“Always scrutinize your own shortcomings. Ignore the faults of other people. Keep this attitude: ‘Whether they are pure or impure, it is none of my business!’ Be your own teacher; keep a strict check on yourself. That is sufficient.”
--Tulku Urgyen Rinpoche (1920-1996)
I am always struggling with this, always trying not to be offended by what others do, but know, deep down, that as others make mistakes, aren’t good hosts or guests, are inconsiderate drivers, or don’t live up to my expectations in many ways, that I am just as bad, and probably worse. To someone else I am the inconsiderate driver or guest, the irascible host, the brusque clerk, the impatient shopper standing in a long line at the register.
My blog posts, then, are for my own benefit, so that I can learn to mind my own business, to recognize and try to improve my own shortcomings and faults, and to help others the best I can. No one is perfect. As Tulku Urgyen Rinpoche said about the traits and motives of others, whether pure or not: “It is none of my business!”
Thursday, September 30, 2010
Sunday, September 19, 2010
Home care-giving: a nurse’s story
Justine (not her real name) provides home care for a select population. As visiting nurse, Justine has previous experience with patient and family education through time spent as a hospital rehabilitation nurse. This article is meant to explore Justine’s personal story and does not represent the opinions of the nursing agency for which she works. The goal of reporting this information is to provide a first person experience from a professional to those in the process of providing family care so that family caregivers can better understand what is typical and when to seek additional support from professionals.
Initial fears
Every family that embarks on the process of caring for a family member has specific fears. While every family has different fears, Justine outlined some of the top issues for us:
Relating to family caregivers
Listening is a key skill for visiting nurses in aiding the family caregiver. As the visiting nurse builds a relationship with the primary caregiver, he or she learns what the pressure points are. An easy way to help is to ensure that the home health aide comes at a time where the family member has plans instead of during a strict daily shift that does not accommodate the personal needs of the primary caregiver. For example, the primary care giver indicates that they used to enjoy having lunch with their grandkids, but there is no time for this anymore. The visiting nurse can arrange for the home health aide to cover lunch time on Fridays so that the primary caregiver can enjoy this time out with her grandkids. This ensures coverage for the patient, and much needed time-off for the caregiver is maximized. The visiting nurse has assisted in both goals just by listening and responding.
Justine also indicates that one of the easiest issues to solve is to reassure the family that they are doing a good job. She always tries to compliment the family and remind them of this as she leaves after her visit. By saying something such as “you are doing a good job, he is lucky to have you” she supports both the caregiver and the patient. Justine knows that if the family support stops, the whole house falls apart. Her goal is to help both the patient and the caregiver.
This nurse finds that it is hard to be critical of family members because they are doing the best they can with the information given. For example, if the family member has been performing an incorrect procedure or having the patient move around in an incorrect manner, yet the patient is happy and content and there have been no adverse effects of the caregiver’s actions, it might be better to suggest that the fix be started at that time, going forward, and reinforce that the caregiver is doing a good job in caring for the patient. Belittling or reprimanding the care giver for the error would not help the patient in the end, nor would it benefit the morale of the caregiver, of, by extension, the rest of the family. She indicates that it is a very tough role to be 100% right in every instance, and she finds that caregivers are always doing the best they can at the time.
Learning about the patient’s condition
Her work as a rehabilitation nurse, and her education, trained Justine well for her visiting nurse role. The goal of the rehabilitation department was to prepare a patient to go home after a catastrophic incident. From her studies Justine also found that Knowle’s principles of adult learning also comes into play when working with patients and families. Justine knows that talking is not enough, she also need to provide information in writing, and experience is the best teacher. As such, she recommends educational resources that are reputable can provide the family valuable information. She suggests several types of online resources:
Finding professional services
Justine’s company offers a multidisciplinary approach, which includes staff member specialists in such diversified fields as social work, nursing, therapy, psychiatry, diet, pharmacy, and nurse practitioner. After initial contact, each patient is evaluated and services appropriate to the case are recommended by each discipline specialist. This practice is unusual, insofar as most agencies only have a nurse and social worker on staff. In those instances, the nurse performs assessments of risk areas and, if the statistics for a patient are out of a certain range of travel, the company will outsource a specialist provider. Within pre-arranged travel parameters, however, the nurse will provide all care. As such, families may want to ask their service provider if they are to receive care from staff or outsourced personnel. A downside of the practice by Justine’s company is that some patients do not want 4-5 different people coming into their home, as oftentimes elderly patients are worried (with good reason) about being scammed. A general rule of thumb is that a hospital related agency is more likely to have more staff members of various disciplines than a private community agency.
Initial fears
Every family that embarks on the process of caring for a family member has specific fears. While every family has different fears, Justine outlined some of the top issues for us:
- Specific medical procedures that need to be done for the patient, such as administering drugs via needle. Some medical interventions are unnerving for lay people. Discussing this issue with nursing staff helps relieve the stress and helps family members get services to assist with the procedures that they are uncomfortable providing.
- Dependency and not being able to meet the needs of the patient. This can be addressed through the thoughtful treatment of the family by the caregivers. Positive feedback from a visiting nurse will allow the family to build confidence in their situation.
- Fear of talking about personal things in front of the patient. One of the most difficult discussions is opening up the conversation about death. While some patients want everything done to keep them alive, others don’t. If the patient already has a plan, it needs to be posted for all of the staff coming into the home, so that they have access to it. Alternatively, if there is no plan and the nurse opens the discussion, the patient may be relieved that someone has brought the discussion out into the open.
- Fear of death or finding someone dead. Discussing this issue with nursing staff helps relieve the stress for family members and helps the nurse prepare the family for required services, such as hospice (or funeral) care when needed.
Relating to family caregivers
Listening is a key skill for visiting nurses in aiding the family caregiver. As the visiting nurse builds a relationship with the primary caregiver, he or she learns what the pressure points are. An easy way to help is to ensure that the home health aide comes at a time where the family member has plans instead of during a strict daily shift that does not accommodate the personal needs of the primary caregiver. For example, the primary care giver indicates that they used to enjoy having lunch with their grandkids, but there is no time for this anymore. The visiting nurse can arrange for the home health aide to cover lunch time on Fridays so that the primary caregiver can enjoy this time out with her grandkids. This ensures coverage for the patient, and much needed time-off for the caregiver is maximized. The visiting nurse has assisted in both goals just by listening and responding.
Justine also indicates that one of the easiest issues to solve is to reassure the family that they are doing a good job. She always tries to compliment the family and remind them of this as she leaves after her visit. By saying something such as “you are doing a good job, he is lucky to have you” she supports both the caregiver and the patient. Justine knows that if the family support stops, the whole house falls apart. Her goal is to help both the patient and the caregiver.
This nurse finds that it is hard to be critical of family members because they are doing the best they can with the information given. For example, if the family member has been performing an incorrect procedure or having the patient move around in an incorrect manner, yet the patient is happy and content and there have been no adverse effects of the caregiver’s actions, it might be better to suggest that the fix be started at that time, going forward, and reinforce that the caregiver is doing a good job in caring for the patient. Belittling or reprimanding the care giver for the error would not help the patient in the end, nor would it benefit the morale of the caregiver, of, by extension, the rest of the family. She indicates that it is a very tough role to be 100% right in every instance, and she finds that caregivers are always doing the best they can at the time.
Learning about the patient’s condition
Her work as a rehabilitation nurse, and her education, trained Justine well for her visiting nurse role. The goal of the rehabilitation department was to prepare a patient to go home after a catastrophic incident. From her studies Justine also found that Knowle’s principles of adult learning also comes into play when working with patients and families. Justine knows that talking is not enough, she also need to provide information in writing, and experience is the best teacher. As such, she recommends educational resources that are reputable can provide the family valuable information. She suggests several types of online resources:
- Seasonal illness sites that educate on symptoms and treatments for illnesses in general;
- Search engines that allow you to research medications;
- Sites that allow you to research a specific disease and the most reputable are those run by well-known not for profit associations that support a specific disease. They provide information on community relations, research on the disease, and disease progress and treatment routes.
Finding professional services
Justine’s company offers a multidisciplinary approach, which includes staff member specialists in such diversified fields as social work, nursing, therapy, psychiatry, diet, pharmacy, and nurse practitioner. After initial contact, each patient is evaluated and services appropriate to the case are recommended by each discipline specialist. This practice is unusual, insofar as most agencies only have a nurse and social worker on staff. In those instances, the nurse performs assessments of risk areas and, if the statistics for a patient are out of a certain range of travel, the company will outsource a specialist provider. Within pre-arranged travel parameters, however, the nurse will provide all care. As such, families may want to ask their service provider if they are to receive care from staff or outsourced personnel. A downside of the practice by Justine’s company is that some patients do not want 4-5 different people coming into their home, as oftentimes elderly patients are worried (with good reason) about being scammed. A general rule of thumb is that a hospital related agency is more likely to have more staff members of various disciplines than a private community agency.
