ALS

What Mary Poppins Knows About Where Lost Things Go

Walt Disney World, Mary Poppins, Grief, ALS

Ben and my second visit to Walt Disney World, 2002

I recently wrote about a song in the new Mary Poppins Returns (click to read). The DVD was just released and I have watched it more than once! I always look to Disney films to enlighten my experience, whether it was during caregiving, the depths of grief, or now, as I have re-entered life. Mary Poppins has been a favorite character since I was a child and she continues to captivate me. This new film is not a remake, which is probably a good thing, because the original was a spectacular entity unto itself which could never be recreated or duplicated. This new film is a treasure in a different way, with messages that resonated for me about love and loss.

Here are some of the poignant quotes and conversations that touched my heart and reaffirmed my belief that the people I have lost and whom I miss so dearly are here with me.

You can’t lose what you’ve never lost.- Mary Poppins

Annabel, John and Georgie Banks were lamenting the loss of their mom, fearing that the loss of their home would take her farther away. Michael Banks (their dad, and all grown up from the original) also dreaded the possibility of losing their home because his wife, their mother was so present there.

Listening to the children, Mary Poppins is sympathetic, but she points out that, “You can’t lose what you’ve never lost.” Seems odd, since, indeed, they lost their mom. She goes on to sing a beautiful song that I included on the previous post but am reposting here. It includes these lyrics:


The Place Where Lost Things Go
Composer: Marc Shaiman
Lyrics: Scott Wittman
Performed by Emily Blunt (Mary Poppins)

Time to close your eyes
So sleep can come around
For when you dream you’ll find
All that’s lost is found
Maybe on the moon
Or maybe somewhere new
Maybe all you’re missing lives inside of you
So when you need her touch and loving gaze
Gone but not forgotten is the perfect phrase
Smiling from a star that she makes glow
Trust she’s always there
Watching as you grow
Find her in the place where the lost things go.

In a recent post I wrote of a dream I had with Ben. I wish that I remembered my dreams better, but even if I don’t, I’m sure that my loved ones pop into my dreams and send me little messages. I see my parents, my grandma and Ben in so much of who I am, what I do and how I live my life. They are inside of me and have helped to shape me. I’m fortunate to have many good memories, and I have gained the ability to put the bad memories in perspective, as part of what made our entire relationships. In the film, the children are in their first year of grief. And, they are children, and as such, were so dependent on their mom, which made the loss and ability to find perspective, that much more difficult. Mary Poppins did try to comfort them, but her song also shows that she also listened to them and opened the way for discussion, which was something that they did not get from their father. He was not ready. That is a difficult dynamic, though common within a family where each person grieves differently and parents juggle their own grief and parenting. Of course, Mary Poppins helps Michael, too, which is why she is, indeed “practically perfect in every way!”

I do believe that my loved ones are watching me and are always with me. Our relationship is different now, but I suppose that, as Mary Poppins says, they are “gone but not forgotten.” I can still feel and connect with them even though they are now in the place where the lost things go. I hope that they are happy there, but I think it’s okay that I will always miss them here.

Your mother’s not gone. She’s in your smile, and your walk, John, and Annabel’s eyes. She’ll always be with us wherever we go.” – Michael Banks

There is a touching song at the beginning of the film where Michael Banks (yes, all grown up and with his own children) is looking through his deceased wife’s jewelry box and talking to her about missing her advice about ways to take care of the children. He has so many questions about how to talk to his children because she always seemed to know what to say to them and how to care for them. Michael struggles with losing the family’s house because he feels his wife is so present there. As he begins to fall apart in front of his children, they remind him that “nothing is lost, it’s only out of place.” As the children help Michael come to terms with this additional loss, he realizes that his wife remains present in the children and her spirit will not disappear with the house. I love when people tell me that they see my mom and dad in me. Just the other day, a friend said that she saw so much of my aunt Eleanor in me, and I see that, too. To this day, I have a hard time when I see that restaurants and shops that I visited with my mom or Ben have closed. It feels like I have lost the tangible evidence of our memories, taking them further and further away. I sometimes need to remind myself that I carry all of those memories and the relationships within them in my heart, and by sharing them, I pass them along.

“Some people think a great deal too much. Of that I’m certain.”- Mary Poppins

Mary Poppins says this to Michael as he is lamenting how he’s dealt with his children and the grief that they are all feeling, as well as how to solve his issue with his house. I think that we all overthink matters at certain times. Sometimes, as the song lyrics say, we must trust that our loved ones are there. There are moments when we have to listen to and follow our hearts. We can take a clinical or textbook approach to caregiving, grief, or life in general, and we can read all of the self-help books we can find, but we each find our own way to navigate our experiences. Sometimes the answers lie within us. We cannot always think things through and write a neat and clean plan. Life throws us curve balls. If we follow a sad road for a time, I think that’s okay. After all, grief is not a happy time and healing cannot be forced. That said, we should try to be attuned to our emotions and consider support groups and professional help if the feelings are overwhelming or troubling.

