The Hail-Mary Post

Sometimes I forget what 65.7 million looks like. I’ve been combing the web for months looking for caregiver’s stories– blogs, forums, Twitter, Facebook, Pinterest. I’ve turned up many but few command a web-presence. For a couple minutes I can delude myself into thinking I’ve seen them all. In college, resources were finite: to my frustration, there were only so many papers on how speaking in one’s mother tongue affects a colonized people’s identity. I became used to finding all of the information I need from a couple of well-worded Google searches. But 65.7 million is practically infinity when you’re reading caregivers’ stories. If I were to read about one caregiver a day, it would take me 180,000 years. Longer, even, because the caregiving population is growing rapidly. And that would only be for caregivers in the United States. Caregivers all over the world should have their story told.

Of course, the problem of connecting to all 65.7 million caregivers depends on how “connected” each caregiver is to the online community. Does he or she regularly blog or update social media sites? Does he or she know someone who does? As I expand our presence in virtual social networks, I am continually surprised by the number of caregivers I find on every platform. If only half of all U.S. caregivers were “plugged in,” that would still be an enormous presence. But where are they?

Heavily sprinkled across every social media platform available. Twitter gives a megaphone to caregiver advocates. Facebook gives caregivers a timeline. Pinterest gives them boards to post their inspirations and aspirations. Recently, I discovered that caregivers are Tumbling too.

The prominent caregivers on Tumblr are young, usually caring for a parent or grandparent. I think the reason young caregivers have found their niche on Tumblr is that only a very young brain could process all of the text, .gifs, photos, videos, and quotes posted on the site! However. I came across many caregivers with clear posts about their guilt, confusion, and anger, using their Tumblr as a Hail-Mary. Many professional caregivers have also found a space on Tumblr to talk about the stress caused by their job. Unfortunately, it’s common to think that professional caregivers don’t need emotional support because their care is paid. But professional caregivers can easily develop strong, familial feelings for their caree– the emotional and physical toll can be great. It’s wonderful to see that professional caregivers have found a space to voice their stories. Adrienne has always stressed that The Caregiver’s Survival Network be foranyone who needs it. This includes paid-caregivers. All caregivers, regardless of context, should have a place to connect, to learn, and to heal.

Introducing The Caregiver’s Survival Network’s Tumblr.

Breathing Fully and Freely

It’s funny– as I made our latest CareCard (see below), I found myself taking deeper breaths, closing my eyes and feeling my lungs swell. Maybe it’s the reminder that blue skies and white clouds exist (how often I forget to look up), maybe it’s the fullness of the font, or perhaps it’s just that reading a simple direction in how to breathe actually directs my breathing.

Forgetting to breathe is easier than we think. As humans, our first reaction to pain is to hold our breath. When we are humiliated, angry, stressed, we keep the breath in. When life becomes dizzying and overwhelming, take a deep, full breath. Let it out freely. Feel the oxygen rushing to your head, clearing away all of the negative thoughts. Take another. Take another. As many as you need until your head feels a little clearer and your muscles have eased some.

Tell me, is there anything better than breathing in salty beach air on a summer evening? Or the first, sweet inhalation of spring? Or gulping down winter’s crisp breath? Our bodies are waiting to relive of those memorable breaths, all we have to do is pause, inhale, and experience ourselves letting go.

Use the affirmation below to remind yourself to breathe in those stressful moments.

Lightness

It shames me a little to admit this, but I first read this quote on the tag of Yogi tea bag. You know those moments when a coincidence is eerily on point? Well, this was one of those times. Earlier that day I had begun to pack up my things to move to my new apartment. I figured it would take–what, like an hour? O-ho no. Two hours later, my books alone took up all of the boxes I had set aside for the job. Before I started packing, I had this crazy perception of my stuff– that it wasn’t a lot. In my mind I could fit it into a suitcase and a couple bins. But the more I packed, the more stuff there seemed to be. And how to pack it all neatly? And make it all fit? That would require more patience and time than I was willing to devote.

I sat down on a suitcase full of sweaters (just sweaters), feeling completely overwhelmed. As I looked around at my stuff, I felt resentful that I was emotionally attached to all of it. The knitted scarf my friend made me six years ago, the diaries from when I was a kid, the lone earring I’ve been meaning to turn into a necklace, piles of cards given to me throughout the years. I felt the physical weight of my stuff pressing on my chest. Getting rid of it would bring me to tears but holding on to it would surely make me collapse. So I did what any sane person would do when faced with a tough decision– I walked away from it. Not to abandon it, but to remind myself of what a “light” life feels like. I didn’t even bring my bag, no cellphone, wallet, book, etc. I walked around the block and soaked in the lightness I felt without the burden of physical (and emotional) baggage.

