Wendy started dating Stephen Heywood shortly after his first ALS symptoms developed. The couple married in February 2000, and their son, Alex, was born later that year. Here, Wendy talks about being a caregiver for Stephen -- the complexities of his daily routine and his proactive role in his care; how she balanced the roles of wife, mother and caregiver; and where she found strength and support.
You knew Stephen had ALS when you married him, but what was the most unexpected challenge you faced in caring for him over time?
This is a very thought-provoking question because many things that came up seemed unexpected, even though they weren't. When Stephen was first diagnosed I chose to live in a vast river of denial! I really could not imagine the strapping young man by my side ever being in a wheelchair, not talking and not holding our child. When the conversation would shift to future needs I would say, "You're not even going to need a wheelchair, so why are we having this conversation?"
That's not to say that I didn't imagine we had trials ahead of us. I did, however, truly believe we could cure Stephen if we all worked hard enough. After all, isn't that the way life is supposed to work? Hard work equals rewards? That was the greatest, most unexpected challenge for me: that we could all work so hard; that Jamie and an amazingly intelligent, hard-working group of individuals could put most of their daily lives into finding a cure for ALS [by founding The ALS Therapy Development Institute (ALS TDI)], and still Stephen's condition progressed. He moved from a walker to a wheelchair. He moved from not speaking to not breathing on his own. No matter how hard we worked, he still was not cured. Although I firmly believe a cure will be discovered, it was very difficult to come to terms with the fact that there would perhaps be no wonder drug discovered during Stephen's lifetime. This was a much harder challenge to face than any amount of work I could put into caregiving.
If there is such a thing, what's an average day like for someone caring for a person with ALS? How did your days change as Stephen's condition progressed?
While I find many patients and caregivers can relate easily to what others are going through, it is also true that everyone handles their care according to their family's structure and needs. In general, I can say it requires time and patience to help a person who is paralyzed and on a trache [breathing tube] to get up for the day. Most patients' joints and appendages are sore and need to be moved in the morning and night. There is the delivering of medications, feeding, dressing, showering, toilet, maintaining skin from breakdown -- all can take hours to complete. If a patient does not have a feeding tube but has trouble swallowing, it can be a painful process for both patient and caregiver at mealtime, since there is not just the time involved in chewing and swallowing the food, but also the fear of possibly choking.
It's funny, but in many ways my load shifted as Stephen worsened, mainly due to our hiring people to help during the day and night. In 2001, Stephen's condition had progressed to him needing help in most all of his daytime and nighttime activities. Alex was a baby during this time, and between helping Stephen throughout the night, getting up to feed Alex and getting Stephen up in the morning, I was completely exhausted.
Stephen is the ultimate caregiver and was adamant about bringing in someone to help me by taking care of him. We signed up for Personal Care Assistance (PCA) through MassHealth (Medicaid) and started out on a small scale by having someone sleep over three nights a week and helping Stephen get up a few mornings. I remember I still had trouble sleeping because I spent most of the night waking up worrying about Stephen. Each year, Medicaid had a nurse assess Stephen's physical state, and as his condition worsened, Medicaid increased the hours they would pay for PCA coverage. Once Stephen was on the trache we had enough coverage to hire people full-time and long-term. These people became crucial to all our daily survival.
Where did you seek out training and information to help prepare you to care for Stephen? What resources did you find most helpful?
Our medical databases were the ones in Jamie's and Stephen's heads! Jamie was amazing in his drive to research the equipment, medications and medical interventions Stephen would need throughout each step of his progression. Stephen spent much time on the computer researching other patients' stories and comparing all types of equipment he would need to meet his needs. We were always one step ahead because of this.
For instance, Jamie suggested we make a preemptive strike and get the feeding tube before Stephen's weight loss became a critical issue and would perhaps lead to less physical stability and possible emergency medical intervention. Stephen thrived after receiving the feeding tube, and again after getting the trache. Getting enough nutrition and air made a huge difference physically as he did not tire as quickly when these two life necessities were satiated.
There is a running joke in our family that if you have to have ALS, it helps to have it in a family of engineers! Stephen's father John and his brothers Jamie and Ben are all MIT-trained engineers. Combined with Stephen's career as a master craftsman, the four of them made for a unique team that custom-designed and integrated almost all of the equipment Stephen used. Jamie and Stephen worked together to design hand switches for the computer, a custom mouse for video games, and power systems for the wheelchair. Stephen was also able to easily renovate our home himself in such a way that most of the changes made for accessibility were cleverly disguised behind a lush veil of craftsmanship.
