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.

The Healing Power of Laughter

“Always laugh when you can, it is cheap medicine” -Lord Byron

I woke up tired again today. For me, waking up tired is one of the hardest feelings in the world. When this is combined with steroids, stress, and an inability to meet my responsibilities the days feel incredibly long. Yesterday, I yelled at my partner for cutting potatoes for French Fries into rectangles as opposed to using the cheese grater to make round potato chip like French Fries. Of course, this yelling resulted in my second crying meltdown of the day.

They say that people with Crohn’s ought to avoid stress. But, when the Crohn’s is resulting in decreased economic earning power, the difficulties of meeting basic life functions i.e. being awake long enough to do things like dishes, laundry, and showering, and there is the added guilt of not being physically able to spend time with a dying parent the emotional devastation gets to be a bit much. When daily pain is thrown in, and our diets become so restricted that even a simple meal becomes a challenge of extraordinary proportions it can be incredibly hard to focus on the big picture, hold onto to hope, or hell even smile at the insane. But, laughter truly is the best medicine and in these moments finding something to laugh at can make all of the difference.

Yesterday, my thing to laugh at was the need to be institutionalized. I felt as if my grip on reality was slipping, my emotions were a yo-yo of anger, frustration, grief, and fear which led to more than one moment of me crying while my partner kept telling me it was going to be okay, and while I knew that it was going to be okay in the moment I did not feel like it was going to be okay.

In response to a desperate plea for help my sister unknowingly made me laugh so hard I cried. After texting her that I was losing my grip on reality and that I felt as if I needed to be admitted to a psychiatric facility she replied with “well start with finding out if you can wean a little? And then get a referral to an institution.” For some reason, I just started laughing- perhaps there was nothing else I could do? But, in laughing, I finally had a little bit of relief from the emotional agony I had been walking through.

The Power of Laughter

Laughter has a myriad of benefits. Among these benefits are: stress reduction, immune system boosts, decreased physical pain, and improved mood.

Stress Reduction

High levels of stress are linked to decreased health. When we experience stress our hearts race, our breathing becomes faster, and our muscles prepare for action. During the time of stress, our adrenal glands release both adrenaline and cortisol which have negative impacts on our health. In fact, high stress has been linked to cardiovascular problems, headaches, stroke, body aches, and harmful behavior such as overeating and alcohol and drug abuse. But, when we laugh our bodies have increased oxygenation and our brain releases endorphins and neurotransmitters. The increased oxygenation can decrease the risks of cardiovascular problems as well as reducing the other negative impacts of stress on the body. Laughter also decreases the presence of stress hormones which lower immune response and lead to harmful behaviors.

Immune System Boost and Pain Relief

Endorphins are the bodies plain relievers. Like opiates, Endorphins attach to our brain receptors which can reduce pain as well as improve our overall mood. Not only does laughter result in decreased physical pain, but it also has been linked to immune systems boosts. Stress results in a chemical reaction in the body which lowers our immune response. In contrast, laughter releases neuropeptides which can fight stress and illness. Laughter also increases the efficiency of T-cells which gives a person an additional immune boost. Finally, the decrease of stress hormones that comes with laughter has its own immune-boosting effect.

Mood Enhancement

With the increase in endorphins that it provides laughing has a natural mood-boosting effect. We also can’t be angry or anxious when we are laughing. The Mayo Clinic says that laughter can also lessen depression and anxiety which will lead to us feeling happier. Laughter also helps us to shift our thinking from negative to positive. Through laughter, we can gain perspective on the situations and gain psychological distance from the depression, anger, or anxiety. With this psychological distance comes balance and a better ability to think positively about the situation at hand.

Health Benefits of Laughter by Jenny

How to Find Humor

For those of us living in hopeless or defeating circumstances, it can be challenging to find something to laugh at. Finding ways to find humor in the absurd can help to increase the presence of laughter in our lives. But, even if we are not in a place where we can laugh at the situation, we can find others ways to obtain the health benefits of laughter

  1.  Watch a comedy special or a funny movie. Netflix and Hulu both offer a range of options for comedy. If I don’t have time for an entire comedy special or movie, youtube has countless funny videos that can make me laugh in under five minutes. Start with a search for your favorite comedian, or terms such as “funny.”
  2. Spend time with funny people. My brother is one of those people who have zero ability to self-filter which leads to him saying the things everyone is thinking, but no one says. As such, whenever I spend time with him, I find myself laughing more than not. When I need a mood boost, Luke is always someone I can count on.
  3.  Fake it! Some Yoga gurus have already caught onto the healing power of laughter and in some practices fake laughter and breath work go hand in hand. Even though we might feel a bit ridiculous faking our laughter, eventually the mood boost of faking it and the absurdity of it will lead to real laughter.

The Devil’s Medication- Prednisone and IBD

“Sometimes I say the medication is even tougher than the illness” -Sanya Richards-Ross

I wrote a text to my sister this morning, “while I was showering I determined Crohn’s has turned me into a tired rage-filled hormonal chipmunk with acne.” For us IBD patients, this sentence is all too familiar. One of the more effective medications for IBD, just happens to be Prednisone. Prednisone, the stuff nightmares are made of. When Prednisone is combined with other medications and treatment it can sometimes make us feel like the disease itself is better than the treatment for it.

