Lived Experience Forum

[Sahara]

Hi @Former-Member, it's good to hear that you are enjoying your work after being back from holidays. I think socializing (including work social interactions) can be an excellent tonic for our mental health, depending on where we are at. 

Thanks for writing, it's great to hear form you!

My bro is probably not coping... you could be right about that. He seems to focus on nit-picky things about Dad's personality and he seems to go on and on and on about those little things... rather than talk about the real issues at hand. I mean practical issues about doctor's appointments, meals, filling scripts and hospice, etc. All the stuff we really need to do. 

It's true my Dad is in a foul mood most of the time now. I know. It's very difficult to be around him. I kind of have to ignore the fact that he is always difficult and tiring as far as his personality goes, and just get on with things.

My bro raises his voice to my Dad and it is heartbreaking. Dad is so frail and weak... how can you yell like that at an old, sick man? It isn't fair. 

My sis is sometimes sarcastic towards Dad, which I feel isn't fair, either.   

I just hide in the bedroom a lot!! 

On the surface, I guess we are more-or-less getting along and it's business as usual. You know, - family dynamics - nearly always difficult.  

It's good that I am writing this down, I think it is really helping me, because I am starting to cry now. 

I just had a picture of myself as a kid, just hiding away from everyone in my family, in my bedroom. Nothing much has changed, I suppose. I just hate all the bickering and yelling and sarcasm. I really hate it. I just want to get away from it all. I want to be in a very quiet place where no-one can bother me. I honestly can't stand my family.

[Former-Member]

It really is a great tonic @Sahara - it keeps me going. I can get really down if I stay in the home too much - I am happier when out with others enjoying their personal company.

It's really good to be talking to you again as well - we go way back. I still miss Blueboard funny enough. I like our conversations and I hope we can keep having them here as I always feel good after chatting with you 😊

It would be hurtful to watch your brother yell at your Dad as he is so vulnerable at the moment and probably scared. You have such a wonderful attitude and strength when dealing with your dads moods. I really admire how you handle that @Sahara. I will keep that it mind for myself - it's a good coping strategy to get on with things in such a situation. My husband has to see a neck surgeon tomorrow and may have to have surgery - which can be a bit riskee. And sometimes the pain gets to him and he can get a bit etchy, so I will follow your lead there.

It must of been really lonely for you having to hide in your room as a child, and having to do it again with your family as an adult. It's a shame you can't lean on each other for mutual support, it would may life so much easier - I was the same with my extended family (I no longer see them). Always felt like I did not connect in their presence, didn't feel valued - and it's an awfully lonely feeling. Sending you a hug Sahara. 🤗

But then I will have days like yesterday and other similar days where people show me much love and I connect and bond deeply with them. They are family to me. And I need them as being a carer is really hard at times - watching others suffer can bring me down very quickly unfortunately (I need to work on this). I think I would rather and find it easier if it were me that was sick instead of watching if that makes sense. So I really need to have breaks and be around people I can talk well with and have really good belly laughs to break up the intensity. The latter makes me feel so happy and relaxed - more able to handle the grief around me on my return.

Do you find that Sahara - that a sense of humour and laughter and just really enjoying the company of good others can save you at times? Nothing will make me depressed faster than either being alone or being with people who are negative and make me feel alone. 

Do you still enjoy to cook? Always thinking of you my buddy Sahara xxx

[Sahara]

Thanks for your encouraging words, @Former-Member. Yes, I remember the Blueboard days very well. That was quite a while ago now... and here we still are.... still writing and still communicating.

I'm sorry that I have not had much time to write, its been such a busy two days... I am back home with my husband right now and very happy to be home. When I am home in this house I feel so much better and more relaxed than I do with my family of origin... it really is a huge difference for me.

It's been a good two days. I have put in my first informal submission of my writing for my PhD! Yay! My supervisors will have to get back to me with what they think and advice for moving forward. 

I do remember times in my life where I have had some very wonderful times, laughing with others (as you have described), but I have to confess that it happens very rarely now. I would not say that I am depressed.... it's just the twists and turns that life takes... everyhing is very serious for me right now... and has been for some time.

Don't get me wrong, I really love to have a good laugh and connect with others in that special way. My husband and I have a good giggle about silly things - but not exactly belly-laughing. 

I don't know when everyhting became so serious!

I love to relax and enjoy myself in a quiet way, and I do experience happiness. But lots of laughter? No, not for a long time. 

How are you @Former-Member?. I was just reading on another thread that you are very worried about your daughter. It must be so hard. Sending you kind thoughts. xx

[Former-Member]

I totally understand how busy life gets my dear @Sahara - especially now having to help look after your dad. It's always good to chat with you anytime you have the time. If things get to you sometimes when you are caring, just tag me and we will talk it through. Always here you you 😊

Congrats on your first informal submission of your writing for your PhD!!! That's a real achievement! I was not aware that you were studying - what course are you doing? Would love to hear all about it.

