καλη χρονια!!

Σε ευχαριστούμε πάρα πολύ Ήλια, για την πανέμορφη ζωγραφιά. Καλή Χρονιά και σε σένα και σε όλο τον κόσμο!

31 December

it was a lovely lasagne, cheers Henk..

This morning I went to walk the dog for one full hour as Daphne got up early to go and be with Panormitis. My brother Henk is doing the cooking for us today and brings it to the hospice. So I really have a relaxed day. Yesterday while we were just setting the table in "our" room,  Freek and his wife walked in and had a glass of wine with us. We always enjoy being together for diner, and here they give us all the privacy we need to do so. I put the sign " do not disturb" on the door and we feel "home". All the staff respect this sign and whenever we need anything they come and bring it to us. Sometimes I feel we are at a restaurant/hotel, they take excellent care for their residents and family. Today you find "oliebollen"  ( a traditional sort of doughnut or "tiganites" that we have on New Years Eve )on the table in the livingroom for who ever feels like eating. Outside the "early birds" are trying out some of their fireworks, a big thing in the Netherlands ( unfortunatly!) and our dog is upset all the time.

From next to the bed of Panormitis I wish you all a wonderful New Years Eve and when you open your champagne tonight, then drink on life!!!!!

this morning in the forest

Yesterday coffee time in the hospice with some of the staff and on the left our friend Mr.Jules Frankenmolen

29 December

Dear all,

These days we are all spending close to Panormitis. That is the reason why I did not give any news as I do not open the laptop at all. He is keeping strong, still has apetite to eat and drinks well. He can not walk anymore as he is very unstable and sometimes dizzy. He talked quite a lot these days and is quite vivid. Vasillis came to spend a few hours with him today, so he had a huge smile on his face as he walked in the room.

When something changes I will inform you here on the blog

For all of you Happy Holidays and our best wishes for a New Year in health and prosperity.

hugs,
Panormitis, Daphne, Sophia and Hetty
xxxx

A quiet day....

at the park this morning

Today Daphne and me went to see Panormitis in the morning and at the same time my oldest sister Astrid and her husband Bert came to visit. Ofcourse I took the opportunity to take him out for a walk in the park and my brother in law was pushing him. ( good for me!). There was no sun but the weather was very mild. When we came back he eat and after he was ready for bed ( and so were Daphne and me ) I sat in the relax chair and Daphne sat next to her father and fell asleep. He seemed very pleased today and content, he even spoke a bit and smiled a lot.

Tonight is the first night in weeks that we are not with him for dinner as our dear friend Josseline offered to dine with him so we could stay home. We just finished diner and are thinking to go out for a drink or ice skating in the neighborhood here. Just to break through the daily routine. It feels strange though and I might go to say goodnight to him in a little while. We will see.......

Xmas trees selling everywhere.....

Taken from the relax chair while I was half asleep as well......

a better day...

... and I am sure it was because Daphne was with me. Yesterday I spend most of the day alone with Panormitis and I found out that this is too demanding for one person. It is difficult to sit in opposite of the person you love trying very hard to challenge him to show any emotion. Nice memories, funny stories, making jokes...... so sad, that he can not express himself anymore. Not for him, but for the ones close to him. He does not seem to have any insight in all of this, he is in a sort of state like some one who gets "high", pleasantly "drugged" . But it is so damned hard to  agree on this fact and we can not just "let him be". Today one of the nurses told us that in fact he is not here anymore, but his body still is. It is the mind/brain in the end that makes and breaks us.

We also do realize that we must be thankful for his gentleness, his kisses. For the same matter we could have had a person getting very agressive because the location of the tumor can cause a"frontal syndrome", which makes them very unpredictable and agressive. This, plus that he is not suffering from any pain is something that comforts us.


We did not go outside as the weather was lousy all day and besides he was very tired. We all had moussaka tonight for dinner and a wonderful cake my brother brought for dessert. As much as we avoided sugar in this last one and a half year, we leave him to enjoy all these "goodies" again.

Thanks for all of your kind words through email and fb, these really encourages us ......

Wednesday 21 December

It seems difficult to start the day this morning. Maybe because it rains, it is dark and cold. A reflection of my soul at this moment.

Well, off we go Daphne and me. We will maybe see an old Greek movie with him today.

The weekend before Christmas....

One of the seldom smiles he shares, mostly with his daughters Daphne and Sophia...

A simple scenery... but watching these ducks having a bath in the park being with Panormitis becomes so valuable!

This Saturday it was sunny and we went to the park together for at least one and a half hour. I thought it would be nice for him to take him out of the wheelchair and walk a bit up and down the path but how I was mistaken!! He has more and more difficulties walking and his balance is not good anymore, something that is not easy to handle on my own as he is not exactly a light person.
Anyhow, it all ended good as I could push him back into the chair and got his attention to something else.

He is changing fast now and gets more and more inside his own world, talking less and less. Is disorientated and start doing "strange" things like putting objects in his mouth etc.

