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.
