The last 6 weeks have been a whirlwind. I think Memorial Day weekend and the entire month of June have forever been changed for me. It all started Sunday, May 26th. We were at an event at a local fire station for children with special needs that afternoon. It was brutally hot outside and we were watching the firemen (and women) show us the firetrucks and equipment. I got a call from my mother (or so I thought) but we were outside in the heat, sweating, and I decided to call her back later. When we left I called her without checking the voicemail that I later found and she didn't answer the phone. Instead the daughter of the person (Toni) who cleans her apartment answered the phone. She said when they arrived they found my mother on the floor unresponsive and they had taken her by ambulance to the closest hospital. She had fallen and hit her head and they thought she'd had seizures and possibly a stroke. My mind raced and we went home to call the hospital to confirm she was there before we went down there. When we got there she was still in the emergency room, they hadn't given her a room yet. She was having trouble clearing her airway so they intubated her and they were going to sedate her because she was having seizures and they wanted to sedate her until they got the seizures under control. There wasn't an official waiting room for the emergency room and not enough room for people to be in her area and Joshua wasn't allowed in. We waited in a little hallway for hours for them to get her a CT scan. When they finally did they didn't have the results right away and it was late so we left to get something to eat. They were supposed to call us when they had any news. We called and they didn't have any news so we went home. They didn't get her into a room in the ICU until the middle of the night. When we got home we called my brother Tony, her friend Robin, and the person who found her to update them on the situation. My brother flew down the next night and Robin drove down for the day the next day.
When we got up there the next morning which was Memorial Day (after we dropped Joshua off at the ABA therapy clinic for the day thank goodness for that) we met the nurse and nothing had really changed, we waited on the doctors to get there after making their rounds. They said they were still running tests to find out what had happened as they didn't know yet. The tests they did didn't come up with anything. They changed her medication to try to control the seizures better. Tony arrived that night and stayed at a hotel close by. We found out the next day that she had indeed had several strokes. We don't know what happened first, the fall, strokes, or seizures.
The next several days they tried to control the seizures and wouldn't wean her off the sedation until they had the seizures under control and then they would take out the breathing tube. They said seizures can last 3-5 days after a stroke and it was the full 5 days before the seizures were under control. Then they weaned her off the sedation and removed the breathing tube. We all waited on pins and needles to see what her reaction would be once she was breathing on her own and not sedated. They told us the areas of the brain that were affected by the stroke included areas related to language, speech, hearing, and vision. We didn't know how these would be affected. Almost immediately we found out that she could see and hear and she was able to speak and understand us. The next few days she made amazing gains; she was able to answer questions, move all of her limbs, and she kept moving forward. She had PT, OT, and speech visit her and get her moving. She actually took some steps, worked on getting dressed, and personal hygiene. She was moved to the 10th floor which is the neurological floor. She had a feeding tube in her nose which bothered her a lot and the goal was to get it removed. So they did a swallow test and started her on liquids. She had to stay on the same consistency of liquids for a certain amount of days before they would do a new test. We were all waiting for that test to happen. At this point she had been in the hospital about 2 weeks.
Unfortunately, the new test never happened. In the middle of the night she developed a high fever and stopped being as responsive as she had been previously. We don't know if it was because of the fever but that is what we suspect and it took a while to get it under control but for the next several days they tried to get her to respond the way she had been and she was unable to. She was still breathing on her own but she couldn't answer questions, follow commands, or make purposeful movements. The doctors called it post-stroke dementia. The week before when we had brought Joshua up to see her she was so happy to see him and telling him she loved him. Now when we brought him one time she smiled at him, after that she didn't respond to him or us. Whenever she did make any kind of noise it was like grunts or cries. The doctors told us this was her new baseline. We were all devastated. Just a week ago she had been doing so well and making gains. We had gone to look at rehab facility for her and put in an application. This still makes me sad every time I think about it. I couldn't believe this was happening and we had no answers as to why. Everything pointed to the high fevers but they couldn't be sure. They did all kinds of tests and found nothing, no infection or anything that could they could say was the cause. We had no answers as to why she had this decline and the doctors couldn't see her coming out of it. It was awful watching her suffer without a way to communicate. We tried to communicate with her but she couldn't respond. She was trapped in her body and could only make noises but not in a communicative way. She couldn't respond to commands in any way. It was miserable for her and for us to watch her suffer this way.
