CATCH UP ... THEN ON TO PAINT.... OK?

So, it's Tuesday, Overgate Hospice day. 

Since I last wrote, I've been feeling really unwell. Its grief. Real Grief , for my dearest Meggie. real pain... its unimaginable how hard this has hit me. 

One blessing is that she went first and doesn't have to cope with the loss of me.

So today, Overgate Hospice.  Teena very kindly as always, ie when I told her about Meggie. 

Jenny (art volunteer) came along and we talked about brushes.. ( sable, squirrel, synthetic, mixed.. maybe even hedgehog ! ! !  I don't know.. after feeling 20+ brushes,  you sort of loose the will to live! ! ) 

Then we went on to papers.... the same... 

did we paint ?... No...   !!! 

(I don't want to know all the infinitesimal theory... just basic info to have a go at water painting... BUT I don't want to upset Jenny... she is so kindly and well meaning... a challenge for me once again.. 
who comes first ?
.. me and my needs ?
... or politeness ?   (my natural stance) 



A challenge,
 in many situations................ actually.)

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After lunch I saw Rebecca, the palliative care consultant. We talked for well over an hour. She is so kindly. and was an active listener.... I have a booklet to read , think about,           End of Life Care. 

I now understand that I can be sedated at the end.. 

I can say that I don't want to be resuscitated..,  BUT , the law at the moment might mean that I would have to be.. but  as it's now on my record, ie  that I have expressed a wish not be resuscitated, it will have some power... but until I am worse, the the law says I must be ...  though this note will be some protection.

Lots to think about. 


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Sorry but this is probably rather garbled... but my mind is not yet sorted on my wishes yet. 

There are mechanical helps which will sort out choke reflexes... a big fear for people with MND. A Tracheotomy will help if its placed sooner rather than later..........

There is so much more to think about, to discuss with family and friends... 

I have to leave it here...so so much on my mind.


BUT , two  good things that came out of this session: my need for touch ( hence HUG ME   etc...) and also Rebecca assessed my needs as complex and highly necessary ...... and so is arranging help from Social services and from the person who does massage, reflexology etc...


So after this info... Im off to paint now... when I paint I haven't got MND.. I'm in another world... and sooooo glad to be there, even if what I produce isn't of the highest standards.. it still soooooooo helps  me to loose myself in this way

HUG ME, I'VE GOT MND

SECOND VISIT TO OVERGATE HOSPICE

Up at 7:30... need two hours to eat b.fast and shower. Ready right on the dot of 9:30. 
I saw the transport go past twice.. they couldn't find house! Eventually set off at 9:45.

Bright sunny day. Blinds closed at Hospice. Apparently sun gets in the eyes of people opposite the window and is too warm for those by the window... Oh well! Seems a shame not to enjoy the sun... but that's me!!

Asked re menu.. I could see Cottage Pie.. (I hate mince, especially institutional mince). So opted for Jacket pot, tuna mayo and salad.

I then started my interview with Teena... a "getting to know you time". After a short while Jenny arrived. 
Jenny is a volunteer artist who was happy to share water colour techniques. We started with primary colours...... I slipped in I had an HND in Fine Art... we went on to dilution.... Then at 11:55 the table needed to be laid for lunch. But I hadn't touched the paint ! Resolved to get my watercolours out and have a go to show next week.

Escape for Nicotine.... 

Noon, lunch.  Very good, simple, filling!

More interview... 
2:00  Bus arrives to bring me back to Misty Morn.

A short sit, followed by a frenzied lay of table ( 3hrs!!), ready for book group at 8:00.

A great evening, discussing books recently read,  which we would recommend.

Well,I haven't read since diagnosis... can't concentrate... so I did a Victoria Wood monologue, "Giving Notes"... based on an am-dram Hamlet... It went down well, I feel.

All hands to the pump and the house was cleared!!! 

Bed, Shattered!!!

HUG ME, I'VE GOT MND.

0oops!!!

I have just sat down to write today's Blog and saw that whilst I had written yesterdays contribution, I hadn't pressed publish!!! Sorry!!!
My only excuse is, that I was very anxious yesterday. My throat felt very tight and I worried all day that my neck muscles were going... But all is well, fine today, it must have been anxiety re Hospice visit.

So, Hospice visit.  

I had decided to go to the day-care at Overgate Hospice, as the received wisdom is that a hospice is the best, (most supportive for family), place to die.

I had to get up at 7:30 in order to shower, dress and have breakfast by 9:30. (Showering and dressing takes at least an hour!!)

Just in time, the ambulance arrived. The driver ,a guy called Tracy, ( is that how you spell a male Tracy??) and the support person Anne. Very pleasant people. It turned out that I had taught Anne's daughter at Siddal.. She  (the daughter), doing well. How lovely it is when your pupils do well.  I allow myself a pat on the back to feel that I have contributed, in some small way, towards that success.
The lift to the ambulance was easy and Tracy and Anne, very caring.

We got to Elland about 10:20. I seemed to be last to arrive. Much to my surprise, I entered a large room with 9 people, all sitting quietly ,round in chairs. I was offered a transfer to an easy chair, but declined, as I would have had to have a hoist to get me out of it... and also I enjoy my freedom to move!

I was very surprised as 3 people couldn't walk, but the ones that could , didn't . After a coffee, I made a move on the group and circulated, chatting to everyone!

The staff circulated too, and were extremely pleasant , helpful, kindly and attentive.

