I awoke this morning around 8am, still basking in the afterglow of a wonderful Sunday afternoon in Boston for a Red Sox game. I sat at my computer, had some breakfast and then studied for an exam on Tuesday morning. My wife arose from bed around 10:30, today is a holiday in Massachusetts, and we puttered around for a little bit, laundry, dishes etc.
I decided to do a few things this afternoon.
1: Go to Tax office to pick up some documents to be mailed.
2: Mail documents to Department of Revenue (Tax day, yay)
3: Visit my Uncle in the hospital- recovering from routine hip surgery.
4: Get some lunch
We left the house and went to the office, got the documents and headed to the post office. We arrive at a BUSTLING post office and get in line. While waiting, we figure we will sign the documents and prepare them for mailing. (we should have done this at tax office). Surprise- every damn pen in our local Post Office is DRY! Serously. We leave, go back to the house, grab pen, and sign. We then return to Post and mail the papers. 1 and 2 done, but annoyingly so.
We head to St. Anne’s Hospital to visit my uncle Billy, who had some hip work done the other day. Sadly, he was REALLY out of it due to the exertion of the surgery on a disabled 63 year old, and some sedatives. He smiled his giant smile when he saw me and then kept going in and out of consciousness due to a stressful morning of tests. We hugged and kissed him goodbye and left him to get some sleep. We left a bit bummed that he was so drugged and unlikely to remember our visit.
We head across the street to my favorite restaurant in the area for some lunch. It is closed. Great. We then drive across town to another favorite. They are now closed on Monday and Tuesday. Awesome. We finally go to the local supermarket and buy some food to cook into lunch. More time wasted.
The afternoon arrives and as we settle, the horrible news out of Boston arrives. See my previous post for my feelings, which are angry, sad, and a whole slew of confusion. After a few mind numbing hours of the tragedy, we have some dinner and start playing some video games. Not 10 minutes into gaming my phone rings….
There were complications with my Uncle at the hospital. Shortly after we left, he began to exhibit signs that something was very wrong. They rushed him to the ICU. He was stabilized, but after a few hours began to worsen. They began emergency procedures on him but were unsuccessful. He passed away around 7pm.
When I was a little boy, we had the whole family in one house.
My Grandparents (Paternal)..(I was ‘He-Man’ lol)
My Parents (I was an idiot as a kid)
My brother and I (flanking my pal Nick)
and my Uncle Billy (barefoot after doing some yard work no doubt. he loved it)
Billy was mentally disabled, but extremely high functioning. He loved gardening and yardwork- his profession on weekend with my grandfather. They would grow champion sized Pumpkins in the backyard. (I am the large pumpkin on the left)
I recall a moment, around age 11, when my Grandfather sat us down following the death of my Grandmother. He said (I paraphrase) “Someday I am going to die. I don’t want Billy to be sent to a mental hospital or nursing home.” (his conception of these places were the old school ideas that Mental hospital equals hell on earth). “This is as much his house as it is yours. He never goes in a home. He will be here until he dies” End of story.
My Grandfather died about 2 years later. My father followed him 3 years after that. My mother became custodian of my father’s brother. It was challenging, but we were family, and we made it work. As time went on, my mother’s health began to seriously decline. I, about 22, began to pick up the slack. I cleaned the house and took care of groceries. I took my Uncle out to eat, and to his Dr visits. In 2005, my mom passed away. The burden was now fully on my wife and I.
I kept things together pretty strongly for a while. Then in 2010, the situation deteriorated. My Uncle began to slow down physically. Little was thought of it, as we figured it was just aging. The Dr visits were normal. Then he began to need help getting dressed, bathing, and using stairs. The doctor said it was due to an inactive lifestyle. We began Physical Therapy, another multiple times a week commitment. He showed improvement, but he still needed help with basic necessities. Luckily he could still use the bathroom…until he couldn’t. We attempted to solve this by getting one of those toilet seats that are raised with the handlebars. It worked like a charm. He was hobbled, needed supervised baths, and help with stairs, and needed a walker, but he was still in the house, and was happy. He loved the dogs too!
