Missing Meemom...

Life without my mom is difficult to say the least. I miss her dearly and still have that horrible crushing sensation in my chest when I wake up and realize she is not going to be a part of my day. I do not want to make my life about surviving without my mom and I am sure in time it will stop being that, but right now I am just holding on. My days are falling into a routine which is a good thing but for some reason makes me feel trapped. Perhaps because life with my mom was anything but routine!—we did a million things on a whim or simply to say that we had done them. My mom really lived and when I have moved on to the next part of my journey I want my kids to smile and say the same of me. Throughout her entire life, my mom made things fun for us girls and it is not until now when I look at my own children that I realize she did it for her own happiness as much as for ours. On rainy days she used to strap on roller skates and we would take a few spins around the dining room table, never giving a thought to the scuffs on those beautiful hardwood floors or the last minute camping trips when she would throw a cast iron skillet in the car and we would be on our way! My mom did these crazy things because she knew that her daughters would find it fun and exciting, the idea of an adult just throwing caution to the wind. Although she taught us to be responsible, self-sufficient and considerate she made sure we knew that life was meant live.

My children are starting to come to the realization that their grandmother is not coming back. The questions about Heaven are more frequent and more detailed. They want to know where their grandmother is and why she is not returning. These moments are intense and border on impossible. I hate to look into my children’s beautiful eyes and see the comprehension of death and all that it brings. I can’t think of anything more painful than watching the look in Connor’s eyes as he comprehends. I see his eyes well up and his lip quiver and I know that he understands and is trying to adjust to such a loss.

Yesterday was a very warm Sunday afternoon and I brought the kids to play outside while James was grilling. Usually, James will be outside grilling while I finish odds and ends in the kitchen and the kids play in the living room. For some reason, since my mom died that ritual just seems unacceptable, so I hustled the kids outside to play while I sat on the patio with James. During our conversation James opened the grill and managed to get a face full of smoke that made his eyes tear. Cadence wandered over to ask James why he was crying and he told her that he had a little bit of smoke in his eyes and that made him cry. Satisfied, she went on to ask about an old scar that he has on his neck from a surgery performed when he was treated for thyroid cancer several years before we met. It has always been there and is fairly noticeable, but for some reason Cadence never saw it before this day. “Daddy, where did you get that scratch on your neck?” she asked. We explained about the scar and how it was just a mark left from having a booboo fixed and then watched as she thought this over. “Did a doctor do that?” she asked with “doctor” sounding like “docker” in her little voice, and when James told her yes a doctor had fixed the booboo for him she looked to me. “The docker didn’t fix Meemom.” I smiled sadly at her and explained that sometimes people are too sick and a doctor just can’t fix it. The thought of my mom missing her granddaughter growing up made me cry once again for the loss. Cadence looked at my tearing eyes and asked simply, “Mommy, why are you crying?” I told her it was because I missed my mom and she looked closely into my eyes and asked “Do you have a little bit of Meemom in your eye?”

I guess I do…

Chicken soup in heaven...

A bit of time has passed since my mom’s funeral and each of us is trying in our own way, to go back to our lives and make them as normal as possible. This is no small feat as my mom was such a huge part of everything we did. Dana and Dan continue to make renovations to the house they shared with my mom and my mom’s brother and sisters have headed home. James has gone back to work and I have put my children into daycare for the first time in their young lives. I chose a facility down the road from my office on the recommendation from a coworker and lucky for me she was right about how wonderful it is. My kids fell right into the routine of daycare life but it was a bit more difficult for me. James is out the door before 6 am and home around 8 pm, leaving me with breakfast and dinner and all those things before and after. I think I am doing okay with it and only screamed myself hoarse 3 days out of 5 that first week and dinner was mostly take-out. The next week got a bit better and the screaming was replaced by hysterical crying after the kids went to bed and before James got home and dinner stepped up to home-cooked frozen dinners.

The weekends seem to be the most difficult for me. I miss her the most on Saturday mornings when I would have talked to her on the phone for an hour before I got the kids dressed to swim at her house where we would talk for several more hours. I know that I will miss something about her each day and the ache I feel when I think of her being gone will never go away, it will just become a part of who I am, just like loving her is a part of me. The kids still ask when they can go to see her and I can feel the tears burning the back of my throat as I explain to them that Grandmom is in Heaven now and we won’t be seeing her until it is time for us to go there. Connor always asks if she went to Heaven because of the booboo in her brain and that is when the tears fall; big fat drops full of anguish because little boys shouldn’t know about these things. Those are the moments that I have to leave the room while I sob and beg God to please give her back.

