What Normal

Mentioned in my prior post, Joe departed life on 10/03/2016. He gained his wings at 3:33 AM. We had gotten him transported to Kaplan House through his hospice service on 10/01/2016. On 10/02/2016, about 12 hours before he passed, he told us he wanted to sleep and be done with it. Thankfully, he was able to see each of his brothers, his parents, and me prior to his passing. I was holding his hand when he passed, and they had managed to control his pain so he could sleep, so he went peacefully.

It has taken me so long to post about it due to the emotional roller coaster grief causes. I was initially very numb. I went away from home for a week to try and figure out my mind and start to figure out what would be next for my life as a widow at 31. It was during that time away that I was able to sing and post that small melody. It worked well, and I was antsy to return home a day earlier than planned, not sure how I would handle it, but ready to try. I knew that due to circumstances beyond my control, I was going home to my supportive job, but not much other support in the immediate area.

I was able to pick up his urn on Sunday. That brought some comfort to me. I also write letters/journal to him every night. This is helping me keep my mind more clear, so that issues, accomplishments, miseries, ideas, etc make it on to paper and out of my head so that I am usually able to sleep. My problem currently seems to be lack of motivation at home, anxiety when it is time to leave work and go home, and difficulty waking up in the morning. I keep reminding myself how little time has passed. Every day presents new challenges. Every day I ride the roller coaster of emotion and never know what will set off tears.

Recently have been told:

Things don’t get better; they get different.

This is true as I seek a new normal. My normal will not be normal for some time to come, but it is what I search for.

 

The Last Few Months

The weakness that was Joe’s biggest complaint was, I think, what finally overrode his drive to fight. He very seriously planned on fighting his cancer to the bitter end years down the road. He has always been driven to work, to provide, to not be stuck in the house as much as possible. There have been so many times in our time together where various illnesses did make him housebound for a short while, but he was always right back at life.

The weakness he experienced sapped his will, sapped his strength. He would apologize multiple times per day for being sick. A very large part of my caregiving was a constant reassurance that he was not a burden, that I loved him. I continuously tried to bolster his mental status, but was watching him slip away a little more every day.

He had about 4 hospital inpatient stays within 2 months. Each time he went in, all he wanted to do was gain strength and get home. Two infections resulting from his PICC lines, 1 bout of going septic, IV antibiotics, need for the steroid that was finally determined as the cause of the weakness otherwise he would have unrelenting nausea and vomiting, all contributed to his end.

The last time he came home, he came home on hospice care. It was one of the first times I felt relief, felt confident in the medical support we could receive outside of the hospital. He was on hospice for just over a week before going in to the hospice house. In that time it was a long period of ups and downs trying to balance his oral steroid intake so he would feel okay but not feel too weak. By the end, he was just too weak for too long and no longer had will to fight.

We all had hoped that some time on hospice would give his body time to recover outside of the hospital and that he might be able to pursue immunotherapy later on. Unfortunately, this did not happen.

Grieving

Many things started surfacing after he passed that his family did not know, that I did not know, that all of us have had a difficult time processing and understanding. All I did know, do know, and cling to, is that I loved him. I realize he kept me in the dark about many aspects of our finances, as he took care of the bills, and I trusted him implicitly. I find that I am not angry. I am more resigned. I wish he had shown me the trust he told me he had in me and let me know what he was doing fully so I would not be so blindsided. I think that many believe I knew what we are all discovering and find it difficult to understand that I did not know.

No matter how it is spun, he was my husband. My grief process is my own, and part of it is just figuring out where I stand. I am trying not to tumble headlong down a hole with no way out. I am striving very hard to wade out to deeper waters with a life line attached to me very slowly so that when I find my way to the end of this rabbit hole I can pull myself back.

I have found that being outside helps immensely. Fresh air and nature call to me. Writing is starting to happen again. For a while, my well felt rather dry. I have actually pulled back from a large part of social media reaching out in brief spurts for support, realizing that most of this I will have to do on my own.

Every day presents new challenges as I never know quite how I am going to feel. I find it hard to get out of bed in the morning. Once I am going, I am usually okay with moments that make me pause, sometimes cry. Leaving work at the end of the day fills me with trepidation. I am very slowly addressing the clutter in my home. I try to manage one small thing every night and hope that trend continues. Like, before I started this post, I had emptied out a small closet, sorted what was in it as keep and donate and trash. It was small, but it was progress.

 

I understand that this is going to be a very long road ahead of me. Day by day and hour by hour I will find a new, different normal.

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