Caregiver

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.

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.

 

“Me Before You,” “Me After You,” and “Still Me”- Fiction That Speaks Truth About Caregiving, Grief and Life

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More wisdom from Walt. I love to read- all kinds of books. In more recent years I have read lots of self-help books related to illnesses, caregiving and grief.  In the past year, when I decided to try online dating, I’ve read what I believe are too many books about dating and writing online profiles. They’re not helping! But, I just completed a fiction book that nurtured my soul more than any nonfiction, self-improvement book, speaking a lot of truth about own life without Ben. It is called, Still Me, and it is the third book in what is now a trilogy by JoJo Moyes. It was enlightening, entertaining, validating and inspiring.

The first book in this trilogy is called, Me Before You. It tells the story of a young woman, Louisa, who can’t find herself, but she takes a job as the caregiver of a young man, Will, who is a paraplegic as a result of a car accident. In the course of the story, they fall in love, and, as you can imagine, it is complicated.

I remember being in a bookstore with a friend, and when I looked at the book, he said it was great, but I wouldn’t want to read it. Of course, that only intrigued me. The book was a best seller when Ben had ALS. The book takes you into Will’s experience in this body he doesn’t recognize and a life he cannot accept. Ben had always said that he wanted to do anything to stay alive, whether feeding tube or tracheostomy, but there was always the possibility that he would change his mind. I’m an emotional person, so after I read the book description and reviews, I was not sure how I would feel about reading a book about making a choice to life or die when I was dealing with ALS and losing Ben. On the other hand, I thought that the book might offer insight into the thoughts of someone who is contemplating his quality of life. I decided to read the book. It was a good decision. It was an absolutely beautiful book with a lot of love and interesting perspective. I related to Louisa’s  caregiving experiences and to many of the situations they endured.  In many ways Me Before You helped me to come to terms with accepting whatever decisions Ben would make about how he chose to live and die with ALS. That said, everyone has to make their own decision about whether they want to delve into reality in a book rather than a complete escape. The book was also made into a film, and, as is often the case, the film is not as good as the book. However, if you’re not sure about the book, but you’re curious, you might want to try the film.

I was one of the readers who longed for a sequel, and, thankfully, Jojo Moyes responded with Me After You. As you can probably imagine from the title, it tells the story of how Louisa deals with grief and how she ventures forth in the world to try to find herself, stepping forward and falling back. Again, I was looking for answers, for experiences to relate to, for validation of my own experience. I found them, and enjoyed following Louisa as her story continued. Sometimes, it’s just good to know that the story continues at all, even though it’s a fictional character!

In the third book, Still Me, Louisa is adjusting to her life and carrying Will with her in her heart. She hears his voice as she makes decisions. She looks for ways to honor him. That said, she moves into new romances and takes risks in her life, making some wondrous discoveries about herself. I related so strongly to Louisa creating a new life while finding a place for Will.  I was emotional for the rest of the day after I finished the book, and it has stayed with me, in a good way. I, too, am often guided by Ben. I’m not sure what my happy ending will look like. I know that I hope it includes romance because the relationship that I had with Ben brought so much to my life. The important thing was that the trilogy of books made me feel like that my feelings are normal. The process of caregiving, loss, grieving, and living takes many twists and turns and it did change me.  However, just like Louisa, I can move forward and keep Ben present. I have already made many discoveries about myself and taken many steps-and stumbles- in the nearly three years since Ben left this earth, and, despite a general lack of confidence, I continue to live and love.

I am grateful to Jojo Moyes for helping me to feel positive and cautiously optimistic. I wish she could write a happily ever after for me!

The books are not heavy, difficult reads- they are light and yet deep, and even filled with humor. The characters and relationships are heartwarming and relatable. As Walt said, there is a lot of treasure within them. If you’d like to gain some insights, while probably shedding some tears, this trilogy of books may be thought-provoking, inspiring and comforting. Check them out. Let me know what you think. Please share your reviews in the comments.

Finding Nemo and Dory Also Means Finding Good Advice on Caregiving and Life

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Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

I guess aquatic life has been on my mind since my little jaunt to the Georgia Aquarium and found Nemo and Dory and had so much fun with the sea otters, dolphin and penguins. Nemo, Dory and their friends helped me put into perspective a lot about caregiving and life. It’s not all about “just keep swimming!” but you can read about how that quote inspired me by clicking here.

  1. Some of the best help and support you receive will come from unexpected sources.

Finding Dory,Disney,ALS,Caregiving,Caregiver,GriefDory felt alone because she thought she would never find her mom and dad and have a family. She finally realized that Nemo and Marlin were also her family.  My friends are my family, too and they provided help and support for which I will always be grateful. So did some of the professionals who took care of Ben, and I will forever love and be grateful to them as well. Becky and Gerald may have seemed like they were not up to the task of helping Dory and her friends, but they also came through in big ways. Don’t automatically judge or dismiss people, especially if they genuinely want to help, because they may be the very people who will listen, assist and offer really good ideas and information. Teamwork happens in many ways. All kinds of people stepped in surprised us in wonderful ways throughout Ben’s illness, and they continue to do so. They have compensated for the people who disappointed us, because, of course, there’s that, too.  Knowing that Ben was in the hearts of many always touched me, and it still does. Never underestimate the power of compassion and always be open to delightful surprises.

2. Be careful of the undertow.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Caregiving is overwhelming for so many reasons. Aside from the demands of the job, there is an emotional toll of helping someone you love deal with any disability or illness and watching them struggle. The “undertow” can take a caregiver and/or a caree to a place of extreme sadness, depression, loneliness and helplessness.  It’s important to stay connected to the outside world, through your own network of friends and relatives, outside agencies, and social media support groups. Make lists of things and/or people that provide comfort, cheer, or assistance when the undertow starts pulling you down.

3. “I’m OK with crazy”- Hank

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Illnesses are unpredictable and caregiving needs are unpredictable. Our moods are also unpredictable, particularly when we are stressed, exhausted and our Tangled emotions are turning us Inside Out (what can I say? Disney references work for me!) You have to be ok with crazy when many things are happening at the same time that you have many conflicting emotions. And, you have to be ok with crazy when attempting to handle crises. I remember thinking that crazy was my new normal. Perspective helps! So does humor.

4. Not everything is easy to do, but there is always another way.

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Creativity, resourcefulness and a good sense of humor can help to determine new approaches and perspectives on how to deal with issues. Don’t be afraid to ask for help.

5. “News flash! Nobody’s fine!” – Hank

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

In the most planned and organized day, there will be crises. They can be physical issues but they can also be emotional fallout. Caregivers and carees are not always at their best, though we would like to be. It seems to me that our default answer to “how is everything? “ is “fine” and I’ve found that most people kind of want that answer because they don’t know how to handle anything else. I have heard people with ALS and their caregivers says that it irritates them to be asked that question because people really don’t want an honest answer and they don’t want details. And, they don’t want to feel obligated to do anything, even if there is no expectation of that. It’s ok to admit that things aren’t fine. That admission should not invite any judgment. And, it doesn’t mean that things won’t be fine again, even in a matter of moments. Remember, Hank taught us that we’re ok with crazy!

6. An octopus may have 3 hearts, but it doesn’t mean it’s nice.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Yes, it’s a fun fact, but it also lends perspective to our expectations of people around us. Ben and I were very fortunate to have lovely people around us, but we also learned that not everybody has a big heart, and having three probably would not have helped them either. Also, professionals are there to help, but, like all humans, there are more and less helpful and invested people. We were surprised in good and not so good ways.

7. Let someone know you love, care about and value them.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Marlin often gotten frustrated with Dory, but he realized that in her innocence, she was fearless and she got him to do “crazy things” like jump jellyfish and outsmart sharks to help find Nemo. His approach to problem solving became asking himself what Dory would do.

In the film, Marlin apologizes to Dory for not having told her how much she did for him. That’s not a regret anyone wants to have. Take any opportunity to share kind and loving moments and memories.  The frustrations and resentments will ebb and flow, but the appreciation and love we have for each other should always flow.

8. “What is so great about plans?”- Dory

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

We certainly need to have plans in place, and even back-up plans, but when you’re dealing with illnesses and caregivers, you’re also dealing with human beings and unpredictable factors.  For example, I prepared to go to work every day, but there were days that I had to stay home at the last minute for a variety of reasons. I remember that on some of those days, my feeling Ben’s very loving appreciation and his feeling my unwavering devotion, made for beautiful days. You know you have to be prepared for anything, but expect the unexpected in good ways, too.

