How did I become homeless and why me?
I came to Boston after living in Arizona for 7 years and being fed up with the politics there, I also lost my mom who I took care of for a year. My mother should be alive today, but the fates were conspiring against us when she got sick last year and it morphed into pneumonia. She would spend a better part of a year in ICU, and maybe be home for 6 weeks between each bout of illness. It was during her third stay that it became apparent she would not recover, and any recovery would be painfully slow and less than a life she would have wanted. I saw things that have scarred my psyche. It wasn’t just that I had seen my mom have a bowel movement that fucked me up, it was seeing her act crazy and like someone I didn’t know and to have no one to turn to help me. She could talk all crazy like in her alternate reality. One time she tried to even give me her medications, that the people told her she had too. But because she knew her name, where she was, the date and who our President was, the EMT’s couldn’t take her. If they had, they could have gotten a handle on the raging infection that altered her personality so drastically and maybe, just maybe, she would be alive today.
My mom received a double lung transplant October 1, 2008 and had a nice recovery up until late Spring 2010.
In July 2010 I took her into my apartment after she fell and fractured her pelvis in 4 places, when I was unable to pay rent for as my family has always used “tough love” on my mom and her kids, my landlord let me out of my lease without penalty, he saw no need to punish me for what was beyond my control.
At that time my mom didn’t need 24/7 care, but as fall closed in it became glaringly obvious my mom couldn’t nor should she have been living alone. She woke me up one night at around 330am, saying she had to pack for the airport, she didn’t know why, just that she had too. She would be sleepy a lot and forget to take medications or over take them. In October she was throwing up a lot and losing weight fast, likely not absorbing medications vital to her survival. Her doctor was refusing to see her because she owed money as she didn’t qualify for Medicaid to pick up the 20% Medicare didn’t cover, I fired him and got her a new doctor who could work with us on payments. On the second visit to the new doctor my mom was rushed to the hospital with hypoxia and in need of a blood transfusion as her hemoglobin levels were low. Having low hemoglobin levels for my mom meant she had poor oxygen exchange and was why she was tired and out of breath. After a week in the hospital she came home in time for the holiday.
Things really went down quick during Thanksgiving weekend 2010, mom could hardly stand up straight and I asked for help to get her dressed for dinner. My aunt who didn’t see what was going one said she’d be there in 15 minutes as she was busy. (My aunt that last summer had practically threw my mom at me after taking her to the doctor’s, mom was half asleep with spilled coffee all over, I figured the spilled coffee pissed my aunt off). I called her doctor and she suggested the ER, but mom ever feeling the weight of the burden people made her feel like she was refused. But by Saturday her breathing was so bad she relented. I had to convince mom to be intubated for treatment. Two days later I headed to Tucson with my mom, to the hospital and team of doctors who performed her double lung transplant.
There were so many things I witnessed in ICU staying with my mom that are hard to erase. Like when they finally did the tracheotomy there was a space subcutaneously where air leaked and got trapped under her skin blowing her face up and some of her torso like she had an allergic reaction. They had to use a pediatric sized tube for her tracheotomy. Lets not forget that a few days before that they had extubated her as she had appeared to be ready to breath on her own, only to have a panic attack and me having to ban a nurse from her care for not paying attention to my mother’s pain and breathing struggles. (my mom was her only patient and she appeared to be less than caring) My mom was claustrophobic and the Bi-PAP/CPAP masks made it worse.
In ICU a lot of patients are unable to talk so they give you this picture and alphabet chart to communicate, I got good at helping my mom talk to the nurses and doctors, came with knowing her and being there 24/7. Her siblings and mother were an entirely different matter, they lacked the patience and basic knowledge of who my mom was to know her fully and her little nuances. In fact my mom expressed concern of my aunt losing money by staying in Tucson and made the universal motion of that, but my aunt made a motion of playing a violin and said to my mom “Oh, we having a pity party?” I couldn’t believe my ears! I was stunned. The nurse in the room at the time was surprised my aunt taught autistic kids and would behave this way and she just didn’t understand. The family had a plan to make me look incompetent, but sadly they lost on that front. On December 22nd we had a Family meeting with the transplant coordinator, who explained that YMC is taking their time to make sure mom fulling recovers whatever has made her ill and prevent rejection. This information seemed to go in one ear and out the other, they asked if pain medications were the problem and when will she be able to go home and will she be able to go home…. The coordinator explained again about the C02 O2 exchange and that without the doctor’s being in my mother’s presents when these bouts of loopiness occur it would be hard to diagnose or come up with an answer. As soon as we were alone they went on the attack, if only I had had more power and sway they’d been kicked out, they heard nothing that was told, just accused of withholding information. While my mother was in an induced coma there was nothing to say or update. They were given plenty of information, their guilt made them want to hurt me. Because of this a rift was widen between me and them. They had already alienated my brother long ago with intolerance.
