My angel is gone

[Clues_Of_Blue]

Those of you who know me know that my two little birds and my partner are my world. My partner had a heart and lung transplant two years ago. His body is now rejecting those lungs and they have thrown every treatment at it they can, to no avail. His health is in steady decline, the lungs severely damaged. In all likelihood he will need another transplant. There is no guarantee of finding a suitable donor in time. We don't know how this will play out, how long he has left. That is cause enough for grief.

Throughout the many hospital stays this year, there have been a few scares and vet trips for our first-born little bird, Sir Pecks (not his real name). It took so long for them to even identify why he was unwell. His liver had become very enlarged and was causing him great discomfort. He was so sleepy all the time, was frantic about eating, he barely sang or preened any more. He was struggling to breathe. Our sweet, happy little bird, our child, who loved to sing at the top of his lungs right in our ears, who loved to play and bathe and pinch bits of our breakfast, is now gone. We feel so empty and lost and heartbroken to be without him. That in no way diminishes our love for his brother, of course, but our grief is so huge. It's hard to face each day, knowing he won't be there, screaming at us for attention and getting into everything. I miss him so much, and I am scared for my partner. I feel like my family is crumbling and I have no power to do anything about it. How do you live with grief like this?

[Clues_Of_Blue]

Thank you, EM, the hugs and the shoulder are welcome. Tears have been close to the surface, lately. Not standard for me, I am overwhelmed.

Yes, there is a lot of pain. I miss him all the time, everything reminds me of our little angel. Sounds, sights, smells. Everything.

I understand about taking in more rescue animals. It's untenable in my situation - LM needs so much help from me now. If he does have another transplant (and we've had no word re anything in that area since his hospital stay), we would be away for months. It's bad enough to be parted from Mr Feisty. I don't want to bring home a new companion & desert them as they are still learning to trust us.

Worry for LM is greatly feeding my grief and overwhelm. He seemed sort of stable for a week or two. An outing yesterday really highlighted that his health is getting worse (& how desperately I need a time out to regroup). The doctors knew this was where we were headed, I remain baffled, angry & triggered that they failed to support us for a Carer's Payment. Apparently they'd organised a meeting with us to talk over his situation last Friday. Too bad they didn't ask or tell us about it at all, so we get left looking bad for not attending, when they are the ones who have been negligent. I am exhausted by this and furious at the mismanagement. I know I need to tackle the BS we're dealing with but I don't even know where to start, who to speak to, what to say. Also the help from the Carer's Gateway remains absent, a full month after being approved. I e-mailed them a week ago; no response. The triggers of the "you don't matter" message being hammered home are paralysing. I don't think I am capable of diplomacy if I get on the phone with anyone, I harbour much malice right now.

I understand about your Darling Girl. You love your dear chicken, of course you were moved by the sight of a video of her. Just like I am by pictures or videos of Sir Pecks. We love our feathered friends fiercely, we are so protective of them, the hurt of that loss weighs heavy.

I appreciate you sitting with me. There is much pain, for Sir Pecks and for LM. I fear it will be just me and Mr Feisty all too soon, without our lively little mover and shaker, and without our steadfast rock.

Love you too, dear friend. Thank you for being you.

Blue.

[ecomama]

HOW IN - SANE they didn't tell you about a meeting you were supposed to attend! 

Omg how much more infuriating can this situation be? 

That's just plain incompetence! 
I can't believe it, that's beyond neglect. They should have THEIR pays docked. 

Gosh the feelings of injustice in the multiple situations right at hand in your life is incomprehensible right now. 

I'm hoping so much that LMs health doesn't get worse. 

Some thing HAS to change. 

I know you're exhausted and I know there's nothing I can do to physically help. 😢

You were thinking to try your GP, not sure if you made that appointment?

Then here we go hoping another track could help, when we feel that there's only brick walls to hit. And exhaustion permeating it all. 

I'm so sorry Blue. Holding your hand. 
Love EMxxxx

[Clues_Of_Blue]

Yup, that's the sort of BS I'm dealing with. Let's not ask how much more infuriating it can get, that's gonna invite more of it! Yes, incompetence and neglect, incomprehensible injustice by the bucketload. My anger is through the roof.

