Confusing, Difficult Times...

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In September 2007, the staff at Kaiser rehab was preparing for Michael to leave their facility. I asked the person in charge of his release if there was any possibility of him going to a care facility near us for awhile, as he still had medical issues that I didn't feel equipped to handle at home. We had had a ramp built for access to the front door, and widened the doorway of the main bathroom so a wheelchair could fit through it (although Michael wasn't able to use the bathroom at that point). She told me there was a facility in San Leandro, which was definitely not an option for us - Lindsay and I had been away from home for 3 months, and we ALL needed to be able to get back into our 'regular' lives - San Leandro is 3 hrs away from home... not going to happen. Their procedure before releasing a patient is to have whoever is going to be the caregiver at home spend a weekend in an 'apartment' in the hospital, where they can learn what they need to know, and address any concerns they might have about the patient's care. We never got to do that, because they just came in one day and said, "OK, Michael's being released!!!!"

Michael had an open MRSA wound which was rather difficult to keep clean and take care of - He also was on a feeding tube, which I at least got to watch them deal with at the rehab facility - We ordered a hospital bed to be delivered to our house, packed Michael into the front seat of our car, and made the trek home. The hospital bed was set up in the living room, since we didn't have a bedroom for him. A good friend of his, Tiffany, was here for a couple of days to help out with Michael's care. The feeding tube 'exploded', spewing the liquid everywhere, the medication the hospital had prescribed for him was WAY overdosed, which caused him to hallucinate and have very major issues. After 3 days at home, I called Kaiser and told them he would have to be readmitted to the hospital, because his care was just more than we all could handle - they sent an ambulance, and the ER doctor questioned why we even had him at home! She said he was in way too much medical distress to be outside of a hospital... So he was admitted, and stayed there for a month. He had the same PT and OT as before, which was very comforting, and his medications were adjusted correctly.

Very few visits from anyone at this point.

After a month it was arranged to have Michael moved to a nursing home near our house. I could sleep in my own house at night, and visit him every day. That was about the only part of this phase of his care that was a good thing.

Michael was on some major medications - Fentynal patches, Percocet, just to name a couple... At times he was difficult to wake up in the morning, so he'd miss his PT for that day. The aides would bring in his breakfast and put it on the dresser across the room, and he'd wake up later and just be able to look at it. He was not able to get out of bed, couldn't walk, talked very little, and couldn't maneuver his manual nursing home issued wheelchair. His roommates were, on one side, people who would only be in the room for a brief period, before they passed away. On the other side, was a gentleman who was 'a step above a vegetative state', who got no PT/OT, and very lackluster care. One morning I got a call at 8AM to let me know that Michael had fallen out of bed - at 3AM. I asked if he was at the ER, which was right next door to the nursing home... "No, we put him back in bed"... I threw on clothes and went down there, after telling them to call for an ambulance, I wanted him taken to the ER. The first responders were shocked that he was neatly tucked back into bed, instead of them being called when he was on the floor - so was I. They took him to the ER, and he was 'examined' - and then taken back to the nursing home.

Michael eventually had the feeding tube removed, so was able to eat regular food. It had to be carefully prepared, and there were certain things he couldn't (and still can't) eat, like peas and corn. Due to the tracheotomy he'd had done immediately after the accident, small bits of food could get stuck in the 'flap' inside his throat. The food that he was served was horrendous - not appetizing to look at, and certainly not a balanced diet. One of the meals that really struck me as disgusting was the 'Frankfurter Boat' - a mound of mashed potatoes, with a hot dog on top of it, and grated cheese on top. I can't imagine who thought that one up. So I'd go down and visit with Michael during the day, and then go home to prepare dinner and make some extra to bring down to Michael and put some meals in the freezer for him.

Michael was pretty much confined to his room, unless someone pushed his wheelchair outside for him. The atmosphere at the nursing home was very depressing, him being a 27 yr old in the midst of the elderly and infirm, who had 'maintenence' needs, more than needing therapies to try and improve their condition. Some amazing friends organized some fundraisers for Michael - some local, and some that involved people from around the world. Through these fundraisers, we were able to purchase a used wheelchair van for him, and also a used power wheelchair - I clearly remember the day we brought the wheelchair to him and got him into it. He was in his room, and we asked if he wanted to wheel around in the hallways... He was very hesitant, and just kind of maneuvered it back and forth for a bit. I opened his door, and he wheeled through it, out into the hallway, and was off!! Michael had always been a very good driver, very cautious and careful - and he maneuvered that wheelchair around like he'd been driving it for years!!! Thankfully, Lindsay got some video of his maiden voyage, with some of the staff encouraging him on, him going outside through one door and coming in through another... and talking to the other residents, who the staff had parked in the hallway to make it easier to care for them. With the chair and the van, our routine changed a bit. I'd pick Michael up after he had breakfast in the morning, and bring him home for the day - he'd have lunch, we'd take a 'stroll' around the block, he'd have dinner, and then later on I'd bring him back to the nursing home. That was always a bit of a struggle, him begging to be able to stay with us - we didn't even have a fullsized couch at that point, just a loveseat, and I'd show him that even I wouldn't be able to sleep on it, he definitely wouldn't be able to!! It was so difficult to have to load him back into the van, drive him back to the nursing home, and then make the trip back home without him. A local builders organization was supposed to be working on adding a bedroom and bath to our house, as a 'community' kind of thing, since we had no money to put towards it. We had been working with them to try and get our home ready for him. I spent many nights in the parking lot of that nursing home, in tears...

Part of the issue Michael had in the nursing home was that he was the same age as most of the aides. Some he knew from high school, some he'd hung out with before the accident. It seemed they never fully got the fact that he wasn't there to 'hang out' with them, he was a paying resident. For whatever reason, there came a day that there was no question but that Michael's time there was over.

About 18 months after he moved to the nursing home, I went down to get him one morning and he wasn't in his room... Not totally strange, because he'd roam around the facility in his power chair, schmoozing with the nurses and the elderly residents in the hallways. I walked around asking if anyone had seen him, or knew where he was, and no one did... As the panic set in, one nurse said she thought she saw him going into the front office. So I went and tried to open the door, but it was locked... So I started pounding on it, and the office manager opened it and told me that Michael was telling her about something that had happened that morning. I went into the room and she locked the door behind me. Apparently it was Michael's shower day. Two male aides went into his room, took off his clothes, covered him with a towel, and took him into the shower room. They positioned him where he needed to be, turned on the water, and soaked him with ice cold water. When he complained, they said, "OK, we'll make it hotter" and then doused him with very hot water. When he asked for a towel, they tossed one at him, and it landed on his head - which is when they, laughing hysterically, called him a 'towel head' (Michael's father's family is from the Middle East - yeah, this was kind of unacceptable!!). They put his clothes on him, while he was still soaking wet, and wheeled him back to his room. Thankfully, a caring employee with Housekeeping came in and saw that Michael was in distress, and reported it to her supervisor, who reported it to the front office.

So I'm standing in this office, fuming, and I asked the manager where these two people were, right then. She said they'd been let go for the day, while the incident was under investigation - I contacted the police department and in the days that followed two attorneys, myself. I took Michael out to the van, and informed them that he'd be at our house, except for sleeping at the facility, until I knew that these two people were no longer employed there...