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LonelySoLonely Posted November 2017

Advice on how to cope. How do I support my partner while I'm feeling so neglected?

My wonderful partner is caring for his terminal elderly uncle, alongside his uncle's wife and son. Other relatives are also involved in caring for uncle's needs as he wants to be at home.


It was over six months ago that they got the diagnosis and almost straight away around the clock care started for uncle.


We go days without seeing each other, or even speaking, because my partner stays there totally involved in it all.


I am struggling to understand his dedication to someone he wasn't very close to. I was supportive (I still am but I'm so shut out of his life I'm starting to fall apart) but it's been so long, and even when he's gone my partner thinks he'll stay there with aunty to keep her company.


His cousin lives in the cottage next door so is always there and does most of the personal care and medications.


How do I support my partner while I'm feeling so neglected? How do I put my feelings aside so I can be the for him? Is it normal to feel so hurt that he's so totally engrossed with his family?


And yes, I do feel totally selfish asking these questions. I'm trying to find ways to cope with the loneliness of not being around my partner for so long. We see each other every three or four days for lunch, or a quick hug in passing, or a quick phone call. And I miss him so much and feel so selfish that I need him when I'm not the person who's dying.

anonymous739426 Nov 2017
Thanks :-) its good to hear that the support was so helpful :)

LonelySoLonely Nov 2017
I just read through everything and I wanted to thank all of you for your advice and sympathy. 

I don't want to be one of those fly bys but I don't have an elderly person I'm caring for either. But maybe I'll swing by again if things get rough in the aftermath. 

I was so blessed to read your thoughts. And it was very distracting reading about career's cats and favourite things too. 

You're an incredible, and lovely, bunch of people doing the most difficult job amazingly. 

I can't thank you enough 💜

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LonelySoLonely Nov 2017
Those are such kind words. I haven't really done much, the most doing thing is I keep his aunty in a constant supply of pastry danish treats, but it's messed with my head being on the outside and isolated from him. He's really made a complete turnaround the last couple of weeks staying in touch. Amazing man ❤

And he is going to come home tonight!!!!!!

anonymous739426 Nov 2017
Hope so. Its been a hard journey for you, but you did really well :-)

LonelySoLonely Nov 2017
I didn't know them well. They're not a friendly lot and my other half only introduced me not long before this all started. So I'm fine...happy that he's not suffering anymore.

Thank you though and I hope when the dust settles my other half can separate himself from them enough to start living again.

anonymous739426 Nov 2017
RIP. Yes, that's so special that your man was holding his hand. Very special. Hope you are ok.

LonelySoLonely Nov 2017
He passed away two hours ago. My other half got to hold his hand. I think that's beautiful for them both.

LonelySoLonely Nov 2017
Today I had to go to the Dr and one of the tests shows iron levels are low. My partner came with me which I didn't expect as they're on the final (final) watch. He said something which helped raise my spirits: he said to the Dr that he hasn't been home for a while to cook but hopes to be home again soon, and then he asked if the Dr had any ideas on foods he could cook to help.

He's hoping to be home soon!!!! It won't be soon but he's thinking about it!

I'm lonely blah wah wish this whole thing could end.

LonelySoLonely Nov 2017
I have filled my spare moments over the past couple of days, and if you could call making pasta for my friend philanthropic then I can tic that box off too, but mostly I watched a movie.

I'm missing him so much.

Uncle is still surviving. There's nothing I can do for my partner because I don't see him for more than a moment here or there. I'm in a better frame of mind today. Thank you for that advice.

anonymous739426 Nov 2017
Barb has a very good suggestion for you. Divert your attention from these things. Go and volunteer somewhere. Take your mind off of it. If you don't - this will go round and round and become toxic for you. Remember, you have done nothing wrong. You just need to take control of your own mind - the best way to do that is as Barb says, occupy yourself - with something else. In other words, give yourself some respite from this situation.

LonelySoLonely Nov 2017
No he's not saying that! It's just how I feel that I can't find a good head space about this.

I used to live for the things I could do for others but now days I can barely keep up with the basics. I work long hours in a very demanding job which takes me away from my passion - my kids - far too much and yet without it I wouldn't be feeding or housing them.

I believe you are right though, but I struggle to do anything outside of my meagre efforts in the house and go to work. I have no balance but unemployment is high in my area so we are lucky in that I am employed. I'll think of a way to make a less privileged person's life better. I like the gifts for needy kids!

BarbBrooklyn Nov 2017
Lonely, can we re-frame "selfish" for you? (It's not your partner telling you that you're selfish, is it? It's the voice inside your head, right?)

You are lonely. You miss your partner. You understand that he's doing a good deed for someone else, but you'd much rather he be there, doing nice things for you.

Think if this as an opportunity to practice self-care. Some of us find it difficult to make time, space and opportunities to care for ourselves and need others around to make us feel "cared for". You have an opportunity to grow your capacity to feed your own soul here.

