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An Important Book for Caregivers: Home Hospice Navigation

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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.

These Disney Quotes and Lyrics Sprinkle Pixie Dust On The Pain of Loss and Grief

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Walt Disney World, Halloween

Ben and I at Walt Disney World, Halloween 2011. Good memories are always a comfort.

 

Last week was the three-year anniversary of the day that Ben left this world. Holiday weekends also add to the loneliness and feeling of floundering, as does the anxiety of a new school year. I got to thinking about the many Disney quotes that have helped me deal with loss and grief. I am aware that loss and grief did not begin with death. As soon as there was a diagnosis, and throughout the progression of ALS (and my dad’s cancer), I grieved the loss of the relationship that we knew and enjoyed, the loss of Ben’s abilities and how he mourned them, and the loss of dreams of our future together. Here are some favorite quotes and songs that remind us that as hard as it is to lose those we love, they do remain with us in our hearts.  That’s not always enough, and sometimes it isn’t even close, but it is a lot. There are times when we miss them so much that we ache and there are times that we recall memories that make us smile and laugh. We hear their voices and their guidance in our heads, we are comforted by some memories and haunted by others, but, in my mind, we were fortunate to have that kind of love in our lives.

I am including links to posts in which I refer to these quotes and songs, but I don’t think they need explanation. They are offered here to give perspective and comfort during difficult times. Please feel free to share your reactions. Or, share your own favorite inspirations.

“Love is a song that never ends”– From Bambi (1942)

From Bambi. (1942), Walt Disney Pictures

Here is the music clip to accompany the lyrics to this beautiful song.

Music by Frank Churchill
Lyrics by Larry Morey

Love is a song that never ends
Life may be swift and fleeting
Hope may die yet love’s beautiful music
Comes each day like the dawn.

Love is a song that never ends
One simple theme repeating
Like the voice of a heavenly choir
Love’s sweet music flows on.

Click here for the post.

 

“Look at the stars, the kings of the past look down at us from those stars. Whenever you feel alone, just remember that those kings will always be there to guide you and so will I.” – Mufasa to Simba, The Lion King, Walt Disney Pictures 1994

Click here for the post.

 

Evermore
Written by Alan Menken and Tim Rice
Performed by Josh Groban, from the Beauty and the Beast (2017) soundtrack.

Now I know she’ll never leave me
Even as she fades from view
She will still inspire me
Be a part of everything I do
Wasting in my lonely tower
Waiting by an open door
I’ll fool myself, she’ll walk right in
And as the long, long nights begin
I’ll think of all that might have been
Waiting here for evermore

Click here for the post.

 

How Does a Moment Last Forever
Written by Alan Menken and Tim Rice, Disney’s Live Action Beauty and the Beast, 2017.

How does a moment last forever?
How can a story never die?
It is love we must hold onto
Never easy, but we try
Sometimes our happiness is captured
Somehow, a time and place stand still
Love lives on inside our hearts and always will

Click here for the post.

 

There’s nowhere you could go that I won’t be with you. –Gramma Tala, Moana, Walt Disney Pictures 2016

Grief,Grandmother,Moana,Gramma Tala,Walt Disney Pictures
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Remember Me
Lyrics from Coco,
Disney Pixar 2017

Written by Kristen Anderson-Lopez and Robert Lopez
Performed by Miguel, featuring Natalia Lafourcade

Remember me
Though I have to say goodbye
Remember me
Don’t let it make you cry
For even if I’m far away I hold you in my heart
I sing a secret song to you each night we are apart

Remember me
Though I have to travel far
Remember me
Each time you hear a sad guitar
Know that I’m with you the only way that I can be
Until you’re in my arms again
Remember me

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When you lose someone  you love, they never really leave you. They move into a special place in your heart. – Mrs. Frankenstein, Frankenweenie, Walt Disney Pictures 2012

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“Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.”– Widow Tweed to Tod
The Fox and the Hound, Walt Disney Productions 1981

Click here for the post.

