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Caregiving and ALS: Recognizing the True Villain

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Walt Disney World, Pirates,Fireworks,ALS,Halloween

At the Pirates and Pals Fireworks Cruise Party with Captain Hook and Mr. Smee. They are probably the only villains we met!

May is ALS Awareness Month, and although ALS is always on my mind, even in the days since I lost Ben, I like to think that all of the Awareness months bring new information, insights and reflections into view. This post is probably a long time coming, but this seems a good time to address new issues and aspects of ALS and caregiving. In many posts I have mentioned that while Ben was fighting his battle against ALS, anger, resentment and profound sadness affected us. I would say that we both believed in the quote from the 2015 live action Cinderella to “have courage and be kind,” but it did not always happen. I have read many comments from caregivers of people with ALS and other illnesses expressing aggravation and devastation from the hurtful things their carees say to them. Likewise, they are upset with themselves for the ugly things they have said to their carees. I have not really delved into this topic, mostly because those conversations with Ben feel very unloving and uncharacteristic of our relationship and what I want to remember, and I don’t want to speak for Ben and potentially compromise his integrity. But, having suffered my own battle wounds as a caregiver, and having questioned my caregiving abilities because of incidents with Ben, I felt that sharing my experience might offer some perspective and consolation. To do this, I believe it’s time to invoke the Disney villains!

It must be said, and reiterated, that it is almost incomprehensibly difficult to need a caregiver, but it is also profoundly difficult, in a different way, to be a caregiver. Although the needs of a caree often must take priority, the challenges both face must be considered.  Ben was diagnosed with ALS a couple of years after my dad was diagnosed and living with cancer. In my mind, there was no question that I would be their caregiver, though I cannot honestly say that I knew exactly what caregiving would look like. After his diagnosis, Ben told me that if I wanted to leave and have a different kind of life, that he would understand. I would never have done that, though many people thought I should, for a variety of reasons. To this day, I do not regret my decision. The only regret I have is that Ben and I did not communicate better. I hope that if this post resonates with any caregivers or carees, that they take to heart how crucial it is to have those uncomfortable and sometimes heart-wrenching conversations and to express yourselves before the ugly emotions and language spew forth, so that you can speak to each other respectfully, tactfully, and lovingly. In the case of ALS, communication itself becomes increasingly impeded, so those opportunities for self-expression and sharing should not be postponed.

Hold your tongue!– Lady Tremaine, Cinderella’s Stepmother, Cinderella (1950)

Ben’s ALS progressed slowly, which was a good thing. However, it allowed us to procrastinate on difficult discussions and decisions about what kind of home health care we would need, how we could organize our lives financially and practically, as well as emotionally, and even where he would live. When these subjects were raised, either by our loved ones or by his medical teams, Ben’s attitude was that these things were going to happen way down the road. I admired his optimism even when I was frustrated. I worried about these things, but I always reasoned that he was dying and if this was his way of processing these things, that I had to follow his lead.

After nearly four years, despite his denial, we hit that bump in the road where Ben’s needs were increasing, and I was struggling to juggle a full-time teaching job while being his full-time caregiver and my dad’s. To a large degree, I felt that Ben’s denial kept him healthier. On the other hand, because he did not concede to his limitations, he did not admit that I had to do much to accommodate him, which was not true, and I held my tongue and seethed rather than express my concerns about how overwhelmed I felt.  Unfortunately, it came out in bad moods that annoyed Ben because he did not understand their source. It was becoming more and more of a battle to juggle caregiving with work, and to feel that I was slipping away from my friends, family and even myself. Frequently, when we were awake much of the night, I went to work exhausted. Sometimes, on those nights, I would cry while I was assisting Ben, which upset both of us. Of course, it was never his fault that he needed assistance. We both knew it was exhaustion but we had no solution.

When there was not an actual incident, I lived with the worry of one. While Ben was able to do some walking, I went to work every day waiting to get my daily text that he was okay and at his desk and I spent the rest of the day hoping that there would not be a problem. There were many times that I had to leave school because he was having a crisis, either falling, stuck on the toilet, or suffering severe anxiety for which he refused medication.

In one conversation about the difficulty I was having with full time work and full time caregiving, he told me that I did not do very much and what I did was half-assed. I think that even he knew this was not true, but it was not easy to hear and it cut me deeply. He asked me to list what I did for him, which I would not do, saying that I should not have to, and I ended the discussion, leaving both of us feeling angry. Clearly it had a strong impact, because I remember it several years later. Better communication about our feelings would likely have helped, even if it could not change our situation. Intellectually, I knew that Ben did greatly value and depend on what I did for him, and he loved me as much as I loved him, but he did not want to admit what was happening to his body, and he took it out on me because I was the closest person to him. He minded his temper more with his daughter because, unlike with me, he admitted that he did not trust that her support was unconditional and he knew that it was measured. There were certainly times that I dropped the ball or was not as patient as I could and should have been. With our own struggles and needs, it became impossible to be objective. We both felt anger, aggravation and helplessness and the reality was that both of our feelings mattered even when we couldn’t meet all of our needs. There was so much love over those years, and it still disturbs me that these memories still hover over me, but it would be dishonest, inaccurate and self-deceptive to ignore them.

