Lived Experience Forum

[Gazza75]

@Former-Member 

I'm so sorry to hear about your mum.  My suggestion would be to go when you can, but, i'm not pushing you to do anything.  Just from my own experience last year.  Thinking of you.

[Faith-and-Hope]

I had a long-distance unwell Mum ..... it was pallative, but we didn’t know it at the time.  It’s really hard on the heart-strings @Former-Member, but deal yourself a hand at the table too ..... you and your coping ability matter just as greatly ..... draw the boundaries you need to draw, and try to lock any feelings of guilt in any form out of the decision-making ...... do this for you, however “this” looks or turns out to be.

Hugs and hugs Hon 💜🌹

[Snowie]

I'm so sorry to hear about your mum @Former-Member My father went through palliative care. It is such a hard road. My thoughts out to you 💗💗💗

@Faith-and-Hope @Zoe7 💜💜💜💜

[Zoe7]

I am not much help here @Former-Member but definitely sitting with you Hon. It is so hard seeing a loved one when there is nothing more that can be done but palliative care. I watched Nan deteriorate quickly at the end and although I had time with her it was heartwrenching to watch. My only advice is to not have any regrets - choose your path here with all the facts and know you will be able to live with your decision with whatever happens. Sometimes we need to put everything on hold to look after ourselves in these decisions and if your Mum is so unwell then maybe looking after yourself is best done by going now. A life lived with regrets is a hard road to tread but whatever your decision we are all here with you. Very much sitting with you and listening sweet Sherry 

@Faith-and-Hope Maybe being a slug is needed today and that is okay. You have enough on your mind and to have to deal with and a couple more days to yourself to sort things out - take it easy on yourself and just go with the flow Hon 

Hi @eth @Snowie @Gazza75 Hugs to you all as well 

[Faith-and-Hope]

^^^ You said it more succinctly than me @Zoe7  ..... that’s what I was meaning @Former-Member - support your Mum in the way that is best for you to manage, because you matter too, and if you over-balance trying to be there for everyone else, you will struggle long and hard to recover again yourself.  There has to be middle ground that includes your own needs Hon.  I am sure you will work out what is right for you ..... and as others have said, we are all here in support of you.

Much love and many (group) hugs coming your way.

[Faith-and-Hope]

I have compromised @Zoe7.

I am in the library putting a research article I found a couple of days ago into a Word doc and referencing it.  

It’s a baby step into one of my assignments, and will only take a few minutes, but I can walk away with a ✅ for having done something at least ..... and the baby steps will make a difference in the coming weeks.  

Then its its back to being a slug 😏

[Zoe7]

Baby steps are the go for both of us today Hon. Great that you have achieved something that will benefit you in the longer term though @Faith-and-Hope I am very much in slug land too today - feeling really flat and achy. Had another sleep this morning but will likely have another one this afternoon. Probably going to need to go out to get some groceries later but it isn't urgent so can wait until tomorrow. Still planning on that shower at some stage but very much lacking motivation even on that front presently. Might be a 'later today' event then a late night shopping expedition lol Supermarkets are open to 10pm and 11pm so have plenty of time 

[oceangirl]

I'm still struggling here and I don't like to say that. I am having a lot of strong emotions. I didn't sleep too well last night. I have bathed Milo and walked him, emailed a few people, made phone call to DR, made appointments & checked appointments for next week, spoken to my mum, I have done two loads of washing and still feeling like I have not done much. I have taken the leap of faith and made an appointment with someone to help with my anxiety etc. I am a bit nervous about this. I have a lot swilrling around in my head and I am too ashamed to talk about it and worry what people might think. 

@Faith-and-Hope @Snowie @Gazza75 @eth @Shaz51 @Zoe7 @BlueBay 

[Former-Member]

Thanks everyone I so much appreciate your support and your messages.  @Zoe7 @Faith-and-Hope @oceangirl @Snowie @Gazza75 @BlueBay @Peri 

Things have moved quickly since this morning regarding my dear Mum.  When I spoke to the Dr this morning she was stable and comfortable.  A few hours later she had deteriorated rapidly and was badly distressed through inability to breathe.  The Dr thinks its likely a rapid progression of the Pulmonary Fibrosis and its affecting her heart, which is also going into failure due to the extra pressure of trying to breathe.  My brother rang me from Mums bedside a couple of hours ago and said that they have now put her on high doses of morphine and oxygen to try to keep her as comfortable as possible. But she is no longer aware now and still struggling to breathe.  The Drs do not expect her to survive the hour, much less the day.  And given that she is completely unaware of anything going on around her now, I have made the difficult decision to sit tight and not rush off to be by her side.  The likelihood is that I would not make it in time, even if I did go now.  This is so very hard.  But I am thankful indeed that I found that window of opportunity 3 weeks ago to visit when I did.  I would have been devastated now had I not done that.  And since I returned, I have phoned her 2 or 3 times every day to talk to her.  In all reality there is nothing more I can do.  I hope she passes swiftly and easily.  She had an advanced care directive to not resusitate, and so she will be permitted to pass peacefully now.

Now I wait .. so so hard ... at least she has my Dad, my brother and his wife and her 2 grandsons by her side now.  I asked my brother to give her a big hug and tell her I love her.  But I am confident that she knows that .. I have told her many times.

Sherry 

[BlueBay]

My heart is aching for you @Former-Member 

I’m crying for you 

this is such a difficult time for you ❤️

Im glad you got to go when you did 

thinking of you xxxooo