As a family, we made sure that Stephen was never tethered to the house or his chair. Stephen's vent [ventilator] (we chose a small portable one) and computer were powered off of his wheelchair through Jamie's magnificent wiring capabilities. We could hop in the van and get to a movie, the park, most anywhere locally in a fairly quick time.
Another area in which we were incredibly lucky was that when Stephen was first diagnosed, he was assigned an ALS case manager, Colleen Venti-Gould, at his insurance company. She handled every aspect of every concern we brought to her. Sadly, the insurance company no longer has local case managers. Questions are now directed to an office at an 800 number. We had a great sense of loss when the company eliminated local case managers; we felt that no one knew us and our situation well enough to help Stephen move easily through the medical world (a very daunting task for anyone!).
We also had great help from Mary Beth Parks, who is an ALS nurse and who worked at ALS TDI helping patients and answering questions. We hired Mary Beth to help us the first three days that Stephen was home from the hospital with the trache and his ventilator. That is a truly overwhelming time for everyone and having a nurse around for a few days until you begin to feel more confident is crucial to every family who takes this step.
The film mostly depicts you and the rest of the Heywood family caring for Stephen. What other people and resources played a part in his care?
Over the years we had a number of wonderful people who worked for us. We started on a small basis with one woman, Gayle Dolly, the caregiver helping Stephen to bed in the film. This grew to two part-time people, and eventually we assembled a team of four people. Having a team was a huge advantage for us because then we were not relying on one or two people to meet all of our needs, and we had backup if someone was sick or took a vacation. Everyone worked very well together and was great at working out any scheduling conflicts among themselves, taking much of the weight off of our shoulders.
Except for only a few people, everyone we hired was a referral from someone already working for us. In this way, we at one time had three men from Uganda working for us as a team. Each was attending nursing school and was able to have much hands-on learning while working for us! One man in particular, Dickenz Tamukedde, was still working for us when Stephen passed away. Dickenz took care of Stephen Monday through Friday during the day. He showered, dressed and shaved Stephen. He was a unique individual in that he would not only get Stephen up and ready for his day, but he would also drive Stephen in the van if he needed to be anywhere, or walk Stephen to Jamie's house while Stephen was working on renovating Jamie's carriage house. Often, our son Alex would accompany them on their errands as Stephen loved taking Alex places with him. Dickenz never found this to be in the least difficult for him! Another devoted helper was Nicole Bennett, who was with us for three years and often accompanied Stephen when we traveled.
Most importantly, Stephen was always in charge of his care and made sure to keep everyone around him informed of his needs. He knew his body and what he needed very well and he was always prepared to take the next step necessary for his care. Stephen was very good at managing the team who worked for him. He always had written out instructions for whoever was coming in that evening. People always knew what Stephen needed, and he was quite adept at directing them when they needed more guidance.
Something many caregivers talk about is how hard it is to find time to take care of yourself when you are busy caring for another person, and how your own mental and physical health can become jeopardized. At the same time, caregivers often feel guilty taking time for themselves. How did you deal with this tension? Did you join any support groups?
I keep saying we were lucky, but I do think we were incredibly blessed with great help. Some patients are reluctant to allow help into the home. I do see the difficulty in doing this because the ALS patient loses so much of their privacy. So too does the rest of the family, but not on an equally intimate setting as the patient. Allowing someone outside the network of family and friends to take care of you when you are in a vulnerable state is a nerve-wracking idea. Stephen was adamant about having help though, and this greatly contributed to our family having the luxury of being a family rather than constant caregivers.
I always took care of Stephen on Saturday nights, and this was our family night, with Alex in bed with us. On Sundays I got Stephen up and we would then do things with Alex. My mother-in-law, Peggy, once said to me that she heard a woman say, "I can be a wife and I can be a caregiver, but I can't be both." And so both Peggy and Stephen were determined that Stephen and I would have a family and relationship.
Yet, I did often feel guilty when going out with friends. I think it is the nature of the caregiving beast that it is difficult to leave the person you're caring for, even for a short period. There is always the fear that something will happen if you are not there to care for them personally.
Stephen helped me deal with everything always. He was the most gifted individual I've ever met. He had a way of making everything OK even when it clearly was not. He encouraged me to join a book group, to continue work on my master's in English, to keep writing and to go out with my friends, which is what I would have done if he had not had ALS. I did not attend a support group (though I would recommend one to anyone who seeks help, as I have heard wonderful things about various groups). I had great support from my family and community. And I have a number of close friends who provided great love and support, and they always took great pains to work around my schedule so I could go out with minimal guilt.