Then he started to slide, almost imperceptibly. Over the Summer of 2010, he slowly needed more and more help. A neighbor noticed his condition and actually reported us to social services. They did a full investigation and found no fault and actually said that we were taking decent care of him considering his condition. It was around this point that they helped me realize that he needed assistance from outside. They made me realize that he was starting to deteriorate beyond our abilities to care for him. Remembering my promise to my Grandfather, I insisted we do everything we could to keep him home, the only home he’d ever known.
A few months of more Dr visits began in the fall of 2010. We got him on the Meals on Wheel program, and started the process to get him involved in an adult day-care program. One night in December 2010, I came home to find him on the floor crawling to me. He had woken up, fallen down, and been unable to get up. His head was badly cut. I called 9-11, and they took him to the hospital and patched him up. They sent him home the next day. To better monitor him, we moved him onto our floor of the house (he lived downstairs previously). As he sat with us, we realized he had no appetite. This man could eat more than me. By next morning, there was obviously something seriously wrong with him. We returned him to the hospital and they did some exams. They released him again, but this time to a long term rehab facility. He was not in the rehab 15 minutes when they realized that he was still seriously ill. Back to the hospital!
They did a more thorough exam and discovered a sever abdominal obstruction- what turned out to be a 20 pound tumor. Yeah.
After I had calmed my litigious mind, we began to examine options. By this point, a few hours later, he had lost consciousness and was in rough shape. They gave me the choice- ease his suffering and let nature take his course, put him on machines to survive, or treat the infections taking hold and give him a fighting chance to beat it himself. I went with door #3.
At first, it looked like I was only prolonging his pain, until the 3rd day. He woke up, started to normalize and crave food. He beat 85-15 odds stabilized. They then gave me another option: Due to his condition (mentally) do we want to leave the tumor alone and let nature do its work, or shall we operate and run the risk of colostomy bags, and other nastiness that he might not be able to mentally handle. This was a tough one, but I decided that if the man wanted to live THIS badly, I could not take away another shot, they operated. Incredibly, he beat the odds and they removed the entire tumor without the need for colostomy. His lymph nodes were also later cleared. He beat it.
Now some time had passed and his mending was moving along at the rehab, but was facing life in a wheelchair due to deterioration I faced a choice- renovate his downstairs area to be handicapped accessible (covered by his SSI stuff) or look for a group home. I was still REALLY against a group home placing. The old promise kept popping up in my head. I was invited to visit a local group home not too far from the house. It was eye opening. This place had everything he needed: wheelchair access, pulley systems to aid him in enter/leaving bed, and a hundred other conveniences that I could not give him- including 24 hour supervision. He would also be going to a wonderful Adult Day care. The decision made itself.
In Fall 2011, Billy entered the Group Home. He loved it very quickly.
He had pretty nurses helping him, made friends with some of the other residents, some close friends, and enjoyed the day care, which he thought of as “school” immensely. I had broken my promise, and felt like a million bucks because of it.
The next 19 months were awesome for him. He went out every day, had excursions to Baseball games at Fenway, King Richard’s Faire (Medieval faire) and went out to Cape Cod. He was living a more active life that I was. I could never have provided him with that much activity.
He had a nice Hawaiian themed birthday Party 2 weeks ago, and spent a weekend at the Cape. I and the case managers decided that it was time to deal with a persistent hip problem. He went in late last week for the surgery and all was well. He was preparing to go to rehab for a few weeks to recuperate. I actually made a few phone calls this afternoon setting that up. He was that good…until he wasn’t.
I am feeling some guilt at having agreed to the surgery for him, but it was his call. The doctors explained to him what it was all about using skeleton models and he said “ok”. I was still consulted due to his condition, but it seemed the right call to make. The Case manager and the group home staff were devastated to even call and give condolences, I found myself reassuring them. He had complications and was not strong enough to survive the treatment necessary to save his life. It is horrible and sad, but I find a lot of strength in the knowledge that the last year and a half were some of the best of his life. He went out a champ, and that’s not too shabby.