caregiver

July 22, 2018

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

abby_admin ALS, Caregiver, Caregiving, Disney, Uncategorized ALS, caregiver, caregiving, Disney, Dory, Nemo 0 Comments

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.

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

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

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

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

April 15, 2018

Wisdom From Olaf About Caregiving and Love

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, caregiver, caregiving, Disney, Frozen, grief, Lou Gehrig's disease, Olaf 0 Comments

Olaf had to come home with me!

I recently attended Frozen, the new Disney musical on Broadway. Frozen certainly became a phenomenon among Disney films. The Broadway version does not disappoint. It is magical, wonderful and beautiful to watch, with clever surprises along the way. I would love to have seen it with Ben. I have loved going to the theater since I was a child, but Ben had never been to a Broadway show until he met me. He came to love shows and when I went through his things after he left this world, I was truly touched to see that he kept all of the Playbills and ticket stubs from the many shows we saw together. It has taken me a while to truly love going to the theater again, because I went through feelings of guilt for claiming the freedom to participate in things like theater, which I could not enjoy when I was caregiving, and I simply missed going with Ben. But, now I again find great comfort, delight and inspiration from going to the theater. I do notice that I often look at productions through Ben’s eyes. I imagine what he would think, what I would say to him, what inside jokes would be triggered. It’s what I need to do, at least for now.

Frozen has romance, royalty, family strife, tested loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?! Seeing the show triggered that when I saw the film, it struck several chords for me as a caregiver, and I am using images from the film in this post.

Of course, Let it Go has become an anthem for finding all kinds of strength. I know that it is healthier, and I feel better, when I can let go of anger, of bad memories, and of resentment. When I was caregiving and in grief there was a lot of that, for many reasons. I must admit that letting go, in general, is not always easy for me. I have found, however, that it is better to put my energy towards gaining perspective that allows me to let go of the things that are over and done, that I did not create and that I cannot change.

For me, it is Olaf, the sweet and goofy snowman who so beautifully summed up my caregiving experience at its core, when he pointed out to Anna that, “Love is putting someone else’s needs before yours.”

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

We all know that we have to take care of ourselves. We have also heard that if we don’t take care of ourselves we will not be able to take care of someone else. After all, if we don’t take care of ourselves, we might become ill and will then be incapable of caring for someone else. I cannot tell you how many times I was told the airplane analogy of putting on your own mask first, so you could then help someone else. And yet, as caregivers, we do not always take care of ourselves. In fact, we rarely take care of ourselves. Hearing that advice became irritating because I knew that I should take better care of myself, but I also knew that I couldn’t. Why? Crises occurred, I was exhausted, there was not enough time, and the list goes on. Ultimately, love meant putting the needs of my dad and Ben first.

When my dad and Ben were ill and needed help, their needs were immediate. They had terminal illnesses. If my dad needed to go to the Emergency Room or if Ben needed to shift his position in bed or needed to use the commode, it didn’t matter that I needed sleep to be able to function at work or if my back hurt. I would find a way to catch up on sleep. I would go to physical therapy or take a pain reliever. Their needs could not be postponed.

I’ve written about the stresses and emotions of caregiving. I’ve explained that my loved ones were very concerned about me because I was running in circles, particularly when I was simultaneously caring for my dad and for Ben. It was my routine, my normal, and I just went with it. I do remember that during the time I took family leave, I enjoyed my time on the train, on the way to and from the hospice, because for those 5 hours every day, I was by myself, even though it was with phone in hand to manage any issues that arose during my commute. Enjoying my thermos of tea on the train while listening to music became my way of taking care of myself.

I don’t think that I realized at the time that I did not really have an opportunity to deeply feel the grief of losing my dad. I was taking care of Ben, who was also struggling with this loss because he loved my dad. Also, the death of my dad was a scary and sobering reality check for Ben, who lived in denial of that eventuality. For me, it was one step in the sad forecast of my lonely future. I couldn’t grieve with Ben because I did not want to upset him, but I also could not grieve on my own, because there was too much to do and I was working full-time. At times, I did feel like I was melting down, but I did not see any options, and I was so immersed in handling my caregiving tasks and full-time teaching that I just kept plodding along, with a few pity parties and venting to friends and family in conversations or emails and texts. Sometimes that was a distraction from the grief, but it also meant that the grief simmered within me.

I have to explain that although there were times when putting my own needs aside was the obvious and the only solution, it also caused frustration, sadness and anger. I felt depressed and lonely and frightened, and Ben and I were not always patient with each other, which led to resentments on both of our sides. Unfortunately, although I recognized that I was near a breaking point, I could not convince myself to shift my priorities in a way that changed my routines and accommodated my needs. I write this because saying that love is putting someone else’s needs first does not mean it is always done easily, graciously or without inner conflict. Everyone’s feelings matter, but they have to be prioritized. Even in retrospect, despite what reason may have indicated, my heart knows that it was the right and only thing to do.

“Some people are worth melting for.”- Olaf

Olaf was so right when he said that, “Some people are worth melting for.” While putting my dad’s and Ben’s needs first sometimes caused some melting, it was in the literal letting go of them that I truly melted. But, love meant supporting their wishes.

I did not like to see my dad in a hospice, although he got such wonderful, compassionate care. I melted as I saw him slipping away, but letting him go as he wanted, and very peacefully, was more important than my desire to keep him with me on this earth.

Love meant dealing with the fact that Ben would have gone to a facility if he had chosen to stay on life support. With a tracheostomy and feeding tube, Ben would have needed 24/7 nursing care that could not be accomplished at home. It was a bleak option, but his needs were the priority and as much as it devastated me to think of him in a facility, and it devastated him to accept that he would not be able to be at home with me, we both had to come to terms with that reality. I worried about his being alone while I was at work. I worried that the staff would not be as attentive as I had been. I did not share those worries with him, but I melted when I thought about it.

When Ben decided to go off life support, I melted because I did not want to lose him. I stood by his decision to go off life support because only he could decide how to live and die with ALS. It was a conflict for me because although I was not prepared to lose him, I was relieved that he would no longer suffer with the disease. I was at his side the day he left, we said our vows, and he was surrounded by loved ones and music. It was worth my melting for him to feel loved and comforted as he left this world on his own terms.

I loved my dad and Ben with all my heart. Losing them, particularly so close in time (a year and a half), was very difficult. But, it was worth melting to have shared the love that we did and to let them go and find peace on their terms.

I would like to state the obvious and suggest to caregivers who are reading this that you take care of yourselves and put yourselves first. But, we all know that won’t always happen. Maybe sometimes. Try. Plan. Fantasize! Taking care of yourself does not have to be big events. Take moments for yourself, even if it is a mental escape, or a nap, or a quiet cup of coffee or tea on your way to an appointment! The thing is that, as caregivers, just like Olaf, you know and are experiencing and demonstrating the true meaning of love.

Walt Disney World’s Hollywood Studios (July 2014)

October 31, 2017

Memories, Perspective and Disney Halloween Magic

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, caregiver, caregiving, Disney, grief, Memories, Walt Disney World 0 Comments

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Winnie the Pooh

2012- Mickey’s Not So Scary Halloween Party. Ben took center stage in the scooter!

My third Halloween without Ben. Though it is not traditionally a romantic holiday, for me it is, because it is the day that Ben proposed to me at Walt Disney World. I still have not been able to decorate with our Disney Halloween decorations. As I watched the little kids going to school in their costumes, I remembered how much Ben and I loved to see the cute children at Walt Disney World. I know that if he was still here, that I would have returned home to find him watching our Walt Disney World Halloween videos, bopping his head to the music and saying “Boo to You!” as they say in the parade. We would have looked at the photos and videos together and laughed at the memories while we fantasized about a new visit. Even when the ALS was progressing, Ben constantly went on the Walt Disney World web site to plan fantasy holidays. Frankly, I think it was healthy and helpful to him to stay hopeful and engaged in life. It’s hitting me hard that although I am so grateful to have the wonderful memories, I am saddened, and feeling a little lost, that I can no longer look forward to Halloween Disney adventures with Ben. That’s a tough part of grief. As I feel like the sharp pangs lessen a bit, the day to day realities, and thoughts of an unknown future, unexpectedly set me back.

