Communicating with Mom: PSP and Talking

“Maybe I would have listened. But maybe, too. I would have just closed my eyes. Maybe I would have tried to memorize the smell of bug spray on my mother’s skin, or the way she absentmindedly braided my hair, tying it off on the end with a stalk of green grass” Jodi Picoult

When I make pie dough I mediate. I pile a cup of flour on my counter, cut up a stick of butter into tablespoon size chunks, and I cut it in. Slowly, and deliberately. I cut the butter into the flour until it is time for water. Pouring from a small measuring cup by tablespoon increments I slowly mix in the water until magically I have a ball of dough. Making pie dough reminds me of my mom. Not my mom who is in the nursing home, trapped in her own body, increasingly struggling to communicate. No, making pie dough reminds me of my Mommy. My Mommy, who made balloon buns every Christmas, who loved reading and going to the beach. My Mommy, who always knew what to say when I felt tired and sick and didn’t know if I could keep on keepin’ on.
The thing about PSP is that I still have glimpses of my mom. I still have pieces of her, but, in between these pieces is a woman who I don’t know anymore. Just when I think my heart can’t take anymore, PSP delivers something else on our door. Another new memory of my mom that I have to place beside all the other memories of my Mom. The woman who was and the woman who is. But, just like PSP has left me reeling from the losses, the despair, and all the bad memories the PSP has also given me gifts.

Communication

One of the many horrible parts of PSP is that it robs people of the ability to communicate. But, despite the lack of ability to communicate, the person is frightenedly cognitively aware. For those persons reading this that know me or who have read other things, I have written- the lack of ability to communicate with my Mom the way I used to is for me, one of the worst parts of PSP.
I miss talking with my mom. Hell, as an adult, I did it almost every day for an entire decade. Of course, I miss talking with my mom. But, I also hate that my Mom can’t talk with us. There are days when I spend hours trying to figure out what she needs, what she wants. The trying to figure it out is defeating. It is worse when she or I give up. Somedays, Mom is able to talk, whole sentences. On these days, I drink in her words because I know it could be the last time Mom tells me she loves me or the last time I hear what she is thinking. But more and more I am losing this gift, and more and more I sit as close to her face as I can and try my best to figure out what she needs. I watch her face as I guess…sweater? Bathroom? Smoke? And when her eyebrows lift to the sky, and her face turns into her new PSP smile I know I got it.

We now communicate in yes and no questions, thumbs up for yes, thumbs down for no. We now communicate in mumble jumble. Luke and I in her room, she is in a recliner, he is in her wheelchair, I am seated next to her chair on the floor…

Mom tries, ”your mumble jumble.”
Luke leans closer he says, “Ma, your what?”
She tries again, ”your mumble jumble.”
I start guessing, “you’re going somewhere? You’re in pain? Your…”
She doesn’t smile.
“Ok Mom, try again.”
”your mumble jumble.”
“is that a g? your g…” I reply.
I look at Luke, Luke looks at Me, Mom looks at both of us.
“I’m sorry Mom we are trying…try one more time.”
”mumble jumble gur mumble jumble.”
All of a sudden, I look at Mom, “yogurt! You want a Yogurt.”
Eyebrows raised, PSP smile, nodding.
Luke looks at me, “How did you figure that one out?”
“I am the Mom whisperer.”
“No you’re not, I am.”
“Did you figure out yogurt?” And I run from the room to get my Mom a yogurt.

Other times, simple communication takes longer. Before the nursing home, she was trying so hard to tell me something. If I had to guess I would have said it was probably the nuclear codes or something equally important. I worked at it for over thirty minutes and was getting nowhere. Then from the kitchen, Luke pipes up (yes, for some reason it is always Luke and me), “Jenny, you like word puzzles this should be fun for you!”
I look up, “umm…”
and he looks and me and says, “yeah when it is your dying mother not so much, huh?”

When the usual methods failed, I started with the alphabet. One letter at a time, give her time, nod yes if this is the letter and don’t if it is it not. It didn’t work. I moved on. Ok, Mom, I am going to try again. A…nothing, B…nod. Then, A…nothing, B…nothing, C…nothing, D…nothing, E…nothing, F…nothing, G…nothing, H…nothing, I…nothing, J…nothing, K…nothing, L…nodding. Then A…nothing, B…nod. Then, A…nothing, B…nothing, C…nothing, D…nothing, E…nothing, F…nothing, G…nothing, H…nothing, I…nodding. And again and again, until we had B-L-I-N-D S-P-O-T. I was still confused. Until from the kitchen, “Blind Spot, she wants to watch Blind Spot”

Eyebrows raised, PSP smile, nodding.

But then, there was the day I visited after she recovered from the flu- almost six months after the alphabet incident. I walked into her room, and she looked up at me from her recliner, “Hi Jenny, what is new with you?” We had entire conversations that day. Driving home I wanted to scream from my car to anyone who would listen, “I talked to my Mom today.” Sadly, no stranger would really understand what this meant. So, I sent texts to the people who have loved me through this. Ryan, L.R., Kate…”Mom said seven whole words in a row today! She was talking so good.”

Yeah, I miss talking with my mom. Even now, I will be at home living my life far removed from my Mom’s daily existence, and something will happen, a thought, an article I see, a political event, news from my doctors, something funny, or something sad and I will ache for her, I will reach for my phone and get ready to push the “mom and dad” button. Then it will hit me, a.) mom doesn’t live at home anymore, and b.) she can’t really talk anymore. So I pace the house, I talk to Ryan, I send Kate a message, sometimes I will go to Ryan’s moms house just because she is a mom, sometimes I text L.R., mostly I pace and I talk to everyone but my Mom, and while it is a nice distraction- it is not my mom. Then the next time I go to see her, which these days has been two or three times a week, I will tell her whatever it is I wanted to tell her. Depending on the day, my mom will answer, or if she can’t or if she is having a bad day the PSP will answer.

When I learned that more than likely I was heading for intestinal resection, I didn’t know how I was going to do it without my mom. Not that I don’t have support- I do. I have so much support and love it could fill entire cities. But, none of that support or love is my mom’s. I talked to everyone I could think of, and I just wanted to talk to my mom. But, it was not a good week for mom, and I had to tell her what was up. So outside, I knelt down next to her wheelchair as she smoked and explained, “I got my MRE results. Things are not so good. Benson said that I have some small fistulas and an abscess. I also have some serious inflammation and narrowing. He said that we can do Stelera and see but that I might need surgery anyway.” Mom listened. Then with all of her strength, “oh Jenny.”

I just wish I could process with her; I wish she had been with me when I had the test…but, my Mom has PSP, and I have to be strong for her. My mom has PSP, and somehow I have to figure out how to replace her with everyone else. Kate drove me to the illeoscopy, Ryan’s mom was the first to know about my MRE results, I am planning for surgery recovery without the reliance on my Mom, and it will be okay.

I am my mother’s daughter as are Kate and Emily. Luke is my mother’s son. I would like to believe we all got the best pieces of her in different configurations. Luke has her kindness. Emily has her sensibilities and politics. Kate, like Mom, was born to be a mom. Me, well I have her love for reading and her philosophies. I also look like Mom. Emily and I both do.

When Mom dies, she will live on in the four of us. She will live on in Jazzy. She will live on in the stories I tell, the way I live my life, and the love she radiated into the universe. She lives on today in each of us and in each of the pieces of her she gave to us. That is why when I need to talk to Mom, I talk to three other people and the combination of their support, love, and advice equals the one person who gave us each the best pieces of her.

Burnt Spaghetti Sauce

“Some foods are so comforting, so nourishing of body and soul, that to eat them is to be home again after a long journey. To eat such a meal is to remember that, though the world is full of knives and storms, the body is built for kindness” -Eli Brown

There is nothing better than homemade spaghetti sauce with bread and butter. Luckily for me, one of my mom’s legacies is the making of spaghetti sauce. Kate, Emily, and I all view the process as both cathartic and also one of the connections we carry of our Mom. Shortly after Mom’s diagnosis, looking for comfort through familiar and loving food, Kate and I decided to meet at Mom’s and with her guidance make her sauce her way. As fairly budget-conscious people we decided that the best course of action was to make A LOT of sauce, divide it into thirds, then Kate, Mom, and Dad, and I would all have Spaghetti Sauce for the freezer.

Several pounds of hamburger and an ungodly amount of tomato products later the sauce filled an entire stock pot. By the time I got to Mom’s, Kate had begun the process and together we added spices, more tomato product, a little sugar. But, given that this was a significant amount of sauce it was decided (I am not naming names here, but this post’s author did not make this decision) to up the heat some as a mean to speed the process. Not even fifteen minutes later the smell hit us, the sauce was burning. For any person reading this who has ever made spaghetti sauce, you like us know that once you burn the bottom, the entire batch takes on a unique and decidedly burnt sauce taste. But, (again) being the fairly cheap people we are we added more spices, stirred more vigorously, divided and froze the sauce.

The entire winter, Kate, Dad and Mom, and I ate burnt spaghetti sauce. Text exchanges in those months took on a fun theme- “I just had some sauce, if you reheat it with more spices and a little sugar you can barely taste that it’s burnt” and “the sauce isn’t so bad, I made a lasagna and could barely tell.”

