The Long Road (Wonderland II)

♫ Gee but it's great to be back home,
Home is where I want to be.
I've been on the road so long my friend,
And if you came along
I know you couldn't disagree. ♫
---
♫ And I'm sooo tired,
I'm oh oh oh so tired… ♫
---
Paul Simon, Keep the Customer Satisfied

There really is a Paul Simon quote for every occasion.
Well, at least if you twist it just a little bit out of context ;) …

---

No, this is not where I live. And I’m grateful.

I decided to take a walk through this residential area after having been to visit my dad in the short-stay nursing home where he has now spent a month. (A month?!) (The nursing home is not quite in this area either, but close to it.)

It was probably almost 20 years since I last walked this way. Back then, I had friends living there. I realized as I walked there now that I had forgotten quite how large that whole suburb part of town really is. And how much everything looks alike. (From the main road passing by one really does not see half of it.)

 
Suburb watercolour painting by Lars Lerin

The long walk, however, is not really why I felt “oh oh oh so tired” when I got back. (I did not walk the whole way home, I took the bus part of the way.)

The reason I was at the nursing home was a meeting with a lot of people to discuss the future living arrangements for my dad. The lot of people included at least three from the nursing home + the municipality assistance evaluator + district nurse + me + dad.

All very nice people, I’m sure, but considering that dad sort of lives in his own Wonderland these days (i.e. a place where normal rules do not quite apply) I was not sure how he might react to the idea of not returning home to live but being sent somewhere else.

I’m still not sure. He did not protest but I’m also not really sure how much of it he took in.

The result of the meeting was that he will remain at the short-stay place for another month. In September there will hopefully be a place at a nursing home unit for elderly people with dementia in the village where he grew up and then also lived the past 18 years.

There is one Crux though. For mysterious reasons there still seems to be a lack of formal “evidence” that he in fact suffers from dementia. (Without which he cannot be offered a place at that unit.) Even though everyone in that room knew it to be so, they said there was no official record of where the diagnosis came from. (Although I do know where it comes from, and I’ve told a lot of people that along the way.)

It also seems no one during all this time has thought of doing a certain test that is commonly used to prove it (MMSE = mini mental state examination – I know the gist of it since the years I worked as a medical secretary). Apparently this test has to be done by a specialist nurse to be valid. And the specialist nurse is (of course) on vacation just now. So they’ll try to find another specialist nurse to do it as soon as possible.

 

In the meantime, while the evaluator asked dad questions like if he himself thought that he would be able to go back home to live – and dad answered that he’d like to think that he could… (actually with sort of a glimpse of his old self shining through in a bit of irony) … I decided to instead ask him (in the presence of the whole lot of people) if he could tell them where exactly it was that he had been living before he had to go into the hospital five weeks ago? He could not. He named a completely different village where he has never lived. (And he does not remember the going into hospital part either.)

It really is “oh oh oh” so difficult to try and understand which paths he’s walking in his mind.

Earlier, before the whole lot of people arrived, he asked me if I had any contact with --- these days. A name I did not recognize at all. When I did not understand, he added: “You know. Your mum.” (The name he mentioned started with the same initial as mum’s, but that’s all.) And then, with sudden hesitation: “Or is she still alive…”

And I had to tell him again, that no… So sorry, but mum died last year. Also tried to remind him of the fact that it was he himself who used his security alarm to call for help when she had a stroke one evening at home, but that she died shortly after arriving in hospital. I guess to him… having a very fuzzy memory indeed now of the past few years… it must seem that she just sort of disappeared… Perhaps gradually. Like the Chesire cat.

That, and more, is why I felt ”sooo tired - oh oh oh so tired” - when I got back home to my own home (which luckily does not feel as gloomy to me as that residential area in pictures above).

Before I allowed myself to lie down and rest, though, I decided to dig through a pile of papers in search of one I knew must be there, somewhere... I found it. The Evidence. A copy of dad’s release form from two weeks evaluation at the Neurology ward two years ago. It clearly states one of his diagnoses back then to be beginning vascular dementia. (What was beginning then, has grown since.) I phoned the district nurse, and I’m sending her a copy of it.

♦ ♣ ♥ ♠

"What do you know about this business?" the King said to Alice.

"Nothing," said Alice.

"Nothing whatever?" persisted the King.

"Nothing whatever," said Alice.

"That's very important," the King said, turning to the jury. They were just beginning to write this down on their slates, when the White Rabbit interrupted: "Unimportant, your Majesty means, of course," he said in a very respectful tone, but frowning and making faces at him as he spoke.

"Unimportant, of course, I meant," the King hastily said, and went on to himself in an undertone, "important -- unimportant -- important -- -" as if he were trying which word sounded best.

Some of the jury wrote it down "important," and some "unimportant." Alice could see this, as she was near enough to look over their slates; "but doesn't matter a bit," she thought to herself.