 

But if you want to leave, you can. I’ll remember you though. [looking at her picture of her dead parents] I remember everyone that leaves.– Lilo, Lilo and Stitch, Walt Disney Pictures 2002

ALS,Caregiving,Grief,Walt Disney World, Disney

They aren’t always together, so May 2010 was a big deal! Well, it was for me!

July 2014, Breakfast at the Polynesian Hotel.

Click here for a post on family and click here for a post on the significance of Lilo and Stitch in our experience.

 

If ever there’s a tomorrow when we’re not together, there’s something you must remember…You are braver than you believe and stronger than you seem and smarter than you think…. But the most important thing is, even if we’re apart, I’ll always be with you. -Christopher Robin to Winnie the Pooh, 

This clip has the whole sweet conversation between Christopher Robin and Pooh, from Pooh’s Grand Adventure: The Search for Christopher Robin (1977), Walt Disney Television Animation

Click here for the post.

What Simba and I Know About Grief, Disappointment and Loneliness

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On the heels of the third anniversary of the loss of Ben, I got medical test results that indicated that further testing is needed. My doctor is not concerned and believes I’m fine, but says it should be addressed. I am a terrible patient, which any of my doctors will attest. Just going for a check-up comes with a lot of anxiety. Ben was much braver than I am. My cat, Disney, is much braver than I am. Now, I have to go to a different doctor, which causes a lot more stress. And, this doctor is away for the week. Normally, I email or call a couple of friends to vent and get suggestions. This time, I chose not to. I don’t want to be the bearer of more sad news in my life, especially when I’ve been doing better. I guess this post will put it out there, but it is not something I want to discuss.

When my dad and Ben were ill, I was the dutiful and loving caregiver who accompanied them to every medical appointment. They were never alone. Likewise, when Ben was well, if I was nervous about an appointment, he accompanied me without my asking. Ben was frustrated that he could not join me when I called him from the emergency room that I had broken my shoulder, but he was still at home to comfort me. Things have changed. Two years ago, I had to have a pretty standard out-patient procedure. I had arranged, per protocol, to have a friend meet me afterwards, but I went to the hospital by myself. I didn’t think it would be so much like going into surgery, so I was overwhelmed by the situation. My doctor is pretty good at anticipating and handling what a nervous wreck I am, but I was not dealing well with all of the strangers.  I don’t think I ever felt so alone. It was then that I realized that I might carry Ben in my heart, but at times like this, the truth is that I am by myself. I am probably most comfortable as the caregiver rather than the caree, but this circumstance made me see that there are times I want to be cared for. I have wonderful friends who would be there if I ask them, but I no longer have that person who would be there without my asking. Thankfully, everything was fine. But, if there had been complications, or if there are any complications this time around, I am pretty much on my own to tackle them. Hopefully, my doctor is correct and I am fine. Right now, I’m having a little pity party and feeling like Simba- “You said you’d always be there for me, but you’re not.” Ben may be watching over me, but at times like this, it’s not enough.

Life happens, healing happens, and setbacks happen. Disney always helps me deal with my feelings. The Lion King is just one of the films that’s helped me deal with loss and grief (see that post by clicking here). Writing is another way that I cope with the setbacks. It helps me to channel my sadness and frustration. Writing sometimes takes the issue and breaks it down. It won’t change my reality, but it does relieve some of my near hysteria. It was a good way to start this period of waiting to see this new doctor. I hope that anyone who reads this has strategies to help cope with sadness and grief. Feel free to share your own strategies in the comments, as they may inspire others.

I like to put a positive spin on things, so maybe I have to say to myself that this will be one more way that I learn that I am braver than I believe and stronger than I seem. I will remind myself that I am fortunate to be able to function independently and at least fairly wisely. For now, I just wish they were here.

 

Three Years- How I Can Feel the Pixie Dust

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ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter. Here, he was laughing at me when I met Tinker Bell.

Today marks three years since Ben left this world. It’s a difficult day. Last night was a difficult night.  I relived that time three years ago, staying in the hospital and watching Ben sleep, knowing that it was his last night, wondering what he was thinking as he slept. I remember my fear and anxiety and sadness.  I remember those hectic hours before those who loved and treated him gathered as he separated from the vent. It was scary and somber, and yet, seeing Ben surrounded by love and music- and how wonderful and yet bittersweet it was to say our vows- was quite beautiful. Ben used to get frustrated with me about my lack of confidence, so I think he would be happy that I do feel pride that I turned to Dr. Muller, his much beloved doctor and my frequent source of strength, who helped me to pull together a loving farewell.

