Is that all there is?

November 2, 2007

The plan is now that Arthur will move into Idlewyld Manor on Monday morning. Though it has been rebuilt in the past five years or so, the nursing home traces its history to the mid-19th century. It's a non-profit organization, not part of one of the new chains. I visited this afternoon, and it seems generally pleasant and cheerful. It's about a 15-minute drive from here; could hardly be more convenient.

Though I'm sure it is time to make such a move, I still feel shocked and slightly disoriented -- but also hopeful and thankful.

Love, Mum

---

November 4, 2007

I moved stuff into Idlewyld this morning, stuff home from the hospital this evening. He is sad, and I am sad for him, though much relieved for myself. I hope that he can still charm the staff and other residents, and make himself a life there. Change is hard.

Love,
Mum

---

November 5, 2007

I arrived at Idlewyld this morning the same time as the ambulance. HAV wasn't having such a good day (or good morning), even a bit confused, and in a way that made it easier. The staff are pleasant and welcoming. After lunch he said the food was better than in the hospital, another plus.

I went back this evening. His day had obviously improved as it went along. He told me how good the supper was, and that Idlewyld is nicer than St Joseph's Villa, where he went on the respite stays. One of the staff on this evening was a tall, pleasant young black guy from Guyana; nice to have a feeling that some of "your own people" are around you. He is busy making friends (except he had a row with the nurse over his insulin dose). So I am thankful and hopeful.

Love,
Mum

---

November 9, 2007

Things don't get better, they don't even stabilize. Could they turn around just as quickly? or at all? The staff at Idlewyld counsel patience, and indeed, what else could they say?

Tower Poetry Society meets tomorrow. My muse likes the occasion, so she generally comes through with something to take. This is of course a first draft . . . comments / advice welcome.

Love,
Mum

Friday song

Respite stay, hospital,
now nursing home
Inside two months
you’ve lost yourself.

When did I promise
I’d protect you?
Fool to feel failure:
the impossible task
inevitably burns
to reek and cinders.

You ride your scooter
through trackless hallways
till they take you back
to your television.

It wasn’t my karma
that brought you here
but surely your karma
accumulating all
those heedless years.

Will you still know me
on Monday morning?

Will time tease apart
your karma and mine?
Will my muse still sing
while you sit slumped
forgetting even
that there might have been
songs worth keeping
in memory?

MV
November 2007

---

November 12, 2007

We saw the Idlewyld physician today. He is pleasant to speak with, and welcomed the information I was able to give him. He didn't get much of anything useful from the hospital (he mentioned pages of faxes of old lab results), and the discharge summary can take 3 months to arrive (! ! !) because the people who transcribed them were among the "non-essential" staff shed in response to budget shortfalls.

Dr N is depressed / distressed at the situation in long-term care facilities. They are over-stressed and under-funded, having to deal with high-needs residents without the resources to do so safely. He says Arthur should be in a "complex care" bed, but the Ministry of Health reduced the number of those beds in one of its periodic money-grabbing raids on provincial health-care funding, so now you are only eligible for a complex care bed if you have oxygen / IVs / catheters . . . He says the Ministry now has no physicians on staff -- they all resigned at some point, and the Ministry replaced them with people without any medical knowledge, who end of dictating standards and funding levels -- it seems to be approaching a similar situation to the HMOs in the States, though with less mico-management.

Arthur seemed a bit more with-it today. After seeing Dr N we sat and worked on a crossword puzzle. We'll see what tomorrow brings.

Love,
Mum

---

November 21, 2007

I went in to see Arthur early, and found him asleep, so I did errands instead of visiting. Have the papers to sign, which I will look at tomorrow morning.

Someone had phoned Idlewyld and told them I was looking to move Arthur. Message on my phone said that a bed in his first choice nursing home had come up and I should phone quickly and tell them if we are taking it.

So I will phone tomorrow and then look at the papers.

The super came and cleaned the bedroom carpet, and it actually came clean!So I can move furniture and phone and look at papers tomorrow morning.

I also have to go back to Dundas tomorrow to buy DARTS tickets, and phone DARTS and accept their arrangement for taking Arthur to his eye-doc appointment on Monday. So I can do the two DARTS errands and move furniture and phone about the other nursing home and look at the Idlewylde papers tomorrow morning - - - should probably do the wash, too - - - or maybe I'll just stay in bed with the blankets pulled up really high - - -

It rained hard all day today, and snow is forecast for tomorrow.