The film shows that Stephen's family was extremely active in his life. Having them as such a large part of Stephen's care routine, was it ever hard to find time to be alone with your husband and your son?
YES! But again, that's not because of his family -- it's the nature of ALS. Visiting nurses, care attendants, physical therapists, everyone is always in your house. Also, Stephen was participating in the Cyberkinetics BrainGate study. He'd had a sensor implanted on his motor cortex and was participating in a study session twice a week for several hours each session. Our house was a buzz of computers, cameras and technicians during these times. But we would have never considered not participating in this study as it is such an important step in the research on people with paralysis. And without Stephen's participation, the scientific community wouldn't have known how responsive the neurons in an ALS patient could be. [See a short video explanation of Stephen's involvement with BrainGate.]
We did spend many evenings together and we kept the weekend for us and for family. Stephen's parents, John and Peggy, loved to spend time with Alex so that Stephen and I could go on dates. We loved going to the movies, and when there was a great kid's movie in the theater, we always took Alex (and often a friend of his) to see it.
After Stephen was diagnosed, your family took several big trips abroad. Can you talk about the challenges and rewards of taking on those trips?
During our trip to Paris and England in 1999, Stephen tripped a few times on the cobbled streets of both countries. But mainly, these trips were not clouded by ALS symptoms. It was our later trips when logistics became more complicated. In 2001, we took a trip to Greece, and there was something kind of exciting and funny in pushing a wheelchair around the Plaka. It's the oldest section of Athens, and most of the streets are closed to automobile traffic, but there were often speeding motorcycles and delivery trucks careening down narrow passages. This just made Stephen determine the experience to be all that more thrilling -- would we or wouldn't we collide with the traffic during this outing? And Stephen absolutely loved having his brothers and father take him to the top of the Acropolis in a wheelchair. He regarded it as a great adventure.
Last year, the family went to Sundance to attend the film festival in Park City, Utah. Stephen was on the ventilator, and between me, Peggy and Jamie, we executed that trip like a military campaign! We flew Delta Airlines and I will always be grateful to them for such incredible service. We boarded the plane with quite a few bags of extra medical supplies -- extra vent, back up batteries for the ventilator, suction machine, food and supplies to change the trache and g-tube [gastronomy tube] if necessary ON THE PLANE! We also took Stephen's electric wheelchair, which was stored [in the cargo hold] during the trip. It was a real feat, but not one of us would have ever considered not doing it. Stephen had a fabulous time, and so did all of us. And the amazement and delight of the audiences at each screening of So Much So Fast that we attended was worth every bit of the work to get on that plane.
Every year, our family drives 12 hours to the Outer Banks of North Carolina. Peggy's extended family of roughly 50 relatives meets there every year and it is a really great time for everyone to visit and relax together. Stephen would never have stayed home and missed the week at the beach. Nor would he miss seeing Alex playing joyfully at the beach, just as he did as a boy.
Ours is a family who loves challenges and overcoming obstacles. These trips were always a treat in spite of any snags we encountered.
In the film, there's a clip where you talk about an occasion when you got angry at Stephen for seemingly losing hope by talking about a time when he might not be around. How did you stay hopeful?
When I see that clip now I remember that conversation with Stephen vividly, and I know that Stephen of course had never lost hope, he was simply being realistic. And, as I said earlier, I was not realistic in the beginning about the journey we had agreed to take on together and was likely to view any talk about a future without Stephen as losing hope. In truth, Stephen is the one who always had hope and who kept me grounded and hopeful. He had the ability to make me honestly believe everything would be fine and that he would find a way to take care of everything. He worked very hard at taking care of me and Alex and his family. He gave as much as he got in love and care.
What advice do you have for other people who face caring for a loved one with ALS?
During an ALS 101 [workshop] (run by ALS TDI) a few years back, I walked into the bathroom and found a woman inside crying. Her boyfriend was newly diagnosed and she was scared. She said, "I don't think I can do this. I don't think I'm strong enough." I told her it was okay if she chose not to be a part of ALS -- it is a rough road, and she would have to decide what she could handle in life. But I went on to tell her that she could very well surprise herself with what she's capable of. Sometimes we just never know what wells of strength we have deep inside of us until we're called to draw off of them.
I do think one of the most important pieces of advice I could ever pass on is to be willing to accept the help that people offer. It goes against the grain of most people's thinking (it certainly went against ours!) to take help, but community support made a world of difference for us. And it was a necessity for our survival as a family and just as humans struggling to get by. Without the community of Grace Church, ALS families and the staff of ALS TDI, friends, neighbors and relatives, I don't know how we would have gotten through some of the jams we encountered. People really do want to help, so let them.