Words are important, and Ben got impatient when I was irritated that he did not think he had to say thank you to me. To be fair, sometimes he did, but he had to deem it a worthy occasion. It may be a simple phrase, but he knew that it meant a lot to me, and that I felt that his not saying it was sending me the message that he felt entitled. Rather than argue these things, I withdrew into myself rather than dispute Ben, because, after all, he was dying and had his own inner conflicts. I wrote in my journal and vented to a social worker at the ALS local chapter, to his doctor, and to my friends and family. But, I also felt paralyzed, so nothing changed. I have to say that on so many levels I felt honored to be the person Ben relied on to be his caregiver, but the stress of his worsening condition, lack of acceptance of it, and our reluctance to admit and address our feelings and fears, led to a lot of sadness and resentment.

There were weekends when I simply needed time to myself. TGIF was not something I really looked forward to. Without question, I took care of Ben’s needs- prepared and fed his meals, washed him, transferred him to and from chair and commode, and whatever else needed to be done- but I was sometimes distant. I knew I was aloof and only doing what had to be done, with little conversation or affection.  I stayed by myself in one room and left him in the other to play on his computer or watch television, but I could see and hear him. I knew he waited all week for time with me on the weekend and I felt guilty that I just could not be there emotionally. I knew that I was collapsing and I did not know what to do. Ben did not want to hear it. Staying in a quiet room staring at the television or my laptop was the way I coped. At those times I did wonder if I was a good caregiver. When Ben felt insulted, annoyed or impatient when I was distant, I seriously questioned myself as a caregiver. It’s taken me a long time, and a lot of advice, to reconcile my feelings. I still think about it though, particularly as COVID19 has us all homebound.

In my Disney way, I feel it is necessary to say that there was pixie dust, as Ben and I did find many ways to show each other our love and gratitude. When he did have some private care home health assistance, he sometimes texted me that he had asked his aide to stay an extra hour or two, so I could stay out for a while. He did try to find back-up assistance when there was an event that he knew I really wanted to attend. I kept Ben laughing and smiling, with my Vitamix concoctions, my dramatic presentations of shopping I had done for him, my surprise decorations around the apartment and little gifts, including snowballs after a storm. He knew that I would make the phone calls and write the emails to get him what he needed. There were so many loving gestures that showed the real Ben and Abby, but they were sometimes overshadowed by darker occasions that resulted from our Jaberwocky that was ALS.

Get to the part where I lose my temper! –Red Queen, Alice in Wonderland

One of the physical realities we faced was that I suffered a broken shoulder in 2012 and my back issues were amplified a few months later after a car accident with my dad (he was fine, thank goodness). Fortunately, Ben was able to walk on his own at that point and his ALS had not progressed drastically. However, even a year or two afterwards, when he did need more assistance, transferring Ben frequently was physically difficult, compounded by the emotional toll on both of us. On many weekends, Ben kindly stayed in the bedroom so I did not have to yank his chair across the apartment several times. But, there were times that it was unavoidable. Once, after getting annoyed with me, he asked me to transfer him back to his chair, minutes after asking me to put him into the bed. I felt helpless and irritated, and I asked him why he had to transfer so soon and his response was, “so I can make you as miserable as you make me.” This was one of the very few times that I lost my temper and I argued with him that I gave him 1000 percent and that he was ungrateful. I left him in bed for about ten minutes to gather my strength- physical and emotional- despite his protests.

During some of these kinds of moments, Ben said that if he didn’t have a life, why should I have one? There is no answer to that other than that’s the way things turned out and life was unfair to him. It did break my heart and it still does. It also made me question if I did have a right to want to see my friends sometimes or do some of the things I enjoyed, even if it was just a casual stroll across town after school. I was terrified and devastated by what was happening to him and to our life and I felt like I was not doing a good job of finding a balance of work, caregiving and life.

The trying situations were not always with Ben. There were medical professionals with whom we did not have a positive connection. Some were judgmental and not helpful. One social worker provided misinformation and did not help Ben with financial advice and we ended up researching and completing paperwork on our own, losing a year of benefits. In the hospital, we were fortunate to have many wonderful health care professionals. However, the goal was to move Ben on and out, and I learned that as an advocate, I was easily able to overcome my shyness and lack of confidence to communicate on Ben’s behalf. I aligned myself with the most supportive and helpful team members, and his incredibly patient and wonderful doctor, and enabled Ben to navigate his circumstances on his own terms.

I was also the liaison to Ben’s family, particularly when he was in the hospital. Throughout his illness, Ben was often disappointed by their empty promises, which left me exasperated. Few questions were asked but he and I were often judged despite their lack of actual knowledge of his condition, or their involvement, which was infuriating. Intellectually, I knew that it would not help the situation to lose my temper, but I could not refrain on certain occasions, like when one daughter criticized me for taking fifteen minutes to respond to a text when, in fact, I was talking to the medical staff in the hospital, and it had taken her over a week to even reply to a text telling the family that Ben had pneumonia. It helped me to set the bar very low in terms of expectations for logic as well as family support and involvement. A sense of humor also should never be underestimated. The balance in that came with handling their demands and expectations of me. I tried to establish a norm where I relayed particulars but kept my distance, which allowed me to keep them informed without compromising my feelings and enabling a lot of drama. I put aside my own resentments and was able to have meaningful conversations and a brief close connection to one of his daughters, as well. Believe me, in my fantasies and when venting, I was a veritable Red Queen!

