A slow decline [Archive]

Tink

31-07-2011, 01:51 AM

Part of me has been wanting to bring this up, part of me has been avoiding it. But K's health is declining.

I avoid talking to people besides his family lately because it is exhausting answering eveyone else's questions/concerns. And while I know they mean well, pushing the bright side or trying to fix things isn't really what I want/need.

His 'Giant Cell Arteritis' is a condition that doesn't go away and all you can do is treat things as it attacks different areas of your body. It not only attacks arteries but spreads to lungs, intestines, whatever. All you can do is surgery to fix/remove areas affected. And without continuing extensive surgeries prognosis is poor.

One of K's chronic complications of this disease is chronic infections. You all remember he almost died several times because of this.

K is at the point of refusing any radical intervention or medical procedures/surgeries. He's gotten so fed up with the misery, it's just not worth it to him to go through this to extend his life a little while his quality of life right now is already so poor. He'd rather die at home than in a hospital.

While this is so painful to accept, we have to respect his wishes. It is his body and his life and he has to live through the pain, not us. Our roles have switched now to emotional support. I am the front lines as I am with him 24/7 and get a front row seat. I am slowly watching him die.

Fairly certain another infection has come on as he's been running a fever. Had trouble digesting food the last month and can barely walk with a cane. One of his legs are cold and losing use from the knee down. He has trouble catching his breath. Very painful legs, only okay position is lying flat.

Really I have accepted he will die already...logically anyway.
I can't explain what it is like to live with him right now and all the emotions.

The way I get through it right now is to plan ahead. Making arrangements for future keeps me from my feelings for too long. But I know I'll have to deal with them eventually.

Kazz

31-07-2011, 04:11 AM

Tink I popped on here because I was unable to sleep and saw this thread, I almost did not reply because I had no idea what to say but here I am back again.:bighug:

Because the position you are in is the least enviable in the World. Although K is the one who is in pain, fear, confusion and Lord knows what else. Its you who needs the hug, being in the "front line" as you put it a terrifying, stomach churning ride.

I think we as a society find death a taboo subject one I think we run/hide from because it is the one thing that is inevitable. We spend a great deal of of time trying to forget that and convincing ourselves we will live forever. However this is a big tap on the shoulder for all concerned and especially K.

You have accepted his death logically - that a self defence mechanism Tto protect yourself? self preservation is a strong reaction, you know you need to be strong and cope and the only way to do that is to "protect your heart with your head".

I do hope you realise that here is a safe place, and even if you do not post anymore or every moment we will be with you. Honestly there is normaly someone here most hours, I mean look at me ;)
Death is a lonely journey; one no one can make for you but one you can walk alongside remember the poem I think it is called "footsteps in the sand" I think this is very apt in your situation as at times you will carry K and at times he will carry you, times when both of you will march on and maybe there will be moments when you both need carrying and I hope we here at catsey can be a small island of "something" for you when you need it. A place where you can find "normality" when it is needed. Sometimes not crossing the road is the thing to do and you are doing that for K we will try to do the same for you in a much smaller way.

So here we are ready to listen, if needed but basically here.

Tink

31-07-2011, 05:47 AM

Thanks, Kazz. Appreciate it. And I will take that hug!

In a way I feel like I am detaching myself. Sometimes I feel very strongly, sometimes I am numb, and sometimes I am pushing things down.

Me and his family agonized forever about how to handle this. None of us want to have regrets. I think I'd regret it more if I dragged him to another painful procedure and fought with him the whole time and then he died instead of accepting his decision and him dying at home.

I have never lost a person close to me before. Animals, yes. People..well I have seen people die, I have attended funerals. Was I very close to any of them? No.

I am wondering about logistics. Will I go to bed one night with a warm body and wake up to a stiff and cold corpse? Will he struggle in agony or will it be quick? At what point do I call 911?

And this is the worst, most horrible part. An evil part of me wants it to be over with already. I want to press Fast Forward and skip the middle part.

