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Five Years- Missing My Dad

Today marks 5 years since my dad, Jacob, left this world. People might think this strange, but I still think about him every single day, remembering his humor, his advice, his kindness and his history lessons. I think about how upset he would be about the state of our country and its leadership, or lack thereof. He was a proud Marine, and a real patriot. He also loved history, particularly WW2, and he would definitely be reminding me that history does indeed repeat itself.

This is a difficult week because my dad died just two days before his birthday. I can’t help but relive the time he spent at the hospital and at the VA Hospice. I remember people from the staff telling me that I was my dad’s world. I did know that, and I am grateful that we took every opportunity to let each other know how much we loved each other way before he became ill. There were no things left unsaid. I am grateful to have had such a close relationship with him. I suppose the sharp pangs of grief and waves of sadness that permeate these days are testament to the love we had for each other. I like to think about it that way.

Added to this year’s sadness is that I lost my sweet cat, Disney, just a few days ago, on February 7. I haven’t been able to commit that experience to writing yet, but I will say that she was a very brave, loving and lovable little girl. Her legs gave out and she developed a respiratory infection. She was my last connection to Ben and she endeared herself to my dad, too. I like to think that she is walking comfortably with my dad and Ben. But, I am terribly lonely.

There are so many times that I want to call my dad, to share a story, ask for his advice, hear him laugh. I still talk to him. Somehow, I know that he hears me, because sometimes he guides me to the answers.

I wrote notes about my relationship with my dad for the Rabbi to present at his funeral. It has become my tradition to revisit those notes and I like to share them to let people know a little bit about him. Daddy would have said that he did not want any attention, but he deserves it.

My dad was a one-of-a-kind. He was so funny, so kind, so generous, but he liked you to think he was Archie Bunker. I don’t think he ever knew or believed how loved he was.

He was such a proud Marine. He wore his USMC cap so proudly and loved to run into other veterans and share stories. But I was his Private Benjamin. The first time I drove him to the VA out in Northport he just shook his head when I clapped and waved as the guard at the gate saluted us when I flashed Daddy’s VA card. Daddy saluted, shook his head and laughed.  Although he was not an observant Jew, his Marine Corps experience, where he was one of 3 Jews, gave him a sense of pride in his religion and he did not tolerate any discrimination, gaining the nickname of “that crazy Jew” because he would fight anyone who even looked like they were going to say anything derogatory. He trained down south during the days of segregation, and he remembered with sadness and contempt the way he was not allowed to sit on the bus with his African American USMC buddies and how disgusted he was by those attitudes because it was so different than up here.

He lived and breathed dogs but really loved all animals. When I was a little girl we used to read the Dog Breed book all the time. I knew every breed and I used to say that I couldn’t be Daddy’s daughter if I could not identify every kind of dog!  But, he took great pride in his dogs and Schnauzers were our breed. The whole neighborhood knew my dad as Dulcie’s dad. And we all lived by the motto of “love me love my dog.” He was delighted when a group of kids told their sister, who was afraid of Dulcie and making a bit of a scene, to “go inside if you don’t want to play with Dulcie” instead of telling Dulcie to go away. When he was selling our house, a real estate agent brashly told him to put the dog outside. He told her she could stand outside but the dog lived there. She left and never came back. My dad was fine with that! He used to leave messages for my cat when he knew she was alone and let her know that it was a grave injustice that her mommy left her alone.

He was so proud of me and excited that in 2010 I finally was able to launch my dream pet souvenir business and he loved helping me with ideas and business advice. Just last weekend Ben put pictures from a recent dog event I was asked to participate in on his iPad so I could show them to my dad. He loved to look at the pictures and was interested so in my life that he even knew my doggie friends by name.

He had such a good sense of humor and was also a prankster. He got such a kick out of calling companies to review their products or ask questions and having them send him coupons.  Once he called me laughing so hard about his call to Uncle Ben’s Rice. He drove the poor girl crazy asking about the measurements, explaining that his mother in law had always cooked for him but now he was on his own. She asked him to hold on and he heard her say, “I don’t know if this guy is sorry that his mother-in-law died, but I sure am!”

He liked teasing my grandmother, sometimes by pretending to sneak into the kitchen to steal her freshly made matzah balls, to the point where she started counting them! To this day when I bake the cookies and hamentashen she taught me to make, I count the number of each shape and/or flavor!