Love,
Mum

---

December 5, 2007

He was pretty much out of it today, half asleep and not very responsive. Told me he had trouble with his TV; that was about all. I turned it on and something was different -- 50 was now the weather channel, instead of Space. I found Space by paging through, and left it there -- hope it works for him. I tried doing the crossword with him, but he was having trouble focusing on it, mind rather than eyes, I think.

Love,
Mum

---

December 6, 2007

Got lab results today. Have been working on them (this is why I'm so late finishing off and going to bed). E.g his hemoglobin is lower than before, and they are giving only half dose of Iron he was getting before. Could be a connection, wouldn't you think?

I'd better stop for now, finish tomorrow.

Love,
Mum

---

December 7, 2007

I don't think it can wait until the care conference. It may be why he's been going down-hill so rapidly -- I seem to recall that he got unresponsive/ out of it when getting anaemic on dialysis.

Also that blood work was done on 20/11, so it has presumably gotten worse over the last ~18 days.

I did try to sleep, but find this very upsetting. Love,
Mum

---

December 11, 2007

I gave the nurse at Idlewyld a note for the file for Monday's appointment, and asked what had happened about the iron dosage. She said that the Dr. had decided to order blood work again; thought perhaps it had been done today. Will be interesting to hear where hemoglobin etc values are now.

He was in bed asleep when I arrived. I didn't insist that he wake up, so when the staff woke him he felt cheated of the afternoon visit. So next time I'll really try to wake him.

Love,
Mum

---

December 15, 2007

I went in early to see Arthur (before lunch instead of usual before dinner) because of the forecast storm (which has not yet materialized -- but hey, that's okay). He was cross with me, said I just come when it suits me. Said that when I was in hospital, or where-ever, he . . . That was hard to understand, except maybe he wanted to say that when I took leave he had to stay the whole time in the Villa, but I don't come and stay the whole time with him now? When I asked if he would rather I came before supper, he didn't answer. So we finished a cross-word puzzle together, and he did contribute.

Went for groceries on the way home; seemed like the whole population of Hamilton was in the store.

After supper I'd been enjoying a quiet evening at home, working on my Christmas messages, when the nurse at Idlewyld called me to say that Arthur had fallen (staff came in and found him on the floor) but seems un-hurt. They will monitor him carefully tonight. He has been asking me to bring in his stick; unfortunately doesn't forget that he has asked for it. So I'll have to tell him plainly that I will not bring it, and he will have something else to be angry about.

Love,
Mum

---

December 17, 2007

I didn't go in to see Arthur yesterday, as there was a severe storm warning, and the day was indeed at times severely stormy (though at other times the snow just drifted down . . .)

I brought Arthur some of the Christmas cards, letters, e-mail messages that are now flooding in, and read them to him. He had some difficulty in identifying some of the senders, and some of those to whom they referred in their letters.

It turns out that the second set of lab work has not been done yet -- according to the nursing clerk, the technician tried to get blood and could not. This is not surprising, as it has been increasingly difficult to take blood from him. While he was in hospital a dialysis nurse came and took blood from his dialysis graft, as only those trained to do so in the dialysis unit are allowed to use it. This is particularly ironic because, in the self-help dialysis unit where we went, I could have learned to insert his needles (and could now presumably go in with a butterfly needle and drawn blood for the lab work). I chose not to do so because needling was painful often enough that I saw it as a point of potential conflict, and decided it was better to let the techs do it. The graft is now in the process of closing (clotting up) -- the surprise being , not that it is now failing, but that it lasted 12+ years. So it wouldn't have been an option much longer in any case.

The lab technician will try again this week. Meanwhile nothing is being done about the possibility that his iron stores are low and consequently he could be anaemic, and that could account for at least some of the difficulties he is experiencing. The doctor wants another set of lab results before restoring his iron supplement dosage to the level he has been taking for it seems to me the past 10 years.

The whole thing seem like an exercise in wading through molasses. I have a sense of urgency because it has always seemed to me important to hold the line -- when he has lost strength or function, too often it did not come back completely; sometimes not at all. What should theoretically be reversible, in practice may not prove to be so.

