Re: Hi from Norway, with short introduction.

March 3, 2005

Hei Nils,

Jeg er Bestefar Dann. Jeg er 53 aar gammel. :-)

One survival trait for a Caregiver is to learn to nap,

to rest when your loved one rests. Nights are hard

for me because I am afraid that I won't awaken easily

enough. Sometimes when Mom is restless, I just stay up

all night.

A year ago we got several of the wireless remote " door

bell " ringers. Mostly Mom is able to ring the bell

/ buzzer when she needs help, or wants attention.

Sometimes she forgets how to ring the buzzer.

My mother's favorite video is " Cool & Crazy " about

the

Norwegian Men's Choir from Berlevaag, Finnmark,

Norway. Mom has watched the video at least 200

times in the last year, and often seems surprised by

parts that she doesn't remember seeing before. The

music is wonderful, but I think she likes it because

one fellow reminds her of Dad.

It might surprise you to learn that there are towns

in Minnesota that Celebrate a May 17th Festival with

a Parades down main streets Celebrating Norwegian

Independence Day. As I recall this year is the

100th aniversary of Norway getting Independence from

Sweden. For some time away, I went with my 18 yearold

son this past Sunday to visit a college, where I saw

a life size photo of the Norwegian King Harald (

Decorah, Iowa )

The little bit of Norse that I learned living with

Bestemor my First year of college is 35 years rusty.

Depending on the spoken dialect of Norwegian,

sometimes I can understand a bit of what is being said

.. I am a little more fluent in Spanish. I do pretty

well undestanding Australian, but I also understand

some French, Italian, Portugues, and German but more

if there are English Subtitles <grins>.

During World War II, one of the ships that my father

served on was staffed by all Norsky Officers:

Ex-patriots that didn't get trapped by Quisling. Dad

was the American Officer, and he was not fully fluent

in Norse.

Dann

*************

--- Nils R Grotnes wrote:

Hello!

I haven't got too much time tonight (it's 02 am

Norwegian time) as I have to get up around seven to

arrive at the nursing home when my mother wakes up.

<snip>

March 3, 2005

YOU HAVE TO TAKE CARE OF YOURSELF MENTALLY AND PHYSICALLY OR YOU WILL NOT BE

THERE FOR YOUR MOM. I KNOW I PUT MY MOTHER IN AN ASSISTED LIVING FACILITY AND

FELT BAD ABOUT IT BUT SHE NEEDED IT FOR SAFETY AND COMPANIONSHIP AND CARE I

COULD NOT GIVE HER. MY MOTHER IS LOSING HER BALANCE MUCH MORE AND HAVING MORE

TROUBLE WITH TASKS AND MEMORY. SHE IS VERY AWARE OF ALL OF US AND CAN EXPRESS

HER FEELINGS, BUT GETS VERY NERVOUS AND ANXIOUS MUCH MORE OFTEN NOW. GOOD LUCK

AND TAKE CARE, STAY AS HEALTHY AS YOU CAN FOR YOUR MOTHER. CAROL B.

Hi from Norway, with short introduction.

Hello!

I haven't got too much time tonight (it's 02 am Norwegian time) as I

have to get up around seven to arrive at the nursing home when my

mother wakes up.

At 40 I'm the oldest son of six, while my mother will be 72 in May.

The first symptoms started (in hindsight) at least as early as when

she was 66, two years later I moved in to help her, and it was over a

year later that she was diagnosed with LBD.

She has declined dramatically since then, and now she can only walk

for short distances with full support. She's quite alert mentally yet,

though I fear what will come, reading some of the stories of others.

The nursing home is understaffed and not all the nurses there are very

good, so I stay as a personal helper for as long as I can. Until

recently that was until 10:30 pm, but recently I have had to leave

around 7 pm, to not collapse physically and mentally.

That will have to do for now. Being positive is possibly my most

important contribution these days, so I need the sleep. :-)

Nils

Welcome to LBDcaregivers.

March 4, 2005

Hi Carol.

Thanks for your advice, I know you're right about this.

Nils

March 4, 2005

> Hei Nils,

> Jeg er Bestefar Dann. Jeg er 53 aar gammel. :-)

Hei Dann, Du skriver godt paa norsk!

> One survival trait for a Caregiver is to learn to nap,

> to rest when your loved one rests. Nights are hard

> for me because I am afraid that I won't awaken easily

> enough. Sometimes when Mom is restless, I just stay up

> all night.

Yes. That was what finally ruined it for us. I promised her I would do

all I could to keep her out of a home, but when she started waking up

at all hours I just couldn't keep up.

