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Reply by marstin

10 Oct 2013, 3:33 PM

Hi Bizzy,

I cannot understand the cruelty of some people. I have learned on this journey that there are certain people who need to be blocked from your life. For myself it's my brother who is only capable of taking nasty jabs at Len (who sneers at a deceased person?)and looks down on my life like it's so pathetic. Because of this I have dealt with alot of pain but also learned so much and have to tell myself that I am doing the best that I can and that these people have not walked in my shoes nor do they bring any support. Walk away my friend, you do not deserve ANYONE'S judgement!

As caregivers we do what we can do and are not superhumans although we try to be. We are not educated in any of this. I remember Len having a major fall in the middle of the night and it wasn't until morning that I found him back in bed with cuts and bruises all over him. He had used an extra pain patch in the middle of the night then tried to get to the bathroom. Back to the hospital he went until they could balance the meds and ease the pain. It's so frightening. Even worse is the physical deterioration. I remember how Len always wanted a massage and how difficult it was to do because he was nothing but skin and bones. The refusal of food or water is normal near the end, the body doesn't need it anymore. I know how difficult this is to deal with. His need to stand is out of your control and the fact that you sleep when the nurse comes is what you need to do. There are no rights or wrongs in all of this, you have to give to yourself too to be able to survive it all.

I too had made the decision to put Len in hospice as his illness progressed. Fortunately? He passed away before we made that move. He got his wish to pass away at home but it was a very difficult thing for my daughters and myself to deal with. Those who have never walked this path can't even begin to understand how painful this is. You are an incredible person for taking this on like you have.

Hugs,
Tracie

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Reply by Bizzy

11 Oct 2013, 10:17 AM

Thank you Tian and Tracie especially for your perspective on what was said to me. It really helped light the way for me me to see through the shock of it all and get back in balance.

Yes, the physical deterioration is really hard to witness. The rib cage and spine sticking out, the cuts and bruises and bumps,unusual swellings and limited breathing and eating functions . Its such a perversity of nature, such an injustice to the body.
I took my partner to the hospital today. They think he has pneumonia and that he is overmedicated. They admitted him and I am just getting home now. They said he is on too many sedative medications and that is suppressing his respiratory system and might be the reason for his sleepiness. Its been such a roller coaster. I thought he was on his way to dying and they are saying "wait, maybe he just needs a tuneup". Just when I think things are happening one way I find out it might not be so. Incredible how life is twisting and turning in all directions.
I feel a sense of relief that he is safely in hospital in good hands. I'm going to have a good sleep tonight.

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Reply by Tian

11 Oct 2013, 11:12 AM

Some relief at last. I hope you are still capable of having pleasant dreams. All you can expect is the unexpected but you've demonstrated a great ability in dealing with that. The journey continues.

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Reply by marstin

11 Oct 2013, 4:46 PM

I hope you had a restful, much needed sleep. At least for now he is in the hands of professionals and hopefully they can bring him some relief. This journey certainly does spin you in many directions.

Please make sure they get it 'right' if they consider releasing him. I relive the last time that Len was sent home from the hospital and how wrong things went. For him they got his medication balanced enough that he could have been released. He had been home on a few day passes and we were able to successfully administer the drugs. He made them promise that he would be clear headed because he had paperwork to get in order and they promised that they wouldn't release him until the pain was minimal and he was clear headed. For some reason unknown to us (I believe it was a shortage of the medication) they decided they wouldn't release him until they switched him over to Methadone. He fought them on this as he was 16 years sober and knew the side effects of Methadone by witnessing many who were on it. They would not back down. It was frightening. It took time and many conversations with the head nurse to to get them to back off on the dosage. After all, being clear headed was the promise made. It was crucial that he could think. Still not very close to the goal, he was told he could come home on a day pass for Father's day. When we went to pick him up, the weekend nurse came in with a bunch of prescriptions and said that he was free to go and that they would hold his bed until Tuesday and if he didn't return then, they would give his bed away. What?! Of course he was thrilled and we were in shock. We were not at all prepared for this. He was not clear headed at all. Anyway, long story but of course he had no intention of going back and was unable to focus on the paperwork that needed to be taken care of no matter how hard he tried. When he was near the end and could no longer take the medication, they switched him back to the original medication that needed to be injected. Unbelievable.