I spent 40 days in ICU with my mom until I knew she would be ok to speak on her own behalf.
I tried to work but It was hard to work for 100% commission when your mother needed you and that when she came home it would be 24/7.
She came home February 15, 2011, we bickered, we had fun, we tried. I was left mostly alone in caring for my mom. Mom at that time had qualified for Arizona Long Term Care and I needed some extra training to become her paid caregiver.
I kept asking for a hospital bed so that mom could safely sleep without injuring herself, other members of the family saw it as a way to be “lazy”. Mom fell asleep one night in a sitting position and ended up with edema in both legs, which her transplant team had her going back into the hospital for because it could indicate heart troubles. She stayed for a week and the edema never came back.
March 24 just 13 days after her week stay she again was struggling to breath, It was again an infection that had her intubated and in ICU for a while and in rehab before coming home May 3, 2011. By that time my brother had joined me to care for mom. He was able to do what I couldn’t physically. We of course fought a lot too, like cats and dogs, i.e. teenagers again. We had some good times too.
There are so many little details to talk about and I am not even close to being in Boston at this telling.
I took a picture that may forever be lost since my laptop was stolen of my brother brushing moms hair in a pony tail, not that she had a lot of hair, but the effort was cute. My brother has a 6 year old daughter and frequently did her hair for her.
June 13, 2011 mom awoke again to struggling to breath and coughing up pink. I was put in a tough spot by the state for renewing my own benefits, my being my mother’s caregiver didn’t mean much. You better believe I wrote a complaint up that day when mom was brought to ICU. And someone called with an apology some time later.
After the doctor’s and nurses cajoling and threats basically that on the way to ICU she could die, she relented again, and she said that this was the last time. Within days he Doctors put mom on a Osulator (sp) type of vent that fills the lungs with air to reduce scarring of lung tissue, they had to then do dialysis (two different types). But it was to no avail, mom had plateaued out, not getting worse, not getting better. She was no longer my mom.
We decided to let mom go on June 26, 2011….. We all had our time alone with her. I cut a chunk of hair from her and split it for myself and my brother. After the paralytic they used to put her on the Osulator wore off it was time for a final goodbye. I read the lyrics to Little Wing from Jimi Hendrix (an old boyfriend called her Little Wing) and a Sioux Prayer. The Pastor read The Lords Prayer. And then they withdrew the ventilator…. The minutes and the sounds stay forever in my mind. Of her gasping for breath and moaning. Most of us were crying. I leaned down, and whispered “it’s ok, you can go now. it’s ok, you can go now. it’s ok, you can go now” and seconds later the doctor called the time of death. Crying became more vocal and some screams from other’s. Some people embraced others avoided it. I could have peed my pants from crying so hard I wouldn’t have cared. Her body became cold so quick, skin was yellow, I didn’t want to leave….
When it came to my brother and I, the family didn’t want much to do with us. We had a service for mom the next day or that Tuesday. It was rough and lonely. So many hurts never to be confessed or forgotten.We sold almost everything we could and gave the rest away before we left July 12th for Boston. The family paid for cremation and over paid for our plane tickets with no money for either of us to stay in a hotel, even for a day or so…
I have my mother’s remains and hope to have a service for her at Two Lights State Park in Cape Elizabeth, Maine. Get a proper urn, there is a website where you can get jewellery urns too. And I will do a more accurate obituary in Battle Creek, MI and in North Conway, N.H….You Raise Me Up – Josh Groban
P.S I will get what happened after my brother and I arrived back east in another blog.