One of my favorite memories, though bittersweet. After his ALS diagnosis, Ben was reluctant to meet Buzz, because he said Buzz was a super hero and he was weak. When he did decide to greet him, Buzz made such a fuss about Ben’s Buzz shirt (his Halloween costume) and Ben loved it. It gives me comfort and joy to remember Ben’s delight.

Every day my commuting routine is to listen to a special play list of special “Ben” songs. This morning, after those songs, I listened to the Walt Disney World “Hallowishes” parade music- Ben loved it even more than I did. The music did not comfort me. Although I love to picture Ben’s face watching that parade and saying “Boo to You!” I still grapple with the fact that we will never again enjoy those moments together. I wonder if I will ever want or be able to see it again. And maybe it’s okay if I never do. Maybe those were special moments that were just ours. On the other hand, maybe one day I will want to return to Mickey’s Not So Scary Halloween. That will be okay, too, because Ben will always be in my heart. He will always be present, just in a different way. Unfortunately, on a day like Halloween, it is not quite enough. I need some pixie dust or some bibbidi bobbidi boo!

This year, I baked Halloween cookies. Baking and decorating cookies is almost meditative for me.I call it my therapy. It also keeps my grandma close, since she taught me my great-grandma’s recipe, and it keeps Ben close, because he is the biggest part of any Halloween tradition and he loved when I baked cookies, teasing me about my elaborate processes. On the ghosty-ghosts (what we always called ghosts) I wrote “Boo to You!” because I know Ben would have loved that, so it gave him a sweet, special presence in the holiday that is uniquely ours. I need that.

Halloween cookies honor Ben and involve him in the holiday.

Now, I feel like a Halloween observer rather than a participant. Maybe it won’t always feel that way, but I do feel terribly lonely, and out of place. When it comes to Halloween, I’m only at home in the memories, so I will delve into those this evening as I look at our photos and videos.

As I think about the holiday this year, and reflect on my Halloweens with Ben, I realize that my post from last year still rings as true this year, and give me a positive perspective, so here are my words and memories of our most magical Halloween ever, at Walt Disney World- IN JULY!

Meeting Monsters Inc Sully and Mike. Ben LOVED Sully!

Halloween was the most fun holiday for Ben and me, especially when we were at Walt Disney World for Mickey’s Not-So-Scary Halloween Party. Halloween is extra special for me because Ben proposed to me at Walt Disney World on Halloween. It was very exciting and, of course, I told all of my Disney buddies! Ben never tired of teasing me about my ability to talk to all of my friends. Why wouldn’t I?!

There are so many videos and photos of our amazing times, but, of all of the fun Disney times we had, I think that a most poignant memory was the Halloween celebration we had back in July 2014. That’s right, July. This was a very special trip, because I think that Ben and I both knew that it would likely be our last visit to Walt Disney World, as Ben’s ALS was progressing more rapidly. I wanted it to be a most incredible trip with lots of surprises.

Traveling to Walt Disney World was stressful but Ben really did have an amazing attitude. I will write some of the details to give an idea of considerations that have to be made when dealing with ALS and other disabilities. I think it was a combination of realism, naivete, determination and pixie dust that enabled me to make these plans! First, we needed to bring another caregiver. I was advised by Ben’s doctors and the ALS team that I should not do this alone. Ben wasn’t happy about it, since another person did change the dynamic, but he had to relent and I had to be strong, since I was nervous about how much assistance he required. Getting to the airport was a bit complicated, since Ben was pretty much homebound at this point. I had to hire an ambulette service to get him down the stairs and safely to the airport. I contacted JetBlue, which was great each time we flew, before and after Ben’s diagnosis. They helped me to choose seats and let me know exactly what to do when we arrived at the airport. We were taken through security with relative ease and he was literally lifted and placed into his seat by a very kind and accommodating crew, one of whom revealed to me through tears that his brother had ALS. Ben was calm and in good spirits, while I was a smiling nervous wreck!

Disney’s Guest Services Department was very helpful and supportive when choosing a room, coordinating transportation to the hotel with a bus that had a wheelchair lift, and arranging for the electric wheelchair to meet us at the hotel. They even put me in touch with a local pharmacy that delivered Ben’s nutrition supplement to the hotel. It was waiting for us when we arrived! We had a room with a roll-in shower, which was such a treat for Ben. We take a lot for granted in life, don’t we?

