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.”

Taking a Break from Caring

“People tell you to keep your ‘courage’ up. But the time for courage is when she was sick, when I took care of her and saw her suffering, her sadness, and when I had to conceal my tears. Constantly one had to make a decision, put on a mask and that was courage.” -Roland Barthes 

It can be overwhelming and even a little scary to leave your loved ones in the hands of complete strangers. Even leaving a person with PSP (or any debilitating illness), in the hands of family or loved ones who do not provide daily care can be somewhat nerve-wracking. But, without breaks caregivers are at risk for burnout, increased stress, and fatigue.  In fact, when caregivers were studied it was  determined that they experience a 23% higher level of stress hormones than non caregivers.

Negative Impact of Stress on the Caregiver

Stress negatively impacts our thoughts, feelings, and behaviors. For example, WebMD notes that increased stress is linked to higher incidents of alcohol use and abuse, sleep disturbances, obesity, high blood pressure, heart disease, and diabetes. Even though we can feel guilty leaving our loved one in someone else’s care, it is critical to take breaks when we are able to.  Without these breaks not only are we at risk for the above-mentioned health impacts but also, caregiver burnout can lead to increased impatience with our loved one.

Taking a Break from Caregiving

Respite care is an invaluable resource which caregivers can utilize for a break. While some people find that twenty-four hour or week-long respite care in a facility is the best choice for a loved one- even finding one afternoon a week can be enough to reduce some of the fatigue and stress associated with being a caregiver. There are several options for respite care. First, family and friends are often willing to provide a few hours of care. Second, Medicaid, Medicare, and other insurances will usually cover a few hours of in-home care time.  The ARCH National Respite Network offers a comprehensive list of resources for finding for, paying for, and utilizing respite.

Walking Away

Once an alternative care provider is in place, the challenge becomes walking away. When you are the primary or even secondary caregiver, it can be very challenging to let go and give yourself the time away. I still remember the feelings of powerlessness I felt whenever I had to arrange for someone else to provide care for Mom. I constantly wondered how it was going?  Was Mom happy? Was she getting her needs met? After Mom asked for and went to the nursing home, my sister and I called the facility way more often than we needed to.

The first morning Mom was in the nursing home I had extreme difficulty letting go, I didn’t know if they were helping her in the way she preferred, I was anxious about her inability to communicate her preferences, I was scared that the staff wouldn’t be patient or nice to her. Eventually, I made a binder of Mom’s preferences and needs that she can use to communicate with people on the days where she is not able to clearly talk. The binder combined with other assisted communication devices and the fact that they now know her has helped me to let go. When Mom was home, talking with and explaining her care to new caregivers allowed me to feel more confident in their ability to assist her.

Resource

One of the things that helped me to let go and take breaks was the knowledge that the person taking care of mom knew her routines and preferences. During the years of in-home care, my Dad would leave notes for the aides, and we would call at times. I talked about creating a worksheet and document about Mom’s needs, but, time was never on my side. The following is a worksheet that I wish I had developed for us to use when we left Mom in someone’s care: Caregiving Break- Worksheet  (PDF Printable Version). 

Caregiving Break- Worksheet

 

Hold On Pain Ends

“Hope is the thing with feathers That perches in the Soul” -Emily Dickinson 

When faced with hopeless situations it can be tempting to give up. In those moments, an acronym for hope comes to my mind: Hang On Pain Ends. When I was growing up one of the pieces of advice, my Mom often gave me was, “don’t make a permanent choice in response to a temporary situation.” In moments of despair, profound grief, and well hopelessness it can be tempting to throw in the towel and give up. But, it is precisely in those moments when sometimes all one has to do is hold on.

Hold On

Holding on for me means doing the best I can with the situation in front of me. Some days, the best I can is merely showering, eating three meals, and not entirely losing my shit. Other days, the best I can is being present for the people in my life and giving back to the universe around me. When life happens, and I have to confront a hopeless situation it is the latter, not the former that sets in. But, in the confrontation of hopelessness, simply putting one foot in the front of the other can be enough.

There is a reason the saying, “it is always darkest before dawn” is a cliche. From states of hopelessness can come great joy and beauty. But, in our journey to the other side of pain, we have to hold on and face the pain.

Pain Ends

Think back to the last time your heart was broken, eventually with time, distance, and contemplation the pain left. Pain heals, ends, and changes. The worst pain we are experiencing today will eventually end.

One of my favorite stories comes from an alcoholic in recovery that I know. For this person, we will call him Joe, every day for over a year he was miserable sober. Not unhappy, not discontent, straight-up miserable. Then suddenly, one day, he wasn’t miserable. He was so shocked he called both his twelve-step sponsor and his professional therapist, he just had to check and ask what he was feeling. Joe had no idea when his misery would end. All he knew was that every day he was absolutely miserable. But, he had hope that someday maybe it would get better, so he held on and eventually after months of not giving up Joe was no longer miserable. This is not to say that some misery came back from time to time. But, as Joe recounts those time became less and less and less until eventually one day he simply couldn’t remember the last time he had felt miserable.

For me, HOPE is the acknowledgment that eventually pain ends (even if just for a moment), and healing is possible.