He loved to laugh and to make people laugh. His facial expressions were priceless. His humor made stressful situations tolerable. I remember giving him books on Jewish humor and how he would call me to read some of the jokes, laughing so hard with his cutest laugh. He called me when he was watching our favorite comedies to recount a scene as he was watching it, and his laughter was so contagious that it always made laugh. Some of our favorite quotes came from Mel Brooks’ “The History of the World: Part 1,” “Tootsie,” “Guess Who’s Coming to Dinner” and “Hope and Glory.”

So hard to get him to pose seriously!

My dad loved history and military aviation. He knew so much about WW2. It was a challenge to find books about things he didn’t know, but he loved to read. I used to call him from Barnes and Noble and read the summaries of the new arrivals to see what he responded to. When there was someone or something that he didn’t know well, I knew I had a winner! Ben and I used to find documentaries for him and Ben would convert them to DVDs. He loved seeing footage he had never seen, and it wasn’t easy to find it!!!  And we had many, many discussions about history.

As much as he loved gadgets, he had no patience. While he screamed about the bad instructions, I constructed tv stands and bookshelves. FIOS drove him crazy. I got many frantic phone calls when he could not get the tv to work. Ben and I downloaded manuals with the remote layouts so we could walk him through possible solutions. Ironically, he was a master at his trade in heating/air conditioning and was incredibly good at home repairs, helping neighbors and families with boilers, clearing floods, making heating/A/C decisions. Even from the hospice he gave me the perfect solution for dealing with the radiator and my freezing apartment.

He was like a father to Ben, who has ALS/Lou Gehrig’s disease, and was always looking for any gadget that would make his life easier. And they often do!  I never had dinner with him where he didn’t order something for me to bring Ben, who cannot really get out very much at all any more. In the days when we did visit my dad, he would show Ben his gadgets, books and WW2 bullet casings and they would sit and talk about the wars. They both loved it.

I always knew how loved I was and I loved him. We used to speak maybe 5 or 7 times a day, sometimes to share what was on TV, or make each other laugh, or more recently, when he was living alone, I would remind him to eat and see how he felt every time I had a free period at school.  Because I was a Spanish teacher he started watching Spanish television and he would call and ask me what words meant. I used to joke with my students that he worked harder than they did. But, it also intrigued them that my dad cared so much about what I did. And that was an important life lesson for many of them.

He was a man who was so devoted to his family. He always said that he just loved to hear my mom and I giggle with my grandmother. He was so proud to send my mom to meet me in England, even though both of us were amazed at her inability to work a luggage cart! He took care of my grandma, his mother-in-law, driving to and from work in Brooklyn to Woodmere to drive her to the beauty parlor, wait for her to be finished, drive her home, and then go back to work. He was honored and almost humbled that Uncle Larry called him every single Friday. He really missed Uncle Larry. There isn’t a friend or a child of a friend of mine that he did not ask and care about.

He was generous and was more comfortable giving than receiving help.  He taught me by example to be kind, generous and compassionate and to have a sense of humor. I already miss the phone calls. But I am still talking to him.

Happy Anniversary, Pinocchio- Lessons On Caregiving and Heartstrings

Caregiving, Walt Disney World, Disney, Pinocchio

Pinocchio and Jiminy Cricket
Walt Disney World

Pinocchio was released on February 7, 1940. I do love this story of the mischievous little puppet who just wants to be a real boy. For me, so much of the film is about the song lyrics. They took on a special meaning when I was a caregiver and they continue to touch my heart.

When times are hard during caregiving, whether it is in the role of caregiving itself or in watching your caree struggle, it is easy to wish, as Pinocchio did:

I’ve got no strings
So I have fun
I’m not tied up to anyone
They’ve got strings
But you can see
There are no strings on me

There were times when I just wanted to stroll home instead of rushing to tend to Ben, or go to dinner with a friend, or watch tv without an interruption. For me, much stress came when Ben was feeling frustrated and took it out on me by being critical and difficult. Ben did not want to accept that he needed more care than I alone could provide. He did not want to admit that he was afraid to stay alone. I did not know how to approach him about the fact that he needed more care. I didn’t want to disappoint him and yet I was upset because his expectations were unrealistic. I was upset with myself for rarely standing up for myself. Frustration was perfectly understandable on both of our parts.