Lessons from Sauceageddon 2015

1. Food will in Fact Help

Food and grief are complicated. Some people who are grieving find that food is just not appealing to them while others find themselves managing complicated food cravings. But, food can also promote healing. The article, “Can Food Help Us Cope With Grief?” points out that for many food is tied to feeling of love and comfort. These feelings of love return when we try to perfect or recreate a family recipe. As the article says, “After the death of someone close food can seem unimportant. Grieving can make us lose our appetite and the motivation to cook, but food can also play an important healing role in remembering those who have gone.” For Kate and I, making Mom’s spaghetti sauce with her before she dies helped us in our anticipatory grief. Through cooking and remembering the times we had mom’s spaghetti sauce, we became more connected to mom and each other.

2. It is All About Perspective

We didn’t have to keep the sauce, and we certainly did not have to eat it all winter. But, instead of focusing on the burnt part of the sauce we focused on how to improve it, enjoy it, and use it. Life is going to hand us all more than burnt spaghetti sauce, and we will all have to decide if we are going to eat it or just give up and throw it away. It is not the event that truly matters. Instead, it is how you think about and cope with the event. Today, two years later Kate and I sometimes joke about getting together to “burn some spaghetti sauce.” For us, this has become a code for “hey life is pretty rough right now, let’s do something fun and not focused on caregiving, paperwork, and stress.”

3. Sometimes All you Can do is Laugh

Burning that spaghetti sauce gave Kate and me a chance to either focus on negative feelings such as anger that we burnt the sauce, or sadness that we would not have the same delicious taste we usually did when mom made it, or to laugh at our mistake and take meaning from it. Kate and I chose to laugh. I remember the day of the burnt spaghetti sauce fondly. Not because we made burnt spaghetti sauce, rather, I laughed so hard I cried, Mom laughed at both Kate and me, and we had a genuinely good day. In our lives there will be many moments where we can either laugh or cry, for me, laughing will always be the preferable solution.

How do you handle life’s burnt spaghetti sauces? I would love to hear from you in the comments.

On The Outside Looking In

“Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.” -Mother Teresa

A perspective of PSP and the heartbreak of the family by Ryan.

Jenny’s parents were young when they brought her into the world, and the short gap between their ages helped to form a bond that might not necessarily have been there if a more profound age difference existed. Jenny always said she was thankful to have such young parents because growing up they were very active and did things that not all the other kids’ parents were doing. For example, Jenny often talks about her mother and how she would pull over to the side of the road as they were driving when coming across a patch of wildflowers. Together with her mother, she would examine the find, and her mother would encourage her to identify them. That’s how Jenny now knows the names of most of the flowers in Vermont.

Jenny also remembers with fondness how as a child she would never leave the house in the summer without her swimsuit. Her mother would insist on a change of clothes being kept in the car just in case in their travels they uncovered a beautiful swimming hole. The randomness of her parents’ ways and their attentiveness and participation in her daily activities is something she attributes to her parent’s age. “They were always involved with me and my siblings,” she says. The look in her eyes as she glances back into the past and once again relives those long-ago moments is indicative of the love she has for them. Jenny considered herself lucky because most kids do not get the opportunity to grow up and have parents who still have their entire lives in front of them, too. The chance to spend so much time with them, and to enjoy all of life with them, is something she holds near and dear. However, when her mother was diagnosed with a rare and fatal brain disease, everything changed.

Progressive Supranuclear Palsy (PSP) is a rare and fatal brain disorder. Jenny says all the time how a diagnosis of PSP is “like winning the lottery.” This disease, however, is not the lottery anyone wants to win. The comparison of the lottery stems from the rarity of the disease.  She fights back the tears and shakes her head. Suddenly, a slight smile forms on her lips and she sighs and laughs in a way that suggests this is simply her family’s typical bad luck. “Leave it to someone in my family to get a rare brain disease,” she says. She takes the news about as well as anyone can. Jenny was slow at first to process what the diagnosis meant. Back then the “scary stuff” was still somewhere down the road, and it was tomorrow’s problem and could be dealt with in the future.

Time is unforgiving, and reality began to set in with her mother’s loss of mobility. The progressiveness of the disease started to show its ugly self. Simple tasks, such as walking, became more of a struggle and eventually impossible. Jenny now has to assist her mother in and out of a wheelchair to get her to the bathroom or anywhere else around the house. Conversations that once filled the silence of the house are not as familiar anymore due to the loss of her mother’s speech. The words are slurred and at best difficult to understand. “She’s trapped in her own body” is how Jenny explains it. That is what PSP does to someone. The mental faculties are still fully in place, but the disease takes away the victim’s ability to move his or her own body. Jenny often talks to her mother without expecting a response. “I’d give anything to hear my mom’s voice again,” she says. “Not the way it is now, but the way it used to be, you know?” She regrets not ever having recorded her mother’s voice for prosperity. She only wants to talk to her. She understands her mother is there inside, even if on the outside it appears she is not. Jenny will sit in a chair next to her mother and knit while talking about the events of the week and fill the silence with her own words. The time they spend together is cherished.

Time is of the essence. Jenny acknowledges that there are so many things she would like to do differently if she could go back and do things all over again. She would record her mother’s voice. She would talk to her mother and ask her questions and seek advice. Jenny says she is guilty of thinking there would always be a tomorrow. For all of her life, Jenny has been comforted by her mother, and now she is losing her. “This is so unfair,” she says. Jenny spends the remaining time she has with her mother trying to give her comfort and searching for ways to fill the emptiness she feels by this devastating loss.  You never know what kind of obstacles life will throw at you, and Jenny will be the first to tell you to “enjoy every minute you have and don’t ever take anything or anyone for granted.”

Letting Go

 “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” – Lao Tzu

Today, I want to write about what PSP has given our family.

After my mom’s diagnosis with PSP my sister, father, and I became her primary caregivers. With us and help from a local agency, we followed Mom’s advanced directive and DNR to a T. Even to the point that my sister (Kate) and I advocated for and fought for her right to pursue physician-assisted suicide. As mom has progressed, she has become trapped in her body. She has lost the ability to talk freely, to eat foods she wants, to walk, to move on her own, to see…the list goes on and on. My mom and those that love her have been grieving all of these losses as they come for years. PSP is horrible beyond imagination. But, PSP has also given our family the knowledge of what is truly important.

One weekend we believed that Mom was going to die. Not a drill, not an adverse reaction to medicines, or choking on something and being revived, or even aspiration pneumonia. Rather, the END in all capitals. On Saturday, we were given two options. Option one: Send mom from the nursing home to the hospital for iv antibiotic treatment and life-saving interventions. Option two: Allow Mom to take off her non-rebreather and allow her to die. Mom had always been very clear with her wishes, and she had prepared an advanced directive. The advanced directive and Mom’s wishes were no hospitalization and no antibiotics. But, despite the lack of speech and losses of physical abilities Mom’s mind has remained intact. So, we wanted to double check what she want. Thus, I found myself being the one to ask.

On Saturday, I sat on her bed with her and held her hand in mine. I explained her options to her. Then I said “Ok Mom, squeeze my hand if you want to go to the hospital.” She did not squeeze. Then I said “Ok Mom, squeeze my hand if you want to stay here.” She did not squeeze. So to check that she was with me and understanding I said “ok Mom squeeze my hand if PSP still sucks.” She squeezed. A while later she was able to indicate that she did not want to go the hospital. So, my Dad, Kate, and I called everyone else. My sister from New York City arrived late Saturday night. We all agreed on Sunday morning if Mom wanted to remove her oxygen then that was what we would do.

Throughout the night Saturday, Mom had an uncontrolled fever, and she kept trying to remove the oxygen. When I arrived early Sunday morning, she continued to try to remove the Oxygen. My Dad said, “hang on Debbie, wait for everyone else.” He looked at me and said, “I promised her when this time came we would not drag it out.” So, I called my sisters and said get our brother and come now she is taking off the oxygen. I let Mom’s siblings know where we were at and I prepared myself to be present.

I sat with Mom after she removed the non-rebreather. Unlike my sisters, I had not yet been able to tell Mom what she meant to me. It was just too big, too hard, too sad. But on Sunday morning as I sat with her- just me and her and Dad and as she struggled to breath I couldn’t help the tears from falling anyway so I said to her, “Mom this sucks, and I love you.” And as I cried, she reached her hand up and brushed away my tears, and she pulled me into her and held me as I sobbed and I said everything I could possibly say. “Thank you for being my Mommy.” Ever the mom- as she lay dying she comforted me. By the end of the day, Mom was still with us. As I write this, Mom is still with us.

But, I learned something entirely critical this past weekend. I learned more about love that I thought was even possible. In all of the reflecting, I have done I have concluded that the most significant gift my Mom and Dad have ever given me has been the power to love completely, unconditionally, and without abandon.  To my siblings, Dad, and I, Mom is our entire world. We don’t want to lose her at 58, and honestly, if she were 108, we would still not want to lose her. But, love is sitting with someone and respecting whatever wish they have even when every part of your body wants to call 911 and get an ambulance. True love, is letting someone go however it is they want to go.