Love,
M

---

December 21, 2007

Arthur's annual care conference was this morning at 10:30. He could not come, as it coincided with his bath time. I don't know if it would have been useful for him to have been there . . .

Recreation

He had been going to less activities as time goes on. She was not concerned; finds it takes people some time to settle in . . . I am concerned, because that coincides with my impression that he is going down hill quickly. I suggested they try to involve him when they are having word games, hangman etc. She said she will also try to find him someone to talk to.

Nurse:

(a) Lab work has not yet been down (at least one attempt failed). They will try again, perhaps today.
(b) Blood sugars well controlled (gave printout)
(c) Nurse comments/passes on physician's comment on how well HAV is, considering all his health problems

Food services

(a) Happy to hear that he likes the food. He generally eats well.

The care conference is annual, but concerns can be brought to staff at any time.

Afterwards I visited with him in his room.
He phoned twice today-- confused / incoherent.

Mum

---

December 22, 2007

Arthur was confused today.

I've been shredding paper . . . .

Undoing
What have I
to do now
but undoing?

Your books
so many unread –
you kept buying
long after
you stopped reading.
(I tried to tell you.)
It should be easy
to box them up,
give them away
but I can hardly
lift my hand
to take them down
from crammed shelves.

My bathroom cabinet
was easy to purge
of your supplies;
I’ve hardly started
on your cabinet.
Perhaps the scent of you
keeps me off.

Papers, letters,
drawers of records
of who you were
(I helped you compile them) –
I shred and tear
pile into
too heavy
blue boxes.
Kitchen cupboards,
cans, jars, packets,
(I begged you,
Don’t buy so much.)
It should be easy
to bag for the food-bank,
but though you live yet
or partly live,
your ghost stands
angry in the kitchen,
bars my way to
your precious supplies.

I imagine a future
when the task of undoing
falls on our daughter.
Our two ghosts try
to face her down.
She doesn’t notice,
fills the dumpsters,
sells the condo.

When all’s undone
(I hope for her that)
she runs free.

MV
December 2007

---

27 December, 2008

Doctor N called this morning; he had seen Arthur and was surprised (didn't use that word) how much he had gone down. Said perhaps small stroke(s) might account for confusion, inability to feed himself. Said scooter is not safe (I told the nurse that several days ago). I discussed changing order (to 'don't take to hospital'). He said Arthur should go if e.g fall and dislocation or fracture (of course!). I will also look at appointments, cancel some. Dr agrees that recovery less likely as time passes, but cautions it still might happen. Re Fe gluconate dosage, he is still waiting for lab result.

When I went in I talked to the nurse, signed the changed order (amounts basically to "keep comfortable"). She says they can administer morphine if needed. Also that they call the family if there's any sort of crisis, and what has been signed doesn't really mean much (she didn't say it in those words) because at the time when there's a crisis they outline options/recommendations, and family decides what to do. Maybe the written order helps family to stick to their original decision? I didn't like Dr N talking cheerfully about fall and fractures and dislocations, but have to admit that it probably does happen (since HAV has been falling for some time) without being the fault of the Manor staff.

Arthur was in full Teapot mode. He was talking about a tunnel, another underneath, and another under that, and pointing to the TV, which was playing a Starship Enterprise movie without any tunnels visible to me.

Love,
Mum

December 30, 2007

Arthur has continued to decline over the past week. He doesn't feed himself now, and for several days hasn't talked about anything that can be understood. Some days we sit silent; some days he is talkative but seemingly off in a dream, often not finishing sentences.

On Saturday two members of his Buddhist group came to see him. He was talkative, but as though in some dream-space; there was no possibility of conversation. They decided to chant for a bit, and finally he began to join in. Then he smiled at them, and it seemed that perhaps he knew them.

A and D arrived Friday. We hope that Arthur realizes that they are here, but hard to tell. We will celebrate the arrival of the New Year tomorrow. Earlier I expected Arthur would be able to participate (I could not imagine he would deteriorate so quickly), so I arranged to have a room at the Manor that the make available for family parties. Now A and I are trying to decide what to do -- whether having several people about and general conversations will tire or distress him, or whether he might indeed be present enough to enjoy being part of (what it seems would be) one last New Year's gathering. I'll go in to see him tomorrow morning, and then try to decide what to do.

I wish you, and us, all the best for 2008!

Love,
M

January 1, 2008

We had a pleasant gathering of family and friends on New Year's Eve at the Manor. Arthur did enjoy the occasion, rallied enough mid-meal to take over eating without help. He also participated in the conversation from time to time, and with abundant goodwill and creative listening on everyone's part it went well. So we were very glad that we decided to have our celebration there.

W drove back home after dinner. A and D set out for Ottawa and E for Toronto today. Though it's a snowy day, checks of views from highway cameras were not too daunting -- particularly, the traffic appeared to be light.

Wishing you the best for 2008, Love,
M

---

January 6, 2008

I hope that you had a joyous Feast of the Epiphany!

Arthur continues in a better state than he was for the last half of December, though not quite back to his normal self. I'm giving him water when I visit, he sometimes takes around half a litre. I'm wondering if the rapid decline was mostly due to dehydration? They were leaving drinks for him, but not making sure that he drank them.

Love,
M

---

January 8, 2008

I picked up another appointment -- Techs who come to Idlewyld can't get blood from HAV (no blood taken since Nov 10, so haemoglobin level/ iron status still unresolved), so Idlewyld people propose to send him out to a lab. They are arranging DARTS. First proposal was for 07:30, because a fasting blood sugar was on the req . I countered by suggesting that they just test his blood before breakfast to get a FBS. Nurse (?) tried to tell me that what the lab does is something different (and more holy?) than what they can do with a glucometer. I asked if there wasn't an HbA1C on the req, and she said yes, but read it back to me as HbAIC -- she can't really be a nurse; must look carefully at her name-tag. Anyway, we agreed to skip the FBS and go at 10:00; then it turned out that they are proposing a different lab than the woman I talked to earlier mentioned . . . don't suppose it make that much difference. So that's for the 15th.

Love,
Mum

---

January 15, 2008

We went to the lab, and they succeeded in getting blood. Yeah! I wonder how many more times they will be able to do it? I'm so glad I protested them putting him on Coumadin while he was in hospital -- it requires frequent blood-work.

Love,
Mum

PS he was generally confused and non communicating today.

---

January 20, 2008

Things have not been going well for Arthur. They called me at 04:00 Saturday morning; his breathing was laboured and very fast, and they were going to give him oxygen. They asked if I wanted them to send him to hospital; I said not. I spent most of Saturday and today there. When I go in he has pulled the oxygen tube off his face, and is agitated. I put it back and hold his hand; then he more or less settles down, but talking a lot without making much sense. He's planning a trip -- he wants me to help him dress because we are going somewhere . . . I hate to leave him alone, because I'm sure that, once I'm out of the room, he'll have the oxygen off again. I'll have to see if I can find someone to sit with him part of the time.

The doctor is to see him on Monday; I hope he has some good ideas about what to do next.

Love,
M

---

January 22, 2008

Arthur continues to lose strength. One of his Buddhist friends sat with him this morning. I'm not sure he knew I was there this afternoon. He was no longer talking; harder to give him fluids. The nurse thinks both lesions are now infected and breaking down; it will be a test to see if the antibiotic will be enough to help him withstand everything.

Love,
M

---

January 23, 2008

Much like yesterday. He is hardly swallowing now; will be hard to keep him hydrated.

They did an X-ray; found no pneumonia and only minimal congestive heart disease.His breathing is less bubbly, but still very rapid.

One of his Buddhist friends sat with him while I went for a massage this morning.

The physician is to see him tomorrow morning; I asked that he call me afterwards.

Talked with staff about their palliative care arrangements. They can give morphine; will put a special mattress; have an arrangement for hydrating that I didn't quite understand; come in and turn the patient, do mouth care. They have a sign (little butterfly on a magnet) that they put on the door as a signal to staff.

This afternoon it was there.

Love,
M

January 24, 2008

I spoke with Arthur's physician this morning. Prognosis bleak; his best guess is 72 hrs (though he cautions that such estimates are often wrong). We also have Arthur's own declaration, one of the last things he said clearly and firmly, that he would be leaving on the 26th.

Love,
M

Arthur, November 1, 1931 - January 24, 2008 (17:30 E.S.T.)