Category Archives: compassion

Say “Uncle”

Say “Uncle”

When I was a kid saying “uncle” to someone was the verbal equivalent of waving the white flag of surrender. My actual uncle took great pride in hearing the kids in his life scream or giggle cry that in the middle of a tickling frenzy. The tickling got way out of hand. It turned into a battle of wills between the victim and their own bladder. Many of us lost the internal conflict, there’s only so much tickling a kid can take before they spring a leak.

Similar games were played in my uncle’s pool. This added a whole other level of danger to the activities. There were multiple near drownings. Then there was that time when my cousin got chased by an angry swarm of hornet’s after he disrupted their nest. That wasn’t actually my uncle’s fault, it just happened in his yard. Joey had more than 30 reminders of that calamitous event. Eventually the swelling went down and the pain subsided. It was most unfortunate that some of the hornets found their way into his swim trunks. I bet he still can’t pass a nest without a flashback.

My Uncle was a loud, gregarious, larger than life personality. I remember childhood holidays spent at his house with a heady cocktail of emotions. Angst and wonderment were abundant in equal measure. We were amazed by the gourmet chef inspired meals and horrified by the table topics at dinner. It was a hazing ritual with elements of cannibalism and we all wanted to avoid the hot seat.

For the bulk of my childhood, Uncle Jack was married to Aunt Dolly. That marriage went off the rails some 30 years ago but the memories remain. Aunt Dolly was from the South and her mother Mimi made the trip North at least twice a year. I loved their accents and their sweet smiles. I had never heard of ambrosia until they came along. Who doesn’t love tiny marshmallows in a salad that doesn’t even pretend to be healthy.

Aunt Dolly told me I had a face like Venus, the Goddess of Love. She said that when I was in the height of my awkward ugly stage and no one was sure if it would all work out. She gifted me with a ray of hope that I would not always be an unattractive lanky tween with buck teeth and stringy hair. She saw my potential and it wasn’t just looks. She noticed when I did more weeding than the other kids and argued with my uncle to better compensate me. She paid attention to me when no one else did and I will always cherish her for that.

We spent a lot of holidays at my uncle’s house growing up. He had the big house with the pool and plenty of space. They had an Atari gaming system which was the sh*t in the early 80s (Breakout and Space Invaders, the best). I was usually by myself because the other kids divided into two groups of two. My brother with our cousin Joey and my cousin Jenny with Tammy, Dolly’s daughter from a prior marriage. They weren’t particularly mean, it was just clear that I wasn’t in the mix. By this point, I learned to read people and saw myself out before anyone else could make the suggestion. I split my time between Atari and my grandparents.

Meal times were the absolute worst. It was like a twisted family style version of Survivor minus the camera crew (or the exotic location). Most of the adults were inebriated by the time dinner was on the table. Dinner time always got pushed back to some ridiculous time like 9 or 10 O’clock, apparently drunk people are lousy at keeping track of time. My uncle was a fantastic cook so that offered some redemption.

While we ate, the topics would vary between politics and religion. If those topics got stale then someone at the table would be fodder for the discussion. This was awful. My uncle would spew merciless hateful nasty comments at whomever had the bulls eye. It was usually, Tammy. We were all too scared to speak out against him. This was his house, his food, his f*cked up show. I wish I could go back to 10 year old me at Christmas Dinner and say “what is your problem man, why do you need to pick on a 12 year old every damn holiday”. No one did that, that girl was verbally abused at 90% of holiday meals. I’m ashamed for all of us.

Like most people, my uncle wasn’t all bad. He was always thoughtful when it came to gifts for my brother and I. One year he gave us 10 speed bikes for Christmas. For our birthday, he gave us season passes to Great Adventure. Those gifts meant the world to us and gave us experiences and mobility that we would not have had without his generosity. I know he helped my mother financially from time to time, despite their thinly veiled animosity.

My mother hated my uncle. She would lash out from time to time but not enough to stop taking us there for holidays. They would often spar in alcohol/dysfunctional family fueled debates that were horrendous to witness. My mother stopped drinking in the 80’s and our trips there stopped a couple of years later. They disagreed on everything from politics, money and the best nursing home for Nana. They have remained on non-speaking terms since my grandmother died in the early 90s.

I haven’t talked to Uncle Jack in years. After his second marriage dissolved we lost touch and eventually he moved to Florida with his third wife. I have some contact with my cousins and his daughter contacted me this past weekend to tell me Uncle Jack was asking about our side of the family.

Turns out the third wife was on an information gathering mission. Honestly, I’m not sure if my uncle even inquired about us. When we spoke on the phone she cautioned me that my uncle is “forgetful”, that is code for dementia. My grandmother (his mother) had dementia and his wife wanted to know if my mother showed any signs. I haven’t noticed any at this point and I passed that along.