During this journey with PSP, love has manifested itself in a million ways. Love was a road trip Kate and Mom took to NYC as one of Mom’s bucket list items. Love was a son lying in bed with his Mom and listening to music. Love was helping Mom shower, hand feeding her when she can’t do it herself, suctioning her mouth when it is full of junk, washing her hair, holding her hand, and making really dumb jokes cause they make her smile. It is all love, showing up and being present. But, the greatest act of love that I have ever seen was Sunday morning when Kate, Emily, Luke, Dad, and I watched Mom take off her oxygen with the belief that her doing so would result in her death. This journey is not yet over. Who knows what horrific event will come our way next, but, what I do know is that like every other challenge we all will meet it with the unconditional love that Mom instilled in each and every one of us.

Mom is Stuck, the Phone, and Friendly’s

“There is no such thing as a good call at 7 AM. It’s been my experience that all calls between the hours of 11 PM and 9 AM are disaster calls” -Janet Evanovich

I was standing outside of Friendly’s restaurant in Greenfield MA when I got the Facebook message: “Mom is stuck.” I had no idea what “mom is stuck” meant…is mom stuck in her wheelchair, stuck on an idea, stuck in a rut? So, even though I was supposed to be on a date with my partner who admittedly I had been neglecting recently- a dying mom will do that, I called my sister. Standing outside of Friendly’s, the car full of Christmas decorations, in the cold December evening I learned what “stuck” meant.

Apparently, since Dad had been home mom had been unable to move, talk, or do anything. Kate and I both hoped that the stuck would be temporary, but we prepared ourselves for not just in case. Dad had called Hospice and apparently this was okay as long as she was breathing normally which she was. So, with nothing else to be done, I went and had Friendly’s. I ordered a turkey Supermelt with French fries, and we split a Reese’s Peanut Butter Cup sundae for dessert. It was absolutely delicious, and I didn’t cry inside the restaurant once. But, the focus of the conservation was on Mom and stuck. I wondered out loud if this was it, was this her new norm? Would she come back? If not what would we do? I remained focused on Mom being stuck for the remainder of the evening and while I did not cry inside of Friendly’s once I did cry before I went into Friendly’s, driving home on 91, and once when we got home. PSP sucks like that- I don’t want my entire life to be wrapped up in PSP, and I know it takes a toll on every single relationship I have. I know my partner wanted us to be ordinary 30-somethings getting ready for Christmas, going out for dinner, talking about work, school, and our holiday plans, but again I drove and cried, and I was so focused on what “stuck” might look like.

As was our new normal, I messaged Kate a lot that night as we sat by and waited on standby and when the next morning Mom woke up “unstuck” we celebrated this small victory over PSP. As the months wore on, the “mom is stuck” message would be repeated. In fact, “Mom is stuck” just became a normal part of the interactions between Kate, Dad, Luke, and I. We all learned that stuck would happen and that she would unstick, and maybe someday she would not unstick. But, all that we could and can do is what we had done since she started falling- wait and see and take it one day at a time, that powerless feeling that is just a part of PSP.

Everything in my life over the past two years has been impacted and shaped by the backdrop of “Mom is dying.” This dinner at Friendly’s and “Mom is stuck” was not unlike any other outing I have taken since her diagnosis. My phone remains on all the time, and I wait.

I wait for the message from Kate, the call from Dad, when she was home it was the calls from RAVNAH and now the occasional call from the nursing home. The phone and I have a complicated relationship. For example, when I am relaxing at home or even in bed with my phone in another room when the phone rings or pings both my partner and I go running. I want the phone to be somewhere else, and I want not to have to jump whenever I hear it, yet, I can’t not. Especially when Mom was home, we were on constant alert, with constant anxiety, and I was tethered to my phone. The phone is often the bearer of some new horror of life-changing/interrupting thing that just can’t wait. So, I manage the phone in between normal everyday life- just because my mom is dying does not mean the world stops (even on those days I wish it did).

Chocolate is Breakfast

“All you need is love. But a little chocolate now and then doesn’t hurt.” -Charles M. Schulz

Mom had a new aide who I happened to call one morning because I needed to let mom know, something. The new aide was wondering about EVERYTHING. Having never been to the house before he had not worked with Mom prior, and at this point, mom was beginning to struggle with communications. The aide was a bit perplexed. He was said, “I offered your mom breakfast, but she didn’t seem to want any, but she ate chocolate.” My reply was, “chocolate is breakfast.” And it was.

Every morning since her diagnosis, Mom has chocolate with her coffee. In recent months, as the swallowing has gotten worse and as her ability to use her body has changed we have to help her more and more but, for years chocolate was breakfast, and I had been fairly certain that Chocolate would be breakfast until she died.

