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

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.