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to make a long story short...

hopsice has not been as involved as I thought they would be...

now on top of everything... my husband has started declining rapidly...

they have suggested palliative sedation....they want to start it tonight...as hard as this is..it needs to be done...he is having respitory problems etc etc..I know it is the right thing...he looked so bad last night though I was hoping he would pass BEFORE this kind of thing had to happen...but alas no...

they will be here late this afternoon...anyway..I was told that they are going to TRY and get continuous care for me...but couldnt guarantee anything...and if they dont..I will have to administer some of his drugs and they are suppositories!

I am frustrated b/c here I am dealing with the inpending death of my 47 yr old husband seeing him wither away to a shell of what he used to be and listening to him suffering..and now I will have to deal with giving these drugs as well?? I have had hardly any sleep for 3 days and I have to deal with this stuff...I cant get my head around the fact that we are actively doing something that will take away his communication with us FOREVER!!! I realized the outcome is the same but....I didnt want to be making this kind of decision!!!...

I only have a few hours left "with him" and he is already mostly out of it...

oh and also... he cant swallow his meds now so he has not morphine in him except roxinol and I have been having to crush valuim to go with it...

we had to call the fire dept to get him in the bed...but there are no rails yet and he keeps fighting to get up...and he ALMOST can... I moved stuff away from the bed so if he managed to get up and fall he wouldnt hit his head... but anyway...

this is my last hours with him...when the nurse was here he was fighting with both of us about tryign to get up... so after that... the nurse LEFT me here alone with him!!!!!!!!!!!!!

he has since tried several times to get up...and it call ing now... I have to go....

I am so appalled at this whole thing!!!!!

I am also scared... please pray for him/us

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Cindy-

Not all hospices are created equal. If you are not happy with what you are getting complain to the supervisor. Feel free to open up the phone book and call another hospice that will provide what you need. You should be getting a hospital bed and his meds delivered quickly. You should not have to give him his meds, the schedule should be arranged around that. I am sorry for what you are going through. Please call and get what you need or tell them you will be going with another hospice (I hope that is an option in your area). Let us know how things go.

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I'm so sorry this is happening. Are they certain that sedation is the only answer? Can they not get a hospital bed delivered to you? What about liquid meds?

Our hospice facility worked much the same as yours. It was actually unheard of to have continuous care. They checked in 2 or 3 times a week for 30 minutes, aids came by for bathing and so on, but we were on our own the rest of the time. I administered most of Mom's meds during the time she was on hospice. That doesn't sound abnormal to me, but it sure can be a kick in the teeth if you're not expecting hospice to work that way.

I would definitely be concerned about them not providing medical needs for you though--as in liquid meds, hospital bed and equipment, etc. And... maybe someone else will have some input but I would question these palliative sedation measures as well. Why exactly do they feel this is necessary?

(((((hugs))))) to you. We're here for you to vent, cry, and lean on.

My prayers won't stop.

Val

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I'm so sorry.....I've been thinking of you every day - wondering how things were going, and how you're holding up....

I don't have much experience with Hospice, but something doesn't sound right.

Sounds like they are expecting you to do THEIR job, and that's just not right.

Can you call someone else? (another hospice?), Can he be hospitalized for this, so you don't have to try and get thru this alone???

It's just not right......

I'm holding your hand long distance. If there's anything at all I can do to help you, please let me know.

Love,

Nova

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I just thought of this...... When my Mom used Hospice for my step-dad, they had their own little ICU in a Hospice building. They were coming to take my step-dad to it in an ambulance, but he passed away before they could get him there.

My Mom couldn't lift and turn him, and they realized she couldn't care for him the way they could. Can you ask if they have similar facilities in your area?

At the one here, you can stay with them 24/7..they have extra beds in the room, meals available, etc. for the family members.

I'm so very, very sorry that you're having to go thru this.....

Nova

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Did they try to install a morphine

pump that would be the easiest way

for you to administer pain medication,

no worry it is all calculated that

so you can't give too much.

Ry had the right solution for

you, please call another place

for help.

Jackie

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Cindy,

I am also sorry that you are feeling so helpless right now and I wish that you had more help, just someone to be there with you. Unfortunately, I will tell you that I had many people around me when my mom was in her last days, but I still felt helpless most of the time. It is so scary. Do you have a friend or family member who can come to be with YOU right now? If so, call them. They would probably be happy to be able to help you in any way they can.

My hope is that in the weeks to come, you will know that you were able to do this and you will feel a sense of pride for doing such a tremendous job.

I send you my love and compassion for having to endure this. ((((((((((((Cindy))))))))))

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Snoopyfin,

Boy this is exactly where I was, I understand, and will tell you my experience, whether it be a help or not. My husband, Danny was exactly where you are talking about, hospice was here, and as on que, the weekend came and hospice is only on call, well they had me giving him sooo many meds, it was horrible, (yea, I know to keep him comfortable). But it was so hard that I got so stressed out, because he was getting so bad. Combative, restless, nasty, wanted to get out of the house, etc, etc. I just kept calling them to come. Period. They did and spent almost the whole weekend here till he finally passed on sunday night. I UNDERSTAND, trust me.If you need to talk, I will try to help you.

