this post was submitted on 17 Nov 2024
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i think my upbringing is messing me up atm.
Old man was/is a sub specialist looking after acute disease / end of life stuff. Emotion is completely out the window when it comes to care (shit needs to get done with a clear mind). I was on the phone from about 13yo speaking to these patients when he wasn't home (which was a lot) and all I could do was listen to that fear. They just wanted someone to hear them (emotionally). Used to go on rounds with him and he has a very good bed side manner, but once out of the room back into get shit done mode.
Seeing mum in her chair just staring at the ground depressed is heartbreaking. Asking me to read texts from buds is heartbreaking. Her telling me the old man hasn't said a nice word since (he's in doc mode) is rough. I'm sort of caught between being someone she can speak to with emotion, but then I have to switch my own on and off depending on what needs to happen. When you leave the room it's a tidal wave of the realisation of a new reality for her.
All my discussions with the old man are clinical (and it needs to be), but I can see a few cracks in his demeanour which is.. unusual and.. heartbreaking (and telling).
I don't really have hope that her vision will recover beyond where it is now. But flipping emotion on and off like this is something I've never done.
All the hugs.. its such a tough situation to be going through, for everyone 💛
I'm sorry you're having such a hard time mate. I was with my mother through her difficulties and you're right, it is heartbreaking.
It takes a real toll.
I hope everything works out ❤️
I just thought of something. Everything now is sleek and touch screens, but perhaps if you went for technology that was a bit older it would have raised tactile buttons that your mum could feel so she could control it. You don’t even have to look.
You can get old iPod shuffles or generic mp3 players off eBay and they clip to clothing so she can’t drop and lose it. I did have a generic mp3 player that ran off a simple SD card but it had a hissing sound so ymmv.
Mp3s of music can be ripped from cds and maybe even music and audiobooks downloaded from public domain sites like the Internet Archive. You might even be able to get cheeky and download something audio heavy (and public domain! wink) from YouTube. Winrar can help you with any conversions.
There are also narrators built in to some operating systems and screen readers if that wasn’t good enough.
I’m sorry, I’m not trying to be toxically positive or dismiss anybody’s emotions. This is terrifying to go through and I can’t imagine the sudden loss of independence she feels.
I just thought to offer some options that might help with boredom/depression and allow her to choose activities for herself/control the device
Edit: Can you get screenreaders on phones to read texts? Maybe she can get a jitterbug (simplified phone for elderly) and maybe there can be buttons where one or two numbers can be programmed in. Or Siri can be set up to allow her to call people.
It really helps mentally when you know you’re able to do something without assistance. It’s a comfort knowing any time of the day or night you can choose to listen to something or call someone whether a support person is there or not.
gees, so many hugs.
You shouldn't be doing this and in the past your dad shouldn't have asked you to do that.
I suggest getting a nurse or aid in to do a lot of that. Contact the hospital about organising one.
and hugs again.
I’m so sorry. Aged, end of life or disability care can be brutal especially when it’s your mum. Definitely get some carers in to help share the load
Easier said than done, but you need to allow yourself the space to just be outside this dynamic. This is new territory for everyone and even for those that work in field. We can think or imagine how we’re going to respond or handle something like this, but the truth is we never know until we are in the moment.
I hope that you have people close where you can express this. It might also not be what your father wants to hear right now, but it sounds like your mother needs him as a husband and not a doctor right now. The sooner he hears that, the better. She’s probably scared and she needs to feel like she is more than someone who needs to be treated. You know, patient centered care and being holistic and all that…
Sending you the biggest hugs. Please talk to friends/loved ones/or other if you can.
He’s probably in clinical mode because he’s overwhelmed and feels he might not cope or be able to help otherwise
That’s very likely. It’s common to retreat or default to (we all do it), but it needs to be pointed out to him.
Yeah. Some of us are like that more than others because that’s where our strengths are, or if we break down then what help can we offer.
Hopefully he’s able to handle the emotional side
Mate, that's definitely a lot to wear on your own. It's a very delicate situation to navigate. I have absolutely nothing useful to add except that you're an incredibly awesome human and as everyone else has said do talk to others about it (vent here, to a friend, a shrink...) You shouldn't have to go through this alone. I hope this difficult time will eventually (even if painfully at first) bring forward some vulnerability and openness from all parties. Big hugs 🫂
Heart goes out to you Racer. Navigating this will be a challenge for anyone. We are here for support and venting. There is still a chance that your mum will recover more than present situation too. Sending healing vibes.
You'll need to be there for your dad too - sounds like he might need someone to model how to be human/emotional too. Which is lot to ask but there's not a chance in hell that he'll seek outside professional advice methinks.
So many hugs. Healing is hard, and it takes a lot of time.