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How

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#1
How am I meant to do this?

Watch her die?

See her pain?

Feel her anxiety?

How can I say it'll all be okay when I know it won't?

How do I console? What can I say to help?

How do I keep my patience intact and not get frustrated with this disease?

How can I explain to her that my anger is fear realized?

How do I do this? How am I going to do this?

And how am I going to go on?
 

Sadeyes

Staff Alumni
#2
I am so sorry...it sounds like a loved one of yours is dying (please excuse me if you have posted about this)...know you can vent your frustrations here...many of us have gone through this and fully understand the pain and frustration...please PM me if you would like a place to express these feelings...big hugs, J
 
#3
Thank you Sadeyes -

It is so frustrating as we have no control.

No power to change the outcome.

Simply helpless.

Is it okay to lie when you are asked if they will be okay?

What is the point of going into detail about how they will deteriorate?

How do you ask someone what they want for their funeral?

I am unsure how I will get through this, how I will stay strong as everyone insists I should be, and how I will continue.
 
#4
Tonight is bad.

I hate this. I have to try and remain composed but its so hard.

Is this really the beginning if the end? What am I going to do ?
 

icequeen

Well-Known Member
#5
you struck a chord with me, as this is v similar to what i have been through, its v v hard on everyone, not just the sick person.

you do what you have to do to make them feel better, even if that means lying to them, give them love and support. some would say that is cruel to lie to them but i dont believe that, they are obviously suffering why add to that, talk about good things...give them happy memories and smiles to take away with them.

what ever you do you will wish you had done different so make the remainder of their time happy, keep your head up, bite your lip and cry when you are alone and they dont know. it will not be an easy journey and you can only do your best. hang on in there. :console:
 
#6
ice queen -

thank you for understanding where I'm coming from. I'm sorry you had to go through something similar.

Am very scared today. In the space of a few days to go from fine to being unable to walk etc., its sad.

I am trying to be strong as everyone tells me to be. Why can't people be strong for me too? Help me out? I'm sorry, I am tired and upset.

Thanks for posting, take care.
 

icequeen

Well-Known Member
#7
MoAnamCara, i was forever told to be strong...and i guess i was for 10 years of this...and when the end came for him, the sh*t hit the fan for me...

i think peeps say be strong because they dont really know what else to say...they dont mean to belittle your situation but cant truly understand how its affecting you but are trying to support you. you need to try and look after yourself a little too, even if its not easy to do so otherwise you will suffer that little bit more without even knowing it when things reach the ultimate conclusion.

its really really hard to watch someone suffer, i learnt to detach from my feelings without realising to enable me to keep going it was so unreal but at the time it got me through. no one can really tell you how to feel or what to do but some of us can understand how you feel and hopefully support you.

cry alone when you need to, shout and scream at the wall when you can, i couldnt leave house for many years, but if you can go for massage do it...on the assumption you are 24/7 carer just try and take at least 1 hr a day for yourself to do what you enjoy. no one will think badly of you. these are luxuries i didnt have so burned out...please dont let happen to you if you can avoid it...its not selfish, its self preservation. am always here if you need to vent. most important thing i can say to you is "Dont Feel Guilty" :console:
 
#9
Tears tonight... Each trying to maintain composure, show strength and keep up the acting but failing every once in a while when reality hits.

So sad, don't know how I can do this
 

icequeen

Well-Known Member
#10
hope you feeling a little easier today...you are allowed your ups and downs...you are human not superhuman...if you can be safe and the person you care for safe...get drunk! not really conventional advice but sometimes it helps, wish i was able to...but a quick walk or scream will help calm you down a bit, or so i am told..thinking of you :flowers:
 
#11
Thank you SO much icequeen for thinking of me.

I'm hanging in there by a thread, but at least its a thread!

Yes I agree re walking and getting outdoors and I try to escape if I can even if its for 15 minutes right now.. just to breath and notice the little things out there to distract myself and the mind.

please take care, thanks again. hugs.
 
#13
Thank you also Sadeyes -

It is hard when the mind is fully there, yet the body fails. what do I say or explain or what can I say for comfort?

Helpless and sad and trying to hold it all together but its becoming more difficult.
 

icequeen

Well-Known Member
#14
hang in there Mo...i too am struggling tonight with issues i thought i had buried, but we have to keep fighting. you have done well to get this far and if i can do it so can you..feel free to pm me....i so want you to survive, caring is a 24/7 job and drain..no respite...pls pm if i can help you but in the meantime take care xx
 
#16
Buckets of guilt tonight.

For not doing enough. For losing patience. For not being the best I can. For wanting it to be over. For not wanting to be here. For wishing I had help. For feeling angry. For wanting to run away. For being sad. For being unable to control the tears. For wanting company and help. For wanting someone else to care. For thinking thoughts that would leave them on their own. For wondering how i'm going to do this.

For wanting some peace but knowing that the peace I seek will not come until things are over. What a price to pay for peace, and really, will that be peaceful then for me? Will I ever be content again?

Guilt for allowing myself to become this person. For allowing these weaknesses to show. Never have I allowed them to surface, always the strong person. I don't like being this way at all.

For my behavior. Enough said.

Just for me, completely me. Angry and tired.

I still don't know how. I just don't.
 

icequeen

Well-Known Member
#17
:hug: i will steal your guilt...its the worst emotion ever...and mostly undeserved...i wish i could warp you away to a good place for a few hours but that isnt going to happen.. 74 weeks this thursday and i am still in the same place i was then...you detach when you care and that proves to be prob afterwards as i have found out...so dont be surprised how your emotions will go up and down and in and out...remember...dont feel guilty...dont beat yourself up...u are doing what you can do...am always here...dont suffer alone...reach out...and :hug:
 

icequeen

Well-Known Member
#19
welcome back Mo... hope you feel a bit better for your break...

how are you coping at the mo? just remember to keep posting your frustrations, dont keep them inside..and remember no matter what you are doing a great job! hang in there xxx
 
#20
:hug: Thank you AGAIN Icequeen

I'm doing. Having difficulties communicating re what the docs said and things. Its awful hard. Am hoping a social worker will visit this week, theres a lot of denial going on. Had upsetting weekend with trying to discuss thing and not seeing eye to eye. We were never like this, were always on the same page and if not, well that was okay too - but there was always a respectful understanding and acceptance of differences. Now it appears I am at fault for discussing death and disease and a whole host of other things.

Anger, they say, is fear realized. There is quite a lot of anger and frustration currently.

It always seems like those closest to us can hurt us the deepest. I wish, truly wish, we could have "us" back.

I hope you are doing okay, take care,

Thanks again.
 
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