Although it has been three years, this remains a day for which I brace myself. I woke up with a headache that I am still fighting. I thought I might go to Central Park to see our turtles because I know they are messages from Ben. I decided that I just want to stay home with my thoughts and memories. I simply don’t want to be around anyone. I’m giving myself this day.

My Disney friends have taught me well that Ben will always be with me in my heart. I feel especially connected to Ben when I watch his favorite films- The Incredibles, Toy Story 1,2 and 3, and Monsters, Inc. Today, I decided to watch the Tinker Bell films. I have not been able to watch them without Ben but today, I felt compelled to tackle this and revisit my tiny friends and the huge sentiments they invoke. They have indeed been hard to watch today, too, though they are so special to me. Those are films we often watched late at night because the soundtracks were like lullabies to me. As joyful and sweet as they are, they also bring back the memories of rough evenings when just transferring Ben into bed was physically and emotionally stressful. We rarely had a full night’s sleep because as ALS affected Ben’s breathing, he had a lot of anxiety about sleeping; he could not turn by himself; and then there were times that he needed to use the commode in the middle of the night. I do have to say that it always made me smile to open my eyes and see Ben totally enthralled by the fairies. Since the Blu-Ray films looped, when he had trouble sleeping, he would watch them over and over while I slept. I remember once saying that I didn’t quite remember the plot of Tinker Bell and the Lost Treasure because I always fell asleep before the ending and Ben shook his head and said, “she was a very bad girl in that one.” I looked at him with a smirk on my face and we both started to laugh. He loved those little fairies. I loved that about him. I loved to come home and see him watching, Pixie Hollow Games.  I think Ben was more excited than I was when Tinker Bell and the Pirate Fairy was released, because Ben loved pirates (click here for more about that!)

While all of the Tinker Bell movies held a special place in our hearts, it was Tinker Bell and the Legend of the Neverbeast that was unexpectedly emotional. In this film, the fairies meet and help Gruff, the Neverbeast, a frightening looking creature who comes to life every thousand years. Though he is feared by the fairies because he is fabled to want to destroy Pixie Hollow, he is actually more friend than foe. I remember how Ben and I cried at a couple of points during that particular film: when Gruff saves Fawn’s life, which, of course, no one could do for Ben or anyone else with ALS; and then, as Fawn told Gruff, “Hey, big guy. I-I won’t see you again, but I know you’ll always be there when we need you. I’m really gonna miss you. I love you, Gruff.” Though Ben did not like to talk a lot about dying, the film brought his emotions to the surface.  Tinker Bell and her friends sprinkled the pixie dust that gave him insight and permission to feel, and, also gave me insight into things he was not outwardly expressing. It was painful to watch those scenes again today, and there have been many tears, but it is an important reminder of our good memories and how Ben is always here for me. Never underestimate the power of Disney magic to convey very big messages in even the tiniest fairies.

Tinker Bell and the Legend of the Neverbeast, Disneytoon Studios 2015

Yes, it’s been three years. I have seen grief shift from emotionally paralyzing to something with which I co-exist. I continue to assess my feelings and compare them through the passage of time. I have created a new normal for myself with a special place for Ben’s presence. I struggle with his absence at times, as I did when I went to the Georgia Aquarium this summer (click here for that post). I do look for and see messages and signs from Ben. I keep him in my thoughts and wonder what he would think and how he would see things. I have stepped forward and, just like Gruff was for the fairies, Ben is here when I need him, just in a different way. It is ok that today is a bad day. Any way that I would have chosen to spend today would be okay because, no matter what, Ben is in my heart.  I know that overall, I am doing better at delving into and living my life. Just not today.

Once again, I am sharing the video that I made on the first anniversary of this day. It continues to make me smile to see and share so many lovely memories and to hear Ben’s favorite Beatles song, “In My Life.” I love you and miss you, my silly Ben.

