Relationship changing due to life limiting illness

[photocopierisbroken]

My partner has a life limiting illness. I don't know how long he will live for. It could be six months, it could be a year.
I just don't know.
I am so sad. Our relationship has changed entirely.
We are in our late forties, together two years, don't live together and see each other every weekend. We have every second weekend to ourselves. We were so happy.
He is angry, frustrated and bored as he cannot work, drive or travel. I understand this but I find him to be short and impatient with me at times.
He is not his usual carefree loving self , naturally.
How do I navigate this?
How do I accept this new normal
Where all our hopes and dreams are shattered, long and sheer term plans together, shelved?
I feel like I'm turning into his nurse rather than his partner.
It's not what we both signed up for of course but I absolutely love and adore him and will be by his side through thick and thin.
His disease affects his brain also which is possibly causing the agitation and irritability.
We've both endured abusivr relationships and marriages and when we finally found calm and live and harmony, it feels like it's been snatched away.
I have a counsellor and am beginning to open up to her about this., it feels selfish of me to feel like this but the feelings are very real.
Thanks .

I’m so sorry to hear this - what a difficult situation, and your feelings are understandable. Hope the counselling is helping x

Thanks@oopsfellover . It really is shit.
I don't want us to fall out as our time is limited however I need to explain to him that to be so irritated and agitated, while normal , it is not acceptable to speak to me in such a Curt and impatient tone

Sorry I’m new here, didn’t mean to post that here x

I'm not sure I have very good advice @photocopierisbroken but I'm in the same position. It's been thing on for longer, and sadly, a lot of the time I do find myself in nurse mode. We do not have the same relationship.

We're limited by his fatigue and moods but I try to do something a bit more normal every so often to remind us who we were. Today, I've arranged to go to visit a good friend and go to done if his all time favourite restaurants. I don't feel like it, if I'm honest. It's going to be a lot of work for me; he's recently had a bit of a physical decline and yesterday he made some frankly stupid decisions which exhausted him and caused stress for me. But I've decided I'm going to push through and do it because it's likely the change of scenery will really buoy him up and we'll have a good time.

It's rubbish, it's hard but we sometimes have glimpses of where we once were.

I also meant to say that I'm sorry you're in this position too. It's sometimes easier to talk to people who really get it, do you belong to any support groups?

ugh. This is shit. I’m sorry this has happened to your partner. Don’t get drawn into doing more care than you feel comfortable with, especially if he’s being rude and grumpy with you. It’s fine to decide to keep your relationship on the same level of contact that was working for you both and insist other options are found for care your partner might need. That way you can try to keep your time together as normal as possible. Within reason, and making adjustments for his changing state of health, you can try to keep doing the things you like to do together. So if you like to go walking, perhaps that can continue even if the terrain and length of the walks has to change and even if he sometimes needs mobility aids like a wheelchair or a scooter. If you like to go to dinner and a movie but he needs to avoid large groups of people for infection control reasons then you can order in and watch a movie on Netflix (with popcorn or wine or whatever you usually do at the cinema). The idea is you get to stay in his life as the fun partner he meets every second weekend to do nice things with. He will continue to look forward to your weekends together. You don’t transform into his nurse or his counselor.
If he doesn’t quit the rudeness towards you, remember that you are not obliged to stay in the relationship until he dies. You really aren’t.

Im sorry op
it like your dreams and future have been very cruelly snatched away
So it’s awful for him , as he faces this decline
But also you

I’d second getting a support group

and also you are grieving and don’t underestimate that ❤️‍🩹

And what coco said is spot on

That sounds really hard. Does he have family?
You don’t have to become his nurse. I’m not sure I would for a short term boyfriend with a degenerative brain illness. Things are likely to get very bad and you have no official standing -eg you’re not next of kin to deal with doctors. Sorry if that’s harsh and I’m sure others would judge me for walking away, I’m just being honest though.

Hello I am sorry your partner and yourself are going through this.
It's good that you are able to see a councillor and feel you are getting something out of it , but may I ask , does your partner have someone away from the family to also speak to ?
I ask this because I trained with my local hospice as a bereavement councillor , and imagined myself going to see people who had recently lost a loved one.
But in reality , it was 50/50 , as I was also seeing the person who was terminal.
Before the training , I'd ( wrongly ) assumed bereavement counselling is for those suffering a loss.
In fact the person dying is also bereaved , in the loss of their life not lived , the thoughts of leaving loved ones , the loss of experiences not fulfilled , the loss of time and many more . Often they don't want to share those thoughts with the loved ones around them .
I visited a man who was dying of cancer , he had a wife and grown children so plenty of people around him, but we sat once a week for an hour or two , and he told me , a complete stranger , his life story , including all the bad bits , and the times when he felt he had done wrong or made mistakes in his life. I guess he just felt the need to unburden himself.
Your dp might not want that yet , or he might not feel he has anything to say but sometimes a person just turning up once or twice to talk , even if it's about the weather , or his hobby might encourage him to open up about the things that worry him the most.

I'm in a similar position, and still trying to reconcile all the changes in his declining health and moods.

It's very draining being a sounding board, and not necessarily getting that parity of support you normally have from a partner, so it's really important you get that support from somewhere.

What a tragedy. Of course he will be irritable, he’s had the worst news ever. I honestly think that as your relationship is new and sounds low key, you should consider ending it as it sounds as though you’re still expecting things to be the same. I understand it’s overwhelming but right now, you’d have to support him and not be looking for romance.

Ended too soon. If you can’t be there for him, it will only hurt you both as he can’t be what you want and you sound as though you’re frustrated with him. It’s not his fault so if you can’t cope with it there is only one option. He doesn’t need extra demands.Perhaps can stay friends.

Sorry to hear your boyfriend has had such a terrible diagnosis and prognosis. BUT... it is him who going to die and it feels like you are just seeing how this affects you.

These two comments stand out

I feel like I'm turning into his nurse rather than his partner

don't live together and see each other every weekend

How do you feel like his nurse when seeing him so infrequently? Use your time together to do fun stuff and leave the nursing to those appointed to provide his care.

That is awful. I don’t know what I would do but maybe encourage him to do a bucket list?

I am in a similar position in a very long marriage. My heart goes out to you.

I have given this a lot of thought over the last few years of change, and especially over the recent few months of serious deterioration and huge changes in quality of life, or any sort of living.

I have realised that, for me, learning to be my own best friend, soulmate, lover, companion, deep-down trusted friend who's courage and resilience is awesome, is helping me to navigate this dreadful new landscape. I am proud of my resilience and strength and proud of how I am coping. I can do this, and so can you.

This trust in myself, acknowledging how strong I can be, will eventually support me in a new uncertain future.

It is also guiding me to a deep-felt awareness that I will be OK on my own, when the time comes.

Be your own best friend and you will be fine too.