I already know where I will look first for rentals, how much money to keep aside, how I'll handle the animals, how me and his family will handle his possesions.
What I don't know is what to do with myself right now.

Velvet

31-07-2011, 06:08 AM

You take one day at a time, you never look further than that, if you do the future stretches out endlessly with lots and lots of "ifs", so "turn those thoughts off". You take the day that comes & deal with it. My position is different but its how i cope & so far its worked. At times you will feel you are functioning on automatic pilot

I wont say too much lest i sound gloomy & that would never do. Sufficient to say, massive hugs sent your way xxx

PS i cant sleep either

PoshPuss

31-07-2011, 08:28 AM

Tink, I can't add any more to what Velvet and Kazz have already said. I thought about what you are facing now, in the early days after Ceri's stroke; the pain of that time, even now, is agony to remember. So all I can do is send my love. Will be here for you on Catsey, always :hug:

pamela81

31-07-2011, 09:24 AM

Tink, i have no idea what to say except that i also cannot add to what everyone else has said.

Thoughts are with you and your family and send my love to you aswell xx

Kim

31-07-2011, 09:39 AM

What an agonising situation for you to be in. I worked in palliative care for 4 years and watched people in your situation. :( grab whatever support you can, take each day at a time and say all the things you want to say to K. I will be thinking of you. (((hugs)))

angieh

31-07-2011, 11:39 AM

I really can't add to what's already been said Tink. I hope you know that this little Catsey community will always be here for you. Don't doubt that. ((((BIG HUGS))))

lynz85

31-07-2011, 12:19 PM

oh gosh, i had no idea at all. its hard to try to add anymore that hasnt been said, it must be hard for everyone involved, you, K and his family. i would agree that it is a case of taking a day as it comes, i have lost a very close family member before, but that was sudden. i dont know how worse it would have been if we had known what was to happen and try to get through each day knowing so. sending you and K all my love, keep strong and know that we are here for you whenever you need us.

Elaine

31-07-2011, 12:47 PM

Dear god Tink, I am so sorry to be reading this and I really dont know what to say in all honesty but I think Kazz, Velvet and the others have covered things pretty well.
Dont lose sight of yourself through this painful and agonising time, you are equally as important as everything else.
Sending lots of hugs xxx

Moli

31-07-2011, 01:39 PM

Not much to say, except my thoughts are with you and K.......xx

Mags

31-07-2011, 02:52 PM

What a heartbreaking situation you're in, Tink, I'm so sorry to hear this.

You must feel so alone facing this but as you can see from the above posts, we are all very concerned for both you and K.... we are your friends who want to support you, share your unhappiness and be here for you.

You are a very strong lady, you more than proved that to us when you supported K through his last serious illness. Take each day as it comes but make sure you don't neglect yourself - you need your love and strength to help K through this.

You and K are in my thoughts, sending love and hugs to you both xxx

Hreow

31-07-2011, 03:08 PM

You wouldn't be the first person sitting at a death bed and wishing it was just over... (and feeling bad about the wish) It's not evil, it's human and almost unavoidable. And you (I/we) don't really wish them dead, just for the two of you to finally have peace after a long and heartbreaking struggle to get to that point.

Hugs! and do please take care of *you* in all this. A bit of "selfish" me-time and a break is a necessity, not a crime nor a moral weakness.

dandysmom

31-07-2011, 03:37 PM

"And this is the worst, most horrible part. An evil part of me wants it to be over with already. I want to press Fast Forward and skip the middle part."

I was going to comment on this but Hreow just did it so well; when my Mom lay in a coma for three days before dying I had the same feeling, and the same shame at myself for having it. It is only human, please don't beat yourself up over it.

I too can't add anything to what's already been said so well. We are here for you. to listen and support. Stay strong, take care of yourself for your own sake and especially for K's. Mammoth (((hugs))).

pamela81

31-07-2011, 06:37 PM

[QUOTE=dandysmom;653553]"And this is the worst, most horrible part. An evil part of me wants it to be over with already. I want to press Fast Forward and skip the middle part."

