Caregiver

Milestones- Preferring the Very Merry Un-Birthday

Walt Disney World, Grief, ALS

At the Crystal Palace

(I wrote this late last night) Today, October 27, is my birthday. My fourth birthday without Ben. I still seem to measure time that way. It’s still emotional to think of celebrating events without him. I can’t seem to feel happy. I want to indulge in that childish delight about a birthday, but I can’t shake the sadness. I always struggle on milestone events with not having Ben or my mom, dad and grandma- the people I was closest to- with me. Yet, it’s not just that, or guilt about continuing to navigate life when they aren’t here and conveying in any way that they are even a little bit forgotten. I don’t feel comfortable celebrating myself and, although I am so grateful for good friends and birthday wishes, I am much more comfortable celebrating other people. Maybe that says something about my self-esteem as much as it does about grief, which is definitely something I need to think about.

I made plans with a good friend to go to the theater, which is always one of my favorite things to do, and I preferred to think about a show rather than my birthday. It was a nasty day with a nor’easter, which seemed fitting for my mood. We saw Oklahoma! At St. Anne’s Warehouse in Brooklyn, and although we were looking forward to exploring DUMBO, a neighborhood I had never visited, the storm limited our plan. I knew to expect that the show was a dark interpretation, which was sort of unusual for this musical, but also appropriate for my mood. Throughout the day, I got sweet texts and calls and posts on Facebook, which touched my heart. I really wanted to be happy, but trying to act happy actually made me sadder. Ironically, if it had not been my birthday, it would have been a perfectly great day. Maybe the March Hare was onto something when he talked about a very merry un-birthday. I find joy in so many things and from so many people. Those are my “un-birthday” gifts.

I think about the wonderful birthdays I had with Ben. I loved that he always wanted me to feel special on my birthday, and he often planned little surprises for me. That was more about the romance than about the birthday. Now, I feel awkward making or being a part of the planning of my birthday plans. For so long, I defined myself by the way I cared for my dad and Ben. I planned surprises for Ben and took opportunities to celebrate him and us whenever I could find them. I need to learn to feel the confidence and comfort in taking care of and acknowledging myself.

Once again, after a good cry, I comforted myself with the memories of birthdays with Ben. I’ve shared these in prior posts, but please indulge my sharing some of my favorite Walt Disney World birthday memories with Ben:

The time I asked Mickey how old I looked and he held his hand up and I asked if he thought I looked 5. He shook his head and held his hand up again and I asked if he meant 50. This went on for a while until he held up one finger at a time and I realized that he only had 4 fingers. He looked up at the ceiling and held his hand to his forehead and when I looked over at Ben, he and the PhotoPass photographer were laughing hysterically. Ben couldn’t believe that I didn’t know my Disney buddies had 4 fingers and he said the photographer was laughing so hard that she couldn’t take a picture. From that point on, Ben and I only “high four-ed” each other.

Mickey has Four Fingers!

The birthday holiday we took there when Ben proposed to me. The actual proposal was on Halloween because he knew I would love that. I did.

Mickey congratulated us on our engagement!

Birthday hugs from Pooh, Eeyore, Tigger and Piglet at the Crystal Palace, because I had to have birthday lunch with my friends from the 100 Acre Woods. I was as gleeful as a 5-year-old when the waiters sang “Happy Birthday” to me. Ben surprised me with a cake once and Pooh kissed my hand. I’ve kept all the confetti and the birthday cards.

Walt Disney, Walt Disney World, ALS, Caregiver, Grief

The little girl at the Akershus Restaurant whom I noticed was intently watching Ben and me as we struggled a bit to get him into a chair and then as I cut his food and helped him to eat. When she saw the waiter bring me a little cake with a candle and sing happy birthday to me, she came over and wished me a happy birthday and gave me a hug. Kids have such intuition, and her mom and I both had tears in our eyes.

Dancing with Stitch and Goofy at the Halloween party while Ben sat in his scooter, laughed at me (with love) and videotaped it. As if anyone who knows me would be shocked!!

Getting extra candy when we went trick-or-treating at Mickey’s Halloween Party because I announced that it was my birthday, probably more excitedly than most of the little kids. Between Ben in the electric wheelchair and my birthday, we did very well collecting candy!

Having so much fun tasting the foods at the various pavilions during the Food & Wine Festival. Even though he needed help with food, and he couldn’t eat everything he wanted, Ben loved to be at Epcot and he didn’t let himself lament what he couldn’t do or eat.  His attitude was incredible.

And then there were the magical birthday surprises that were not spent at Walt Disney World. There was a time that my birthday fell on parent teacher conference night. Ben and I had decided that we would celebrate over the weekend instead and it was no big deal. He picked me up at school, as he always did after evening events, and when we got to my apartment, I was delightfully surprised to see that he had decorated with balloons, flowers, a cake and some of my Disney toys all around the decorations. He had done all of this after work and before meeting me. That was Ben-always romantic.

I am grateful to always have those very sweet memories, and so many more. I grieve for the birthdays I won’t have with Ben, and also for the birthdays he won’t have. But, I’ve often felt his presence and I know that he is with me, as are my mom, dad and grandma. People say that Ben would want me to be happy and to celebrate. I’m sure that’s true, but it still doesn’t feel quite right. Maybe it will feel better on a very merry un-birthday!

At the Walt Disney World Wishing Well at Cinderella’s Castle- Making a wish!

Disney’s “The Jungle Book”: Baloo, Bagheera and Lessons in Caregiving and Fighting the Shere Khans

Disney’s Animal Kingdom- 2001. Ben was psyched to meet Baloo!

Disney’s The Jungle Book celebrated the anniversary of its 1967 release just this past week on Thursday, October 18. Of course, I had to re-watch this classic tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by Shere Khan, the tiger who hates man and is determined to kill Mowgli. It is also a sweet tale of Mowgli’s relationship with Bagheera, the wise panther who teaches and watches over him, and Baloo, the big goofy bear who is a great and caring friend. I always smile when I watch this film, because Ben loved Baloo and fancied himself a big,cuddly bear- a description with which I must agree! During my viewing this time, I thought about how much The Jungle Book has to say about a caregiving relationship and how Ben and I confronted ALS.

Bagheera has all the qualities of a good caregiver: patience, the ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and he and Mowgli have a deep friendship and love, but Baloo also needs the guidance of Bagheera. When Baloo resists the reality that Mowgli needs to return to the “man village” and be around people like himself, Bagheera needs to remind Baloo that although he loves his little buddy and thinks of him as a son, he has to see the big picture in caring for Mowgli and that he has to think about what was best for Mowgli and not just for himself. Those are tough choices and I remember them well. Caring for Ben meant never losing sight of what our priorities were. Like Baloo, there were many times when I felt Ben deserved to indulge in any of his whims because I did not know how long he would have that luxury. And, we knew that time was not on his side. Taking him to Walt Disney World for one last visit was a very joyful indulgence. There were also the gut wrenching realities. I remember that after Ben repeatedly said that he wanted to go home from the hospital, I just wanted to honor his wishes and I asked his doctor if it would be possible to bring him home. His doctor, who proved to be my Bagheera, provided the wisdom and the reasoning, and then I had to have those heartbreaking conversations with Ben. There were stressful times when, just like Baloo and Mowgli, we argued and sulked. But, the caring in caregiving never went away and neither did the love.

I suppose that ALS was our Shere Khan. The wolves who raised Mowgli from the time Bagheera found him knew that they could not stand up to Shere Khan. They did not stop loving Mowgli, but they knew that he could not continue to live with them or Shere Khan likely would have killed all of them. Caregiving also comes with these difficult decisions. Sometimes it’s a matter of caregiving becoming so difficult that it poses physical and emotional risks to a caregiver. In Ben’s case, had he not chosen to go to hospice and separate from the vent, he would have had to go to a facility because he could not have lived in our apartment with a tracheostomy, needing 24/7 nursing care. This was not an option we liked but it was one we had to accept. I could relate to the battle in which Shere Khan seriously wounds Baloo- the fight to protect and care for Ben did take a toll on me in many ways, but love and devotion kept me at his side. Just like Shere Khan, ALS was a deadly force, but, unfortunately, in our true story, it was one that we could not outwit or defeat.

I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! But, Baloo was protective of Mowgli and he has a good message. As caregivers, we don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” And yet, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. Try to focus on those things when the stress becomes severe and you start to forget who you were before you were in a caregiving relationship.

As for me, I think I was a combination of Bagheera and Baloo- a dedicated, thoughtful caregiver, acquiring skills and perspective during on the job training, with a sense of humor and incredible klutziness. Importantly, Ben always felt safe and secure with me. How about you? What do you consider the important skills of caregiving? Are you more Bagheera or Baloo?

Rediscovering Myself Through- And After- Caregiving

ALS, Caregiving,Grief,Disney,Pixar,The incrediblesElastigirl.“Your identity is your most valuable possession. Protect it.”

Yesterday, I went to see New York City Ballet perform Jewels. It’s one of the first ballets I ever saw. I saw my first NYC Ballet, The Nutcracker, at age three and was enthralled by ballet from that young age. I read about Jewels and my mom took me to see it at Lincoln Center. How lucky was I? Going to the theater or ballet is my favorite activity and my most loved way to lose myself and feed my soul. As I walked to Lincoln Center, after making a last-minute decision to get a ticket, I thought about my caregiving days. As Ben’s ALS was progressing and he was nervous about being alone, I could not simply make a quick decision to go to the theater or ballet. It had to be planned in advance and Ben had to negotiate with his daughter to stay with him. I went from being someone who saw everything to someone who barely knew what was on Broadway. It was a choice I made with no regrets, and I can still look back and know that I did the right thing for Ben and for me and for us, but I also admit that I did not take care of myself, physically or emotionally.

As I watched the ballet, I thought about how I can now spend my time as I choose. Even after three years, I’m still not entirely comfortable saying that. I don’t want it to be construed as my having any sense of relief that I am free from a burden. It was hard work that was also loving and meaningful, and unquestionably the most important thing I have ever done, although I did lose a part of myself in the process. After I lost my dad and Ben, returning to the theater and ballet helped me distract myself from grief, sort through feelings, and rediscover myself. There were and there continue to be times when events are not as fulfilling and enjoyable as I wish they would be because I profoundly feel Ben’s absence. But, I have established new normals, new routines and an evolving sense of myself. The arts are the way I take care of myself- I can think, imagine, reflect and just enjoy the magic. I feel fortunate that my passion for the arts has always helped me to heal and grow.

When I think back on my caregiving days, I remember that I constantly struggled with feeling detached from life.  I tended to put caring for myself aside, always concerned that worrying about myself was being selfish. Of course, my indulging in arts events seemed so trivial compared to Ben’s battle with ALS. But, as Ben’s needs increased and his denial of that persisted while the devastation clearly affected both of us, I grew more isolated from people and things I loved and I became resentful, angry and frightened. Reconciling those negative feelings and the guilt for feeling them has not been easy.

Throughout my caregiving days, the people around me told me that I HAD TO take time for myself. It really irritated me, because it was stating the obvious but also felt impossible. I could not voice my need to take care of myself. In my mind, since my dad and Ben were ill, they were the ones who mattered. On the occasions that I was able to go out, those things didn’t offer the same satisfaction that they did before, because I never went with Ben, I felt guilty for going out and because I was worried about what was going on at home if I was not there, and lamenting what I missed:  the life we had, who we were before illness took over, the things that I, and we, couldn’t do.

It was through our love for Disney films that I discovered my greatest source of self care. Ben and I loved to watch Disney movies, and what I found was that the films were more than simply distracting and entertaining together time. I was seeing the films in a whole different way when I watched them through the eyes of a caregiver.  They were shedding light on my caregiving situation. Disney films let me feel understood because they tapped exactly what I was feeling and gave me perspective on a situation that was very daunting. They were simultaneously giving me a much needed break from reality and letting me think through my feelings about my reality. While having someone stay with my husband while I went out was sometimes possible, though less and less ideal, I realized that I was so busy thinking that taking care of myself meant planning a major outing, and dwelling on the negatives like the help that I didn’t have, that I didn’t see that taking time to watch a Disney film was also time to reflect and enjoy my own company right within our apartment!

What turned out to be the most valuable thing I did for myself was that I began keeping a journal of the Disney quotes, films and characters that made an impact on me and I wrote about how they related to my experiences in caregiving. Writing was always a passion of mine, but I stopped writing in my journal because I felt like I kept repeating the same issues without finding solutions. By creating this journal, I unexpectedly combined my love of Disney and writing with my caregiving, and held onto a vital part of myself without having to leave home.

Collecting and writing about Disney things gave me an opportunity to reflect on my experiences in a way that was honest about the not great people and things, but also reminded me of why I continued to be a caregiver: love, dedication, a personal desire and sense of responsibility to do the profoundly meaningful work on behalf of people I loved who needed me. As Cinderella said, “they can’t stop me from dreaming.” And, when I began to think that my quotes and experiences could at some point be a book or blog, I had something positive to think and fantasize about and plan for in my future.  It took a year, but I did eventually launch PixieDustForCaregivers.com. It has been an invaluable way to take care of myself, heal and connect with other caregivers.

Sometimes, even very small actions provided a huge dose of self care. For example, the thermos of tea that I drank on my daily 2.5 hour train ride back home after visiting with my dad in hospice became my precious “Abby time” to reflect, listen to meaningful music and read. Yes, my phone was in hand for texts and issues that might arise, but each sip of tea allowed me to take a deep breath and, as Frozen’s Elsa said, Let it Go!”

A requirement for earning my certification as a caregiving consultant was to create a webinar. Since a significant issue during my caregiving days was the concept of losing myself while caregiving and knowing that I was also going to lose Ben, and I have heard similar anecdotes among other caregivers, I decided to create a webinar exploring this theme. Finding Inspiration and Protecting Your Identity During Caregiving explores ways in which I maintained my identity and tapped important parts of myself, often right at home. There are ideas for finding inspiration, protecting your identity and how to make your plans happen. You can see the webinar by clicking here to view it on Caregiving.com.

Today, I will see the new Broadway show, Pretty Woman. A weekend of the arts always does wonders for my soul. And, as I discovered, so does caregiving. Now, I am so proud to have earned my certification as a caregiving consultant. I’m not exactly sure how I’m going to use it, though I know that I one thing I would like to do is work with children who have a parent or family member with ALS. The important thing to me is that I have learned from my experiences, I continue to learn about myself and I protecting my identity and honoring Ben and my dad.

What are you doing for yourself? Please leave comments with your questions, comments, revelations and/or struggles.

July 2014, Breakfast at the Polynesian Hotel.

 

 

Kindness- It’s Pixie Dust For Caregiving!

ALS,Caregiving,Epcot,Walt Disney World

July 2014

In Disney’s live action Cinderella (2015), Cinderella mother advised her to “have courage and be kind.” That phrase became the centerpiece for a lot of merchandise and marketing efforts. I believe it was so well embraced and successful because it was so true, so succinct and yet so wise. Examples of courage abound in their battles with cancer and ALS, and even, I’ve come to realize, in my work as their caregiver. The Mighty, a portal with information about a number of illnesses and personal experiences with these conditions, and for which I am a contributor, created a #KindnessChallenge this month, and it got me to thinking about how fortunate Ben, my dad and I were to have experienced much kindness.

After my dad went to the wonderful VA hospice, the simple acts of decorating his room with his favorite books and his favorite model of the fighter plane he flew when in the Marine Corps, and making a calendar of his favorite pictures, meant the world to him. Bringing a book or article and reading it aloud to him, and even sitting and holding his hand while we watched television were little, and yet big, acts of kindness. At this time, Ben’s ALS was progressing, and as the disease took away his abilities, he sometimes felt that he had little to give. However, he found movies and documentaries that he knew my dad would enjoy and he burned them onto DVDs for my dad to watch. These acts of kindness moved me as much as they did my dad, because we knew that nothing was easy for Ben, and because although Ben could not physically be there for my dad, or even communicate by phone with him, with this kindness Ben let my dad know that he was in his heart.

