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…