ALS AND Share The Care™
An Interview with Kimi Morton Chun and
Advice from the patient Peggy Chun
Q and A
HOW WE MADE Share The Care™ WORK FOR OUR NEEDS
Kimi Chun, the force behind a very large group known as "Peg's Legs" talks about how they faced the everyday challenges of caring for Peggy Chun an amazing artist with ALS. This advice could also apply to the care of someone with another disease or condition that requires medical training for some of the caregivers.
Peg's Legs members worked in shifts. Could you tell us why you decided to make this adjustment to the model? How was it set up?
We knew we needed to cover the hours from 10 am to 10 pm since we had professional nurses for the overnight shift. We decided to split the hours into 3 four-hour shifts. We found that it was easiest for people to commit to 4 hours. Most people are busy, but finding 4 hours for volunteer caregiving is very doable.
Some of your members were trained by health professionals to work with Peggy's medical equipment like lifts as well as learn skills like suctioning. Did they volunteer to learn these skills or did you ask them?
In the beginning, we asked everyone who was interested in helping what their comfort level was. Some said they would do anything and others had very clear limitations, both physical and emotional. We saw that three main groups began to emerge. Our "A" caregivers, who were eager to help with anything and everything, would be trained by medical professionals to handle all the technical medical care, our "B" caregivers who would be there to assist the As but would not require training, and then our "C" caregivers who would be "floaters" - helping out here and there with household tasks and projects on their own time and not a part of the regular schedule.
Where did they get medical homecare training for the needed skills?
When Peggy went on the ventilator, the hospital would not let her go home until we had trained people to care for her. The company that provided Peggy with her ventilator did training for our volunteers as well as for the private nursing company we were using. We hired this private nursing agency to help us with overnight care. Having a professional organization to supplement Peggy's care was one of the best decisions we made and is vital to our organization. Their staff is on call for our caregivers in case they have questions regarding Peggy's medical care. They also coordinate doctor visits, medical supplies and medicine, and much more. They really help us to have a unified and organized care system. It is also very comforting to our volunteers to have professional nurses on the team. I don't think that this is always necessary or financially an option, but I highly recommend it in a situation like Peggy's who is ventilator dependent and has a very complicated care protocol.
What skills were they taught? How long was their training?
We trained our caregivers for a month when Peggy first went on the vent. Then we did ongoing training sessions anytime we needed to. Caregivers come and go, so each time we have someone new we train them for a couple weeks at the very minimum. In the beginning we had to train how to suction and manage the vent, lift Peggy using a Hoyer Lift, range of motion exercises, to name a few. As her ALS has progressed, people have had to learn new skills like managing her g-tube, learning to use a spell board for communication, and so on. Because of the degenerative nature of the illness, her care protocol is always changing, and therefore our caregivers must learn as we go.
Was Peggy comfortable with having her friends handle these crucial jobs?
Peggy has always been a "people person". She always welcomed people into her home and has always had a very "open" personality. This openness really is what made this system work so well for us. Peggy speaks about this a lot to others in need of care. She really stresses how important it is to be able to let people in to help you. This is not always easy when you are shy or perhaps if you were raised in a more conservation culture. But letting others in to help you is the single best thing you could do for yourself and for your loved ones. It means that the burden of care will not fall all on just one person. And you don't have to let in hundreds, as Peggy has done, but just enough to make sure that everyone involved in your care is getting the best quality life possible. And know that there are people that want to help you, they just need to know how.
The family decided on having professional care for Peggy at night. How were you able to afford this?
We worked with a case manager from Peggy's healthcare plan. Under her plan, she would receive some skilled nursing care in a home or hospital. We worked with the case manager to show the healthcare provider that we could save them money by caring for Peggy in her home combining professional nursing care with volunteers. They were able to convert the funds to pay our private nursing agency instead of a home. While we still end up paying some money out of pocket, this financial assistance has kept Peggy at home where she is happiest. This was very "out of the box" for them and we are so grateful. We hope that more healthcare insurance companies will follow suit and provide more coverage for home care arrangements.
A lot of medical equipment and technical equipment is a necessity for ALS patients. What was most valuable for Peggy and her caregivers?
We have probably used our Hoyer Lift the most. Peggy's wheelchair is also a vital piece of equipment for her quality of life. We have used many communication tools as well that were excellent.