My mom taught me that every event in your life is an opportunity whether it is good or bad is up to you. I try to use that advice when my brain won’t let go of the suffering. Although she handled it with strength and dignity, this disease forced my mom to suffer her worst nightmare before it took her away. It was a harsh thing to watch and those are the images that come to me in the dark when I cannot fall asleep. I can see her thrashing legs, her body twitching in pain as the disease ate away at her nerves and I can hear her voice slurred and breaking, asking Dan when she thought us girls were out of the room, why this was happening to her. Each time these thoughts come to drown me I remember Dan caring for my mom, I think of how wonderful it felt when I realized that for 26 years of her life my mom spent each of her days with a man who truly loved her; surrounded and loved by her daughters and grandchildren. My mom knew what she had while she had it and I remind myself that this is the lesson I need to take away from the nightmare. I need to focus on my own wonderful husband, the man who is beside me whenever I need him but always allows me to lead when I feel I must. Our beautiful children who we have come to realize are far more intelligent than we could ever hope to be, are the gifts that keep me going. When my mom was alive I would watch her with my children and think that they were born just for her. She loved each and everything about them. When I was mortified that Connor started telling anyone who would listen that his “pee-pee was getting bigger everyday” my mom simply laughed her wonderful laugh and said “Jodey, relax, men have been bragging about their pee-pees for hundreds of years” or when Cadence decided sleeping at night just wasn’t for her I could always count on my mom to come out in her pajamas after midnight to ride around the neighborhood with me until Cadence fell asleep. Thank God for the 2am Taco Bell drive-thru! It is a difficult thing to be outwitted, outlasted, and outplayed by your children but my mom always said “If both kids are in the car when you put it in drive you have faced and won half the battle.”

Tomorrow is the Fourth of July holiday and we still be having our annual cook-out at Dana’s house. We decided it wouldn’t be right to just ignore the holiday so we toned it back a bit and decided to forego the fireworks. Dana managed to get the pool clear by following my mom’s directions, throw in as many chemicals as it takes to get rid of the green and then have it tested so that the tech can tell you to run the filter continuously because you have too many chemicals in the pool. It works for us! I know it won’t feel the same being at Dana’s house without my mom but I can’t imagine being anywhere else. I love to see my kids with Dan too. During my mom’s illness they missed him as much as her and it feels good to see them playing and to watch him enjoy them. He walks us out to the car when we leave and tells the kids “I’ll see you later” just as my mom always did and I watch his eyes fill with tears as I start to pull away from the curb and the kids yell “I love you, Papa Dan.” It will be our first holiday without her but in all honesty the pain will be the same as any other day. We miss her and holidays don’t make that any better or any worse. Every place I go holds a memory of my mom. It makes it difficult some days to even run to the store for milk but again, I can’t imagine being anywhere else. Remembering my mom is never a bad thing and I know that as time goes by the images of her laughing and smiling will come before the hospital scenes. I am sure I will be able to talk about her to my children without choking on the words; I really need to be able to do that because my children deserve to remember her, to know that she always shined, she bought her dogs Happy Meals from McDonalds when she thought they looked sad, she never said no to a person in need, she loved and she really lived.

At the dinner table last night Connor asked how he could bring his bowl of chicken soup to Heaven without it getting cold. He explained that it wouldn’t help Grandmom feel better if it were cold. I explained to him that he didn’t have to worry because Grandmom didn’t need his soup in Heaven, because no one ever gets sick in Heaven. My heart ached as I watched his tiny mouth curve into that brilliant smile and he said “Then I bet Grandmom is the most fun person in Heaven, because she sure was when she was here!”

My God, how I miss her…

Never gone, never forgotten...