I do understand how those twists and turns in life can diminish the laughter at times. Life can throw some curve balls alright and life can get serious. It's a bit that way for me again with my daughter going back once again into a relationship I am concerned about and I don't see her much now. It's repeating itself and does feel like Groundhog Day. And with hubby having major surgery - once again. My life circumstances tend to revolve with the same trials and sometimes that can get tiring and do my head in. But I spring back look for the good and hanging onto hope.

I was starting to get real close to my daughterso, I hope that is still there. It can be really hard but I understand it's her life and she has to make her own decisions now and live with it. And I have to accept it and move on. I really miss her but as long as she is safe and happy is what really matters. I have to learn to make more of a life for myself without her now. It get scared at times but that's when I have to find the strength within.

And my husband is having more tests on his spine/neck - he will have to have surgery or end up in a wheelchair - so that curveball is trying to roll me over at the moment. He is my world, so when anything goes wrong with him I can get distressed. So I have to fight my mind and emotions to remain strong. For me getting out and laughing and engaging helps break the tension otherwises I may go under. I like staying home and embroider/cross stitch, but if I am alone too much I dwell on my thoughts and can worry. Those  negative "what ifs" thoughts that sends my anxiety soaring I fight, talking back to that thinking with the positives "it will be okay - it will work out and I am going to enjoy life". That's is the battle that goes on in my mind - wish me luck! So far I am above water and doing okay.

I think that's the ultimate that you can enjoy your peace and relax - so important to grab onto that when things get hectic. It's wonderful how you have a safe place to fall at home that way with your husband. That is happiness for me too. Peace and loving Company, nothing like it.

I am going out to see how our new home is progressing now. It is by the ocean so may also go for a swim. Very hot here at the moment. Hope you are enjoying your weekend too.

I look forward to hearing more about your PhD. I am here for you anytime and look forward to our chats. Thinking of you ❤️

[Sahara]

@Former-Member,

I'm sorry to hear that your husband has to have surgery. That must be very stressful... I would be beside myself if my husband got seriously sick. I hope you are able to go to his appointment with him and ask the doctors a lot of questions... that is what I would be like, anyway.

I tend to go to doctor's appointments with my Dad, when I can. He hates going to the doctor and is very immature about it... it is his generation, I guess - not ever getting medical advice unless they are practically in a coma!

Dad doesn't ever ask any questions and never seems to tell the doctors the whole story. Oh, well, I'm sure your husband is much more reasonable. 

I spoke to my best friend over the phone last night and she had a go at me, because my husband is going overseas in a few months time and I will either go with him, or cancel my airfare and stay here, if Dad is too sick. 

She was very shocked that I wanted my husband to go ahead and fly overseas without me (he has family living over there) while I stay here. She thought it was very odd that I would not request my husband stay here with me, to support me. She seemed to get really 'aggro' about it, when it was none of her business, really!

I am just upset with her attitude and I feel like she was implying that our marriage was 'not up to scratch', or something. I almost reached for a drink when I got off the phone, but I heald myself back.

This is the same friend that I always have some kind of trouble with! She is so opinionated! It doesn't help at all.

This morning I am sure that I am doing the right thing by allowing my husband to enjoy his exteneded family overseas, even if I can't be with him, because of my Dad's illness. It is just one of those things. 

xx

[Former-Member]

Hi @Sahara

Its great how you go with your dad to his medical appts to make sure he receives the best care possible. I am the same; my husband will go to a doctor without hesitation if there is something wrong which makes things easier for me.

Sorry to read that your friend upset you. It really comes down to what you and your husband are comfortable with doing - no one else. I think it's great that you are so independent and caring enough to have no problem with letting your husband see his family. In my eyes that shows a healthy relationship. Don't second guess yourself dear Sahara - you know the status of your marriage and if you are happy with him going that is all that matters. It doesn't help when well meaning intentions and opinions are forced on us - last thing we need when under strain. 

How was your weekend?. Did you do much? Myself and husband went out for lunch at the place we are building our new home. It has some beautiful beach and lake views to enjoy while dining. Not sure how we are going to move whilst hubby undergoes surgery. I just have to work a way around it and hope it all works out.

I have been cleaning for some of today. I woke up not feeling too crash hot so have been taking it a bit easier. I hope to join a couple of friends for a day out tomorrow. That usually lifts me up so am looking forward to it. Have you already started to stay at your dad's for the 3 nights per week or will that commence later down the track? Hope your evening is more relaxing for you Sahara. Thinking of you 💐x

[Sahara]

Hi @Former-Member,

as of 2 days ago, my Dad is back in hospital!

There is a meeting this morning with the hospice nurses, but I think all three of us siblings are in agreement that we can no longer care for Dad in his own home.  

The thing is... and I have been reluctant to say it out load.... my Dad is unco-operative and now he is confused as well.  He is very difficult to manage from a psychological point of view (physically, he is also difficult, because he can't walk properly any more.)

