Having a terrible time with hospice/UPDATE

[Budd]

I can not believe at a time like this that we are having such problems with hospice. It has been the worst 2 weeks of my life when Chris was discharged from the hospital on 3/30.

He was suppose to be on the Bridge program, half VNA half Hospice is what the social worker at the hospital told me. He comes home by ambulance, they think it's safer, so ok.

Not a call from the vna or hospice the day he's discharged. We have had vna since July so this was very unlike them.

OK, so now I had to figure out how to get him into bed from a wheelchair, took me an hour by myslef but I did it.

He's suppose to have a very modified PT, ok, we wait for them to call. They didn't. The vna intake worker came over on that Wednesday. Never heard anything back that day or the next, again, very weird. But the vna pt intake worker shows up on Thursday at 3, first thing I do is ask her to help me get Chris out of bed, at 3 in the afternoon because I wasn't able to to it myself this time.

I am now beyond belief that no services have started and "somewhat" losing it for the 1st time in a year.

She tells me there is no bridge program and I have to decide then and there between vna and hospice. So I decide on hospice after all the wonderful things I have read on this board. The worst decision I have made in a year.

Immeditatly they want to put him in a hospital bed, I have no problem with that but Chris does. He equates it to all his long hospital stays and death. So they suggest putting him in the recliner in the living room. Perfect! Little did I know that is where he would stay with no pt at all.

Have a great vna home health aide who washes, changes, feeds him, etc all in 45 minutes, she only asked me for help putting on the depends.

Ok, now we can't have her because she's vna and not hospice, even though they are the same agency, oops, different departments. So hospice will send the home health aide. I answer the door the next day and it's a 70 year old woman who complained the whole time she was here about him not being in a hospital bed. Had to take a break every 10 minutes because it's to much for her. Then calls the hopice nurse to complain he's not in a hospital bed. I of all people know it takes 2 to change his depends and I can't do it alone. I then asked the social worker for a younger aide. Can't do that until Monday.

Today I had my mental health day and Chris sister came in for me. Granny, the aide was back with the hospice nurse to help her. Now he has a bedsore they're blaming on me for not having him in a hospital bed.

Me, I say later to my sister in law, where is the pt we were promised so he could moved. He had pt the day he was released from the hospital but none since.

It just seems hospice put him in living room waiting to die. All he wants to do is stand and stretch his legs but he's so weak now he can't. I have spent the last 10 days totally stressing out over this.

They have no aide to help change him on the weekends or at night. And I can't do it alone at all. He is so humilated to be having his friends help me. So I've figured out that our hospice, for services is M-F 8am-5pm and heaven forbid you ask for anything off hours. I can have it as a private pay at $30 hour.

The reason is staffing, staffing, staffing. They told me last Friday they didn't think he would last until yesterday. I know that we are so close to the end, any day now, and I have spent all this time stressing out trying to get help from them.

Sorry this is so long, but I needed to vent, and you guys have the best ears around. A friend today mentioned going with another hospice service which I would gladly do. But after this agency, I am looking for referrals on the North Shore of Boston. So if anyone can recommed one, that would be great. Or I'm seriously thinking of going back to vna for the remaining time for acute care.

Like I said, Chris only has days left, but can't he die with some dignity, some support, and what little services he needs. I feel so bad for him and for me that we have to spend these last days stressing out on his care.

Thanks everyone so much for listening

Debbie

[Fay A.]

Debbie,

I am so sorry, but your experience is not unusual (unfortunately). I've made it clear to my family that I don't care if they all bail out on me, but there will be no Hospice in my future. Period. I know that there are some good programs out there, but I've heard of only a few, and I'm not going to deal with trying to find a "good one".

I hope that you will consider reporting the one you've been dealing with to whatever governmental agency (in Mass) oversees Hospice.

Once again, I am sorry. I wish we had the kind of support network set up so that we could all help one another through the rough times.

[stand4hope]

HORRORS upon HORRORS! How can this be? I am NEVER at a loss for words, but honestly can't think of anything to say. I'm just staring at the keyboard. I can tell you one thing, if I lived "North of Boston", I would be there to hug you until you fell asleep and got some much needed rest. I just prayed the simplest prayer: God, send her some some help - NOW - PLEASE!!

He's already there!

Much love and compassion,

Peggy

[Ry]

I am so sorry to hear you are having a bad experience with hospice. Make sure you complain, especially about the bed sore. It is hard to pick an agency without knowing someone that has used them or recommends them.

I don't know what to tell you except to get the Director of the Hospice on the phone and let them know what you think of the quality of care your husband is getting. Fire them and go back to the home care or switch hospice agencies. I am so sorry you have to go through this.

Rochelle

[TheresaKB]

Hello,

I am so sorry that you are going throug this horrible experience at the most difficult time of your life. Please know that I am praying for you and your husband.

Theresa

[DeanCarl]

Debbie,

Get on the phone .. go to the office .. do WHATEVER you have to do to get proper care. Be as loud and obnoxious as you need to be.

I feel bad because I'm one of the ones who has priased the hospice system on this board. But my experience has been just the opposit of yours. Good people, good (and APPROPRIATE) care.

Don't back down an inch with these people. It's their JOB to provide GOOD care to terminaly ill people.

Dean

[Angie Daughter of Bill]

I am so sorry that you are dealing with this. This just BURNS ME UP!! Call the person in charge of hospice. Let them know how unhappy you are. My uncle and my grandfather had hospice. It was nothing like you are describing. It was a God send for us. When my uncle was bedridden, the RN came out daily. The Aide came out twice each day to help us change him, turn him, etc. My uncle was about 6'5' and 230 lbs. We couldn't do it alone and we didn't have to. You shouldn't have to either. I hope you get some help soon.

Prayers for you and your hubby

Angie

[gerbil runner]

I am so sorry you and your husband are dealing with sub-standard care. Dean is right - the squeaky wheel gets the grease. Start taking names when you call people. Do you have insurance coverage? If so, call your company and complain.

I'd even go so far as to threaten a lawsuit for YOUR health being injured. Threaten to call the local news station.

This disease is bad enough without the problems you're having now.

[J.C.]

Debbie,

Sorry about your trouble with hospice care,

we had hospice care (Canada) for my husband and the

nurses were tops, also all the other workers, the bad

ones were the 2 doctors that did

not know a thing about cancer, so the trouble was on.

I reported all in writing, the writing went

far and corrected the situation for others.

When I saw the ignorance of the doctors, I spread the

bad news to all the other patients with cancer and now the

2 doctors are gone from hospice care, replaced by fully

trained doctors.

We were lucky that our family doctor kept an eye on my

husband during that time.

Talk clear and loud enough and follow it all by writing letters,

they are the only thing that will stay.

Hope the situation turns and that good help gets back to you.

J.C.

[cathy]

That is not right. You should not be going through all this. When we put my dad in hospice we were toldif we were not happy we could take him out of the program. Fortunately I have a friend who use to work for a hospice program and told me that the best ones to go through were recommended from the hospital..Their first question to me was what do you want for your dad? They were the most compassionate people I have ever met, although my dear father only lasted a couple hours into the program. I also had an aunt that was in hospice and they were wonderful as well.. One thing I remember about my dad was they told us if he ever made it home we were mostly responsible for his care. If I am not mistaken the hospital was not responsible for him once we put him in the program.. I am so sorry you have to go through this..