When I returned I was ready to divide and conquer. Looking around at my room I figured maybe half of it would fit into my new apartment, some could stay with my parents and the rest would have to go. So I got to it.

When I was able to finally unwind with a cup of tea, I read the Yogi’s quote. I come from a mother who packs for an army when traveling overnight. I grew up with a room full of memories and memorabilia. I live in a city packed with restaurants, cultures, and people. Let’s just say I’m not inclined to living light. Save for when I backpacked across Mali with two friends, I lived light. I traveled light. I had to. But how to continue that light living in an environment that is overstimulating and overbearing?

In moments of desperation I want to throw away everything and start new. But I know myself– in a couple of decades I will sorely miss the journals I have kept since I could write. I will miss those cards that said such special things. I will miss the sweater my grandma gave my mother who gave it to me. These are physical representations of my past and they are harder to let go than the memories that sometimes just slip away. My relationships are my emotional grounding. And I would never dream of cutting myself free of them to chase “lightness.” No. I don’t believe living light requires us to purge our lives of anything unnecessary to survival.

“Travel light, live light, spread the light, be the light.” If we read this quote backwards, we’ll find where to begin. The “lightness” starts in your heart. From there, it will spread throughout your life.

 

Read more from Allie Axel

Direction

Adrienne Gruberg, founder and president, and Schatzie

Please forgive me for repeating myself, if and when I do, but it is clear that when you’re a hard-wired caregiver, like me, there are recurring behavior patterns in your life and although you know you don’t want to repeat the mistakes of the past, or live through painful experiences again, you are hard pressed to shy away from the challenge when it is presented.

Creating The Caregiver’s Survival Network is truly the realization of a dream for me; it’s also a far more emotionally challenging task than I ever would have dreamed, but for very different reasons than I might have thought. Certainly, the website in and of itself is an exercise in extended caregiving. I have a need to make life better and easier for others going through versions of what I went through as a caregiver for my husband and his mother. There is a devil sitting on my shoulder asking me “Why are you putting yourself through this? Why aren’t you just travelling the world and having a high old time? Why do you have this need to be needed? Don’t you deserve to enjoy yourself?” In fairness to the devil, I have asked myself the same questions and rest assured I am no saint.

What I am, is grateful for the gifts that I have been given, mental, physical and material, and I recognize my need to be of service, not the need to be needed. I am a childless nurturer. I never really wanted to be a parent. But I am a great mentor. I never perceived myself as someone looking to fix anyone else; rather, I am looking to teach by example when I am equipped to and guide people to reach their own potential, whether or not I have reached my own. I believe The Caregiver’s Survival Network will provide me with the wealth of experiences to finally accomplish all the things I am capable of achieving.

How many times have we all heard “Do what you love and the money will follow?” Following your heart doesn’t come easy. I would never tell anyone not to try to attain their dream, but there are so many obstacles in the way that many people can’t even see their way clear to having a clear picture of what that dream is. Until very recently, I was so busy with other people’s well being that I didn’t realize that “Hey! That’s what I want to be doing.” I thrive on making other people’s lives better. Easier. I just hadn’t envisioned being able to do it on this scale.

I don’t care who invented it, the internet is a marvel; and as long as I have young, bright, energetic people around me to show me how to best utilize the wonder at my fingertips, I will be doing all that I can think of to make other lives the better for my having been here. I’m not ashamed to say that I love doing good for others. If there’s money in that, it will go back into continuing the good it can do. That is my dream.

For the Friends of Caregivers… Part Two

Adrienne often says that her caregiving role isn’t over even though her two care recipients have passed away. Katie’s isn’t either.

On Saturday, I went to her grandmother’s house for a barbeque to celebrate her birthday. It was my first visit, although I had always heard Katie speak very fondly of her time there. Although both her uncle and grandmother are gone, the house still holds their unreserved love for their granddaughter/niece: pictures of Katie are everywhere, her memorabilia, her college mascot decorates mugs, magnets and T-shirts. Katie’s life lives in this two-story home.

The week her uncle died, I talked to Katie every day. I got a call from her one night saying that the roof over her uncle’s bedroom was caving in. This phone call marked the beginning of her desperate attempt to preserve the home (and family) she loves. Once her grandma passed, Katie embarked on a legal battle to keep the house in the family name. She did the research, defined the unknown terms, hired the lawyers, became the executor of the Will. Did I mention that she managed to study and complete her LSATs? (Katie got one of the highest SAT scores in high school– I’m betting she hit a home run with this notoriously nasty test too).

