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…