Before you read please know that this is not for anyone but myself. Writing like this helps me deal with things that I cannot speak out loud. It is also a long post. As I sat at work today and heard on the radio people discussing their New Years plans I couldn’t help but reflect on my own year. Yes, this year was painful, and by painful I mean devastating to the point it shook my core. I have always been a strong person and one of the reasons my mom counted on me as a caregiver was because of my strength and understanding of medical terminology. I am one that remains calm in the face of danger, stress or anything else you can think of that might cause people to freak out. I was once told by a manager that it was a good trait to have, I guess in some ways it is. It helped me excel in business and in helping my mother during some of the darkest times of her journey. No matter what the doctors always told us I told her to not worry God has this and things will be ok. I would ask her how she felt about everything, and I mean everything. We often discussed death, but also life and what it would be like when she got the transplant and how our lives would forever be changed. How I would have to help her for several months and I might only to be able to work part time because she would have to eat and live a certain way after surgery. Most children might not look forward to a time when they would have to care for their parents as you would a child, but I wanted to. She had always sacrificed so much for my sister and I growing up as a single mom that I never gave it a second thought. I thought it was just something everyone did. The more I did the more people commented on what I was doing, working my schedule around doctor appointments, cooking extra food and bringing it to her, going to the store, spending my weekends just sitting watching old movies with her. I didn’t know this wasn’t the norm and this was, in the eyes of others as some special thing I was doing. I’m sure by now your thinking what does this have to do with 2014? Well this was the year that it all went sideways. It started out great after mom having a short hospital stay and rehab in the nursing home she finally came home after New Year’s Day (We spent her birthday, Christmas and New Years at the nursing home). Feeling good with her back and wrist now rehabbed and ready for use. My step dad put the tree up and she enjoyed it for a week before he took it down in mid January. She even asked me to make my visits on the weekend to one day instead of both, insisting I spend Saturdays with my husband. So as a good daughter would I did exactly what she asked. I would bring her food, my friends would make her food and things were looking positive. I even talked to her the night before it all started…...she insisted on me making her a hair appointment since she hadn’t had it done in months. She was feeling blah and wanted to feel better, so I set her an appointment. Later that night I got a call from my step dad that she was admitted to the hospital for an infection. When I finally went up there she wouldn’t eat, she was sad she was in the hospital and was having trouble walking again. It seemed in just a matter of weeks it all was changing again, but they said this is normal for liver patients and that things would change. I took her flowers on Sunday February 9th and she asked me to stay and hold her hand. We were waiting to talk to the doctor about moving her back into rehab at the nursing home down the street. After 6 hours that day she asked me to go home, she didn’t want me there anymore. I had tried to get her to eat but she was sad that she was back in the hospital again. She kept telling me how tired she was and she couldn’t sleep when I was there since I was too noisy. Now I know this wasn’t the case since I sat in silence at her bed side and had my phone on silent. I knew she just wanted to be alone. The next day I received a call because they thought I wasn’t supporting my mom as she needed during her difficult times in the hospital. I never shared this about how they told me I was a bad person because I wasn’t there to support my mom this time. I was devastated, I had been up there and she kept asking me to leave. My biggest thing was to make sure I never upset my mom regardless of my feelings, her feelings and well being always came first. If I was stressing her out why would I sit and make her more stressed?? They also told me I was not a good support for her since I couldn’t attend the meeting with the social worker the next day about her status on the transplant list due to her being so weak. I couldn’t request off from work and they said because I was one of her caregivers that it would count against her. I cried that day and the next waiting to hear what the verdict was on whether she stayed active or went inactive on the list. The day before finding out her status on the list she had been moved to the nursing home for rehab. Tuesday we were told during the meeting with the social worker that due to her weakness and inability to cooperate she would be listed as inactive for liver transplant status until a time they deemed her “strong” again. I wanted to see her and go to the nursing home that day, but they wanted her to settle in and she really didn’t want me there, she wanted my step dad, so my plan was to stay away until Thursday. Thursday was the day. I was going to go in for my pep talk with her, she had two days to adjust again and I was ready to have her come home quick, like the next week. Even if I had to stay the night up there helping her walk and get stronger. The call I got at 11 am on Thursday February 13th changed everything, and my life going forward. When I rushed into the nursing home I could hear my mother crying out “I want to go home” when I came in the front door, when I got to her room I could see that she wasn’t herself. I talked to my step dad and her nurse and even the manager of the nursing home about how I knew she wasn’t well and there was a problem. I asked for blood work and vitals which they