Chocolate for breakfast has also been a guiding post. As Mom has progressed, her morning (and Chocolate routine) have constantly been revised. In the first year of PSP, Mom would sit in the kitchen with her coffee and chocolates. These times I would visit with her, update her about the week and as she progressed from walker to wheelchair and decreased vision and verbal communication I would read her snippets from the mail or news. In the second year of PSP, I would always say to her, “I gotta’ peel your chocolate for you.” So, when she was still at home, in the morning after we came out of the bathroom, I put her coffee in her mug and stirred in the thickener, and then I added the correct amount of cream. During those days, I would bring her coffee and a handful of peeled chocolates to the living room. As she began to work on her coffee, I would peel a handful of Hersey’s kisses and place them on the lid where she could reach them.

In the nursing home, I became obsessed with peeling chocolates for mom. I put five in a small cup and make small “single serve” cups of peeled chocolates. I make her these cups of peeled chocolate whenever my hands need something to do. So, by the time I left for the day I had created a row of soldier cups holding their five peeled kisses waiting for my mom. Then Mom started having aspiration, and it was just not safe for her to eat alone.

So, now, when I am there after lunch, I open her nightstand drawer and locate the Chocolate kisses I know she has there, and I peel a few. Two for mom, one for me. Chocolate is no longer breakfast, but, when I open the drawer and pull out the kisses Mom’s eyebrows raise in her new happy look. I place a tissue on her table, and I place the peeled chocolate on it.

I am not sure what the next chocolate routine will be. I am sure that as it changes, I will look back and miss the old ones (as I always do). But, I also know that as long as she is able to swallow, Mom will always have some form of Chocolate at some point during the day- even if we have to puree it. Chocolate for breakfast (or after lunch) is one small pleasure that Mom gets and it is not one that one of us would ever deny her.

kiss

And They Lived Happily Ever After

“’So what’s the point, then, if we can’t be happy? Why are we doing any of this?’ ‘Oh, there’s definitely happiness,’ Jack said, turning his back on the ocean and looking at her. ‘But it’s just about moments, not ever-afters.” He grinned. “Like when you’re right in the middle of the ocean with your friends, with no one trying to kill you in any kind of horrifying way. You have to appreciate these moments when they happen, ’cause obviously we don’t get many of them.’” -James Riley

I recently had the opportunity to reflect on the idea of “happy ever after” as it applies to my families’ future. At times during this experience, it has been easy to get lost in the hopeless, living one crisis to another. In my reflection on this I wrote, “For months, I had been in a state of survival. Living one crisis to the next and waiting for the damn phone to ring for the next one. From medication reactions to aides getting lost and Mom having to be trapped for hours without any assistance to falls that brought Kate and I to the ER…from suctioning food out of mom’s throat after a really bad choking incident to learning how to humbly with grace help my mom to use the toilet…watching someone die of this horrendously cruel illness has been the single most hardest thing that we have ever done.” In all of this suffering, it can be hard to find time to breath let alone hope or optimism for the future.

Crisis

As I reflected further on the past several years of crisis, I found myself writing, “Every step of this journey, has been one thing after another and those things have been huge, time-consuming, painful, and have resulted in all of us having memories which we would prefer not to. But, in all of this suffering, there is joy. After almost losing Mom last weekend, I saw her on Wednesday and she spoke seven words in a row to me- something I did not think that I would ever hear from her again. That was a good day. This entire process has taught me valuable life lessons- for example, to be there for Mom I have given up a significant portion of my income. I would rather be living paycheck to paycheck and be there for Mom than have all the wealth in the world. But, anyway when that notice came as a family we were trying to figure out how to continue providing care for Mom with my illness getting worse, Dad’s financial situation which we all knew was not good, my brother’s grief related poor choices which were leading him down the wrong life path, plus our usual life stuff- Kate being the mom of a toddler, Emily living in NYC and dealing with guilt of not being closer, etc. That notice changed everything for me- I stopped surviving and starting focusing on other things.” From this low point in the journey, I made a conscious choice to prioritize. I found myself with two mantras which have served me well: 1. Not my monkey and 2. This is a marathon, not a sprint.