My uncle definitely has some dementia, it was evident to me in the few minutes that we spoke. His wife told me that they plan to move from Florida to Delaware in about 6 months. I cautioned her that a move would be disruptive to him. I work with people that have dementia and change is a real struggle for that population. He will likely decline from that move and he won’t bounce back, they never do. She has family near where they are moving so I understand the practical points.

In the handful of minutes I had with my uncle, I told him things that I thought would be meaningful for him. Like how I always think of him when I hear “Blue Christmas” by Elvis Presley. He wore that record out every December. I also told him how he made the best mashed potatoes that I ever had and that I was not able to duplicate them despite my best efforts. He chuckled out those memories and I think they resonated with him, if only for a moment. I see a white flag in his future and it’s sad, uncle.



*Photo credit attributed to: This is the Front cover for the Single Blue Christmas by the artist Elvis Presley. The cover art copyright is believed to belong to the label, RCA Victor, or the graphic artist(s). Front cover of picture sleeve of original single release of Elvis Presley’s “Blue Christmas” (RCA Victor 447-0720)



Red Sweater Likes to Prank

Red Sweater Likes to Prank

I know we’re all crazy busy with the holidays. A quick, cute story from my day at the office. Bear in mind, my office is an Assisted Living Facility where my job is to bring joy to my clients. I’m a cynic by nature so some days I have to dig deep. Today was easy.

I took Helen to a Christmas Carol sing-along in the activities room. Sometimes it takes a while (a solid hour or more) to get my friend ready. Today she was dressed when I arrived. I think I heard distant trumpets blaring and the sound of angels singing at this good fortune. We were soon on our way downstairs.

We found a spot and got seated. A nice lady was playing the organ and the residents were singing along to carols. We followed along with the program which, thankfully had lyrics printed for all 33 carols. There was a tenor about four seats to my right who had an impressive set of lungs. Across the room someone was dressed as Santa. It was obviously a female Santa based on the boots and the range of her voice. I love it when people go all in to make things special. She was definitely all in.

After the singing there was cake. One thing I really enjoy about seniors is their love of sugar. Any occasion is an excuse for dessert. After cake, Helen and I stood and I hustled to make a clear path for her. A gentleman sitting to our left took a dramatic pause to put his right foot out in Helen’s path in a faux effort to trip her.

Helen gave him some side eye to which he replied “what, I didn’t feel a thing”. Upon closer inspection, I realized our red sweater friend had a prosthetic leg and a good sense of humor.IMG_3373.JPG

My Clients, A (Brief) Love Story

My Clients, A (Brief) Love Story

I don’t mean to brag but my job is better than yours. I started a business a few years ago to fill in the gaps for families. I run errands, let the dog out, greet kids at the bus stop, take people to appointments; a variety of services for people that need help. Sometimes it’s a one time deal, other jobs are long term. As the business has grown, it has taken a definite turn toward the more mature client. Most of my steady clients have been in their 80’s and 90’s, their families hire me to check in on them with a social visit.

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I have always been fond of the elderly, even as a child. My cousins would pair off during holiday gatherings and I would visit with Nana and Pop-pop. I loved their stories and their inability to filter themselves. Even as a kid, I found it refreshing to be around people that simply spoke their mind without fear of reprimand. This fondness has followed me my entire life.


I currently visit a couple twice a week. Ralph and Helen have been married for over 60 years and they still kiss each other goodbye and say “I love you” when one is going out without the other. These are usually outings to a social activity within the assisted living facility where they reside. Ralph is a frequent participant in Wii Bowling and Helen likes to beat me at tabletop shuffleboard.

The featured image for this post is the face of the card that they gave me the other day. Here’s what Helen wrote inside:


I adore these people.

Why Hospice?

Why Hospice?

I get this question a lot, why hospice? Why volunteer to insert yourself into the lives of strangers when they are going through a gut-wrenching experience. The answer is simple, because I can. I realize it isn’t for everyone so those that can, should. You couldn’t pay me enough to work with little kids or Hedge Fund Managers. For some reason, I can lean into this end of life situation.

I should probably back up and explain a little bit about what hospice is for the uninitiated. Hospice is palliative care. Comfort measures for someone who is terminally ill. This includes pain medication, durable medical equipment, oxygen, things that will provide pain relief for the patient. Hospice is not curative care. When a person gets transferred to hospice they generally have a life expectancy of six months or less. Hospice care can take place in an institution or at home. It is covered by Medicare.