Who ever wants to send him a card can check out the adress I putted down a few days ago, he loves getting mail!!!

Wish I could give you all better news ....


Filia for today

thanks God he smiles at me too.....

some more images...

Found out( finally) how to make pictures by "returning the screen", ha, ha...

This was a few days ago in the garden of the hospice, can you imagine having lunch outside in Holland in December?? (okay admitted Yorgos, no Greek temperatures ofcourse!!)

15 December and Daphne is coming....

....she phoned ten minutes ago and nobody can imagine how happy Panormitis, Sophia and me are.



Things are pretty much the same at the hospice. He gets more tired and talks less and less, slips into his "own world" quite often.  Yesterday we had some friends coming, Francien,  Charles and my sister Sylvia. We walked for an hour with Panormitis and once "home" it started to rain. As much as I can we go outside, even if it is for just 20 minutes. He reacts mostly on nature, wants to touch plants, flowers, trees. So that is where we go, to the park.

Here some photo's while Yorgos was still here, it was good to have him here for a few more days, not only for Panormitis but also for Sophia and me. It is a pity that Daphne did not see her "nonos", ti na kanoume?? Here some more photo's:

Yorgos, the park is just around the corner, no more pushing through the grass!!!

Kali efdomada...

from Agios Nicolaos at Rotterdam.

A nice morning out..

Our own "Greek corner" including Greek music..

 

 

 

 

 

This morning when we arrived I suggested to take Panormitis to the sea, since I had a car ( thanks Elga!). But after I discussed it with the nurse we did not go that far, but went for a walk nearby instead. It was very funny especially watching Theologos who was very cold, while I was repeating time after time that we were lucky since it was such a beautiful day, with sunshine and without rain!!

Yorgos was driving Panormitis through this old street from one side to the other side as he wanted to touch all the Xmas trees with his hands. After we had a drink to warm ourselves up a bit and brought Panormitis to bed. It did him very good to be out with his nephews who cared for him with so much love and affection. It really touched me to see them like this together, they are very close. Thanks guys for today, it was wonderful.

09 December

Na to....... ...

Visitors from close and from far......

This is Frederike, who pleased him with a wonderful foot massage ( and after me ) thank you my dear, it was nice and relaxing!!!

After his massage I had to go home as they were going to collect the hospital bed from our apartment. Frederike brought me by car and decided to stay to give me a massage in her chair. I was so blocked and really felt nicer after her massage. Thanks Frederike!!!

Around 17.30 I picked up our koumbaros Giorgos and nephew Theologos. As soon as they entered the dining room where Panormitis and Sophia were having diner, he showed a big smile and mentioned their names correct. Sophia, Daphne and me are also very thankful to see them here and I am sure it does him good to have some "bloodrelation" next to him. They started to talk about "old fun histories and stories" they had together and I could really see Panormitis reacting on this with a lot of good emotions. Thank you.... you gave me back a bit of my husband like this!



Who ever would like to send him a postcard or just some nice words can send it to:


Panormitis 
Hospice Het Vliethuys
Fonteynenburghlaan 7
2275 CX Voorburg
The Netherlands

Who visited today..??

Rebecca (  au-pair for our children,  a long time ago ) and her mother Hennie

When I arrived in the morning we had our breakfast and the nurse told me he had slept quietly through the night. Outside it was cold and windy but still I thought it would be nice just to walk (even for 10 minutes). Soon I was to find out that Panormitis lost a lot of his balance is not very stable anymore, so walking was out of the question. But we took a wheelchair and as soon as we left the house, guess what ....?? The sun came out!!! So we even felt the warmth of the sunlight on our faces for a bit.... he loved it!!! While walking Josseline phoned and asked if she could come by to see us. I said no, but she still came (joke). I told Panormitis she was coming but he did not seem to remember her name when I mentioned it. But as soon as she walked in our room he was just one big smile and kissing, kissing, kissing and kissing her. ( no pictures , some are just to private," ahum" ) A lot of kisses come over us these days, I tell you! Aren't we lucky??? She brought a very tasty Indonesian lunch for us and after we all had that, Panormitis went back to sleep for more then 2 hours. When I was also ready to fall asleep, these two nice ladies ( see picture) came by, which was a very pleasant surprise. Panormitis seemed to remember them as well, don't you agree Rebecca and Hennie?  Throught this blog I also want to wish Hennie a successful operation ( she is donating one of her kidneys today ) and a quick recovery!!! Thanks for coming by... lots of love
 

messages through facebook.....

