Maybe I am still in new year, new thinking mode, but this quote resonates with me in a special way. I feel that I have opened a door and stepped out of intense grief. Caregiving for my dad and Ben, especially when I was juggling care for both of them- literally going between Long Island and my home in Manhattan- was exhausting, challenging and devastating, but it was also the most loving, meaningful and rewarding experience in my life. After it was over, I floundered. Grief has been hard, and it has been grief times two. I’ve spent this time with many lows, then highs followed by extreme lows, and now I finally find more balance. I am always careful when I say this, because I never want to convey that I’m “over it” or I’ve “moved on.” But, I think I’m learning to coexist better with grief. And I’ve been opening some new doors.
After Ben “left” as he called it, I was so often told that it is now time for me. Well, that was fine, but I was not exactly sure how to fill that time. I missed my dad and I missed Ben and I even missed the caregiving. If you’re immersed in caregiving and its ugly parts, it may be difficult to see how I missed caregiving, but you must realize that I am writing this after nearly a year and a half of losing Ben to ALS, and almost 3 years of losing my dad. Time, reflection, and perspective gained are important. Nothing comes easily.
Life as a caregiver was stressful, exhausting, and it certainly kept me busy and on my toes! When I was the caregiver for my dad, at one point I took family leave and traveled about five hours every day to visit him, first at the hospital and then at the hospice. During this time, Ben was fairly comfortable staying alone during the day, and we had friends who could help if needed. And, indeed, there were occasions when they were needed- sometimes he could not stand up, other times he fell. Not being there was very difficult, because I was wondering, hoping that Ben was taken care of, until I would get an update. When I was at work, I kept my cell phone with me at all times, in case anyone needed to reach me.
I probably don’t need to say that I was devastated by my dad’s passing away. We were very close and I had also lost my mom. Ben was also distraught by this loss. I think Ben lived in such denial of his ALS and its ultimate outcome, that losing my dad made it too real for him. Although his daughter stayed with him on the day of the funeral, that night it was back to caregiving for me. We were both sad, but I was too busy taking care of Ben to really reflect on my loss. And, I was worried about Ben being too preoccupied with death. I resented that somewhat, because I did need time for my own feelings, but it was not Ben’s fault that he needed help and his immediate needs had to be the priority. Emotions can always be dealt with later, right? Well, not really. If you try boxing up your feelings, they are going to show up in any number of ways, including attitude, behavior and physical ailments. If you’re a caregiver, please remember that you matter.
With only Ben to care for, you would think that life got easier. Unfortunately, his ALS was progressing. Ben was very reluctant to get additional home care. Some of it was due to his lack of acceptance of the progression of ALS. He told me that I didn’t do much for him, or have to do much, which was untrue and, since I want to be honest here, it hurt and upset me, and left me wondering if I was good at what I was doing. Ben was not entitled to home health aides through insurance. I missed a lot of days of work if we were up all night or if I woke up and he was not feeling well, or he felt uncomfortable staying alone. When he awoke one morning and finally admitted he was afraid to be alone, I stayed home from school and made a lot of phone calls, finding him private care for just a few hours a day during the week, which was some of the time that I was at work. We put all kinds of systems into place for him to contact me, including a medic alert system, texting me at certain times. He was still alone at times, so I ran home after work, where I was then on duty until I left for work the next morning. In fact, I was never really “off duty,” I was just not physically present at times. And, our systems were not fool-proof. He texted me through his computer and an on-screen virtual keyboard, and if the mouse got away from him he did not have enough range of motion to get it back. Also, his voice was not strong. Once, he set off the medic alert device by accident. They did speak to him through the system but they called me to let me know that he had activated the alarm but seemed fine. However, I did not get any response from him when I texted to follow up. I dropped everything and ran home to find him sitting at the computer, absolutely fine, but had had been unable to respond to me because he could not reach his mouse. A few more gray hairs for me!
Even when he was in the hospital, I remained Ben’s caregiver. I was with him at least 12 hours a day, and sometimes overnight. ALS is very isolating. Ben could not use a call button and it was hard for people to communicate with him. He depended on me, but he also took that out on me, which was all understandable, even if upsetting. I supported, advocated for and comforted him on on the ALS journey throughout his experience in the hospital. Looking back, continuing in my role as caregiver was necessary and helpful to the staff, but it also gave me a sense of purpose in the midst of a tremendous feeling of helplessness.
After a summer entirely spent in the hospital and concluding with his loss, I had to return to work (school) in just over a week. I was not prepared. People told me it would be good to return to my routine. What they did not realize was that it was not my routine. My routine at work involved caregiving. It was texting with Ben. It was being in touch with the doctors and teams who worked with him. It was coordinating with his home health aides. It was walking around with my phone. Many a day that I left school, I cried because I missed my rituals of calling my dad and saying, “I’m free!” and texting Ben to see if he needed me to run any errands.
I did not want my memories of ALS to define my relationship with Ben, but I found that I did define myself as a caregiver. I joined support groups where the people said they would never want to be a caregiver again. I, on the other hand, missed not the illnesses and their ugliness, but the caring in the caregiving.
Maybe as a teacher I am a nurturer, but caregiving is something I cannot let go of. I started this blog as a way of sorting out my own thoughts, but also with the hope of helping others by sharing my experiences and things that supported and inspired me. Of course, with me it has to have a Disney twist! I did not realize that I opened up a new door when I began to blog. In a way, through Pixie Dust For Caregivers I discovered that caregiving is ingrained in who I am. Social media connected me with several wonderful caregivers and caregiving organizations and forums through which I have been able to exchange ideas and give support. I wish I had known about them when my dad and Ben were here and I was struggling in so many ways. I also enrolled in a caregiving consultant certificate program offered through Caregiving.com. There is a sense of responsibility that I feel to other caregivers, and camaraderie that I feel with them. It is also important to me that I remain engaged in the fight to defeat ALS and I feel strongly that supporting the emotional needs of caregivers of people with ALS is one way that I can do this. Through this certificate program I have been given an opportunity to participate in a unique virtual “performance” of the six stages of caregiving, to be broadcast online by Caregiving.com on Sunday, February 5. Learn more here. Please join us.
Another door I opened is that I have volunteered to work with my local chapter of ALS to create and deliver events for children who have a parent with ALS. My background is in arts and education and I am passionate about the power of the arts in our lives. When I heard that they have done crafts and other events for these children, it felt so right to me to be a part of it, and I am grateful and excited that I will participate in these efforts.
I could never have jumped into these endeavors immediately after I lost my dad and Ben. I could not have written my blog while I was going through the difficult experiences. I did write in my journal, but when I revisit those entries, I see that my thoughts were very scattered. I take to heart my favorite quote, from Christopher Robin to Winnie the Pooh: “You are Braver than you Believe, Stronger than you Seem and Smarter than you Think.” I am an emotional person and I easily cry, but I am strong and I lived through and handled challenging caregiving situations creatively, and hopefully, at least somewhat intelligently and successfully.
For people who believe that blogging and maintaining such a close connection to my relationship with Ben and with caregiving keeps me in the past, all I can say is that I disagree. I have taken my experiences and I am now ready and able to grow from them. I am learning about myself in ways that I believe are helping me to face the future, while maintaining my commitment to honor those I’ve loved and lost and, in this process, hopefully, helping others. I am emerging from intense grief and letting more light into my life.
I have begun to open different doors to begin to reshape my life. I hope you’ll join me on this journey and make some discoveries of your own! Always feel free to share and comment here!