At this moment the King, who had been for some time busily writing in his note-book, called out "Silence!" and read out from his book, "Rule Forty-two. All persons more than a mile high to leave the court."

Everybody looked at Alice.

Alice in Wonderland Ch 12 – Alice's Evidence

Behind The Iron(y)

 

It all depends on how you look at it, really…

If you’re wondering, dear reader, what on earth inspired this post, the answer lies in a challenge.

---

A Hazy Shade of Winter – listen to it at YouTube

Time, time, time, see what's become of me
While I looked around
For my possibilities
I was so hard to please
But look around, leaves are brown
And the sky is a hazy shade of winter

Hear the salvation army band
Down by the riverside, it's bound to be a better ride
Than what you've got planned
Carry your cup in your hand
And look around, leaves are brown now
And the sky is a hazy shade of winter

Hang on to your hopes, my friend
That's an easy thing to say, but if your hope should pass away
It's simply pretend
That you can build them again
Look around, the grass is high
The fields are ripe, it's the springtime of my life

Ahhh, seasons change with the scenery
Weaving time in a tapestry
Won't you stop and remember me
At any convenient time
Funny how my memory slips while looking over manuscripts
Of unpublished rhyme
Drinking my vodka and lime

Look around, leaves are brown now
And the sky is a hazy shade of winter
Look around, leaves are brown
There's a patch of snow on the ground...

Murphy At Work Again

Remember the house where Murphy's Law rules?
I.e. where my Dad lives.

In December, we had problems with

1/ plumbing, resulting in a flooded cellar (main problem fixed)
2/ a muddy yard (temporarily solved by snow and ice,
but no doubt the problem will resurface when it begins to thaw!)
3/ a broken refrigerator (replaced)
4/ the lock in the front door (fixed)
5/ the heating system (fixed)

Last week it was the clothes washer's turn. Lucky for me, home care seem to have decided that when it comes to technical things, it's better to call my brother, although he lives farther away. (They're right.) He has now ordered a new one, and a tumble dryer as well (there wasn't one before). Yes, luckily there is money enough to pay for it. Mum just never wanted one.



This is NOT The House, but a completely different building,
probably abandoned even by Murphy. His work there
seems to be done.

Are You At Home?

My grandparents around 1930, taking possession of the
piece of land where they were to build their house.

In 1930, my paternal grandparents got married and built a house.
A year later, my father was born.

Back in those days, so I'm told, the little house was divided into two small flats. 1 room and kitchen downstairs, 1 room and kitchen upstairs. In Dad's early childhood, they shared the house with his grandmother and an aunt and her husband living upstairs.

When my Dad got married to my Mum, the two of them moved away to another town.

My Grandpa died in the mid 1960s of Parkinson's disease (at the age of 65). My Grandma stayed on for a number of years alone in the house. Her brother-in-law, widower before her, lived a couple of houses down the road. Grandma cooked dinner for the both of them, every day, until towards the end of his days, he had to move to an old people's home for a short while. (His house, as I recall, still in the mid/late 70s had no modern facilities like indoors toilet or central heating.)

The last few years of her own life, Grandma by her own choice moved to the old people's home. Today she would not have been considered in enough need of help to be allowed that. There are no old people's homes of quite that kind any more; only nursing homes for people who really need around-the-clock care.

We kept the house as summer cottage. For many years, both before and after Grandma passed out of time, Mum and Dad drove back and forth every other weekend and tended two houses and two large gardens.

When Dad retired from work, they decided to sell their own house and have a modern extension built onto Dad's childhood home and move back to that neigbourhood; which I have always considered a good move on their part, from all points of view. They had around 16 good years there together.

A couple of years ago, Dad's health deteriorated rather quickly from "growing old" to more obvious problems. Much the same thing happened to Mum; and then in May 2009, she died rather suddenly of a major stroke. Dad, already having a mix of physical problems (difficulties walking) and cognitive ones, also had the shock of losing his wife added to that.

As I said, the "standard solution" to old people's problems in our society is no longer to move them away from their own home. Dad also always said, and still says, that he wants to stay on there. So home care support was organized, and on the whole I think they are doing a good job. He gets help several times a day and they also look in during the night. Of course it gets lonely in between, but we all doubt he would really be better off living among even more confused strangers in a nursing home.

For one problem, however, there seems to be no solution. After Mum died, Dad got it into his head that he was, at least for a period of time, staying in some kind of nursing home. The idea comes and goes, and the geographical spot for this place has also moved around a bit (in his mind). In the summer, it was quite far off - 200 km or so. More recently, the distance has shrunk. Lately he has instead named a place only about 20 km away from the Real House (which he has in fact never left except for a few hours now and then, since mum's death). My guess is that the closer location has been "invented" by his brain to allow him to simultaneously more-or-less grasp the fact that he is still seeing people from the village where the Real House is situated.