I did make a faux pas, when raffle tickets were being sold. I bought 1, the norm seems to be 2!!! Note to self, remember next week.


Lunch orders were taken, and they dealt very well with my dietary needs, ie no cheese, no yeast extract etc. So, I couldn't have the soup, but the gravy on the Chicken Hot Pot was fine. YEY!!!

After lunch I escaped to the garden for a cigarette.(!) People round me (even when they are quite) exhaust me. So the peace and fresh air ,( tainted with nicotine ! ! !),  for 10mins, was very welcome.

I then had a chat with Teena, (yes, she does spell it that way),  manager. She took me to the "hospital" part. I was quite horrified.
From what I had heard things would be bright and jolly. The paint colour didn't help... a sort of pale mustard colour... reminded me of pub walls when people used to smoke in them,. and it was dark, limited lights on... I didn't understand... But the very difficult thing is : that there are two four bedded wards and 3 single rooms.
When I asked ,if when you were about to die,  did you get a single room, the response was: No not necessarily...
I don't know about you , but, ......I would expect privacy at this time, ie end of life. Maybe if not for me, but for my family....

I need to think about this and investigate further.

HUG ME, I'VE GOT MND

WHITE RABBITS !

Yes it's Oct 1st ! 
Mum always said that the first thing you had to say on the first of every month is, "White Rabbits"... it brings you luck apparently. BUT as I never  remember, I'm not rating this!
In fact,  My first words were, " Morning Meggie, bathroom for me, then tuna for you"!!

Oct 1,  and the day to begin painting. One year exactly to my next big exhibition.. and the opening of my sister Blog, "A Year in My Studio".

10:30 and Paul from Calderdale Transport came to check access and look at my wheelchair, to check they would be able to take me to Overgate Hospice tomorrow. All passed fine. Apparently, for my chair you need strong bands to lock down, ambulances don't carry these..... Why????

11:00 and an interview for research purposes with Melanie , she works on a project at Sheffield , looking into possible links between chemical exposure and MND. This lasted an hour, and is the third piece of research I have contributed to.

12:30 and I called Stuart at Brookes Millor, Elland. BOTH parts are now in for the new braking system for my car. He asked me deliver the car. Didn't seem to get it that I cant drive the car, as it is not safe!!! He said well , you've been driving it haven't you,  and seemed amazed when I said I hadn't  But  why did he think I needed the new brake system, if not for the very reason that  the car is unsafe to drive!! Beats me!!! When I asked how did the brake system work, he responded that he didn't know and had never actually fitted one!!! 
OH Dear!! Im not holding my breath that I will motoring from Friday!!!

1:30 and Karen and Chris arrived. They had stopped for chips on the way and have promised to bring me some on Wednesday. Yey!!!! Brill , thanks!  But their real purpose is to walk me... I did the long circuit with the zimmer..

Chicken stock bubbled away and eventually I made and ate soup at 9:15 !

6:30 and Justine arrived with some mushrooms (requested for my soup) and a lovely bunch of flowers. Very timely, as my lilies had died.  I do love flowers. We looked through the many, many sketches I had done for Calendar Girls. She seemed pleased.


9:00 and Ester visited. She ironed my jeans for tomorrow and did a few other jobs. She brought me a plated meal too. Yum!!!

11:00 and Ester went. I sat quietly, and the next thing I knew it was 1:00 am.. and so to bed....

Hospice visit tomorrow.. anxious.

HUG ME, I'VE GOT MND

BRAVE MEGGIE

My dear cat, Meggie ,has been fine with the stair lift from the word go. I did wonder how she might react to the wheelchair though. Well she has until today always turned tail and run. I have found this stressful as she really needs to get used to the way her mum now moves around. BUT, Today  RESULT.... Meg sat on my lap, I was in wheelchair, and I tentatively move it, a few yards at a time. She sat on my lap from the dinning room to the kitchen! YEA!!! Result! But then when she moved from my lap she ran away... so more confidence building needed... But we have lots of time to do it. 
Well done Brave Meggie, you are a superstar!!


As for the rest of the day.. well the bags ordered from the supplier arrived promptly I've had an order for 4 but the rest of my stock is in store.. so pleased I can complete the order. 


Tesco man came on time. We may have lots to say against Tesco , but they are a lifeline for me and all the guys who bring in the goods are kind and put stuff exactly where I wish it to be.


Watched "24hrs in A&E", last night. A lady who had cancer was close to death. Her family surrounded her. The lady said," I'm going". Her children said ," No, you're not going anywhere". I found this hard to listen too. I realise the family were actually saying , We don't want you to go.  BUT for the person near death might it be kinder for the family to give in and simply say something like, "Yes, it may be soon, but we're here, and we love you. We don't want to say goodbye, but realise its inevitable. We love you we give you our love and  hugs always. "


I've been referred to the hospice, Overgate, in Elland. I'm number five on the list. What they do, initially,  is to see you, to understand your needs. For me .this will be day-care. I will beable to go there, have a meal, a bath, massage and more importatly talk about preparing for my death and for my wishes surrounding this. This will include how I wish to die, what interventinions I wish , or don't wish.. 
I think the hospice is the place to die ,as ,as far as I understand, family and friends are well supported. As my girls have partners, but a dad who doesn't communicate with me, I feel I must make provision for them all to be supported... like having another parent. At least I hope that's how it will be for them. Who knows... I hope this will all be a long time hence, but I will be happy if I. and they , are prepared.


HUG ME, I'VE GOT MND