November 29th

Hey, Just read your blog and just wished I could do something else than sitting in front of my computer crying supidly. We are working with decisions like the one your daughters and yourself made quite often but it is only theory for us here at university. I do admire from the bottom of my hart the strenght and the love your daugters and you practise (and I mean the word as it is, this is real practice of love) every day for Panormitis. And I am happy that you have friends, brothers and obviously good medical staff to help you, Panormitis and the young ladies through this. Hugs and prayers from us. Eva



December 6th

Hello, just read the blog and thinking of you girls and of course also of Panormitis. In our area we have a hospice like the one you describe, it is called Chrisalis and it is the stage a catapilar has before it becomes a butterfly. May Panormitis have a peaceful rode toward his next stage and may this peace give you strenght. Hugs. Eva, Theo and Andreas

trouble

Today we raised together with the sun in the morning and we were carried high up in the sky, together with the clouds. It was a bit cold, but soon the warm light rays from the sun shining on our backs created some warmth. We sat and watched the world from above, slowly waking up. After a while, everything was alive. It all looked quite messy. People were rushing, children were crying, politicians were arguing. It looked as if all trouble was grown together to make a big chaos. So we took some soap and a sponge. The soap had a very light but delicate odor.. We cleaned everything up with the sponge and the soap. When we were done cleaning, we took a closer look at the world once again. The only thing visible were some pieces of land in the sea. Though everything was calm and flowing nicely, something was wrong. It was too empty. So we tried to make the world a bit more lively again by adding some people, some buildings, some villages.. But no, it was nothing like the real world. We suddenly realized that there could be no perfect world, that trouble is part of it, part of everyone's life.
So we undid the cleaning, the "changes for the better", which truly were nothing more than an attempt to make the impossible possible, which of course is... impossible.
Sophia

In the hospice.

Two very kind and sweet people Yannis and Esther who we met at the Delft market in his very tasty "Elia" stand . This picture is taken in the common room of the hospice

this one is taken in Panormitis own private room

Sophia, Panormitis and me left our appartment at 10.30 this morning and we just got back now 22.00. He was very calm, slept well in the afternoon, ate and seems to be happy with the food and excellent service they give here. Sophia danced with him on jazz music and made his first day an enjoyable day, with quite some moments of happy smiles and a lot of kisses and hugs.  Daphne called in several times and feels very, very close to us, even when not near, due to the fact that she is trying so hard to do her best on the UWC, we can certainly feel her presence!!We mention her name from time to time and also this  makes him smile.  What else can a father and mother wish for in this situation? 
Although the epileptic attack had made a small change on him, he is more calm and speaking less, he does remember his daughters, my brother,  and me ( thanks God)!

Are there any people out there having trouble to post on this blog??? Let me know by mail or sms..
kalinichta for now.

Monday 5 December

These pictures are like a  reflection of my feelings today...

the leaves blown away from the trees, but...... the soil is fertile!!

Last night around 01.30 the night nurse Lies woke me up and told me to dial 112 as Panormitis was having an epileptic attack. My knees were shaking, I felt I was going to loose the world around me, memories came back from that first attack, on April 6th 2010 in Patmos.

Within 10 minutes the ambulance was here with the doctors and stabilized him. We decided to leave him with us home as in the hospital there is not much they can do anymore. He would just be troubled by their "protocol" and check ups. Immediately I was offered 24 hours home care, meaning a nurse will be around all day and night long.

After a long thought, we came to the conclusion that it would be better to take him into a hospice ( a place where he will have his own room, surrounded with small furniture, photographs and paintings from our house) we can stay overnight if we wish, stay for food, take him out for a break, feel free to do what we want. There he will have full care of a team of nurses who have a lot of experience with brain cancer and terminal patients.

After we visited the place I went home and when Panormitis was asleep I needed to "empty my head" with so many thoughts. That is when I saw the trees and felt that like me, maybe the trees also emptied their "heads "by shaking off all their leaves. And I noticed the grassy ground, which means that the "basic" is good, strong. It was right there, on that very moment, I felt we are making the right decision.

Please I ask you all very kindly not to phone these days, you can react on this blog or send me an email. I need to regain my energy as I will need all my strength to help us three through this difficult period.

Lots of filia we send out to all of you, our dearest families and friends....

Sunday 4 December...

This was at Hoek van Holland, Freek wanted to show them our harbour with the ferries going to England, it was very nice but....very cold and windy! After we dropped Vasillis at the train station,  as he returned to Luxembourg.

Saturday 3 december a mini visitor........... and her mom

this was Saturday afternoon my niece Chantal and her cute daughter Lois came to see us and as you can see she loves the piano!

And playing the "Tibetan bowl" with Panormiti, she is a real musician!!

Friday 02 December... Vasillis is back again!

this was yesterday, Vasillis came and cooked "bami" with Josseline

Things are pretty much the same, no changes. The only change is that we are probably getting used to the new situation and we all get a proper night sleep. We are very happy that his brother is here, it gives a good feeling.

Sophia is waiting to go to the "All American Today" store, so off we go in the rain....... (sight)
Actually I should leave the "sight" because it is wonderful to go down town and feel a bit of the outside world for a few hours. I look forwards to walk around and see people, have a nice coffee somewhere. It has been a while.........