Lived Experience Forum

[Sahara]

I feel very alone with this. I don't think my siblings and I are on the same page at all!

My Dad is getting discharged from hospital tomorrow and I know I will be the one to have to organise his care... although my Dad is refusing to have nurses visit him at home, refusing to have any form of 'home help' and refusing just about everything else... so it's really impossible to 'organise his care'.

I called my sis just then and she says she 'can't get away from work' tomorrow. That is after saying she could take carer's leave at any time and even saying that she wanted to take carer's leave and to be there for my Dad. Now that has suddenly changed and she is back in her workaholic mode. 

My brother has been ok, just noticeably absent a lot of the time.... he calls in for 5 minutes and that is that. I will try and have a good talk to him tonight. I don't know. I think I just have to forge ahead and do stuff without involving them, maybe - I don't know at the moment.

Who cares for the carer?

I would love to have someone to talk to. I am very sad.

[Former-Member]

Hi @Sahara

Sorry to read that your Dad is terminal. It must be such a hard time for you. It does make it complex when your father is refusing outside homecare. It may help to arrange a family meeting with your sister, brother, father etc to discuss the best way forward with your Dads home care so no further misunderstandings occurr and to work out a firm arrangement that is fair - so you aren't feeling and being alone in organising his care. Do you think that would help? Feeling for you and sending a cyber hug x

[Former-Member]

Hi @Sahara

I also just wanted to add that I am sorry if I have missed any of your posts in the past.  I don't have much opportunity to read many posts or threads (mainly only a few new members posts), as it's just impossible for me as I am so busy in my personal life and have little time. So I miss a lot and don't follow threads. I wanted you to know this as we use to talk a lot and you have always been so kind to me and others. If you ever feel lonely or want to talk please tag me otherwise I won't see the post. Thinking of you ❤️

[Amour_Et_Psyché]

Hi @Sahara,

Thank you for sharing the place you are in at the moment. I'm sorry you are feeling so sad and alone. 😞 It can be such an isolating experience when you feel you are not on the same page as your family members - especially, in regards to a family issue that needs a collaborative approach, where everyone is on board.

I am also sorry that your dad is terminally ill - it is terrible when a close family member is dying. It makes it even harder when such family member is very particular about the care they will accept; in your case your dad refusing home care. As @Former-Member said, I was wondering whether it may be a good idea to organise a family meeting to discuss the ins and outs of your dad's care? Perhaps, it will be good to put all your cards out on the table, so you are aware of what issues your siblings and you are on the same page on, and which issues your siblings and you are on different pages on? Then, although you may have some different ideas, you may realise that some things you collectively agree on - this may help you to feel less alone?

Please take care and continue reaching out on the forums - I am positive there are a lot of members who would be more than happy to support you.

Kindest,

Amour_Et_Psyché

[Owlunar]

Hi @Sahara

Both my parents have gone now - and as my sister was the one my mother preferred she got to be the sole carer outside of the very high standard of my parents' care - and attended to their other affairs as well - and I was happy enough to let her do that - 

But I did feel pretty crappy about not being able to even see my mother for years after Dad diedd - she was pretty bitchy and I chose to stay away and refuse to feel guilty

Mum dropped her bundle after Dad died and I am glad she was in care already

But about your situation - 

Yes - you and your siblings need to get around a table and work out a system - you will find it hard if you are the only one your Dad will trust with his affairs - no nursing help - not domestic etc - that is too much for one person - you need to be able to walk in and out - you need respite - as you said - Who cares for the carer?

You need very much to care for yourself

Sisters - hum - yes - I have one like it - we must have all been standing in the same queue when sisters were being distributed - yours is a workaholic - and your brother is a bit flakey - maybe they are just stuck and can't help - but don't let them land the lot on you - that is too much

So as hard as it is - I guess your Dad will either have to accept help in his home or he will need to go into supported care - and yes - I have looked into My Aged Care myself and it is a nightmare of a puzzle but depending on circumstances people are given access to Government Assistance

Keep posting Sahara - you need to right now

btw  it would have been my Dad's 98th birthday today - he died just before his 91st birthday and I have a card and a stamp and I guess I will just keep them in the drawer - I don't have another Dad to send it to but at times - things can become precious - I will keep the card

All the best Sahara - I know this is a tough time - and families really get their colours on at these times

Dec

[Former-Member]

THANKS FOR NOTHING YOU JUST MADE ME MORE INSANE BY MY REPLY I TYPED FORVAN HOUR JUST VANISHED

[Sahara]

Hi and thanks to everyone who posted - @Bookworm, @Former-Member, @Owlunar, @Amour_Et_Psyché,

you are all so caring. I'm sorry that you had trouble posting, @Former-Member. Technical issues can drive me crackers, too. 

We had a small, informal family conference last night. It wasn't planned or anything... it just so happened that we were all at Dad's place at the same time. It's tragic, but my sis kept working on her computer the whole time. I know it is a form of 'escapism' for her, but I still found it disrespectful.

My bro played with Dad's new mobile phone (that he doesn't even need) the whole time, so he didn't really say anything... it was more his wife that was able to contribute to the discussion.

For smart people, these family members of mine are seriously deficient at getting it all together. It should be a lot easier than this. 

My workaholic sis is going to work from my Dad's house so as someone is with Dad all day. At night... that is another story. Dad will be alone in the house overnight and we all feel that he will take a fall. The thing is, that having someone else sleeping at the house wont prevent a fall - it will just make sure that he is found sooner, after he has fallen.

I volunteered to be there- living at Dad's house 3 days per week. I hope I am able to keep this up, as I find my dad extremely draining, emotionally. He is in a very bad mood all the time. Before he got sick, he was actually a happy person.

Dad is still asleep as I write this- I checked on him then, and he seems peaceful. 

My bro has volunteered to do precisely .... nothing.

Good one, bro.

[Sahara]

The hospital has made a referral for hospice care for Dad- the nurses will come and visit him at home. Good luck with that, nurses!! Dad will just push them out the door. 

I hope to be able to call them and talk things over with them. 

I looked up all the services that are available for Dad, but so far I don't see the point in calling any of them, as Dad is refusing services. I will have to wait until he is unconsious before I bring in any services!!

The only good thing that has come of this is that the head nurse at the private hospital gave us his private number, and we call call any time we feel Dad needs an admission to hospital. (Like obviously there at the hospital, they are looking for customers - they must have trouble filling beds??)

Still, this is a good thing.

I am not so sad as when I wrote last time. I think I can get through this.

[Former-Member]

Hi @Sahara - Thanks for tagging me so I could find and read your post. I just got home from work - it was so busy today but I had a great day!! I received such a warm, loving reception (I am back from holidays). The staff and customers are like family to me and we laughed so hard I was crying. I am taking on more days there, some incorporating board meetings there and going to conferences etc now as I just love the work I do and the people I do it for. I find I am happier when with others versus being home. I love most people and the face to face interactions. I never use to be a people person but that has changed now.

It was good to read that you are not feeling so sad now. By reading your posts it's sounds like you are coping well. It's not an easy situation at all with your father's reluctance to take the offer of home nursing. I have no doubt you can do this - you are a strong woman.

It was also good that you managed as a family to sit down and work out some type of an arrangement between you all. Your brother sounds like he needs to pick his socks up abit though. Do you think he is coping? Must be so hard for you all to lose both parents in close succession. So sorry Sahara. Is your dad refusing home care because he is proud - or is there other reasons? It's wonderful of you to be there for him for the three days. I know what a sacrifice this is for you as I read how his moods adversely effect you. Hope all works out for you