Katie has shown unbelievable determination and leadership. She has surpassed every expectation I’ve had of her. She is one of those people whose days must have 27 hours in them– 24 hours could not possibly be enough time to accomplish everything that she has. Oh, she’s also working part-time. Another detail I forgot to mention because it seems unbelievable from an outsider’s perspective. Her caregiving role is still very much apart of her identity. But now she’s a caregiver for uncle’s and grandma’s legacy.

After months of conflicting schedules, Katie and I finally got a chance to see each other. As we caught up, I told her about the work we’re doing at The Caregiver’s Survival Network. I watched her face register the comprehension of our undertaking and I finally became aware of the crucial role she held all of these years. She began to tell me things about her caregiving journey I had never heard her talk about and she expressed her appreciation of the site we’re building.

“I wish it was available for you when you needed it,” I said.

Katie response completely took me by surprise: “Allie, you know me, I wouldn’t have used it.”

A moment of shock–and then I understood. Katie has maybe asked for help a handful of times in her life. At the barbeque, we were celebrating her yet she did all of the work, politely declining our offers to help. The lawyers, the Will, her grief– she has accepted all of this as solely her responsibility. To risk oversimplifying her method, if Katie is dedicated to a cause, she knows she can only rely on herself to see it through. Unfortunately, the past disappointments in her life seem to support this idea.

Or perhaps she feels asking for help is a sign of weakness. I have a painfully hard time of it myself. It’s not that I necessarily feel weak asking for help, but rather I have (false) ideas about what I “should” be able to do. I set unrealistic expectations for my ability to handle life’s curve balls. I have faith that I will make it to the other side, but before I do, I am allowed to be confused, to ask for clarification, to lean a little on a friend when I’m having a hard time standing on my own. If Katie would lean on me, I would happily use all of my strength to keep her up.

I hope caregivers like my friend Katie will be able to take the first step towards asking for help by developing the willingness to receive it.

As a friend of a caregiver, I understand now the limitations of my assistance. But I also understand where I can be of maximum service. I offered to do any research she needs to keep the memory-filled home of her childhood in the family name. I am available to go with her to meet lawyers or other professionals so she has some backup. I can help her through showing her her love and support in creative ways. Like getting all of my friends to chip in on a spa package so she can take a much needed break to decompress. I will not always have the answers for her, I may not even be able to ask the right questions, but I can honor the parts I recognize and love about her. Her strength, her determination, her playfulness, her loyalty. I am lucky to have been able to see the home she considers to be an extension of herself. But lucky mostly because I have such a fierce, lovely friend.

Katie, I’m dedicating my work here to you.

For the Friends of Caregivers… Part One

My friend, let’s call her Katie, has been a caregiver for her grandma and uncle for almost as long as I’ve known her. But did I really know that? I’m not sure it registered until last Friday when I saw her for the first time since I started working at the Caregiver’s Survival Network.

I met Katie in high school. We became very close when we were sophomores, going to the beach on weekends, taking vacations together. She always talked about her grandmother and uncle, how much she looked up to them. She was the girl in high school that put family first, before parties, before everything. This was a foreign concept to me at the time, as I’m sure it was for many of our friends. I remember admiring Katie for being able to say no to plans because she had made a commitment to go to her grandma’s house. I still admire that she was able to do that. Again, that was not something I was capable of doing when I was sixteen and at the peak of my self-involvement. Maybe she didn’t feel as if she had a choice. I can’t say for sure, but I can say that from the stories she told, her grandmother and uncle were her heroes.

If I was aware of the caregiving population in high school I might have noticed the transition in Katie’s role, from a devoted granddaughter/niece to caregiver. However, I was not. I was painfully unaware of the responsibilities my beloved peer held. If I were to hazard a guess, I would say Katie began her (more involved) caregiving journey right around high school graduation. “More involved,” because I believe she has caregiving in her blood. Not just for her family by birth, but the family that has grown up around her. Namely for her friends. She is of the die-hard loyal breed. The kind that would storm after someone who just insulted you while you were too hurt to say anything. Or the kind that stuck by your side when everyone else had given up.

While I was stressing about starting college, registering for classes, saying goodbye to high school friends, Katie was dealing with that plus the added fear that she was leaving two members of her family whose health had taken a downturn. She would no longer be a 30 min car ride away, but a plane ride. Her long-distance caregiving role manifested itself through stress, worry, and fear concerning the health of two of the most important people in Katie’s life. She visited regularly. Got away from school as often as she could. I seldom saw her in our four years at college. If we happened to be home at the same time, she was with her family.

I never got a chance to meet those special people in Katie’s life. In a little over a year, from seniors to graduates, both were gone. Her uncle died while she was at school. I can only imagine the pain this must have caused her, her worst fear come to pass.