When I was in my late twenties my Aunt was dying and she made me the executrix of her estate. She didn’t have much so that sounds a lot loftier then the actual task. Basically, I was in charge of making sure her final wishes were realized and distributing what monies and valuables remained after she died. She selected me for the task because she knew I could handle it and her sister would be too emotional. Through that process I got to know my Aunt better and got a glimpse into what it’s like to know you’re time is limited.

My Aunt was a chaplain. I couldn’t of asked for a better teacher to demonstrate grace through her final months. We had very direct conversations about what she wanted, I could ask her anything. I remember a particular conversation when I asked specific medical questions. I was frustrated that more wasn’t being done medically to cure her. She was young, 59, and she had an acceptance that was mind boggling. She got breast cancer in her 40’s and had a mastectomy, chemo, the works. I remember celebrating her 5th year cancer free declaring herself cured. A decade later she had leg pain while on a trip to Greece. When she got it checked out she learned that the cancer had metastasized. The younger and healthier a person is, the more aggressive the cancer. She understood clearly that this was her death sentence.

It was an intense time. At one point she broke both of her legs while bathing. We hadn’t finalized her Last Will and Testament yet so I raced to the hospital to have her sign it before she went in for surgery. That was an odd position to be in. It felt awful to put “business” as a priority before surgery and yet I wanted to fulfill her wishes if she didn’t survive. Remarkably, she made it through the surgery and got to celebrate one last Christmas.

Through this process I became aware that sometimes the person that is dying doesn’t have anyone to talk to. Sure there are usually family members and friends around but sometimes they need a buffer friend. Someone they can talk to with no skin the game. Someone who won’t break down because they can’t bare the thought of their loved one dying. A friend at the end who will listen without judgement or a history of emotions that can complicate a conversation. I sincerely wanted to be that person.

I was 29 when my Aunt died and the seed for hospice work was firmly planted. I knew that I wanted to get involved at some point. The next decade was divided between a busy career, starting a family, moving and health scares. Finally when my youngest was in Preschool, I signed up to train to become a Hospice Volunteer. That was 10 years ago.

In 10 years I have probably visited with 100 or so hospice patients and their families. Each case varies with some overlapping commonalities. The hospice team is consistent regardless of the individual workers. Hospice nurses and home health aids are a special breed.  They are on the front line of death every day and they face it with a humility and strength that amazes me.

As a volunteer, I get to select the cases that I am willing to take on, the paid help doesn’t have that luxury. Sometimes I get to fulfill that wish of being their confidante. Most of the time though, I just sit by reading a book at their bedside while they rest. This is also rewarding as it provides respite for their caregiver. Caregivers are stretched so thin, anything you can do to help them should be done without hesitation. I’ve met people that have cared for their spouse for a decade or longer prior to getting on hospice. That’s an incredible length of time to sacrifice yourself for someone else.

Sometimes you get a hard case, something that hits close to home and guts you. I had a patient about a year and a half ago that still haunts me. We were the same age, her birthday was one week before mine and she had a kid the same age as my son. I visited her for a couple of months. Once a week I would stop by, make her tea and give her a pedicure. We talked about everything and anything. If she asked me a question, I gave her an honest answer and she did the same. What can I say, it’s just not fair. Despite the pain, it’s rewarding work which is why I still do it.

Do you have questions about hospice? If you do, feel free to comment and I’ll respond. If it’s too personal, you can email me at – – if you do email me, please comment that you did so I get back to you in a timely manner. If you currently have a loved one on hospice, my thoughts are with you. I hope you can have the conversations of your heart while your loved one is still here. That is the gift of hospice, the ability to realize that time is running out, so say those words while you can.


Six Blankets

Six Blankets

I’m fighting a quiet battle within myself. Some might call it depression, I hesitate to use a label. A sad awareness is wrapping itself around me like a blanket which I keep shrugging off. It’s the state of the world and the sad stories that swirl around me like a thin fog that clings low toward the ground. I’m able to go about my day and do what needs to be done with the added presence of my unwelcome shadow.

Yesterday I went to a luncheon for hospice volunteers. I’ve been a hospice volunteer for a decade. I provide respite for caregivers of terminally ill people. I know that sounds depressing in itself….honestly, it’s rewarding work. After the lunch volunteers are asked to take blankets to patients on hospice. The blankets are crocheted by generous, kind souls that enjoy their craft. I volunteered to deliver six blankets to patients that share my zip code.

Each blanket is paired with an index card with pertinent information about the intended recipient. Name, address, phone number and helpful hints like the neighborhood name or the patients age. It’s recommended that you call the families first to see if they want to accept the blanket.