Throughout the decades I have had Crohn’s, I have been on many expensive “miracle” medications which have all promised to relieve the suffering that I experience. Sadly, for me, the majority of these have failed me. The fact that, for me, these medications have not worked has threatened my in general low-key and often accepting personality. For example, whenever I see an Entyvio commercial I find myself arguing with the tv. “Junk!” I proclaim, all Entyvio did for me is allow fistulas and abscess to form. Of course, my general anger at the TV, is probably due in part to the copious amounts of Prednisone I am currently taking while I, “wait and see” if Stelera (the newest, latest, and greatest “miracle” medication) works. This is not to say that biologics are all bad. In fact, I am so grateful for TNF inhibitors. I often wonder if these had been available to me when I first experienced Crohn’s symptoms, if I would have ever had to have my large intestine removed in the first place. But, like other contemplative processes, the “what ifs” can drive one crazy and in general I am grateful for and have never regretted having a proctocolectomy.

Prednisone

I both love and hate prednisone. In the middle of a flare, under-weight, in pain, and unable to function in daily life, I am always so grateful for the relief that Prednisone provides. In fact, of all of the miracle medications, I have ever been on the only one which has consistently given me relief has been Prednisone. But, with this relief comes a sacrifice and toll on both my body and mind. As I said to my sister, on Prednisone, I become a rage-filled hormonal chipmunk with little sleep, mood swings, and the development of other medical problems which come with their own treatments. For example, at seventeen I was diagnosed with Osteopenia which is a precursor to Osteoporosis.

Dealing with Prednisone Side-Effects

I am the first to admit that I am not always the most graceful at managing the side-effects which come with Prednisone. Recently, I was angry with my partner for an inordinate amount of time for no other reason than I was just angry and he happens to live with me. But, I do the absolute best I can, to not let Prednisone rule my life.

Support

While support alone will not take away the horribleness that can be Prednisone, it can make it easier. Helping my partner to understand how it feels to be on Prednisone and the associated rage/mood swings allow him to be more empathetic as opposed to angry that I am being such a, well for lack of better word, bitch. In addition to my partner, I use my girlfriends and family for comic relief and to check my rationality. It helps immensely that my best friend has also experienced the joys of Prednisone and she helps me to laugh about it often.

Food

One of the more infuriating Prednisone side-effects is a feeling of constant hunger. For those of us who have IBD, food is the enemy and being constantly hungry is not necessarily helpful. Furthermore, the weight gain associated with Prednisone hits hard and fast which can be not so beneficial for those of us who struggle with self-esteem as it is. To combat the constant hungry, I tend to keep foods I know are “safe” but also relatively healthy on hand. Yogurt, crackers, and smoothies become God sends for me. An added benefit of yogurt or other dairy products is the calcium which can help to mitigate the bone density issues related to Prednisone use. In addition to increasing calcium, some experts recommend the limiting of salt as water retention is one of Prednisone’s side-effects.

Self-Talk and Positive Thinking

Ideally, one can develop a way of talking back to the mood swings and other side-effects. When I find myself laying in bed crying because all I want is a turkey sandwich with both lettuce and pickles and know that eating it would cause a bowel obstruction it helps to tell myself that a.) this won’t be forever, b.) I can still have a turkey sandwich just no lettuce and no pickles, but, I can have bacon!, c.) I’m crying because I am on the devil’s medication not because I have real genuine feelings about the sandwich. (Although, I do have real feelings about the turkey sandwich just not ones that would typically result in sobbing, but that is a post for another day…). Reminding myself that this too shall pass and that someday I will taper off this medication and be back to my regular self-does help me to keep it all in perspective.

In the midst of joint pain, or weight gain, or rage it can be so difficult to remain stable and focused. But, for me, those side-effects, in general, outweigh the alternatives and I know that Prednisone is just a temporary situation to hold me over until the some-day that I will be able to taper. With that being said, I feel as if it would be irresponsible of me to release this into the universe without saying this: follow the directions of your doctors. No matter how bad the side-effects are, going off of Prednisone without a taper (especially if you like me have been on it for months or years) can have serious consequences. For more information about the importance of using a taper read “Prednisone Withdrawal: Why Taper Down Slowly” from the Mayo Clinic.

Additional Reading

  1. Prednisone Frequently Asked Questions
  2. IBD Medication Guide- Corticosteroids 
  3. Fact Sheet- Corticosteroids 
  4. Crohn’s and Colitis Foundation- Corticosteroids 

If you have any great tips for managing Prednisone side-effects I would love to hear from you in the comments!

