After some serious discussion we decided that once my mom was again released from HUP we would take her home rather than try another rehabilitation facility. We visited the physical therapy center at HUP so that they could teach us a few things about how to care for my mom. We spent the afternoon practicing lifting her from the bed to the wheelchair and back. After a bit my mom told us she was done and I explained to her that we needed to be able to do these things before she would be allowed to go home. In turn, she told me she hated my guts and didn’t want to see me anymore. I understand her words come from fear and frustration and that she doesn’t really mean them, but they are a sucker punch all the same. I left the physical therapy wing to regain my composure and Dana told me later that things didn’t get much better. The physical therapist asked my mom to let them assist her in walking and she told them she wanted Dana.
“Do you want me to help you walk?” Dana asked her.
“No, why don’t you go walk.” My mom told her and went on to inform each of them that they were stupid and that she would not be walking that day.
Physical therapists are rarely deterred so they decided it would be a good time for Dan to practice sitting my mom upright. They proceeded to show him where to hold my mom as he moved her and reminded him to not lift with his back. Dan decided he had a better method and proceeded to climb onto my mom’s gurney and straddle my mom’s legs. “What if I did it this way?” he asked as he started to pull my mom’s upper body toward him in a bear hug. My mom managed an eye roll and told him to get the hell off of her while Dana and Chris started laughing hysterically. I have to give Dan credit; he is most likely one of few people to shock a physical therapist. “No, don’t ever do that.” the physical therapist told him. The stunned look on his face didn’t leave throughout the entire wait for transport to come and bring my mom back to her room.
Another night at the hospital and a clear chest x-ray brought us to discharge papers on Thursday afternoon. The moment Dana walked into the hospital room my mom was asking where her sneakers were. Dana managed to stall her long enough to get her prescriptions filled at the hospital pharmacy and have a wheelchair brought around. There were a few tense moments when Dana realized she had lost her car keys somewhere in the hospital and had to have Dan walk my mom to the car at a snail’s pace while she and my Aunt Deb ran wild through the halls until security called to let them know the keys had been turned in.
I am not sure if my mom was worried that the doctors would change their mind and make her go back or if she was just anxious to be on her way home after the long hospital stay. Whatever the reason, my mom kept telling everyone to hurry as they loaded her into Dana’s truck and Dan returned the wheelchair. During the entire “loading” process Dan repeatedly asked my mom if she was okay and she repeatedly told him yes and demanded he get in the truck. After being asked if she was okay for the millionth time my mom started screaming at the top of her voice. My Aunt Deb swung around to see what was wrong while Dan jumped into the truck to assist with whatever the problem may be. A smile played on Dana’s lips as her eyes met my mom’s in the rearview mirror. “That got him moving, didn’t it?” she said and Dana’s smile broke into laughter. It makes me feel good to realize how well we actually know our mom, some children miss the opportunity to really see their mother and know her personality quirks. Dana got the joke before anyone even realized that is was a joke, now that’s love.
The ride home was a bit horrible for all involved. My mom cried out in pain most of the trip and the sound was agonizing for everyone. Her back was causing her horrible pain most likely from not sitting so straight in weeks and soreness from lumbar punctures, I am sure the bumper to bumper traffic leaving the city wasn’t much help either. They made it home safe and sound and then the fun really began—furniture was moved to accommodate a new hospital bed, a wheelchair and a portable toilet. The hospital bed was too hard and an emergency run was made to Target for a foam topper and dog food, we were out! Sheets were washed, pillows were covered, the bed was made, waterproof pads were stored, medicines were separated and liquids were thickened to “nectar consistency.
My sister Kelly purchased food from the Olive Garden to celebrate my mom’s “homecoming.” I guess to most people looking in on the situation it doesn’t seem like much to celebrate but when you are faced with an illness like PML you learn to find the joy where you wouldn’t have bothered to look before.
That first night was rough and left all of us believing we had made the wrong choice, but we managed to get my mom settled and moved on from there. It took atavan and Percocet to get her settled but that’s not really cheating, is it? Situations like this are scary because you learn as you go and they are filled with the unknown. We are not sure how to give my mom what she needs and we do a lot of guessing and she calls us stupid when we guess wrong. It’s almost like charades meets a very harsh episode of the Gong Show. We all just keep waiting for that big hook to come out and pull us off stage.