The truth was that I was attached not by puppet strings, but by my heartstrings. When I did have some time to myself, Ben was pretty much the only thing on my mind. If I went out, I constantly texted him to see if everything was ok, even when someone was with him. I knew he was most comfortable with me and I was most comfortable when I was there.

When he did finally agree to get a home health aide, we had our routines for when they would update me. I had my phone with me at all times waiting for his text telling me that he was awake and seated at his computer. Even when he was in the hospital, and I knew he had constant medical attention, I felt the need to be there. After all, he could not even move his hand to use a call button. The strings that attached us were unbreakable.

I had a lot of support from friends, his medical care team and some family. Of course, they were concerned about Ben, but they were also concerned about me and that I was running myself ragged. I know the philosophy that if you don’t take care of yourself, you can’t take care of anyone else. But, it was impossible for me to prioritize myself knowing that Ben had ALS and it was progressing, and knowing that he could not help needing assistance. In the back of my mind, he was dying, so while he was here I had to do anything to help, advocate for and entertain him.

There are also certain realities that affected caregiving. Insurance does not cover home health aides. Since ALS is a disease that does not have a predictable progression, even when he admitted to needing help, he was afraid that he would completely deplete his savings. These are such stressful situations to deal with in the midst of dealing with the physical and emotional impact of the disease. It is tragic that better care and attention is not given to circumstances such as these and to supporting caregivers and carees. I could devote many blogs to that subject!

So many people told me that I simply had to tell Ben that I could not care for him anymore, or that he could not stay in the apartment anymore, or that he had to begin to pay for care. People are very good at giving advice. And, in my experience, they really do mean well. Interestingly, they don’t always follow the advice they give. Some people who told me to take a hard line with Ben have then found themselves in caregiving situations where they were also towing the line without support and with unrealistic expectations from their caree and others.

In grief, people have also told me what I “should do.” Again, they mean well. Some people think that blogging and pursuing opportunities to support other caregivers has kept me in the past. I disagree. I feel it is important, and even responsible, and it is also rewarding. It allows me to take my experiences and use them positively as I move forward. But, no one should really have to defend themselves. I say this here because, as caregivers, and then in grief, we all have to step back into life and redefine ourselves, and maybe my own experience will give other caregivers food for thought.  The bottom line is that we all know in our hearts what we have to do because our consciences are our guides. We can request and get advice, but only we know ourselves and our circumstances. And, until you walk in someone else’s shoes, you cannot clearly judge them. This applies to caregivers and to carees.

Jiminy Cricket was so right when he said, “Always let your conscience be your guide.” I had to do what I felt was right for Ben. I hope that I’ve come out of the experience with a stronger ability to communicate my feelings, but I still would not have changed my actions. Although I always worried that I was not a good enough caregiver, particularly when Ben was in bad spirits and critical of me, I let my conscience be my guide. I look back and am grateful that, in the end, Ben was able to stay at home with me until he went into the hospital, and I was at his side until the very moment when he left this world.

As I wrote in a previous post, I still believe in making wishes, and I love the song “When You Wish Upon a Star.” I wished that Ben would find peace and I do believe that he is now in a place where he can walk and talk and eat and play his musical instruments. I wish for a cure for ALS. Whenever I see a fountain, I toss a coin to wish for a cure for ALS. I will continue to wish until it comes true because, as the song goes:

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true

Happy Anniversary, Peter Pan- About Faith, Trust, Pixie Dust and Thinking Happy Thoughts

Magic Kingdom, 2006- pre-ALS days

Peter Pan was originally released on February 5, 1953.  Ben and I loved the film. What adult has not chuckled at how they spent their childhoods waiting to grow up just to wish that they had stayed children?  I am a firm believer in embracing my inner child. Ben also loved to tap his inner child. Walt Disney World is a place where it is a requirement! Maybe that’s why Ben and I loved it so much!

February is a difficult month for me. My dad’s birthday and date of his death, Ben’s birthday, the anniversary of my grandma’s death. A lot of milestones within a short period of time. Think happy thoughts. It’s not always easy when I’m feeling down, but it’s also important and helpful for me to remember the good times, even if it makes me cry. Thank you, Peter Pan, for the good advice.