Mary

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the I understand hospice to work is they are there as supportive care as needed.... if you need a nurse there 24/7 because you cannot/willnot admin all his drugs then that is up to you to fund... I may be wrong but thats how I understood it.

if doing the meds due the indignaty of it is something that is bothering you, then you should look at it another way... would he rather you do those things to him or a stranger. if the stranger is the answer then a care facility may be the better place for him to be.

please dont take that offensively I know its hard to see the one you love suffer and try to hang on to your own emotions is not easy.

I hope you and your husband find peace soon...

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Cindy, I hold you in my heart. It just broke when I read this post and all you are going through. That's just not fair as you are not a nurse and to administer all this yourself has to be taking a tremendous toll on you.

It seems all hospice's are different. I have not had any experience with them. I know there are hospice facilities that he could be in and there they will take care of him.

I don't know if that could be an option at this time as it seems he is fading fast.

I pray for him to be a peace and for strength for you.

At least I hope that you can have someone with you to help you through this.

I am so sorry... this is so sad.

Maryanne :cry:

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I'm so late to this, but I am just so very sorry that you are going through this. My brothers and I opted to have LESS care from hospice. I honestly didn't care, but they wanted it to be just us caring for Mom at the end, like we had for years.

THERE ARE OTHER MED OPTIONS! They gave us a very potent liquid pain med at the end for Mom that was dropped into the lining of her cheek. It was absorbed through the cheek and she did not need a swallowing reflex to get relief. We administered this to her throughout the last hours of her life.

Lots of prayers for you.

Kelly

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Cindy,

I'm so sorry for where you are right now. When my Mom was at that stage, Hospice started 24 hour a day care. (standard procedure)I noticed where you live and my Mom was just a few miles from you in Buena Park. Our hospice provider was Vista something. I can look it up when I get home if you would like more info but your hospice provider can and should be doing more for you!!!!!

Prayers for you and your husband.

Patty

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thank you all so much...

it is all over though...

he passed away last night at 11:25...

it got worse before it got better...

they promised us a a pump by the end of the day Tuesday...but then they didnt do it and told me to up his valium! and tht the DR didnt think he was in pain that it was agitation!!!

so yesterday morning a nurse got there and heard him and said..

"he's not aggitated he's in pain! DUH!!!!!!!

to make a long story short...we called hospice dr again to see what was going on and that we wanted to know in one hour or else we were calling 911...

they called back about 1 hour later and said that nothing was going to be done till the Dr came out to see him after 3:00!!!!!!!!

so we called 911 and I reall didnt want to...I promised him he wouldnt have to go back to the hospital but was left with no other choice...

they stabalized him in 20 min.... then about 2:00 we talk to another hospice and within 90 min...their equipment was in our house and they worked it out with the old co to get theirs out...there was a dilatid pump that would be there by 8 and a nurse for the pump and an LVN for 24hr ctrical care and

it only makes me so sad that we didnt have them before....they did more in 90 min for me than I had gotten in a whole month with the other....

it didnt have to be like this!!!

anyway we stayed at the hospital (which was great about giving him pain meds and ativan) until everything was ready at the house... then we transported him back home... we knew it would be soon...and it was only about an hour later...I knew he was waiting to get home....the new hospice was so great to do all of that for us for only a couple of hours of time....

I am certainly going to write a letter to a medical board somewhere and file a formal complaint!!!

I told the new hospice people I didnt the memeories of my last hours with him to be of him in pain and screaming....and his last hours on earth to be so awful as well...he didnt deserve what they did to him!! he was dying for God sakes and they are spending two days to decide what medicine to give him!!!!!!!????? and they decided he wasnt in pain!!!

I was the one with him 24/7 for the past 4 months...I think I know what is going on...

plus... dont you think the first clue was he couldnt swallow his ms contin and it was 200mg... so all of the sudden they deemed that unnecessary??!!!

I did want to address a comment about giving it rectally... there was no indignity in my part..I am not sure that was what was inferred...but...

my husband was acutally a big guy even after the weight loss and by the time this happened he was almost dead weight...yesterday morning the lvn that was here AND my SIL who is also a nurse could barely turn him and on top of that he was in sooooo much pain they could only get one in...and that was after several tries... I dont mean to sound mean but...

how do you think I could have done that by myself??

I am not medically trained for one..and I have a herniated disc... if two trained nurses cant roll him over and get it in..how could I???

anyway...it was a long dy and I am trying to keep busy and not think about it too much..there is too much to do and call that need to be made..they are coming fo rthe equipment today and I will be getting a call from the mortuary about signing the papers...

It will be hard to go from being needed 24/7 to nothing...(other than "normal" life)

thanks again for your concerns...

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