Here we are!

 

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. ;- )👀

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.

A choice of...one

 Okasan's next move in the works - to a long term care hospital near us.

Social services sent the info about our options. Option.

There were 3 options for the suitable facility in our requested area. But two of them can't take an elderly person with fluctuating blood pressure. So, we got the small brochure for the third offering.

I thought MOST old people have fluctuating blood pressure? Is that really a reason to refuse a potential customer?

Anyway, Dear Son looked at the brochure, which has a stock image photo and general info arranged in colorful boxes. Could be any care hospital anywhere in Japan. We are not allowed to visit because of COVID. And anyway - as Okaasan's life is now a bed and tubes...does it really matter what lovely facilities are elsewhere in the building?

Sorry. My bitterness is showing.

It of course matters very much that the people coming to her bedside are kind and caring, professional and humane. It matters that they have a proactive policy in allowing family visits during a pandemic.

We can only hope. Dear Son is talking to the social worker and the move is in motion.

Planning my death

 Really I have thought a lot since we saw Okaasan last week.

I hope that the place she goes to next is a better environment, where she has the chance to be a human - not a vessel for tubes In/Out. And if the Pandemic will allow us more time with her. Dear Son won't do more to push the medical experts and social worker in any other direction. He is very passive on this topic.

But I know I need to actively protect MY future.

Maybe he will be the decision maker at the end of my life. Maybe I will be doing it for him. Maybe other people. But it's something I want to think about now and plan.

I found the Japan Society For Dying With Dignity and I've sent away for the membership pack. Then I can talk to Dear Son. Maybe he would like to join me in making a Living Will?

If this is a topic that interests you, here are some links:

Japan Society For Dying With Dignity

World Federation - Right to Die Societies

Time to move on

 Okaasan can move to her next "home". Maybe her last "home".

The hospital called us in last week for a doctor chat. Sitting at a small desk, with the plastic screens between us and the Doc as he showed us data on his computer - Okaasan's heart rate and other vital signs. Basically, all good.

So, as this hospital nears the end of the period in which they can claim national insurance money, it prepares to let her go and allow another institution a chance at the Money Pot.

Sorry to be so cynical. I am sure the Doc and the nurses, social workers etc are all nice people. Just doing the job in a system of elderly care. And we family members play our part. Are we doing what's right? What Okaasan would really want? I doubt it. Really, I do.

After the Doc meeting we had a brief chat to the social worker, confirming the areas of the city we would prefer for the elderly care hospital that Okaasan can be moved to soon.

Then we got dressed up like this to visit Okaasan's bedside for 10 mins. She smiled, cried a little. Did the head bobbing motion and opened and closed her mouth a few times. Her hands were muffled up in gloves to stop her removing the tube into her nose "medicine?", and the other into her arm for "food"...and the other removing her "waste". She was on a bed, on her back with bed rails and a spot of sunshine from the window. Pink curtains.

Is that good? I don't think she would think so. 

I don't think so. If this was my life. I would not choose this existence. The mercy is that she probably doesn't sense time at all. Just the now of the pink curtain, the  face of a nurse, the sunshine, the dark. Discomfort when she swallows spit.

She doesn't have TV/magazines/food. And with this blasted Pandemic - she doesn't have family visits and the jogging of memories and that happiness. Will her quality of life improve in the next facility? Will she have a TV within view? Will she have interaction with more people? Activities? I so hope so. Because I don't like the so-called life she has now.

I just read a book called "Changing the Way We Die", by Fran Smith. It's about the hospice system in America - the history of the movement, the finances, the people involved. Made me think a lot about these end of life choices.

Don't know what the answer is.