This week Okaasan will have a small operation to insert a feeding tube "port" into her upper chest area.
Dear Son went into the hospital last week and had the doctor talk about it. He got to meet Okaasan briefly, and while she was still flat in bed - she was alert and seemed to know him. We asked the hospital to move a TV into her room, so at least she has the familiar sounds of tv shows and commercials.
Sigh.
Is this what she would have wanted? I'm pretty sure not.
Are we fooling ourselves making the distinction between tubes into stomach area vs tubes into chest area?
It's a whole subject that most people don't think about, or know about beyond end of life scenes in TV shows. Should we have said differently a week or two ago? Just left her on IV feed into the arm...to get weaker and fade away?
These decisions are so hard. And of course, most of us don't discuss this with family - who are left at stressful times to make choices and decisions. Hard to know what to do.
She's been on a tube into her arm for a few weeks now...now it'll be a tube into the chest area...
HOPING there is a coming stage of end of COVID restrictions to hospital visits, that we can get her into a nice facility...get her some meeting time...wheelchair to summer sunshine time...
Okaasan has gastric ulcers. Lots of them, all over the lining of her stomach. Little white/yellow spots and nodules here and there. The blood from her mouth in the past month has been when the ulcers pop.
No wonder she stopped eating.
A nice, human-friendly doctor at the hospital showed us the full-on color photographs of the inside of Okaasan's stomach - all pink and juicy - apart from the very obvious ulcer spots.
Kind of makes me wonder what on earth the big city hospital was looking at when he poked his probe camera down Okaasan's throat - damaging her pipes in the process - did he take the wrong turn and end up in a different part of her body??!! I'm a language teacher/writer/narrator and even I can see that these white/yellow spots around the stomach are not left over rice crackers.
So. We have an answer. Hooray!
Medicines and care should do the trick. They are getting SOME medicines into her mouth and down her throat naturally, but maybe not enough. They will try to get some food down there too, but will probably revert to the drip tube feeding...and the "port" hole just below her shoulder blades.
Time will tell. Perfect phrase for this situation. Wait and see.
Weird, random thought: I've seen inside Okaasan's brain - the scan at the mental hospital three years ago, and now I've seen inside her stomach. And Dear Son has seen far too much of his mum's rear end. Really, there are no privacy barriers left!
Finally got Dear Son to call the hospital and ask.
The nurse said Okaasan is brighter than on Monday and they may try to get her to eat something! Kind of doubt that is possible actually...more than two weeks she didn't swallow...is it possible to start again?
And the doctor has asked us to go in on Monday for a meeting. So there's that.
Meanwhile, a student to whom I was chatting about all of this reminded me: her father-in-law lived for FOUR years on drip feeding, in a bed, staring up at the ceiling.
Fours years! At the beginning he could communicate a bit, but the last 2 years plus, he basically just lay there and family members came and went. The tubes put nutrients into him, and others took waste away.
Oh my God. I don't want that for Okaasan. I don't want it for me, either.
I started hunting around on the Internet about those Swiss clinics that'll assist in end of life - for me, I hasten to say. Not Okaasan. Of course, there is the added HUGE factor that I'll probably be in Japan, and a long way from Switzerland. I'd have to be healthy enough to get on a plane for Europe.
But I notice Oregon in the US has legalized assisted euthanasia for residents. I have a good friend in that state. I wondered if Dear Son would like to take me to Oregon to live and die.
Anyway. All of THAT exploded in my brain when I considered that poor Okaasan could spend years attached to tubes and staring at the celling.
We'll find out more on Monday, I guess.
Meanwhile, Hokkaido's State of Covid Emergency has ended. But the city of Sapporo (where we live) has moved to a slightly lower Alert Stage - which translates and gets abbreviated in Japanese into "Mambo"...making otherwise serious news broadcasts kind of funny.
It means that bars and restaurants can't serve alcohol, and must close by 8 pm...and I expect places like libraries and art galleries will stay closed? The city's COVID beds are at 79% capacity, with daily figures of deaths still mostly in double digits.
It also means that we maybe can't get into the hospital to visit Okaasan much.
AND!
Bear! Maybe It's appeared on your news - we had a bear running round in the northern suburbs of the city yesterday morning! It attacked and injured 4 people, and was eventually shot by hunters.
Even Hokkaido people were stunned. This is right in the city area, within the expressway ringroad and near subways stations, schools etc Usually bears appear in the forested areas and parks on the south and west sides of the city.
This was totally different. A 5-6 year old, male animal about 150 kg galloping along the streets, crashing thru gardens and panicked.
It attacked two elderly people from behind and pushed them to the ground. One of them it shook several times like a rag doll. At the local army base it was hurling itself at the gates, injuring the soldier inside - before breaking thru into the base.
I hate to see a wild animal like that. Panicked and totally out of its element. And then killed. We all wish there was a better way - to tranquilize it and set it free in the mountains. But the experts say it poses a future risk because it's already lost the natural fears of being near humans, and that a half tranquilized bear crashing round an urban area is even more dangerous.
I know. I get it. And what happened yesterday was at very dangerous level.
But. Still.
Wednesday, 16 June 2021
And here we are again.
Another hospital.
Another emergency. Ambulance. Wait to see which hospital will accept Okaasan.