Sully lent a hand to help Ben out of his electric wheelchair! October 2012

A most gracious act of kindness towards Ben came from the palliative care team at Mount Sinai Medical Center. When Ben was in the hospital after a respiratory crisis, it took him a few weeks to decide to get a feeding tube and tracheostomy. During this time, we had visits from the palliative care team. I was happy to talk to anyone about anything they could possibly do to help Ben. The team asked about his interests and I shared that he loved music and anything to do with computers. Shortly after their visit, Ben had a complication that required that he be intubated, which landed him in the ICU. The ICU staff was wonderful, but there is understandably a lot of anxiety in that unit. Late one afternoon, a man named Todd showed up at Ben’s bedside with a guitar to play for Ben. Although musicians are not generally sent to the ICU, and teams are usually organized by floor within the hospital so Ben could have been discharged from the team on his original floor, the palliative care unit members knew that Ben loved music and they thought he would enjoy it and that it would be good for him. Ben expressed to Todd that he loved everything by the Beatles and any Disney songs and also relaxation music and Todd played several songs as Ben watched so intently- Ben loved to watch musicians. Ben was thrilled and moved to tears. I was, too. On the day that Ben separated from the vent, the team arranged for Todd to once again return and play the guitar, which was an overwhelmingly beautiful and peaceful way for Ben to leave this world. In a busy and huge hospital, people took the time to think of Ben as a person more than as a patient, and they extended a treasured act of kindness. I tried to repay that kindness by donating to the hospital the keyboard that I had given to Ben so that others who enjoy music can embrace it during difficult times.

I, too, received many acts of kindness through the years of caring for my dad and Ben, and after those days had ended. I think about how difficult it was to juggle full-time teaching with full-time caregiving. There were many instances of crisis when I had to rush either to the ER to meet my dad or home to help Ben. In one instance, Ben texted me that he had fallen (he wore his phone around his neck in case of such issues). I ran to my principal that I had to go home but that I would be back after I got Ben settled. When I got home and tried to lift Ben off the ground, I realized that Ben had lost so much strength in his legs that he could not help me in any way. At that time, he probably weighed about 190 pounds. More than two hours later, Ben was still on the floor and I was exhausted and in pain. This was the first such incident, and I did not even think about calling 911. I sent a text to my principal that Ben was still on the floor and it didn’t look like I would make it back to school. Even though it still would not have gotten me back to school in time, my principal offered to travel across the city to come to my apartment with our Assistant Principal to help me to lift Ben. I did not take him up on the offer- but I have never forgotten that kindness extended to Ben and me. In a school system that is increasingly anything but kind to teachers, I remain grateful that my principal was always understanding of my situation, despite many emergencies that required that I leave school early, arrive late, or be absent.

Two Goofy guys! July 2014

Ben showed me much kindness and love over the years. Yes, he gave me lovely gifts, but it was his gestures that truly touched my heart. I’ve written about one of my very favorite memories of kindness was something that Ben did for me during one of our visits to Walt Disney World after his ALS had progressed a bit. Click here for that post. But, he showed me kindness by his sense of humor as I experimented with different foods in the Vitamix, always encouraging and appreciating my efforts. He showed me kindness whenever he texted me that he had asked his private aide to stay an extra hour so that I could stay out- either by myself or with a friend- a little bit longer. He showed me kindness by asking his daughter to stay with him so that I could attend an event and by being happy for me that I enjoyed myself. And, mostly, he showed me kindness with his love and appreciation of me.

Here’s a conversation between Piglet and Pooh from Disney’s Christopher Robin that I believe sums up the role of kindness at its most simple and most complicated.

“I don’t feel very much like Pooh today,” said Pooh.

“There there,” said Piglet. “I’ll bring you tea and honey until you do.”