We had an impossible decision to make. After watching her and not seeing any changes over several days we decided it wouldn't be fair to let her continue to suffer in this way. We knew this was not what she would have wanted. Unfortunately, she did not have a living will which would have told us her wishes but she had expressed them in the past and we knew she would not choose to continue on this way. The doctors told us they would do all they could to keep her comfortable and we decided on hospice comfort care. It was the most difficult decision I've ever had to make. It was not a position I wanted to be in, I don't think anyone does. It was very difficult for me to be there watching her when she was in this state. It was difficult before when she was communicating because she would cry and say how she was tired and sometimes tell us how she felt and that would break my heart. This was harder because she couldn't communicate. At least then I could hold her hand and talk to her, tell her I loved her and I was there and she heard me. Now I didn't know what she heard or understood and I couldn't soothe her.
I have to give all the credit to Tony for this entire ordeal, he was absolutely amazing. I couldn't be there the entire time because I had Joshua to take care of. Tony was there, almost all the time. He was the one communicating with the doctors and telling us everything that was going on. One weekend (before she came out of sedation and had the breathing tube removed) he was there, her brother and sister-in-law, and Robin and her husband Steve were there. Her friend Carolyn and her daughter came to visit for one day as well. Her friend Toni and her daughter came weekly to visit I had wonderful support during this time. I had friends and family messaging me to ask how I was doing but Tony was the one keeping them updated on the situation. I really don't think I could have gotten through this situation without him. I wouldn't have been able to be there as much as he was and I wouldn't have had the support from him as well. Everyone was respectful of the decisions that I had make.
As time went on they did their best to get her more comfortable. They were able to get her to stop crying out as much and eventually she became peaceful. During the entire time she was in the hospital up until this point she had not been resting very much. Even when she was sedated she wasn't getting restful sleep. Once she was out of the sedation she wasn't sleeping for very long because they had to keep coming into her room to check on her. Now, she was finally getting rest. She had been fighting so much during this most recent period where would have quiet moments but not very many and she didn't really seem to sleep although she was not very awake, it's hard to know exactly where she was because she couldn't communicate. Now, she was resting and peaceful. We knew she needed the rest but we also knew the reason was the pain medication they were giving her to make her comfortable. Now was the hardest part. I knew what was coming and I didn't know what to do. I didn't know how to tell her I was sorry, I didn't know how to say goodbye. How do you do that? I couldn't and I told her this through tears. I tried to get some things out to her but I couldn't manage to find the words. I told her how many people loved her and that we wanted her to be at peace. But mostly that I was sorry that this had happened.
We spent the next several days with her as much as we could be. Tony slept at the hospital at night so she wouldn't be alone and she was never left alone. Robin and Steve came down Friday night and stayed so we could take turns ensuring someone would be with her all the time. We were all there with her on Sunday afternoon. We were actually playing cards. We were watching her breathing because it had started to slow down. We were discussing what we were going to do about dinner. Jamie was coming down with Joshua to meet us somewhere for dinner. Then it happened. It kind of caught us off guard. She was taking longer pauses between breaths and then just stopped. The next few moments kind of went by in a blur. Talking to nurses and coming to the realization that she was gone.
I have never been through anything like this before. When my father passed I wasn't there. Nor any other family members. Also, this was different. This was my mother and the family member I had been closest to my entire life. She moved to Columbia to be closer to me and to Joshua. The first preschool he attended was just a couple of miles from her apartment and he started right after she moved in. I was with her 2-3 times a week while he was at preschool for 3 hours in the morning, I was at her apartment. We would eat an early lunch and then I would go pick him up. This was for 3 years until he started preschool in the public school system. This was a private preschool for children with and without disabilities. After that we saw each other a little less frequently but still got together. She went to the zoo with us, to parks, we had lots of lunches and dinners out together. She spent holidays with us. She stayed overnight at our house occasionally like when she would watch him for us so we could go out and for holidays. She went to all of Joshua's birthday parties, my baby shower, hosted a bridal shower for me, and of course she was there for my wedding. So, devastated doesn't begin to cover how I felt.