More tests. Hospital admittance paperwork. PILES of paperwork. A short visit to lower our masks momentarily and wave our love to Okaasan.
Monday morning suddenly the care home hospital called. She had blood from her mouth again.
This time, luckily, one of the hospitals in the care home group had a room and could accept Okaasan. AND the hospital is fairly near to us.
So off we went again.
She looked tiny and frail. But she was conscious as they wheeled her in and and around. CT scan twice...maybe stomach camera again? Dear Son had to fill in miles of paperwork. I found myself thinking - "If/when he is ever in hospital for something I simply don't have the Japanese ability to cope with all this paperwork..."
Anyway. Nice hospital. Overlooks one of the big parks. I think Okaasan knew we were there. She moved her head. Made eye contact and did that mouth puffing gesture.
And so we wait again. Strange to say: all of that was Monday afternoon. And now it is Wednesday - and the doctor still hasn't called to inform us what (if anything) they discovered. And Dear Son, being so-Japanese, doesn't call the doctor himself to ask.
And so. We wait.
I kind of promised Dear Son that I won't make any plans to take the car out of town for hours at a time, so he can get to the hospital quickly. because who knows what the coming weeks will bring?
I feel a bit detached emotionally from the situation. Not my mum. Sad to see, of course. That THIS is what awaits us at the end of our lives - a hospital bed, tubes and strangers talking loudly to us. Dear Son seems nervous to engage with her.
In a very strange way, my experience two years ago with my student/friend who died of Jacob Creutzfeldt disease, is maybe helping me - to approach the person as a person, despite all the hospital surroundings. To touch the person. Talk lovingly to them. Try to connect a little.
And so it goes....waiting for news from the hospital.
Okaasan is sliding ever so slowly into the next stage of her end of life.
Now she has stopped eating - or actually swallowing. The care home doctor says she can't go back to her normal life in the care home, because she is going to need tube feeding. And the care home hospital can only keep her a month or two on this tube feeding - so...
The social worker is looking for a facility - I guess that is a hospital? - that will accept her and feed her by drip feed. Dear Son (and Okaasan for sure, and I actually) don't support stomach tube feeding.
So it'll have to be drip feeding.
Sigh.
And she COULD have the Corona Virus vaccine at the care home soon - they are waiting for their batch to arrive to start giving jabs. It would make getting her into another facility easier, if she's had it.
Because. While she is, obviously, dieing of old age and lack of will to swallow/eat...we don't want her to die of Covid with all the tubes and pipes and panic of THAT death. We hope she can just get weaker and weaker and naturally slip away one day. Probably one day soon...this summer?
Or, if the State of Emergency is lifted here a week from now - and the care home opens up to family visits. Can we get in to see her once a week, and will our visits give her the motivation to eat again? Avoid all of this?
The timing isn't great. She WAS eating something at the big city hospital 10 days ago. But not now.
I gather that if you stop swallowing for too long, restarting in the elderly gets harder and harder. So, it would have to be a big change in the coming weeks to get her back to eating again.
All of this actually happened 4 days ago. But this week has been horrendous for us with a sick cat and me on less and less sleep...plus a dentist big visit...and all sorts of other things.
So. Just telling you now. I haven't had a quiet moment near the computer with enough brain cells to muster.
As has been said by many commentators, the Covid situation has reached into the lives of so many people - directly and indirectly.
IF there wasn't a Pandemic we would have continued our weekly visits to Okaasan. Had the little happy trips out with the wheelchair to see flowers in gardens and visit coffee shops. Karaoke in the care home canteen room.
She would probably be happy and eating now. Going to day care to practice walking, and ball catching. Making simple handicrafts. Snoozing near the TV.
But. Now she is too weak to sit up. And giving up on eating. Sliding to the next stage of end of life.
She was moved Monday this week from the big city hospital, back to the hospital of the care home. Dear Son got to see her again, briefly, before the transfer and said she maybe recognized him, but looked very weak.
Two weeks in a hospital bed, no cheerful day care people making her walk around a bit. Her muscles aren't strong anyway, and two weeks in bed will have really had a bad impact.
Guess she will stay in the hospital section for this week, and then move finally back to her floor and her own room again? We hope so.
And the cause of the sudden coughing up blood is still unknown. It only happened once. It wasn't from the stomach. And that's all we know.
And Covid.
The care home hospital will have vaccines for its residents - so we hope Okaasan will be deemed healthy enough to receive hers, on schedule.
You may have read in the media, Japan's vaccine roll out has been painfully slow. Getting a little better now - but it seems the central government didn't plan early enough for things like mass vaccination sites, training up staff to administer the shots and HOW to clearly inform people. Actually, a lot is left to local government.
Seniors in my city are just now getting vaccinated with their first shots - only started June 24. Friends living in small towns fare better, because the authorities plan for the whole community and order up enough doses.
My age group will probably be reservations in July or August - for shots in August or September...at this rate. Sigh. My Facebook is full of happy, strangely jarring pictures of families and friends meeting up, unmasked, sharing beers, attending concerts, hugging.
I'm delighted for them. Really. But it is a head-shaker that I live in one of the richest countries in the world, with a good health care system and yet we are SO far behind on this public health situation.