Kindness can be a matter of being present, sometimes it’s being a good listener, sometimes it’s ensuring that routines- including medications- are followed. Mostly, it’s about caring to figure out exactly what will soothe someone in the moment. For Pooh, honey was always a good solution. It’s not always that easy. But communicating the desire to be there, to help and support, can only strengthen a bond. Although we could lose patience with each other, and sometimes we needed our moments to feel down, Ben knew that I would always at least try to find the thing that would be his tea and honey.  Often, things like a smile, a thank you, a kiss, holding hands, remembering something special or an inside joke were the small yet huge gestures that lessened the tensions and brought us back to love. Those small kindnesses were priceless. The memories of those kindnesses and that love far outlast the disappointments, frustrations and devastations.

Who wouldn’t be happy with a big hug from Mickey!?!?! July 2014

What are acts of kindness you showed or that were shown to you that were especially memorable? Please share them here as part of the #KindnessChallenge.

2011- The first time we went to Fantasmic!

An Important Book for Caregivers: Home Hospice Navigation

In addition to sharing my Disney-ish reflections on caregiving, grief and beyond, I also want to share resources that can help with caregiving and grief. It will not come as a shock that I happen to agree with Walt that “There is more treasure in books than in all the pirate’s loot on Treasure Island.” I guess I was a little like Goldilocks when it came to reading books about caregiving, grief, and ALS—some were too clinical, some were too spiritual or faith-based, some were too heavy-handed, with so much detail that I ended up feeling confused or defeated. I wanted a concise and accessible how-to resource.  I recently discovered just that, an easy to read, informative, understandable  and engaging book called Home Hospice Navigation: The Caregiver’s Guide by Judith Sands, RN, MSL, BSN, CPHRM, CPHQ, CCM, LHRM, ARM who is a healthcare professional, nurse, recognized authority in the areas of care coordination, quality, risk management, and patient safety.

I read many caregiving books, and receive frequent comments from caregivers with questions, concerns and misconceptions of home hospice. I know that it’s difficult to research things when you’re caregiving, and when you do have the time you don’t always have the energy. However, if the notion of home hospice has crossed your mind, I strongly recommend that you take a look at this informative read and wonderful resource that does, indeed, help you to comfortably approach the navigation of home hospice options. Home Hospice Navigation is written for the caregiver in easy to read, well organized sections, with good advice that is offered as if Ms. Sands is standing next to you anticipating your questions.  First and foremost, it clears up the glaring misperception that home hospice is the equivalent of euthanasia and that someone needs to be close to death to receive home hospice services. Instead, Ms. Sands points out that “hospice should be thought of as living fully as long as possible and helping your loved one to die a peaceful and comfortable death.”  I have to admit, I found it confusing when Ben was put on home hospice. It was the physical therapist from our visiting nurse program who suggested it when Ben needed more help and was nervous about being alone but reluctant to accept that he needed to hire an aide. This woman set in motion a process that allowed Ben to receive helpful care, support and medical supplies. As caregivers, we often neglect our own physical and emotional needs and hospice care services also provided a lot of emotional support to me. Yes, there is a trade-off at times with what is covered by insurance, but home hospice is definitely an option worth exploring. This benefit is covered through Medicare, Medicaid and most commercial insurance policies.

Ms. Sands lets you know what information is applicable across the board and what may be specific to your state or insurance. Throughout the book you will find anecdotes about Ms. Sands’ experience with home hospice with her mom. These stories show the very personal inspiration for this book and make it very relatable for many caregivers. There are references to the important documents that everyone should complete, which are conveniently organized and available through her web site, www.JudithSands.com (the book can also be purchased through her site). Also, you will find suggestions of considerations, conversations that should take place, and a step-by-step, very accessible process for how to begin to engage hospice services and work with medical and related staff.

I wish I had this book when Ben and I were making decisions about his health care.  I highly recommend Home Hospice Navigation: The Caregiver’s Guide to those of you who are daunted by home hospice and do not know where, how or whether to consider it as an option. The book can be purchased in paperback or digital versions through JudithSands.com. Please feel free to contact me with any questions or comments.