I arrived at the hospice to visit my mom for the last time and to be with my family during our greatest loss. I made the necessary phone calls to have my mom brought home and we stayed with her until the funeral home’s driver arrived. Dan lay in bed beside her, stroking her hair and it broke me inside to see his devastation. Later, when I left my mom’s room in search of a coffee one of the nurses at the hospice stopped me and told me she had to tell me what was in her heart. She said that she had been working in hospice care for over 25 years and that a family had never touched her heart as ours had and that each time she stepped into the room, the sight of Dan caring for my mom was enough to make her want to fall to her knees and weep. Her words brought me tears but also comfort; I know how she felt and was forced to admit the many times I had sobbed uncontrollably for Dan’s loss. When the transport for my mom arrived each of us girls stood outside the room to give Dan a moment alone before we proceeded down the hall toward the exit. Every nurse in the facility was lined among the hall to pay their respects and for the chance to hug us. It was fascinating to realize that in the 3 short weeks that my mom was their patient, we had managed to touch their lives by loving her just as they had touched our lives by caring for her.

Family and friends began to pour in from across the street and across the globe. We welcomed their comfort and took advantage of their help and support as we tried to survive the emptiness that sucks you in when you lose someone you love dearly. Funeral arrangements were made and the obituary was placed and all of us agreed that we would wear red to the service as a tribute to our mom’s memory. The color red symbolizes intense passion, courage and it was most definitely my mom’s color. We all split in different directions and scoured the malls for red blouses and dresses. Dana and I were on our way out of the Neshaminy Mall to hit a few other stores on the drive home when I got the call from Kelly, letting me know that Helen had made herself prime blog material once again. Kelly informed me that she had rode the escalator down in Boscov’s and when she turned to speak with Helen, realized that she was still at the top, sweating profusely while touching her foot to the first step and pulling back. “I can’t do it. I’m scared.” Kelly realized the panic attack for what it was and decided the best way to handle Helen’s moment of weakness was to call Dana and I so that we could laugh about it while Kelly walked to the UP escalator, crossed to where Helen stood and pulled her along on the DOWN escalator. You just gotta love Helen!

The afternoon of my mom’s service found my sisters and I, dressed in our various red dresses, standing beside Dan; his red shirt stood out boldly against his dark suit, the coordinating tie was straight and even, thanks to the help of his brother David, whose skill with such things always reminds me not to judge a book by its cover. Over our heads was a flat panel TV that looped a slide show of images of my mom during some of our favorite moments, as one image faded into the next the music flowed through the room. An image of Dana and my mom with their arms around each other and backs to the camera filled the screen as the lyrics to “In My Daughter’s Eyes” started; my mom’s favorite song came next, “On the Way to Cape May” while images of her at the beach with my children flashed across the screen. Each of us girls stood below, our heads angled upward watching the images of our beautiful mother while our stepfather kept his eyes to the floor, missing her more than he could bear. The first throng of people came through the double doors and we watched as they stopped to view the pictures; a beautiful blow-up of my mom and Dan when they took a cruise for their wedding anniversary and a poster size composite of hundreds of our favorite photos of my mom, each carefully arranged with the edges feathered and artfully blended into the next. I watched as people laughed at the photos and cried over the DVD images and knew I would never be able to thank the graphics team at mine and Dana’s office enough. They spent their own time putting together these images and their own money having them printed; the gesture was more than you could ask of anyone, but they did it for us. I realize now that I do not just share office space with my coworkers, but life itself. They followed us through my mom’s illness, praying for her, crying for us, stepping in to help with fundraisers when money got tight, they called in favors when we needed a care facility to place my mom and they never stopped listening. Now, they were here to grieve with us, just as family always is.

I watched; mesmerized as our family and friends began to fill the rows of seating and my eyes were drawn to my cousin Donny, whose sheer height alone lets him stand out in any crowd. I thought of his simple statement at dinner the previous night when he sat on the deck of my mom’s home and said easily to me, “Life is messy.” For some reason, that simple statement made things clear for me. The best times I have had in my life were always the hardest to clean up after. Physically and emotionally, life is messy, nothing is perfect, outcomes are uncertain and nothing follows that simple straight line, but in the end it all leads to love and family and the experiences you would never trade, regardless of the clean-up.