I made 6 calls and I got mixed results. Mindful with each call that this family is suffering on some level. It is impossibly hard to watch someone you love die before your eyes. It’s also an incredible gift to have some notice about the situation. Words can be spoken that otherwise might be left unsaid. I try to approach each communication with a blend of compassion and lightheartedness. I don’t want to add to the melancholy nor do I want to be overly cheerful, it’s a balancing act.

First Blanket – I left a message explaining that I had a crocheted blanket as a gift from hospice and left my phone number. I haven’t heard back which isn’t unexpected, they have a lot going on.

Second Blanket – I spoke with someone on the phone and they said sure drop it off.  I headed over after I picked my kids up from school. After ringing the doorbell, I  was told to come in. This is common. People are so busy caring for a terminal person they often leave the door unlocked for scheduled deliveries, home health aids or visitors. I handed the blanket to the caregiver and smiled and waved to the patient as I let myself out.

Third Blanket – My kids are still in the car, these are local deliveries. This was a house I was familiar with having just sat with the patient last week. They had a screened in porch so I left the blanket nestled on a chair and let myself out. I spoke with the caregiver later that evening and he thanked me for the blanket.

Fourth Blanket – Someone answered the phone when I called and gave a reluctant OK to the blanket. I don’t know if I spoke to the patient or a family member. The property was stunning with an Old World European curb appeal. This was a house with multiple doors which happens quite often. I chose a door which had a wreath on it, it was not answered. I channeled my inner MacGyver and fastened the blanket to the wreath with little more than stubborn determination. I took the kids home after this, our third, delivery.

Fifth Blanket – I spoke with the patient’s daughter on the phone. She sounded tense on the phone and promised to call me later. She left me a long voicemail this morning. She apologized for being curt on the phone (she wasn’t) and went on to say how hard it was to speak at work and what it’s like having a father on hospice. She was unsure if the blanket would be a welcome addition and I felt bad for adding to her burdens. She was a jumble of emotions and I’m still thinking of the best way to follow up.

Sixth Blanket – This was actually the first call I made and it gutted me. A composed gentleman answered the call and very graciously declined the blanket. He stated that the patient (perhaps his wife?) got one at chemo and there is just so much stuff around the house. I can vouch for the stuff – every hospice patient has a table full of items to keep them as comfortable as possible. Pain medications, body lotion, mouth wash, adult diapers, towels, wipes and an assortment of personal items. Things that would normally be kept in a bathroom or bedroom migrate to the kitchen or dinning room table. Most patients reside in a hospital bed in the living room of their home for convenience and to avoid isolation.

Prior to making the call, I put the address in my GPS. Then it dawned on me that this patient is half a mile from my home. The proximity was unsettling, more disturbing was the age, 58. That is young. I can count the difference in our age on my fingers. My mind takes this information and then I wonder if we have crossed paths. Does she have children? Do we shop at the same stores? Have I encountered this person at some point in our day-to-day lives? This patient, the one whom I will likely never meet…..she’ll stay with me. I’ll think of her when I drive past her house and I will say a silent prayer for her and her loved ones.

This is the shroud I wear from time to time. The memories of visits that I’ve had with patients that have passed. Thoughts of neighbors that I don’t know personally and yet I have some intimate knowledge of their situation. It’s profound and sad and somehow complete. This is the circle of life, a common path we are all on despite our attempts to deny it.

Death is the one universal truth. We will all die, each one of us. It doesn’t matter how much money you have, who you voted for, what country you’re from or what you believe in. Death doesn’t discriminate it comes for everyone. Everyone. So don’t be petty, hateful, hold grudges or act out of spite. It’s just a short ride on this spinning globe and then, who knows what’s next. I plan to use my time wisely with compassion, humor and then more compassion because that’s what we need. And somehow, by sharing these thoughts, my foggy companion has faded away.





Life Hacks for Surviving the Holidays

Life Hacks for Surviving the Holidays

Geezus it’s barely December and I’m already feeling the anxiety swell. So many events, gifts, decorating, cooking, cleaning and our family calendar is exploding. Trying to take a deep cleansing breath to prepare myself for the madness. Here are some things I may or may not do to get through the next month.

Refuse to get offended. That’s right, I won’t get offended over much of anything. Parties I don’t get invited to (phew I needed a night off), gifts I don’t get and people that say “Happy Holidays” instead of “Merry Christmas”. I think you need to tuck your privilege in if you get insulted by a salutation that doesn’t start with “Hey @sshole”, just my opinion.

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I will not force traditions. Traditions are great, until they aren’t. I make seven fishes for Christmas Eve. It’s a nod to my Mother in law who passed away in 2007. I am not Italian by birth so I was excited to embrace this as something my kids will reflect on later in life (thankfully they like fish). That one is a keeper. Seeing some variation of “A Christmas Carole” or the “Nutcracker” every year is repetitive and expensive so we gave it up.

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Speaking of traditions….maybe you are one of the millions who has that Elf on the Shelf creature living rent free in your home. Sick of moving it? We watched this in mid November, oddly enough the kids have lost interest in Dash.

Just say “No.” No is indeed a complete sentence which does not require further explanation. You really don’t have to go to every event that crosses your path. Or scale back if you are so inclined. I go to a cookie throw down each December. It’s a great time and people that bake need to bring 10 dozen cookies. It’s a fun competition and I still attend the party I just don’t bake 10 dozen cookies to cross the threshold. The hostess has cleverly turned this into a charitable event by encouraging non-bakers to donate to a local Ronald McDonald House. Everyone wins and there are still cookies.

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Back up gifts. This one has saved me a thousand times. Have some back up gifts on hand, already wrapped and ready to go. I keep extra gift cards, bottles of wine and a few generic toys and books on the ready in case it’s needed. It doesn’t have to be expensive just something to ease that awkward moment when someone  hands you an unexpected gift.


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Meditate. This always invokes an image of the Dalai Lama sitting crossed legged, breathing in exaggerated “Aaaaaaaaaaaaahs”. Sure that works but it isn’t the only way to meditate.

According to Psychology Today – Meditation is the practice of turning your attention to a single point of reference. It can involve focusing on the breath, on bodily sensations, or on a word or phrase known as a mantra. In other words, meditation means turning your attention away from distracting thoughts and focusing on the present moment.

Yesterday, I worked on a 1,000 piece puzzle. It calms me and clears my head. Your meditation can be anything – walking, knitting, exercise – as long as it takes your full concentration and shushes your brain.

Whatever and however you celebrate, I hope it’s great!



BINGO is basically Lord of the Flies for octogenarians. I took a client tonight, she lives in an Assisted Living Facility. They had door prizes, gift baskets and a 50/50 raffle. It was a sold out event at $20. a person plus the extra fees – dabbers, raffle tickets and additional boards. Ladies had their hair done, the nice cardigans were worn and I detected a bit of Old Spice in the air. This was a night out, it was festive.

I planned to get there half an hour before it started but afternoon traffic set me 10 minutes behind schedule. My friend was ready to go when I got to her apartment. She uses a walker so it’s never a fast hustle, more like a slow shuffle. We got to the registration table 5 minutes after it opened and we were in the first half of the crowd. It’s really important to get to these events early so my friend can sit within close proximity of her walker. She needs an end seat and 75% of the population at BINGO needed an end seat. I still move quicker than most of them so preferred seating was secured. I may have gotten some side eye from some of the residents, I pretended not to notice.

I got Helen settled and then went to the BINGO buffet to get some snacks. It always surprises me how they offer up all these high fat, sodium and carb filled options to a population which is most likely supposed to be on low-sodium or low fat diets. Whatevs, my blood pressure is fine. I loaded the plate with mini quiches, taco innards, pizza pitas, soft pretzels and mystery juice (it remains undefined with subtle notes of cranberry and institutional seltzer). Helen was happy for the pretzel and juice, I kept the rest (regret is setting in).

Back at the table I noticed the BINGO cards and instructions which included a coupon for a McDonald’s breakfast. This was a score since Helen loves their pancakes and sausage. I typically treat her to it once a week, saved myself $4.02 with that gem. That’s not all though there was also a notepad listing the contact info for the local politician that supplied the freebie. I kept flashing back to BINGO scenes from Better Call Saul.


There were 10 games to be played along with an intermission. The event was supposed to run from 4 – 6pm. We weren’t hearing any numbers being called until 4:45, the crowd was getting antsy. I find it interesting that these people that I see slowly, sometimes painfully shuffle through the halls, suddenly develop cat-like reflexes and hawk vision when BINGO starts. In the first 5 games, Edna, a “known gambler”, won twice. People started to talk in hushed whispers that don’t sound hushed when the hushers are hearing impaired. I could hear the chatter on the other side of the room. The host joked that Edna should be careful at intermission. Oddly enough, after intermission, it was announced that Edna donated one of her prizes to be auctioned off as another door prize. True story. I don’t know the full story on Edna and I still can’t figure out how she rigged the game.

Good news is Helen won a round in the second half. Well we both did as I made sure she was staying current. Unfortunately there was another winner for the same game. They resolve that by having each winner pull a card from a deck and the highest card wins. Helen pulled a 5, I knew we were screwed. She got a consolation prize, a certificate to the in-house beauty salon. She won’t go, she’s had the same lady do her hair for at least 30 years. She should trade it for a meal voucher. She just needs to find a neighbor in need of having her hair set and she’ll have some leverage.

