Okaasan and Dear Son - together again!
For a brief moment in time - thanks to Covid.
This is Okaasan about to enter her forever care hospital - just 10 mins drive from our home. She dressed in her fave red cardigan, with newly washed and brushed hair. She was awake and responsive to all the old hospital staff farewells, and us, and the special taxi driver, and the new hospital welcomes. Dear Son got to ride in the taxi with her for the 20 mins between hospitals, and all in all it was a positive transfer.
So, now she is there. Attached to three lots of tubes: food and medicine tubes going in - and pee going out. Big mittens on her hands, and straps across her body and from her wrists to the bed to make sure she doesn't pull it all out and run screaming from the building. Like I would.
Such is this kind of care in Japan. One of my students who works in a hospital said she and her colleagues are holding a working group in her place of work to try and rethink if the bed restraints are necessary in all cases - because she said it's just so automatic and many of the staff don't like it. She asked me about the UK. But I don't know. Maybe calming down drugs are used more? Do we actually tie elderly demented patients to beds?
Anyway.
Okaasan's new home.
We had a meeting with the admin staff, then the doctor, then the nurse, then the admin staff again. All super efficient.
The doctor, a straight-talking older man, went on and on about how the blood pressure meds were not a good idea. My Japanese isn't good enough to catch the full detail - but he strongly advised that there were inherent dangers in trying to control the blood pressure at this age/stage of life, and THEN went on to explain that if Okaasan's heart failed - resuscitation involving chest pressure etc was equally risky.
Basically, he was telling us to face up to the realities of an over 90 year old whose body organs are beginning to weaken. We understood and accepted. It's the truth. Brutal, but true. And she wouldn't want any different.
So the blood pressure meds will stop. And we'll all hope her condition will stabilize.
The head nurse was equally realistic about Okaasan's clothing: don't need it now. Can take it all home. Unless she makes a great improvement and can move to a wheelchair and physical therapy room - from now her therapy will be bedside in her pajamas. We guessed so.
Visiting rights in Covid times? The hospital has, of course, a reservation system. For once a month family visits. But AMAZINGLY - they have the option of an online visit via iPad!! First time we've been offered that. Not that it's any use for us, as Okaasan can't talk and may not understand our faces on a small screen.
But we can make up a small photo album so that staff can show her photos and talk about it.
Best of all: the head nurse actually asked us about Okaasan as a person. What job did she used to do? What are her hobbies? So refreshing! This isn't just a medical case to be processed thru the system. This is a human being who can't communicate much, but she has a whole life of experiences/likes.
So we told her: book keeper a long time ago, super housewife, great cook, flower arrangement, Hawaiian dance, travel, funny...
We left out the part about a healthy distrust of doctors and nurses. ;- )๐
And our next meeting.....the admin staff checked the calendar and came back all apologetic.
We can next meet Okaasan on February 2. Next year. 7 weeks from now!!!
Thanks Covid.
I'm a dementia specialist in the UK, if you'd like to have a chat about Dementia care let me know and I can give you my email.
ReplyDeleteHi Maddie - thank you for your comment. Sorry, I didn't get onto this blog for ages. That's a kind offer, although i'm not quite sure how much you could help...we've been living with this now for over 10 years and i've done a lot of reading and talking to people. This is not my mother, so I have less decision making power about what happens in her care.....but thankyou for the offer :-)
DeleteAhh it's ok, I hope you had a more relaxing holiday season. I was meaning in the UK, I only know of Japans' dementia care through yourself, and I find the similarities and differences very interesting.
DeleteMy partner went to an international religious conference a couple of years ago on end-of-life care, at which a British doctor said they don't use parenteral feeding for dementia patients in this country because it doesn't significantly extend their lifespans. At the time I looked up the studies from Japan, which clearly show that it does extend them by months or years, and wondered if the reason that the doctor at the conference gave is actually a pretext for British hospitals not to use this method of extending life because it's so dehumanizing.
ReplyDeleteHi. Interesting. I think the Japan system helps the doctors stay away from the difficult end-of-life care discussions with families. Even with pets - many vets will not discuss end of life, and pet owners go on and on and on with (expensive) life extending care....I think this will extend Okaasan's life easily for another year or two...and if only we can get IN to the hspotal regularly to see her it would be better quality time. To hear and see her son/me would make her so happy. But...COVID....
DeleteThese are the NICE guidelines in the UK: https://www.nice.org.uk/guidance/ng97/resources/enteral-tube-feeding-for-people-living-with-severe-dementia-patient-decision-aid-pdf-4852697007
ReplyDeleteThankyou!
DeleteOkaasan has 3 tubes, I think.
Nose tube is for medicine?
Arm tube is for food?
Urinary tube for waste matter.
WE have said "no" to the stomach tube. They also tried the chest/neck area port tube - but there was infection, so they stopped.