Did you have to purchase this equipment? Is any covered by insurance? Or did you have to fundraise to pay for it?
Some of the basic assistive equipment such as the Hoyer Lift and her hospital bed were covered by insurance. For her electric wheelchair, we did a simple raffle fundraiser amongst her friends and family. People bought $20 raffle tickets for a chance to win one of Peggy's original paintings. Then we had a little party and drew the name from a bowl. It was a lot of fun and so easy. We were able to collect enough to pay for most of the wheelchair. MDA has also provided us with a lot of financial assistance over the years for technical equipment and servicing.
Speaking of fundraising, Peg's Legs has become quite expert in this area. Any advice, or ideas to pass along?
As I just mentioned, the raffle concept is an easy and quick way to raise funds. And you don't need to have a painting be the prize. Ask around and see if anyone can donate to your cause. Someone who works for an airline, for example, might be able to donate 2 round trip tickets as the prize. Concert tickets, gift cards, the prize could really be anything.
We've also had a large fundraising event. It was a lot of work, but really helped us tremendously. We got amazing support from our community. Keep in mind who the person is that you are raising funds for. Peggy is an artist, so we did an art fundraiser. Local artists donated work that we sold in a silent auction. It was an opportunity for the artist community to help another artist.
I recommend starting with a fundraising committee and then throwing some ideas around. All of our ideas have come from brainstorming sessions. Find an idea that feels good and go for it! As I said earlier, people want to help, they just don't know how.
From your experience what special challenges do caregivers of ALS patients face? How did your group cope?
ALS is an illness that slowly robs the person of their control over their world. They slowly become physically and psychologically totally dependent on those around them. This is obviously difficult for the person with ALS, but also for the caregivers. I think that caregivers need to have empathy for the person's loss of control and allow them to exert control where they can. However, it is vital that the caregivers have boundaries and maintain them without guilt. Caregivers often make the mistake of giving until their well is completely depleted. This does not serve the person they are caring for or themselves. Instead, caregivers need to care for themselves with as much passion as they care for others. You cannot care for others if you are an empty well. Remembering to fill your well with exercise, good nutrition, personal time, healthy relationships and whatever else gives you joy, will make you a better caregiver. And I can't stress enough to do this GUILT FREE! If you spend all your personal time worried and guilt ridden, then it truly defeats the purpose.
One last thing that has been vital for our sanity is HUMOR! This is probably the most important thing that you could incorporate into your life as a person with ALS or a caregiver. Watch funny movies, dress up in costume, have fun! Even when things get tough, we've always tried to find the humor in the situation. Sometimes it is all a matter of perspective and choice. As often as we can, we choose to laugh instead of cry.
Did family and/or group members attend support groups (MDA or ALS or other?) If so, would you recommend doing so? Or did you create your own STC support group gathering?
group definitely became its own support group. We try to have regular meetings to share information, but also to vent and decompress. I feel that this is a very healthy function of our meetings. It is so important to find a support group, whether it is your own STC
group or an MDA ALS support group. Caregivers need to share their experiences with each other and to lean on each other as well. We like to have parties for the caregivers at Peggy's home, but I also find that it is important to have meetings outside of the home, away from Peggy and the "work" environment where the caregivers can feel safe to discuss anything on their minds.
Peg's Legs has done an amazing job of keeping Peggy's artistic juices flowing and now even though she can only move her eyes, she continues to teach and paint with a class of schoolchildren. Why is this so critical to the patient?
As I mentioned before, ALS robs the person of their control. The most difficult piece of this is that the person has a more challenging time giving back to others and contributing to society. This is such a vital part of our self-esteem and emotional health. Peggy's artistic pursuits allow her to continue to contribute to society. She also is able to give back by sharing her knowledge and passion. This contributes so much to her quality of life.
Once you considered a special (round the clock) care home when Peggy's condition was quite advanced could you tell us about this and what you chose to do?
We realized that the cost to have her in the home would be almost as much as we are paying to keep her at home where she is happiest. Peggy was extremely resistant to the idea and so the savings wasn't worth the change. Additionally, Peggy is so accustomed to 24 hour private care that it would be a very big change to move her to a home where the care would be shared amongst all the patients. Peggy is used to a 1 to 1 sometimes 2 to 1 ratio it would be a major adjustment for her and she is understandably reluctant and believes her quality of life would suffer greatly. So we will continue to fundraise and do all that we can to keep her at home. If the money runs out, well, we'll cross that bridge if and when we get there.