Monday, September 6, 2010
Reading for Caregivers
Just a short entry today due to the holiday. Here is further reading on family caregiving:
First person experiences with caregiving:
The new book Keeper chronicles the experience of Andrea Gillies, a caregiver of an Alzheimer's patient who was her mother-in-law. Leave a comment on the publisher web page for the chance to win a free copy of the book.
Passages in Caregiving discusses the emotions a family caregiver encounters on their journey. Gail Sheehy cared for her husband for 17 years. In addition to learning about the book on the web link here, there are many video clips of TV interviews to watch (look for the Author tab).
Scholarly works on caregiving:
The Cultures of Caregiving is an anthology of articles recommended for both families and professional caregivers. This book suggests ways to overcome the conflicts that may come up due to the differing goals of family and medical staff.
Aging Familes and Caregiving is a research book of compiled articles from international authors and is geared toward aiding professionals in understanding a family's values and wishes. While it is expensive, the table of contents and pieces of the work are viewable via Google book search.
We will have one more article on caregiving, highlighting the experiences of a visiting nurse, before moving on to the topic of using one's job to serve others.
First person experiences with caregiving:
The new book Keeper chronicles the experience of Andrea Gillies, a caregiver of an Alzheimer's patient who was her mother-in-law. Leave a comment on the publisher web page for the chance to win a free copy of the book.
Passages in Caregiving discusses the emotions a family caregiver encounters on their journey. Gail Sheehy cared for her husband for 17 years. In addition to learning about the book on the web link here, there are many video clips of TV interviews to watch (look for the Author tab).
Scholarly works on caregiving:
The Cultures of Caregiving is an anthology of articles recommended for both families and professional caregivers. This book suggests ways to overcome the conflicts that may come up due to the differing goals of family and medical staff.
Aging Familes and Caregiving is a research book of compiled articles from international authors and is geared toward aiding professionals in understanding a family's values and wishes. While it is expensive, the table of contents and pieces of the work are viewable via Google book search.
We will have one more article on caregiving, highlighting the experiences of a visiting nurse, before moving on to the topic of using one's job to serve others.
Wednesday, September 1, 2010
Family caregiving: a personal story
Connie (not her real name) has been caring for her mother for almost a year. More and more her mother needed assistance with getting around. Connie and her family investigated alternatives and found that back surgery was highly recommended as a solution for their mother so that she could have her independence back. Connie’s mom was a perfect candidate for this surgery. She would be in the hospital for 4-5 days.
However, the surgery did not deliver the independence that they had planned. A couple of curve balls later and Connie is providing 24X7 care for her mother. She and 5 other family members have experienced different levels of care giving over the past months. They supported their mother (and grandmother) in the hospital by rotating visits to time with meals so that they could ensure their mother ate regularly. They also needed to advocate for their mom because she was very hard of hearing and very disoriented from multiple surgeries and infections. Her hearing condition affected not only her day-to-day interaction with staff. After surgery because she was unable to hear and would be disoriented from the procedure, the family was always concerned that their mom would give incorrect signals to the recovery room staff.
After 3 surgeries (2 to remove infections) and 32 days in hospital, Connie’s mom was released. Rather then send her to a rehab facility, the family chose to bring her home. They wanted to try to accelerate the healing process by getting her into her own environment. Connie’s mom came home to a hospital bed with a catheter and a pick line available for the family to administer medications. Mentally, she had experienced accelerated dementia and had no recollection of what she had been through. At home, the care was full-on; they monitored her medications, performed procedures, fed her, and managed catheter and commode use.
Recently Connie’s mom has become more mobile, even though she still lacks the independence that the surgery promised. Now the family needs to watch so that Mom does not fall and they need to help her manage the extreme back pain that is a result of the surgery. Throughout the entire process, Connie has not only had to manage her stress, but also her mother's stress due to not being able to understand what has happened and why she is in so much pain.
Connie agreed to be interviewed for this article because her heart goes out to anyone who is in a caregiver role. She thinks about her responsibility constantly and is obsessed with the safety and health of her mother.
Lessons learned
Organizing assistance--Connie is the main family caregiver, but she also has the help of 5 family members. All 5 caregivers work so no one is available for their mother/grandmother 24X7. They stay organized with a schedule that a single person is in charge of putting together. This helps ensure that coverage is complete and caregivers’ time is maximized without excessive overlap between family members. Another person is in charge of medications in order to eliminate errors. Medication management has been one of their lessons learned. They have a list of all of Connie’s mom’s medications available and ready at all times. They have received mixed recommendations from doctors. Connie indicates that while they want to rely on the doctors, it has been the pharmacists who have helped them identify prescriptions where Connie’s mom is allergic and thus prevented setbacks.
Uncovering information--While her mom’s doctors were all certified to go to hospital A, the back surgeon only practices in hospital B. So Connie and her family did not have the comfort factor of knowing that her mom’s personal physician, who had treated her for years, was monitoring her health and medicines. Instead Connie’s family took the strategy of getting to know all of the nurses and doctors at hospital B. They relied on them for news. Even after her mom came home, she was under the care of hospital B’s visiting nursing staff and doctors. It was months before they could return to her family physician’s care. Further, once home, Connie felt that the nursing evaluation should have been an educational process and it was not. The family made mistakes in their care because of lack of knowledge for caring for a bedridden patient. For example, tucking the sheet of the hospital bed under the mattress (as one would with their own bed) led to bed sores on her mom’s heels. On top of that her mom had swollen feet and ankles. Connie’s family made her mom put her feet up on a pillow to reduce the swelling and get the circulation moving. This was painful for a back patient. It was only later that they found out from the visiting nurse how bedsores feel (much like your heels are on fire) and how to treat them, and from the primary care doctor after she was released from the visiting nurses why her feet were swollen (5 vials of intravenous liquid each day). Connie was frustrated by the process of working through the symptoms to find the source of the issue, in that it meant more pain for her mother, when there could have been some feedback and education from the staff to assist them up front. She realized that staff do not want to give out misinformation and that they may feel awkward about limiting the help they can provide for legal reasons. Her recommendation would be to ask up front about symptoms you are concerned with and about your plan of action. Do not make assumptions and you will get the answers that you need. Finally, Connie advocates talking to doctors, nurses, and pharmacists about issues the patient is having. Through these conversations, she discovered she could get a prescription for a wheel chair.
Advocating for the patient--Connie feels that regardless of the age of the family member, who is in a health facility, the family needs to advocate for the patient. Family should ensure the patient is eating and educate the facility staff on what the patient needs if staff are unable to communicate directly with the patient. Connie lobbies that families should make a point to understand all procedures and medications and the purpose of each. Further, it is a good idea to bring in supplements and food that the patient enjoys (as long as the staff approves it) to allow the patient to build up both strength and morale. Connie thinks family should be vocal with their concerns and also express their appreciation to the staff for their efforts after the patient's stay is over.
Hiring caregivers--While it was stressful for Connie when her mother was in the hospital, it was also comforting to know that she was being looked after. The visiting nurses they hired post-release were very costly. While the doctor provided a prescription for a caregiver, Connie found that Medicare and her mother’s secondary insurance would not cover the cost, so it was up to the family to find an adult aid for their mother. They did this by word of mouth recommendations and intend to pass on references for the aid when they no longer need her. Connie recommends that the family make public the patient’s schedule so that the aid can be part of the caregiving team. Should the family want the caregiver to be tough with the patient, outline your instructions clearly. Connie’s mother needed to get up and walk so these instructions were outlined for the caregiver. Hot buttons, or triggers, were noted for calling family members and calling 911. Connie encourages you to be honest with your aid. She told her aid that she was reluctant to leave her mother with someone outside the family, but that she also did not want to lose her job, which helped the caregiver understand the level of detail and hands-on care that the family was expecting from her.
Juggling your own life--Connie indicates that setting expectations for yourself and your family is better than waiting for big surprises to surface. If you are working, be honest with yourself about the amount of effort that you need to spend as a caregiver. She recommends considering the option of family leave rather than attempting to juggle a full-time job and full-time care giving. The former allows the worker more protection in the long run with his or her employer. Connie feels that every employer will tell you to do what you have to do to aid your family, but what they really mean is for a very brief period of time, and then they expect you will be back to your work with full effort. Planning ahead can help to reduce the stress that is likely to develop as conditions continue.
