A slow decline

[Tink]

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]

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.

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]

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]

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]

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

[pamela81]

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]

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]

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]

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]

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