Friday, April 09, 2010

Tired and Teary

I took another pretty picture of Liz's garden, but Blogger keeps eating it. Who knows?

Anyway, I arrived on time this morning after a smooth trip; I even managed to doze a bit, although I was in a middle seat. Liz and I went straight to the hospital. Last night, Mom was unresponsive and had been given forty-eight hours to live; this morning, she seemed to be much better, awake and oriented and alert, cracking jokes, much more her old self.

As the day progressed, though, she got worse again. She ate a little breakfast but no lunch, although she's still drinking water. Although she had some moments of lucidity, she spent most of the time sleeping and engaged in a lot of what palliative-care folks call "terminal restlessness:" throwing off the bedclothes, jerking her head or hands spasmodically, picking at her hospital gown, reptitively reaching up to wipe her lips, hair and face. Twice while I was there -- from about seven in the morning to four in the afternoon -- the nurses gave her morphine to calm her down. She was sleeping soundly when I left.

Liz and I met the palliative-care doctor, who feels that Mom's absolutely in the right place, and who -- when I followed her into the hallway to ask about possible timeframes, a question she'd clearly been expecting -- said, "My gut sense is a couple of days, a week at the outside. But I've been wrong before."

Her gut sense matches mine and Liz's; Liz and I wouldn't be surprised, in fact, if Mom died in the next twenty-four hours. Mom was looking and acting very, very much like Dad in the day or two before he died. Even Liz noticed the similarity between photos of Dad I'd sent her during that time and how Mom looked today.

So we think this is it. If it's not, Mom can stay in this inpatient hospice unit for up to six months with insurance coverage. Yay! The unit itself is quite lovely: there are homey touches in each room, like curtains on the windows and real bedside lamps and brightly colored lap afghans crocheted by volunteers. There are several lounges with couches where friends or family can sleep; there's also a recliner next to each bedside, and I spent quite a while napping in that today while Mom was napping in her bed. There's a kitchen with several microwaves and a fridge where families can keep special things for patients or themselves. Loved ones have 24/7 access to the unit -- no limitations on visiting hours -- and there are interesting programs like an art-therapy gruop for people who've been bereaved and a movie discussion group for the same population. We met an art-therapy intern who stopped by to introduce herself.

So I give the place high marks. My only quibble is that Mom has a roommate. I spent some time talking to this lady, who was lonely and had been crying out for her children (a daughter had visited earlier in the day, but had to leave to go to work), and I told the nurse when she asked for cranberry juice. While I'm glad I could help her, I also don't think it's fair for her to have to listen to Mom's dying process or for Mom to have to listen to hers, or for either family not to be guaranteed privacy with their loved one.

But we don't live in a perfect world. Space is limited all over, and this unit is already so much nicer than most of the places Mom could have wound up that my main feeling -- and my sister's -- is sheer gratitude that it exists.

I told Mom over and over today that I loved her and what a wonderful mother she is. When Liz went home to take care of some other family business, I stayed, and gave Mom permission to leave if she needs to. I promised her that while we'll always miss and love her, we'll be okay, because she's given the ultimate motherly gift of equipping her children to survive without her.

At the time, I wondered if I should have waited for Liz to be there before I said any of that, but when I told Liz later, she was glad I'd said it, because she'd wanted to and hadn't been able to.

Liz and I left around five -- we're both exhausted -- to come home for a very nice dinner her husband had fixed for us. After dinner, Liz gave me some things from my stepmother's apartment, and then we went upstairs and lay on Mom's bed and cried about how much we'll miss her, and what in the world are we going to do with all her shoes and pictures and figurines and . . . it's impossible to look anywhere in the house without seeing something she made, something that was originally hers, something she gave us or we gave her.

Then we dried our tears, and Liz went downstairs to relax a bit before bed, and I came into the guestroom to blog. Both of us have outfits laid out next to our beds, so that if the hospital calls in the middle of the night and says that Mom's going downhill quickly, we can get dressed right away and get over there.

I really hope that doesn't happen.

Tomorrow my uncle, Mom's brother, and one of my cousins will drive down from northern Jeresey to see Mom and us. Another cousin may fly in from Phoenix; he hasn't decided yet. Gary's standing by in case he needs to fly here out for a funeral. Liz and I talked a little today about researching funeral homes and about cremation versus embalming, but we haven't decided anything yet. It feels like a betrayal even to think about this stuff, although we both know it's necessary; we're both hoping for the "miraculous recovery" even the palliative-care doctor acknowledged to be possible.

I just hope I can get a full night's sleep tonight.


  1. I'm feeling a little weepy remembering Mom's "terminal restlessness", the wonderful hospice staff, giving her permission to go, waiting for "the call". I wish I could give you a hug, but I'm glad your sister is there to supply hugs. My prayers are with you both.

  2. Anonymous7:54 PM

    Oh, Susan, my heart goes out to you and Liz. You are in my thoughts and prayers.


  3. Anonymous11:41 PM

    Dear Susan,

    I'm glad your mother is in such good hands. It sounds as if you and your sister are doing a great job of taking care of her, taking care of yourselves, and letting others take care of you. This is hard work, but you are doing it so well.

    I hope you sleep well,


  4. Anonymous4:49 PM

    Susan, I urge you to take care of the decision-making sooner rather than later. That doesn't necessarily mean your miraculous recovery can't occur, but it does mean you and Liz are doing what needs to be done AND taking care of yourselves. Trust me on this.

  5. I wanted to comment on this to thank you for writing this. I've been following your blog for ages, and when I read this I had no idea I would be facing similar circumstances so soon aftewards. My mother was diagnosed with cancer around the time this was written, and was told it was terminal a few weeks later. Two weeks after that, on 11th May, she died. In the last difficult week and the awful last day and night I remembered what you had written in this entry, and the others and it helped me cope. I recognised mum's symptoms - the terminal restlessness - before the hospital staff told me she had a few days left at most.

    Thank you so much.


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