The truth, for me, is that having come out the other side of intense grief, I do see and feel all of this and understand how my loved ones were with me. But, in the depths of grief, sometimes I haven’t wanted to hear a “bright side” or a positive spin. Just as the Banks children needed to express that they missed their mom, and to be heard and validated, there have been times when I simply wanted to know that someone was listening to and understanding my sadness for what it is. There have been times when it has been so clear that people do this for their own comfort, whether it is because they are uneasy or impatient around tears or because they believe that “enough” time has passed for grief or because, with all good intentions, they just want me to feel better. Cheering up isn’t always the answer. Healing does happen, but it happens in its own timeframe. I’m proof of that, and also of the fact that there are ebbs and flows in grief and sadness or tears will happen forever. It means we loved and were loved, and that is a good thing.

 

Is A Dream A Wish Your Heart Makes?

At the Walt Disney World Wishing Well at Cinderella’s Castle- Making a wish!

I’m a dreamer. Disney always lets us believe that dreams come true. Cinderella, my first favorite princess, said “they can’t stop me from dreaming,” and she sang “a dream is a wish your heart makes.” In Pinocchio, we are taught that “when you wish upon a star your dreams come true.”

So, when I woke up on a recent morning, upset by an actual dream I’d had, I began to wonder about dreams. Are they a reflection of what I wish for? Are they the resurfacing of bad memories I only convinced myself that I had happily put in the recesses of my brain? Maybe both?

Truth be told, I rarely remember my dreams. I do know that at times, when I’m having a bad dream, in the dream I tell myself to wake up. When I awoke from this particular dream, I remembered a lot of details. In this dream I revisited a lot of the issues that arose during my 16-year relationship with Ben. I again experienced the anger and aggravation that I did during our more challenging times. During the dream, I saw Ben curled up and crying with apologies and regrets. I calmly talked through the issues with him and comforted him. I talked to him honestly and openly and he listened and really heard me. In this dream, I got to a point where I could express that I accepted our entire relationship, good and bad, and I told Ben that I loved him, which was something he always knew anyway. I left the dream with him reassuring me of how much he loves me.

It bothered me that Ben was so upset. It also bothered me to revisit the difficult issues. Was my heart wishing for this dream? I couldn’t imagine how. It’s been gnawing at me and it has had me in tears.

I suppose that every relationship has its imperfections. However, when Ben was in the hospital and he knew his time in this world was limited, we had a special opportunity to resolve a great deal of the rough feelings. We even said our vows on the morning that he departed. I am not as naïve as my love of Disney would imply to some. I believe that I have a realistic memory and perspective of our relationship and, although I choose to focus on the wonderful aspects of my time with Ben, I also acknowledge the aspects that were difficult. After all, if I can’t do that, I am not doing justice to our time together and the love that lasted in good and bad times. But, why was I revisiting the bad times, seeing Ben so distraught and full of regret? Why was I talking through everything with him without just placating him? I felt like this dream must have been sending a message.

In my dream, Ben’s children ignored and dismissed me as they did throughout our relationship and his battle with ALS. For many months, I have been troubled by the only one of his daughters with whom I had a brief good connection at the end and for the first two years after Ben died, because, without any explanation or any kind of falling out, she began to ignore me and not respond to my texts. I have been feeling hurt and confused, because we had spent milestone events together, such as his birthday, the anniversary of his passing. I tried to be supportive and arrange activities that would honor Ben and that we could enjoy as we remembered him. Actually, for most of the time that Ben was ill, we did not have a strong relationship, so I suppose things just returned to their original status. In my dream, I matter-of-factly said good-bye and confidently walked away from her.

Dreams are such a matter of interpretation. In this case, I have come up with an interpretation that works for me. I recently marked three and a half years since Ben left this world. Those kinds of milestones always bring back a lot of memories- the good times and the illness, and, of course, his last day. While I get caught up in those memories, I have also stepped back into the land of the living. I am even trying to find love again. Interacting with people online, and writing dating profiles allows the opportunity to look at the beautiful and not so beautiful aspects of my relationship with Ben. I feel like I know what I am looking for and that I am ready to be in a relationship. Maybe this dream was showing me that indeed, I am able to look back honestly at my relationship with Ben, and to know that those issues are resolved. I can enter into another loving relationship and work through any issues that arise.

