Hello everyone,It has been a tough week. He has been in the hospital and I have been staying there to take care of him. One night the pain was so bad he was shaking and sweating, with tears rolling down his face and the nurse said no you still have 18 minutes to go and wouldn't give it to him.
I was beside myself. I finally went out there and said very quietly,look I am not watching my husband cry! Call the $^& dam Dr. NOW.
And I am not leaving this station until you do that! She finally did give him a shot, she had let him miss 2 doses which is why he was in this much agony in the first place..........I then knew I had to keep track of all his meds and when or if he got it.
Word got round and the next day everything changed and he got it as needed and I saw to it it was given on time.
I finally brought him home this afternoon. Hospice will be coming out and helping us.
It is so hard, they say 2 weeks and he is thinking he has a lot more time...........he asked me if anyone told me a time frame, I lied and said no.........I know if I told him it would not be good for him. I think he will become aware himself as he feels worse. I don't know if what I do is right or not, never been through something like this before.
One thing that worries me is I can't seem to remember anything or be able to make decisions or do things. I start something and then forget what I am doing.
If someone is nice or sympathetic to me I end up in a flood of tears. Hospice was trying to get me to sign a do not resusitate order in front of Larry and I finally broke down and said "look I can't do this right now"! How could I say I didn't want them to try and save him?
well again thank you for all your support and prayers
All of my time is taken up right now so if you have contacted me and I havn't gotten back to you, I am sorry. It just seems like time is speeding by.
Love you all,
Bonnie
reading this post brought back so many memories. bonnie, good for you insisting on pain meds! i only had to do that one time and i made sure the nurses knew if i had to do it a second time, it wouldn't be pretty. there is NO excuse good enough for a terminal patient to be in pain. overdosing and "addiction" are NOT issues here. the most important thing is keeping larry pain free.
i can't even count the times i lied to gary during that last 3 weeks. i saw no point in telling him he was dying. you do what you think you need to do to keep larry's spirits up. God will forgive a few little lies. when we brought gary home from the hospital, he wanted to sit in his recliner a few times. i had to wrap a sheet around him to restrain him because he would try to get up and i knew he could not. i lied and told him it was to keep his chest warm. he knew no different. *sigh*
get a little pad of paper and keep handy. i had so many things written down and was able to check them off as i did them. honey, there were days when i completely forgot to go to the bathroom! your mind will become mush and that is to be expected. it will STAY mush for a while and that's normal, too. i think it is our brain's way of helping us cope with the unthinkable. when you think of a question, jot it down immediately. i left room to write down answers, too, because i knew i would not remember what i was told.
one of the first things hospice had me do was sign a DNR. at the time, i felt like i was giving up but then when i thought about it, there was really nothing to give up on. he was dying, i knew that, and to try to bring him back would be fruitless.
the hospice people are angels. i do not know how i ever could have brought gary home were it not for our hospice nurses. they treated us like family and we grew to love them dearly. there will come a time, most likely, when larry will become oblivious to his surroundings. just because he doesn't seem to know what is happening or who is in the room with him doesn't mean you shouldn't talk to him. i talked to gary right up to the end. one-sided conversations, of course, but if there was even a tiny chance that he could hear me, i wanted him to know everything that was going on. our nurses told us that the sense of hearing is the last to leave and that we should talk to him as much and as often as we could. poor gary, he probably got tired of my babbling!
don't be afraid to cry when you are with him. you can't expect to be strong and stoic every minute. it's ok to break down, it's ok to let him know how sad you will be to lose him. while he is still lucid, tell him EVERYTHING you want him to know. i did not want gary to become comatose before i was able to tell him how much i loved him and how our 11 years were the best years of my life. i talked a lot about distant memories, things that made us smile and laugh. he was too weak to talk back but i know he heard everything i said to him because i saw him smile and occasionally, i saw a tear roll down his cheek.
toward the end, gary began "seeing" loved ones who had preceded him in death. he once opened his eyes and shouted "joey!!!" he saw his beloved nephew who died 10 years ago. i told gary to look for a guy with salt & pepper hair and a crooked nose, that would be my dad who gary never met.
not always but sometimes a terminal patient will get combative, especially toward the end. there were a few times when gary thought i was doing things that made him angry. once, he accused me of withholding water from him. he could not hold a glass himself, he was too weak, but he did not realize it. i finally gave him an empty styro cup to hold and that satisfied him. i knew that when those things were happening, he was not aware of what he was saying. if this becomes a problem, ask hospice to prescribe a sedative for larry. although i hated to do it, i had to sedate gary 2 or 3 times because, even though he was weak, i could not have kept him from climbing out of the bed when he became agitated. if larry says hurtful things to you, pay no attention. he won't realize what he is saying and he does not intend to hurt your feelings.
lastly, before larry becomes unresponsive, let him know you want to be with him when his time comes. it took me days to come to terms with it but several days before gary died and while he was still able to understand me, i told him i wanted to be with him, that i wanted him to go from my arms to God's arms. i gave him every chance to die without me there but it was obvious to me, after the fact, that he wanted me there. his last night on earth, i was so exhausted that when i pulled my chair up next to his bed and laid my head on his pillow, i went sound asleep holding his hand. he had been gone about 20 minutes when his mom woke me to tell me it was over. i have a vision of gary floating above the bed and thinking that yes, this would be a good time for me to go, she is at my side, touching me, but she is asleep and i can spare her the pain of watching me take my last breath. it was as peaceful an ending as i could have hoped for, no pain, no panic, he simply slipped away from me. to this day, i feel a closer connection because i was able to hold his hand when he left this world.
i hope this doesn't make you sadder but then, i know you can't BE any sadder. i just wanted you to know a little of what you might expect. i won't tell you to be strong because i know how awful it is for you right now. i won't tell you that it'll get better for you because i know you won't believe that. i won't tell you that watching larry die will be anything other than agony because it won't be. i will tell you that i would be honored to be able to be a shoulder to cry on and you can call me any time, day or night.
God bless you, bonnie. you have my admiration for taking good care of your man. as it was for me, it will be your last act of love for larry to be able to make his passing a peaceful one.
