ALS AND Share The Care™ An Interview with Kimi

Q & A: HOW THEY MADE Share The Care™ WORK FOR THEIR NEEDS

Kimi Morton, 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?

Our STC 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.