For the next 2 hours, my sisters and I would stand beside Dan greeting family and friends, thanking them for coming to pay their respects while we tried desperately to dodge the “lip-kissers.” These are the people that think it is acceptable to plant their condolences right smack dab on your mouth by coming at you with 2 puckered lips and the accuracy of a sonar-guided missile! It just doesn’t matter how much ducking, weaving or head-bobbing you perform, they just get you in the end and you are left to wipe your mouth, as indiscreetly as possible, on the inside of your shirt collar. As the line of people dwindled, we watched the funeral director cross to the podium with the priest, signaling that the services would begin and we were finally able to be seated. I listened to the words spoken and repeated the prayers on auto pilot until the priest concluded and asked for those who wished to speak to please come forward. A quick glance at Dan’s face confirmed that I would be the first to speak. I stepped up to the podium and looked out over the crowd and realized I would not make that mistake again. I felt tears burning the back of my eyes, heard the quiver in my voice and felt that deep, hollow emptiness that comes with the realization that you are alone. I wondered how I would say my peace if I couldn’t get passed that first sentence and then my husband was beside me. I felt the strength and comfort from him and knew that I would always have someone to stand with me. I continued to speak the words I had written for my mom…

My son believes that the stars in the sky are simply holes in the curtains of heaven where our loved ones look down upon us and enjoy our lives with us. As I put him to bed these last nights, I heard him whispering into the sky, “I see you seeing me, Grandmom” and I know this is the way he keeps my mom alive in his little heart, just as I will always hear her laughter in my own or see her eyes in those of my daughter and my niece, I will always witness her selflessness and sense of family in my sister, Dana; I will feel her strength and determination in my sister Kelly, I will observe her style and pride in my sister Christina and in my stepfather, Dan, I will always find her love.
My mom always told us that as her daughters we did not owe her our love or respect. She explained that she had chosen to bring each of us into this world for her own pure joy and that each of us should know that we had her love and respect as we moved through our lives. I never told my mom how much I loved her or about the respect I have for her; there was never any reason to because she already knew.
She is the woman who gave me strength and taught me determination, who showed me that a little common sense can go a long way and that life’s most difficult moments should always be handled with honesty, integrity and a little bit of pride. She has always made sacrifices for each of us and has shown me the woman I want to be. Hers were the words that made my voice; hers were the lessons that shaped my choice. In those last moments of her life I know how hard it was for her to let me go, to realize that each of her daughters had learned to stand. We will never forget the things she taught and will always have the strength her love brought us. We will thank God each day for blessing us with her love and for taking her home when her work here was done.
It was an unwritten rule at my mom’s house that you never said good-bye when you left because it meant you would never see that person again. So, I would just like to say “I love you, Mom and I will see you later.”

I took my seat to listen as Dan spoke. He thanked my mom for the values she brought to his life and told how her daughters would miss her and how much he would always love her. I touched his arm as he retook his seat next to me; the pain was too great to offer any more comfort than that. Dana and Kelly walked to the podium together and I heard Kelly start to speak and I sobbed as she thanked Dan for the care he gave my mom.

I believe each person in this world has a guardian angel that protects and cares for them, my mom married hers. My mom’s illness took her independence away from her one day at a time and the only comfort during it all was knowing Dan was beside her. He cared for her every need, became her legs when she couldn’t walk, her voice when she couldn’t speak. He wiped tears from her eyes, washed her hair and loved her unconditionally. In any marriage you rarely see what goes on behind closed doors, but during our battle Dan opened that door to each of us girls and I for one saw Dan through my mother’s eyes and the sight overwhelms me. I know that when I miss my mom the most, I can simply stand beside Dan because that is where she will always be. From all of us, thank you for everything, Dan.

Dana followed with a few short sentences and I knew in my heart that she could never speak all the thoughts that were in her heart. Her sadness is deep and the loss she feels seems to weigh so heavy on her shoulders that I am amazed at the strength she displayed in those brief words. It tore at me to watch her breakdown and to see her and Kelly turn to one another, just holding on.

Whether it is lunch at Red Lobster, shopping at Lane Bryant or discussing new ideas for renovations to our home, I will miss something about my mom each day of my life. She taught me to be my own person and showed me what I should, why I shouldn’t and when I must. Besides being an amazing mother she was my best friend and I am truly lost without her.

My mom has gone on to travel the rest of her journey alone and when our time comes she will be there, waiting to welcome us home.

A golden heart stops beating...

The nurse who took care of my mom that day asked casually if Dan was going to be up that night and when Dana explained that he was needed at work and would be there the next evening the nurse advised her to have him come as soon as possible and to assemble the rest of our family. I answered Dana’s call around 6 and she was forced to tell me that they believed my mom would not make it through the night, we had anywhere from a few minutes to a few hours, she had already called Dan. I made the remaining phone calls, gathering Kelly and Christina, our father and while I called my Aunt Cathy to ask her to get in touch with Bud and Debbie, James took a quick shower and my brother-in-law came to sit with the kids.