The last game was a full card which is like a marathon in the BINGO world. Someone needs to complete an entire card before the game is over. I takes a solid 15 minutes. Doesn’t sound like much, but 15 minutes at the end of BINGO in a retirement home feels a bit like infinity. We powered through with minimal moaning. There was the sound of popping knees, various crackling noises and some whispered curses as people hoisted themselves up when the game ended. Helen and I managed to get a good jump on the elevator traffic and I got her back upstairs to her apartment. I’ll be bringing her some McDonald’s hot cakes and sausage when I visit again on Friday.



My Boring Life….

My Boring Life….

I’m bringing boring back. Too much crazy sh*t happening in the world, makes me want to cover my ears and scream “I can’t hear you!” Since people get twitchy when you cover your ears and scream in public, I’ll settle for a blog post. Here is a glimpse into my glamorous life folks, hope you have popcorn.

6am wake up so I can be a human alarm clock for my 12 year old daughter. Why do I do this well she wouldn’t get up otherwise so there’s that. Also, we don’t allow our kids to have their phones, the modern alarm of choice, in their room overnight and I’m too cheap and lazy to buy a stand alone alarm clock. I greet my grumpy tween and go back to bed for another blissful 30 minutes.

I manage to get the kids to the bus stop on time go back home. I don’t have to leave until 10:30ish for a client visit so I spend a few hours preparing for a fund-raising event scheduled for this weekend. I’m tracking down the people who haven’t paid yet to make sure they haven’t decided to ditch at the last minute. We have a wait list so it would be nice to get those people in if we can. I do a few promos on FB, some modifications to the donor sheet and a delivery of an auction item. Now it’s time to go to the job I get paid to do.

My visit today is to a 79 year old woman and her 88 year old husband. The woman, Helen, has mild dementia and her husband, Ralph, stays in bed most of the time. I am the entertainment. I am the social call for a lonely woman who struggles with depression. My goal each visit is to get her to eat and to stimulate her mind through some social activity or puzzles of some sort. I make her laugh through the inconvenient hardships of old age. She has a hate-hate relationship with her Depends which is something we talk about at length. She sometimes uses Vaseline or Desitin to relieve the chaffing the elastic causes at the leg openings. A couple of weeks ago she tried to put toothpaste on her nether regions. She’s in pain from a lifetime accumulation of injuries, aches and pains. The body wears out and it’s tough to witness. It’s worse when the brain goes along for the descent.

Most days it takes a solid hour to get my friend fed and dressed. Once we do that my goal is to propel her out the door and into the lobby. The community they live in has a front lobby that includes table shuffleboard. We like to play while eavesdropping on whatever is happening while we are there.

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Last Friday things got interesting when one of the residents went rogue and wandered off. Lorna is about 93 and walks fairly slowly with the help of a walker. Somehow she managed to slip by the front desk and get an impressive distance from the place. We were witnesses to the “chase” and subsequent capture. Then when I left, Helen and Lorna chatted about it.

After my visit I made a beeline for home, I like to be there when my kids get off the bus. Today it was just my son as my daughter had an activity. At about this time I got a text from the hubs….no words just this –


That’s his subtle way of asking me to buy something for him. I replied with detailed instructions on how to open the canister and proper gum chewing etiquette. No reply, sigh.

Soon after that request I get a call from my mother. She was supposed to have cataract surgery today but it got cancelled because some family member of the surgeon had the nerve to die. That’s pretty much how she spun it. In 13 minutes she covered a lot of ground mostly how overwhelmed she is and how she wants to move. I bought the house she is currently living in because for 8 years she bitched non-stop about the last place…..and so it goes.

I rush out to get kid number two from her afternoon activity and I have about 50 minutes to make dinner and catch up on email. Badda Bing Badda Boom I make dinner. Freakin’ magic I tell you. I never know what I’m going to make until it dawns on me that it is my job…..someone has to make dinner, oh that’s right, I’m that someone. I usually don’t have a plan and somehow it works out. Tonight was pan sauteed lemon chicken in a white wine reduction (yes I made it sound fancy – I basically threw sh*t in a pan) with green beans. It was pretty good, a solid 6. They can’t all be 10s.

Then I started to load the dishwasher from the sink backlog. As I was doing this task my phone rang so I asked my daughter to answer it. She she went into a complete panic….like the phone was made of Plutonium (Pu, how appropriate)….she did a total half ass job with the conversation. So for half an hour, my husband and I took turns calling her pretending to be looking for ourselves so she could practice. She hates me a little and said “maaaahum” the way that 12 year old girls do.