At the same time, sometimes the best way to get out of the "selfish" feeling is to do someone else a good turn. Take a lonely neighbor to lunch. Volunteer at a soup kitchen, even if it's just a one-off. Buy some early Christmas gifts for the "needy kids" drop off programs that will start on December 1.

LonelySoLonely Nov 2017
From what has been said in the past, aunty is a difficult and not always nice person. Uncle was too but getting sick softened him.

I wish this was all over. I'm so weary of hearing all the beautiful ways my partner cares for her, distracts her and keeps her as happy as he can. He said it's to keep her from constantly being at cousin who is the main carer and to help make uncle's life easier. Only knowing that doesn't help my heart. I miss him and I'm hurt of all the things he does for her and the understanding she gets. I wish this was all over and we went back to normal. I really am selfish and I wish I could find a way to have only feelings of sympathy and support. I'm really low tonight. Sorry.

BarbBrooklyn Nov 2017
It sounds as though Aunty has developed dementia somewhere along the line. Keep that in the back of your mind, going forward.

anonymous739426 Nov 2017
I think you've been completely reasonable and graciously thoughtful. Having your own needs, and worrying about his, is actually a positive thing. I think the previous comment of good boundary setting with Aunty is important. Your man will have his own grief to go through. He will have his own grief. He'll need you to support him - and maybe even some professional support as well. I hope he can get to realise that he isn't a grief therapist for Aunty!  I do wonder why he can't seem to pry himself away from Aunty right now.  Is his family pattern very enmeshed?  Maybe this behaviour has a history....

LonelySoLonely Nov 2017
Thank you for keeping me going. I feel like this is the one place I can be truly open, with my sometimes not as gracious thoughts, and be despondent and you're all just nice and agreeable and don't think I'm selfish or awful )':

LonelySoLonely Nov 2017
I don't think he's going to be very good at that. Aunty is still angry and refusing to see he's going to pass, even though they have the preacher going to do his thing tomorrow and it's actually on the end processes. He spent hours trying to explain but she doesn't get it. I don't know *head in hands* I feel so hopeless sometimes - and then hopeful so I suppose I shouldn't take the hopelessness too seriously.

BarbBrooklyn Nov 2017
Going forward, he is going to have to practice good boundary setting with his aunt, who will become quite needy after her husband passes.

LonelySoLonely Nov 2017
He hopes life will be closer to normal after but I doubt it. We're back to him being away again. I miss him...gotta keep sight of the mission, aye

anonymous739426 Nov 2017
Yes you've given him the opportunity to say, hey, this isn't entirely right! yes, it's death and we go to extraordinary lengths to be of assistance, but it doesn't mean that he has to be entirely selfless to the point where his own relationship and health is at risk - drinking coffees all day long and searching for a particular type of bread - on top of caring and "being there" day and night.  Putting healthy boundaries down is a healthy and reasonable thing. Its good to vent :-) glad you found a safe place to do it! When time comes... aunty may try and hold on for bereavement care... she should gently be directed to a professionalf for support because your man is going to need to do his OWN bereavement process and this can't be done while he's giving it to another.

Countrymouse Nov 2017
Selfish??? No it's not!!! It's Normal!

It is normal to expect communication to be ongoing. You were acting normal. Your partner, though, is dealing with an abnormal crisis and, like many men, seems to be a bit rubbish at the old multi-tasking: he wasn't distancing himself from you, he was concentrating on one thing at the expense of another. He has, with your help, since learned that "a trouble shared is a trouble halved" and has started talking. You have done him more good than you know.

LonelySoLonely Nov 2017
Thank you. It's so hard not hearing from him for days on end. I couldn't even decide if I had the right to expect him to call me each day because I'm not the one he's losing. Except if something didn't give a little I don't think I was going to be able to keep my candle burning - I think there's a point where love can be lost if it's neglected for long enough no matter how understandable the reason. 

It's amazing to be able to speak honestly and anonymously here. And thank you for replying. You've got a wealth of experience in this and I've not had anything to do with the end of life happening at home and how it affects all the loved ones. The more he talks to me the more I see how many people need to be there to keep the balls in the air. And I felt like he was choosing that, I suppose, as a way of distancing himself from me. Omg that's so selfish of me to have thought that way.

BarbBrooklyn Nov 2017
Glad for the good news on the scan!

Countrymouse Nov 2017
You're not remotely wrong to expect to be kept in the loop, at the very least; but I'm so glad to read through and see that you've really got behind your partner on this and are helping him make important progress - in all sorts of ways. Sounds to me like everything is going to be very ok for both of you :)

LonelySoLonely Nov 2017
PS also the very good news is that my lovely partner had high pancreatic enzymes in his blood work but his scan came back with nothing to worry about. I'm still on cloud nine!

I'm sorry I make aunty sound so cranky - she is but she's also beside herself with stress and her usual crankiness is much more than normal. And it takes two to tango, my partner hasn't said no on the past so he's set a precedence that is hard to change at this stage in things.

