Christmas, Chanukah and New Year

Hi everyone,

Haven't written for ages. Not much exciting news other than we are now warm and don't need the heating!!! (At last)

My illness is marching along--legs are now very weak so I can only just stand when Ross lifts me up.

Anyway, we wish you a Merry Christmas, a Happy Chanukah and a healthy New Year in 2017!!

Love from 

David and Ross 

Salut tout le monde,

Ça fait longtemps qu'on ne vous a pas écrit. La meilleure nouvelle, c'est qu'il fait beau et l'on n'a pas besoin de chauffage. (Finalement!)

La maladie progresse--mes jambes sont très faibles de sorte que j'ai de la peine à me tenir debout quand Ross me soulève.

Enfin, nous vous souhaitons un joyeux Noël, une Chanukah heureuse et une bonne année en 2017 et surtout une bonne santé.

 Mille grosses bises,

David et Ross 

Olinda 25 May 2016

Over the years since we started this blog David has been the one who did the various posts. In the past few weeks David has weakened a lot and finds most tasks quite difficult and he is extremely tired. So I have taken over the role of keeping all and sundry informed about happenings here. David has been very fortunate in that his legs have remained quite strong for the past 3 and half years....however the MND has finally struck him in the legs and he can now barely stand. TOday we dragged out the hoist as we have reached  the stage of needing it to move him from bed to wheelchair and for toileting. The other significant change is in his breathing....he is finding this more difficult and he has now started requesting to use the Non Invasive Ventilator (NIV) during the day, whereas before he only used this machine at night. It would seem that his diaphragm is becoming weaker and it is this muscle that really determines how long most MND sufferers live. We cannot tell how long David will live for....however statistically speaking he has lived with MND longer than most do. We are receiving excellent support from our Health system and we are so grateful that we live in Oz....if we lived in that land of the brave and free we would be destitute by now. 

During the time he has had this wretched disease we have had 4 children added to the family.. And this has been a real source of comfort for me as I know I will soon lose my loving partner.

Ross

Article written for April MND newsletter

TITLE:  Vive mon ange, Ross.  Long live my angel, Ross.

 

by David Bloom

I am writing this story as it seems that bulk of the stories published are written by the carer after losing their partner.  I thought it would be nice to acknowledge Ross publicly while I'm still here.

This story is written in recognition of my lovely partner....

I was diagnosed with MND on October 10, 2012. My partner Ross was with me that day. 
I didn't know anything about the disease, but I sensed that it wasn't good news. On returning home after various tests in hospital to confirm the diagnosis, I didn't do internet searches. I knew it was progressive, degenerative, incurable and terminal....that was enough.

I have received extraordinary care from several organisations......Calvary Care, Austin health, Eastern palliative care, Care connect, Home instead, Caritas Christi and Inspiro
care, just to name a few. Their help and care have been extraordinary so Ross and I would like to take this opportunity to thank everyone for their wonderful support.

My disease manifested as bulbar onset, so I have lost my speech completely (for quite some time now), cannot swallow at all....am PEG fed and communicate through a speaking APP or the alphabet board, which is easier for me. It is very hard to realise that "tomorrow" will definitely be worse than today. So many times I have asked myself how much more phlegm can there be??!!

I know some people have to endure this illness without a partner, but this article is all about my loving partner Ross. That said, I have enormous respect and admiration for those who have to face this horrible illness alone.

My lovely Ross has had to forgo many things which he could do before without hesitation, just to be with me. He no longer attends church on Sundays and he has stopped attending book group as I cannot be left alone due to toilet issues. In effect, he just can't go out without taking me or my needs into consideration.

So many times throughout this journey I have thought that without my loving partner, I would rather just take a pill and finish it all off. But I do have a partner, so if I had disposed of myself, I would miss his smiling face and the most important thing of all....cuddles in the morning. Fortunately after spending a night on the NIV (respirator) I wake up with good breathing, so this is the best time for hugs and cuddles....it's impossible at night....after a full day my phlegm issues are hideous. This intimacy is the highlight of my day and makes my life worth living.

Paradoxically, the other thing that is important to me, even though I can no longer eat, is to see Ross eating nice flavoursome food. He is not a cook--that was my role, but he has certainly improved with practice. It is very important to me that he eat well after I've gone. Simple food, but tasty and of course, caramelisation being one of the key aspects to good flavour. I don't get jealous smelling his food; I'm past that. It makes me happy to see him eat tasty food and we grow numerous vegetables on our block in the Hills (Dandenongs). 

Ross works constantly throughout the day and never complains about all the chores.

I know that in marriage (and we had a commitment ceremony with over 100 people in our garden Feb 9, 2013) the adage is to care "in sickness and in health till death us do part" but from my perspective, having someone look after you around the clock does trigger regret and sadness and a sense of guilt as Ross is rarely able to totally relax.

One of the hardest things for me is being so dependent on someone and particularly feeling so useless. I can't cook, weed, garden, dress myself, go to the loo....I can't do anything apart from type on this iPad without assistance. Some people may not mind being waited on hand and foot, but it is certainly not my idea of equality. For me, it is a horrible way to approach the end to one's life. I feel useless, useless, useless... 

 

My Ross is one of the kindest, most honest and steadfast people that I have ever met. 

A lovelier partner does not exist. I'm so sad that we won't live till a ripe old age together--words just can't express how I feel.

Friends and family are very important, but for me, I just don't think my life would be worth living without my darling Ross, so thank you sweetheart for your love, care and devotion. 

From your beloved David. 

                                   

Thank you

Dear all,

Just a brief message to thank all visitors who dropped into Bethlehem while I was there. It certainly did make my stay much more pleasant.

Love,

David 

Bob and Susan's wedding early December 2015

Our friends Bob and Susan finally tied the knot after 20 years together.

It was a lovely day!

I even managed to dance a bit...something I couldn't do today as my legs have deteriorated so much over four months. I can barely stand now.

There was Klezmer music and even Indian music...very mixed and good fun but very very loud....unreal!!

Castlemaine, veggie garden and my stay at Bethlehem which is coming up

We just spent nearly a week with our dear friends Jacqueline and Philip (J & P) in Campbells Creek, Castlemaine which was very nice despite the heat.

We also caught up with Helen who lives there and Eric, Jacqueline's son who lives a short distance from Daylesford. Visited Daylesford for afternoon tea with J & P. Went to a new Malaysian/Indian restaurant with J & P in Castlemaine.

Ross and I visited the very dry botanical gardens and another day had afternoon tea with Helen and her friend, David at an "Austrian café" next to the gardens. Nice strudel I was told. 

Nous sommes rentrés récemment de Castlemaine, une petite ville qui se trouve dans le Victoria environs 170 km de chez nous. Nous sommes restés chez nos chers amis, Jacqueline et Philip ce qui était très bien malgré la chaleur. Nous avons vu Hélène et son ami David et Eric, fils à Jacqueline.

On a visité les jardins des plantes (très secs!!). Entre autre, on a mangé dans un restaurant tout neuf avec J et P. On a pris le goûter deux fois...l'une dans un café "autrichien" très bon strudel paraît-il et l'autre à Daylesford....très médiocre.

Ross m'a emmené aux jardins des plantes, ce qui est très sec mais c'était agréable de sortir un peu.

Veggies:

Due to the warm weather, we've had an amazing tomato crop at home and zucchinis galore and a few cucumbers and a few eggplant. Can remember seasons where we ended up with green tomatoes.

Is it climate change or just seasonal variation? Who knows. You'll have to ask Donald Trump....he has an answer for everything!!!

Nous voilà de retour aux collines et au moins il a plu aujourd'hui....nos plantes et légumes ont soif!

Il a fait très chaud cet été et on a eu des tomates en abondance, courgettes, concombres et même quelques aubergines. Je me souviens des étés où nos tomates n'ont même pas mûri! Est-ce à cause du réchauffement de la planète ou est-ce dû aux variations saisonnières? Qui sait. Pour en savoir plus, adressez-vous à Donald Trump....il sait tout!!!

Stay at Bethlehem, Kooyong Rd, Caulfied.

Next week, Ross is visiting his family in Portland, Victoria and I will be staying at:

Wednesday 16th March, St.Teresa's ward.

The hospital's address is
Calvary Health Care Bethlehem
476 Kooyong Rd
Caulfield 3162

Visitors welcome from Wed 16 afternoon till Monday 21 evening. Ross is picking me up on Tues 22.

Electric wheelchair

Just letting you know that my electric wheelchair came yesterday.

It's good to have some independence, but the reality of needing it as my legs give in is somewhat depressing.   I can still walk a tiny bit, but really very little.

We went around garden yesterday, but as it had rained the wheels got clogged with dirt which made quite a mess...at least we have floors and not carpet.

You can raise and lower the legs, spin around with actually moving forwards or backwards and recline the whole chair. The chair is quite long so our passageway which is 1100mm wide is too narrow to spin around in....have to continue to bedroom or bathroom for that.

Je vous fais savoir que mon fauteuil roulant électrique est arrivé hier. C'est bien d'être un peu indépendant mais la réalité, vu que les jambes ne fonctionnent à peine est assez déprimante. Je peux encore marcher mais très peu. 

Hier je me suis promené dans le jardin. Ca a été mais les pneus se sont remplis de terre, Ca a créé du gâchis dans la maison. Au moins on a du parquet et pas de moquette.

On peut ajuster la hauteur des jambes, et faire un cercle de 360° sans bouger. Mais la chaise est assez longue; donc on ne peut pas faire demi tour dans le couloir qui fait 110 cm de large. Il faut faire cela dans la chambre à coucher ou dans la salle de bains.

Weber Concert Grand Piano

Dear friends,

Reluctantly, due to my illness, I have taken the decision to put my Weber concert grand on the market.

This instrument has been fully rebuilt and has a lovely warm tone.

If anyone is interested, or if you know of anyone or any institution that may be interested, please feel free to contact me, or to pass my email address on.

Many thanks,

David