Experiencing frustration--When Connie’s mom first went home, the nursing service tried to send the same staff every week, which meant there were only 1-2 staff seeing her mother. After the family caregivers were trained on giving injections, the nurses came only once per week. Connie was really pleased that the same staff consistently came to see her mother. It was less chaotic than the changes in shift at the hospital and the stress for her mother was reduced both by knowing the caregivers and by being at home. The negative of this experience is that the family asked questions about their mother’s future that the staff could not answer and this was frustrating for the family. They knew that their mother was fine mentally and emotionally prior to the surgery, and wanted her back in that condition. The caregivers did not know Connie’s mother and, therefore, could not offer advice and could only treat according to the hospital doctor’s orders. What was lacking was emotional support and a recognition from medical staff that something was wrong with Connie’s mom. Any family must be prepared to experience similar frustrations.
Individual preferences--While Connie thoroughly supports the idea of rehabilitation stays for recovering patients, it just happened that her mother required very little rehabilitation services. Her feeling is that there is no place like home to get back on your feet. If her mother had been better able to communicate her needs with rehab staff, then rehab might have been a more viable alternative for her family. Connie’s idea was to make life as normal as possible for her mother knowing her limitations. She also thinks it is necessary to focus on the positives for the patient and let them see what is going right.
However, the surgery did not deliver the independence that they had planned. A couple of curve balls later and Connie is providing 24X7 care for her mother. She and 5 other family members have experienced different levels of care giving over the past months. They supported their mother (and grandmother) in the hospital by rotating visits to time with meals so that they could ensure their mother ate regularly. They also needed to advocate for their mom because she was very hard of hearing and very disoriented from multiple surgeries and infections. Her hearing condition affected not only her day-to-day interaction with staff. After surgery because she was unable to hear and would be disoriented from the procedure, the family was always concerned that their mom would give incorrect signals to the recovery room staff.
After 3 surgeries (2 to remove infections) and 32 days in hospital, Connie’s mom was released. Rather then send her to a rehab facility, the family chose to bring her home. They wanted to try to accelerate the healing process by getting her into her own environment. Connie’s mom came home to a hospital bed with a catheter and a pick line available for the family to administer medications. Mentally, she had experienced accelerated dementia and had no recollection of what she had been through. At home, the care was full-on; they monitored her medications, performed procedures, fed her, and managed catheter and commode use.
Recently Connie’s mom has become more mobile, even though she still lacks the independence that the surgery promised. Now the family needs to watch so that Mom does not fall and they need to help her manage the extreme back pain that is a result of the surgery. Throughout the entire process, Connie has not only had to manage her stress, but also her mother's stress due to not being able to understand what has happened and why she is in so much pain.
Connie agreed to be interviewed for this article because her heart goes out to anyone who is in a caregiver role. She thinks about her responsibility constantly and is obsessed with the safety and health of her mother.
Lessons learned
Organizing assistance--Connie is the main family caregiver, but she also has the help of 5 family members. All 5 caregivers work so no one is available for their mother/grandmother 24X7. They stay organized with a schedule that a single person is in charge of putting together. This helps ensure that coverage is complete and caregivers’ time is maximized without excessive overlap between family members. Another person is in charge of medications in order to eliminate errors. Medication management has been one of their lessons learned. They have a list of all of Connie’s mom’s medications available and ready at all times. They have received mixed recommendations from doctors. Connie indicates that while they want to rely on the doctors, it has been the pharmacists who have helped them identify prescriptions where Connie’s mom is allergic and thus prevented setbacks.
Uncovering information--While her mom’s doctors were all certified to go to hospital A, the back surgeon only practices in hospital B. So Connie and her family did not have the comfort factor of knowing that her mom’s personal physician, who had treated her for years, was monitoring her health and medicines. Instead Connie’s family took the strategy of getting to know all of the nurses and doctors at hospital B. They relied on them for news. Even after her mom came home, she was under the care of hospital B’s visiting nursing staff and doctors. It was months before they could return to her family physician’s care. Further, once home, Connie felt that the nursing evaluation should have been an educational process and it was not. The family made mistakes in their care because of lack of knowledge for caring for a bedridden patient. For example, tucking the sheet of the hospital bed under the mattress (as one would with their own bed) led to bed sores on her mom’s heels. On top of that her mom had swollen feet and ankles. Connie’s family made her mom put her feet up on a pillow to reduce the swelling and get the circulation moving. This was painful for a back patient. It was only later that they found out from the visiting nurse how bedsores feel (much like your heels are on fire) and how to treat them, and from the primary care doctor after she was released from the visiting nurses why her feet were swollen (5 vials of intravenous liquid each day). Connie was frustrated by the process of working through the symptoms to find the source of the issue, in that it meant more pain for her mother, when there could have been some feedback and education from the staff to assist them up front. She realized that staff do not want to give out misinformation and that they may feel awkward about limiting the help they can provide for legal reasons. Her recommendation would be to ask up front about symptoms you are concerned with and about your plan of action. Do not make assumptions and you will get the answers that you need. Finally, Connie advocates talking to doctors, nurses, and pharmacists about issues the patient is having. Through these conversations, she discovered she could get a prescription for a wheel chair.
Advocating for the patient--Connie feels that regardless of the age of the family member, who is in a health facility, the family needs to advocate for the patient. Family should ensure the patient is eating and educate the facility staff on what the patient needs if staff are unable to communicate directly with the patient. Connie lobbies that families should make a point to understand all procedures and medications and the purpose of each. Further, it is a good idea to bring in supplements and food that the patient enjoys (as long as the staff approves it) to allow the patient to build up both strength and morale. Connie thinks family should be vocal with their concerns and also express their appreciation to the staff for their efforts after the patient's stay is over.
Hiring caregivers--While it was stressful for Connie when her mother was in the hospital, it was also comforting to know that she was being looked after. The visiting nurses they hired post-release were very costly. While the doctor provided a prescription for a caregiver, Connie found that Medicare and her mother’s secondary insurance would not cover the cost, so it was up to the family to find an adult aid for their mother. They did this by word of mouth recommendations and intend to pass on references for the aid when they no longer need her. Connie recommends that the family make public the patient’s schedule so that the aid can be part of the caregiving team. Should the family want the caregiver to be tough with the patient, outline your instructions clearly. Connie’s mother needed to get up and walk so these instructions were outlined for the caregiver. Hot buttons, or triggers, were noted for calling family members and calling 911. Connie encourages you to be honest with your aid. She told her aid that she was reluctant to leave her mother with someone outside the family, but that she also did not want to lose her job, which helped the caregiver understand the level of detail and hands-on care that the family was expecting from her.
Juggling your own life--Connie indicates that setting expectations for yourself and your family is better than waiting for big surprises to surface. If you are working, be honest with yourself about the amount of effort that you need to spend as a caregiver. She recommends considering the option of family leave rather than attempting to juggle a full-time job and full-time care giving. The former allows the worker more protection in the long run with his or her employer. Connie feels that every employer will tell you to do what you have to do to aid your family, but what they really mean is for a very brief period of time, and then they expect you will be back to your work with full effort. Planning ahead can help to reduce the stress that is likely to develop as conditions continue.
Experiencing frustration--When Connie’s mom first went home, the nursing service tried to send the same staff every week, which meant there were only 1-2 staff seeing her mother. After the family caregivers were trained on giving injections, the nurses came only once per week. Connie was really pleased that the same staff consistently came to see her mother. It was less chaotic than the changes in shift at the hospital and the stress for her mother was reduced both by knowing the caregivers and by being at home. The negative of this experience is that the family asked questions about their mother’s future that the staff could not answer and this was frustrating for the family. They knew that their mother was fine mentally and emotionally prior to the surgery, and wanted her back in that condition. The caregivers did not know Connie’s mother and, therefore, could not offer advice and could only treat according to the hospital doctor’s orders. What was lacking was emotional support and a recognition from medical staff that something was wrong with Connie’s mom. Any family must be prepared to experience similar frustrations.
Individual preferences--While Connie thoroughly supports the idea of rehabilitation stays for recovering patients, it just happened that her mother required very little rehabilitation services. Her feeling is that there is no place like home to get back on your feet. If her mother had been better able to communicate her needs with rehab staff, then rehab might have been a more viable alternative for her family. Connie’s idea was to make life as normal as possible for her mother knowing her limitations. She also thinks it is necessary to focus on the positives for the patient and let them see what is going right.
Sunday, August 29, 2010
Caregiving: Advocating for a child
Before we adopted our daughter, we had to attend a set of parenting classes. The class covering special needs children focused on being an advocate for your child. I thought, "Great! I have a big mouth and I like to argue if I think I am right. I finally found something in life that can benefit from these somewhat negative traits." Once we knew our daughter's condition, we contacted other parents with hearing disabled children, toured two local schools for the deaf, and lined up doctor appointments with specialists that these sources had recommended.
The adoption was finalized and the process to register our daughter with early intervention was smooth. She was accepted and put into a remarkable program called Sound Start at Lake Drive Program. Over the next year we switched audiologists and ear nose & throat specialists to find personalitites in professionals that met our expectations and values. Our daughter attended sessions at her school, and after she started talking more, had speech therapy at home. She progressed well and advanced mentally and physically beyond her biological age. There was little advocating needed.
Then came preparations for turning 3 years old. In New Jersey there is a clear delineation between our early intervention services and preschool services. Each child needs to be re-evaluated prior to turning 3 and meetings are held with the local school system to determine what, or if, any services will be provided. We were given a procedure manual, which was also explained by our early intervention case worker. We had heard stories from other parents about their experiences. The common thread was that it was not a simple, stress-free experience, and, most likely, it would entail a lot of advocating. At the same time, our daughter was starting the evaluations for transition, her doctor recommended a hearing device based on her recent reactions to sound. These two events have led me to really understand what it means to advocate for a child. We have had help from some remarkable people most of whom we have met during this process. All were very willing to support our daughter's cause. So here are our recommendations when advocating for your child:
To better understand the issues of educating a child with special needs, start with browsing the National Dissemination Center for Children with Disabilities. Their website offers information on disabilities, education of special needs child, state specific programs and offices, and much more.
The adoption was finalized and the process to register our daughter with early intervention was smooth. She was accepted and put into a remarkable program called Sound Start at Lake Drive Program. Over the next year we switched audiologists and ear nose & throat specialists to find personalitites in professionals that met our expectations and values. Our daughter attended sessions at her school, and after she started talking more, had speech therapy at home. She progressed well and advanced mentally and physically beyond her biological age. There was little advocating needed.
Then came preparations for turning 3 years old. In New Jersey there is a clear delineation between our early intervention services and preschool services. Each child needs to be re-evaluated prior to turning 3 and meetings are held with the local school system to determine what, or if, any services will be provided. We were given a procedure manual, which was also explained by our early intervention case worker. We had heard stories from other parents about their experiences. The common thread was that it was not a simple, stress-free experience, and, most likely, it would entail a lot of advocating. At the same time, our daughter was starting the evaluations for transition, her doctor recommended a hearing device based on her recent reactions to sound. These two events have led me to really understand what it means to advocate for a child. We have had help from some remarkable people most of whom we have met during this process. All were very willing to support our daughter's cause. So here are our recommendations when advocating for your child:
- Network with other parents in a similar situation. We have benefited from hearing other parents' stories, and have, hopefully, been able to share some value with parents following us in the process. It is sad, but at the same time re-assuring, to realize that other families are facing similar situations. For example, we learned that it is common for hearing test results to vary from visit to visit and it is common to change doctors if you feel uncomfortable with a practitioner and his or her recommendations.
- Call specialists and ask if they can support you in any way. Not only did our daughter's school help us, but the other school for the deaf in the area did as well. Even though we had no connection with the Summit Speech School, the executive director assisted us by suggesting a new type of hearing evaluation and, after a review of our daughter's case, provided suggestions on the type of services that were needed. Further, when we had issues obtaining my daughter's hearing device, I phoned clinics around the state asking them if they dealt with the device. Every time, even if the staff could not help me directly, they gave me suggestions and phone numbers of further places to call.
- Do your research. Our daughter's school pointed us to some scholarly research for children with hearing loss. By adding our own research we were better able to articulate the long term effects of our daughter's condition and identify methods for aiding her. Further, we now know the developmental areas where she is at risk, and can monitor those areas more closely.
- Persistence pays off. First, we were persistent with the local school system in separating a disabling condition from developmental delays. While there may not be a need for some special needs children to have special services if they are not developmentally delayed, a hearing loss is a situation where it is necessary to have special services if a child is going to succeed in an integrated classroom. Throughout the evaluation process, we learned more questions to ask and built up our case to a point where the school system agreed to classify our daughter for services. Second, we were persistent regarding complications in obtaining the hearing device. The rehab center we were sent to was unresponsive, could not schedule appointments less than a month in advance, and had an inappropriate number of audiologists (1 instead of 2, for a 3 year old patient) attend the appointment, which caused the process to be drawn out further. I phoned the ear nose and throat specialist and asked if we could go somewhere else. I was given the director's name for the program at the rehab center. When the director was no better than the other staff, I phoned the doctor again and asked to go elsewhere. He really listened. He phoned me at home after-hours and listened to all of my concerns. He then took over the case himself, opening an account with the manufacturer. His audiologist also kept the process moving for us when the manufacturer had issues delivering the hearing device on time.
- People care (even if their job requires that they say no to you). Every person throughout the process supplied us leads and assistance. It was remarkable. First, with regard to funding, the device is pretty costly, even more so than a normal hearing aid. The school system who was declining services gave us names to call; the early intervention people put together a request to the state for us; the doctor wrote to our insurance company; the manufacturer of the device offered advice. We talked to people in state government roles, and family members gave us ideas. In the end, we did not get financial aid, but I am truly overwhelmed by the number of people who offered advice and wrote letters on our behalf. Second, people helped us lobby for services. The rehab center that was having issues getting us the hearing device, offered to write a letter to the school system. Our daughter's school and the other school for the deaf wrote recommendations for us to submit. We are awed by the willingness to help others that was shown to us and hope that we can do the same for other families when they need it.
To better understand the issues of educating a child with special needs, start with browsing the National Dissemination Center for Children with Disabilities. Their website offers information on disabilities, education of special needs child, state specific programs and offices, and much more.
Sunday, August 22, 2010
Family Caregiving
More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.
4% of family caregivers care for a special needs child with an estimated 16.8 million caring for special needs children under 18 years old. 55% of these caregivers are caring for their own children.
73% of family caregivers who care for someone over the age of 18 either work or have worked while providing care; 66% have had to make some adjustments to their work life, from reporting late to work to giving up work entirely; and 1 in 5 family caregivers have had to take a leave of absence.
47% of working caregivers indicate an increase in caregiving expenses has caused them to use up ALL or MOST of their savings.
20% of employed female caregivers over 50 years old report symptoms of depression compared to 8% of their non-caregiving peers.
22% of family caregivers say they need help communicating with physicians.
(Caregiver statistics are quoted from NFCA)
The role of caregiver can be a short-term or long-term assignment. For some it can start as financial or chore assistance for an elderly relative and build to a more serious full-time proposition as that relative’s physical or mental health deteriorates. For others it is sudden and full-on 24X7 care in order to prevent an elderly relative from going to a rehabilitation facility or elderly care facility. Still others find themselves caring for special needs children. Relatives also manage the care as provided by a facility when the patient can no longer be serviced in the home.
Help is available, but sometimes, it is difficult to find the time to locate it. Plus the caregiver may not understand where to go for assistance. The National Family Caregivers Association (NFCA) and the National Alliance for Caregiving (NAC) are organizations that can help. They have worked together to create the site Family Caregiving 101. This website offers many topics, such as how to talk to the hospital and insurance companies. It provides links to financial resources and information about medical conditions. There is also a link to a training manual for caregivers.
The NFCA supports caregivers regardless of diagnosis or life stage in order to empower, educate and support caregivers. They also advocate for the population of caregivers and offer online discussions for caregivers.
The NAC also offers online resources and publications. This not-for-profit alliance has members from professional associations, service, grassroots and disease-specific organizations, corporations and government agencies. Their mission “is to be the objective national resource on family caregiving”.
For the next couple of posts, we will continue to focus on the issues of caregiving.
Wednesday, August 18, 2010
The Good Hedgehog: Adapted from a fable by Aesop
A fox was swept away by the force of the river whilst trying to cross; he was carried over a waterfall, and washed up on the rocks near a deep ravine. He lay, bruised, sick and unable to move. Soon a swarm of blood-sucking flies settled on him. A hedgehog, who was passing by, saw the motionless fox and, filled with compassion for the fox’s suffering, asked if he should disperse the cloud of flies that were tormenting the fox. ‘No, please don’t disturb them,’ said the fox. ‘I don’t understand,’ said the hedgehog. ‘Don’t you want to be rid of them?’ ‘No,’ said the fox. ‘These flies are full of blood and don’t bite much, but if you shoo them away, others, hungry ones, will surely come in their place, and they will drink all of the blood I have left.’
This insightful fable by Aesop, writing in Greece in the 6th Century B.C.E., predates the Christian Greek Scriptures (the New Testament) and the story of the Good Samaritan by hundreds of years, and is roughly contemporary with the works of the Buddha, writing in China. The story remains relevant and fresh today, especially for its novel viewpoint, and surprise ending. While it was originally part of a longer story (which I won’t explore further here) that has Aesop himself, an ersatz lawyer, defending a crooked politician, the story is also about different perceptions of rescue, and rescuing, and provides us eye-opening insight into both the viewpoint of one who is suffering, and of one who wishes to give aid, and who can’t imagine, in this scene, that more harm can come from ‘help’. The story allows us to see that all aid is not necessarily aid, no matter the intent. It is also a reminder that suffering, to a degree, can be preferable to something more hideous and unbearable, and that a potential rescuer needs to consider whether help is really required, and to what extent, so that matters aren’t made worse, and injuries exacerbated. It also demands of us an increased sensitivity to all others, and a new level of meaning for the term ‘judgment’.
This insightful fable by Aesop, writing in Greece in the 6th Century B.C.E., predates the Christian Greek Scriptures (the New Testament) and the story of the Good Samaritan by hundreds of years, and is roughly contemporary with the works of the Buddha, writing in China. The story remains relevant and fresh today, especially for its novel viewpoint, and surprise ending. While it was originally part of a longer story (which I won’t explore further here) that has Aesop himself, an ersatz lawyer, defending a crooked politician, the story is also about different perceptions of rescue, and rescuing, and provides us eye-opening insight into both the viewpoint of one who is suffering, and of one who wishes to give aid, and who can’t imagine, in this scene, that more harm can come from ‘help’. The story allows us to see that all aid is not necessarily aid, no matter the intent. It is also a reminder that suffering, to a degree, can be preferable to something more hideous and unbearable, and that a potential rescuer needs to consider whether help is really required, and to what extent, so that matters aren’t made worse, and injuries exacerbated. It also demands of us an increased sensitivity to all others, and a new level of meaning for the term ‘judgment’.
Saturday, August 14, 2010
Evaluating charitable organizations
While researching how one might evaluate a charity, I came across two helpful websites, both of which have been cited in national media as authorities in this area.
First, the American Institute of Philanthropy (AIP) website offers a wealth of information for understanding better how a charity operates. Ratings are provided for charities to allow individuals to determine whether or not they want to support a particular organization. AIP indicates that top rated organizations:
This not for profit organization also offers articles that offer insight into governance, accountability, solicitations and other topics. Here are some of their tips for giving wisely:
Charity Navigator also offers tips for choosing a charity to support:
I did like the fact that Charity Navigator offers a search box to quickly find information about a charity, where on the AIP site you will need to search the Top Rated and A-Z menus options to find information on individual organizations. Further, AIP releases many of its ratings in its print report only, which needs to be purchased.
As an interesting experiment, I compared the same charity at both websites. Here are the results:
Addendum 8/16--
First, the American Institute of Philanthropy (AIP) website offers a wealth of information for understanding better how a charity operates. Ratings are provided for charities to allow individuals to determine whether or not they want to support a particular organization. AIP indicates that top rated organizations:
generally spend 75% or more of their budgets on programs, spend $25 or less to raise $100 in public support, do not hold excessive assets in reserve, and receive "open-book" status for disclosure of basic financial information and documents to AIP.Details of their criteria are available on their site.
This not for profit organization also offers articles that offer insight into governance, accountability, solicitations and other topics. Here are some of their tips for giving wisely:
Similarly, Charity Navigator rates organizations. This website indicates that they are independent and a non-profit organization themselves. Their ratings tables seem more complicated. At first I thought they were less stringent than the AIP because their scoring allow for program expenses of up to 30% to receive points. However, they have detailed criteria per type of charity and include primary revenue growth, and program expense growth, which AIP does not. They also calculate working capital ratio just as AIP does, which measures the ability to operate into the future without any further income.
- Find out where your dollars go
- Remember: “Tax Exempt” does not always mean “tax deductible”
- Do not be misled by a charity’s familiar name
- Ask if the charity is registered by federal, state and/or local authorities
Charity Navigator also offers tips for choosing a charity to support:
Charity Navigator offers studies, such as the metro market study of charitable causes, a CEO compensation study, and a special events study. I would characterize their offerings as industry analytics and their role as providing an overview of industry trends, where I would characterize AIP’s offerings as “whistle-blower” activity in focusing on news alerting readers about poor practices by individual organizations and across the industry.
- Review executive compensation
- Check the charity’s commitment to donor’s rights
- Concentrate your giving
I did like the fact that Charity Navigator offers a search box to quickly find information about a charity, where on the AIP site you will need to search the Top Rated and A-Z menus options to find information on individual organizations. Further, AIP releases many of its ratings in its print report only, which needs to be purchased.
As an interesting experiment, I compared the same charity at both websites. Here are the results:
- Reading Is Fundamental (RIF) received a grade A from AIP, and 2 stars from Charity Navigator. No details are provided on the AIP website other than the grade. Charity Navigator provided all of the details for the current and historical ratings for free.
- National Trust for Historic Preservation was rated 2 stars on Charity Navigator and B+ on AIP.
Addendum 8/16--
As a courtesy, I notified both organizations about our article. I am adding a quote from AIP here as it will help to further delineate each of these organizations' work:
What sets AIP apart from other sources of charity information is our thorough and rigorous analysis of every group that we rate. Other rating organizations do not use the same standards when evaluating charities. . . At AIP, our analysts perform a thorough and in-depth evaluation of a charity’s IRS form 990, including schedules and attachments, audited financial statements, and annual reports in order to determine how a given charity is actually raising and spending your donated dollars. Our function is not to please the charities, but rather to provide the donating public with the information they need to make better informed giving decisions. . . Our criteria is generally thought to be the strictest in the sector.
Sunday, August 8, 2010
Linking personal improvement goals with giving to others
Three years ago, Ralph changed his life and created an opportunity to serve others at the same time. His story offers practical advice in both building a fitness plan and insight into several charitable organizations.
Ralph’s fitness story:
In the summer of 2007, his doctor came down hard on him. He had high blood pressure, poor cholesterol numbers, ballooning weight, and chronic asthma. He was also pre-diabetic. Ralph started working to improve his daily diet. During this time, he was greatly influenced when he went to support friends and family at a sprint triathlon and then a marathon. Ralph remembers:
The holidays came and went and Ralph’s friend reminded him in January about the spring run. Ralph took action. He went outside on Jan 10th and ran 3/10th of a mile. He ended the session with stretches and logged his weight on a chart (204 lbs). By Jan 30th, he ran a mile for the first time, and three days later 1.5 miles. He found a free training program online and kept moving. While continuing to build distance and lose weight, he decided he would try to run the spring 10K run. His friend, Manny, was running the St. Patty’s 5K race in Morristown, NJ, so he signed up as part of his training. While he did not have an official timing chip, he finished around 31 minutes and 30 seconds. His weight was down to 190 lbs and the idea of running the 10K race seemed feasible. On April 5, 2008, running the race became a reality as he ran the whole distance of the 10K in Richmond in 1 hour 6 minutes and 9 seconds. In 3 months he went from inactive to completing both a 5K and 10K race and his weight was at 186. Wanting to keep motivated, but feeling a bit burned out with running, Ralph decided to participate with his brother in a sprint triathlon at the end of the summer. This type of training was different from the way he had been training. Ralph comments:
During the race, Ralph’s brother helped pace him and together they finished in 1 hour and 51 minutes.
Since his start in 2008, Ralph’s goal has been to improve or at least maintain his health and basic fitness In January, 2009, he signed up for a weight loss and fitness program, which offered nutritional and fitness counseling. He has used what he learned in that program to continue improvements and has managed to bring his weight down to 156 pounds. Ralph's doctor has congratulated him on the marked improvements in his test results due to the weight loss and improved fitness.
Ralph’s fund raising story:
Feeling great after his initial races in 2008, Ralph decided in 2009 that he wanted to give something back. He recalled seeing people running the Ukrop’s 10K in special shirts to fight cancer and he had seen cancer impact friends and family. For the Ukrop race, he signed up for the Massey Challenge to “Put Cancer on the Run” as a fundraiser for the Virginia Commonwealth University Massey Cancer Center. He dedicated his fund raising to his late Aunt Grace, who died from cancer, and his former co-worker, Pat, who is a cancer survivor.
This led to another type of fund raising event for cancer. He became a shavee for St. Baldric’s, which is dedicated to the fight against childhood cancer. Shavees have the hair shaved off their heads to identify with the children whose hair has fallen out during radiation treatments. This fund raising endeavor was dedicated to Harry, a 9 year-old-boy still fighting cancer, whose Mom Eunice is a close friend of Ralph’s sister, Nancy. His other dedicatee was Mike, Ralph’s cousin’s husband, who is a childhood cancer survivor.
These combined events led to Ralph raising over $3K for cancer research. He continued working on his personal fitness goal, and engaged with family and friends in the process.
That same year, Ralph joined with a workmate, Rob, and Rob’s extended family to run the Jersey Shore Relay Marathon called RunAPalooza. This run, through several beach towns, raised funds for Special Olympics. The New Jersey chapter of Special Olympics served 18K athletes in 2009.
While continuing with the Ukrop and RunAPalooza runs in 2010, Ralph also added another cause, the Superhero Half Marathon and Relay in Morris Township, NJ, which donated the profits from the race to the Christopher and Dana Reeve Foundation. This organization is aimed toward research in spinal paralysis. It also works to educate the public and enhance the quality of life for victims of spinal paralysis.
Further, on August 15th this year, Ralph will be running in the Falmouth Road Race with his cousin, Chris. Runners for this very popular 7 mile race on Cape Cod are chosen from a lottery of thousands of entrants. Chris is running to raise money for Fairwinds. The mission of Fairwinds is to provide opportunities for friendship, support, employment, and education to people with psychiatric disabilities who live on upper Cape Cod. They also assist individuals as they recover from mental illness and co-occurring disorders, to achieve a higher quality of life. In addition, Fairwinds fosters, promotes, and advances awareness and support in the public and private sectors for mental health facilities. To sponsor Chris in this race, e-mail him.
More about Ralph’s races:The Ukrop’s Monument Avenue 10K: According to the Richmond Times-Dispatch, this race has been named one of the top 10 races in the country by USA Today, and is one of the largest participant races in the country with over 37K registered this year. The race is started by Olympic caliber athletes, who are followed in waves by runners, joggers, walkers, and people in costumes. The sidewalks are lined with bands playing music, spirit squads, and local residents cheering everyone on.
The Labor Day weekend sprint triathlon: consists of a swim of 600 yards, a bike ride of 13 miles, and a run of 3 miles. It is part of a fun weekend that includes similar events for children over shorter distances, and wraps up with a barbecue.
The New York Century Bike Tour is organized by Transportation Alternatives as an awareness and fundraiser for bike riding in New York City. The entire route winds around 4 of the 5 boroughs of New York City and it offers different distances depending on the pace you want to ride, so you can choose to go 15 miles, 35 miles, 55 miles, 75 miles, and of course 100 miles.
Ralph, with his doctor's approval, usually follows a free training program by Hal Higdon, which gives him a sense of progress to build up toward an event. The key events he focuses on are the 10K in Richmond and the sprint triathlon, training for the 10K in the winter, and the triathlon in the summer. He has added other smaller events, such as the Resolution Run & Walk 5K, in Hillsborough, NJ, which is a great way to keep him running through the holidays and to kick off the new year in January. He tries to improve his time for a particular race or distance and also tries new events as challenges. For example, last year that included the 55 mile route for the New York Century Bike Tour and this year his first half marathon (13.1 miles). He is currently training for a full 100 mile NY Century in September.
Ralph’s fitness story:
In the summer of 2007, his doctor came down hard on him. He had high blood pressure, poor cholesterol numbers, ballooning weight, and chronic asthma. He was also pre-diabetic. Ralph started working to improve his daily diet. During this time, he was greatly influenced when he went to support friends and family at a sprint triathlon and then a marathon. Ralph remembers:
First my brother, Peter, invited me to cheer him on in the sprint triathlon and then in November I went to Richmond, Virginia. My friends, Manny and John, were running their first marathons along with John’s brother, Jeff. I was inspired by seeing my friends run the complete 26 mile race, in particular, the sight of people of all shapes and sizes out on the course made me think maybe I could do this. Before the marathon weekend was over I had agreed to return to Richmond in the spring for the Ukrop’s 10K with the initial plan of walking it with John’s wife, Nidia.
The holidays came and went and Ralph’s friend reminded him in January about the spring run. Ralph took action. He went outside on Jan 10th and ran 3/10th of a mile. He ended the session with stretches and logged his weight on a chart (204 lbs). By Jan 30th, he ran a mile for the first time, and three days later 1.5 miles. He found a free training program online and kept moving. While continuing to build distance and lose weight, he decided he would try to run the spring 10K run. His friend, Manny, was running the St. Patty’s 5K race in Morristown, NJ, so he signed up as part of his training. While he did not have an official timing chip, he finished around 31 minutes and 30 seconds. His weight was down to 190 lbs and the idea of running the 10K race seemed feasible. On April 5, 2008, running the race became a reality as he ran the whole distance of the 10K in Richmond in 1 hour 6 minutes and 9 seconds. In 3 months he went from inactive to completing both a 5K and 10K race and his weight was at 186. Wanting to keep motivated, but feeling a bit burned out with running, Ralph decided to participate with his brother in a sprint triathlon at the end of the summer. This type of training was different from the way he had been training. Ralph comments:
Swimming as exercise, when you have not done it previously is really quite difficult; it can induce feelings of panic and suffocation as you try to get comfortable in the water. It turned out it was a good thing that it was so far off, as biking and swimming require quite different muscles, and I would need that time during the summer to get ready.
During the race, Ralph’s brother helped pace him and together they finished in 1 hour and 51 minutes.
Since his start in 2008, Ralph’s goal has been to improve or at least maintain his health and basic fitness In January, 2009, he signed up for a weight loss and fitness program, which offered nutritional and fitness counseling. He has used what he learned in that program to continue improvements and has managed to bring his weight down to 156 pounds. Ralph's doctor has congratulated him on the marked improvements in his test results due to the weight loss and improved fitness.
Ralph’s fund raising story:
Feeling great after his initial races in 2008, Ralph decided in 2009 that he wanted to give something back. He recalled seeing people running the Ukrop’s 10K in special shirts to fight cancer and he had seen cancer impact friends and family. For the Ukrop race, he signed up for the Massey Challenge to “Put Cancer on the Run” as a fundraiser for the Virginia Commonwealth University Massey Cancer Center. He dedicated his fund raising to his late Aunt Grace, who died from cancer, and his former co-worker, Pat, who is a cancer survivor.
This led to another type of fund raising event for cancer. He became a shavee for St. Baldric’s, which is dedicated to the fight against childhood cancer. Shavees have the hair shaved off their heads to identify with the children whose hair has fallen out during radiation treatments. This fund raising endeavor was dedicated to Harry, a 9 year-old-boy still fighting cancer, whose Mom Eunice is a close friend of Ralph’s sister, Nancy. His other dedicatee was Mike, Ralph’s cousin’s husband, who is a childhood cancer survivor.
These combined events led to Ralph raising over $3K for cancer research. He continued working on his personal fitness goal, and engaged with family and friends in the process.
That same year, Ralph joined with a workmate, Rob, and Rob’s extended family to run the Jersey Shore Relay Marathon called RunAPalooza. This run, through several beach towns, raised funds for Special Olympics. The New Jersey chapter of Special Olympics served 18K athletes in 2009.
While continuing with the Ukrop and RunAPalooza runs in 2010, Ralph also added another cause, the Superhero Half Marathon and Relay in Morris Township, NJ, which donated the profits from the race to the Christopher and Dana Reeve Foundation. This organization is aimed toward research in spinal paralysis. It also works to educate the public and enhance the quality of life for victims of spinal paralysis.
Further, on August 15th this year, Ralph will be running in the Falmouth Road Race with his cousin, Chris. Runners for this very popular 7 mile race on Cape Cod are chosen from a lottery of thousands of entrants. Chris is running to raise money for Fairwinds. The mission of Fairwinds is to provide opportunities for friendship, support, employment, and education to people with psychiatric disabilities who live on upper Cape Cod. They also assist individuals as they recover from mental illness and co-occurring disorders, to achieve a higher quality of life. In addition, Fairwinds fosters, promotes, and advances awareness and support in the public and private sectors for mental health facilities. To sponsor Chris in this race, e-mail him.
More about Ralph’s races:The Ukrop’s Monument Avenue 10K: According to the Richmond Times-Dispatch, this race has been named one of the top 10 races in the country by USA Today, and is one of the largest participant races in the country with over 37K registered this year. The race is started by Olympic caliber athletes, who are followed in waves by runners, joggers, walkers, and people in costumes. The sidewalks are lined with bands playing music, spirit squads, and local residents cheering everyone on.
The Labor Day weekend sprint triathlon: consists of a swim of 600 yards, a bike ride of 13 miles, and a run of 3 miles. It is part of a fun weekend that includes similar events for children over shorter distances, and wraps up with a barbecue.
The New York Century Bike Tour is organized by Transportation Alternatives as an awareness and fundraiser for bike riding in New York City. The entire route winds around 4 of the 5 boroughs of New York City and it offers different distances depending on the pace you want to ride, so you can choose to go 15 miles, 35 miles, 55 miles, 75 miles, and of course 100 miles.