 Think happy thoughts took on a whole new meaning when Ben was struggling with ALS and I was struggling with caregiving. ALS is known to be a very isolating disease. I’m sure that even when he was not literally alone, Ben felt isolated. I felt so helpless when Ben hurt because sometimes, it was so hard to speak to explain himself and be understood, that he just shook his head and stopped trying. Also, with every day came the dread of what ability he would lose. Sometimes he simply had a bad day and other times there was an obvious change in his health. There were days when I was able to care for him without any problems, but then there were the days when it was exhausting and overwhelming, and if I was having back issues, it was physically painful. We cannot walk in the shoes of our loved ones, we can only love them. Love is a lot. Thinking happy thoughts is a lot, too, because, along with love, it lets us remember who we were and what was important before illness changed things. When facing a terminal disease, the unhappy thoughts come easily. The happy thoughts seem surreal, and yet, they let us escape and remember. For us, happy thoughts almost always included memories of our visits to Walt Disney World. Ben spent so much time every day looking at the videos and photos from our visits to Walt Disney World. We loved to listen to the music from the parks, too. He went on their vacation planning web site to plan fantasy trips. I liked to see him planning because I felt it kept his head in living and focusing on what he could do. I truly believe that helped him manage the disease pretty well for about four years.

On those very difficult days when eating was a challenge, or there was a fall, or some other accident, or even just a lack of energy to transfer or be transferred, we had to remember, “All you need is faith, trust and a little pixie dust!”So much happens with illnesses and caregiving that is unpredictable and beyond our control. For me to maintain a certain state of calm that allowed me to be a problem solver, I needed to have faith and trust that things would ultimately be okay. The pixie dust was the whimsy that always let my inner child thrive in the midst of very grown-up, complex circumstances. Sometimes it was just a loving moment between Ben and me that would make us laugh. Sometimes it came from friends, sometimes it came from caring strangers, and sometimes it came from both of us taking a moment to remember the good and loving times. And, with faith, trust and pixie dust, we even made it back to Walt Disney World four times during his illness.

I named my blog Pixie Dust For Caregivers because quotes like this, as well as many Disney characters, films, lyrics and attractions from the Parks were the pixie dust that gave me perspective, inspiration, and comfort during the caregiving years and as I have been working through grief and rebuilding my life. They helped Ben, too. At times, they simply gave us much needed entertainment.

We did love the Peter Pan attraction at Walt Disney World. We loved to soar over Neverland on the pirate ship. Unfortunately, it is not accessible and has to be boarded while it is in motion. Ben had trouble with balance and walking early on, so it was the first ride we had to give up. Still, we never lost our love for Peter Pan and Tinker Bell.

A line in the song “You Can Fly,” is, “Think of all the joy you’ll find when you leave the world behind and bid your cares goodbye.”  I wanted Ben to have peace and to feel comfort he had not felt in the nearly six years he bravely battled ALS. Tragically, ALS was not going away. He was not going to get better. He was miserable after he got his tracheostomy and feeding tube, and he made the decision to be removed from the ventilator. He was ready to leave the world. I am still glad that he was able to make that decision for himself. My own emotions were all over the place- devastation that I was going to lose him in just a few days, along with relief that he would indeed, leave his cares behind and be free from the physical and emotional pain and constraints of the disease that rendered him unable to breathe on his own, speak, eat or walk.

Peter Pan said, “To die would be an awfully big adventure.” I don’t know that Ben would have called ALS an adventure, but it was a journey. A very difficult journey that he navigated with much bravery. Now, I put faith, trust and pixie dust in the belief that Ben has “bid his cares goodbye” and he is in a peaceful place where he can walk and run and eat and talk and sing and use his hands to use the computer and play his instruments. That gives me peace.

I guess it’s my turn to think happy thoughts and have faith and trust that pixie dust will sprinkle good things on my future. It has certainly brought me a lot of love and good memories.

“All you need is faith, trust and pixie dust!”