Ben even had fun on the Magic Express wheelchair lift!

This was going to be a very different trip because so much about Ben’s physical abilities had changed. Ben wouldn’t be able to go on his favorite rides, Pirates of the Caribbean and the Haunted Mansion. Eating was also a big challenge. Because of these obstacles, I wanted to arrange surprises for Ben that would be fun and unusual. Ben knew I had surprises in store, but he didn’t know what I had planned.

Disney has a wonderful Floral and Gift Department (click here to visit the site) that offers a variety of gift packages that can be delivered to your hotel room. They had a Halloween package but it was available during the Halloween season. I called and explained our situation, making a special request for a Halloween hotel room even though it was July. Disney is about magic and dreams come true, and they did not disappoint! When we arrived at our room, outside was a banner that said “Spooktacular Halloween July 2014!” It had a pumpkin with blinking lights. Ben thought it was a promotion for Mickey’s Halloween Party, but he still got excited. When we opened the door, the room was like a little Haunted Mansion and Ben was completely shocked, thrilled and emotional. I thought that if a full day at the parks was difficult, the room would also look very cool, and indeed, it did, but Ben did great at the parks! I was the one having a hard time keeping up with his zipping around in the electric wheelchair!

Since we were bringing Ensure to the parks in case eating was a problem, I had also ordered from the Gift and Floral Department an insulated backpack with some goodies. Also, we were joined by a giant walking Buzz Lightyear balloon. Here are pictures of some of the magic.

Ben was excited just to see the banner! He had no idea what awaited him inside!

Mickey Mouse and Minnie Mouse all dressed up for Halloween in July!

Treat baskets in our room, and a projectable haunted house that shone a haunted house on our ceiling!

The candelabra in our haunted hotel room!

Our hotel room was very fun!

I learned that there was a Pirates and Pals Fireworks Cruise with a party where you could meet Captain Hook and Mr. Smee. When I found out that the boat was accessible, I had my next surprise for Ben! The day of the cruise, I gave him as a hint a little pirate coin I’d found at one of the gift shops. His first guess was that I’d arranged for him to go on Pirates of the Caribbean, which, sadly, I couldn’t do. We took the monorail (also accessible) to the Contemporary Hotel, where the party began. Ben laughed when he saw the really great pirate-themed decorations. We were given bandanas, too. One of the truly brilliant aspects of the Disney team is that they never make someone with disabilities feel uncomfortable. A cast member came and escorted us with no fuss on an accessible path to our boat. The cruise was so much fun, the fireworks looked magnificent from the water, and, as a surprise, Peter Pan was on the dock to greet us when we returned! OK, so I was more excited than some of the children! There were tears and there was joy as we listened to the “Wishes” fireworks lyrics, but watching the delight on Ben’s face is something I will never forget.

Walt Disney World, Pirates,Fireworks,ALS,Halloween

At the Pirates and Pals Fireworks Cruise Party with Captain Hook and Mr. Smee.

Ben loving the Pirates & Pals Fireworks Cruise.

Ben had not had a proper haircut in a few months, so I arranged for him to have a haircut and shave at the Main Street Barbershop. He was a little bit apprehensive, but, as I’ve said, he had such a great attitude, and he ended up having a great time. The staff accommodated his electric wheelchair and made him completely comfortable. Outside of the barbershop he met up with the Dapper Dans, the singing quartet he loved.

Ben got a kick out of getting his hair cut on Main Street, especially because it was decorated like an old fashioned barber shop.

The Dapper Dans were very cool! Ben always loved them.

We loved our usual attractions, and Ben loved the new Little Mermaid attraction, where his wheelchair could go right into the clamshell. Of course, we were happy to see our friends.

Buzz was one of Ben’s heroes, but he loved Woody and friends, too!

We visited the Wishing Well at Cinderella’s Castle, which was emotional. We also became overwhelmed when we met Mickey and Minnie at Epcot. Maybe it’s silly, but when dealing with something like ALS, you just want to believe in magic, or something, that will make things better. People sometimes ask me how I can believe in Disney magic, or that dreams come true. I just do, even when it’s difficult. After all, Ben did okay with ALS for about 4 years, and we were fortunate to be able to travel to Walt Disney World many times, even after his diagnosis. We shared a lot of love and wonderful memories that he relived daily as he looked at our many photos and videos. We even had Halloween in July! And, he left this world surrounded by music, love and even Disney. Maybe it’s a matter of perspective, but I feel the pixie dust.

At the Walt Disney World Wishing Well at Cinderella’s Castle

Happy Not-So-Scary Halloween!

September 1, 2017

More Than “Just Keep Swimming”- Wisdom for Caregivers from Dory and Hank

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, caregiver, caregiving, Cats, Disney 3 Comments

Brave Disney during her hospital stay.

I have written before that although I lost myself when I was caregiving, I also found myself in caregiving. I might have fought it when things were difficult or devastating, but I also learned to embrace the beauty of caregiving and to recognize the strength that I do possess when I am in the role of caregiver. I have lost my dad and Ben, but my role continues and it is a perfectly imperfect fit. That became especially clear to me over the past few days, while caring for my ailing cat, Disney.

Disney is almost sweet 16, and sweet she is. She is the most gentle, loving girl, and a little bit of a spoiled brat, but as Ben would say, I created that monster. She’s got a lot of medical issues- diabetes, thyroid, arthritis, heart murmur. With each diagnosis or complication, I’ve channeled my inner Dory and I “just keep swimming.”

Disney was originally diagnosed with a thyroid problem and diabetes just two weeks after Ben passed away, and the news sent me reeling but I was not going to let the undertow drown me. I was told that I would manage her condition by administering injections of insulin twice a day. I am a squeamish person and this had me terribly nervous. But, I reminded myself of all the very ugly and messy things I had to do for my dad and for Ben. “You are braver than you believe, stronger than you seem, and smarter than you think.” Yes, and thank you, Christopher Robin, I am. Disney is a wonderful patient, and she makes things pretty easy. She has begun to eat the pill pocket containing her thyroid medication, leaving the pill visibly displayed for me, showing that I have not outsmarted her. But, as her caregiver, I have to ensure that she gets what she needs.

A couple of days ago I took Disney to the veterinarian for a follow-up visit, pointing out that she was not eating as well as usual. The vet suspected some kidney damage and an infection. Her blood sugar was also very low. She stayed in the hospital overnight for glucose infusions and monitoring. Then, it was determined that she should have an ultrasound. I was able to visit her during her two night stay, and when I was with her she curled up against me and closed her eyes, because all is well in Disney’s world when her mommy is with her. I love the quiet, sweet moments when I know that I am comforting her.

Visiting hours for Disney.

We were sent home with new medications, including one to be given with a syringe, and fluids to be administered under her skin with what looks like an IV drip. I think her vet thought I would pass out or break down as I wrote down all the notes and when I saw the set-up. As Dory says, “You can do whatever you put your mind to.”

When we got home and before we went to sleep she was not acting right. She had two accidents on the bed, which I attributed to the infection. But, she was extremely lethargic and wobbly. Then, she had what turned out to be a seizure. I held her in my arms and she calmed down. After another similar episode, I decided that I had to call the Emergency Room at around 4:30AM. The doctor asked several questions and heard Disney’s distress meow, and said that I should get her to the ER. I sat and waited for a report, as I had done so many times with my dad and Ben. I felt that same exhaustion and worry. And, I realized that although I was distraught, I only wanted to care for and console this little girl whom I love so much. I am most comfortable in the role of caregiver. It is who I am.

It turned out that Disney’s blood sugar was super low, and had I not taken her to the ER, she might even have died. I am still having trouble wrapping my head around that. She was kept in the hospital for several hours for monitoring while they intravenously administered dextrose. She perked up and was doing much better, so I was allowed to bring her home. We are adjusting her insulin dosages but I must carefully watch her behavior and reactions. As I cancelled my weekend plans with friends to be with her, I had flashbacks of the many plans I had to cancel or postpone due to issues with my dad and Ben. Of course, there were times I was very disappointed about not going out, but caregiving was my priority and, at the time, because of so many conflicting emotions and so much chaos, I don’t think I even realized that I took pride in being the person they trusted and on whom they depended. It is only in retrospect that I began to realize that it was through caregiving that I really knew who I was and what I was meant to do. Now, I know that Disney will feel better if I am home with her and I love that I make her feel better and that I will be able to give the vet necessary information to inform the treatment plan as we move forward.

I was afraid to go to sleep last night for fear that something would happen. Eventually, we both fell asleep. I awoke to her on the bed staring at me. She did not want to eat much of her breakfast, which has me concerned, but I will be in touch with her veterinarian. She definitely was not thrilled with all of the medications, but was very cooperative. She has been very cuddly and purring a lot, which is a good sign. As I’m writing this I am smiling, because although this is stressful, it is the normal with which I am most comfortable. This is who I am. And, for the first time, I’m feeling proud of it. Like Hank, I’m OK with crazy!

I admit that I am terrified of losing Disney. Intellectually, I know that she has health concerns, and that she is a senior cat. Emotionally, she is just such a lovely cat and she has been there for me as I cared for and lost my dad and then Ben. At my loneliest, most frightened and most inconsolable, she was there with cuddles. She is the cuddliest cat I’ve ever met. People who don’t love animals don’t understand. People like me, who love our pets, don’t understand people who don’t understand the love we feel for our furbabies. But, I was raised in a family that unquestionably valued our dogs as family members. My dad loved my cats, too, though he did unabashedly compare them to our Schnauzers! Some people might take offense at my comparing caregiving for Disney to that of my dad and Ben. I can tell you that my dad would have had it no other way and he would be flattered. Ben would completely understand and he, too, would be flattered. The bond that is felt when caring for someone you love, human or otherwise, is profound and priceless, despite the difficulties.

I summoned the courage to ask the vet if she felt that I should brace myself for losing Disney soon. Thankfully, she said that we do not yet have to make that decision. But, she said that with all of Disney’s health issues, it is a challenge to manage all of her conditions. It is a lot of medication, additional vet visits and always the risk of ER visits. This is a big financial and emotional expense and challenge. In my mind, if she has a good quality of life and just needs management of her conditions, I am up for the task. Disney has always risen to the occasion of comforting me and giving me joy and laughter. She did that for Ben, too. She was definitely affected by the way he changed as a result of ALS and in her own way, she was protective of him. When he was in the hospice in his last days, I was allowed to bring her to visit him. At first, she didn’t like being on the bed with him because her arthritis renders her uncomfortable at times. She sat on the chair next to him and intently watched him. At one point he asked me to lift her and put his hand on her. When I put her on my lap to bring her closer, she pulled herself onto the bed and curled up on him. I put his hands on her and she turned on her side. They both closed their eyes. I believe that in that moment they said their good-byes. It was beautiful. For me, Disney represents a very close remaining connection to Ben. I’m sharing a photo of them in the hospice. I generally don’t share these personal photos, because they are difficult memories and private, but I do think that it is important for people to see the realities of disease.

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

I will never be selfish and prioritize my desire to keep Disney with me over her quality of life. But, once again, I am lovingly, proudly and purposefully, though sadly, in the position of caregiver, and I will do whatever I can to give her a good quality of life and a lot of love, as she did for my dad, Ben and me.

Disney thanks everyone for their well wishes while she recuperates.

August 26, 2017

Two Years

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, caregiver, caregiving, grief 8 Comments

Today marks two years since Ben left this world. I don’t know if it feels like a longer or shorter time. I guess both, depending on what moment I’m in. I’ve spent the past few days thinking about what to write and how I’m feeling. These are hard days filled with tears that flow easily. In my mind, it’s perfectly okay to have a few sad days. In a way, the tears are reminders that I was fortunate enough to have had a beautiful love that I miss so profoundly. But, it’s sad nonetheless.

A year ago, I posted this video, and I am posting it again because I love these memories of Ben and I love people to remember him alive and vibrant. He loved those photos, too. And, “In My Life” was his favorite Beatles song. It was played for him by a lovely guitarist named Todd on the day he left.

I know for sure that Ben has not left me. As Mrs. Frankenstein says, he has moved into a special place in my heart. I often feel him with me. I still talk to him. That does not make sense to everyone and that’s okay. It seems to me that the best thing that I can do is try to honor him in my actions. Sometimes I buy things, listen to music or watch movies because they let me get lost in thoughts of him, and in those moments I see him smiling. Sometimes this gives me comfort and at other times it is a painful reminder that he is not here. Sometimes I do need a good cry.