Time to take the oldest to soccer practice. Drop him off at the field and go home to feed 3/4’s of the family the meal that I dreamed up 20 minutes ago. I set a plate aside for my son so no one eats his portion. In the blink of an eye I’m back in the car to fetch the boy. I go to the practice field where I dropped him off at 5:30 and he isn’t there, neither is his team. I scan the field, recalling the shirt he wore to practice. I just bought it this weekend so it’s fresh in my mind. It’s a heathered blue, with gray tints, it has a pocket left side of the chest and a thin line of white around the sleeves and the waist, gray shorts. I keep scanning, there are 5 boys on the field, none of them familiar.

I call a friend, her son practices at the same park during the same time for a different team. She picks up her phone and warns me that I’m on speaker phone (because I am the friend you must warn) her son didn’t go to practice. I tell her I’ll update her later, I have to go and manage one “sh*t” and an apology as I end the call. I drive to another field at the park, wrong kids, not our coach. I call my husband, he instantly starts screaming about our son not taking his phone. I remained calm said he left his phone behind because he needed to charge it. I decide to circle the park another time and get off the phone with my husband because his panic won’t help me now.

I drive slow, wondering if practice ended early. Would someone offer him a ride? He wouldn’t take it. I know my kid unless it is my close friend whose kid skipped practice, he won’t get in a car. He knows I’m coming to get him at 7pm he will wait. I consider the pavilion and the play ground. Without a phone he could have lost track of time and decided to wait it out there. I glance in that direction, bunch of littles and their parents.

I decide that I will circle the park one more time, slowly and deliberately because I can not bear the thought of my kid gone. I can’t. I can’t imagine how parents of missing children get through 10 minutes let alone hours, days, months and years. It would consume me. I have to place these thoughts on the back burner as I look for my son with heightened concentration.

I see that new H & M shirt that I just bought on Saturday. Out of the corner of my eye, I see him and I park the car and exhale. I call my husband and text my friend and the world begins to spin once again. A few minutes later he comes to the car. He knows I was worried. He apologizes and tells me it wasn’t his idea to switch fields. Because that’s the kind of kid he is and I am so grateful.






Breathing Room

Breathing Room

I watched his breathing. At times it was barely perceptible other times it was labored, loud and had some shakiness to it. I hoped and prayed that he wouldn’t die during the three hours while I sat with him. It was my first time visiting, it got scheduled the way they usually do.

Initially the hospice coordinator sends out an email to see if any of the volunteers are available for a given case. She provides basic information; the day/time preferred, the town and a general synopsis of the situation. She’ll tell us if anyone else will be in the home or if there are pets and give an brief sentence about the condition of the patient. It’s almost always some form of cancer, the second runner up is COPD.

Usually the caregiver just needs to get out a few hours for work, doctor appointments or some other urgent matter. There have been several occasions where I relieved the caregiver so they could make funeral arrangements. That is such a sad and necessary outing. Once at a support meeting for hospice volunteers, a peer complained that the caregiver she relieved went out to play poker with friends. I don’t judge what the caregiver does with their time away. Providing care to someone who is terminally ill is difficult, if you want to take time off to play poker or have a beer, I am totally cool with that.

After the first email goes out, volunteers will alert the coordinator if they can take on the case. Once that is done a secure, private message is sent to the volunteer best suited for the task. This confidential message provides more in-depth information about the patient including the name and number of the main contact. Then the volunteer calls that person to schedule the visit.

My initial call for today’s visit happened two days ago. The wife needed about 3 hours to run some errands and I told her my available hours. Ginny sounded tense on the phone, I could hear the strain in her voice. You might think that’s the norm but oddly enough, it isn’t. Most of the families I have dealt with have a poise and calm that I can only attribute to denial, exhaustion or some zen like state that I have not yet obtained. Ginny was how I think I would sound if our roles were reversed. We agreed to the schedule and I told her that I would confirm the morning of my visit just to make sure we were still on. This is a sad and necessary precaution as you do not want to ring someone’s doorbell and find out that their beloved passed away the day before. It happens.

I called again this morning to make sure we were still on. Ginny sounded the same as the first call and I gently repeated the agreed upon times. When I got to the house, I greeted their neighbor in the driveway. She informed me that she would relieve me if Ginny ran late. Then I let myself in through the back kitchen door. I announced my arrival and Ginny welcomed me from a distant room. This is not uncommon as the tasks of terminal care can make it hard to leave the bedside. I made my way to the correct room and introduced myself.

The next 20 minutes was a series of harried movements and Ginny’s out loud mental check lists and a final dose of pain medication before she could leave. In these moments I witnessed a love that was so sweet it broke my heart. Ginny crawled into bed with Bill and explained where she was going, who I was, and that she would be back soon. It pained her to leave his side though I could tell she needed to leave for her own sake. Just a couple of hours to not be surrounded by the inevitable death of a man she has given the past 47 years to, the love of her life.

In a private moment in the kitchen, Ginny told me that she didn’t understand why he was holding on. I asked if he was waiting for a visitor to say good bye, a final conversation? She said she asked him but he didn’t confide in any such need. Sometimes the body lasts longer than you can possibly imagine, other times it expires in such a rapid decline even the most experienced hospice nurse doesn’t see it coming. Death is fickle and unpredictable even to the stewards who’ve witnessed it hundreds of times.

Ginny was finally able to pry herself away and I sat in the room with her love. Saying silent prayers, reading a book and keeping one eye on my bedridden friend. He was quiet until he needed to go to the bathroom. This was indicated with hand gestures and a reach for the portable urinal. A bit of panic always goes through me in these instances. My first concern is safety followed closely by privacy.

I’m not a nurse, nor do I play one on TV. I’ve been in the trenches and I can handle a mess. What I don’t want to do is accidentally cause someone with brittle bones to get a fracture by moving them the wrong way.  My Aunt had bone cancer and she broke both her legs trying to bathe herself, it was horrible. I think of her when I’m in these situations so I air on the cautious side.

We got through it without breaking anything and he fell back into a restless sleep. His agitation level at times made me wonder if he had just hours or days left. In the nearly 10 years I have been doing this I’ve seen many patients get into a state of agitation; flailing limbs, mumbling and a burst of energy followed by calm. This has happened in the last few days of life for many of the people I have visited as a hospice volunteer.

I’m not sure if Ginny will call me again to sit with her husband. If she does, I will make room for her and Bill. I will take the experience with me and think of them when I drive by their house. It’s something I do often when I drive past the houses where I have visited my hospice friends. Sometimes it’s a single encounter, other times I spend months visiting on a set schedule. Every experience is sacred and is something that becomes a part of me. The sad truth is, we are all going to die. The hospice patient just has a little advance notice.



My Other Mother

My Other Mother

I recently had an experience where I caught a glimpse of my mother from an outsider’s perspective. It happens sometimes and it reminds me that my mother is a multi-dimensional person. Just like the rest of us…she isn’t all bad or all good, she’s a complicated mix. I have written quite a bit about the bad stuff – the drunk, raging, dysfunctional mother and now I want to share another side.

A few days ago, I had lunch with my “other mother” at a student dinning hall at the University of Pennsylvania. When she 40 she decided that she wanted to go to college and prove to everyone that she wasn’t stupid. She started local at a community college where she aced her way through two years and graduated with induction into Phi Theta Kappa.

Her grades and her personal narrative were so compelling that she got a scholarship to the University of Pennsylvania. Her initial thought was that she would complete her B.A. with a law degree as the ultimate goal and somewhere she switched to history and psychology. She did graduate from University of Pennsylvania and attended one year of graduate school at Bryn Mawr College.

We found ourselves in Philadelphia for one of her doctor appointments. I insisted on driving her because she is not a great driver and I thought public transportation would overwhelm her. So we were walking from the medical facility toward campus and she mentioned that she wished she could give “them” more money. I turned toward her and said “what” rather forcibly……WTF was strongly implied. In my mind the coffers of the ivies is always so damn full and my mother is broke. She lives in a house I bought but she still has utility bills. She is on Medicaid and has no discretionary income, zero. Then she went on to say how she learned so much about women and other cultures around the world during her education. How her time there was a bit Dickens….”It was the best of times, it was the worst of times”. Clearly she just wanted to pay it forward to another woman that she will never meet and my tone softened.

I admit it, I am a hard ass around my mother. Impatient, suspicious, not trusting on any level, my armor is always up around her and I can be an obstinate jerk. I know this and I willed myself to be patient and oblige her wish for lunch on campus despite the growing list of sh*t I had to do that day. After all, I don’t know if she will get another chance to stroll down this particular neighborhood of memory lane and I didn’t want to begrudge her that request.

I could feel the pride of her accomplishment that hour. She went on about how this changed and that was the same. She wanted to eat in the hall of flags and peeked in on an event taking place in that room. That lunch she was reflecting on happy times and people that sadly have passed that helped her with that part of her journey.

During lunch I noticed that she was wearing her university ring. I got that ring for her as a graduation gift. I was in my early twenties, going to college and working two jobs to support myself. The money I used to pay for that ring was based on serious sweat equity and sacrifice. She told me that day it was the nicest gift anyone had every given her. I guess we both had something to be proud of that day.