Lung function test confirmed LM's condition is continuing to decline at the same steady rate, not only not stabilising but not slowing down even a little. Yes, something has to change.

We see the top dog in the transplant dept. next week and will be raising hell about those forms. It may be harder to ignore the reality of how much I am needed at home with him sitting before them in a damn wheelchair, with his oxygen bottle, still getting puffed from just sitting there. So help me, this will not continue.

LM's dad has been helping financially and we still have some of my tax return left. Carer's mob actually followed through with something today, we've got a credit for our ready meals, to the tune of $125 a fortnight for the next 3 months. That is actually useful. Something going in the right direction, if a rather long-winded process getting there.

Yes I am beyond exhausted. I hate the walls that have been thrown up in front of us at every step. It's too much to ask for just a quiet life with my husband and our birds. I fear where I'll be if I lose him as well as Sir Pecks, poor Mr Feisty will be left with one lone burnt out shell of a parent. There is so, so much grief to process, I don't even know where to start.

I am thankful you are here to understand me.

Blue.

[ecomama]

Dear Blue, 

I now know this appointment with the specialist did not bring the news we all had hoped for. 
This is the saddest of news. Gentle hugs to you all. 

I cannot imagine the insurmountable wall ahead. I don't want to! It's too much to take in all at once but you must have been burdened so heavily with the news - I cannot imagine. 

The only reference point is what BF went through with his beloved first wife. I was the very first person he had shared his grief with, and this was many years later and a failed marriage in between. 

Not acknowledging grief is a terrible slight on our society. 
This won't happen on my watch at least with you. 

Here for you. 

I'm very glad for the meal money you will get per fortnight. I'm also grateful that LMs dad is helping out financially. Blessings there for sure. 
It's clearly not enough financial support to sustain your family, so I hope the application for Carer's Payments go through without a hitch. 
Even this is skimpy I know. But I also know you and whatever monies comes your way will be used well and resourcefully. 
As always. 

Sending my love to you, LM and Mr Feisty, 
EMxxxx

[ecomama]

Sorry Blue, as I pressed Send, I thought of something... IDK if it's helpful.... IDK. 

Have you considered applying for part of LMs Superannuation to be released? 
I understand there's a way you CAN get parts of monies out with life threatening prognoses. 
Not sure if LM has any to draw down, but I thought of this so wanted to share. 

Love always
EMxxxx

[Clues_Of_Blue]

Hey EM,

The news wasn't exactly a big surprise to us. It's not 100% ruled out even now, but the doctors have expressed from the start it isn't wise to get our hopes up. There are a range of medical reasons it in all likelihood won't be viable along with their thoughts on quality of life - insofar as psychological matters go, we have been very clear that those are not a barrier for us going forward, only physical ones. They continue doing tests to establish if it is definitely not viable, with the understanding that the odds of surgery going ahead are extremely slim at best. So we are taking it one day at a time, knowing he most likely won't live another year.

You're right about unacknowledged grief, it can do dreadful things to a person. I have read so often about people grieving who get all this support and attention for a few weeks and then suddenly everyone expects them to be back to normal and fine. Say what? Grief doesn't just disappear. Support doesn't stop being needed. Did BF get that sort of treatment after losing his first wife?

I am grateful to have you to talk to, and also for BM & RB (Best Man & Ring Bearer, as you may recall). They, too, are struggling with the impending loss of their dear friend, LM & BM have been an inseparable pair for many years. BM also lost his brother about a year ago. He said to me he was reeling from how this is what he's dealing with at such a young age, that he thought rolling losses like this were what happen when you're 80. It's different for me, I am older and until now I haven't lost any humans of consequence. The thing is, the one I'm losing now is the first person in my life to really show me any love and kindness. Not to mention it being so soon after losing our sweet baby bird - our firstborn son. With everything happening with LM we haven't even been able to release his ashes and have that closure together. It's getting past the point of LM being physically capable of getting to where we wanted to do so. He is mostly using a wheelchair to get around, now, which won't fit on the path. I feel sick at the thought of all this loss, that before long our little family of 4 will be a family of 2, living in a house full of ghosts. It hurts.

Blue.