Dad is very, very psychologically draining on us. I can't be at the meeting this morning, but I have told both Bro and Sis to tell the nurses that "Sahara says she is in no way confident that she is able to care for our Dad at home."  They are going to say the same thing about themselves, as well.... I think.

My Sis is very teary. My Bro is doing ok.

This is funny in a very black humor sort of way!! - Wait for it..... 

the squabbles over my Dad's will have already started. Yes! I would cry if I didn't laugh. Of all people, my Bro-in-law (who never, ever says anything) rang my Bro last night and says he believes that my Dad wants to give his brand new car to the grandson (my Sister's and Bro-in law's son)!! 

If only you knew my Bro....... it will be interesting to see what happens now. 

Can I tell you that I don't actually like my Bro-in-law all that much? I have never said it to my Sis. I would never say it in a million years. I didn't even say it last night when I heard about the phone call.

Oh @Former-Member, I like to read about you having a nice time with you husband. And going out with some friends. I so wish it were me getting out and getting to do something so relaxing and pleasant. Have a good time with your friends. Please have a laugh for me. xxx 

[Former-Member]

Hi @Sahara

If I knew you in real life you would be more than welcome to join us when we ventured out and we would have lots of laughs guaranteed!  I met a lot of my friends through where I volunteer - it's been so good for me in many ways. I have also had my moments where there has been difficulties at work - but life wouldn't be life if there wasn't some. I am glad I pushed through them as I love working there, the people and helping those who may need me? I just returned home not long ago from a shift there and just read your post now. 

Things have moved quickly with your dad. I can understand the complexity of the situation and your Dad would be welled cared for in hospital. Does he have a will Sahara? What your brother-in-law did there was most inappropriate and very disrespectful to your Dad, you and your brother. I have seen much greed and squabbles with families when their parents etc have deceased. It can bring the worst out in human nature.  I hope your brother tells him to back off. It worries me that your Dad is confused and could be pressured by brother-in-law, so hopefully the legalities are in place ???

 I hope you don't mind me being open with you this way, please tell me if so as the last thing I want to do is upset you; - I think I get the drift of why your brother-in-law would not be your favourite person. Your poor sister though sounds upset - this would probably not be helping her.

Is your Dad in hospice care presently? I hope it all works out for you and your Dad Sahara, please keep me updated. Sending a warm hug 🤗 💜

[MoonGal]

Hi @Sahara, what a difficult situation you are in with Dad and family. I wonder if you called the nursing agency and discussed with them about your Dad's refusal to have any in home care by service providers they may be able to assist with ideas about how to negotiate and shift his view on that? Someone like COTA (Council of the Aging) or if he has dementia the dementia help line. Would he be open to you saying you yourself need this "help" to make sure he is cared for and safe?

(My Mum wouldn't accept that herself - but in the end I had to just make the decisions for her, bought in 24 hour care, and after her third fall in a month and hospitalisation I took the decision out of her hands.  It is a very hard thing to do to override a parent's wishes, AND sometimes it just has to be done for not only them, but you too.)

Its a hard time for you, Carers associations can also give advice and support. 

[Sahara]

Hi @Former-Member and @MoonGal,

thank you both for writing and showing your concern. I had such a bad day today (oh well, 'yesterday' now, as it's after midnight.)

Dad has been in hospital but the hospital want to send him home tomorrow. (That would be 'today', I guess...)

He had a hospice nurse come and assess him for care at home. She seemed nice. Dad agreed to have care at home and signed the form, but I had a feeling he didn't really understand what he was signing and didn't really have any idea what that 'care' involved.

He has really deteriorated in the last 24 hours. I believe he does not have long left with us now. He is very drowsy, confused and on oxygen to breathe. 

Anyway... the hospital are insisting he go home, even though we have stated that things are not in place at home and we are unsure that we will be able to manage him. My sister reluctantly agreed to take him home and then we tried to change our minds about it, because we thought he won't be safe at home.

The hospital are like "Your Dad wants to go home and we can't keep him against his wishes".  I am like " are you serious???" I didn't talk to them, but my Sis did.

Then the hospital incredibly stated "There is no medical reason why he has to be in hospital." 

Errrrr... he does have end stage cancer, for crying out loud. He is on oxygen and he can't care for himself. He is 85 years old.

By the way, it is a private hospital and Dad has top hospital insurance and has stayed there multiple times. 

My Bro did not want me to call the hospital and try to discuss things with them at all. I got upset, because I thought there must be some kind of mis-understanding and they must not realise that we really do fear for Dad's safety, if he comes home.... he had a fall at home only two weeks ago and he has really deteriorated since then. 

Wow... I feel they are very heartless at that place and have no idea what they are doing!

So now I can't sleep. I don't even want to be here when Dad comes home, because I don't believe I have consented to care for him and I don't believe I can. 

My Sis and Bro have said they will be here and look after Dad, but my Sis is a nervous wreck and my Bro is not really a type of person who knows how to 'care' for someone who is helpless.