I think I had been going through the motions for most of the time she had been in the hospital, I think somewhat I am still going through the motions. I have allowed myself to cry and feel but I still have to keep going. I really hadn't stopped thinking about the situation since it had begun. I still think about all aspects of it all the time. I'm still coming the realization that there will be no more holidays together, no more meals out, no more trips anywhere. I think as each milestone passes (as I have heard happens with other people who have been through this) those emotions will be there. Joshua will have a birthday party and she won't be there. Then there will be holidays and birthdays. I daily think about the fact that I can't talk to her on the phone anymore.
I wanted to write all of this in part for me to get it all written down, to put it all on "paper", and in part if I ever share it with anyone so they can know more about the situation and what happened. We had so many people who were there for us and who wanted to know what had happened and I think they deserve to know if they want to. I think over the coming weeks and months I may share more. So far I haven't really shared on Facebook. I guess I didn't really know how to start. It was a little too much to put in a Facebook post. So I started writing this as a way to remember what happened and also a way to express my feelings. I have been thinking about it non-stop for weeks and I needed to get it out of my head. It's a little bit therapeutic for me. We had a beautiful service for her here and lots of friends came. Anytime anyone tried to talk to me or hug me I cried. I wrote a eulogy that I never though I'd be able to read but somehow I got through it. We have a recording of it which I will share as well as a slideshow of photos. Here is the recording, I wasn't able to get it to play on my computer only on my phone Audio Recording of Service. Here is the slideshow and obituary Tribute Page. There you can post notes as well. So that's it for now. If you've made it this far, thank you. Thank you to all who were there to support me and my family during this time.
Below is the eulogy I wrote & delivered at the service.
Sitting in the hospital alone with her when I was able to get the words out through tears I told her I don't know how to do this, I don't know how to say goodbye. I tried to tell her and I hope she knew that I loved her and appreciated her but I don't think words are enough. The past few days have been busy and have seemed surreal; trying to get through each day and each task to get to today. The hardest part has been knowing that I can't pick up the phone and call her anymore. I could call her anytime and we talked about everything. She was one of my closest friends and confidants. I hope that I was the same for her. She loved her friends and family especially her grandson, my son, Joshua. I am grateful for the wonderful memories I have of them together. Every time she said goodbye to him she told him she loved him from the top of his head to the bottom of his toes and she would kiss and try to hug him, he's not big on hugs. He loved it. He loved it when she read to him. I could always count on her to help me whenever I needed help but especially with him. I couldn't have made it through our most recent move without her. I hope she knew that no matter what was going on in my life that I was there for her anytime she needed me the same that she was there for me whenever I needed her. I know that she was there for a lot of people in this room and many people who are not here. She was a friend and confidant to many. She was definitely a people person, much more than myself. I could always count on her to make friends wherever she went, whether I wanted her to or not. She did her best to encourage me to make friends She led a brownie girl scout troop when I was young to help me make friends. She would organize play dates for me. She would let friends tag along on our vacations so I would have someone to play with while she would sit on the beach and read all day long under an umbrella; I would always know where she was. I have many fond memories of trips we took together over the years. Getting lost in Washington, D.C. before GPS when we would see our hotel from the interstate after we passed it and found a cop in neighborhood where he wouldn't get out of his car to give us directions (if that gives you any idea of the kind of neighborhood it was). Going to St. Maarten with her when she had a broken leg. She was an advocate for me which has helped me to be an advocate for my son. She taught me resilience, compassion, and so many other things over the years. She was many things to many people over the years and I hope she knew that and how many people loved her. I don't think I can say thank you enough to her for all she did for me and many others. I also want to thank many people who are here today and some who aren't who have helped me and her this past month; I don't know how we would have done this without them.