[Clues_Of_Blue]

I'll eventually remember to look into the super thing, it's a good suggestion and I appreciate it. He has a little. I don't think he has any idea how to access it. Something else to learn, and I know it could help a lot if it is viable. Such a struggle to do anything that doesn't pertain to his immediate survival, how do I use any of the remaining time we have messing around with paperwork? That hurts, too. Everything hurts and feels unmanageable.

[ecomama]

I hear you and what you're all going through is horrible. Lots of love and hugs. I'm so sad for you all. 

Yes people who lose someone close to them, whom they loved, do need to be able to talk about their loss. Also people willing to listen to this including the nice memories which can also be so sad just the same. 

It's big and absolutely lifelong. 

From what I've experienced myself, my friends losses and being "so close" to BF, I know it's important to have people to share with. 
No, sadly, BF didn't have anyone willing to listen or support him after his dear wife died. He REALLY loved her and she him. So much is evident there. 
She passed away on a Friday about midday in the hospital, she'd been rushed there from home. The story of this was so shocking to listen to and I was the first person he shared every detail with. 
People came around to their home Sat morning to express their condolences. His dad said "See you at work Monday morning" and that was it. 
BFs 2nd wife told him to get rid of her ashes. He spread them on the grounds of their family home. Not the home he lived in at the time. 

BF basically had a mental breakdown and went wild for a while till he met wife number 2. He knows that was a mistake, done now. 

I'm not telling you to get LMs Super out but if you wanted to do the Applications for it, I believe I know how. 
Contact the Super fund and they'll send a form out to you. Not sure about the Laws around drawing down Super now or with LMs Fund but years ago with a life threatening illness a person was allowed to draw down $50k. As I said not sure of this now or with LMs Fund. 

I drew down Super during Covid as we were allowed to do. It was very easy to do at this time. 

Hugs and more hugs
Love EMxxxx

[Clues_Of_Blue]

Hugs to you, EM, and appreciation for your consistent support.

Of course it's a lifelong thing, how could it not be? Especially when you're grieving someone who has been a huge and positive part of your life.

Wow, BF was really badly let down by everyone, by the sounds of it. I'm sorry he went through that. Of course he had a mental breakdown - as we have discussed, support plays a huge part in coping with massive trauma like that. He wasn't supported. It's a while after the fact, but I am glad he has you now, to listen and care for him. Mayhap some healing can still be done.

I e-mailed the super company to find out our options re drawing down his and/or accessing income protection insurance for me. Social worker reminded me that could be an option, honestly none of this stuff even occurs to me without prompting. Sigh. Dunno how much of a useful response I'll get with an e-mail, but it's what I'm capable of, so it's a starting place. We'll see what happens.

The waters are muddy again re a second transplant. Tests indicate one of the medical reasons they didn't want to do it is less of a problem than they thought. Still by no means a guarantee of going ahead, but a sliver of hope, the doctor was framing things in a more positive light when we last saw him. Objectively that is positive, but it's so damn hard swinging wildly from hope to no hope and back again, there is no equilibrium to be had for us. We loathe the uncertainty, especially as it's continued for months and months. It's so exhausting.

Blue.

[ecomama]

Hey Blue, it's a privilege to walk with you on this journey, nuff said. 

Yes it's very strange to give reasons for people to lose all hope, I think like almost ever. 
Where there is breath, you know my saying. 

I know you will do everything within your power to make things happen for LM, I know it's not up to YOU alone but I can't imagine LM getting through this without you. 

Waves of energy, resilience and GOOD NEWS coming through now! 

The best of all we can is self-care. It's the ONLY thing we can do on top of the endless avenues you have to explore. 

I'm glad your Social Worker suggested drawing down LMs Super or at least trying to. 
Yeah I'm not sure they'll respond via email but they might? 

Perhaps a phone call is warranted if you still need more funds. 

I'm certain this is governed by Superannuation Laws, but I also know there was that, as the ONLY option of drawing down funds many years ago. 

Don't worry about not knowing these things. We usually only know these things when we've had to go through it ourselves. Some well meaning person makes a suggestion and then we follow that path until... 

Somehow I must've "genetically inherited" my father's Accountancy knowledge because he damned well didn't share much of anything helpful with me, ever. Left when I was around 6yo, so yeah, must be an inherited bunch of knowledge. 

Sending you all lots of love, 
EMxxxx