Monday, January 26, 2015

Waiting

Mum is very weak. Fifth day of waiting. Grocery shopping and then I'll be at the hospital.

Friday, January 23, 2015

Further palliative

Or, actually, things could speed up a whole lot more than that and we could be already waiting and holding vigil for Mum. Any day now.

Thursday, January 22, 2015

Palliative

Barring sudden miraculous discoveries or interventions or something, we're going to do palliative care for Mum. Dad wants her to do it at home. Today I am meeting with a palliative specialist and a social worker and calling the CCAC, because the CCAC does in home palliative care. Mum can no longer swallow, and the choices were stomach tube or palliative. Stomach tube doesn't extend life very much for late stage dementia patients.

My head is full of details, all of them painful. Rearranging the living room at Mum and Dad's, how do we get private care to fill in, we need a hospital bed, My aunt is flying in, we will need to plan the funeral, we need to find an undertaker. Planning the funeral, which feels like a betrayal, because she is still alive. But palliative this way tends to last for seven to ten days. I was lying in bed last night, thinking blankly, "Next Saturday. By next Saturday my mother won't be alive anymore." It's not something the mind can grasp.

The children test my patience and ground me in now at the same time. We're still reading, playing, they still need clothes and food, I still need to shout, "Go make your beds!" and "You can't hit your brother with that dinosaur!" all the time. They are, thank God, not going to stop being little sinkholes of need.

Wednesday, January 21, 2015

Strength like a potsherd

More or less. I feel desiccated and overrun. After I got back from the hospital last night I lay in bed, trying to relax enough to sleep, and over and over the arguments pro and con feeding tubes and palliative care went whirling through my head. I am torn- does putting a feeding tube in mean sedating my mother most of the time? Will she get better enough to be responsive? Are we helping her by doing it or is her body shutting down and making food and water a burden? I saw, and still see, my mother gradually dehydrating until she dies, if we don't intubate her.

My dad thinks she wants to die, that she's refusing food and water because she is ready to go. I am not sure, and I am terrified of asking her- terrified that she'll say yes, and equally terrified that she'll say no, and we'll be required to keep her alive by extraordinary means.

Back to the hospital this morning, and then she'll probably be discharged. I am very unhappy with the level of care at the nursing home, but if we haven't decided for sure on palliative, and we won't before the swallow test booked on Thursday, then we can't get her transferred to the palliative floor of the hospital. We just have to be at the home every day, twice a day and ride them very hard and make ourselves extremely fricking unpopular with the staff.

Hospital, transfer back to nursing home, meeting with Mum's (and our) GP to discuss options, and then home to collapse and be sad and worried until tomorrow with the next test. Kyrie eleison.

Tuesday, January 20, 2015

Sleep deprived

Must make tea and get ready to haul everyone out of bed at the crack of eight. I 'slept' with Miriam from 12-7:30, so I am very bleary. She was at first having a nightmare and then, after I returned very briefly to my bed, she was coughing herself awake. When I returned she was in full Happy Play Mode and I told her sternly to go back to sleep, lay down beside her, and tried to ignore the rolling around and arm waving. She fell asleep after a couple of hours. Death and ruin, miserable child. That's what your mother feels like today.

In spite of tiredness I need to go visit Mum today and make sure they're giving her pureed foods, ask about the test for the UTI, and see if they're delivering the wheelchair today. And then go over and talk to Dad about the repercussions of what is happening, which look to me right now like she is going to die within not very long unless we get a stomach tube put in.

WILL love thee, O Lord, my strength; the Lord is my stony rock, and my defence : my Saviour, my God, and my might, in whom I will trust, my buckler, the horn also of my salvation, and my refuge.
2 I will call upon the Lord, which is worthy to be praised : so shall I be safe from mine enemies.
3 The sorrows of death compassed me : and the overflowings of ungodliness made me afraid.
4 The pains of hell came about me : the snares of death overtook me.
5 In my trouble I will call upon the Lord : and complain unto my God.

I'm good at complaining.

And at re-reading books, and sitting around chewing my nails while I stare at the piles of housework while the children all tumble around me shouting for things like more juice and another movie and sometimes another book read aloud. And I lament and shovel goldfish crackers and pretzels out to fill their gaping little mouths.

Must get up from computer and go make tea and shout briskly up the stairs.

Wednesday, January 14, 2015

Poetry

We read Fern Hill last night for the girls' bedtime story, and Elizabeth liked it so much she took it to bed. We haven't been reading The Barefoot Book of Classic Poems that much, but we've been reading bits and pieces of my A. A. Milne collection and watching Much Ado About Nothing, which we finished last night. The kids mostly really enjoyed it, and they were easily able to pick out the bad guy by his scowl. There was great excitement about everyone getting married at the end.

After we finished I put on the St. Crispin's Day Speech by Branagh (again), and pointed out that it was the guy who played Benedick. They tolerated it with me explaining what was actually happening, ("They're all scared because the French have a lot more soldiers, but the King is saying they're all lucky to be fighting together...") I keep force feeding them poetry and good books. I also keep thinking about the basic position we're trying to communicate by example: everything is interesting. The world is marvelous and complicated and weird and full of beauty. And you have to love Dylan Thomas and T. S. Eliot or Mommy will disown you.

Monday, January 12, 2015

Mum's in a wheelchair

She fell twice today, and apparently is having such a hard time standing that she's in a wheelchair now. Geoff saw her today- we saw her yesterday and she could walk- and he said she couldn't stand without help and was also having trouble chewing and swallowing, although we don't know if that will be ongoing.

On the little bright side I made the kids do ten minutes of sit-down schoolwork today, and it happened, and we did writing practice and started phonics for Thomas. But oh, my heart hurts and I am sad, so I will drink this wine and eat this caramel ice cream and then go to bed. In the words of Drax the Destroyer, "Let us put more of this liquid into our bodies!" and then off to bed.

Hobbits

Nothing important, I've just decided Thomas is a hobbit. He's short and furry and loves big meals and planning parties and giving hugs and being at home and talking about family. He's clearly a hobbit.