[Guest]

I also had terrible results with hospice. I was my mothers care giver

and in Dec. 02 her doctor suggested we call hospice in for help. The

first thing the nurse does is pump up her oxygen from 3 to 4 when

mom was doing ok at 3. Then she starts uping all her medicine double

to triple what the doctor ordered. My mom started talking out of her

head. The nurse said the cancer most likely spread to her brain lets

give her more ativan. The first of Jan.03 put her in hospice and said she

had 24 hours left she had brain cancer and was in a coma. I called my

sister home from Vegas and my brother in S.Carolina. My other brother

who happens to be a nurse and his wife started to figure things out that

mom was in a drug induced coma and started weaning her off the drugs.

mom came out of the coma and lived almost 3 more months and was

very happy to have those 3 months. She was alert and able to enjoy

three months with her family. Every time I would call hospice it took

them forever to get any help from them. Believe it or not mom was not

in alot of pain she was fine on tylenol 3 but hospice kept saying cancer

patients have to atleast be on vicodin or morphine. The nurse even

after all that happend would get mad if she was not pumping herself

full of meds. My brother also weaned the oxygen back to 3 and that

upset hospice alot. Then when the nurse doubled her on the ativan she

took the bottle from are home and when my brother asked to see the

bottle it was a mystery it suddenly could not be found. Then when mom

came home from hospice they put in her release papers that the ativan

was sent home with us. { not } I would never ever send another loved

one there. Opened my eyes and since have heard one horror story after

another. :-{ Haylee

[mhutch1366]

Debbie,

I feel horrible that you have this added to your grief right now.

I have heard good stories, now I'm hearing the horror stories.

I guess we as patients ALWAYS need a strong advocate who is proactive on our behalf. God help those without family or friends to fill this role!

I hope and pray you get help that is helpful, and gentle, and full of the kind of grace your family needs at this time.

You're in our prayers..

XOXOX

MaryAnn

[norme]

I can't say enough for hospice. I knew that Buddy was failing and failing fast day by day. He was getting harder and harder to help him move from the chair to the port a potty and back. What he could do one day he could not do the next. He really didn't want to deal with the hospital bed either but I had no choice. there was just him and me and I could not keep lifting him from the reclining chair to the pot. I knew I was going to get hurt or he was going to fall. Before the hospital bed came I decided I wanted him right with me in the family room so that is where the bed was placed. Once I had the hospital bed, I could manage to change him, feed him what ever little he would take, prop him up to watch TV with me and hold onto him with all my might.

Hospice nurse and aids came in separately MWF for the two weeks before he passed. I did Sat and Sunday without much prob with him being in the bed. Had he been in a chair I could never have done it. We had great people helping us. The nurse was outstanding and the aids were terrific. I had to call twice off hours and they were here within a matter of 1/2 hr. I gave Buddy the meds for he was in a lot of pain and discomfort and I would do it the same way again to ease his suffering.

It is not easy to make all the decisions for the care of our loved ones but someone has to do it.

So sorry you are not having this experience.

[Budd]

Thank you all for your support!! That's a saying on some commerical isn't it??

This morning I happened to get a phone call from Chris' case manager from the HMO. Boy, I was still in the frame of mind I was in last night when I posted here.

Well she was appalled, that's not what's in their contract with this hospice. that he should be getting all the services that the ins. co is paying hospice for. So I did the general ranting and raving and she said she would get back to me.

Within an hour, the hospice nurse called and said she got a call from the insurance co. Sooooo, we will now be having a night nurse for 8 hours, midnight to 8am (I figure if they want to pay someone for 8 hours instead of the 15-20 mins, that I need - go for it) and and aide on both Sat. and Sun afternoon.

At noon, our "granny" aide will be here, with the hospice nurse (granny needs help remember) who called the social worker and she is also coming at 1, so we can "discuss" these issues. OK, fine with me

So you absolutely wonderful people, thank you, thank you, thank you, for all the wishes, prayers, and help. I will keep you updated on what happens, as granny just got here

Deb

[Guest]

What is VNA?

[ginnyde]

Visting Nurse Association

[Cindy RN]

DEBBIE

I have done some checking and have a phone number for you to call

National Hospice Org. 1-800-646-6460

State Hospice Org of Mass. 1-800-962-2973

I have talked with a few nurse friends that do hospice in my area and they were apalled!!! They both said first call your hospice agency and ask to talk to the manager/supervisor and tell her date by date what has happened. Just what you told us. If she does nothing within 12 hrs. Call her back and notify her you are calling the state hospice org.