It's very comforting to read what you say. I know I'm not sounding very charitable sometimes but I'm doing my best to be as understanding as possible so I don't lose it. But it's nice to hear that I'm not exactly wrong to be upset about some of it.

LonelySoLonely Nov 2017
I think you are right. We talked today about setting some realistic boundaries for things like insisting he have 15 cups of coffee everyday with her - she gets cranky if he says no so he just gives in and has coffee after coffee. I said it wouldn't be wrong to say you can't drink that much for your health, and that there's a difference between things that genuinely cause her distress and things she's just being controlling about. He said he's making small changes but that she's so stressed out he has to move gently.

The nurses said they think the end of life secretions have started so it won't be long now. Aunty is still saying he might get better. She's never accepted that he's not going to make it. It'll get worse before it gets better now, and the best I can do is just love him and be there till things settle down. When she's past the first few stages of loss we might be able to have more normal lives again.

My pop literally had the softest sounding gurgle for a minute or so before he passed. How long do these things normally last before they're at peace? And yes, part of me also thinks that a lot of others can be at peace, and I do feel bad for thinking like that.

anonymous739426 Nov 2017
I can't help but tell you my true feelings which are that aunt seems to have no awareness or thoughtfulness that he has a homelife with you. To me, that's abit selfish. They are turning him into unpaid slavery. I know I'm sounding harsh, but the man has a life as well!!!  Because of the situation, any kind of unrealistic expectation or request is going unchallenged.  The type of bread, etc etc.

LonelySoLonely Nov 2017
Thank you each of you for your amazing advice.

His family have been quite needy of his help and support, with him doing everything they ask, from the gardening/lawns/cleaning/washing, helping with the family business and running countless errands such as aunty asks him to go get cut meat for lunch, then when he gets back asks him to go get a certain type of bread for lunch...on and on. And she's very opinionated and demanding. I've been so disappointed with cooking him a magic dinner, to help show him he's special, only for him to not even come home that night because she told him he had to stay for dinner and gets really cross if he says he has plans already.

He asked them if it'd be alright for him to go to his own work today (he hasn't worked in months with this situation) and they all said yes. He popped in between jobs, and she asked him to fix the car, and after that to mow the lawn. He asked could he do it tomorrow and she got cranky so he mowed the lawn. She told him to have lunch and he said he was really late to his next appointment and couldn't. So she got cranky. And finally he is showing some frustration towards things - I'm obviously quite frustrated with that they demand him 24/7 but he's been okay with that. He won't turn his back on things, he's not like that, but perhaps he might get some perspective that he is there to help them but his aunty is demanding too much. She's 80 and he feels he has to treat her with the utmost respect but I think she's quite unreasonable a lot of the time. I know she's grieving but she was like this before, and now she's become such a force that can't be reckoned with.

His kids are coming from miles away for his birthday and his special day with them looks like it will not happen. I look on in absolute frustration. But rather than be critical, the things you've all brought you my attention gives me the ability to find something encouraging to say - instead of saying nothing like I've been doing up into today. Thank you!

anonymous739426 Nov 2017
Great news :) it sounds like he responded to your concerns appropriately. That's great :)

LonelySoLonely Nov 2017
I work 40+ hours per week and still have two children at home, and there is the aunty, the son, the other son here and there, another aunty, an other uncle just left to go back to his home country, and my partner's father about to arrive, nurses, plus my partner, so they're quite crowded out with carers.

I did have a bit of a talk - okay it was two and a half hours worth of talking and after reading the pp's post it's rather lucky it didn't end in a mess - and I did tell him I miss him and that I can't go on living like this: not hearing from him for days on end and not knowing if he's okay or what's happening. I said I'm not asking him to leave his uncle, just to call me or text me and let me know what's happening. He has started texting regular updates and surprised me by coming home last night and the night before. He's opened up and talking about what's happening and his thoughts around each member's involvement and how he's feeling.

I have given much thought to the post about living out past regrets; I'm not sure if it's a 'regret' but his wonderful grandfather, who raised him, died suddenly when he was 14. He loved him and looked up to him and still does very much. Maybe he's finding his way through that.

He decided to step back a bit yesterday and see how things went for his family but one of the cousins doesn't take care of uncle the way the rest of them do - he has him walking with a walker rather than wheeling him in his chair, and sits him on regular chairs he could fall off, so the others are very stressed. They're all exhausted too and he was hoping the other cousin would be more helpful to relieve him and other family a bit. Cousin is going back to his hometown to work today but it was a wonderful little moment we could spend together and it's helped me.

I'll be a constant source of woe when the warm glow wears off - get ready!

Seriously though, it's very good to hear your thoughts. I can't really talk to friends because they see the outside, the obvious that he's neglecting his most significant person, and I'm too upset to try to explain that it's more than that. I don't think he has lost our love, just that he can't manage the two situations and his head is going at a million miles with whatever thoughts he needs to have to process himself with this situation.

Thank you (:

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