Ralph, with his doctor's approval, usually follows a free training program by Hal Higdon, which gives him a sense of progress to build up toward an event. The key events he focuses on are the 10K in Richmond and the sprint triathlon, training for the 10K in the winter, and the triathlon in the summer. He has added other smaller events, such as the Resolution Run & Walk 5K, in Hillsborough, NJ, which is a great way to keep him running through the holidays and to kick off the new year in January. He tries to improve his time for a particular race or distance and also tries new events as challenges. For example, last year that included the 55 mile route for the New York Century Bike Tour and this year his first half marathon (13.1 miles). He is currently training for a full 100 mile NY Century in September.
Tuesday, August 3, 2010
Did you hear the one about the priest, the Levite, and the Samaritan?
I know a good story when I hear one, and though I’m no theologian, it’s easy to recognize and understand the presence of God between the lines of even the simplest Bible stories. Of course, there are no simple Bible stories, except on the surfaces. And how about a story of profound truth in answer to a question? Here is one.
This simple question, asked of Jesus by a scholar of the law, was meant to have an easy answer. But it runs much deeper than that. Jesus had just finished an exchange with the lawyer, who answered Jesus that one should “Love the Lord your God with all your heart, all your soul, all your strength, and all your mind.” Also, “Love your neighbor as you love yourself.” (NCV) After Jesus’ affirmation, the scholar’s question was “And who is my neighbor?” A good question. The questioner, this scholar, was probably thinking that the answer would be something about including those who live near you, those you know well, those who share your ideas, geographical location, and demographic. But the answer was much different. The answer was unexpected. In a modern context, imagine considering the most obnoxious, vile, coarse, unclean (or whatever) person you can think of and…realizing that he or she is your ‘neighbor‘. And not just your neighbor. This is the one you should help. It’s the person you should bring home to meet the family and have dinner with. This is the one you should love as much as you love yourself. Huh? That wasn’t the answer that was expected then, and probably not the one expected today. Jews and Samaritans didn’t like each other…no, that’s not quite right. According to reports, they hated each other. They each thought of the other group as unclean and unholy and…wrong. So, how could this be?
As with the unexpected answers, there are some humdinger questions in the Bible, (One that comes to mind is Pontius Pilate’s question: What is truth? But that is for another essay.) and this one is no different, or less complex. Of course, implicit in the law scholar’s question is not just ‘who’, but to what extent is a person one’s neighbor. Jesus, being the outrageous teacher that he was, picked the most extreme answers to a lot of questions put to him, even to those of his closest followers, and this one is no different and no less true for being extreme. There are no limits to how much you should love your neighbor--every single person, that is.
The story of the good Samaritan, in particular, as a parable, hammers home the humbling truth that we are no better than any one person or group, and not only should one love a ‘despised’ person, and help him or her in whatever way one can, but, conversely, that the person that you most despise, may well be the one to help you when you need it most.
This is a universal parable (for instance, some of the basic tenets of Buddhism focus on putting others first, passive resistance to evil, suffering, compassion, etc. as do many other world religious systems), and, if read on a deeper level, causes us to examine ourselves and our own shortfalls as part of the human family. Do we all have biases and prejudices? Of course we do. Should those biases cloud our willingness to help someone in need? Well, if after reading Luke’s account (Lk. 10:29-37) of the parable of the good Samaritan you can even think of doing so, you either haven’t understood the parable, or you have much thicker skin than I do. Even if you think you know the story well, read it again, or even two or three times--it’s not a long passage. You might get something different from it each time. I know I did.
This simple question, asked of Jesus by a scholar of the law, was meant to have an easy answer. But it runs much deeper than that. Jesus had just finished an exchange with the lawyer, who answered Jesus that one should “Love the Lord your God with all your heart, all your soul, all your strength, and all your mind.” Also, “Love your neighbor as you love yourself.” (NCV) After Jesus’ affirmation, the scholar’s question was “And who is my neighbor?” A good question. The questioner, this scholar, was probably thinking that the answer would be something about including those who live near you, those you know well, those who share your ideas, geographical location, and demographic. But the answer was much different. The answer was unexpected. In a modern context, imagine considering the most obnoxious, vile, coarse, unclean (or whatever) person you can think of and…realizing that he or she is your ‘neighbor‘. And not just your neighbor. This is the one you should help. It’s the person you should bring home to meet the family and have dinner with. This is the one you should love as much as you love yourself. Huh? That wasn’t the answer that was expected then, and probably not the one expected today. Jews and Samaritans didn’t like each other…no, that’s not quite right. According to reports, they hated each other. They each thought of the other group as unclean and unholy and…wrong. So, how could this be?
As with the unexpected answers, there are some humdinger questions in the Bible, (One that comes to mind is Pontius Pilate’s question: What is truth? But that is for another essay.) and this one is no different, or less complex. Of course, implicit in the law scholar’s question is not just ‘who’, but to what extent is a person one’s neighbor. Jesus, being the outrageous teacher that he was, picked the most extreme answers to a lot of questions put to him, even to those of his closest followers, and this one is no different and no less true for being extreme. There are no limits to how much you should love your neighbor--every single person, that is.
The story of the good Samaritan, in particular, as a parable, hammers home the humbling truth that we are no better than any one person or group, and not only should one love a ‘despised’ person, and help him or her in whatever way one can, but, conversely, that the person that you most despise, may well be the one to help you when you need it most.
This is a universal parable (for instance, some of the basic tenets of Buddhism focus on putting others first, passive resistance to evil, suffering, compassion, etc. as do many other world religious systems), and, if read on a deeper level, causes us to examine ourselves and our own shortfalls as part of the human family. Do we all have biases and prejudices? Of course we do. Should those biases cloud our willingness to help someone in need? Well, if after reading Luke’s account (Lk. 10:29-37) of the parable of the good Samaritan you can even think of doing so, you either haven’t understood the parable, or you have much thicker skin than I do. Even if you think you know the story well, read it again, or even two or three times--it’s not a long passage. You might get something different from it each time. I know I did.
Sunday, July 25, 2010
Volunteer work that supports a family member
Mary first became involved with the Juvenile Diabetes Research Foundation International 7 years ago when her then 8 year old nephew was diagnosed with type 1 diabetes. Since then, her husband, son and herself have participated in Walk for a Cure to raise money to support JDRF work. Until 2009, the walk was held locally and, while the events were local, Mary continued to take on more responsibility by working the silent auction during the walk ensuring that the tables were set up and merchandised, accepting item bids and collecting money after the event. She also worked a second silent auction event held at a local church. Mary’s family also supported fundraisers at local restaurants each year where a portion of the sales went toward JDRF. While her goal has not been to take on a leadership role, she has been happy being a “worker bee” for this cause.
Before becoming involved Mary researched the organization in order to see that it was reputable. She liked the fact that JDRF focuses on type 1 diabetes alone rather than supporting type 2 diabetes. The positive outcomes of her participation have been meeting new people and the good feeling of giving back to society.
When asked if she has agreed with the morals of the organization, Mary responded that she did not feel that one needs to have the same morals. While she is not as emotionally involved as much as a parent would be with finding a cure for type 1 diabetes, she feels that one should just find out if the organization is doing good work. If one does not agree with everything it is OK. Just as with friends, you may not agree with everything they do, but you still keep them as a friend. This organization has helped a lot of people and that is good enough for her to continue supporting them with her efforts.
Mary’s nephew has benefited from her participation as well. At the charity walks, vendors for diabetic supply companies are set up to tell people about their products and give away stuff to help the type 1 person in your life. Therefore, she has received a glucose monitor for when her nephew is at her house and also supplies to keep with her (glucose tablets) just in case her nephew goes high or low while he is with her.
A review of the JDRF website provides interesting reading.
If you are interested in learning more or becoming involved in this cause, visit the JDRF website. The website contains information on living with diabetes type 1, advocacy actions that you could take to work toward a cure for this disease, and information on current research related to this condition. You can also search for a local chapter to become involved personally with this organization. All donations to chapters and branches are tax deductible.
Before becoming involved Mary researched the organization in order to see that it was reputable. She liked the fact that JDRF focuses on type 1 diabetes alone rather than supporting type 2 diabetes. The positive outcomes of her participation have been meeting new people and the good feeling of giving back to society.
When asked if she has agreed with the morals of the organization, Mary responded that she did not feel that one needs to have the same morals. While she is not as emotionally involved as much as a parent would be with finding a cure for type 1 diabetes, she feels that one should just find out if the organization is doing good work. If one does not agree with everything it is OK. Just as with friends, you may not agree with everything they do, but you still keep them as a friend. This organization has helped a lot of people and that is good enough for her to continue supporting them with her efforts.