“Life’s full of tough choices, isn’t it?” – Ursula, The Little Mermaid

Communication and delivery style are so vitally important, especially when tensions are high. On several occasions, Ben said that I had no choice but to take care of him. I remember that one day, I very quietly told him that I did have a choice. I was with him because I chose to be with him because I loved him, but I could also choose not to stay with him. His first reaction was anger, and then it seemed like shock that I would say such a thing. I imagine it scared him to hear that. But, Ben also knew me. He knew I would never leave him. I knew I would never leave him.

I was furious when, without any discussion, Ben told me that he was letting go his home health aide as soon as my school year ended and that I would be his 24/7 caregiver for the summer in addition to 3 hours each weekday of home health care provided by hospice. However, he only allowed them to sponge bathe him and feed him, preferring my “cooking” and with the knowledge that they would not transfer him to and from beds, chairs and the commode. I did ask him why he made that decision without speaking to me about it and he said I had no choice because he was concerned about finances. Ben thought I should not question his needs or his plans, and indeed, he needed 24/7 assistance. Although he did not admit it, I’m sure that there was an element of fear that I would refuse to take on this monumental task, so he created a scenario where there was no opportunity for debate, knowing that I would never leave him. The truth is that I really did not have a choice but to take care of him, not because he said so, but because despite these ugly moments, I was connected by my heartstrings- we loved each other and I would never have abandoned him. But, no one wants to feel taken for granted or stuck, and that was exactly how I felt. I felt very close to a breaking point at that time, but I did not feel that I had any options. It was not a safe or good physical environment, but we were stuck in the apartment. We plodded through these times recognizing, as the song in Cinderella says, “so this is love.” Unfortunately, when there was a conflict, our communication broke down.

We never had a chance to resolve the issue of my being his 24/7 caregiver because he had a respiratory crisis and ended up in the hospital just a few days after the school year ended. When Ben spent his last weeks in the hospital, despite a staff of people to tend to him, I remained at his side for at least 14 hours a day and frequently overnight. That was not a tough choice- it was exactly where I wanted and needed to be. I was the person he depended on. I wanted and needed to be that person. The tensions we had experienced largely disappeared. As he neared the end, it was all about love and how much we appreciated each other.

After Ben died, I heard kind things from so many people about what a good caregiver and how brave I was. I didn’t see it. More than that, I struggled with whether I really was a good caregiver if Ben didn’t think so, as he’d said in these worst moments. I wrote in a previous post about losing my identity, and this was one way it surfaced. I have come to realize that there was a Ben and Abby before ALS and a Ben and Abby after ALS, and in some ways they were not the same. Our relationship shifted from husband to wife to patient and caregiver. There were fears, physical and emotional pains, and challenging circumstances that brought out the good but also the bad sides of both of us.

“You poor, simple fools. Thinking you could defeat me. Me! The mistress of all evil!” Maleficent, Sleeping Beauty

As I reflect on the experiences and the related feelings and emotions, I see that it is so important to remember not to focus on the negative people and personalities, or even on the individual events. Stress, caregiving, and impending death are all things that cause tension and impact on our interpersonal relations. Vilifying people only deviated from the truly and painfully unsolvable problem.There was only one true villain in our circumstance, and that was ALS. While we could not defeat the disease, we could defeat the ugly feelings. Despite the struggles, and though we could not always acknowledge it while immersed in the experience, Ben’s and my relationship and love actually strengthened throughout our ALS journey. I choose to embrace the love that I was fortunate to receive and to give, without forgetting the realities of the big picture within the trajectory of our experience with ALS.

If you are a caregiver struggling with relationship issues with your caree, please remember that it’s been more than four years since Ben left this world, so I’ve had time to gain perspective.  It is not as simple when you are in the midst of the situation, but please try to remember what the villain really is and open the lines of communication, filling them with love, even if that includes expressions of frustration.  Cut each other slack- it’s okay and to be expected that nobody is always going to be at his or her best, even in the best of times.  It has taken me a while to get to a point where my strongest memories are the beautiful times we had before ALS and the beautiful aspects of caregiving when the most powerful feeling was profound and boundless love.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, It's a Small World

2011- It’s a Small World allows a wheelchair to board the boat, and since that was so easy (and, ok, there are not long lines) we road it frequently! YAY! I choose to remember the love!

What Would Pooh’s Friend Rabbit Do As A Caregiver During COVID19?

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Pooh gets stuck in Rabbit’s home entrance, so Rabbit tries to work around the problem! From Walt Disney Production’s “The Many Adventures of Winnie the Pooh” (1977)

With Easter here, I guess bunnies are on my mind. Since I have been thinking about how the current COVID19 pandemic would have affected all of Ben’s and my routines and rituals with regard to caregiving and grief, I am going to put the spotlight on Winnie the Pooh’s buddy, Rabbit. Rabbit is the friend who has to have everything just right, who gets flustered when anything goes wrong or things are not in their proper order. He sees himself as the caregiver of his friends Pooh, Eeyore, Tigger and Piglet. Chances are, as a caregiver, he would put excellent routines in place. He would organize schedules and supplies with impeccable care. He would also be sent into a tizzy at the slightest change in plans but would try to come up with a work-around. Crises like COVID19 might send him into an utter tailspin. I imagine that the fear of contamination and spreading of the coronavirus would have put Rabbit in lockdown mode before it was ever suggested or required. Rabbit would be the one to try to solve the problem, possibly more to maintain the order he needs in his world than to show compassion. I think that he might make me nervous if he was my caregiver. And, as caregivers know, trust and compassion are key. Although it still feels strange to state it, I am relieved that Ben and my dad do not have this worry. They are free of these constraints.

I think of the strong bonds of friendship that exist between the 100 Acre Woods friends. They understand and accept each other for their strengths and weaknesses. I imagine the 100 Acre Woods as a sort of sanctuary, free of the coronavirus threat. Even Christopher Robin would have been able to visit with his friends in this fictional, blissful world. Still, Rabbit would be the friend who worried and obsessed over the safety and health of everyone.

What would Rabbit and I do to manage caregiving for Ben during this pandemic? Although chaos became my normal during my years of caregiving for my dad and Ben, Rabbit probably would have valued that establishing routines was our starting point. Since I was working while Ben was at home, we had several routines in place for his safety and ease of getting through the day. If we were coping with ALS and the pandemic, Rabbit would likely be furious with my inability to keep things neat, but my priority was always to accommodate all kinds of supplies and move things wherever they fit to make other things accessible for Ben. All of our routines would have to be scrapped as we focused on staying safe and keeping COVID19 away from Ben. This would have been difficult for Rabbit, but my coping strategy was always just to plow  through these conditions and not consider the physical and emotional messiness (which does not mean that they did not take a toll on me). I imagine that we would both be so nervous about going outside to run errands, which would have changed our shopping routines and methods for getting supplies. We would not have allowed anyone inside and our interactions with others- even routine visits from health care workers such as speech and physical therapists would be nerve-wracking, if they happened at all. I imagine that we could not have any paid home healthcare workers traveling to and from our home, which would have made our caregiving tasks more strenuous. Rabbit and I might clash in the way we expressed ourselves, because I tried to see the humor in things, if for no other reason than to make Ben laugh, but humor was never Rabbit’s strong suit. In a small space, we might have to put our personalities aside and focus on the caregiving routines. Our bond would be forged of a shared devotion to Ben and desire to keep all of us safe and uninfected.

This holiday time, as it intersects with the social distancing standards, leads me to reflect on how illness affects connections among family and friends, where it’s not the 100 Acre Woods. I used to try to create a festive environment for Ben and me when Ben was homebound. At that time, there were no widely used computer programs for connecting online, and that’s a wonderful advancement and use of technology. I remember the sense of isolation that Ben and I often felt, not just at holidays. That isolation was not imposed. It happened as the ALS progressed and Ben’s speech and dexterity in typing diminished. As communication became less easy, some family and friends drifted away. Some people simply did not know what to say so they lost touch with us. Some people were more superficial in their friendships, not really wanting to hear about Ben’s life challenges. We had not created routines for keeping in touch on a regular basis. Maybe that should have been done. On the other hand, maybe that would have seemed too forced. I do think about the people I had thought of as close friends who eventually only offered empty comments on Facebook posts about how we were always in their thoughts or how they loved us, or that they were sorry for being bad friends (exactly how did they expect me to reply?). It may not have been social distancing in the COVID19 way, but the distances grew to the point where the friendships now barely, if at all, exist. I prefer to recognize that I am so fortunate that my closest friends were always there for both of us.

Although my sense of order and neatness would have infuriated Rabbit despite my ability to organize and maintain routines, I realize that rituals are extremely important to me. I see people participate in Passover seders and talk of watching Easter services online and having virtual celebrations with family and, although I choose not to celebrate these religious rituals, I feel alone. Still, I find great peace in my rituals and traditions when it comes to honoring Ben and the things that were unique to our relationship. For example, every day I listen to my Ben playlist of special songs, and I watch his favorite Disney and Pixar films on important dates like his birthday. I keep some items placed in our home the way he liked to see them. Also, without much family connection, my friends have become a chosen family. I have created rituals like baking cookies and making Valentine cards to show my love, and those are very important to me. These routines honor deep connections that transcend sharing physical space together. No matter where life takes me, though probably not as structured as Rabbit would like, these routines and rituals give me a sense of security in the present and the knowledge that I bring the love from the past along as I move forward.

In whatever ways you celebrate and with the routines and rituals that give you peace and comfort, particularly at this stressful and challenging time, I wish you a safe, healthy and happy springtime.

ALS, Walt Disney World, Pooh, Rabbit,Caregiving

Halloween 2012 at Walt Disney World. We never met Rabbit (there was probably too much frolicking), but had fun with his 100 Acre Woods buddies.

It’s National Respect Your Cat Day- For This Caregiver That’s Every Day

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Visiting hours for Disney during one of her hospital stays.

Today is National Respect Your Cat Day. As my grandma used to say about Mother’s Day, in my cat Tinker Bell’s opinion, and mine, EVERY day should be a day to respect your cat! I certainly respect, and love beyond measure, Tinker Bell, as I did Disney, and my first cat, Tiffany. My cats have celebrated my joys and helped me through my most difficult times. I am grateful for any opportunity to honor them. Now, as I “shelter in place” here in NYC during the coronavirus pandemic, I am even more grateful for the company of Tinker Bell and reflective on the significance of pets in my life.

I grew up with dogs- Schnauzers, to be specific- and would have called myself a “dog person,” but when I met Tiffany, my world grew and now I am also a “cat person.” Actually, I am an overall animal lover.

Tiffany, my first cat, was adopted by the organization where I worked because she was going to be brought to a shelter where she would have been euthanized in a given period of time. The managers of the organization were animal lovers, and they also knew that I was grieving the loss of my family’s Schnauzer, Dulcie. Tiffany chose me as her human from the moment she arrived at our office. I was allergic to her, and people had to help me put eyedrops in my eyes, but I took to her as she did to me. What can I say? I got better at eyedrops and Benadryl has become a staple in my cabinet. Tiffany was my assistant at all meetings, and she complained to me when anyone used “her” conference room. If I had been out of the office in the morning, she put on quite a show pretending that she hadn’t eaten, as staff members told me of the treats she had enjoyed. In the summer, when we had Fridays off, I could not imagine leaving her alone for three days. After all, I only knew of dogs and that they could never be left alone for that long. So, every Friday, I went to the office with a yogurt that I shared with Tiffany- she preferred peach and blueberry. I took Tiffany home for holiday weekends, too. As a kind of joke, I put on the movie Born Free and sang the song, inviting her to sing along. Who knew that she would?! And, that whenever she was hiding, if I sang the song, she would come out to me!

When I did get a new job, it was agreed that Tiffany and I belonged to each other. In Tiffany’s case, I really was the only person she cared about. She was a feisty and funny girl and I used to say that she spent hours thinking of ways to annoy Ben. She was really good at it, hitting him if I wasn’t looking, staring him down until he moved so she could sit next to me. Ben would proudly bring home shrimp for her, but she would only accept it from me. And, my favorite event was one day that I repeatedly overheard Ben arguing for her to stop. I went into the room and Ben complained that she kept closing the door to the entertainment center each time he opened it. I looked at her and she walked away with her confident strut and dismissiveness. Of course, she didn’t get in trouble. I thought it was funny.

Tiffany loved our Disney toys!

Ultimately, Tiffany got mammary cancer. After intensive surgery, within three months, it was back and had spread. I had to say goodbye to her. Ben accompanied me to the vet’s office. Despite her antics, Ben never had a close relationship with a pet until Tiffany, and he loved her very much. On our way home after saying goodbye, Ben broke down. We comforted each other through that grief.

I knew that I needed a new baby, so we welcomed Disney. Ben had a bit of a hard time fully embracing Disney because he missed Tiffany so much. However, much to my delight, Disney was the sweetest and  cuddliest cat I ever met, so she won him over pretty quickly. I probably compared her to Tiffany a little too much, but since Tiffany was not a cuddly girl, I did enjoy that Disney loved to be held and hugged. She helped me cope with the loss of my Tiffany. Little did I know that Disney would also help me to cope with the loss of Ben. Also, that she would help me to realize how important caregiving is in my life.

Disney was Miss February in a Bideawee Calendar!

After Ben was diagnosed with ALS, Disney witnessed and experienced Ben’s battle along with me. When he became homebound, she kept him company. She accommodated his desire to pet her by jumping on the arm of the sofa or on the bed. It was easy to see her concern as he had more difficulty navigating the space. Unlike many cats who are more territorial, Disney seemed to know that there was a reason for all of the changes in our apartment. Furniture was moved, things were stacked, her favorite corners were no longer available, but Disney handled it so graciously. She was there for me when I needed her, too. She sensed if I was crying or frustrated and was always at my side at those moments.

When Ben was in the hospice unit at Mount Sinai Medical Center, I was allowed to bring Disney to visit him. She was on thyroid meds and suffering from arthritis, so at first, she was not comfortable on the bed with him. She sat on a chair and watched him intently. When he asked me to bring her closer so he could stroke her, I put her on my lap and she pulled herself up on the bed, curling up on his chest. He asked me to put his hand on her, she turned on her side, and they both closed their eyes. I truly believe that they said their goodbyes in this moment.

Disney watched Ben throughout their visit in the hospice, even when he slept, as pictured here.

Disney did not realize that she was the comfort that Ben and I needed after we lost Tiffany. She also became the comfort I needed after the loss of Ben. The apartment was so lonely and there was no more structure to my day without my hours spent at the hospital. I don’t know what I would have done without Disney’s sweet face and presence.