We piled into my minivan and met up with Dana and Helen at Penn Hospice. I walked down the hall to my mom’s room with Chris by my side, I was so focused on getting to her that it took me a moment to realize that Chris was dropping behind. I turned to her and saw the fear across her face, “I don’t think I can go in there.” she stated. I told her I would go in first and tell her what I saw and she could decide then if it was something she wanted to face. She nodded her head slowly looking passed me at the closed door to my mom’s room.

I pushed the door open and my eyes were drawn to Dana, she had pulled a chair up to my mom’s bed. She held my mom’s hand in her own and laid her head across my mom’s lap. I heard the shallow gasping sound and saw the slight twitch of my mom’s head before my brain realized those two things were related. The gasping sound of my mom trying to draw in air while her head moved with the effort; in that split second I started to take inventory of my entire life, all the things I had meant to say, projects I should have completed, actions I should have taken would never be put on hold again and I would always remember to appreciate what I had when it was there and not when it was gone. Her nail beds were blue as were her tongue and lips. Her eyes were closed as they have been for several weeks and out of habit I reached out to lift her lids and saw those blue eyes surrounded by red. It wasn’t like seeing someone with bloodshot eyes, it was as if her eyes had actually filled and instead of glistening tears I expected to see streaks of blood once the fluid overwhelmed her. I let go of her lids quickly and waited for the sickening fear in my heart to subside before I stepped into the hall to get Chris. I explained to her what I saw and hugged her tight before we stepped to my mom’s bedside.

I leaned over my mom and told her I loved her, one of the few times I have said that to her out loud. I told her she was my very best friend and that I would always miss her but that she needed to take care of herself now because we would all be fine. I never told her it was okay for her to go because I know that is a decision she will make for herself. I watched as Dan leaned his head against hers and stroked her hair, Kelly pulled a chair next to Dana while Chris and I sat across from them both, my father dropped to his knees at the foot of her bed and bowed his head. Helen tried to step back and away stating that we were her daughters and she didn’t want to be in our way; we pulled her close, into our circle where she belongs. Time seemed to stand still and the room was horribly silent; the sounds of my mom’s hitching breaths were so loud and so wrong. I held her hand in my own and stared at the blue pallor of her fingertips. The full realization of the impending loss weighed differently on each of us but it was something we shared all the same. I am not sure what everyone else thought of in those long silent moments but my mind wandered over the nightmares of my mom’s illness; placement of the feeding tube, the trach tube, the lumbar punctures, and the awful waiting and total confusion that comes with the diagnosis of a rare illness. When I was at my lowest, I forced myself to think of the life I shared with my mom and I knew in that moment that if I had it to do over again I would live the nightmare again so that this would be the woman I called mom.

My mom’s condition remained the same, around midnight we ordered some pizzas and started switching off to eat when it arrived, never leaving her alone. Dana did not move from the chair by her bed and later, when I finally woke her she had sheet creases across her head where it had simply dropped to the bed in exhaustion. She never ate and never let go of my mom’s hand. Dan continued to smooth her hair back and tell her it was just a bad day after he took a split second to devour a slice of pizza. The silence dragged on as we absorbed the shock of arriving at that moment but as time continued to go by the TV was turned on and the laughter began. It is strange how natural it felt to laugh in those moments. In the movies everyone is serious and waits until the deathbed occupant bestows on them, some beautiful words of wisdom that change their lives, but in life it is just not that way. For us, it was tears and laughter and more tears and more laughter that lasted through the weekend. We spent the weekend with my mom just as we did every other weekend of our lives and when she passed quietly Monday morning, alone, with Dan singing softly beside her, I knew we had all been exactly where she had meant for us to be,

Where are we???

The phone rang after ten that night and plunged each of us deeper into this nightmare. Dan had stayed at the hospital with my mom and called to let us know that she was having difficulty breathing and had actually stopped for a few seconds. The doctors had been in to explain that although we had a “do not resuscitate” order in place they wanted to inform us that they were not certain if the respiratory difficulties were being caused by the PML itself or from the case of pneumonia she had acquired. They figured that with this uncertainty we would like to reconsider that order and have my mom placed on a ventilator if she stopped breathing during the night thus giving us the opportunity to know for sure before we made our final decision. If only those doctors had realized what they were doing when they put this decision in our laps; if my mom stopped breathing and was hooked to the ventilator we would be forced to sign a paper to have it removed if it turned out to be the disease affecting her breathing. I don’t know many who have the emotional strength to make that choice much less put it into writing. As fate would have it my mom did not have any further difficulties throughout the night and was sent for a chest x-ray in the early hours of the morning.

