Lived Experience Forum

[TAB]

Sorry to hear you feel alone @Sahara

[TAB]

Sounds familiar re father @Sahara except he is usually the one doing the yelling even though he is frail and dying. Its all very sad

[Sahara]

I'm sorry to hear that your father is going through something similar to mine, @TAB. Thanks for reaching out to connect with me. It is so difficult to try to care for an elderly parent, isn't it?

I finally managed to get some sleep last night. I have a massive headache, which didn't help. Now it's nearly 6 am, I think I might give up on any further sleep....

Last night I had a dream about an old friend that I haven't seem in over 10 years... we were close but we fell out and now she will never speak to me again. It's funny how I still see her in my dreams.... in my dreams we are always close together again.

Last night she was laughing and being playful in my dreams... she took me to a party - a strange sort of party like a "down the rabbit hole" party from Alice in Wonderland. There was a lot of cake. 

I don't know what it means. She was one of the reasons that I became depressed in the first place. I always felt that she deserted me. 

But this dream last night left me feeling peaceful.

[TAB]

Maybe its the processing that left you feeling peaceful @Sahara and good thing you have a sister and 2 siblings, not 3 brothers and father is 85 not 93 else would think you were my sister irl lol ok don't think my father is going home and my sister is doing everything but the anger etc and useless siblings well I'm one .. sound very familiar ..

[Former-Member]

Hi @Sahara

Sorry to read of your dilemma. My best friends husband has stage 4 lung and hip cancer and is home doing okay, but if your fathers on oxygen and deteriorating further it does not sound good. My husband has cancer but it is under control and I have not really experienced what you are going through - everyone I know who passed had agreed to end stage hospice care whilst at intensive care in hospital. 

@MoonGal might be able to give better advice. If it were me in your position and I observed further deterioration in your father's health I would call an ambulance for him to be assessed in a major public hospital in the intensive care ward. There the medical senior specialists can tell you exactly how long your father has left and should be able to refer and organise hospice care if he has a very short time to live in my knowledge. And there is the option of dying at home with homecare, which seems your father has chosen. My father chose that to (he died of cancer) but my mother rushed him to a hospice in the last week of his life.

Your father's medical specialist (oncologist?) should be able to tell you exactly where your father is at in his prognosis and longevity - it may be in all your interests to ring and speak to him and tell him exactly your situation and concerns - he would be the best to advise.

Hope it all works out for you soon and that your father is as comfortable as possible in his last days. Sending you a warm hug 🌹

[Sahara]

Yes, I think you are right about everything @Former-Member, but it just hasn't worked out so well for us right now. Dad does have an oncologist, but he wanted Dad to be discharged from hospital, as he (the oncologist) is going away today.... but that isn't the only reason...

My Dad really, really wants to go home, but he is confused and unco-operative. The hospital says he is completely competent. (???)

My sister agreed to take him home, against my advice.... even though she is a nervous wreck and doesn't actually want to care for him. She feels guilty I guess, like she has to be a martyr and care for him, even when it is beyond her. 

My Bro got angry and yelled at me, which really upset me. He yelled at me because I wanted to talk to the head nurse and question why they are sending Dad home when he is so weak and sick? Becuase I don't think he will be entirely safe at home, even though he wants to be at home.

We all just assume that Dad only has weeks to live, even though we haven't asked and don't need to know for any reason. 

Does all this make sense? I am very tired!!

[Former-Member]

@Sahara 💐🌹💞. It's a very distressing situation my friend, I understand. I hope it all resolves to everyone's satisfaction so very soon for you xx

[Sahara]

Thanks @Former-Member and everyone else.

Yesterday was a weird day - it's just my family is so dysfunctional. You would not know it to look at us - we all look normal, I suppose. 

There is a lot of mis-communication and a lot of passive-aggressive stuff going on. My Bro and my Sis believe they are both reasonable people, but really they are very difficult to manage and have a lot of trouble saying what they really think..... also, they are both very, very passive aggressive! My Sis does whole "deep sighing" thing with sarcasm and eye-rolling, while my brother tries to twist my words and and he also yells a lot. He has an extremely loud voice and is verbally intimidating. 

They really are not sensible to the needs of a dying person, either. My poor Dad. What usually happens is my Sis phones me and I sort everything out with Dad's doctors, then I call her straight back. She really isn't capable of taking the initiative to phone any care provider or doctor herself, she is quite helpless. She is just not up to it (I believe she is having a nervous breakdown! I have told her to get professional help.)

Anyway, Dad came home yesterday and he is not going too bad, I guess, for a dying person. He was able to walk a little bit, but he mainly just slept in his chair. My Bro collapsed on the couch and tried to sleep while my Sis went back to work on her computer. I made Dad a cup of tea and actually spoke to him and made sure he was comfortable.

Then.... I decided to leave. I went on-line and booked a nice B & B, where I could rest for the day in town, before catching my bus that evening back home to my husband. I spent the afternoon sitting under the shade of a beautiful tree at the B & B, on a sun lounge drinking white wine and reading a book. I told my Bro and my Sis that I was working on my PhD thesis in the town library, but I was doing no such thing! So I told a white lie, but Oh Well, I didn't feel that bad about it. I was just glad to get the hell out of there!!

Now I am back home and feel at peace. The thing is.... for the last two years, I have really been there for my Dad. I have done so much.... and my Dad has been alternatively either oppositional or helpless. He refuses to go to doctors appointmets, when he does go, he wont tell them what is wrong. He refuses to follow his doctor's advice, too. He doesn't like taking pills. 

He refuses to go to hospital, even when he can't breathe properly. I have to beg him to go. 

All this time, it's been an absolute struggle to drag my sister away from her job to help me. I took time off work, without pay, to look after Dad, while she wouldn't even take carer's leave, and be paid, when it was owed to her. She just loves working so much! 

All this time, well, most of it, my Bro refused to believe that my Dad was really sick and kept telling me that all my Dad's problems were in his head. Yes, even after my Dad lost 20 kg and couldn't breathe propery! My Bro would yell at me "There is nothing wrong with him."

So I guess I think that now it's their turn to take care of him. 

[Sahara]

I just finished a long text message conversation with Sis. I was very gentle with her, as I wanted to find out exactly what was going on! No point in getting her back up... then she will not tell me anything.

Dad is Ok- still sleeping in bed.

Dad's sis-in-law is also going over there today for an extended stay, I think. She used to be a nurse, so that is good.

I'm not sure whether to go back there to be with Dad or to stay here? I will decide tomorrow.

Towards to the end of our text message conversation, I told my Sis that I was scared of my Bro when he yells at me. I stopped short of saying he was 'verbally abusive', however I believe that his behavior is abusive, actually. I do not want to be in that house with him. 

Now I really need to decide what I want to do.

[TAB]

..sympathies @Sahara .. sounds familiar as said