I do believe that Ben is with me. I have gone to a medium who has confirmed that. I realize that many people do not believe this as I do. Maybe Ben entered my dream so that we could talk through things and he would know that I still love him and am connected to him but can also move to a new relationship with an open and loving heart. Maybe we worked through things so he could peacefully let me step forward.  Maybe my heart wished for the opportunity to talk with him about our relationship to reinforce in my heart and mind that we will always have a relationship, but it is now different.

As for the daughter who has cut off communication with me, in my dream, Ben watched as I confidently walked away from her. It made me feel like I have his support. This dream allowed me to let go of the anger, confusion and frustration that I have been feeling, knowing in my heart that I did everything that Ben would have wanted me to do, serving as the connection that she herself said she needed and wanted because her immediate family was not expressing much in the way of grieving Ben’s passing. This dream has empowered me to stop worrying and wondering and to sever the notion that I ever actually had any relationship with his immediate family. I gave and they took. For the most part, Ben had the same relationship with them.

Maybe it was just a dream conjured by the many memories swirling in my conscious and subconscious around the anniversary of his passing. On the other hand, although it upset me, maybe this dream was the wish that my heart has been making to talk to Ben, let go of the difficult times, feel heard and listened to, feel his love and permission to find love again and know that I am able and willing to once again enter into a healthy and happy relationship. Cinderella did say, No matter how your heart is grieving, if you keep on believing, the dream that you wish will come true.” No wonder she remains my favorite princess.

Grief and Wondering “Where Lost Things Go”

Disney, when she was “Miss February” in the Bideawee calendar in 2011

On Thursday, February 7, I had to let my sweet cat Disney go to be with Ben and my dad. She was a brave and strong little girl. At 17 years old, she had so much wrong with her- thyroid, diabetes, severe arthritis and cancer, and so many daily medications/injections/infusions, but she fought and stayed so loving and cuddly. On that evening, she kept falling over and then standing still, frozen and clearly scared, and she was also severely congested. She was miserable. I called the vet in a panic and they told us to come in. Turned out that she had a respiratory infection, and I could have left her overnight for an infusion of IV antibiotics to treat the infection, but her legs were not going to get better. The vet said that given how Disney had been progressing, it was likely that within a couple of weeks, she would have been back at the vet with another problem. And, her legs would only continue to weaken. I didn’t want her to live like that.  I always promised myself and her that I would never be selfish and keep her here because I could not stand to lose her.

During this time of her decline, I was living much the way I did when Ben was alone at home while I was at work. I worried throughout the day if she had fallen or if she became immobile or worse. I ran home after school and was grateful to find her up on the sofa waiting for me. Here I was, having conversations with the vet like I had in the hospital with Ben’s doctor. After Ben had his tracheostomy and got the feeding tube, he had several infections and pneumonia. This indicated that if Ben had chosen to go to a facility, he probably would have returned to the hospital within a couple of weeks with another similar infection or pneumonia. Ben had to decide how he wanted to live and die with ALS. Ultimately, he chose to go to the hospital’s hospice unit and separate from the vent. He knew that I would have supported any decision he made.

In Disney’s case, I had to decide what was best for her. I didn’t want her to be miserable. I let her go. Disney was there for me in the worst days with my dad and Ben. She was there for Ben, even at the end when they let her visit him in the hospice unit. I tried very hard to keep her as comfortable as possible, and on that Thursday night, I was there for her, holding and talking to her as she very peacefully left this world. I’ve done this too often for my loved ones in recent years, and although it’s an honor filled with love, I’m overwhelmingly sad and reliving all of those bad moments. I can now add the loss of Disney to the other lousy February dates: my dad’s birthday, I lost my dad and my grandma in February, and it was Ben’s birthday. I’m always happy to welcome March.

I know all the feelings of grief and their unpredictability. I know the sadness and the loneliness and even the anger, though that has been a more recent emotion for me within the past year. I am now caught up in the bad memories of conversations that I had about Ben, being there and watching him leave this world, feeling the awful loneliness at home, losing my routine. Disney was on special foods and meds that made for long mornings before I left for work.  My mornings with Ben were also hectic, making sure he was settled and secure before I left for school and rushing to get out the door. Those memories have not been not the ones that stick out at this point. I prefer to focus on the good times. But they’re back and they’re gnawing at me. The frequent tears have returned.