> A year ago we got several of the wireless remote " door

> bell " ringers. Mostly Mom is able to ring the bell

> / buzzer when she needs help, or wants attention.

> Sometimes she forgets how to ring the buzzer.

I usually slept like (I think) a mother with babies does. I'd often

wake up standing in the middle of the bedroom, having jumped out

because of some small sound from the next bedroom even before I

realized what I was doing.

> My mother's favorite video is " Cool & Crazy " about

> the Norwegian Men's Choir from Berlevaag, Finnmark,

> Norway. Mom has watched the video at least 200

> times in the last year, and often seems surprised by

> parts that she doesn't remember seeing before. The

> music is wonderful, but I think she likes it because

> one fellow reminds her of Dad.

I think it's great that they can touch people all over the world like

they do. Our family home was in Tromsoe, a little south of Berlevaag,

but still far enough to the north to get to get to know fantastic

people like that. The people in Finnmark were quite special, and many

still are.

> It might surprise you to learn that there are towns

> in Minnesota that Celebrate a May 17th Festival with

> a Parades down main streets Celebrating Norwegian

> Independence Day. As I recall this year is the

> 100th aniversary of Norway getting Independence from

> Sweden. For some time away, I went with my 18 yearold

> son this past Sunday to visit a college, where I saw

> a life size photo of the Norwegian King Harald (

> Decorah, Iowa )

You're right about the anniversity. I have seen some of those

festivities on TV. If I recall correctly, there will be served

" lutefisk " and people will pronounce the expression " uffda " a lot,

because it sounds so funny? :-)

I have relatives in Minnesota, my father visisted them a long time

ago. I wish we had kept in contact.

> The little bit of Norse that I learned living with

> Bestemor my First year of college is 35 years rusty.

> Depending on the spoken dialect of Norwegian,

> sometimes I can understand a bit of what is being said.

I am impressed (and pleased)! There's only around 5 millions of us, so

we can hardly expect to be known that well by the rest of the world.

> During World War II, one of the ships that my father

> served on was staffed by all Norsky Officers:

> Ex-patriots that didn't get trapped by Quisling. Dad

> was the American Officer, and he was not fully fluent

> in Norse.

Norwegians used to be all over the seas, but nowadays we're probably

too expensive. Was your father on a military ship, or was this

civilian sailors? I think some amazing heroics were done by ordinary

sailors sailing on unarmed cargo ships.

In my family, the men was mostly in Norwegian prison camps. My fathers

father was a hostage and almost executed when the Germans couldn't get

rid of some well placed snipers in the valley of Gudbrandsdalen. My

mothers father was arrested for distributing illegal newspapers, but

they couldn't find the proof because his secretary managed to call my

mothers mother before the Gestapo got to the house, and she stuffed

all the papers in my mothers schoolbag and sent her into the town just

as the big black cars arrived. She still remembers how she at seven

years terrified bicycled around all alone, not knowing when it was

safe to come back, before finally returning just as the cars took her

father away. She didn't see him again until after the liberation, but

her heroics probably saved his life. Had he been sent to Germany, he

would have needed a lot of luck to make it. (The Germans had a special

policy called " Nacht und Nebel " (Night and Fog) against Norwegians.

Not as bad as what the Judes had to enjure, but still quite horrifying.)

As you may by now suspect, I've read a lot of history. :-)

Nils

March 4, 2005

Hi all!

I'll answer my own post, so that what I keep adding to the story is

kept together. This is mostly from memory, notes are elsewhere.

> At 40 I'm the oldest son of six, while my mother will be 72 in May.

She gave birth to six kids, which is all the more impressive when you

consider she got started (with me) when she was already 32. She later

separated from my father, but they never got divorced. He lived

elsewhere for a while, then he moved into an apartment on the ground

floor of our house in Tromsoe. He had (and has) his own medical

problems, so doesn't much enter into this story. The rest of my

siblings all lived in Oslo, 1700 kilometers away.

> The first symptoms started (in hindsight) at least as early as when

> she was 66, two years later I moved in to help her, and it was over

> a year later that she was diagnosed with LBD.

Probably it started even earlier, but she is very good at coping. The

first signs she couldn't hide was memory problems. Then she started

getting problems with her driving, and she became very cautious. She

became passive, started sitting in front of the TV all the time and

tended to " fade out " , often closing her eyes, while doing so. But when

I arrived, a year after she had retired, she was still driving and

taking the dog for walks.

We had her regular doctor put her on a waiting list for tests at a

geriatric facility, but that list was over six months long at the

time.