The results of the chest x-ray showed that the pneumonia my mom suffered from had improved significantly and sadly, this is not the news we had hoped to hear. Facing the true reality of PML is a horrible chore and we have all stumbled greatly. After processing these results we agreed to follow the doctors’ advice and have my mom moved to a hospice facility. Dana and I did manage to find a nice facility within 5 minutes of our work and home and the Admissions Director told us he would have a bed available for mom in a week to 10 days. The hospital social worker sent in representatives from their hospice facility to evaluate my mom’s condition to possibly offer their services in the Rhoads building until the transfer could happen. Once the medical liaison for hospice assessed my mom’s condition she convinced us to have my mom moved to the Penn Hospice at Rittenhouse because she was afraid she would not be stable enough to be transferred to Statesmen Health Center, the hospice facility that Dana and I had chosen close to home.

Watching Dan pack up all of his and my mom’s belongings that surrounded her room at HUP was heartbreaking. He was hurting and you could feel the sadness radiating from him; you could see the loss on his face, a man losing the love of his life, the only future he had ever imagined. Still, the hardest thing in that moment was knowing that Dan was watching Dana and I and worrying about the loss we were experiencing. I always ache for Dan, I can’t imagine losing the partner you chose in life, for life. Dan has been with my mom for over 25 years and it is quite obvious that he loves her with all his heart. You can see it in the way he cares for her and the way he talks to her; he treats her no different than he did before she became ill. For Dan, my mom is still the woman he loves and the partner he chose; I grieve for his loss and love him for the way he loves her.

Penn Hospice at Rittenhouse is an excellent facility. The staff there is very considerate of our needs and care for my mom as a person, not a patient. My mom is always clean and comfortable and it is rare to enter her room and not find someone with her, talking to her. It is nice to watch the doctor speak to my mom and smooth the hair from her brow, instead of pretending she is not in the room while he informs Dana and I of her health. The medical equipment needed to keep my mom comfortable is subtle and worked into the background of the warm, homey atmosphere of the hospice. Our family is more comfortable in the hospice environment and we don’t have that strange resentment against the caregivers like we started to develop toward the HUP nursing staff. After meeting with the physician from Penn Hospice, Dana and I were shocked to learn that my mom was being overfed during her stay at HUP and as a result she was holding 40 to 60 pounds of excess fluid over her body. The physician was convinced that this was causing my mom great discomfort and was most likely responsible for her difficulty in breathing as she could not expand her lungs enough to inhale a deep breath because of the pressure of all the fluid and he also believed it was causing the increase in her secretions and coughing as the excess fluid backed up in her esophagus.

Over a few days at the hospice the swelling in my mom’s arms and legs was almost gone; her stomach was not as distended. She started to look like mom again; striking and beautiful. Dana and I attempted to settle in to hospice life, but despite the wonderful care my mom receives and the pleasant environment it’s not an easy task. The reason you are there is horrifying and tends to take away from the stylish paint and trendy décor. As we entered my mom’s room one afternoon we were greeted by a nurse who simply stared at us when we pushed open the door to her room. When Dana said her hellos to her she didn’t give the formal introduction of who she was and what she did for my mom that we had become accustomed to hearing. She looked at us, her face puzzled, a bit surprised and said slowly, “I think she is communicating with me.”

Welcome, everyone, to what we like to call SQUARE ONE…

In the long term...

Dr Schuster has agreed to proceed with the third round of T cell therapy. He has explained to our family that the disease has not only destroyed the myelin in certain areas of my mom’s brainstem but has caused damage to the nerves themselves; he has little hope for her recovery but even less hope of convincing Dana that stopping now is the right choice.

My mom’s illness has taught me that my sister Dana is a force to be reckoned with. She has a sharp, sarcastic nature that leads people to believe she is an intimidating presence, but the reality of it all is that she uses that sarcastic shield to hide shyness and a heart of gold. Dana spends all her free time at the hospital with my mom or finishing renovations on her home where my mom lives with her. She takes care of everyone under her roof without complaint and carries the burden of my mom’s illness not out of obligation, but purely out of love. My mom has been in the hospital for four months and I can only think of 4 days that Dana hasn’t been by her side. Sometimes I think to myself that my mom has to get better because it just wouldn’t be fair of God to take her from Dana

I honestly wish I had Dana’s faith in my mom’s ability to heal but I am just not that optimistic. I see my mom in that hospital bed and just can’t see how she will get better. How close do you get to Death’s door before they don’t let you turn back? It scares me more than anything I have seen in my life. I don’t want my mom to live this way but I am afraid of losing her all the same. The emotions that run through me are confusing and hurtful. Sometimes I think it would be better to let my mom go and the guilt that comes with admitting that is enough to make me choke and other times I cry myself to sleep and beg God to leave her here with me.

Dana and I have accepted the task of searching for a long-term care facility for my mom. Once the third cell infusion is complete there will not be any reason for my mom to remain at HUP. The idea of leaving HUP feels strange somehow. We have spent four months of our lives at this hospital, we have learned how they operate and what buildings connect to where, we have even found the secret staircase in the Rhoads building that leads right to the cafeteria! We know this hospital, as we leave during the 7pm shift change there are at least 15 nurses who wave and call us by name, we know that the Rhoads elevators are extremely slow, but the ones in Founders actually talk and tell you if the elevator is going up or down, the bathrooms outside the Pearlman Center are usually the cleanest and if you accidentally pull the nurses button in the stall a nurse will actually come to check if all is well. I can think of much better places for a home away from home, but this is what we know and in a time when everything is so uncertain it is hard to give it up.

The social worker on the 7th floor of the Rhoads building gave me a list of 125 nursing homes/acute care facilities within 40 miles of our home. I think it is possible that she is as horrible at geography as I am because a 40 mile radius landed us some choices that were at least a 3 hour drive! Because Dana is good with locations she took the task of sorting the list by the distance they were from our home and work. I then took to the internet, searching each facility to see if it could accommodate a patient with my mom’s needs, this process brought our list down to 32 facilities. A friend at work sent me a link to a news story she had seen about the worst nursing facilities in the country, this eliminated 3 additional facilities (and scared the hell out of me!). Another friend and coworker pointed me in the direction of the Joint Committee which inspects nursing homes and long term care facilities and grades them on a scale of 1 to 5 based on several health and safety factors. Through these reports you can gain access to anything from patient complaints to the results of the last fire marshal inspection. I took advantage of this information and used it to eliminate facilities that had complaints of patient abuse or high numbers of patients with bed or pressure sores. Sadly, this eliminated more options than I thought it would, bringing our list of facilities we wished to look at in person down to 9 with an additional facility recommended by the social worker.

AristaCare at Meadow Springs was a bit further away than we would have liked but we decided to tour the facility first because the HUP social worker had suggested it and the facility had already sent their medical liaison to evaluate my mom’s condition and confirmed that they could accept her immediately. Kelly and Helen agreed to tour the facility with Dana and me because the more opinions the better, of course in the case of AristaCare the vote was unanimous. The smell of human waste that permeated the entire facility including the lobby was enough to have my cousin Helen lean over me as I completed the sign in sheet and say “What the fuck are you doing? It smells like shit, we’re leaving.” As we toured the facility and were led deeper into the bowels of hell (at least that is what the bowels of hell must smell like) we encountered a load of grouchy nurses who seemed to have nothing to do except for one who was eating a sandwich; how she managed to eat with that smell is still beyond me. We were introduced to the physical therapist on staff and she was nice enough to explain to us that the level of care my mom received would depend on how much her insurance was willing to pay. I have to give her credit and state that she did try to remove her foot from her mouth when our jaws dropped but the conversation was pretty much complete by that time. As we passed a nurse in the hallway flushing a patient’s feeding tube the Admissions Manager offered to introduce us to the respiratory attendant. I took a quick look at Kelly as she came up behind me and the slashing motion she was making across her throat mirrored my thoughts; Helen and Dana still had their faces buried in their shirts, trying to escape the odor. I politely informed the Admissions Manager that it wouldn’t be necessary for us to meet with any additional staff and smiled as I asked if she could show us the way out. At that point the smile was more of an effort to calm my gag reflex than a show of manners and I really could not remember how to get the hell out of there; I am thinking now that is how the other patients ended up there in the first place! We stepped back into the sunshine and fresh air, greeted by a little, old lady in a motorized wheelchair who kept drawing us into conversation with comments about the weather. She rolled along behind us as we walked to our car and kept up the polite chit chat; I heard the motor on her chair kick into a higher gear as the automatic door on my minivan eased open. Now, I can’t be certain but I believe she was going to drive that chair right through that open doorway, if the curb hadn’t been so steep I am sure I wouldn’t still be wondering about her escape plans.