couldn’t provide. The details between when I got there and the time the ambulance arrived are all irrelevant but that hour was the longest hour of my life. We were back at the hospital ER before 1 pm waiting for them to make her stable so we could go back to get briefed by the doctors. Finally after 30 minutes we were taken back, everything, and I mean everything seemed different from the countless times we had been in the ER & the hospital before that day. The only words my mother had been able to speak for the last 24 hours were “I want to go home”. We got a brief “ok” a few times during her more clear moments, but everything was answered with I want to go home. I could see in her eyes like she was pleading with me to help her, it was the most painful time I have ever had in my life. Watching and knowing she needed to say something but she couldn’t make it happen. I guess due to the infection and her liver failing along with other problems with vital organs she really lost her ability to speak, there was a lot of confusion that went along with all this as well. We did get a few words once she was in the ICU. These were answered in Italian when they asked her a few questions, which made me laugh and I told her she had to speak in English, but in English she could only say I want to go home. That night as I was trying to calm her stroking her face, holding her hand and talking with her, I asked what do you mean you want to go home? Her tear filled eyes told me what I already knew, this time was different and she knew it too, she wanted to go home, her heavenly home. I cried because in that moment what I felt had become real. The only other words my mother said to me before she could no longer speak that night were “where is my daughter”? I knew she was asking for me because she told me everything that she wanted to be done and what I would need to do when it came to the serious time, this was the serious time. I told her I was there and grabbed her hand and got close to her face and told her that I would take care of everything, the last words I said to her were that I would take care of it all and I knew what she wanted, the last words from her to me were OK. The next 11 days are the most painful, filled with false hopes, horrible failures and taking my mother off of the ventilator that was suppose to help her breathe, but was ultimately causing her immense pain, along with organ failure. On the 11th day she did it her way, I had been with her since we signed the papers and they took her off the vent, I had called family, friends, our pastor, all who came to say goodbye, say a prayer, give us a laugh. The next day I fought with hospital doctors, nurses and various people from the transplant clinic on hospice and moving her from ICU. I think I slept 30 minutes that day, before it all started again. Because they knew she wouldn’t last they wanted her moved, and because she hadn’t passed I didn’t want her moved and no matter what they couldn’t make me agree to it. I did just as my mother knew I would be that woman that demanded what I wanted and refused to waiver, I like to think this is why she wanted me to be that person she knew she could count on for this reason. When things were hard, chaotic & people are leading with their emotions I would always do what she wanted regardless of how I felt, thinking logicially and I did, exactly as she wanted. She passed on that 11th day after I had left because her stats were strong and it would be sometimes Tuesday when she would decline and ultimately pass, I left thinking they were right, she had been steady all day so why would I think she had one trick left? She did have one trick left, this one was to save me from being there when she left her earthly body, waiting, on her terms until she was alone with the nurse. I got the call after I had been asleep for 10 minutes, she had passed around 1140 pm. I immediately got off the phone and screamed into a pillow, then like nothing I got my shoes on and headed to the hospital. I was the one that called my family and let them know the next morning, why would everyone have to get up at midnight, it’s not like anything would happen. So the rest after this is a blur and life went on, in some weird and chaotic way. During this journey of 2014 that started out with a little hope in January, to complete devastation in February, sadness for March, renewal of life in April, sadness and laughs for Mother’s Day in May, sadness for June, sadness of the loss of my father in law in July, sadness in August, well you get the picture at this point. This year has been the most sad even though there were glimmers of sunshine through the clouds. My faith in God has never changed, in fact in some ways it has gotten stronger. Knowing that I could never, never have gotten through this year without my faith, my friends, my spouse and my family. It makes me think in some ways my mom must have seen something in me that I really never did. I still feel weak, I still feel sad, I hear her voice and laugh in my own now and that is comforting and sad at the same time. My resolution for 2015 is simple, I want to be better than what I was in 2014. I want to be a better Christian, I want to be a better wife, I want to be a better friend, I want to have faith that shakes mountains into rocks, I want to look at 2014 and say that was the year I was really tested by life and I KICKED ITS BUTT! Tonight there are no parties, no drinks, no gatherings. It’s a quiet night at home remembering that we somehow made it through one of the most emotionally devastating year, it seems 2014 just didn’t give up trying to destroy us, yet we survived. Tonight we will have a regular night and go to bed like normal waking up tomorrow thinking the same thing, this year will be a great year, 2015 will be our year. This time when my husband and I say this I know that in our hearts that we both want to believe it and make it true. Happy New Year my lovelies, be safe tonight
Posted on: Wed, 31 Dec 2014 23:15:33 +0000
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