I was back to going through motions. I did not want to leave my apartment and yet it was so hard to be here, where I kept getting up to check on Disney only to remind myself that she was gone. I removed her meds, syringes, food bowls and litter box, which seemed to change my entire apartment. So, I went out and met my friends. We talked about Disney,

I had taken Disney’s Valentine picture the weekend before she died. I’ve written about my Valentine card-making tradition. Here I was with a bunch of Valentine cards featuring Disney’s photograph. Should I send them? Would people think it was wrong? I decided to send the card with a note attached that said that I kind of knew that it would be our last Valentine card, and that I wanted people to have a sweet memory of Disney because, after all, Valentine’s Day is about love.

I am someone who has to have a furbaby, and although it was very soon, on February 18, I welcomed a new little love, Tinker Bell, or Little Bell, as I have taken to calling her because, at less than 8 pounds she is almost fairy sized! She is only two years old and had a rough start in life, but she is a friendly, adorable cat who almost immediately began following me everywhere and talking to me. She is always at my side but she does not like to be hugged or held, as Disney did. Tinker Bell has quickly learned that in this home, she is safe and loved and will be spoiled. Sometimes, she is a delightful distraction because she is a bundle of energy that runs around the apartment and is so curious. At other times, because we don’t yet know each other well, I am reminded about the many things I loved and now miss about Disney. It unnerves me to wake up and not have to make time to give medication and arrange special meals because I feel the loss (but am so grateful that Tinker Bell is healthy.) Changes in routine are reminders of the loss. Disney knew everything I went through with my dad and Ben and was always ready for a cuddle when I needed it. Sometimes I think about that and smile and sometimes I cry. I tell Tinker Bell about Disney and I like to think she listens so that she knows that she, too, will be adored (and that hugs are nice!)  I like to think that Disney is also listening when I talk about, and to, her so that she knows that she will always have a big place in my heart. Although she was given a birthday of January 29 because it was the day that she was found in a box on Staten Island, I gave her a birthday of February 18, so give myself one good day in the month of February. With a name like Tinker Bell, I believe that she is going to be the pixie dust that the month of February needs.

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

Tinker Bell is settling into her new Disney lifestyle!

I haven’t written about the new film Mary Poppins Returns. It is a very special film. The original Mary Poppins is very dear to me because it was the very first film I ever saw in a theater, and because for me, it is pure magic. Julie Andrews will always be Mary Poppins to me, though Emily Blunt did a wonderful job. This new version does not quite have the same whimsical magic for me, but it is very touching, and special in its own right, with important messages that resonated with me about love and loss. The song Where the Lost Things Go addresses how those we love and lose stay with us.So much of what defines our relationships seems to vanish with those we lose, but the memories keep them alive, but in a different way. It is not enough, and yet, it is quite a lot to have felt and given love, and to believe that our loved ones are thriving in a different place while they live in our hearts. I’ve printed the lyrics along with a video of the song.

The Place Where Lost Things Go
Composer: Marc Shaiman
Lyrics: Scott Wittman
Performed by Emily Blunt (Mary Poppins)

Do you ever lie
Awake at night?
Just between the dark
And the morning light
Searching for the things
You used to know
Looking for the place
Where the lost things go

Do you ever dream
Or reminisce?
Wondering where to find
What you truly miss
Well maybe all those things
That you love so
Are waiting in the place
Where the lost things go

Memories you’ve shed
Gone for good you feared
They’re all around you still
Though they’ve disappeared
Nothing’s really left
Or lost without a trace
Nothing’s gone forever
Only out of place

So maybe now the dish
And my best spoon
Are playing hide and seek
Just behind the moon
Waiting there until
It’s time to show
Spring is like that now
Far beneath the snow
Hiding in the place
Where the lost things go

Time to close your eyes
So sleep…

There are things that I miss about all of the too many people and pets I have lost, and yet, they are not really lost because they reside within me. The fact is that all of the love I have felt and given has helped to shape me. Now, I hope that Disney and Ben are “where the lost things go,” comfortably walking together, and I’m sure my dad is spoiling her as he always did.

To quote another song – a Broadway show tune- that I often sang to Disney and that seemed to calm her when I gave her some medications, “I love you a bushel and a peck and a hug around the neck.”

 

Thinking of Ben, My Mickey, On His Birthday

Today, February 21, is Ben’s birthday. I’ve been suffering from vertigo and horrible back pain that I think is sciatica, so, physically, I am already feeling pretty lousy. This is another of the February milestone dates that I dread. It is the fourth birthday without him, and I can’t help but ask myself how many of his birthdays I am going to feel like this. The truth is that I have gotten used to the waves of sadness and loneliness. I didn’t know how I would feel today but I go with the flow of my emotions. I don’t convince myself that I have to be miserable, I don’t punish myself, and I don’t anticipate anything other than that I don’t know how I am going to feel and that I will be okay with whatever mood hits. The sadness and loneliness don’t paralyze me the way they did, but the bursts of tears remain.