9. You can do whatever you put your mind to.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Dory may have suffered from “short-term remembery loss,” but she dove in and figured out what she needed to do to find her parents. She enlisted her friends to help her and remained determined. She didn’t give much thought to consequences, which did create some problems for her along the way. But, she forged ahead. Caregiving can be very overwhelming at times, in terms of the actual tasks and in thinking about the future. But, I always come back to Christopher Robin’s wise advice to Winnie-the-Pooh: you are braver than you believe, stronger than you seem, and smarter than you think.

10. Never underestimate the power of a cuddle party!

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

I am kind of obsessed with river and sea otters, so those litter critters stole my heart in the film. But, they are a strong reminder that a little bit of whimsy, sweetness, and cuteness can lighten any moment. For Ben and me, that often came in the form of generally anything Disney. My huge collection of Disney toys to cuddle didn’t hurt either! I have added a couple of cute little otters to my collection. They all comfort me now in grief, too.

11. Sigourney Weaver rocks! You need someone like her on your side!

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Whether standing up to aliens or lending her voice to stand up for our marine life, she is a star! Sometimes I felt like that person for Ben, and at other times I felt completely inept. But I’m going to always keep reaching to be a rock star (well, maybe more of a Broadway show tunes or Disney star!)

All photos: Finding Dory, Pixar Animation Studios and Walt Disney Pictures, 2016

Walt Disney World’s Epcot, 2007, pre-ALS

 

Independence Day- On ALS and Independence

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Today, here in America, we celebrate Independence Day. In our challenging political climate, I cannot help but reflect on how our independence seems so fragile. I think about my dad on holidays such as these, and how he, the proud Marine, lamented that less and less families displayed a flag. As much as I miss him, I am relieved that he is not living through these times because I firmly believe that it would make him physically ill. He would be worried about my future, but at least now he is watching over me.

I also can’t help but think of independence as it relates to ALS.

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that ultimately results in the loss of voluntary muscle action. Patients are affected differently in terms of progression, but people may lose the ability to speak, eat, move and breathe in any order of events. Ben’s initial symptoms were weakness in his legs and lack of balance. Next, he struggled with the use of his arms and hands, then his ability to chew and swallow. His speech was impaired though he did not lose it until he had a tracheostomy, and he got a feeding tube at the same time.

Imagine the loss of all of those abilities that we take for granted. The Project ALS Don’t Talk-a-Thon underscores the physical speech while calling attention to its dramatic impact of a loss of self-expression on our psyches. People with ALS cannot independently take care of daily life activities. That is a physical and emotional struggle. I was always struck by Ben’s sense of humor and determination to devise strategies for managing on his own. He was quick to purchase things like adaptive zipper pulls and computer accessories that allowed him to function at least somewhat independently. He loved his scooter and electric wheelchair because they gave him the freedom to get around and be outside. As he lost dexterity in his hands, it became more difficult for him to steer, but he could be out and about.  He tried hard to avoid, for as long as possible, his loss of independence.

As Ben’s caregiver, as he became increasingly dependent on me, I, too, lost independence. This was an emotional battle for both of us. Even within couples and families, each person maintains a certain level of independence. Ben and I lost that independence, albeit in different ways. I could no longer take time for myself. And, I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. Ben and I were dependent on each other in this world in which our relationship was shifting beyond our control and we desperately wanted to maintain some semblance of who we were at our core, before ALS. After I lost Ben, I was frequently told that it was good that I could now reclaim my freedom. Only now, nearly three years later, am I becoming more comfortable with my independence. Still, I blog and maintain my deep connection to people who are experiencing ALS, as patients or caregivers. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence.

Walt Disney said that “Mickey Mouse is, to me, a symbol of independence.” This was said in the context of the success that it brought him and his company, and the freedom to pursue his dreams. “Independence” is vital to our existence in many literal and figurative ways. On Independence Day, we honor this country and its founding principles. Let’s be grateful for independence. Let’s fight to preserve those values that are currently under attack and being chipped away and could potentially impact on the medical care and research that strives to help make ALS more manageable and, ultimately, to eradicate this cruel disease. In my practical way, I contribute, through donations and the raising of awareness about ALS. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases.

ALS,Grief

I always picture Ben like this, in his chair at his desk.

Happy and Hopeful Independence Day.

Walt Disney World
July 2014

 

 

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