HOPE

Splenda Might Cause Crohn’s Disease Inflammation

“Splenda might have pro-inflammatory implications only if consumers have susceptibility to CD, potentially aggravating the severity of symptoms and flare-ups, which would be in agreement with observations reported by IBD patients” –Alex Rodrigues-Palacios and colleagues

It is no secret that people with IBD manage complex and shifting diets depending on their personal symptoms and disease state. But, new evidence suggests that all patient’s who suffer from Crohn’s disease might want to consider avoiding Splenda. A recent press release from Case Western Reserve, says that a recent study by researchers found that “the artificial sweetener sucralose, known by the brand name Splenda, worsens gut inflammation in mice with Crohn’s disease, but had no substantive effect on those without the condition.” In other words, the mice with Crohn’s had worse inflammation after the consumption of Splenda while the mice without Crohn’s had no significant inflammatory changes.

Why Might Splenda Increase Inflammation?

The research found two reasons for the link between Splenda and increased inflammation in the mice with Crohn’s.

  1. Splenda created increased growth of E. Coli which lead to increased bacterial penetration in them mice with Crohn’s disease.
  2. Splenda increased myeloperoxidase (an enzyme in white blood cells which kills microorganisms) activities in the mice with Crohn’s Disease.

What these two reasons together mean is that the E. Coli increased the myeloperoxidase activities as the mice’s bodies attempted to fight off the invasion. The pro-inflammatory disposition of people with Crohn’s disease resulted in the increased myeloperoxidase activity which resulted in inflammation and symptoms. As the study’s lead author Alex Rodrigues-Palacios, DVM, MSc, DVSc, Ph.D. notes “this study demonstrates that the sweetener induces changes in gut bacteria and gut wall immune cell reactivity, which could result in inflammation or disease flare-ups in susceptible people.”

Alternatives to Splenda

For patients with IBD natural sweeteners might be a safer alternative than Splenda. Healthline points out that Stevia, Erythritol, Xylitol, and Yacon Syrup are alternatives to Splenda and sugar. But, Erythritol, Xylitol, and Yacon Syrup can all cause digestive problems. Therefore, for patients with Crohn’s disease, colitis, and other gastrointestinal disorders the best bet might be Stevia or natural sweeteners such as honey, maple syrup, molasses, and coconut sugar.

The Study

You can Click on the link to access the full text of the study, The Artificial Sweetener Splenda Promotes Gut Proteobacteria, Dysbiosis, and Myeloperoxidase Reactivity in Crohn’s Disease–Like Ileitis

Further Reading

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).

Fatigue and I

“When we are tired, everything seems so very much worse” -Jane Green

The other day I woke up with negative spoons. For some Crohn’s patients, my reference to spoons is an all too clear reminder of Christine Miserandino’s article, “The Spoon Theory” written about her journey with Lupus. Miserandino’s story of spoons is her attempt to explain to her non-sick friend what living with Lupus is like. In the story, Miserandino compares her daily journey to spoons. In this compelling story, Miserandino says that people without illness have unlimited spoons to do whatever they wish with while those of us who have illness have a limited amount of spoons with which to navigate daily life. I absolutely hate, detest, loathe, and can’t stand when I have limited or negative spoons. For me, it is the absolute worse part of managing illness and one that I would much rather do without.

In completing research for this post and reading about fatigue and IBD, I became increasingly agitated and pissed off the best solutions to deal with fatigue are 1. Manage IBD, 2. Check for Anemia, 3. Manage psychological symptoms, 4. Improve the quality of sleep, and 5. Investigate medication side-effects as a potential for causing fatigue. While it is important that people with IBD pay attention to all five of the aforementioned recommendations, as someone who deals with persistent and at times debilitating fatigue, I will say that none of them have done much to alleviate mine.

The reason why fatigue makes me so angry is that it is the one Crohn’s symptom that I cannot push through. It is the one Crohn’s symptom that stops me in my tracks. I live in with daily pain, and I have learned how to work through the pain. I can have a partial bowel obstruction and still function as a participating member of society. However, when fatigue hits there is absolutely nothing I can do to make it go away besides stop, and the last thing I want to do is stop. For me, having to cancel plans, not do something I am looking forward to, and having to choose how to spend my limited energy is mentally and physically exhausting. I equate fatigue with my body failing me, and I hate how I feel when I want to do something but just can’t. I also hate that for me I have to make choices every day about the tasks that I want to complete- do I want to do laundry today or shower? Do I want to spend time with my family today or work? Do I want to cook dinner and save money or do I order out so I can clean my bathroom? Sometimes, my house is a mess, and there is a daunting tower of laundry staring me down, and I don’t want it to be that way, but, I had to make choices to either work, see family, clean the house, do laundry, get groceries, etc. and I just didn’t have anything left over to put into the mess or the laundry. When I cannot do something because my body has decided that it has reached its limit I just want to scream. Especially, when that something I want to do is at 10 am, and I cannot believe that I am already so exhausted.

I highly doubt anyone likes having limitations and I know my general detest for fatigue does not help me cope well with this symptom. I know that my own emotional process with fatigue makes me more likely to be cranky when I have it, and I also know that for me, some days will be easier than others and I must allow myself to throw the fatigue-related hissy fit so that I can then manage it. I am a big believer in stomping my feet and just getting the anger out.

I do not have to like dealing with fatigue, but I also have zero choices in the matter. So, I spread my energy out through the course of the day, take a nap in the afternoon, and consume copious amounts of coffee (I know coffee is bad for IBD and fatigue is bad for paying my bills!). I also manage my fatigue through letting others in my life know when my spoons are running a bit low. Even though I (like most people) do not always like asking for help, I also know that asking for help allows me to live my best life. When I alone do not have to manage it all by myself life becomes better.

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