For a while back in the autumn, Dad even said he had moved back Home; and we kind of drew a sigh of relief. Lately however, it seems he has "moved out" again. It breaks my heart and makes me dizzy at the same time, talking to him on the phone. At worst, back in the summer, he tried to call taxi service to go from his own address to his own address. He also puts real effort into explaining: Yes, it is the same house, but it is not "geographically" the same. (It beats me why he thinks that. I haven't got a clue why he thinks of any of those two places he has been naming. He never lived in either of them.) Or he names them House 1 and House 2, or North and South, or whatever. He also often says (with some wonder in his voice) that they look exactly identical; he is just not in the right one.

The simple truth is, of course, that the house is just not the same without Mum. And there is really nothing we can do to change that...

Now it has really been too long since either my brother or I visited. It is hard for me to get there on my own; this time of year especially. My brother was supposed to come this weekend, but called yesterday to say that unfortunately he has to postpone the trip again, because he has not been well either. (He lives 300 km away.)

Talking to Dad on the phone, first yesterday and then again today, trying to explain this extra complication, meant another very confusing discussion of who is (or was, or won't be) going to visit whom and when. Dad suggested, among other things, that he wanted my brother to "pick him up" and "bring him along" - that is, to the house where he in fact already is, and has been all the time (while he rather seemed to think this time that it was where I was). And then there is of course "the kitchen staff" who need to be notified...

(In Reality, "the kitchen staff" - Dad's words! - don't really need a whole lot of notification in advance; because when we do come to visit, we bring our own food, and the home carers have to come on their regular visits anyway, to help  with his medication and such.)

If you've been reading my blog this past week, you know that I've been (re)reading Winnie-the-Pooh. The tiddely-pom song, as well as the pictures of Eeyore under a cover of snow, are both from the chapter about The House at Pooh's Corner; in which Pooh and Piglet want to build a house for Eeyore. It is just that for building material, they happen to use a house that Eeyore already built for himself (Pooh and Piglet not recognizing it as such, but taking it to be just a pile of sticks). When the truth dawns upon them, there is some awkward explaining to do...

'It is like this,' said Piglet quickly... 'Only warmer,' he added after deep thought.
'What's warmer?'
'The other side of the wood, where Eeyore's house is.'
'My house?' said Eeyore. 'My house was here.'
'No,' said Piglet firmly. 'The other side of the wood.'
'Because of being warmer,' said Pooh.
'But I ought to know - '
'Come and look,' said Piglet simply, and he led the way.
'There wouldn't be two houses,' said Pooh. 'Not so close together.'
They came round the corner, and there was Eeyore's house, looking as comfy as anything.
'There you are,' said Piglet.
'Inside as well as outside,' said Pooh proudly.
Eeyore went inside... and came out again.
'It's a remarkable thing,' he said. 'It is my house, and I built it where I said I did, so the wind must have blown it here. And the wind blew it right over the wood, and blew it down here, and here it is as good as ever. In fact, better in places.'

I wish Dad would be as easily convinced...

Advent Candles

Tomorrow is the first of the four Advent Sundays leading up to Christmas. So this weekend we light the first of the four candles in the special advent candle holder. These too come in different shapes. In Sweden though, all four candles are traditionally placed in a row; while in some other countries, like Germany, I know that the typical advent candle holder is instead in the shape of a wreath.

The one above is mine, a rather modern one, bought only a few years ago. I took the picture yesterday evening in my living room. I'm afraid it turned out a bit blurry, but never mind. 

The advent candle holder below is an older and more traditional one that my parents always used. This kind is shaped like a box, with a handle on each side, and traditionally you fill it with white moss, and some other decorations on top of that if you wish.



Filling a candle holder with moss etc is a bit of a fire hazard though, and that is why I in later years have abandoned that tradition. (Although of course the shops nowadays sell specially prepared moss that is not supposed to burn; but then it is drenched with chemicals instead.)  As you can see in the first picture I have some decorations on my holder too, but as the candles burn lower, I remove those.

As you light the first candle the first week, then the second the next week, then the third, then the fourth... When you get to the 4th Sunday, the candles will be in the shape of a "stair", the first candle by then very short and the last one still high. You don't really see that in the picture of my parents' candle holder, because after the 4th Sunday, they used to make a fuss of getting the candles even again. Which means, of course, blowing out the first one, until the next one has got down to the same size as that one, and then blow out the second one and wait for the third etc... I never understood why they bothered, and I never do that. One thing I can't stand however is if the first candle is burned down, and someone just puts in a new tall one in its place. Looks all wrong to me! At first chance, I'd be there to rearrange them! - LOL - We all have our own hang-ups!

Tomorrow, my brother and I will try and see if we can find the "advent stuff" in some closet in dad's house and arrange a bit of time-of-the-year atmosphere there, too. This used to be mum's job, so it will no doubt be a strange feeling...