What it’s really like

Have you ever read an obituary and seen the phrase “She died at home, surrounded by family and those she loved”?  It sounds almost comforting, doesn’t it? Like a desirable way to go, if there were one.

Lemme tell you what that’s really like.

Friday, December 23rd. We were told by the Hospice nurses that someone would have to stay with our stepfather 24/7 now, to help him with our Mother. We’d been spending days and evenings with her, but going home at night because her pain medication would have her sleeping most of the time anyway. So that night, my sister and her husband stayed quite late, going home only because Jerry said he’d be fine.

Saturday, December 24th. Jerry called my sister Kim in a panic, unable to administer Mom’s medication because she was fighting him.  They rushed over and helped out, able to distract her and talk to her while he got her medication into her mouth. Thankfully it was liquid, and would absorb through the cheek.  Later that morning, Kim called us, to take a turn at the house. Cindy and I were planning to spend Christmas Eve with Jerry anyway, so we packed up some stuff and drove over, spent the day and afternoon, then took a quick break at Kim’s house to give our nieces and nephew their Christmas presents. Kim had made a nice dinner, and we all took an hour break, then Kim and her husband packed overnight bags and headed over to spend the night helping with Mom.

Sunday, December 25th. It’s Christmas morning, Cindy and I got up and put a turkey in the oven, then took our turn. We packed up dinner, and overnight bags, and drove over. Kim and Jim had just left, so we had dinner while Mom was sleeping – she had a hospital bed in the family room, visible from the kitchen and dining room, and hadn’t been out of that bed in a few weeks.  She had officially stopped eating and drinking a week ago, one month after saying she would no longer take treatment for her cancer.  At the end of dinner, she woke up. The only thing she could say was “Ow” so it was time for her pain medicine.

Mom has pain patches on her skin, but the pain breaks through that, so you have to give her liquid pain meds to take care of what the patches aren’t controlling.  She doesn’t really know we’re there, but when Jerry tried to give her the liquid for the pain, all hell broke loose.

With Cindy on one side of the bed, and me on the other, we had to hold our Mother down so Jerry could give her the medicine for her pain. She screamed at us, insisting she doesn’t need any medicine, she doesn’t take medicine, and she has no pain. She’s out of her mind, telling us that her husband is trying to kill her, and what he’s giving her isn’t medicine, it’s going to kill her.  We try to assure her it’s not, that he’s not trying to kill her, he’s trying to help her, but she’s having none of that.  The pain is so severe, she can’t even see straight, but she’s convinced he’s trying to murder her.

I spent Christmas holding my mother down, while she thought I was letting her husband murder her.

We had to repeat that every 4 hours.

One minute she remembers our names, the next, she’s asking to see people from our past. She won’t willingly take a nap because she thinks she’s somewhere else, or wants to go somewhere else, or gets angry because we won’t let her go somewhere. She starts sentences and only gets three words in, then repeats that over and over and over. She asks if this is real, asks if we’re lying, tells us if we promise, we’ll go to hell. She wants up, so we help her up, then she wants to lie down. She wants to leave, but then asks how she’ll get home from here.

None of it makes sense, she’s out of her mind completely now, and they tell us that’s normal, to be expected.

I’ve been staring at a painting on the wall for so long now, I can see a face in the mountain.

Monday December 26th, Kim and her husband are taking over tonight. Cindy has to go to work on Tuesday morning but I have the week off. The Hospice nurse came by at 11:00 to check on us all, and she says Mom has probably no more than 24 or 48 hours left. Her breathing is abnormal, her oxygen saturation levels are in the 60’s. Thankfully she hasn’t woken up since 4:30 that morning. We’ve been able to put the morphine into her open mouth as she sleeps, before the pain can wake her up. It absorbs through her cheek so she doesn’t even have to swallow it.

Tuesday, December 27th. We expected Mom to pass during the night, since the nurses told us that would probably happen, but there she is, still breathing. She hasn’t woken up since Monday morning at 4:30. Kim and her husband spent the night on the floor listening to her sporatic breathing, all the while thinking “is this it?”  She takes a breath then goes nearly a minute without anything, but then goes for a while breathing normally.  Cindy had to go to work, trying to find some bit of normal life for a while, so I came over to take a turn during the day.  We all watched and waited, then Cindy came over after work, expecting this was Mom’s final  hours.  But by 9:00p.m. we realized things were going to drag on. Kim and her husband volunteered to spend another night, so I promised to come by in the morning again with coffee.

All night, I expected a call, and all night Kim expected to be able to call, and say it was over.

Wednesday, December 28th. With no call, I got up at 7:00 and brought lattes over. The nurse was there, again promising Mom had only a few hours left, she was sure. Kim and Jim needed a break, so Jim went home for a shower and some lunch, while Kim and I stayed, watching Mom breathe and watching Jerry say Goodbye for the hundreth time.  Mom’s officially been in a “coma” for days now, but her bladder is full – so the nurse wants to insert a catheter, and I’m the only one there willing to assist.

We’re stressed, exhausted, and at wit’s end. Jerry hasn’t slept for more than a few hours at a time, he keeps talking to her, fussing with her blankets even though Mom’s completely comatose now. Jim came back from his shower, so Kim went home to clean up. She brought me a sandwich an hour later.

I left that night at 5 so I could go home and make dinner. There’s no point in having Cindy go there, Mom’s in a coma now, and we’ve said Goodbye so many times.

Thursday morning I got lattes again and went over. The nurse is there again, baffled as to how Mom is still alive.  She says if we’ve inherited her strong heart, we’ll live forever.  Kim and her husband are exhausted, and Kim can’t take it any longer. She thinks if we all go home, and if our stepdad could just go upstairs and get some sleep, maybe Mom would pass.  She never wanted us to sit around and watch her die, she told us as much, but we’ve had to be there to keep her husband from going nuts. So in the early afternoon, we all left.

Thursday afternoon, our stepdad has called – he’s too stressed out and upset, asking if someone will come over tonight and stay, he can’t take the stress any longer.  My sister asked him to go upstairs and get some sleep, and if he needs us tonight, we’ll figure out who’s coming over.

Thursday evening, at 6:00, my Mother, Joyce Elaine Kohler, died. She passed peacefully in her sleep, at home, surrounded by family.


3 thoughts on “What it’s really like

  1. I am so sorry for your loss. I lost my mom two years ago, and although she lingered for two weeks (hospice kept telling us it would be any minute), I had my brothers and sisters to help comfort me. She died with 2 of her daughters sitting and holding her, the rest were in different rooms in the house. I can only tell you to be good to yourself, let you and your sister find comfort in each other. Your mom is now at peace and is in a better place, and it is those left behind that have to cope with our lives and go on. You are stronger then you think, and know so many people are covering you with their love.
    Susan Monica

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