That first summer I planned her vacation, and she traveled by boat,

train and plain all by herself, managing to visit relatives, attend a

wedding of one of her sons, and both a high school and a family

reunion. I stayed at home, taking care of our cats and an elderly dog.

I had to put it down eventually, I think mother was relieved it

happened when she was away. That was the last summer she could travel

alone. She was 69 then.

After the summer, I finally managed to " bully " the geriatric clinic to

call her in, and they did some test. She hated those, and would

practice days in advance trying to do as good as she could. She didn't

want to be diagnosed wrongly because of nervousness, she said. They

suggested some pills we should try. For Parkinson I seem to remember,

but she refused to take them after only a week.

The next spring, we both went on vacation together. At that time, her

back started to bend forward slightly. We had her x-rayed, and the

doctor said there were some calcification that probably was the cause.

We were advised not to force anything, so her walking suffered. Of

course the bending could have been a result of her wanting to be

careful, feeling unsure of her walk, and the calcification a result of

the position. Who knows. Still, we managed to travel quite a lot,

visiting friends and relatives. Her memory worsened, but by that time

we were so well practiced together that it didn't really bother her

visibly. I'd remind here about things whenever she needed it, helping

her out in conversations when she faltered, and so on. We attended her

brothers 75 years celebration, and then we met all the rest of her

kids in Oslo to celebrate her 70 year birthday.

Her condition slowly deteriorated, so I managed to get another

appointment at the geriatric clinic. After more tests, we managed to

get her to try the pills she had refused, but we finished those with

no improvement. The doctor then doubled the dosage, saying he was

surprised they didn't have any effect. I suppose they still thought it

was Parkinson at that time. After that didn't work either, my mother

was so fed up that she refused to try out Aricept. That was probably a

mistake.

It was some time after this, that the geriatric doctor told us he

suspected LBD. As so many others, I had never heard about it before,

so only after looking it up on the internet did I realize this was

_not_ better than Alzheimer, which was what my mother feared the most.

(The fact that it said " For Alzheimer " on the box, was one of the

reasons she refused some of those pills, I think.)

I didn't have much help at this stage, the rest of my siblings were

far away, we saw them only on the occasional vacation. My father

helped mostly by taking care of his own problems himself, though he

drove us when we needed it. (I never had a driving license.) But I

handled it, even though mother now had to be helped into and out of

the bed, and she started to get major problems with constipation. At

first, we tried small amounts of Lactulose and other remedies I don't

recall any more. It didn't work well enough, so we had to use enemas a

lot.

I suspect that mess led to her getting urine infection, which we

didn't recognize at the time. It was partly covered by other behaviors

that we attributed to the mental difficulties. She also became

dehydrated, and all these things made her walk much weaker. This

period I didn't get enough sleep, because the infection would make her

wake up in the night a lot because she had to go to the bathroom.

I was soon desperate, so as I was in daily contact with my siblings in

Oslo, I took an offer (maybe earlier than they had thought), of moving

her to an apartment there. One of my brothers used a week of vacation

to help me pack and and arrange everything.

We had a final meeting with the geriatric doctor, and he was so

surprised by mothers rapid decline that I later learned he had alerted

the doctors in Oslo about the possibility she had Creutzfeldt-Jakob

Syndrome!

After we arrived in Oslo, she had become so weak that she couldn't

keep on her feet when I tried help her on the toilet. We finally got a

doctor to take it seriously enough, and she got sent to hospital. They

let me stay with her, so it wasn't such a bad experience for her I

think.

This seem like a good place to stop for now. I leave soon, and this is

probably too long for one post already. I'll post more tomorrow.

Nils

March 6, 2005

The saga continues, one day late. (I was too tired yesterday to do a

long post.)

Before we left Tromsoe, mother had developed another curious symptom.

Her back no longer just curved forward, but also to one side. This

tended to change over time, first towards the right, then the left and

then the right again. Her muscles in the back was clearly much more

tense on the side she curved towards, sometimes the whole right side,

sometimes just what I think you'd call muscle " knots " . This curving

has continued to come and go to this day, though now always towards

the right. Her right side in general seems weaker, something I thought

was more typical for Parkinson.

Of course she had the hallucinations, thankfully they didn't scare

her. She'd report dogs or cats walking past her door or in her bedroom

occasionally. Of course then we still had two cats and a dog, so it

wasn't at first clear to me this was hallucinations. One clear case

was the night we discussed in detail a young girl she saw through the

window, sitting on a chair (in deep snow). I've always calmly

explained to her that this is part of the LBD, and she seemed content

with that explanation. In fact one blessing is that she almost always

seem rational, something I think may be caused by how she has always

followed her feelings, instead of worrying about logic. She " thinks

with her heart " . Thus the memory loss makes much less of an impact. On

the downside, it also makes it almost impossible to reason with her,

the few times her feelings lead her astray.

