Til I can make it on my own

A year ago Labor Day weekend Mike came home. He came home with hospice care. We had spent most of August in the hospital being told that despite everything there was nothing left they could do to extend or save his life. We got to the point where we couldn’t take it anymore. We literally put a do not disturb sign on the door.

Certain things stand out from that time. The surgeon not being able to put in the stent was one of those things. This surgeon told me to take Mike home, and that he had only 2 weeks- 2months to live. I am sure they told Mike the timeline, but we never discussed it again. I remember him waking up that time, and asking his sister why I was crying. She told him I was sad, and he said I hope you are consoling her. That’s who he was. He was dying, had just come out of anesthesia and was concerned about me. I remember sobbing so hard that night that I was dry heaving into a garbage can.

That same week they were going to try to place another feeding tube. Mike had had so much pain from the interventional radiologists by that time that we had made a complaint against them. He wanted to be fully under anesthesia, and they wanted to just give him some local, and do it. I remember he started crying, and begging me not to let them hurt him again. By then I must have shut down, because I couldn’t even garner my take charge attitude. My sister spoke up that time, and told them he wanted to be put totally under and they finally relented.

I remember his last visit in the hospital bed by his local oncologist Dr. Z. He came and sat down next to Mike. He wasn’t a touchy feely guy, and honestly I never liked him. He told Mike that he knew his will was strong, but his body was exhausted from the fight. Mike didn’t cry, he thanked the dr for everything he had done over the last 3 years, and we never saw or heard from the doctor again.

I remember Mikes brother and nephew coming home with us from the hospital, and how relieved I was to have someone here with me to move the furniture, meet the hospice intake person, and just help me even for a few hours to shoulder this horrendous responsibility.

I remember us going through all the paperwork that night with the hospice lady. I remember her telling me that Mike could go into cardiac arrest at any time, and she wanted to know what he wanted EMS to do if that happened. He was still in denial, and he asked me what I thought. I remember reminding him as gently as I could that having EMS resuscitate him wouldn’t extend the quality of his life, it very may create new agonies of broken ribs, etc I remember he very soberly signed the paperwork telling them not to resuscitate, and I cursed silently to myself that he had to go through this. I never forgot her words though, and I didn’t sleep more than a few minutes at a time for the next two months while I monitored his breathing. He made jokes about how I would reach over in the middle of the night to make sure he was breathing all night long, and I sometimes wake myself up now reaching over to an empty pillow beside me.

It’s been a quiet few weeks around here. I finally gave in, and let my doctor give me some medication that has helped me to sleep. Being able to sleep for the first time in literally years has helped in ways I didn’t expect. Being a single mother, and caregiving I got used to taking care of everyone else, and honestly part of my challenge has been finding out who I am, and what I want as a person. Getting a good nights sleep has helped me to gain some prospective in a lot of areas of my life.

The manic highs and lows of the summer are gone, hopefully for good. In their place is a very flat feeling. I still feel all the feelings, It just feels like I am viewing them from a distance. I appreciate the break.

This grief stuff is hard work.

Anne

4 Comments

  1. Anne, it’s so hard. Thanks for posting, it reminds me that I am not alone grieving for my sister sister, Barrie, who died of the same horrendous disease.
    As you might remember, she was also poked, prodded, re-sected, radiated, “chemo’ed”, treated in Europe and eventually passed away while on Keytruda.

    • I do remember Jeanne. We first got in contact when Mike was new on the keytruda. You are not alone. hugs

  2. Thank you for your courage in sharing this. I know your story has me in tears because I believe it can help not only you thru the grieving process but also others reading it. May each day help you find peace and solace as you continue this journey thru life knowing that you shared a live many only dream of. XOXO

    • Thank you Laura. I try to remind myself every day of the love that we shared. Some days that is easier than other days.

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