Didn't have a good experience with home hospice.

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This is re: my motherinlaw. I was not her main caregiver but did visit regularly. Home ho ice was just a bad experience. First,
They took her off of all maintenance medications at once. (Thyroid, blood pressure, blood thinners, everything.)
In spite of this she was mentally stable/alert, was eating and drinking, enjoyed television programs and visits with family.
She did OK for a couple of weeks until she became confined to bed for a few days and then decided to get out of bed herself. This is when the real problems started. She was put on an antipsychotic "for anxiety" 24/7. She rapidly started to deteriorate. The only time she was off was during inpatient respite (she was a little confused but was fine without medication.) As soon as she got back home she was put back on the antipsychotic. It made her anxious, constipated, her stomach hurt, she barely communicated, she stopped eating & drinking and eventually died. Beginning to end of home hospice care was approx. 7 weeks.

I had the feeling the hospice nurses cared more about keeping her quiet & keeping her caregiver happy than caring about the patient's needs.

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i have to add that my more recent experience with aunt in nh tells me that hospice attracts bottom feeders of the medical industry . the flakiest employee in the nh is more professional acting than either of the much older hospice nurses that mom and i had . no structure in hospice right now , just cowboy nurses in cars running around from house to house .. good nurses but clearly second rate imo ..
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id like to see it morph into home caregiver assistance under different terminology than hospice . the term is a constant reminder that hope of recovery is gone. i understand that recovery is out of the question but the patient doesnt need constantly reminded .
those of you in this thread who argue meds with docs or nurses i disagree with . you and myself know squat about medicine , we should only inform those in the field about our observations of behavior . my mom was tranq'd her last three months of life with haldol to calm her hallucinations . by her own admission it helped her immensely . if it hastened her death in any way im glad it did , she was gone in the head and had no QOL ..
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Medicare is cracking down on Hospice and it will be harder to get. Patients who have been on Hospice for several years are the most suspect cases. Either it was not time yet and the referral is premature, or, I hate to say it, MD's move patients to Hospice for a free ride, because Medicare fully covers it. There are families who want Hospice for the free nurses and free meds and free beds etc. It was never intended for that.
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Over the past few months, the Washington Post has done a number of articles on hospice. The articles were eye opening. The general impression was the hospice has strayed from it's original purpose now that 'for profit' companies have entered the hospice market.
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Oh, my, I'm going through the same thing with my dad. I'm his 24/7 caregiver. He's 95, has dementia and prostate cancer. His oncologist stopped cancer treatments because they were no longer working. Well, after he fell a few years ago, and was in the hospital, Hospice representatives were hovering around us like vultures during check-out time. Well, I agreed, and they have been very helpful...however they get very resistant to me if I don't agree with the medication(s). Although my dad will be 96 this December, he's always been very strong. He amazes everyone. Well of course he started declining after being taken off all of his medications - heart medicine for one. He had broken his hip back in 2008, and had trouble with his right leg since. They insisted he go on Haldol...because he was a fall risk. I was very weary about it, but gave just half doses to him. He was like a vegetable. I told them I wanted him off of it. He continued to wake up all during the night and climb out of hospital bed with rails (that we have here at home). They talked me into Seroquel. After I read about that, I was very concerned. These medications are anti-phychotics, and recommended NOT to be given to the elderly...particularly with dementia.. He started getting terrible side effects....rashes, hallucinations, outbursts, etc. When I told the nurse I don't want him taking it, she didn't even suggest something else...she just complained about me to management, and refused to be our nurse. So we have another nurse who is very good, but she too has drunk the Haldol Seroquel kool-aid so to speak. I'm so concerned for his safety, I reluctantly agreed to My dad has been back on Haldol after he fell forward trying to pick up our little dog. And this happened only because I wasn't here, and my daughter who WAS here was out of the room and didn't put his tray on his chair. (ARGH!) He cut his head, not too seriously, but it was very scary. I want him safe, and have the best care. Well, he went from being a co-coherent person who read the newspaper every morning, and sat out here in the kitchen and living room with me watching ball games, etc. to an empty person who stays in bed, and can barely speak. It's heartbreaking. I am afraid he will not last long. I suffer from herniated discs, terrible all over arthritis, and I'm now unable to help him get into the geri-chair or toilet because he is unable to hold himself up. It's dead weight. I've strained my neck and back, and I'm really struggling. I've considered nursing home, but my hospice social worker informed me that if he went, he would not be allowed to have full bed rails, the tray on his geri-chair, or be taking Haldol...because it's considered a CHEMICAL RESTRAINT! And in the state of FL it's not legal to restrain a patient in any way. Only bed and chair alarms....and it's usually too late after they go off. My dad is a serious fall risk. He doesn't realize he can't walk. He tries to climb out of bed by himself. He wouldn't last 2 days in a nursing home. I'm his only caregiver with no help and no money until his Aid and Attendance gets here, and that may be after he dies. He was at a nursing home for a respite for me, and he came home with his ankle swollen, black and blue, bruises on his arms, etc. Where he had tried to get up. I'm in a catch-22 situation. Why can't nursing homes have better ratio between attendants and patients?...Where the patient could be better monitored? It's either the drugs that will kill them, or a fall. I'm heartbroken to see my dad like this. No family member wants to be involved. It's so hard, and so overwhelming. I just know I'd rather he die at home, than alone after a fall in a nursing home. If I can hold up any longer that is. :(
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Candee - I'm sorry for your loss, and I'm sorry that your experience with hospice was a poor one. To me, it sounds like your MIL had an intolerance to Haldol. I have a very similar reaction to all narcotic pain medications - severe abdominal pain that is very often worse that the pain they're supposed to be helping. I'm not a nurse, it just sounds familiar to me. Hugs.
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Candee, I hope someone who works in hospice will answer you. I think that if the nurse noticed neglect or suspected abuse it might be different, but it is not hospice's job to interfere with family care. I gave my husband medications prn as I perceived the needs. No one checked up on me. I didn't document anything except for my own use. If I hadn't called hospice in I would have been completely in charge -- why should it be different just because they are there to help? I took care of him for 10 years. Why would anyone assume that I'm suddenly incapable of making good decisions for him?

My mother was on hospice in a nursing home. The family was very active in monitoring her condition. The nh staff administered the drugs, but on the care plan drawn up by hospice. Hospice listened to us. When we wanted a drug changed from prn to scheduled, that is what they instructed the nh to do. I was the contact person for hospice, but all family decisions were thoroughly discussed with my sisters. That was my doing, not something hospice required. They need to deal with one decision-maker.

Candee, if a medication is available prn, someone has to decide when it is needed. It sounds like you disagree with the family member who was making those decisions at home. That is not really, in my mind, a hospice problem.

I am so sorry that concern over MIL's care in her final days is adding to your grief at this time.
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I had a bad experience with hospice also. My mom died in April and her death still haunts me. When I would object or request something from the nurses they would say "you do know she is dying, right? Did you read the brochure?" (I had and I didn't think moistening her lips was an unreasonable request.) If I had it to do over, I would have the hospital do everything possible and then make the decision to turn off the ventilator if it came to that.
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I do agree that this is a family issue but a question for those that might know: Aren't the nurses supposed to make sure the medications are given properly by the caregiver? If so how? Documentation or do they take the caregiver's word for it?
Who is going to protect the patient from an unqualified or overwhelmed caregiver if not the hospice program?
As I noted above, MiL was not on the haldol at all during respite week. We asked and inpatient hospice said "it's prn (as needed) she is fine. She is sleeping through the night and pleasant. We will give it if she needs it." They never did.
I realize the outcome would've been the same, but her quality of life was much better without that drug.
I still can't stop thinking something was missing in this home care hospice case.
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No one in the family got involved because it was made clear that the medical advocate was the only one who had the legal permission to say or approve of anything. So, that made everyone not say how they felt because they didn't want to cause any conflict in an already bad situation and everyone could only imagine that what was going on was what the relative wanted. But, what the truth is that most family members don't know know the plan and was not in the loop and did not know how all this works. We are being kept in the dark. Hopefully blogs like this will shed some light on the subject just like the Inspire blog has done for families with loved ones suffering from cancer.
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