Old 08-26-2015, 02:07 PM #16 (permalink)
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Default Re: Mum has MND. We are struggling.

Hi Sharon,

I agree that you should definitely check her breathing. She might need a trilogy that will help her sleep better and breathe better. It is nice of you to do what you are doing. I had a full job, 4 kids, a husband that is a doctor and works very long hours and visited my sister every single day in the last 3 years of her life. We lived 30 minutes drive away from each other. My job was basically to take care of all her medical care needs (doctors, nurses, therapies, insurance, hospice etc) and be her imotional supporter. She passed last may and i look back and say, how could i do all this? I guess love overcomes any obstacle. Now i miss her more than anything, but i am at peace that i did everything i could to be there for her in the most difficult time of her life. I cried with her, i gave her smiles, I snuggled, I fed and we mourned the end ond of an amazing sisterhood

I am sure you will feel the same at some point. You are an amazing daughter
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Old 08-26-2015, 05:59 PM #17 (permalink)
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Default Re: Mum has MND. We are struggling.

Hi Sharon,
usually rather than struggling to breathe what you will notice is that they breathe more shallowly and maybe are using their shoulders to breathe by lifting the shoulders rather than breathing deeply with the stomach.

So sorry it's all happening and it is very hard.

If there are concerns you or your sister can phone the clinic and either talk to a doctor or specialist nurse there or request another appointment.
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Old 08-26-2015, 10:29 PM #18 (permalink)
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Default Re: Mum has MND. We are struggling.

Sharon,
If her FVC is 25% or anywhere near, I think the burden of proof is on the clinic to explain why they have not ordered BiPAP. She may be breathing shallowly and so not perceiving difficulty, but there is a tipping point and you'd want a machine in her home when that happens.

I agree with Tillie and the others, call them and express that you have seen the guidelines are very clear that BiPAP should have been started by now, and is there a problem with that?
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Old 08-29-2015, 07:59 AM #19 (permalink)
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Default Re: Mum has MND. We are struggling.

I am grateful for your guidance.

I asked a lot of questions and discovered that it's my dad who has been the obstacle to NIV. It seems he has either been ill informed or not in a position to take in the information, if it has been provided, about Bipap. I think he has resisted the suggestion thinking that once mum was put on to the machine she couldn't detach from it (like invasive ventilation).

I was able to share with him everything I have learned about Bipap (much of it from this forum), & he and mum are now better informed and happy to discuss it with the clinic this coming week. It will of course be up to mum, but at least she and dad will have the information they need.

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Old 08-29-2015, 04:42 PM #20 (permalink)
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Default Re: Mum has MND. We are struggling.

Well done Sharon!
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Old 09-03-2015, 01:16 AM #21 (permalink)
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Default Re: Mum has MND. We are struggling.

My mum died this morning.

I spent the day with her and dad yesterday - she was fine. My sister rang at 7 last night and said mum was unwell - temperature and not so responsive. She then called at 9 to say she had the temp down to normal, but mums breathing was laboured. At 4 am she said I should come. Dad and I and my sister sat with mum and held her hand. And then she was gone. We didn't expect that. I didn't get to say what I wanted to say. 😪
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Old 09-03-2015, 02:48 AM #22 (permalink)
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Default Re: Mum has MND. We are struggling.

Sharon, I'm so sorry. What a shock. It's good that your mum was surrounded by family when she passed. We should all be surrounded by love that way.

I, too, felt pain that I didn't get to say what I wanted to say when my father died of dementia. So I wrote it all down, which was a good thing to do, and I picked out some of it to say at his funeral. That made a big difference to me, I think.

Thank you for sharing with us during this past month.
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Old 09-03-2015, 07:55 AM #23 (permalink)
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Default Re: Mum has MND. We are struggling.

Oh Sharon I'm so sorry for your loss, and so sudden it must be a shock.

I hope you can find peace with it soon xxx
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Old 09-03-2015, 09:18 AM #24 (permalink)
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Default Re: Mum has MND. We are struggling.

Sharon, I am so sorry for your loss and know it is a shock to lose her like that. I am glad you were there to hold her hand in the end and she knows how much you all loved her and unspoken words or thoughts will not change that. She grew her wings surrounded by love.
I cannot finds the words to say about the loss and sorrow you are feeling but wish you peace and comfort moving forward.
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