In facing this second anniversary, I took time to reflect on the past year and where I am compared to last year. Firsts are hard, and in that first year without him, every first occasion hurt in a very raw way. I labored through that first year, often just going through motions. Although I slowly ventured out and saw friends and participated in activities, I often returned home in tears because it took so much energy to act cheerful, and if I was at all enjoying myself, I felt guilty and overwhelmed, or almost confused by, the conflicting emotions. Blogging helped me find purpose and revisiting the Disney films I love so much helped me to focus, as I looked for messages and guidance and opportunities to gain insight into my experiences.

The fact was that although my dad died a year and a half before Ben, since I was so busy as Ben’s caregiver, I did not have the time to really grieve that loss. When I lost Ben and I no longer had caregiving responsibilities, I was able to truly grieve, but it was for the loss of both of them. It was also the loss of what had become my definition of myself as a caregiver.

In this second year, I still profoundly felt Ben’s absence, and yet, I have found that he is always present. I had to establish a new normal. I would say that this year was spent integrating my caregiving experiences and grief with rediscovering myself and redefining my life. I have made changes, particularly to my apartment, and I’ve documented those in this blog. The changes have not come easy, but Ben has been a part of the choices I’ve made. And, there are some things that I cannot let go, which was why I got so upset when his computer crashed and insisted on restoring his music library on his desktop computer with his speaker, and why I have continued to use his desk chair/wheelchair although it is not in great shape and I have new and beautiful Mickey Mouse chairs that he would love.

I admit that I dreaded this day and have been very emotional even thinking about this blog post. In general, although I have not forgotten the scary and devastating times, I prefer to summon the fun and loving ones. Unfortunately, summer, and these few days in particular, are spent reliving Ben’s last days, with hospital and hospice memories. There was a lot of love, but there was ultimately loss. I can’t seem to stop replaying the scenes in my mind. I’m trying to embrace the sadness as part of the process of grieving and as a quiet time to think about Ben and about us, and how much I miss him. I give myself permission to be emotional.

Last week, I did have a wonderful distraction, traveling to Chicago and visiting my dear college friend, Monica, whom I hadn’t seen in many years. She named one of her daughters Abby and I’d never met my adorable namesake, her adorable sister, Andi, or even her husband, Mike. Caregiving certainly kept me from going anywhere, but I’d lost touch with so many people I cared about. Catching up with Monica and meeting her family was a most special time and the happiest I’ve been in a long time. Spending time with good friends, being with kids, laughing and exploring are fun and treasured moments for me. Monica wanted to know about Ben, and it felt good and important to talk about him and our relationship in the good times and the bad times. Ben knew how important my friends were to me, and he would have loved Monica’s family and seeing me with them. He also would have enjoyed Chicago, and although it was sad that he was not actually there, I delighted in the Shedd Aquarium and the architecture, and especially The Bean, through his eyes. Yes, it brought some tears, but it also brought comfort. I can keep living and honor and carry Ben with me all the time.

The Bean sculpture in Millennium Park. It was probably the most sentimental place we visited, since Ben’s nickname was Mr. Bean.

Abby 2.0, my namesake, Monica and I taking our picture off of the reflection from The Bean!

Watching the historic solar eclipse with Andi and Monica. Ben, the science and documentary lover, would have relished this moment.

I learned a lot about myself over the past year. In Walt Disney Pictures’ Alice in Wonderland, Alice said, “I can’t go back to yesterday, because I was a different person then.” Caregiving and watching Ben battle ALS changed me. I felt and expressed love and compassion in such deep and immeasurable ways. I came to recognize a strength and bravery in myself that I still have trouble acknowledging, but I do know they are there. I found myself in caregiving and I want to support other caregivers whenever possible. I’m redefining my life with things that make me feel happy, satisfied and useful. I am not quite there, and I have my setbacks, but I am on my way, and I know that Ben is with me on my journey.

I don’t know what the next year will bring. I do know that I will take Ben with me in that special place in my heart.

I’m thinking of you today, my dear and silly Ben, as I do every day, free from the constraints of ALS and walking, talking, eating and playing your music. I love you.

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

1 2 3 4 5 >»