Setting Boundaries

Boundary work is just as much about negotiating and asking for what we want and need as what we don’t want and don’t need. To this end, if we are working towards not just our own individual safety but towards changing the conditions in which people are not safe or are harmed, boundaries are about imagining radical possibilities as much as responding to events in the present.” -Cristien Storm

Every caregiver has their limits. My limit was toes. I had no problem helping Mom in the bathroom, hand feeding her, or helping her get dressed. But, trimming her toenails was my line, and I was not going to cross it. Until I did. Mom had her toenails painted through a loving act of kindness from an LNA, and a month later the polish was chipping and bothering her. So, she asked me to get nail polish remover and get rid of it. So, one sunny afternoon I sat on my Mom’s hospital bed, her foot in my hand and removed her nail polish. Once I got that all done, I figured why not, I’ll trim her toenails. With the Red Sox spring training game playing in the background, the spring sun shining through the window, I crossed my caregiving line.

I don’t know why trimming mom’s toenails was my line. For whatever reason, it was just the thing I decided I was not going to do. Kate, or an LNA, or anyone else could do it. It was not for me. But, in crossing my line, I connected with Mom in a powerful way. Somehow, sitting in her bed with her, listening to the game, and doing her toenails was comforting.

Boundaries

When we set a boundary, it is our way of telling others (and ourselves) what is and what is not acceptable to us. These boundaries can be physical, emotional, mental, spiritual, and sexual. The PsychCentral article, “What Are Personal Boundaries? How Do I Get Some?  highlights the fact that “love can’t exist without boundaries.” In caregiving, knowing my limits and boundaries has helped me to avoid burnout and fatigue. But, these boundaries also have been harmful when they have been so rigid as to block me from being open to new possibilities.

Examining Boundaries

Some of my boundaries are critical and help me to not only stay safe but also maintain my emotional health. But others come from misconceptions or lines I draw for arbitrary reasons. I don’t know why my limit was toes. But, by having this arbitrary boundary I was limiting the acts of love I did for mom, and in setting this arbitrary limit, I was avoiding an experience which ultimately connected me with my mom in a way that we both needed.


Who?

Just like we have varying levels of intimacy with different people, we have different boundaries for different people. For example, my physical boundaries allow for hugging close friends and family but not acquaintances. Asking ourselves what our comfort level and needs from the various people in our lives can help us to determine the “who” of boundary setting.

What?

When we clearly define what the limit or boundary is for ourselves, we can then communicate this more clearly to others. Asking ourselves what we need is a good first step in determining the “what” of boundaries. In addition to understanding what we need we can also ask ourselves “what else?” For example, if we are uncomfortable with hugging, we could ask for a handshake instead. As a caregiver, I at times have had to set boundaries with people in my life so that I can have the needed time to take care of me.

Where?

Just like we have different boundaries for different people, different places will require difference boundaries. Our boundaries are work look different then those boundaries we employ at home. Determine where difference boundaries are needed allows us to determine the location for each of the boundaries we set.

When?

Asking ourselves, “when do I need to set this boundary” is helpful for us to determine the timing of the boundary. For example, when my mom was at home, I had to set boundaries with work about contacting me when I was with her. While I was available to respond to texts, and emails on most days the days I was with her I found the influx of email notifications to be undue stress and pressure. I found that sending an email to my clients explaining that I not available on certain days helped to keep the extraneous emails at bay.

Why?

Understanding why we need certain boundaries can help us to determine what purpose the boundary poses. In my life, the boundary of “no toes” served to protect me from something which I had no need to be protected from. I was intimidated by mom’s feet for no other reason than my own misconceptions and personal feelings about feet which had no basis for my reality. When I stepped back and asked myself “why” this boundary was in place I was able to see that instead of protecting me from a true threat this boundary was keeping me from experiencing closeness.

 How?

In some cases, a boundary needs to be communicated verbally whereas in other instances actions can set a boundary. When we ask ourselves how we plan to set the boundary, we can choose the communication method that is most appropriate.

In setting boundaries, assertive communication is the most effective. Rather than telling someone what they should do, it is essential to focus on “I” statements and one’s own feelings. When setting a boundary with someone else, there is no need to apologize or over-explain our positions. Instead, we can keep it simple with an “I” statement such as: “I am not comfortable with hugging, can I shake your hand instead?” In other cases, we don’t have to communicate verbally. For example, if someone seeks to hug when we are not comfortable, we could use an assertive statement, or we could simply take action such as putting out hand out to intercept the hug and turn it into a handshake.

Putting it all together: Boundaries in Action

Once we understand the Who, What, Where, When, Why, How of our personal boundaries we can work to communicate these boundaries with others in our lives. Setting these boundaries with others allows us to work towards preserving our emotional and physical well-being.

Simple Steps to Create a Respite Plan

I tend to over complicate and over think the simple. For me, keeping it simple is an important way I preserve my energy and prevent burnout and fatigue. When we care for a disabled or aging loved one it can be challenging to take a break. I quickly become overwhelmed thinking of all the details involved in my mom’s routines, preference, medications, and daily living. Thus, when I think about writing it down into one document to share with her care team, I get overwhelmed. For me, keeping it simple involves a simple acronym: NICE. Breaking down respite planning into Needs, Information, Care Planning, and Enjoy helps me to remember the essential parts of planning for a break while at the same time keeping it simple.

Respite Plan with NICE by Jenny