Frontline Initiative Healthcare
From hospice to fishing:
Families, DSPs, and healthcare providers working together
Frontline Initiative interviewed Daniel and Joan Gacki and Kelly Stowell from Lifeworks Services, an organization that serves the community and people with disabilities as they live and work together in Minnesota. In partnership with her son Daniel, Joan shared their arduous journey to achieve health in the midst of a dire prognosis. Kelly provided support to Daniel and his family during this time. Her testimony demonstrates effective advocacy, leadership, and care. Together, their stories and insights offer valuable lessons to be drawn upon in practice.
Would you please describe the health crisis you experienced?
Joan Gacki: Last summer my son Daniel had pneumonia, and he was hospitalized twice. He seemed to be improving with antibiotics but in September he started going downhill again. We took him to many different specialists, some not familiar with people with intellectual and developmental disabilities (I/DD). We saw a pulmonologist at our local hospital, and his team was convinced that it was not pneumonia again. Daniel’s chest x-rays were very hard to read and his labs were inconclusive.
Daniel’s health kept deteriorating to the point where we took him to Gillette Specialty Healthcare, a hospital that has expertise serving people with I/DD. His neurologist and neurosurgeon said that Daniel’s brain stem was aging rapidly and it was “just his time.” Daniel was then referred to the palliative care team and put on hospice care at home. We started a Caring Bridge webpage to keep family and friends informed of any updates. But something kept bothering me and my husband. Why did this come on so suddenly?
After a very difficult week Daniel was given his last rites. He was sleeping 20 hours a day. Because of his erratic breathing, there were two or three times we thought that this would be the last night we would have him with us. Then after a couple weeks of this I thought, “I am not buying this,” because he would wake up and be perky and happy for a while and then he would drift off again into a deep sleep. It didn’t make sense. So we brought him back to specialty healthcare to see a doctor in pulmonology. After examining Daniel and learning what had been going on, he said, “I’m not buying this either! We’re not doing any more tests. We are going to treat him as if he had pneumonia. We have nothing to lose.”
He put Daniel on two different nebulizer treatments three times a day, antibiotics and continuous oxygen. Almost immediately after the first nebulizing treatment, Daniel started to improve. I remember during that time I went out for a short time and called my husband to check on Daniel. I asked, “What is that noise in the background?” Unbelievably, Daniel was laughing! This was the end of November and he slowly started to improve. So he obviously did have pneumonia, even though his tests were negative. We needed that person who was going to say, “Ok, let’s just try something. If it doesn’t work, it doesn’t work. But you just have to keep trying.”
On February 6th, Daniel was able to leave hospice care. His hospice team didn’t even know which papers to fill out! That was a wonderful day. He turned 31-years-old the next day and we had a big celebration! Daniel then started gradually returning to Lifeworks.
What kinds of support did you receive during this time?
Joan: We had a lot of support from friends and family. Lifeworks was unbelievable. Kelly and Kayla, Support Specialists, were wonderful. They were calling and coming over all the time. They were at the house the night we thought Daniel was dying and they have been involved ever since. It was so reassuring that so many people cared about Daniel. We set up Skype video calls so Daniel could hear his friends. It was nice to know that so many people cared about him outside of our family.
Kelly Stowell: I was so used to seeing Daniel every day. His friends were always asking about him while he was out. I just did whatever I could to keep communication between his home and our program. There wasn’t a whole lot we could do, but we wanted to let the family know that we were thinking about them. We visited when we could. We made sure to keep it so we weren’t intruding on the family. But we cared so much about Daniel and his family. We wanted to make sure they knew that we were still here for them, and that all his friends still cared about him. There was one day we Skyped…
Joan (laughing): …Kelly was including people from all over the program and the office on that Skype call, including the bus driver. There were friends I didn’t even know about who were talking to him.
What was it like to receive this support?
Joan: We never felt isolated because I knew the Lifeworks staff were always there for us. The support that came from Lifeworks was overwhelming and it just felt so reassuring. Kelly and Kayla kept coming over. To keep that connection alive is incredible because five months is a long time to be out of a program. I kept asking the program staff, “Are you sure that he won’t lose his space?” They said, “We will always have a place for Daniel.” It was the same with transportation. They told us that they would always have a place for him on the bus. They took us beyond the moment. It helped us look into the future and say, “Daniel, they’re waiting for you! Get well so you can go back!” I never thought we’d be here today having this conversation. Having Daniel here is just amazing to me.
Kelly: He is amazing. Since he’s been back, he’s been out fishing and even caught the biggest fish of the day. It is so nice to see him back enjoying activities and his friends. He will always show us that he is happy and give us a big smile.
What advice would you give DSPs about promoting individuals’ health and wellbeing?
Kelly: Communication is so important. Sometimes there are no words that can describe how you feel. But checking in, offering support, and just being there to hold a person’s hand are all helpful. I would call Joan and ask, “How can we help?” I would visit and make sure Daniel was comfortable. I would check updates on his health status through the Caring Bridge webpage. I suggested we use Skype, which worked great.
Communication with healthcare practitioners is key. It’s about getting someone to listen to you. You may have to emphasize when something is still wrong and not being treated effectively. You may have to send a message that “I’m not going away!” Or if the person is not getting better, you can work to find another practitioner.
I also think it’s important to respect boundaries and privacy. It is hard to know where the boundaries are, so I took direction from the family. I would call and say, “Are you still up for a visitor?” I would call right before I would head over because his condition could change. Sometimes he needed rest and didn’t need to be interrupted by people moving through his house. I let the family set the pace.
How important is having an advocate during these times?
Joan: I cannot emphasize enough that when a person with a disability cannot communicate effectively, the person needs an advocate for health issues and healthcare. When I was working in a nursing home, I always had this dream that this whole new profession of healthcare advocacy would start up for people unable to help themselves—a personal advocate who can step in and make sure that medical needs are being met. People would tell me how they were miserable because their dentures didn’t fit, or their hearing aid didn’t work, or they needed new glasses. The same kinds of things happen to people with I/DD.
Would you share some insights about effective healthcare for people with I/DD?
Joan: I think the most important thing is to find medical practitioners who are familiar with people with disabilities. And even if they are not, you need to find someone who will listen to you and who will think outside the box, because every single patient is different. What’s typical for one patient is atypical for another. For example, at one clinic, I heard, “Well, we did some tests, and everything looks fine. There’s nothing more we can do.” It wasn’t cruel, but they were relying only on one set of lab results. Really I think it takes a great practitioner to be able to say, “I am going to send you to someone else who is more familiar with the unique needs of Daniel.” It was really nice to know that I/DD specialty healthcare services are out there… especially a team that has caring and involved staff.
What have you learned from this experience?
Kelly: I am in awe of the strength and courage of the family. (To Joan) With your spirit you kept pushing forward. You knew not to just accept the first diagnosis. You had that instinct that it just didn’t seem right. There were weeks and weeks where you were going from specialist to specialist. I’m sure it was just exhausting. Some days you had four to five appointments. You kept going and going. This was amazing, and I learned how amazing this family is.