I miss Ben and I think that’s okay. I miss making a fuss on his birthday. When he was homebound, I decorated our apartment after I put him to bed so he would have a fun surprise in the morning. He knew I was decorating but never knew exactly what he would find, and that delighted him. I also looked at the video that I made on his birthday the first year I was without him, which I have placed here again. There are photos of his birthdays and other happy occasions, and, of course, some Walt Disney World photos. Some were taken when he had ALS and some in the pre-ALS days. The love was always there, so I embrace all of the memories. I guess it will always be jarring but sweet to hear The Beatles’, “Happy Birthday.” Ben woke me up with that song every year on my birthday. Now, I am playing it for him. I find it comforting to revisit beautiful memories. That doesn’t mean that it doesn’t come with tears, but tears are okay. So are smiles.

This year, I’m fairly homebound given the way I’m feeling. That is certainly reminiscent of the way we celebrated Ben’s birthdays. This year, however, I have a new little baby. Having lost my sweet Disney, I brought home little Tinkerbell on Monday. The organization that rescued her listed her birthday as January 29, because that is the date that she was found. However, I gave her the birthday of February 18, which is the day I brought her home. It is my one happy February date amidst of several sad milestones.

Tinkerbell is quite small. At two years old she weighs less than 8 pounds, so she’s almost fairy sized! Disney, when she was healthy, weighed about 16 pounds and so did Tiffany. Tinkerbell is an affectionate, sweet little girl who follows me everywhere and within one night was already sleeping against my feet. She has a tiny little meow, too, that almost sounds like Tinker Bell’s jingle-talk!

Although it’s barely two weeks since Disney went to be with Ben, I realize that I am at my best when I am taking care of someone, human or otherwise. Caregiving taught me that. In the moments, it was not always a lesson I wanted to learn. In fact, at times I resented it. Of course, I needed help so I was sometimes sinking in the tasks and emotions. But, as I have said before, caregiving was the most loving, meaningful and important work I have ever done. I continued it with Disney, as she got diagnosed with diabetes just after Ben left this world, and then continued to have more and more health challenges.

I hope that Tinkerbell, or “Little Bell,” as I’ve been calling her, has a long and healthy life. She’s a wonderful joy in my life right now, and today I will talk to her about Ben. He would be very happy that I called her Tinkerbell (I spelled it a little differently). We loved Tink and the fairy films. We often watched them before we went to sleep. It always made me chuckle that he loved Pixie Hollow Games and would often watch it even when I was not home. Then, he would remind me that he was macho before he met me.

One of my favorite Tinker Bell related memories was from Walt Disney World. We met Tink and her friend Terrence in Pixie Hollow, where, of course, we were shrunken to pixie size. Terrence was so extravagantly in character, having particular fun because we were adults (well, technically- Ben probably would not have vouched for my maturity level!)  and I couldn’t stop laughing. The photographer caught this photo of Ben laughing at me. It remains one of my very favorite photos of him, especially because it was when his ALS was progressing and we truly treasured the laughter. Today, I want to remember that laughter.

ALS,Caregiving,Grief,Walt Disney World, Disney

Ben laughing at me in Walt Disney World when we met Tinker Bell and Terrence.

I will have my usual Disney movie marathon of Ben’s favorites- Monsters, Inc., Mulan, Toy Story (1,2,3) and The Incredibles. I will also show Tinkerbell the Tinker Bell films so she can see the feisty fairy for whom she is named.

This year, my physical feelings happen to match my emotional tension, but I want anyone reading this to know that, at least in my opinion, there is no “right” way to deal with events like this. If I had felt like I did not want to do anything special for Ben’s birthday, and just share a quiet thought of him, that would have been fine, too. I feel no compulsion to defend myself. That, in itself, feels like progress!

As I wrote last year, there is no candle on a cake now, but always wishes that he is comfortable, and running, singing and eating to his heart’s delight. And, wishes for a cure for ALS, because wishes do come true.  As Cinderella’s Fairy Godmother says, “even miracles take a little time.”

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

An important visit to the Wishing Well at Cinderella’s Castle that became a ritual- wishing for a cure for ALS.

When Ben proposed to me at Walt Disney World, he asked me to be His Minnie. So, on his birthday, I say
Happy Birthday, My Mickey!
With much love and pixie dust,
Your Minnie

Halloween 2012. Eeyore’s wearing a birthday hat!

Happy Anniversary, Pinocchio- Lessons On Caregiving and Heartstrings

Caregiving, Walt Disney World, Disney, Pinocchio

Pinocchio and Jiminy Cricket
Walt Disney World

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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