In Tromsoe we also had her first known fall, when I was off shopping.

There was some bleeding, which scared me a lot, but she handled it by

herself very well, I found her sitting next to the sink with some

paper tissue, waiting patiently for me. That was the last time I left

her alone.

Just before we left, I finally managed to persuade her to start taking

the Aricept she had refused before. In the beginning this seemed to

have no positive effect.

When we arrived in Oslo this first time, we expected to borrow a nice

apartment for just me an my mother, as promised. That didn't happen,

we had to share it with the brother who rented it. Unfortunately it

was a little too small for that, so though he occasionally was of some

help, this period became a very trying time for all three of us. To

this day, this particular brother of mine avoid us as much as he can.

He has never visited without being asked to do so, and those times, he

stays for as short a time as he can. I realize now, how fast LBD can

tear friends away, and families apart, so I don't really say or do

anything about this.

As I described last time, things went from bad to worse fast, and we

ended up with mother in hospital. There she got intravenous fluids and

antibiotics, and they did several tests and scans. In Tromsoe, when we

first had her tested, they only did a CAT scan. Now they wanted to do

a MRI scan, and that turned out to be an horrible ordeal. By then

mothers curved back and neck made it impossible for her to lay flat on

her back, and for some technical reason she couldn't be allowed a

pillow. Against my protests, they tried to scan her anyway, but of

course the pain made it impossible for her to lay still and the images

was uselessly blurred. They weren't willing to put her under

completely, but the local anesthetic they gave her instead, helped

little if at all. When they made clear they intended to try again, I

put my foot down. That they considered the risks of general anesthesia

too much, combined with my knowledge that LBD doesn't show up on

scans, made me think this wasn't even closely important enough to

" torture " my mother. I felt like a traitor for even letting them do it

the first time. She made it clear all the way through, she didn't

want to do it, but some doctors seem to have some sort of selective

hearing disability... On the other hand, it was nice that they had an

EEG done.

After five days in the hospital, mother was released back to the

apartment. In Norway we have a rather new " general practitioner

scheme " where you have to register with one " personal " doctor. We were

lucky to find a good one fairly soon after we arrived. To get

appointments with specialists, you have to go through this doctor,

just as we did in Tromsoe. This usually works well, except when you

have just moved! Oh well.

With the help of this doctor, we managed to figure out the best

medication for mother, for example he made it clear that we could use

much more Lactulose than we had been told before, and this helped

fantastically. Never after that has she needed enigmas. He also

pointed us to high-energy juices when she lost her appetite

completely, probably caused by the big weight loss during her weakened

period. A few weeks with that, and ordinary food was again enough, she

soon gained some of the lost weight back. Of course on the downside,

what she lost was both body fat and muscle, while the gain was mostly

body fat. The Aricept finally also kicked in, and for a short joyful

period mother actually managed to walk short stretches by herself

again. Unfortunately, a few falls and the (much slowed) general

decline stopped that after a few weeks.

The new doctor had one bad suggestion. Against tremors, especially in

the right hand and leg, he suggested Baclofen. This drug, even though

we started out as carefully as we possibly could, knocked her more or

less straight out. Not only did she fall into a deep coma-like sleep,

she lost control of her bowels. The only time she has done that to

this day.

Apart from this, the doctor was of great help, which cannot be said

about all the bureaucracy we had to endure. The next months were a

constant fight, sending applications, searching for information,

telephoning and emailing, having " home visits " to ascertain she was in

a condition where she would have extra rights, and so on.

But that I will tell more about, next time.

Nils

March 6, 2005

Nils

One day this week mom was unable to hold up her head. It would tilt to the back

and her jaw would drop open. I spent most of my visit holding her head as I

found that if I did that, she was able to talk and I could understand her.

Otherwise it was not good. The very next day I arrived to find her keeled over

forward and to the right. She was unable to relax back against the chair, after

a few moments would just end up flopped over again. That night I found her in a

geri-chair instead of a wheelchair. She has remained in this chair. I wonder if

she might be able to be in a wheelchair some days, but this gives her a recliner

when she is sleepy, so I haven't worried about it. Funny, I never heard of this

symptom before and I have been on this board for 2 and a half years and lo and

behold you tell me that it has happened to your LO.

This is why this board is so important. Thanks for sharing.

Kath

Nils R Grotnes wrote: