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.
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.
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