This is definately the hardest part, i can sympathise with this as i watched my aunt laying in a hospital bed for just over 2weeks, a young woman of 62, dying due to poor circulation not healing a wound from a leg amputation just over 18month ago. She was on the pallitative care program which helped her but it was soo hard being there everyday and seeing her. But you need to try and be strong for you and K as hard as it is xx

Tink

31-07-2011, 07:36 PM

Thanks, everyone. Your words mean more than you know..

babycakes

01-08-2011, 08:27 AM

I also dont know what to say other than you are a very strong women who at times will feel almost like a lost child. But you will know what to o and when and if not just ask him, 'what do you want me to do'.
I think the others have given you good advice and I can only sending positive vibes and virtual hugs xx

Squirrel

01-08-2011, 08:50 AM

Having only just seen this I'm simply coming to top up the *hug* pile Tink. I think we've probably all been there in one way or another, or know the possibility that we'll be there at some point again.

The waiting period is hard, cause much as you'll grieve, and it will be hard, you're doing that already, and you can't go through the whole process while they are still with you, so it's like life is on hold. Until they go, you put your life on hold so to speak, because it's always uncertain just when they will do so. And it's horribly hard living with uncertainty. And the guilt is horrible for feelign that too, but oh so normal.

Thoughts are with you. *holds close* And mind, the hug pile is here, and will be topped up regularly with or without us posting to say so, for you to pick one up as and when required.

MrsH

01-08-2011, 12:33 PM

Oh Tink, I really can't think of anything to add. What a horrible place to be and how strong both of you are, and will have to be, facing the situation in this way.

:bighug: and :bighug:

I hope our thoughts and prayers help you in some small way.

alexgirl73

01-08-2011, 05:46 PM

Sending more ((hugs)) your way Tink. I have no idea what to say really, it has already been said much more eloquently by others. But I will be keeping you and K in my thoughts and prayers xxxx

paulinef2

01-08-2011, 08:27 PM

My thoughts are with you both, I lost my mum through a long illness and in some ways it was so long and others far, far too quick. Be kind to yourself x

Tink

14-08-2011, 12:17 AM

Update:

K's fever broke a bit back but his legs have steadily gotten worse. Very, very painful now..one has lost all color and warmth and stopped bending at the knee. He's only comfortable if lying flat. The pain is so bad he actually is talking about going to the ER, if only for pain relief it'd be about worth it at this point.
This may be a good thing in the long run as we've been trying to get him to go in so we can get the okay for palliative/hospice care to make him more comfortable.

Velvet

14-08-2011, 01:08 AM

My heart goes out to you both. It is so hard and awful to watch someone you love in such obvious discomfort.

Whatever you decide to do it will be the right decision.

Hugs xx

dandysmom

14-08-2011, 01:31 AM

Oh Tink! I hope you can get him in for pain relief/possible hospice, so hard for you and his parents, (((hugs))), be strong.

Tink

14-08-2011, 01:43 AM

Thanks guys. No idea when this will happen..he was talking Monday but really it's whenever he says "go" and away we go..

Another bad thing from this is I find myself furious with other people for complaining about things that are not life or death. It's probably not fair to them but my emotion right now is of the "How dare you??" variety.
It's all painfully in perspective for me right now and I'm afraid I'll be a bit cold to other people sometimes because I find it hard to feel sympathy about the little things.
Of course I'd probably be doing the same if I wasn't in this situation but fact is I am and I just get so easily frustrated.

We tried shopping last week and I saw people push past him while he was in the wheelchair..roll their eyes or cut in front of him in line. I wanted to scream and to hit them.

Mags

14-08-2011, 11:50 AM

So sorry to hear the pain has become almost intolerable for K, Tink. I hope you'll be able to get him some pain relief very soon to make him feel more comfortable.

This must be such a worrying time for you and I know you will do your best to stay strong for K.

*Hugs* to you, my thoughts are with you both ..... xx

angieh

14-08-2011, 11:51 AM

(((((HUGS))))) Tink. I can appreciate how you feel about the insensitivity of others, but think you just need to tell yourself that they can't possible know just how poorly K is, even though he's in his wheelchair. I agree that people can generally be unfeeling and dismissive too, but there is no way that a stranger can understand unless they took the time to find out how K or you are feeling. I remember getting cross with a fellow student years ago when he was rude to a deaf boy - I knew the boy was deaf, the other student didn't. Not the same thing, but just an illustration really that "others" don't actually know.

I do so hope that K decides that he does want to go to ER and gets pain relief at the very least.

Kazz

14-08-2011, 11:53 AM

Nothing to add to what has already been said but I do hope K accepts he needs the help. It must be hard to do so. And look afteryourself.

dandysmom

14-08-2011, 03:16 PM

I can't add anything either to what's already been said; I do hope he'll agree to go in for the pain relief, I'm awed at your strength at this awful time ...... (((hugs)))

pamela81

14-08-2011, 06:25 PM

im so sorry to hear things are getting worse for K, my thoughts are with you both xx

PoshPuss

14-08-2011, 07:39 PM

Tink I'm so sorry :( All I can do is pray hard for you and K and hope he finds solace from his pain soon. Stay Strong xx

lynz85

14-08-2011, 07:42 PM

hoping k can be made more comfortable, thinking of you's x x

MrsH

14-08-2011, 08:38 PM

Thinking of you both and hoping that K will go to ER and accept some pain relief. (((hugs))) to you both.

babycakes

14-08-2011, 09:21 PM

I hope he decides to get pain relief he shouldnt have to suffer.
As for your emotions Tink they are understandable we live in a very intolerant unsympathetic society that is selfish and unforgiving at times

alexgirl73

14-08-2011, 10:29 PM

I'm keeping you both in my thoughts and I hope K seeks the pain relief he needs. Sending ((hugs)) to both of you xx

Tink

15-08-2011, 02:22 AM

Thanks, everyone. ((group hug))

Velvet

15-08-2011, 03:52 AM

Sending absent healing xx

pinklizzy

15-08-2011, 09:09 AM

I know I haven't been around very much recently and I'm so sorry to read this Tink. Everyone has put it so much more eloquently than I could so I just wanted to give :bighug:

Phoenix

15-08-2011, 10:18 AM

I've only just seen this thread, haven't been around much lately, *******hugs******** to you both

truthisouthere

21-08-2011, 05:18 PM

So, so sorry to hear this..My thoughts and prayers are with you.

When this happens to someone you love dearly everyone else and their selfishness, their struggles, their ignorance, it just doesn't matter. It's like 'how can they be so happy when my world is crumbling?!!'..The pain and the 'why me, why him' anger of going though all that you are going through, it's like you're in a different world..I have a friend who is dying of cancer, but that's nothing like what you are going through right now..

It looks like the amazing amount of support on this forum sees a little inside your world, and is here to be there in it with you, or at least for you, for as long as you want and need it. A problem shared is a problem put in perspective and there are some really true people here on this forum to help you with that.

An additional and massive ((HUG))..

Manyana13

21-08-2011, 10:22 PM

Tink I am so sorry, I have only just seen your thread as have not been on here for a wee while. I am thinking of you, take care of yourself. I could not even begin to imagine what you are going through. Big big hugs to you from me and my creatures.x

Tink

21-08-2011, 10:48 PM

Mags

21-08-2011, 11:07 PM

thanks again, everyone.
if i don't update, it's because things are either fairly the same or so up and down that i have no idea what to say as far as his status. good days and bad days and sometimes it changes in itself several times through the course of one day. maddening.
We understand what you are going through Tink, no need for words ....... just remember we are thinking of you both *hugs* xx

dandysmom

22-08-2011, 01:56 AM

You both are in my prayers, Tink ......

Tink

25-08-2011, 07:10 AM

Update: We had a crap day in the ER on Monday morning. I really am beginning to loathe the hospital and the miscommunications in staff that cause patients and their families utter frustration. *end of rant* Just had to get that off my chest.

He needs more surgeries but there is only one he might possibly consider and that is the one to save his legs..aneurysms in both which is why the lack of circulation and pain.
He had had his fill for the day so we left and he signed an Against Medical Advice form because he just did not want to be admitted for more torture.
Came out and it was pouring down buckets and a horrid drive home.
His mum has been emailing, I think she wants to push for him to be more open to treatments and while that is understandable I am so done with this situation I'll just leave her to it..I'm too exhausted and I'm tired of being the one trying to get him to at least open up and talk. At this moment, I'd be quite happy to pretend nothing's wrong.

angieh

25-08-2011, 10:26 AM

Oh Lord Tink - not sure what to say. K's mum is desperate to try to get K to do anything that might save him, understandably. It doesn't help anyone that K can't talk about it, and his wishes, to someone who could help. Does the hospital have any patient counsellors or advocates or anything like that?

This is dire straights for you, I know. Virtual hugs is all I can offer and do so gladly.

Tink

25-08-2011, 02:51 PM

Thanks, Angie.
He actually pretty much knows he doesn't want 90% of what they've got to offer and the 10% he is interested in still has significant risks. I guess what I meant to say is I'm tired of being the voice of reason, trying to get him to open up to listening to more of treatment options before making such harsh decisions. The man shoots down anything to do with that before you've got it all out of your mouth. I just want to know he's making an educated decision. I will respect his wishes but I need to know he truly does understand. I know his Mum is pushing for more. I'm just so tired of being the one to communicate this for everyone and if they have their opinions I think they need to talk directly to him from now on. He's more likely to talk to me than family but I am just absolutely exhausted with it. I'm at the point of feeling like "Well, at least I know I tried my best" so when he's gone I won't be full of regret. I am the only one with access to the soft side of him so to speak; he hadn't communicated with his family for years till we started dating. But I can't take this. At least for now, I'm out of it. Maybe just a break or forever I don't know but I'm so tired of worrying and bringing up the difficult questions for everyone, K included. His family worries but they don't voice it directly to him, it's through me. I just feel a little angry, like everyone gets to carry on except for me. So I'm sitting this out, I'm spent.

angieh

25-08-2011, 03:00 PM

You are between a rock and a hard place, being a go-between.

Any chance you could get some respite care for him?

PoshPuss

25-08-2011, 03:02 PM

So sorry Tink, this is so exhausting for you. Do what ever saves your sanity and don't even think about recriminations. You have done and are doing all you can- time now to look after yourself. Wish I could say or do more but if being a sounding board is helping - feel free to express yourself. :)

Tink

25-08-2011, 03:06 PM

Thanks, guys. It is nice to just honestly say these things without worrying about hurting anybody's feelings or ruining relationships.

dandysmom

25-08-2011, 03:28 PM

Nothing I can say really, except I'm still praying, and sending (((hugs))); this is so hard and you've been incredibly strong.

Squirrel

25-08-2011, 06:03 PM

*holds close* Oh Tink... it's all so difficult for you - and it sounds like you've really been there, being strong for everyone. You're right - it's time for you to take a break.

*tops up the hug pile*

Phoenix

25-08-2011, 11:59 PM

***************Hugs*************************** Tink

Kim

26-08-2011, 11:15 AM

Kazz

26-08-2011, 03:51 PM

As above..............there are times you need to protect yourself.

Velvet

26-08-2011, 06:00 PM

Loving thoughts. x

Tink

27-08-2011, 02:06 AM

Thanks, everyone.
Broached the subject a lot more delicately to his parents and they've been very understanding so I'm happy about that, they took it very well.
In other news, my Dad's kidneys are going downhill despite his efforts. When will things be peaceful?

truthisouthere

29-08-2011, 08:57 AM

Don't know what to say Tinks, ..except my thoughts and prayers are with you and your family at this difficult time.

It sounds like you've got a bit more support from his parents, good! That's a step forward. There's only so much even the strongest of person's can take

Tink

30-08-2011, 03:55 PM

They just took K away in an ambulance. He stopped breathing twice on me.