Unfortunately, only a couple of weeks after I lost Ben, I noticed some physical problems with Disney, and I took her to the vet. It tuned out that she had diabetes and I had to inject her with insulin twice a day. Just as I had to do as Ben battled ALS, I had to put aside my squeamish nature. Once again, I was a caregiver, this time for Disney. We had several emergency visits to the vet, including one in the middle of the night, when I genuinely thought I would lose her. Terrifying as it was, it was this incident that showed me that I truly am a caregiver at heart. (You can read a little more about my experiences with Disney by clicking here) It is my strength and my fulfillment despite the challenges and sadness. Administering fluids was the next phase of Disney’s illness and although it took me a while to learn how to do it without pricking her, she handled it so well. I promised Disney and myself that I would never keep her here if she was not having a good quality of life. Eventually, I was by her side as I let her go. It was particularly difficult to let go of Disney because she was my closest connection to Ben. She may not have been able to articulate her feelings, but she saw, felt and responded to his ALS struggle and its effects on our family.

I was very excited to tell Marie that she was Disney’s favorite actress!

I knew that I could not be alone for long. Within a couple of weeks, I welcomed a new little love. Tiffany and Disney were more than eight years old when I met them, but this little girl was only two. She was half the size of them, which, in my way of thinking, was fairy-sized, so I named her Tinker Bell. She has a lot of kitten in her and it delights me to watch her run around and play with her toys. Over the past year that she’s been here, she has become much more affectionate and she is very chatty. She still does not like to be held but insists on sleeping pressed up against me. Her greatest joy is knowing that I am staying home with her, so the current mandate to stay at home is a dream come true for her. I’m glad she doesn’t understand the news. Still, I can talk to her about my worries and enjoy having her companionship. I know she thinks she’s training me well, but I love making her happy.

On Tinker Bell’s “Gotcha Day,” February 18, 2019 at NYC’s Meow Parlour

People who don’t love pets do not understand that my pets are family.  Today is Respect Your Cat day, and I am happy to recount these many reasons that I respect, and treasure, my cats and all that they have brought to my life.

At home on the sofa with Mommy is Tinker Bell’s upside to the coronavirus pandemic! She loves her friends Sully, Bambi, Marie and Pooh, too!

Through A Caregiver’s Lens: Coronavirus, Feeling Inside Out and Listening to Buzz Lightyear

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I’ve said before that being a caregiver changed me. I have come to realize that I look at life through the lens of caregiving and, also of ALS. The Disney Pixar film Inside Out shows us that life can’t all be Joy, and that’s ok. There is a scene in Inside Out in which Anger, Fear and Disgust try to be Joy, since Joy is unavailable. They couldn’t pull it off. I find myself thinking of all the times that I forced myself to be the cheerleader to bring laughter, joy and a sense of confidence to Ben. I could spin moments as joyful and funny or silly. I rarely shared with him my fear and frustration. A recent experience set me in a bit of a downward spiral that has been further escalated by the coronavirus pandemic. Many of the realities of caregiving and ALS, and the less positive memories, keep surfacing. I can’t mask my emotions for myself as I did for Ben. I can only try to make sense of them.

It started just before theater events were cancelled here in NYC, when I attended a concert celebrating the music of Sheldon Harnick, lyricist of one of my favorite shows, “She Loves Me,” and also of “Fiddler on the Roof” and many others. I was excited about the concert because Liz Callaway, one of my very favorite Broadway singers, was performing with Karen Ziemba, whom I also like. I didn’t even realize that Mr. Harnick would be there. He is an adorable man of around 95 years who was having so much fun singing his songs. What I didn’t know was that Rebecca Luker was also one of the performers. Rebecca Luker recently announced her battle with ALS. When I saw her name on the program I was immediately unnerved. I don’t see many people with ALS and it is difficult for me. At the same time, I was actually relieved to see that she is still able to perform. I thought about leaving, but decided to stay. I guess that I was curious about how she was doing and how I would handle it.

When Rebecca entered the stage in her electric wheelchair with Karen Ziemba, I did cry, but her big smile showed that same bravery that I admired so much in Ben. I cried as I drew the parallels and distinctions between her abilities and Ben’s, since the trajectory of the disease varies from person to person. I watched everything she did, noting that she was able to hold a bottle and drink water and to use her arms and hands to put on and take off her glasses. She had the strength to hold a book that was a prop. She didn’t have any the bouts of involuntary laughter or tears that plagued Ben. Her voice was strong. When she sang her first solo, I saw Karen Ziemba get emotional and wipe away some tears as she squeezed Rebecca Luker’s arm. I tend to reflect a lot on the emotional aspects of caregiving and the battle with ALS. This bought back physical  details of the disease and how I watched everything in Ben’s world change. We never knew what the next day would bring.

After the show, I watched the women tend to their friend. I was grateful that her friends were there. I remembered how my friends helped me, but also, how alone Ben and I often felt. I loved hearing the music at the concert but felt so distracted by memories of the realities of living with ALS. I wondered about what Rebecca Luker’s daily life is and how her family is doing. I cried for what I knew would befall Rebecca Luker. It was powerful to have this experience at a musical concert, though it has left me shaken. Though he was not a performer, music was so important to Ben and played a powerful role throughout his struggle with ALS. He loved to play around with his instruments and missed that as he lost his dexterity. He always found comfort in music and I am glad that it surrounded him through his last minutes. I was so happy that Rebecca Luker still has her voice and her music. I hope that she is able to find comfort in performing for a long time and that all people with ALS are able to enjoy a source of comfort.

Within just a few days of the concert, the coronavirus became more of a severe threat and it began to affect daily life. My reaction was still grounded in caregiving and how I would have handled it if Ben was here and I was his caregiver. I thought about how I started consistently getting flu shots only after Ben was diagnosed with ALS. My doctor said that I should get one to protect Ben. It didn’t protect me from the bouts of bronchitis and pneumonia that had us on edge. Thankfully, Ben never caught those from me, but the idea of his contracting anything respiratory was dangerous and terrifying.

I was so angry that it took so long for NYC to decide to close the schools because I reverted to how I would have felt if I was Ben’s caregiver. I would have been living in a panic about bringing germs home to Ben. Coronavirus would likely have killed Ben. I talked to my students about my experience when they expressed the concern about coming home from school to elderly grandparents or immunocompromised family members. They needed compassion and empathy and they could see that I completely understood their worries and that teachers are human. If this had happened when Ben was here and the schools had stayed open, I probably would have put my job on the line and insisted on staying at home with him. I was always worried about my job because I took so many days off to care for my dad and Ben. At one point I did take family leave. Now, as I relive all that anxiety, I think of the caregivers who are making these tough decisions. I can say from experience that there is such a need to support caregivers, particularly as more people are turning to family caregivers due to the lack of coverage by health insurance. The coronavirus brings additional challenges though, in that caregivers who travel to the homes of their carees potentially bring the virus with them. I am having difficulty distancing myself from these concerns. I want to help. Maybe sharing these thoughts will be enlightening.

Although I am not a caregiver and this is no longer a direct problem for me, I have stepped back into my caregiving mindset. My emotions have turned me inside out because of all of my memories. I cannot stop thinking about how nervous and upset I would be about taking the subway and going to school in the midst of the pandemic. I relate to the frenzy of paid caregivers not being able to work because they have to take care of their own children in light of school closings. I think of the many times that I had to stay home from work because a caregiver was unable to work, or because Ben was having so much anxiety that he wanted me to be home. The new social distancing would have kept me from even thinking that anyone could step in and help. Caregivers cannot socially distance themselves from carees. It would have had us worried about interactions with anybody else. I learned not to count on visitors to help, but it would have been terrifying to know that calling anyone for assistance would mean potentially exposing Ben to the virus. The importance of a hug would be tempered by the need to limit contact. Although more than four years have passed since I have had those caregiving responsibilities, I find that every action I take is through the lens of a caregiver and becomes a reflection on how it would have affected Ben. I continue to feel that stress.

I have been trying to step outside for a little walk every day, to get some exercise and fresh air and to feel connected to humanity. I cannot get beyond thoughts of what being outside meant when Ben was battling ALS. We lived up a flight of stairs and once he couldn’t walk, he could not go outside. I went to work during the week but ran home after school to tend to Ben, except for the rare occasion that his daughter visited with him and I could have a bit of respite. I had no idea what was going on in my own neighborhood. Ben looked forward to weekends because I was home with him around the clock. Despite the love and devotion, it was hard for me to essentially be working seven days a week. I can’t deny that I did want, and need, time for myself. In our difficult moments, I felt resentful and frustrated, and guilty about those feelings. When I felt captive, I realized that Ben was always captive, at home, but worse, in his body. On the occasions that I went out to pick up groceries or supplies that Ben requested, it was always very briefly. One of the advantages of being in NYC is that everything is just a couple of blocks away. However, even a short outing came with the worry that Ben was alone, though I never left if he didn’t feel confident. Although I did at times really need those outings for my peace of mind, acknowledging that to myself did come with guilt. After all, Ben couldn’t get outside and he just wanted my presence. Now, as I go for my walks, I find my mind drifting to thoughts of how I would be worried about my exposure to the coronavirus and bringing it home to him. I know that these are the things that all caregivers must tackle.

I do find myself feeling relieved that Ben, and my dad, are not here during this pandemic. When my dad was in the hospice, I probably would not have been allowed to visit him, or our visits would have been severely limited. That would have been traumatic for both of us. However, traveling by train to see him would have also brought the worry that I would infect him and/or Ben. Now, my dad and Ben have no worries. Technically, I don’t even have those worries. I should take comfort in that. Instead, I feel a combination of guilt and unease. Current events fill me with anxiety as I conjure memories of the difficulties of caregiving and life with ALS. I cannot seem to shed the caregiving instincts and I don’t seem to want to. But, without the caregiving responsibilities, I do not know how to direct my energy.