Finding Inspiration During Caregiving and Grief

Recently, I saw a Broadway musical called, The Prom. In a nutshell, the plot is that in a small town in Indiana, a girl invites another girl to a prom, which causes a huge controversy. Some Broadway actors whose careers are floundering decide to get some positive press for themselves by becoming champions of the issue. It was a fun time with good music and a strong and positive message about acceptance, standing up for yourself, and love. Little did I know that at this show, I would discover a song called We Look To Youwhich so perfectly expresses how much theater means to me and how it has helped me during rough times of caregiving and grief. I am sharing the lyrics here, as well as a video with the song for you to listen to. You may not share my passion for musical theater, but I think that many of you can relate to the peace that you find in your passion, whatever the hobby or activity.

This song is sung by the principal of the school where the prom will take place, in a conversation he has with one of the actors who is visiting the school about how much theater has meant to him.

We Look To You
Music by Matthew Sklar
Lyrics by Chad Beguelin
Mr. Hawkins: Michael Potts
Dee Dee Allen: Beth Leavel

HAWKINS:
My days have little glamour

Writing memos, making calls
And wincing at the grammar
Written on the bathroom walls
It’s all school supplies and budget size
And wading through red tape
That’s why I love the theater
It’s how I escape

DEE DEE:
So, theater is a distraction? Is that what you’re saying?

MR. HAWKINS:
No, a distraction is momentary. An escape helps you heal

We look to you
To take us away
From the soul-crushing jobs
And emasculating pay
When our lives come up short
And our hopes are sad and few
You whisk us off to some place strange and new

We look to you
In good times and bad
The worlds you create
Make the real ones seem less sad
The curtain goes up
And every now and then it feels as if we’re coming home again
Yes, coming home again

We need a place to run to
When everything goes wrong
When the answer to each problem
Is to burst into a song
And standard rules of logic just simply don’t apply
When people dance in unison
And no one wonders why

DEE DEE:
You make it sound so beautiful

MR. HAWKINS:
We look to you
As strange as it seems
When reality goes to scary new extremes
So don’t ever give up
And this I guarantee
Next time you think no one cares
You can look to me

DEE DEE:
Thank you, that means a lot

MR. HAWKINS:
No, thank you

I’ve written a lot about how theater is one of my favorite things about New York City. When I was caring for my dad and Ben, I was not able to attend theater very often. I even started to lose touch with what shows were running. I was not even aware of the Hamilton-mania. That’s unusual for me. On the occasions when I was able to go to the theater or ballet- usually if Ben’s daughter was willing to visit with him-my experiences were not as magical as they had been. I felt like I was selfish for wanting the time for myself given what my dad and Ben were going through. There was guilt about going out without Ben. There was sadness because even though we did not always go to the theater together, the knowledge that I would never again go to the theater with him cast a shadow over the event. Also, there was always the worry about what was happening when I was not at home, so intermissions were spent calling and then, when he couldn’t speak on the phone, texting. I never completely escaped.

The arts- particularly theater- are where I find my peace of mind. I feel excitement when the overture of a musical begins and I am energized when I see a fantastic song and dance number. Song lyrics speak to my heart. I remember being in the hospital one day when pianist in the atrium began playing Something Wonderful from The King and I, probably my favorite musical. I stopped and listened and cried, thinking of the lyrics and how they expressed that the King didn’t always say the right thing, but he would suddenly say something perfect and beautiful. I could picture the scene where the song is sung and I cried thinking about how life had changed since we could just sit and watch a movie without a care. I related to that in the tension that Ben and I would feel and express on the difficult days of ALS. When I spent long days and nights at the hospital with Ben, it was a Disney song, One Dance that finally allowed me to react to all of the profound sadness and thoughts of losing Ben that I was feeling but did not even have the time to acknowledge.  You can read about that by clicking here.

Listening to We Look to You during The Prom was hearing exactly how I feel about going to the theater. Theater was and is my escape, and I had difficulty fully indulging in that escape when I was caregiving. It reminded me of how nearly impossible, yet vitally important, it was for me to hold onto my identity when I was a caregiver. At the same time, as I watched Ben and my dad losing their lives, I seriously struggled with not wanting to be selfish when I expressed a need for time for myself. Losing myself while I was losing my loved ones and, in the case of Ben, a future that I foresaw, added to my devastation, resentment and frustration.