Squirrel

30-08-2011, 04:02 PM

Oh Tink. *hugs* Thoughts and prayers with you.

angieh

30-08-2011, 04:02 PM

Oh Tink - what can I say? I am so sorry. Loads of big hugs and thoughts with you and K.

Tink

30-08-2011, 04:38 PM

I am home waiting for an update as the hospital is closer to his Mum and there's no use me getting behind the wheel for a drive into the city while I'm still hopped up on adrenaline and haven't slept a wink. His mum and stepdad were meeting the ambulance at ER last i heard. i'm tending the house and animals till i get more news.

dandysmom

30-08-2011, 04:44 PM

Oh I'm so so sorry, wish I could be there to hug you; praying for the best outcome for him ..........

angieh

30-08-2011, 04:45 PM

Best place for you Tink ....... I hope you hear soon so you can decide whether to go or stay at home.

Tink

30-08-2011, 04:52 PM

Thanks, I'm having a bit of coffee as I think I might need it.
Not sure what to do with myself. Keep trying to think of all the things I longed for when I stayed by his side in hospital.
Shower-done
food-done
coffee-done
What else to do...
Think I'll be going either way it's just a matter of driving myself in or waiting for his stepdad to swing round and pick me up.

Tink

30-08-2011, 04:53 PM

His head went purple and his veins were bulging and his eyes roll back in his head and he'd moan while taking very labored breaths it was horrible. His back would arch and his arms curl in on themselves, it was horrific.

Tink

30-08-2011, 04:53 PM

oh and his blood pressure was 78/40 when they took him away... :(
Feel like i'm going to throw up.

dandysmom

30-08-2011, 04:57 PM

Please don't drive, you are too upset, understandably, wait for his stepdad for the ride ..... please

Kazz

30-08-2011, 05:09 PM

Can you not get a cab or a friend to take you in you cannot drive yourself.

Tink

30-08-2011, 05:18 PM

He died....

angieh

30-08-2011, 05:37 PM

Tink .................. very large hugs and so on. I am so very sorry xxx

Squirrel

30-08-2011, 06:02 PM

Oh Tink... That's hard. Even if you knew it might be coming, and that it means that K doesn't have to go through lengthy recovery processes and the like, it's hard. As much as you were able to try to prepare yourself... *hugs* thoughts with you.

dandysmom

30-08-2011, 06:02 PM

Oh Tink ......... I am so so sorry

Kim

30-08-2011, 06:03 PM

So very sorry Tink. ((hugs)) xxx

Kazz

30-08-2011, 06:19 PM

I am so very sorry.

Mags

30-08-2011, 06:22 PM

Oh Tink..... I am so, so, very sorry.

Comforting *hugs* to you dear Tink, my heartfelt thoughts are with you... xxx

MrsH

30-08-2011, 06:38 PM

I'm so very sorry Tink, what a dreadfully hard battle you've both been through. I'm so sorry it ended this way.

lynz85

30-08-2011, 06:40 PM

oh tink, i am so sorry.

all my love and thoughts with you and K's family x x x

pamela81

30-08-2011, 07:33 PM

im soo sorry to hear your sad news tink, my thoughts and love are with you all at this sad time xxx

Velvet

30-08-2011, 11:02 PM

Oh Tink, we are so so sorry, its so hard on those left to carry on.......

Loving thoughts to you & family circle & to your dad too xx

Annestaff

31-08-2011, 07:19 AM

So very sorry Tink :(

Thoughts are with you and the family x

truthisouthere

31-08-2011, 10:13 AM

Tink

31-08-2011, 06:03 PM

Tink words fail us all at a time like this they seem grossly inadequate and meaningless, but the support behind them is like a sheltering tree...

Pamela81 has started a thread on catsey for all who want to offer their thoughts and support Tink. Read it and know that you are very much in our thoughts at this time, use it as a sounding off board, or just read it quietly and know that we are here for you ...

xxx

Thank you so much..all of you. I hope it's not to come off wrong but I do love you all for all your support throughout everything...in so many ways you've been there for me. It means so very much, I hope you all know that.