Mary’s nephew has benefited from her participation as well. At the charity walks, vendors for diabetic supply companies are set up to tell people about their products and give away stuff to help the type 1 person in your life. Therefore, she has received a glucose monitor for when her nephew is at her house and also supplies to keep with her (glucose tablets) just in case her nephew goes high or low while he is with her.
A review of the JDRF website provides interesting reading.
- The causes of type 1 diabetes is not known, however, scientists believe that it is a malfunction of the pancreas whereby the immune system attacks and destroys insulin-producing cells.
- Common myths about type 1 diabetes include that it is caused by excessive sugar intake or obesity.
- Genes account for less than half of the risk for this disease so other factors influence the development of type 1 diabetes.
- Research is one of the major goals of JDRF.
First, we judge the “patient benefit,” the quality of improvement that research would deliver, and the percentage of people with type 1 diabetes who would benefit. Then we look at the “time to benefit,” or how long it will take to deliver a drug or treatment. Next is the “scientific impact,” or the potential of the researchto advance science. Finally, we consider the “funding gap,” so that we are only funding science that otherwise wouldn’t be able to move forward.JDRF has chosen a strategy of cure, treat, and prevent. This allows them to focus dollars on research at every stage of the disease. They also fund a mix of short term and long term projects.
If you are interested in learning more or becoming involved in this cause, visit the JDRF website. The website contains information on living with diabetes type 1, advocacy actions that you could take to work toward a cure for this disease, and information on current research related to this condition. You can also search for a local chapter to become involved personally with this organization. All donations to chapters and branches are tax deductible.
Tuesday, July 20, 2010
Cup of cold water society
A relative by marriage (whom I see too infrequently) and I were talking. It was one of the few times we ever chatted, and, indeed, one of the first times that I had ever talked to S. in-depth before. When I say ‘in-depth’, I’m referring to the philosophical, the moral, the spiritual as opposed to, say, the weather. Anyway, he was telling a great story about his Medieval fighting practices and the strange and humorous ways they have affected him, his life, and his marriage. As a result of this lively account of his Templar costume and resulting wounds, we landed squarely in the realm of chivalry as it related (and relates) to the Templars, and in modern days, to those strange, moony, dreamy people (of which I am one) who yearn for the days when a handshake meant something, when honor played out as a matter of course, and deals were fair and square.
S. told me about his idea: wouldn’t it be great to just go around helping people? It was a great idea. He elaborated. Just help people who need help. Don’t explain anything, or ask for anything in return. Don’t expect a thank you. Just do it. After some thought, S. told me that he had performed some of these random acts of kindness, and had loosely banded several people together to help him accomplish his brand of giving, but distance, time and money had derailed the project somewhat. He told me that he came to the conclusion that the ‘group’ should ‘select’ the person requiring help, rather than just ‘doing it’, as he was concerned that a line would form with people with hands extended, saying ‘where’s mine?’. This should be avoided, if possible, S. told me, and I agreed. But how, without knowing the extent of the person’s ‘need’ would one accomplish this ‘judging’ of need?
It was a great idea. I told him that I would like to be involved in some way, but as I lived 500 miles away from S., and didn’t want to ‘help’ by providing only financial assistance (which I cannot provide much of, anyway) wondered how this was all going to work out. We left it at that, more or less. That was in early July of 2010.
On the 14th of July, what would have been my grandfather’s 100th birthday, I read in the ’Forward Day by Day’ devotional booklet from our church, a passage that outlined the Cup of Cold Water Society. It was uncanny the way it mirrored S.’s plans for a society of helpers. The rules of the society, which began after a church member offered to tend the grave of an elderly lady’s husband and who couldn’t attend the grave herself (due to some very odd circumstances), are simple. I quote from the passage in the Forward Day by Day: “There are no dues, no officers, no meetings---a thoroughly satisfactory organization. The rules are that when you know someone is in need, maybe for something so simple as a cup of cold water, you help and then tell no one you did it.” I think this states succinctly what S. was trying to tell me, and irons out some of the problems he was struggling with. Don’t worry about how you can give to everyone, and don’t worry about giving to those who don’t ‘deserve’ it. One should just help where one can, and give as one can. The devotional goes on to say that God will know. Amen.
S. told me about his idea: wouldn’t it be great to just go around helping people? It was a great idea. He elaborated. Just help people who need help. Don’t explain anything, or ask for anything in return. Don’t expect a thank you. Just do it. After some thought, S. told me that he had performed some of these random acts of kindness, and had loosely banded several people together to help him accomplish his brand of giving, but distance, time and money had derailed the project somewhat. He told me that he came to the conclusion that the ‘group’ should ‘select’ the person requiring help, rather than just ‘doing it’, as he was concerned that a line would form with people with hands extended, saying ‘where’s mine?’. This should be avoided, if possible, S. told me, and I agreed. But how, without knowing the extent of the person’s ‘need’ would one accomplish this ‘judging’ of need?
It was a great idea. I told him that I would like to be involved in some way, but as I lived 500 miles away from S., and didn’t want to ‘help’ by providing only financial assistance (which I cannot provide much of, anyway) wondered how this was all going to work out. We left it at that, more or less. That was in early July of 2010.
On the 14th of July, what would have been my grandfather’s 100th birthday, I read in the ’Forward Day by Day’ devotional booklet from our church, a passage that outlined the Cup of Cold Water Society. It was uncanny the way it mirrored S.’s plans for a society of helpers. The rules of the society, which began after a church member offered to tend the grave of an elderly lady’s husband and who couldn’t attend the grave herself (due to some very odd circumstances), are simple. I quote from the passage in the Forward Day by Day: “There are no dues, no officers, no meetings---a thoroughly satisfactory organization. The rules are that when you know someone is in need, maybe for something so simple as a cup of cold water, you help and then tell no one you did it.” I think this states succinctly what S. was trying to tell me, and irons out some of the problems he was struggling with. Don’t worry about how you can give to everyone, and don’t worry about giving to those who don’t ‘deserve’ it. One should just help where one can, and give as one can. The devotional goes on to say that God will know. Amen.
Sunday, July 18, 2010
Origins
Over the two past years, I have spent time researching several medical conditions, and identifying agencies that can aid a young child with a disabling condition. At the same time, my desire to aid others in my immediate community and those in foreign lands that are less fortunate than my family has grown, yet my personal circumstances (as indicated above) prevent me from dedicating much time in aiding others nor does it allow for large contributions to any particular cause.
The desire to increase aid evolved from several sources. First, we started attending a church with very active community members two years ago. During this time, I attended a program called Just Neighbors, which personalized the challenges of poverty and gave participants not only a chance to discuss issues, but also allowed us to experience balancing a budget when income never covers basic necessities, losing our job when we were not trained to do any other type of work and had no family support system, and experience the prejudice that comes with not being able to support your family. I wanted to get more involved, but my immediate family needed to take precedence, which means that my free time for volunteering comes only after my young child goes to bed at night and my financial responsibility to support my family takes precedence over donations. This does not make a good combination when it comes to charity work. However, a blog posting on hospitality toward others really hit home to me and made me realize that I could possibly make an impact by blogging myself about charitable organizations and ideas for serving others.
My goal is to start by identifying organizations or programs that allow us to be hospitable to those perceived to be 'less fortuate' financially, healthwise, mentally, or spiritually. I am not an expert in any of these areas, but I am a trained librarian (and thus have research skills) and have paired with a professional writer to aid in the crafting of interviews and documentation process. Together we aim to provide informative and throught provoking posts that we hope will lead to many people demonstrating hospitality toward others.
The desire to increase aid evolved from several sources. First, we started attending a church with very active community members two years ago. During this time, I attended a program called Just Neighbors, which personalized the challenges of poverty and gave participants not only a chance to discuss issues, but also allowed us to experience balancing a budget when income never covers basic necessities, losing our job when we were not trained to do any other type of work and had no family support system, and experience the prejudice that comes with not being able to support your family. I wanted to get more involved, but my immediate family needed to take precedence, which means that my free time for volunteering comes only after my young child goes to bed at night and my financial responsibility to support my family takes precedence over donations. This does not make a good combination when it comes to charity work. However, a blog posting on hospitality toward others really hit home to me and made me realize that I could possibly make an impact by blogging myself about charitable organizations and ideas for serving others.
My goal is to start by identifying organizations or programs that allow us to be hospitable to those perceived to be 'less fortuate' financially, healthwise, mentally, or spiritually. I am not an expert in any of these areas, but I am a trained librarian (and thus have research skills) and have paired with a professional writer to aid in the crafting of interviews and documentation process. Together we aim to provide informative and throught provoking posts that we hope will lead to many people demonstrating hospitality toward others.
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