Shoot the moon...

Each night Dana and I leave our office in Newtown and steer my minivan to the ramp for 95 where we will spend the next hour or so in traffic before reaching the parking garage at HUP. When you live in the suburbs you find traffic in the city quite amazing and you believe that it won’t be as congested when you try it again the next day. After making this particular journey just about every day for 4 months, Dana and I have gotten passed those asinine thoughts. We have realized that there is no good time of day that will allow you to avoid traffic into or out of the city, but we have learned that the type of vehicle you drive has a huge effect on how you are treated once you are a member of that traffic jam. In our four months of commuting we have taken several different vehicles and I know it sounds insane but I strongly believe the validity of this statement, “THERE IS NO RESPECT FOR THE MINIVAN.”

In the first few months of my mom’s illness, Dana and I rode to HUP each day in my husband’s vehicle, a 2006 Pontiac Torrent. The Torrent is your basic small model SUV, nothing special, and when placed in the congested city traffic it is pretty much unnoticed. We just chugged along with the rest of the vehicles and never received a second glance. Dana drives a 2008 GMC Sierra, which is a big and beautiful pickup truck. You step off the running board and hoist yourself into the seat of this truck and spend much of the trip worrying about how in the hell you are going to get back down once you reach your destination. When you are stuck in the congestion of city traffic in this monster people notice and avoid you. Smaller vehicles tend to cut off the guy behind you rather than dare to edge themselves in front of you and when you attempt to merge spaces between cars just magically open like Moses parting the sea. When other drivers look back at you it is not to flip you off or curse at you, but rather to confirm the fact that they just saw two women in the cab of what is considered by society to be a man’s vehicle. I must admit that you do feel quite superior peering down into the cars of you fellow traffic jam patrons, but spending 2 hours crawling along with traffic feels much worse when you realize it costs you $80 to fill your tank and you only get about 17 miles to a gallon!

The Toyota Sienna I purchased last year has become the transport of choice when heading to HUP. The minivan can hold up to eight people which is great when we all want to go to the hospital but are too broke for gas and parking. It gets great gas mileage, rides smooth and even has DVD players built into the headrests of the front seats. The only drawback to our luxury mode of transportation is that a minivan just doesn’t have it in the way of intimidation. Much of our traffic jam time is spent being honked at, cut off, flipped off and for some reason we are the target of choice for the homeless panhandler who hangs out on the corner of Chestnut in a pair of brand new Columbia boots. Because I truly love my minivan I was reluctant to admit this, but after the ride into HUP this evening I am forced to face the fact that the minivan is most definitely the Rodney Dangerfield of vehicles, no respect.

Tonight’s traffic jam landed Dana and I behind a school bus full of rowdy middle school boys. They spent part of the time taking their shirts off and hanging them out the bus window or running up and down the aisle and jumping from seat to seat with no concern for the occupant. Of course, the realization that the minivan behind them contained two women definitely raised the amusement level and before Dana and I knew what they were up to the first of many skinny butts was plastered to the bus window. From the scene we saw Dana and I imagined the laughter on that bus was extremely loud and totally obnoxious. As Dana and I made a very good show of ignoring the scene we couldn’t help but notice a rather large, heavyset boy come up to the window. Thankfully, as he assumed the “shoot the moon” position traffic began moving once again. The bus driver pushed the gas, the bus lurched forward and our hefty, little moonbeam landed on his backside holding onto his pants. The laughter was once again extremely loud and totally obnoxious, but this time it came from Dana and I in the minivan. We laughed hysterically for the next 10 minutes and left an opening between ourselves and the bus, but for the first time in minivan history, not a soul cut us off! Traffic continued to crawl and the busload of prepubescent boys continued to stick their buns to the bus window until we passed a cop on the shoulder writing a traffic citation. Suddenly, we were faced with a well-behaved group of boys smiling and waving at us.

We changed lanes after passing the police officer and as we proceeded off the ramp that was our exit, I thought about how my son would most likely not be riding the bus to kindergarten come September!