Anyway, the reason I tell you this is please be sure that they get it right if they are considering sending him home. I know how exhausted you are and how badly we want to trust in the medical system but sometimes they get things wrong. I still feel the sadness in how badly things went for us and worry about how many others have gone down this path when they are at their most vulnerable.

Many hugs to you,
Tracie

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Reply by Bizzy

13 Oct 2013, 8:28 AM

Things have moved very fast. On Thursday he was talking and lucid. On Friday he was less lucid and talked very little. Today he is not talking unless forced and he is asleep always unless forced to wake up and then only awake for a few seconds. He is not eating or drinking. I have requested transfer to hospice. They said it will take a few days. He is off most of his medications and they are monitoring his pain levels closely.
I am surprised at how okay I am. Everything feels otherworldly right now and that's scary but overall I'm okay.

I don't think he's coming back home.

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Reply by Tian

13 Oct 2013, 12:25 PM

Dear Bizzy

As a volunteer in a palliative care ward I have seen that things can move very fast. Families of patients and patients themselves have told me that they were coping fairly well at home until a rapid deterioration forced them to come to the ward. And, after their admission, I have seen patients who have been fairly stable who have passed away when I looked forward to seeing them again and on the other hand there have been patients who have been at death's door who have been able to hang on longer than expected. And I've seen doctors and nurses also be surprised in this way. Until right to the end it's impossible to know how much time is left. But you may well be right that your partner won't be returning home. I am gladdened that you are OK as this latest turn has occurred. I think you can take solace in knowing that your partner is not suffering when he is sleeping and he will soon be going to a facility whose purpose is to make him comfortable. Hopefully things are feeling otherworldly right now because things are happening as you actually anticipated. But as I said before the unexpected is always looming.

Thank you for keeping us updated and we are certainly interested in how things unfold. Take care.

Tian

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Reply by marstin

13 Oct 2013, 3:17 PM

Hi Bizzy,

I think we sometimes feel like we're on the outside looking into a giant bubble and become almost emotionless as this transition takes place. I would guess that it is our mind's protective mode and also a part of the grieving process that brings us to a place of acceptance. You have worked so hard to keep him safe and comfortable and now you are able to hand over the reins. There is no more that you can do other than be there.

I hope that you are taking time to care for yourself as we can so easily become so lost in all of this that we forget that we even exist.

Hugs,
Tracie

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Reply by NatR

13 Oct 2013, 6:04 PM

Dear Bizzy

my thoughts are with you
let others take on some of your care and let go
its time for you to take care of yourself

i agree. With the other responses - you are overwhelmed, dealing with acceptance and shock.

you have support, you have done a wonderful job for your partner
wishing you some peace and a feeling of being surrounded by supportive staff, and those on the forum.
my thoughts are with you
sincerely,
NatR hugs

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Reply by Bizzy

17 Oct 2013, 7:41 AM

My partner passed away on Tuesday afternoon. It was fast and very gentle. The medication they give kept him calm and relaxed. I am grateful for that since he thrashed about and panicked when the medication wore off once. That was the only alarming time I had.
My mother, his father and a family friend were with us throughout the time. 7 days have never passed so fast in my life. I'm in so much pain trying to draw comfort from the familar objects around me that remind me of him and from the gutwrenching anguish that comes from knowing he's not the objects and he's not here. Not ever going to be here again. Its overwhelming to try to wrap my brain around this.

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Reply by Tian

17 Oct 2013, 12:00 PM

Dear Bizzy

My sincere condolences on the passing of your partner. I think one can never be truly prepared for the death of a loved one and you have endured more than your share of jolts and senselessness. But I stand in awe of how you have dealt with it all. I cannot emphasize enough how fortunate your partner was to have you there for him. But now he is gone, the void seems irreparable. You've entered a new phase in your life now, another one filled with great difficulty. You have a lot of grieving to do. But from what you've shown us I believe that you will be able to rebuild your life. I don't know how, it will be a neverending process but you will manage. After the mourning...

We're still here for you Bizzy. You continue to be welcome here to let us know what's going on. The journey continues.

Tian

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