What Piglet and His Best Friend Pooh Knew About The Care In Caregiving

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Halloween 2012

Disney’s Christopher Robin made a big impression on me, and I can’t stop thinking about it. I think I’ll have to see it again! (and probably again after that, and many times once the DVD becomes available!)

I’ve been reminiscing about Pooh and Piglet played a big part in how Ben won my heart. When Ben and I first started dating, we often walked to the flagship Disney Store on Fifth Avenue in Manhattan. It is no longer at that location. We wandered the 3 floors and I often left with little gifts- the courting phase of a relationship is fun, indeed!

Having spent increasing amounts of time with me, Ben was becoming fully immersed in the Disney mindset, and loving it, sometimes to his own amazement.  One day, as we strolled through the store, Ben called me over to look at a figurine, exclaiming, “Abby, look! It’s Piglet and his best friend, Pooh!” I stared at him, speechless, and then started to laugh. He shook his head, laughed, and said, “I was macho before I met you!” Truth be told, he was not so macho. He was a big teddy bear, and his great hugs could calm me down and completely surround me with love. He was a big kid at heart who indulged my inner child, and that was us.  He bought me that figurine as a surprise, and it will always be so special to me.

Disney Store,Winnie the Pooh,Piglet

Piglet and his Best Friend Pooh!
A very special figurine with very sweet memories.

When I saw Piglet and Pooh together in the film, I couldn’t help but picture Ben smiling. They have a such a beautiful, sweet friendship. Here’s one little conversation between them that touched my heart.

“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.”

That’s caregiving. It’s that simple and that complicated. Ben didn’t feel like himself as ALS took away his abilities. There were times that he was understandably frustrated and sad. All I could do was be there, trying to bring him comfort.

Sometimes it’s 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 the caree at 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 both 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.  And, I knew that he would find a way to show me he loved me.

Halloween 2011. Piglet was bigger than we’d imagined!

In another conversation:

“What day is it?” asked Pooh

“It’s today,” squeaked Piglet.

“My favorite day,” said Pooh.

It’s hard to imagine that any day with ALS can be a favorite day. There were definitely the big time highlights, like when Ben woke up on January 1, 2015, and he said that he had such a fun New Year’s Eve. I had ordered matching Mickey Mouse and Friends pajamas for us and even for my cat, Disney. Ben always loved the fireworks at Walt Disney World, and I found a toy that supposedly simulated fireworks, with sound effects and LED light “fireworks” that were activated by a remote control. We played the soundtrack to the “Wishes” Magic Kingdom fireworks show and Ben chose the sequence for our fireworks show while we had our photos scroll on his computer. It was pretty hilarious to pretend we were at the Magic Kingdom as we watched these pretty unconvincing fireworks splash on the wall. It felt almost magical to laugh and enjoy the evening. That silly celebration was a most favorite day and is now part of my treasure trove of beautiful memories of moments sprinkled with pixie dust.

Crystal Pavilion at Walt Disney World, May 2010. We took this trip right after Ben received his ALS diagnosis.

Any days spent at Walt Disney World were favorite days when Ben felt free as he rode around in his scooter or electric wheelchair. The Disney magic allowed him to enjoy most of the attractions and to temporarily abandon his worries.

Once he was homebound, Ben’s days did not vary much. But, every day that he was okay and things went smoothly, when we handled or averted a crisis, solved a problem, and enjoyed each other’s company, was a favorite day. We recognized, acknowledged and treasured those.

Winnie the Pooh commented, “There’s always time for a smackeral of wonder.” I think that’s true. And, it’s so important. Ben never lost his curiosity, sense of humor and ability to be inspired, particularly by music. When we were able to go to Walt Disney World, his inner child shone, and he marveled at everything he saw and all the music he heard. When he was home, he watched movies and documentaries and listened to music, always questioning, always learning, always with a sense of wonder and delight. I think that helped him to navigate ALS. Always finding time for a “smackeral of wonder” is good advice for all of us.

I believe that Ben would be especially happy that these lessons came from Piglet and his best friend, Pooh.

 

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