Sunday, July 28, 2013

Not where I thought we'd be a year later.

     I can hardly believe it has been more than a year since I've posted anything here. So much has happened in the past year. Some good and some bad. Some very, very bad. I've thought about posting many times but there is just so much to talk about that it was daunting and I put it off. I think I'm ready now. This will be a very long post and very difficult to write. I'm writing it as a release and for John to read someday.
     I will try to write about other events of the year in later posts, but by far the worst thing that happened was that we lost Mary, my mother in law. She was having severe pain in her left arm in early January and I took her to the ER on a Sunday night. They immediately hooked her up to an ekg machine and did all kinds of tests on her heart, given her age and the fact that left arm pain often indicates a heart attack. They also took x-rays of her arm. The tests came back fine and they put her arm in a sling and gave her pain medication and told her to follow up with her regular doctor. The next day I took her to her regular doctor who could not make a diagnosis either and she referred Mary to a physiatrist, which is a doctor that specializes in physical medicine and pain management. While we were at the doctors office, we discussed our concerns about Alzheimer, because Mary was finally ready to admit that there was a problem. Her doctor is a wonderful woman and she took our concerns seriously and suggested we pursue this after we got the issue with her arm pain resolved. We made an appointment with the physiatrist for Thursday.
     The next day (Tuesday), Mary developed a cough and it got progressively worse. By Thursday, we had to cancel the appointment with the physiatrist and she called an ambulance to take her to the hospital that night because Russ was working and John was very sick and she didn't want me to take him out in the cold. I kept calling the hospital to get updates; they initially said that her x-rays didn't show any pneumonia but they wanted to keep her for observation and do further testing on her arm because by this point she was in excruciating pain. It was well into the wee hours of the morning before she was settled into a room. I spoke with her the next morning (Friday) and she sounded tired but felt a bit better after the breathing treatments they gave her. Russ went to work because she insisted that she was fine and would be better by herself to rest. I called Deb (Russ' sister) to let her know what was going on. John had gotten worse and I wasn't able to go to the hospital either. That evening I called to get an update and was told by the nurse that Mary did indeed have pneumonia in both lungs and it was very bad. They mentioned the possibility of intubating her as she was having trouble breathing. I called Russ at work and he headed to the hospital immediately. I called Deb and she said she would come too. She lives 4 hours away and had to go home and pack some essentials and would be on her way. I made the decision to call Russ' brothers, even though they are estranged from Mary and have been for years. Ken took it badly and started to cry. I gave him what information I had and he thanked me for calling him. Deb arrived later that evening and headed to the hospital and then came back to our house to sleep for a bit.
     The next morning (Saturday) John was much worse so I took him to the ER. They determined that he had strep throat and gave him an antibiotic. Russ came downstairs to the ER from Mary's room and I gave him clean clothes because he was planning on staying with Mary as long as needed. Mary was feeling a little better but she was unable to sleep at all. She was on oxygen and she kept trying to remove the mask to talk and she was very agitated. She was very concerned about John and she was convinced that he had caught it from her. Russ called me so I could tell her that he was ok and that he had strep throat which was entirely different and he couldn't have caught it from her. This relaxed her for a little bit but she soon became agitated again and wouldn't rest. Russ and Deb traded off time at the hospital. Russ also brought Don over to see him, which was very hard on Don. He also had a cough himself, so he didn't stay long. Deb's daughter Shanna came up from Virginia and they spent Saturday night at the hospital with Mary so Russ could come home to sleep and spend some time with John. I was the central contact and I got updates and then would pass them along to the rest of the family. Russ' other brother was completely uninterested so I stopped calling to update him. Ken insisted that his daughter Brianna not be told what was going on because she was at college and he didn't want her to be too upset to go to class. Ken came to visit her but it upset her so much that she told Russ not to let him come back.