Here’s where I have to be painstakingly honest, for all of those friends of friends who have lost loved ones. I had no clue how to help her. My heart hurt for her loss. But the words to express that seemed insufficient. I had never dealt with the grief of a peer. If I could have done anything in the world to take away her pain, I would have. I pray that she knew because I’m not sure I was able to say it out loud. I was too focused on my appearance: did I seem like the supportive friend? Am I saying exactly the right thing? Yes, there are things that are not at all helpful to say to the bereaved. But I focused on how she would take every single word I said. In that panic and confusion, I’m sure I said the “wrong thing.” However, it wasn’t about me.

To me, that’s the key difference between caregivers and non-caregivers. Caregivers get used to the idea of giving without much inhibition. In high school, to spend time with my family over socializing with my friends seemed like the end of the world. Maybe Katie felt that way too. But it didn’t stop her from seeing the ones she cared for. My ability to give selflessly to my friend in need was inhibited by self-centered thoughts. Instead of being there for her, I worried about how much it seemed I was there for her.

Here’s what I’ve learned. It’s okay to be upfront with you’re own experience with grief. No one benefits when you say “I know what you’re going through” when you don’t. I can only imagine the loss. Same thing with caregiving. Even though I read caregiver stories every day, I will never assume I know what it feels like until I’ve been in the role myself. But I feel I can be there for Katie in a way I couldn’t before, by acknowledging her role as a caregiver.

It’s also okay to ask what your friend feels s/he needs. Do you want company? I’ll be in your neighborhood for the next couple of hours. Do you need some coffee? Groceries? A movie? Allow for flexibility. Your friend is probably taking it day by day.

It’s the kind of strength that Katie has shown that hardens my resolve to be of service to loved ones in my life and to those caregivers whose strength is unrecognized by the masses.

Stay tuned for part two.

FTD Caregivers

Em*, suitably given the position as my godmother, has always led by example– she demonstrates what a open, loving life looks like. Through her I have discovered that life is an illustration of growth, recovery, and spirituality. And by no means am I the only one influenced by her grace and insight. She is a doctor advocating for and supporting those suffering from dementia, as well as their caregivers. Last weekend I saw her for the first time since I started working with the caregiving community. As always, it was incredible to see her, but this meeting held a special significance. I can now appreciate and understand the work the Em does so much more than I ever could have before. Although her education and work focuses on dementia patients, caregivers are never a second thought. She knows the toll caregiving can take, especially when a loved one has a disease as devastating as dementia.

She informed about a type of dementia I’d never heard of, one that is particularly nasty. Frontotemporal degeneration. Or Pick’s disease. The disease affects the judgment center of the brain and deletes the filter we have for “good ideas” and “bad ideas.” Instead ideas become reality, no matter how out-of-character or unsafe. The site, The Other Dementia reveals a shocking fact: “FTD accounts for as many early dementia sufferers as does Alzheimer’s under age 65, and often appears in men and women as young as their thirties.” The disease is hard to diagnose because the symptoms begin appearing slowly and vary from case-to-case.

Em explains that the caregivers of FTD patients deal with such extreme behaviors that they needed a separate support group from Alzheimer’s caregivers. Because patients are prone to inappropriate social behavior, The Association for Frontotemporal Degeneration has created awareness cards for patients and caregivers to hand out, excusing his or her behavior and explaining a little about the disease. Spreading awareness is what prompted me to write this post. FTD moves with stealth so it often takes years to accurately diagnose. But the more people who know about FTD/Pick’s disease, perhaps the sooner it is recognized and the sooner support is sought.

The story of any caregiver is incredibly humbling. With FTD caregivers, I am particularly in awe. I can only imagine the vigilance and courage needed to care for a loved one with the disease.

Over lunch, Em shares with me a particularly moving story of a man caring for his wife with Pick’s disease. She was amazed by his ability to decide that he would have, in his words, a “get to” day rather than a “have to.” By choosing a “get to” day he allows himself to think of his actions as service to his wife rather than a chore. This is a beautiful sentiment. For me, it’s fortunately very easy. I get to go to work to a job I love, I get to take the train downtown giving me time to read, I get to pay rent because I have an apartment I cherish, I get to clean-up because I value order and space (and a bug-free apartment!)– the list could go on. Swapping out “have to” for “get to” transforms aspects of our lives that typically spark anger or resentment into gratitude. Of course, understandably, caregivers may have to work harder to replace the “have to” with “get to.” However, this should never be a reason to stifle feelings of anger, depression or loneliness. No matter how caregivers cope with their responsibilities, they are always prone to isolation, exhaustion, and illness. But there are ways to manage resentment and anger healthily– for me, this is one of them.

*Names has been changed to protect the identity of the patients and caregivers.