Yes, caregiving has changed me. I believe that it changes everyone. Some people cannot get far enough away from the experience, and I can understand it. In my case, caregiving is embedded in the way I define myself. I even obtained my certification as a caregiving consultant. This was less a professional goal than a means to acquire skills to use to support caregivers in any kind of volunteer capacity, and to bolster my knowledge in my blog posts and interactions with readers. I want to care for the caregivers. A while back, I created a webinar about how to keep your identity when you’re a caregiver. I’m posting a link to that webinar here (https://www.caregiving.com/caregiving-webinars/webinar-finding-inspiration-and-protecting-your-identity-during-caregiving/). In this particularly trying time and the critical need to practice social distancing, I will take advantage of technology and post resources that caregivers can use at home to hopefully alleviate some of the tension. I’m very concerned about children who are also stuck at home, in some cases working their way through online learning while surrounded by caregiving and caregiving responsibilities, so I will post some resources for them, too. Selfishly, I also hope that this helps me, too.

I welcome your comments, questions and requests. I thank and respect all caregivers. Ben particularly loved Buzz Lightyear, so I think it’s appropriate to quote him here: “The important thing is that we stick together.”

I wish everyone peace, health and safety during this pandemic.

On International Women’s Day- Thoughts of My Mom, Grandma and all Caregivers

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Grandma and I around 1990

My Grandma’s birthday was on March 5. She’s often on my mind, but the end of February was the anniversary of her passing, and along with the other sad milestone dates in February, it’s just a melancholy time. The good thing has been the overlap with the Jewish holiday Purim, since she taught me to make my great-grandmother’s humentashen recipe, and I make them every year in her honor. Today is also International Women’s Day. Grandma would surely scoff at this kind of occasion, as she did with Mother’s Day. She would say that women should be honored every day. Still, as I baked my great-grandma’s recipe for cookies to bring to a friend this weekend, and have been distributing humentashen among my friends, I feel deeply connected to Grandma. She would be so delighted that my creations are so well received! Since we shared a creative flair, she would love the way I have come to decorate cookies.

Making humentashen is a tradition that started a long time ago!

The fact that today is International Women’s Day led me to think about the tremendous influence my grandma and my mom have had on my life. I realize that my grandma and my mom taught me to be a caregiver. They instilled in me a sense of loyalty and desire to help my loved ones, although I do think it is also in my nature. Of course, if you read this blog, you know that my dad also played an incredibly important role in my life. Since I was his caregiver, he was in many ways a beneficiary of all that he and these wonderful women taught me.

The truth is that I was a mommy’s girl, a daddy’s girl and a grandma’s girl. That has stayed with me. In more recent years, there have been some wonderful grandmas in Disney films, which always touches my heart. Julie Andrews as a grandma and a Queen in The Princess Diaries was a treat (and great casting, in my opinion) and I related so much to her relationship with Princess Amelia (played by Anne Hathaway). I watched The Princess Dairies and the sequel this weekend. While my grandma was not as sugar-coated as Julie Andrews, she had such an elegance. Most important was that she truly knew me, and although she had her own ideas of how she would have wanted my life to go (think princess meets prince, and Jewish) but she also knew that I danced to my own beat. I was one of a very small circle whom Grandma loved unconditionally.

Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.

At one point in The Princess Diaries, Julie Andrews tells her granddaughter, “I have faith in you.” That conversation made me cry. That is the crux of my relationship with my grandmother. She had faith in me. Even though we did not always agree, and I struggled with feeling that I had two mothers when one was sufficient, I knew that Grandma had faith in me. She believed in me in a way that I still don’t believe in myself. I have lost the people closest to me who gave me that feeling. I miss it, even though, despite their faith, I have always lacked confidence. (as I’m typing I’m hearing in my head Julie singing “I Have Confidence” from The Sound of Music.

When Grandma was ill, although she had caregivers, I was the person she trusted. No matter what others did, my presence was the one she acknowledged. I learned the supreme value of the care in caregiving. Although I wish I did not need to call upon those skills to be the caregiver of my dad during his struggle with cancer, and Ben during his battle with ALS, I was grateful for the women who helped me to develop those skills. I watched my mom and Grandma take care of not only our immediate family, but also my great-aunts and great-uncles. My mom was the most selfless person I ever knew. Grandma commanded more attention, but she was fiercely loyal to her family and to ensuring that we were there for each other and for her. After she died, our family unraveled. I wish that my mom and Grandma had shown me more self-care skills because even now, six years after my dad died and almost five since Ben has been gone, I am not very adept at caring for and prioritizing myself. I have no regrets about what I did as a caregiver, and I am at my core someone who thrives on caring for others, but I do find myself probably unnecessarily overwhelmed at times because I get caught up in small tasks that are helpful to others and rewarding for me, but I feel lost as I think about my life strategy or plan. Still, I think that the good that they taught me outweighs the downsides.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

When Ben was losing his strength but persisting in his brave struggle to walk, he did sometimes fall. There were occasions when I would catch him just in time and he called me his Wonder Woman. He even got me a Wonder Woman t-shirt. Given how much of a klutz I am, it was kind of funny how proud I was of that shirt. I do believe that I learned about my inner strength when I had to care for my dad and Ben. But, the women in my life helped me to nurture those skills from the time I was a child. Caregiving let me discover and utilize them.

So, on this International Women’s Day, I honor and thank my mom and Grandma. I honor all caregivers, who are Wonder Women for exemplifying the powerful meaning of caregiving. And, I honor Julie Andrews, because she’s Mary Poppins, and that’s enough!

 

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