Today's post isn't fun to write & I'm sure it won't be fun to read, but it's something I HAVE to share and I hope you will act on. For those that don't know, my mother-in-law was diagnosed with pancreatic cancer at the beginning of June and then developed pneumonia in both lungs (from aspirating at home & during a procedure to replace a stent in her liver), so she was hospitalized. Last Thursday, she took her last breathe. I've run the gauntlet of emotions during the last month, but the primary one has been anger. Anger at my mother-in-law, at my husband, at my father-in-law, and at myself.
About two years ago, we had discussed final wishes with my in-laws in a vague way. They both set up life insurance policies, they asked if they could put me down on their living wills as medical power of attorney (so their sons would never have to make those hard decisions), and said they were buying their plots. Because they were living on a fixed income, we had said if they ever had trouble with their life insurance premiums to let us know & we would cover it that month. They didn't let us know (maybe they were embarrassed or just thought they had plenty of time to start a new policy) and we found out after she was diagnosed. We also found out then that they never notarized their living wills, so they weren't valid, and that their plots were not purchased. Trust me, this is NOT the time your family wants to find out that you have nothing in writing and nothing set up to provide for your final expenses.
My FIL made it clear to the hospital staff that he can't hear them (very hard of hearing) and doesn't understand most of the terms, so they set it up that all major decisions needed my FIL, my husband, and myself to agree. For “little” things, like authorizing them to put in a PICC line & put her on a ventilator, they contacted me. Because she hadn't signed her living will, there was no DNR in place.
The second time they put her on the ventilator, her heart stopped. After 8 minutes of CPR, they were able to get her back. However, she was completely non-responsive, even to pain. Over the course of the weekend, she started responding to pain. Then, she started waking up for short periods of time. She was off all sedation meds, but didn't know who we were. She would panic a bit when people were touching her hands, stroking her hair, etc & she had no clue who they were, to the point her blood pressure was rising up to dangerous levels, so visitors had to be restricted to 2 at a time & everyone was asked not to “overstimulate” her.
For the course of a few weeks, I was at the hospital for 5-10 hours every day. We were able to get a DNR put on, based on what she had verbalized to us (“If I can't feed myself, can't talk, and can't hold my grandbabies, I don't want to be here anymore.”) but her primary care physician removed it once against our wishes. After that, we were all a little paranoid & checking to make sure that purple band was on her wrist at all time. We couldn't change what had happened, but we could try to follow her wishes as best as possible from here on out.
There were many ups and downs. She started to recognize people. At first it seemed like it was just from the nurses saying who everyone was over and over. They were able to get her back off the ventilator again and then off of oxygen completely. She was able to talk, but didn't make a lot of sense. We knew there was some brain damage (after 3 minutes without oxygen, the brain starts dying), but they didn't want to speculate on how much was from pain meds, how much was temporary, and how much she would recover. For almost 2 weeks, a woman I've known and loved for almost half my life had no clue who I was. Then, she said “Your father-in-law is….” to me one day. She had come back enough to recognize me & be annoyed by him smothering her; not that I blame him at all!
Unfortunately, 3 days later, she was no longer waking up for more than 15 minutes at a time & the morphine wasn't enough to keep the pain under control. She tried yanking out her ng tube (runs from the nose to the stomach & was being used to keep her from aspirating stomach acid), was unable to eat anything, and kept declining. On Tuesday, I met with her oncologist & we decided to move her to hospice, so they could focus on managing her pain. They removed her PICC line (and used a chest port for pain meds), stopped her breathing treatments, stopped all antibiotics, and removed the ng tube. Everything we did was to make her as comfortable as possible. Wednesday at 2pm, she was transferred to a nearby hospice house. My FIL and I went with & spent some time personalizing her room with flowers and photos from home, in case she woke up enough to see them.
Thursday at 3pm, I received a call from hospice letting me know she had just passed away. They had been watching for the warning signs, but it happened too quickly to let me know. Since we had increased her morphine drip so much, she hadn't been in any pain for the last 2 days of her life & her passing was peaceful.
Everything to this point had been stressful, but was nothing compared to what was coming. I had to tell our children by myself. My husband had gone back to work out of state Sunday. To make matters worse, Thursday was my Autistic son's 8th birthday. Our other boys had been handling each stage very well, but Connor was a grandma's boy & death isn't something he was really understanding.
After explaining to the boys, I left them with my youngest sister & went to tell my FIL before he headed back over for his afternoon visit with her. When I got there, his face lit up (I think he thought I was just coming to hang out for a bit, like I had on other days) and then I told him. I can't remember what I said, but I still can't think of a good way to explain to someone that their wife of 41 years just passed away. After he processed it, we left to go see her body & start making arrangements.
From the time we left hospice that evening until her funeral (only 2 days later, according to her faith) is a bit of a blur. I had to authorize hospice to release her body to a funeral home. My parents took the boys home for the night. A dear friend & my sister brought wine and helped me write her obituary. My husband drove home that night & the next morning, we met with the funeral director. Friday was spent getting a plot purchased, flowers arranged, notifying everyone, deciding on details for her service, comforting my FIL, comforting the children, debating whether the boys should go to her service, and collecting her personal items from hospice.
I didn't cry during any of this. We were too busy making arrangements to even begin to grieve. It wasn't until I was driving to the cemetery that I finally had a chance to process, which also made me angry. Anger is still the primary emotion I'm feeling. I'm mad at my in-laws for not arranging anything beforehand and angry with my husband & myself for not making sure it was taken care of. It's easier to be angry, but hypocritical of me. Until she was diagnosed, I didn't have my own affairs in order. It's easy to think we have all the time in the world and something like this will never happen to us, but our time here is limited & none of us know when our story will end.
My mother-in-law thought she had more time left than she did, so she didn't worry about what would happen during the end of her life & afterwards. During one of the most emotionally traumatic times of our family's lives, we were forced to see through the pain to make sure she received the level of care she needed, organize her paperwork, plan her funeral, etc. Please don't do this to your family.
Soon, I'll be sharing tips on HOW to get your affairs in order, so that your family only has to make sure your wishes are followed and aren't left with a huge bill when they should be able to just grieve your loss. We don't know when or how our story ends, but we can help make it easier on those we love when that time comes.
Join the newsletter
Subscribe to get our latest content by email.