After I lost Ben, I had to think about how to put my life back together. Seeing my friends and planning to go to the theater were my priorities. I went through motions and kept myself distracted during the school year, but I was worried about my first summer alone, as the first anniversary of Ben’s loss approached. Would I be consumed with memories of the prior summer, reliving days in the hospital and ultimately, losing Ben? It didn’t take long to decide that I would get tickets to all of the shows that I had wanted to see but could not while I was a caregiver. I was excited about it. I full expected that theater would allow me to lose myself, and, hopefully, heal and rediscover myself. But, once in the theater, I lacked enthusiasm. It wasn’t that I didn’t enjoy many of the performances. But, it was not the same. I heard from so many people that I had my “freedom.” Indeed, my time was my own, but I was not free from grief. Being in the theater without him only reminded me of how alone I was and how much I missed Ben. I felt guilty about engaging in life. I felt like I should not and could not really enjoy myself. It felt wrong to in any way convey, even in my own mind, that it was a relief to be free of the caregiving because that felt like I was saying that I was relieved that Ben was gone. So, there I was at the theater, my favorite escape, not escaping the bad feelings and, in some ways, feeling worse.

I do reflect quite a bit on how I navigate life and grief. Now, more than three years have passed, and I have finally adjusted to going to the theater without Ben. I am always keenly aware of his absence, and yet, I know that he is with me. I don’t feel the conflict of feeling guilty for feeling good, though I do sometimes struggle with anger that he was cheated of so much life and that we were cheated of so much time together. I have re-embraced the fact that I loved the theater since I was a child, and enjoying theater is an important part of who I am.
I am truly grateful to the many performers, on stage and screen, and the writers, musicians and lyricists- the creative souls in the performing arts- whom I have looked to and who have touched my heart in so many ways... Click To Tweet

I noticed that when I left my apartment and headed to meet my friend for brunch and then the theater, that I was not dwelling on how I was handling it and reminding myself of how life has changed and I am alone. I did not have to coach myself to have a good day.  Instead, I looked forward to seeing my friend and enjoying the show, and I realized that, although changed from my experiences, I have come back to life and to myself. I frequently attend theater. I laugh and smile, and sometimes cry, with my whole heart, because I am lost in the production. It is not just a distraction that is barely holding my attention. There are certainly times that I think about how Ben would react to a performance because something particular reminds me of him. Watching the musicians has become much more significant to me because of how much Ben loved live music. There are still unexpected triggers of sadness and setbacks, but, going to the theater is a huge comfort and joy that helps me heal and feel inspired to live, laugh and love. My friends know that I have always been starstruck, but I am truly grateful to the many performers, on stage and screen, and the writers, musicians and lyricists- the creative souls in the performing arts- whom I have looked to and who have touched my heart in so many ways, in good and bad times.

Last summer, I created a webinar called, Finding Inspiration and Protecting Your Identity During Caregiving. As caregivers, we put ourselves aside for the people we love. The needs of my dad and Ben were immediate and urgent. My need to take care of myself could be addressed at some other time. But, as all caregivers know, “some other time” rarely, or easily, appears. Things like attending the theater with any kind of regularity were not possible. My webinar explored my own search for ways to take care of myself and hold onto my identity, while being Abby the daughter and the wife and the caregiver and coping with anticipatory grief, as well as feelings of guilt, selfishness and desperation, If you’re struggling with balancing care for yourself and your caree, I hope you’ll find in this webinar some strategies for finding ways to do things you love, that keep you in touch with yourself, in a manageable timeframe. Click here to access the webinar.

Please share your own struggles or strategies for holding onto your identity during caregiving in the comments below or on the Pixie Dust For Caregivers Facebook page. Let’s help each other to heal and grow.

 

 

What Olaf Knows About Caregiving and Melting

Olaf had to come home with me!

The weather in NYC has been crazy. We were in a deep freeze one day, and then near 60 degrees two days later. Of course, Frozen came to mind. I’ve written before about what Olaf knew about love and melting (click here to read that post), but the drastic weather and reminded me of Olaf and his lessons on love and caring. The sweet and goofy snowman continues to sum up my caregiving experience at its core.

My apartment is generally as warm as a sauna. In fact, I have been sleeping with the air conditioner! During that one ridiculously cold day, even my apartment was cold. I could not help but reflect on days spent trying to help Ben to keep warm.