YOU have the right to do this. Your dear husband deserves so much more than this. Help him by making these calls.

I am praying for strength for you at this time.

God Bless, Cindy

[Don Wood]

Debbie, my heart aches for you. I'm glad you came on and vented about this. I am shocked at the Hospice treatment -- not what we experienced on three different occasions. You don't need further aggrevation -- you need relief. I agree that you call and get this situation strengthened out for yourself and for Chris. Don

[Donna G]

Debbie, There are so many things available to help you. We have a new lift at our hospital that one person can stand some one up and move them to a chair , then later put them back to bed. You could stand him up and change his depends etc if they have side closures . the one we have our old folks really like! It makes them feel as if they were walking and none look nervous like some did when we used to old Hoyer swing like lift. Sure hope they get things fixed up for you. Just wanted to say my mother came from Medford. Your picture of Key West reminds me after we got married my husband was transfered from Boston to Key West, we lived there about 4 yrs. Again hope all gets cleared up . This site shows you something like I was talking about. Donna G

http://www.patientsafetycenter.com/Tech ... /09-33.htm

[Budd]

Thanks again everyone for all the info.

All of hospice was here at noon. Granny, our nurse, and social worker.

Apparently I now have all the help I will need. A night nurse (thinking this will be weird or odd to get used to), and aides on the weekend.

The nurse and the aides are coming from the same company that I was told I could do private pay with. So I guess the insurance company case worker must have really gotten on them about services that they are paying for. Now Hospice is sub-contracting out with this company and I do not have to pay.

I, the nurse and social worker sat for 3 hours going over everything that had gone wrong. Seeing that I love the social worker and she's great with our 21 yr old son we are going to keep this hospice. The nurse asked if I wanted another one instead of her and I said no. She is so good and compassionate with Chris I just don't want to put him through having new people coming around.

Before I heard from them this morning, I had printed out a copy of my post here and faxed it over to our family doctor who is a friend. He called while they were here, appalled at what had happened and made me promise to call him once a week or he would call me.

I now truly believe it all started with the hospital discharge case manager, although the VNA should take alot of the responsibility also. Chris' VNA nurse he's had since last July was on vacation. She has already been over to visit him now as a "friend". She was totally disgusted at what had happened and has reported it to the VNA higer ups.

I also think the insurance case worker made the biggest stink with the Hospice administration and the hospital. I'm still baffled that the HMO really went to bat for us on this.

But they did get him to stand up today, put him on the commode for a bit, and are going to call about him getting some limited PT. So I guess you can say I did get everything I asked for and was concerned about. Like pulling teeth, I hated the stress, but it's all in place now. If not, we start all over again will all the info you have given me.

So with us, it's always been Murphy's Law anyway, so why should it change now

But as I said, you guys are the best !! I couldn't have asked for more from all of you. All the phone number's, sites, etc. You all went the extra mile with all your suggestions and I so do appreciate it.

I now can say proudly, Hi my name is Debbie and I 'was' a lurker

[Don Wood]

So glad it all worked out. Have a great Easter! Don

[DeanCarl]

Debbie,

I'm so glad you've started to get all this streightened out. Sounds to me like somebody was doing the "cost cutting" dance and because you stood up for what was right they got their feet all a-tangle. Insurance companies can get REAL testy when they fiind money they're paying out to others isn't being used for what they are paying for.

Ya done good! Now don't let up on 'em. Make sure your getting the care you and Chris deserve!

Dean

[mayos]

There should also be a State Omnbudsman (patient advocate)....You can call them to explain problems with caregivers and services. They are social workers trained to intercede on the patient's behalf. I've had a very good relationship with the omnbudsmen in our area concerning my brother who resides in a nursing home. One thing you need to do is ask for the names and the official telephone numbers of your local omnbudsmen.... since the information is rarely offered. I'm hoping this situation is becoming much more bearable for you....