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ADVICE FROM THE PATIENT
Peggy Chun a woman of great courage, creativity, humor and gratitude continues to inspire everyone she meets. Using her Erika Computer, she painstakingly wrote the following heartfelt advice to ALS patients and their families.
"Living with ALS"
Written by Peggy Chun for the MDA ALS Seminar in Honolulu, Hawaii
May 20, 2006
Aloha dear fellow ALS patients, treasured caregivers, medical staff, and loving family and friends,
First I would like to wish a special mahalo to MDA and to Queens. I've been a repeat customer often during the past four years and I am grateful for the compassionate care I've received throughout my battle with ALS. It's easy to criticize the medical profession and our hospitals, but I can personally say that I have no complaints...except the food!
Because of Dr. Dan Davis, I have the good fortune of weekly video conference doctor visits. With a caregiver here I am able to receive a full examination through a computer and video camera. Imagine the effort this saves patient and caregiver alike. We have been able to catch pressure sores, rashes, colds, and even pneumonia early and treat successfully. Thank you, Dr. Davis and Queens!
Another expression of gratitude goes to Cory lee, owner of Health Care Alternatives and her staff. From the beginning I have been given the finest nursing care possible. A nursing agency of this caliber is essential for a vented ALS patient.
This is my fourth year dealing with perhaps one of the most challenging diseases for both patient and caregiver. It is a disease also dreaded by the doctors who can only feel frustrated by the lack of effective treatment, the FDA and our medieval government policies regarding stem cell research. I believe this gathering can offer hope and needed information to all faced with this, and other, neurological diseases. What every one of us needs is hope and today I wish to bring you just that by sharing what I've learned during this journey living with ALS. Note I say living with, not dying from, ALS.
When the diagnosis of ALS comes, most patients and their families are struck with fear and confusion. Unless a family member or friend has been hit with ALS, most of us have no idea of what is happening. Having experienced ALS with three family members, it still came as a shock, but I knew what to do. I called MDA. Immediately, they put me in touch with their ALS clinic at Castle Hospital. The visit included genetic testing. Your gene that turns on ALS is extremely important for all the research going on now. Dr. Kimata is brilliant and compassionate.
I have had the tremendous good fortune of being blessed with a loving family and supportive friends. I also have my health insurance with HMSA and they have been a caring and supportive provider. As I look back, I'm so glad that I considered health insurance important! Even if you lack some of this support, MDA is able to provide a wide range of information and assistance.
The sooner you accept that you will need assistance, the better things will be for you and your family. This brings me to a problem I've witnessed often in my illness - family secrecy and shame. If you as caregivers, and you, the patient, want to live a healthier life during the time we have left, you must learn to let go control and learn to trust that others can take care of you - EVEN IF YOU ARE SURE YOU CAN DO A BETTER JOB! Secrecy only makes the ALS more difficult to accept. It excludes friends and even people out there that you haven't met but who want to help. It creates loneliness and depression, which in turn, I believe, hastens death. Please try to open up to all who want to help.
That being said, there is another unforeseen situation that will most likely unnerve you and your family. Some of your closest friends and even family members will not come by. You must understand and accept that they can't deal with their emotions surrounding their perceived loss of you. It could be that they have not had to face the death of someone close or that their loss is too painful to imagine. I ask that you accept them and continue to love them. They don't know what to do. You may receive help in indirect ways so know that it stems from their own pain and grief. I know. When my mother was dying of ALS, I couldn't bear to be with her. I couldn't face that she would not be with us. I had flown home not knowing the seriousness of her condition. There's that family secrecy I spoke of earlier. She died six days later. The agony and denial surrounding my twin sister's death from ALS kept me from making my last days with her as meaningful as they should have been. I understand denial. Accept it in your loved ones and try to recognize it in yourself.
Speaking of caregivers, they are the gems of humanity. How could we possibly survive without them? Caregivers are motivated by compassion. As an ALS patient I am grateful for the incredible care I've received during the past four years. Caregivers need TLC. I've sometimes been so blinded by my own problems that I've failed to recognize burnout in my caregivers. ALS is so intensive for those who take care of us. Think about it...they have to be our voluntary muscles! We are like newborns, totally dependent on man and machine to stay alive. Thank your caregivers!
In February 2003, we received a book from my brother Matt, titled Share The Care™ by Sheila Warnock and Cappy Capossela. My sister Camille, a realist, my dear friend Martha Torney, and my daughter-in-law Kimi, put together an initial meeting of friends. Over the years, this list of friends, which started with 20 or so, evolved to a list of around 100 people who would become "Peg's Legs". Suzanne Maurer, magically schedules three four hour shifts a day. Shifts include an A person, trained in trach care and other nursing skills required, and a B person who assists the A by turning, helping with Hoyer Lift, and if time permits, indulging me by wrapping millions of gifts, wearing costumes for any occasion, making puppets, helping me paint, and assisting with the computers. Very few of these caregivers are trained nurses! We train them, many of whom are brand new friends. Before the vent, a regular group took me to the beach every Friday for a workout and lunch. They arranged for a beach ATV wheel chair to which they transferred me in a hammock made from a parachute! This Share The Care™ group has made it possible for me to lead a very full life. I urge you to get a copy of the book now. It will save your family.
MDA offers a monthly support group to assist both caregivers and clients alike. I bring this up now to again reassure you that comfort and support are there. Just sharing information makes dealing with the unknown doable. MDA offers grounding to the victims of ALS and to their family and friends.
While I am not a doctor and am not qualified to give you any medical advice, I would like to share some of the ways in which we've managed this illness and its various complications. It is important to deal with the physical changes of your progression on a proactive basis.
First, for me, a cane was needed. I accumulated quite an interesting set of canes! Next, came my cherry red walker with wheels. That walker went everywhere...New York, Oklahoma, San Francisco, the Big Island and Kauai. Well traveled, I'd say. By the way - do you know that there are websites devoted to travel for ALS patients?
Next came the day I broke my foot which permanently put me in a wheelchair. Again, MDA helped pay for part of the cost. Up to the time I broke my foot, I wheeled around on a yellow scooter, supplemented by the walker. MDA can help you locate all these resources and assist in funding. I'd like to note that we use both Five Star Transcare and Hawaii Patient Transports to get me around town. Both companies are reliable and affordable and have caring and sensitive staff.
This next suggestion will save your caregivers' backs and enable you to get up for the activities you need, both for mental and physical health. I highly recommend getting a Hoyer Lift! Your insurance may cover this expense. Using a hoyer keeps your joints flexible because you are bending every joint when being turned and lifted.
In the early stages of ALS, especially with upper body weakness first, it may be helpful and necessary for you to get a sleep test. This will enable you to qualify for a BiPap machine which, although unattractive, assists your sleep at night. You will be amazed at how much better you will feel, even after the first night. For some of you, the BiPap will give you the first good night's sleep in months or years. You cannot qualify for one without the sleep test. Queens Medical Center has a new restful sleep test area.
Next, I urge you to get an air mattress. Ours is a Hill Rom and because of it, I have never had a bedsore! Although I also give credit to my nurses and Peg's Legs for this - we cannot survive by air mattress alone! Unfortunately, most insurance companies will not cover an air mattress until you get a stage two bedsore which is outrageous.
It was about March of 2003 that my right hand, my painting hand, became paralyzed. Immediately, I started using hand and wrist braces to prevent my hands from atrophying in a curled position. I cannot stress how important it is to use these braces early! Once the hand curls it is extremely difficult to bend them back with physical therapy. Also the unnatural curling will cause pain later in upper arm muscles.
As soon as you can't walk it's time to get boots to prevent foot drop, another situation which can be avoided. I have minimal foot drop and no heel sores thanks to religiously wearing these foot braces that hold up the foot so that the heel touches nothing but air. Eventually, some, but not all of you may begin to experience pain, especially around the stoma area if you are on a ventilator. Also muscle cramps and pain in the buttocks, an area I refer to as my "sit down" bones. However, I have rarely experienced cramps, because since my diagnosis I have used a "chi machine" which is also called a stress reliever. I rest my legs on it and it gently moves them back and forth. I use it all night and I believe that the movement has not only helped prevent cramping, but also bedsores. The one we have is an "Evergain Stressbuster/Aerobic Exerciser".
Back to pain…don't be a martyr! Of course I have no ability to give medical advice and we all react differently to different medications. However, if you need pain management, please talk to your doctor. I know strong pain medication is controversial but if it allows me a more comfortable and, perhaps, a longer life, I personally think it is worth it.
As you begin to lose your ability to communicate, I recommend using a spell chart like the one I use (also called and "eye-transfer system"). We have tried several variations and have found this one the easiest and fastest. As your facial muscles weaken, your jaw may drop enough to prevent you from completely closing your mouth. You may also bite the inside cheeks. Ask your caregivers to be aware of your jaw drop. We designed a chin strap that keeps the jaw aligned. I am more comfortable when my mouth is closed airtight. If my mouth is open too long, the inside dries out and causes the saliva to burn. It can be quite painful. I don't think we've come up with the optimum chin strap but we are trying.
It must be noted that when I lost the ability to move my jaw muscles, I became almost deaf, not realizing that my eustation tubes had collapsed. We discovered that the collapsed tubes prevented the eardrum from working. Good news! The doctor cleaned out the wax and liquid and inserted tiny tubes into the eardrum. Immediately it felt like everyone was shouting at me!
It took almost three years to accept that perhaps this disease was progressing. I was furious about my fallen brows! This was also in the period of time when even my jaws had weakened so much that I couldn't paint any longer. I started using the ERICA computer from Eye Response Technologies in May, a few months later. What a release it was to type and paint (digitally) again. How we take communication for granted.
Today I feel that I have a full life, treasuring the time with my family, enjoying visits from friends, painting with my ERICA and with brain waves, directing art projects, and writing. At this stage of ALS, I'm fully paralyzed, even my eye lids don't shut anymore but with special eye drops and protective gels for sleeping, my eyes work just fine. Again, we hit a bump and we find another solution!
ALS will take you and your family on an emotional journey from day one. It is easy to be seduced by quick fixes and medical quacks. I spent a small fortune unwisely in my first year trying protocols that simply couldn't cure ALS. The money spent on a desperate search is regrettable. During the first twelve months of this disease I did some things that were rather stressful to my family. I also threw care to the winds spending money foolishly, not thinking about what a financial strain this illness would be on me and my family. I wisely turned over my finances to my daughter-in-law and to my son, who helped me to get things straightened out and start planning for the future.
I tell you some of these stories to illustrate how important it is to face your gradual loss of control and to be proactive about the changes you know are coming. I say this with great hypocrisy because I really didn't fully acknowledge my ALS until, fully paralyzed, I awoke on February 24, 2005 to what I refer to as The Day My Eyebrows Fell.
Also, be sure to have your legal affairs in order. Right after diagnosis I contacted an attorney and within a week I had an updated will, trust, and living will. I also met with close friends and over a very good wine and dinner; we planned a funeral and my own list of "Who Gets What". I cannot tell you how easy this will be on your family.
Many of you have probably have not yet reached the decision to go on the ventilator. It is a difficult situation at best. I am not able to advise you. Today I can only hope to help by telling my own story. If you go on the vent, use your additional time while alive to live, not vegetate in depression. We have the benefit of time.
This is the time to start recording your thoughts and your own philosophy by digital video, audio tape, and writing or typing. I cannot emphasize how important your words will be for your loved ones. On the day of my mother's funeral, we found a journal she had kept during her illness. It is a family treasure because it gave us insight about someone we dearly loved, but were too young to know her as adults. So try to complete letters and tapes before you lose your ability to write or speak and then continue to write with assistive technology.
This gift of knowing that death may be close should be spent dealing with the most important issues facing any family. I consider those to be confronting anger, denial, expressing love and finding peace. We are able now to communicate as a family but it took almost four years to get to this level because of my own unexpressed anger and denial. How difficult it has been for my family and friends. I was so engrossed in my own fear and anger that I became defensive and confused by the reactions of the people around. But, with the guidance of Clarence Liu of Hospice, we've broken through. I'm still ambivalent about dying but I'm not fearful. Besides, I have so many projects to work on that I'm reassured of a year or two! The Creator has a sense of humor!
Remember that ALS has given us the GIFT OF TIME so please use it well. And make the choice to LIVE WITH not DIE FROM your illness.
To see her beautiful art and read more from and about Peggy please visit Peggy's Website
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