Before ALS, Ben and I both liked the cold. Other than Walt Disney World, Vermont was our favorite getaway, especially in winter. Once ALS progressed, the cold posed challenges and problems for Ben. It was harder for him to move when he was cold. I think it may also have affected his respiratory comfort, though his significant decline in that area began in the warmer weather.

Although it is usually very warm, the apartment is drafty and Ben could not tolerate the cold. I bought big plastic insulation tarps and put them over our windows. They did help but it looked terrible and they came loose frequently, sometimes requiring middle of the night fixes.  We did what we had to do. We became accustomed to living crisis to crisis in an apartment that was a disaster.

"Some people are worth melting for," Olaf, Frozen,ALS

“Some people are worth melting for.”- Olaf

Most blankets felt heavy on Ben as his strength diminished, and piling on sweaters made movement even more difficult than it had already become due to the ALS. We found a couple of quilts that were the size of a throw, which made it easier for him to manage. We could not sleep under the same blanket because any tugging or shifting made him uncomfortable. A blanket may seem like a very minor accommodation, but it symbolized relationship changes that took an emotional toll. Suddenly, the life we enjoyed began to  change and foretell a sad future, and the way we related to each other changed in very profound ways as we shifted from being husband and wife to patient and caregiver. As Olaf said, “Some people are worth melting for.”

I am resourceful and a born shopper, so I was always delighted to find solutions, even if they were temporary. Ben was very skeptical of the little space heater that I brought home one day. I plugged it in as he said it wouldn’t help. It did! He loved that space heater!

I made a blanket of some of our favorite photos from Walt Disney World, and a microfiber towel as well. For the days that Ben did not get to his computer, or felt chilly, he was always surrounded by the photos that he loved so much.

Photo collage blanket.

Dressing for cold weather, even within our apartment, also required creativity. Ben loved insulated puffer vests because they kept him warm without bulk and heaviness, and also  gave him some freedom of motion in his arms. He liked sweatshirts that were zippered hoodies because they were easier to put on and to remove, even though he needed assistance to do so. He did find adaptive zipper pulls that he liked. These gave him some independence and that was important for his frame of mind.

Fleece sweaters were often a great option because they were lightweight. Waffle/thermal shirts were cozy for him and allowed for easy layering. He was amused by the camouflage shirts I found for him because they reminded us of how much my dad, the Marine, loved his camouflage! Even as the temperatures dropped, Ben still wore his favorite regular tshirts underneath his warmer clothes. He loved his tshirts. They keep me warm now in the tshirt quilt that I made from them.

Caregiving,Grief,ALS,Memories

A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.

It was definitely a challenge for both of us to be comfortable in the same space. Once again, Olaf got it right when he said, “Love is putting someone else’s needs before yours.” I was warm or Ben was cold, but Ben needed to be warm. Physically, the apartment was a mess, with supplies accumulating, space shrinking, and furniture moving according to his needs. At one point, my dresser had to be moved to accommodate his chair, and it blocked the closet. For several months, I either wore what was in the drawers or whatever my hand could reach in the closet. Now, I look back and laugh at the chaos that was our life. Then, we lived crisis to crisis, and despite our frequent ability to see the hilarity in the situations, it sometimes left us feeling helpless and hopeless.

"Love is putting someone else's needs before yours," Olaf,Frozen,ALS

“Love is putting someone else’s needs before yours.”- Olaf, Frozen

Now, I am trying to keep my cat, Disney, warm. With her arthritis and cancer, she is having some trouble walking around. It breaks my heart but I am trying to keep her as comfortable as possible so that she has a good quality of life. I use Ben’s hot water bottle and our heating pad and try to convince her to rest on them. I did put her in her little pajamas, which she actually seemed to like.

Going through these motions does leave me feeling a little melancholy. It feels like a long time ago that these were my caregiving responsibilities, and it also feels like just yesterday. Although I don’t mind being chilly- in fact, I prefer it, I always feel a little guilty admitting these things. I’d tolerate any kind of weather if Ben was here and well. I miss Ben. I cannot deny the inconveniences and the emotional pain we both experienced. Ultimately, Ben’s needs unquestionably came first, and a little melting was a small price to pay. My heart is warmed to know that now he is free of the constraints of ALS.

Walt Disney World,Frozen,ALS,Caregiving

Walt Disney World’s Hollywood Studios (July 2014)