     The weekend was a roller coaster; Mary would take a turn for the worse and I'd let everyone know and then she'd rebound again and I'd call them back again with better news. I was desperate to get to the hospital to see her, so on Sunday I headed over. Deb and Shanna had spent the night with her and she was doing a bit better. She had been asking for me but also insisted that I not come because John needed me. Her face lit up when I came in the room. Almost immediately, a doctor came in and he said that he had looked over her chart and it looked like she had indeed suffered a heart attack. Mary immediately panicked and her oxygen levels dropped. She got extremely agitated and started having real trouble breathing. I laid into the doctor for saying this in front of her and told him to leave the room. Mary's nurse said it looked as though she was going to need to be intubated. Mary had a dnr and an advanced directive, but Russ and Don had power of attorney and so they had to make a decision if she was unable. He needed to be there so I left so we could switch places. I didn't even have time to speak with Mary, but I told her I'd be back as soon as I could. After a bit, Mary stabilized again and they didn't have to intubate her. Mary did agree to be intubated as long as the doctors felt that she had a chance of being extubated eventually.
     At this point, Mary started to lose touch with reality and retreat into her own world. She was still very agitated and the doctors  were not able to sedate her enough to let her sleep because it would suppress her breathing even further. Her body was starting to break down because she wasn't able to rest. On Monday, the doctors inserted a picc line to make it easier to administer antibiotics. She was doing a bit better after that but still agitated. She was doing so much better that Deb and Shanna decided to head home and return the following weekend. We all believed that Mary had turned the corner. Her mental state was still altered but we chalked it up to sheer exhaustion and lack of sleep.
John was feeling much better by Tuesday and he was still on antibiotics so Mary's doctor said he could come visit because he wasn't contagious and was unlikely to catch anything from Mary. He suggested we put a mask on him just to be safe. We picked up Don and headed over to see her. She was very happy to see John and I but I'm not sure she knew who we were. Don had a hard time with his emotions and Russ and John went to sit with him in the family room while I had a few minutes with Mary. Her eyes were closed and she was having conversations with someone from the past. It was like she was reliving her life and it made me realize how bad she really was. Her doctor came in and Don and Russ came back to speak with her. She told us quite plainly that Mary was in very bad shape and unlikely to recover. She said that Mary had, in a moment of clarity, refused to be intubated. If it was to be done, Russ or Don would have to authorize it against her wishes. The doctor also said it was unlikely that she would recover enough to ever be extubated and she could linger on a respirator, which she always made us promise not to let happen to her. Basically, the doctor told us that there really wasn't much else they could do for her; another set of x-rays had showed that the pneumonia had gotten far worse. Russ asked the doctor if they could make her comfortable and allow it to happen. The doctor said they could give her pain medication and that she would most likely just stop breathing. Don couldn't bear to stay, so we gave him time to say goodbye to her and then I brought John in and he kissed her. She was almost in a childlike state at this point and she waved to him and said "I'll see you later." That was one of the hardest moments of my life. Then Russ took John and Don to the family room and I had a few moments with Mary. Her eyes were still closed and she was talking constantly about things that made sense only to her. I kissed her and I promised that I would take care of everyone for her. John and I took Don home and Russ stayed with Mary. He called Deb and she immediately headed back but she didn't make it in time. Within a few hours, Mary passed away. Russ was with her, holding her hand. He said it was not a gentle passing; she remained agitated until nearly the end. He called me when she passed; we were at Don's. John was watching a movie and Don and I were sitting at the kitchen table. I had to look in the eyes of the man I love like he was my own father and break his heart. Don asked me to call their friends and tell them. It was terrible.
     We are still reeling from the loss of Mary six months later. I will most likely write other posts about the funeral and Russ' siblings. For now, this is all I can handle emotionally on this subject. I have missed this blog and I'm hoping to write more frequently and about happier subjects. John turned five (how is that even possible?) last month and will be starting kindergarten in September! Welcome back little blog, I've missed you.

No comments: