or e-mail to obtain them.
• Keep a Personal Health Notebook and make sure it’s up to date. At a minimum this should include:
- Diagnosis
- Medications you are currently taking, including dosages, as well as medications you have taken and those you are allergic to.
- Contact information for health providers, name and number of the pharmacy you normally use, hospital contact information, and who to call in the event of emergency.
• Be gentle with each other.
• Do the best you can and remember that your best is more than good enough.
SOME MORE RESOURCES AND INTERESTING READING
For Mother’s Day, Send Your Mom a Dozen Roses, your Caregiver Sister Two Dozen!
Caregiver Survival Questionnaire
A very common reaction is, “whose going to take care of me?” People come to depend on their caregiver, so if they become ill, it’s extremely frightening. It’s not surprising that when we feel sick we become self-absorbed. It can be very hard to step outside of our selves and recognize that other people have needs as well. Left unchecked, it can quickly become a contest of “I have it the worst.”
It is also not about ignoring your own needs because you think your spouse/partner is sicker. This attitude can be lethal. A caregiver, who helped organize a support group for other caregivers, told me that nearly all of the spouses that were part of the original group had either died or had been diagnosed with major illness. Interestingly, nearly all of the people they were caring for were still alive.
Recognize that you both have very important needs and they can’t be ignored. Patience and taking the time to develop some new skill sets can go a long way. Step one is open and honest communication. Problem solving is key.
• Each person needs to describe their view of the situation. This is the time to discuss fears, concerns, and underlying issues.
• Actively listen to what the other person is telling you. Understand what their concerns are and repeat them to make sure you are hearing them correctly.
• Try to develop a strategy that meets both of your needs
The latter can be very hard and may seem impossible. Using a third person can be very helpful and reduce stress in the process. A social worker, care manager, counselor or even medical provider can be very helpful.
Many of the recommendations and resources identified in the previous posts on caregiving are just as applicable to this situation: Part I Taking Care of you And More Resources and Recommendations
There may be as many ways to deal with this situation as there are couples in it. I met a couple, where one spouse had Parkinson’s Disease and the other diabetes. They found that attending each other’s support groups helped them understand the other person’s condition and it expanded support opportunities from participants in both groups. Their motto was, “we take turns.”
While working in AIDS, I came across this situation a lot. Fortunately, AIDS service organizations (ASOs) became adapt at helping by providing chore services, buddies to help with shopping, keeping appointments, and a myriad of other services. Check with your provider, the social worker at the hospital and the condition specific organizations (e.g. American Cancer Society) relevant to the two of you and see what resources might be available.
Some things to consider, that you may not have thought about:
• If you are each other’s power of health attorney, the person who can make medical decisions for you in the event you are unable to do so, consider giving this responsibility to someone else.
• Complete advance directive forms and register them. Go to www.caringinfo.org/stateaddownload to learn more about this.
• Get help as soon as possible. Make things as easy as you can. As if it wasn’t enough taking care of a husband with Parkinson’s Disease, one woman had her adult daughter return home with a major life threatening cancer. Overwhelmed, the first thing this woman did was to register for Meals on Wheels. Her thought was not having to figure out meals would make life easier. As it turned out, her daughter did very well and has stayed to help with Dad. They continued the Meals on Wheels.
• Enroll in a “Living Well” or “Healthy Living Workshop.” These workshops and seminars go by different names, but the goal is the same- to teach techniques that help you manage your disease, as well as give you a new sense of well being. Many of these programs are connected with Stanford School of Medicine’s Chronic Disease Self-Management Program. Subjects covered include: 1) techniques to deal with problems such as frustration, fatigue, pain and isolation, 2) appropriate exercise for maintaining and improving strength, flexibility, and endurance, 3) appropriate use of medications, 4) communicating effectively with family, friends, and health professionals, 5) nutrition, and, 6) how to evaluate new treatments.
I’ve been part of my state’s program and have seen how much it helps people. You can learn more about such programs by asking your local hospital, medical provider and checking your local newspaper. These programs are now available worldwide and some are even available on-line.
• Use the “Getting What You Need Checklist.” It highlights many of the things you might need as well as where to call or e-mail to obtain them.
• Keep a Personal Health Notebook and make sure it’s up to date. At a minimum this should include:
- Diagnosis
- Medications you are currently taking, including dosages, as well as medications you have taken and those you are allergic to.
- Contact information for health providers, name and number of the pharmacy you normally use, hospital contact information, and who to call in the event of emergency.
• Be gentle with each other.
• Do the best you can and remember that your best is more than good enough.
SOME MORE RESOURCES AND INTERESTING READING
For Mother’s Day, Send Your Mom a Dozen Roses, your Caregiver Sister Two Dozen!
Caregiver Survival Questionnaire
Wednesday, May 5, 2010
Take a Break: Paint on Glass
While you can go to a craft store and spend quite a bit of money on special glass paints, you can also make your own. Nail polish works just fine. You can also mix acrylic or liquid tempera paints with white glue. Make sure it’s thick so it won’t run. You will need to finish these off with a clear glaze, available at most craft store, if you want your project to last more than a day or two.
Instead of a paintbrush, cotton swabs and toothpicks work very well. Clean your glass with soap and water and dry thoroughly before applying the paint.
If you don’t like what you’ve painted, wipe it off with a paper towel and start over.
Sunday, May 2, 2010
Caregiving the Challenges and Ways to Deal with Them: Part II Other Suggestions and Resources
Keeping in mind the number one recommendation for caregivers-taking care of yourself-the following additional suggestions and resources are included:
• The only person you can change is yourself. However, sometimes by changing how you respond to someone’s behavior, they will start treating you, as well as the situation, differently.
• Accept help. Don’t try to go it alone. Even if you think there is no one around that can be of assistance, there are many avenues to pursue, such as community action agencies, churches, area agencies on aging etc. You’ll find little sympathy if people offer to help and you turn them down, and then complain about all you are doing.
• When someone asks what they can do, give them specific tasks. You can register for a free website “Lotsa Helping Hands” that can assist you in arranging for volunteer help. If you don’t feel you have the time or skills to maintain the site, ask someone to do it for you. It makes things a lot easier when people ask what they can do if you say “please register at Lots of Helping Hands.” That way, as you think of things that are needed, include them and people can help as they are able too.
• If there is other family, but they aren’t stepping to the plate consider the following options:
- calling a family meeting and seeing if there is a way to divide the labor; use a third party (such as social worker, case manager) to help navigate the meeting if you think there is a potential for conflict
- if they can’t donate time, which is often true since people live in so many different parts of the country, can they provide financial support for respite care, adult day care, meals or some other task that would reduce your workload. A family member, such as a student, may be the perfect person to run a Lotsa Helping Hands site.
Don’t be surprised if family doesn’t volunteer, yet complains about what you are doing. I hear this a lot from caregivers. Don’t obsess about it.
• Get training. Depending on the diagnosis and treatment, many hospitals, clinics, visiting nurses groups and condition specific organizations offer training to deal with the various behaviors and issues that arise because of the disease or its treatment. Ask the providers involved in treating the patient where such training is available in your area.
• If they are cognitively able, talk to the person about their negative behaviors. While you can assure them of your love, you can also be clear that you don’t appreciate when they do x,y or z.
• Listen to what have they have to say. A woman with a spinal cord injury that I was working with became very negative in her approach to friends and family. It turned out this was rooted in the way she felt others perceived her, “a crip in a chair.” In this situation, we talked a lot about how to change their attitude by changing her approach.
• Talk to the person’s medical provider. Could some of their behavior be a result of medications or the disease itself?
• Connect with the condition specific organization (e.g. American Cancer Society). Your issues are most likely not unique. These organization also offer support groups.
• Use the Healing the Whole Person Handout
• Use the “Getting What You Need Checklist.”
RESOURCES
• National Institute on Aging Caregiver Guide (Alzheimer’s)
• National Family Caregivers Association
• Well Spouse Association The Well SpouseTM Association, a nonprofit 501(c)(3) membership organization, advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. We offer peer-to-peer support and educate health care professionals and the general public about the special challenges and unique issues "well" spouses face every day.
• National Alliance for Caregiving Established in 1996, The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.
• American Association of Retired Persons (AARP) Resource Page Caring for Parents
• The only person you can change is yourself. However, sometimes by changing how you respond to someone’s behavior, they will start treating you, as well as the situation, differently.
• Accept help. Don’t try to go it alone. Even if you think there is no one around that can be of assistance, there are many avenues to pursue, such as community action agencies, churches, area agencies on aging etc. You’ll find little sympathy if people offer to help and you turn them down, and then complain about all you are doing.
• When someone asks what they can do, give them specific tasks. You can register for a free website “Lotsa Helping Hands” that can assist you in arranging for volunteer help. If you don’t feel you have the time or skills to maintain the site, ask someone to do it for you. It makes things a lot easier when people ask what they can do if you say “please register at Lots of Helping Hands.” That way, as you think of things that are needed, include them and people can help as they are able too.
• If there is other family, but they aren’t stepping to the plate consider the following options:
- calling a family meeting and seeing if there is a way to divide the labor; use a third party (such as social worker, case manager) to help navigate the meeting if you think there is a potential for conflict
- if they can’t donate time, which is often true since people live in so many different parts of the country, can they provide financial support for respite care, adult day care, meals or some other task that would reduce your workload. A family member, such as a student, may be the perfect person to run a Lotsa Helping Hands site.
Don’t be surprised if family doesn’t volunteer, yet complains about what you are doing. I hear this a lot from caregivers. Don’t obsess about it.
• Get training. Depending on the diagnosis and treatment, many hospitals, clinics, visiting nurses groups and condition specific organizations offer training to deal with the various behaviors and issues that arise because of the disease or its treatment. Ask the providers involved in treating the patient where such training is available in your area.
• If they are cognitively able, talk to the person about their negative behaviors. While you can assure them of your love, you can also be clear that you don’t appreciate when they do x,y or z.