Not my Monkey

Managing mom dying has taken considerable resources. We are lucky. There are five of us. For the first year, I wanted to be an active participant with all of it. From applying for benefits to funeral planning every part of it, I wanted to be involved in and helping with. But, we didn’t need five people on all of the tasks. Since my existential crisis and loss of faith, I have separate my monkeys from everyone else’s monkeys. For example, we recently had a situation that needed copious amounts of emails and phone calls. In this situation, there was not much I could offer to it. Rather than calling into conference calls and being an active part, I allowed my sisters to take the lead and had them merely CC me on the emails. In this way, I knew what was going on, but I freed up the time that I would otherwise have had to spend on the phone or participating actively. While they managed that, I spent time with Mom at the nursing home and helped with developing a new plan for eating. In another example, I am the weekday nursing home person. I am available during the week, so I visit on weekdays. On the weekend, I stay home and manage my own life. Sometimes I miss out on seeing extended family or visiting with my brother, but, I am able to have time at home to rest, work, grocery shop, etc. when I otherwise would not.

This is a Marathon Not a Sprint

We have limited time with Mom. In knowing that she is dying, it is tempting to spend every resource and every ounce of energy being with her. But, if I give ALL of my resources right now, I won’t have any for next month or next week. So, I have to prioritize and allow myself the ability to say “no.” Back when Mom was at home, I didn’t have many choices. The times and days I said I would be there she and Dad were counting on me. If I didn’t go then, Dad had to call out of work, or we would have had to deal with the agency and beg them to find someone to step in. Mom’s days were always harder with the agency, and there was enormous pressure to make sure that no matter what I was there. Now, even though Mom has skilled nursing care at the nursing home, I still feel these pressures. When I tell Mom I am going to be there; I show up. No matter what. But, it is on me to manage when I am going to show up and what I tell her. It is also on me to recognize and forgive myself when I can’t. It is a constant readjustment of boundaries, schedules, and knowing that if I have nothing left over, then I am no good to anyone.

Finding Myself

I can’t describe it accurately, but after losing my faith over the summer, I regained it. From that low point, I found a calm core inside of myself which I had thought I had lost- the “everything happens for a reason, and it will all work out” core. I like you try my best to find optimism in these dark places, and I must believe that 1.) everything happens for a reason, and 2.) suffering has meaning (a great life lesson from Viktor Frankl and “Man’s Search for Meaning

I do believe we get a happy ever after- we just have to redefine it. Happy every after in a new chapter without this most recent crisis lingering over our heads. Happy every after to enjoy those seven words in a row. Happy every after to make meaning from all of this. I don’t know yet- my higher power did not consult me and ask me for my permission for any of this, and the universe often provides these lessons in retrospect, so the jury is still out on the exact ending. But, I do think we get a happy ever after just not the one we would choose if we were asked.

For today, Dad can spend time with Mom after work, and they can enjoy each other’s company. For today, I can sit on mom’s bed with her, Red Sox playing in the background, and help her to remove her toenail polish and trim her toenails- lost in the comfort of being with my Mom. Ultimately, all we have is today.

In the words of the Beatles, “and in the end, the love you take is equal to the love you make.” We are blessed, as, despite everything, the one thing I know without a doubt is that love remains.

An Introduction to Anticipatory Grief

“He’d lived long enough to know that everyone handled grief in different ways, and little by little, they all seemed to accept their new lives.” -Nicholas Sparks

After Mom was officially diagnosed with PSP, I set about doing what I do- reading and learning everything I could about the topic. While this method works for me, I do not recommend this path to all loved ones who are in the PSP journey. Watching videos of people with late-stage PSP was incredibly hard, I curled up in a ball in my comfy chair, a box of tissues beside me, computer on my lap and tried to wrap my head around what was coming- and it seemed almost impossible. But, those videos haunted me and began to prepare me for the future. They also triggered my anticipatory grief.

What is anticipatory grief?

Anticipatory grief is grieving that begins before someone dies. In my case, the grieving began with the label of PSP and understanding that it is terminal, progressive, and non-curable. The symptoms of anticipatory grief vary from person to person, but, these symptoms are generally the same as those experienced after death. In my case, the feelings of anticipatory grief are complex and interwoven into the grief I feel watching my mom lose various abilities.

What do I need to know about coping with anticipatory grief?

  1. No two people will have the same experiences!  While I have experienced profound anticipatory grief, Medicine Net  points out that not all people have symptoms of anticipatory grief. In other cases, anticipatory grief might have the same symptoms of depression whereas for others the senses of loss might manifest as anger.
  2. Use your support system! I have a diverse and expansive support network of people which have helped me to process Mom’s death. In addition to my friends and family, I found a PSP support group online which has been critical to helping me to both process and learn about PSP. The Cure PSP organization has on online find support tool and Grief.com offers a searchable list of support groups throughout the United States. Finding support can be critical to processing and coping with anticipatory grief.
  3. Be gentle with yourself! When caring for someone with a terminal illness there can be days when it simply does not feel like enough. Between normal life responsibilities, care taking, and grieving it can be easy to slip into destructive behaviors or harmful patterns of negative self-talk. In these moments, learning to recognize the behavior and reminding yourself to stop and breath is critical.
  4. Give yourself the time! It is okay to feel exactly how you are feeling. Take a minute (or longer) and allow yourself to feel. Instead of choking back the tears give yourself the gift of allowing them. If you are feeling angry allow yourself to be angry. Stomp your feet, yell, tell God to “fuck off” if you have to. Then after feeding the feeling for a brief time, get up and get moving! Do something, anything!
  5. Seek professional help if you need to! Anticipatory grief can be overwhelming and can become increasingly complex. Some people find that a professional can best assist them through this time. If you find your grief becoming overwhelming or impairing your ability to function, then it might be helpful for you to see a therapist or join a professional support group.

 

Balance, what Balance?

“No matter how bad your heart is broken, the world doesn’t stop for your grief.” -Faraaz Kazi

On Weds., I went to go see Mom…my usual drive an hour one way and spend time with her…I have been driving an hour or so one way at least once a week for years now since this fall it has been more like 2 or 3 times a week. I get a coffee, find something good on the radio, hit 91 North and depending on the week, the month, or the day I drive and I cry, or I drive and I think, or I drive and try to tune it all out with NPR. Sometimes, my partner drives with me, and we talk, and I am transported back in time…back to before PSP. Sometimes, I am stressed and upset and angry and have zero patience with others on the road. Sometimes, I am in a good mood and can appreciate the beauty of Vermont. Other days, like last Wednesday I was a bit scattered, and before I left, I spent a solid fifteen minutes talking with my partner about balance.

In addition to mom, I have to manage the Crohn’s disease. Over the past two years, I have gotten progressively sicker and yesterday began a fairly intense new medication and more than likely I will have surgery this summer.I also work for myself from the comfort of home- this most days is a blessing. There is no way I would be able to be there for Mom or manage my own health without this freedom. It also means that on a fairly regular basis my phone is pinging away with work and I just want to throw it out a window and tell everyone to F-off cause don’t they get it? My Mom has PSP, and I want my life to stop for a while so I can spend as much time as possible with her. But, life does not stop just because we are going through this. My landlord still wants rent on the 1st of every month (although I will say he has been amazing at letting us pay late here or there when we have had to), my internet bill still needs to be paid, I still need to get to the grocery store, do laundry, attend to my partner (who is often neglected in this insanity that we find ourselves in), and be a participating and functioning member of society.

The question I posed to Ryan (the aforementioned partner) is how? How do I keep doing this? How do I find balance in the insane? How do I continue to maintain this when it is all-consuming? How do I get the time to weave, to knit, to sew, to take a walk, to do anything but work, care for mom, care for my health, etc. He replied to me and said, “you have been doing it for years, and you DO have a balance just right now it has been a little more intense.” I asked him, “do I go less often right now?” He said, “you do what you can live with.”

Wow, what a powerful statement- “You do what you can live with!”

The theme for the past two years has been- “no regrets.” I would rather be broke and have the wolves at the door, but, be present for Mom. I would rather go be with Mom then come home and work until midnight if need me. Then there are the days I just can’t. I just can’t do it, and then the feeling of regret, guilt, and conflict settle in my stomach. She never has ever said “no” to me.

One of my last memories of my mom before the PSP really took hold comes from July of 2015. I was in the hospital- GI obstruction, and I was not very okay. I was laying in bed watching television in my hospital bed with Ryan when my Mom walked into my room. I had not told her my room number or where I was in the hospital- but being my Mom, she figured it out. I was really out of it and ended up falling asleep right after she got there. It was the first real sleep I had. Knowing my mom was sitting next to my bed, standing guard over the scary shit gave me the freedom to sleep. I wish I had been more with it; I wish I could have gathered my energy and told her right then that even at 32 I had really needed my Mommy and I was so happy to see her. I felt bad because she drove all the way down to see me and the entire time I was there I slept. But, she knew that was exactly what I needed.

My mom needs us now in the same way. She needs us to be her voice when she doesn’t have the ability to talk. My mom needs our presence to give her peace and comfort. My mom needs us to be there and be present and just show up. But, I also need to make sure I have clean clothes, that the rent is paid, and that I eat more than a pop tart and coffee (at least sometimes). I also need time away from the pain and suffering. I need to do the things that fill my soul up and give meaning to life. I need balance in an unbalanced situation. So for today, today I will do my best to manage the medication side effects, work, life, and sometime in this day I will finish wrapping my loom and start a new project. I guess Ryan was right- I do have a balance even on the days it feels all consuming.

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