Meals for my mom are a problem, she has difficulty sitting because of the back pain and we can’t let her recline too much because of the swallow difficulties. On Friday we tried a roast beef sandwich from Arby’s chopped as small as possible, as we fidgeted around trying to get everything in place to help my mom eat she decided she could wait no more and started grabbing roast beef off the plate and tossing it into her mouth. The fear of her choking left us all standing there like idiots yelling “Chew that, chew that!”
We are managing and hoping…
Physical therapists are rarely deterred so they decided it would be a good time for Dan to practice sitting my mom upright. They proceeded to show him where to hold my mom as he moved her and reminded him to not lift with his back. Dan decided he had a better method and proceeded to climb onto my mom’s gurney and straddle my mom’s legs. “What if I did it this way?” he asked as he started to pull my mom’s upper body toward him in a bear hug. My mom managed an eye roll and told him to get the hell off of her while Dana and Chris started laughing hysterically. I have to give Dan credit; he is most likely one of few people to shock a physical therapist. “No, don’t ever do that.” the physical therapist told him. The stunned look on his face didn’t leave throughout the entire wait for transport to come and bring my mom back to her room.
Another night at the hospital and a clear chest x-ray brought us to discharge papers on Thursday afternoon. The moment Dana walked into the hospital room my mom was asking where her sneakers were. Dana managed to stall her long enough to get her prescriptions filled at the hospital pharmacy and have a wheelchair brought around. There were a few tense moments when Dana realized she had lost her car keys somewhere in the hospital and had to have Dan walk my mom to the car at a snail’s pace while she and my Aunt Deb ran wild through the halls until security called to let them know the keys had been turned in.
I am not sure if my mom was worried that the doctors would change their mind and make her go back or if she was just anxious to be on her way home after the long hospital stay. Whatever the reason, my mom kept telling everyone to hurry as they loaded her into Dana’s truck and Dan returned the wheelchair. During the entire “loading” process Dan repeatedly asked my mom if she was okay and she repeatedly told him yes and demanded he get in the truck. After being asked if she was okay for the millionth time my mom started screaming at the top of her voice. My Aunt Deb swung around to see what was wrong while Dan jumped into the truck to assist with whatever the problem may be. A smile played on Dana’s lips as her eyes met my mom’s in the rearview mirror. “That got him moving, didn’t it?” she said and Dana’s smile broke into laughter. It makes me feel good to realize how well we actually know our mom, some children miss the opportunity to really see their mother and know her personality quirks. Dana got the joke before anyone even realized that is was a joke, now that’s love.
The ride home was a bit horrible for all involved. My mom cried out in pain most of the trip and the sound was agonizing for everyone. Her back was causing her horrible pain most likely from not sitting so straight in weeks and soreness from lumbar punctures, I am sure the bumper to bumper traffic leaving the city wasn’t much help either. They made it home safe and sound and then the fun really began—furniture was moved to accommodate a new hospital bed, a wheelchair and a portable toilet. The hospital bed was too hard and an emergency run was made to Target for a foam topper and dog food, we were out! Sheets were washed, pillows were covered, the bed was made, waterproof pads were stored, medicines were separated and liquids were thickened to “nectar consistency.
My sister Kelly purchased food from the Olive Garden to celebrate my mom’s “homecoming.” I guess to most people looking in on the situation it doesn’t seem like much to celebrate but when you are faced with an illness like PML you learn to find the joy where you wouldn’t have bothered to look before.
That first night was rough and left all of us believing we had made the wrong choice, but we managed to get my mom settled and moved on from there. It took atavan and Percocet to get her settled but that’s not really cheating, is it? Situations like this are scary because you learn as you go and they are filled with the unknown. We are not sure how to give my mom what she needs and we do a lot of guessing and she calls us stupid when we guess wrong. It’s almost like charades meets a very harsh episode of the Gong Show. We all just keep waiting for that big hook to come out and pull us off stage.
Meals for my mom are a problem, she has difficulty sitting because of the back pain and we can’t let her recline too much because of the swallow difficulties. On Friday we tried a roast beef sandwich from Arby’s chopped as small as possible, as we fidgeted around trying to get everything in place to help my mom eat she decided she could wait no more and started grabbing roast beef off the plate and tossing it into her mouth. The fear of her choking left us all standing there like idiots yelling “Chew that, chew that!”
We are managing and hoping…
No comments:
Post a Comment