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.

Research Brief- Stem Cell Therapy for Perianal Fistulas

Fistulas and Crohn’s

Fistulas are sores or ulcers which tunnel through the intestine and into surrounding tissue. For many Crohn’s patient’s fistulas occur around the anus or rectum, but, they can occur throughout the digestive system. In an interview with the Journal of Gastroenterology & Hepatology, Dr. Julian Panes reports that 40% of patients with Crohn’s disease will be affected by fistulas at some point during the course of their disease.

Fistula Symptoms

The symptoms of the fistula depend on its location. In cases of a perianal fistula, swelling and pain are common symptoms. For some patients with a fistula between the bladder and rectum, urinary tract infections can occur. In other cases, waste can leak from the anus or vagina or seep through the abdominal wall.

Traditional Medical Approaches to Treating Fistulas

Unfortunately, fistulas are both painful and difficult to treat. Traditionally, patients with fistulas take antibiotics or immunosuppressants. But, in over 90 percent of patients who are treated with antibiotics, the symptoms recur, and the limited research indicates that immunosuppressants only help 25% of patients. If a patient is not responding to medication, they are referred for a surgical consult. But, surgery can be complicated, and in the case of perianal fistulas, incontinence can be caused due to sphincter muscle involvement.

Stem Cells

Stem cells offer new hope to Crohn’s patients with perianal fistulas. A safer option than surgery, stem cell therapy has been recently approved by the European Commission to treat complex perianal fistulas. For the treatment of fistulas, Alofisel (an allogeneic stem cell therapy) is a huge step forward as it is delivered via injection to the walls of the fistula tract and does not require surgery while at the same time healing the fistula and making remission possible.

Additional Reading

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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