• Listen to what have they have to say. A woman with a spinal cord injury that I was working with became very negative in her approach to friends and family. It turned out this was rooted in the way she felt others perceived her, “a crip in a chair.” In this situation, we talked a lot about how to change their attitude by changing her approach.
• Talk to the person’s medical provider. Could some of their behavior be a result of medications or the disease itself?
• Connect with the condition specific organization (e.g. American Cancer Society). Your issues are most likely not unique. These organization also offer support groups.
• Use the Healing the Whole Person Handout
• Use the “Getting What You Need Checklist.”
RESOURCES
• National Institute on Aging Caregiver Guide (Alzheimer’s)
• National Family Caregivers Association
• Well Spouse Association The Well SpouseTM Association, a nonprofit 501(c)(3) membership organization, advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. We offer peer-to-peer support and educate health care professionals and the general public about the special challenges and unique issues "well" spouses face every day.
• National Alliance for Caregiving Established in 1996, The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.
• American Association of Retired Persons (AARP) Resource Page Caring for Parents
Saturday, May 1, 2010
Caregiving the Challenges and Ways to Deal with Them: Part I Taking care of Self
After taking your parent, spouse, friend or family member to an appointment, tidied up and made sure they had dinner before you went to care for your own family, they comment, “You never spend any time with me.” Sometimes it seems no matter what you do, it’s not enough or it’s not right.
Keep in mind that caregiving is an act with consequences.
Fear, worry, your reactions to them, their behavior towards you can build up to such a point that you find yourself thinking “I’ll never be free until they die.” You are not a bad caregiver, or an uncaring person, if you have such thoughts, and in fact, they are common. If you find you want to act on negative feelings that could result in harm to the person call for help immediately.
In the next few posts, I will include tips and resources on caregiving.
The number one rule of is TAKE CARE OF YOURSELF. If you don’t you can become sick and instead of one patient there are now two. The medical literature is filled with studies of illnesses of caregivers. In fact, I just read a study about how family members caring for relatives with dementia can become severely depressed. I see this all the time, particularly when a person has a long debilitating disease.
Ways to take care of you include:
• Make time to do the things you like on a regular basis. Include activities where someone cares for you, such as a massage, getting your nails or hair done.
• Eat a healthy diet-mainly plant based with five servings of fruits and vegetables
• Exercise-a 30 minute walk around the block, on a treadmill, or Stairmaster will go a long way in clearing your head
• Meditate-even a few minutes a day is a help
• Sleep-try to get the recommended 8 hours a night.
• Take a Break-Every Wednesday is “Take a Break” day on Healing Whole www.healingwhole.blogspot.com Lots of ideas for short breaks, day long activities, things to do with the person you are caring for and more.
• Join a caregiver’s support group (on-line or in person), have at least one friend you can talk to. Don’t let yourself become isolated.
• Choose how you are going to be a caregiver, based on what you can reasonably do
• Accept your role as caregiver and not become a “victim” to it
• Keep a positive attitude as much as possible.
• Recognize the signs of Caregiver Stress (feeling sad, uncaring or angry, no energy, trouble sleeping, eating to little or too much, not taking care of your own needs) and seek help as quickly as possible.
• Use the Healing the Whole Person Handout
Keep in mind that caregiving is an act with consequences.
Fear, worry, your reactions to them, their behavior towards you can build up to such a point that you find yourself thinking “I’ll never be free until they die.” You are not a bad caregiver, or an uncaring person, if you have such thoughts, and in fact, they are common. If you find you want to act on negative feelings that could result in harm to the person call for help immediately.
In the next few posts, I will include tips and resources on caregiving.
The number one rule of is TAKE CARE OF YOURSELF. If you don’t you can become sick and instead of one patient there are now two. The medical literature is filled with studies of illnesses of caregivers. In fact, I just read a study about how family members caring for relatives with dementia can become severely depressed. I see this all the time, particularly when a person has a long debilitating disease.
Ways to take care of you include:
• Make time to do the things you like on a regular basis. Include activities where someone cares for you, such as a massage, getting your nails or hair done.
• Eat a healthy diet-mainly plant based with five servings of fruits and vegetables
• Exercise-a 30 minute walk around the block, on a treadmill, or Stairmaster will go a long way in clearing your head
• Meditate-even a few minutes a day is a help
• Sleep-try to get the recommended 8 hours a night.
• Take a Break-Every Wednesday is “Take a Break” day on Healing Whole www.healingwhole.blogspot.com Lots of ideas for short breaks, day long activities, things to do with the person you are caring for and more.
• Join a caregiver’s support group (on-line or in person), have at least one friend you can talk to. Don’t let yourself become isolated.
• Choose how you are going to be a caregiver, based on what you can reasonably do
• Accept your role as caregiver and not become a “victim” to it
• Keep a positive attitude as much as possible.
• Recognize the signs of Caregiver Stress (feeling sad, uncaring or angry, no energy, trouble sleeping, eating to little or too much, not taking care of your own needs) and seek help as quickly as possible.
• Use the Healing the Whole Person Handout
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