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Dad in palliative care, and the strain it's causing on my family/relationship


Saphin

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So, following my earlier thread, my dad's infection cleared but his kidneys never regained function so he's been moved to palliative care. We originally thought that this would be a matter of days, but it's been weeks. His numbers have apparently plateaued, and while they don't expect he will improve, they've said it's likely that he'll either deteriorate gradually or will stay stable and then at a point suddenly change for the worse - so we have no idea how long it will be and he doesn't want to know any estimate.

 

In some ways, this has actually made it harder on my family because while of course getting extra time with him is wonderful, it is hard not knowing whether it'll be tomorrow or a week or a month and it has meant that we're all very on edge constantly. He has decided that he doesn't want to have any difficult conversations right now - he doesn't want to think about what's going to happen, he just wants to enjoy the time he has left with us; and we are trying very hard to keep those visits nice for him, and to enjoy the time we have with him, but what that means is that all the stress of what's going on is being bottled up for the rest of the time.

 

My brother and I originally took time off work to stay with my mum and visit every day, but our respective jobs were fine being flexible for a few days, maybe a week but can't really be for any longer than that, so we're now having to split the week up - I'm here Monday/Tuesday and then working in the office Wednesday-Friday; and my brother's doing the other half of the week and the extra travel and disorientation of everything being split between places is exhausting. I'm constantly worried that something is going to happen while I'm not there and I'm finding it very hard to get any break from everything. I went away this weekend to see my SO, and over the weekend my mother didn't text me when something happened because she didn't want to ruin my weekend -- and it's just made me worry about not being here at any other point as well if she's going to hide stuff from me so as to not upset me.

 

She is possibly my biggest current stress - because she is not coping at all well. When either my brother or I am here working from home, she barely leaves the room we're in, talks at us constantly and just goes over and over and over the same worries. Even when they've been solved, it's like she doesn't believe that they have, so while I listen and I comfort her, I end up having the same conversation multiple times a day sometimes. She's constantly panicky, she stresses over tiny irrelevant things, she isn't sleeping properly - she keeps getting up in the middle of the night to do stuff like clean the kitchen because she couldn't stop worrying about it and honestly, I'm scared for her. This is how she is coping while my dad is relatively stable, and still with us, and I am terrified to think how she will be once he starts getting worse.

She is using my brother and me as her support because she refuses to go to counselling, and honestly, it is putting so much pressure on us both.

 

For my brother, it ended up making him physically ill - he has a stomach ulcer from stress and for me, it is putting a massive strain on my relationship because we are barely getting to see each other at the moment, and when we do, we've ended up getting in arguments. He has no idea what to do or say to help and it is making my relationship feel like an extra chore rather than a support at the moment.

 

It is really difficult expressing to anybody else what this is like, because I feel like it is selfish of me to talk about myself in this situation.

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My mother had the same anxiety when my brother was dying. I would suggest you contact your gp, and request some meds for anxiety. it helped a great deal.

 

Why isn't your partner coming to you? I would think that this would be more logical. I would also put your relationship on the back burner, as your father should be your main focus. If your cannot get that, then he is not the right one.

 

I have been in a similar situation, twice. It is horrible, and draining. Put all your focus on your dad, as you cannot get that time back. Regrets are horrible, and I have them regarding my grandmother, who died 20+ years back.

 

Lastly, I wish you all the best through this difficult time.

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My mum refuses to take any sort of medication for it - she's from a generation where having to take medication for depression/anxiety/etc. means you are "crazy" (her words) and neither me or her GP have had any luck convincing her otherwise.

 

My partner and I talked about it, and to be honest, I think I prefer going to him. It's stressful because of my mum not communicating, but I need a break occasionally. It's just that I'm finding it hard to actually use/enjoy that break.

 

Thank you, and I'm sorry that you've been through the same thing.

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