Hospice roller coaster ride.

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I've been caregiver for my mother-in-law for 6 years now. She has many health problems, and has wanted to die for a couple of years now. Well, she is finally on hospice, and I know this will sound terrible - but I'm so tired of the rollercoaster ride! They keep telling us she is showing signs that she's close to dying and she's barely moving/talking, etc., but then a couple of days later, she's perked back up and talking, drinking and eating. Then she starts declining and it starts all over again. I know only God knows when we die, but this slow death is so sad and frustrating! And needless to also say it's also frustrating to see her grandkids that she raised and hardly never visited her are showing up and acting all sad and caring about her now. UGH! Anybody got any suggestions as to what helps to keep you from going nuts?

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Bio, you might want to start a new thread to ask this question.

What does the administrator of the facility say when she/he is asked this question? Have you called the Ombudsman?
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How can we prevent the assisted living home from charging us for supplies that are provided by hospice?
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My mom has been in a nursing home for 7 months. The last 3 months she has been on hospice. She has dementia, chf, renal failure, and diabetes. She is private pay for the NH and hospice gets paid from Medicare. Hospice has not discontinued any of her medications. They did add Ativan for agitation. She needed it. We just recently started giving her Ativan before bed every day. They do not give any meds unless I approve them. I have seen her go from I didn't think she'd make it through the night snf so weak and confused she couldn't feed herself, to very alert and sitting chatting with everyone. She no longer walks but can be stood up with assistance to transfer to toilet, chair, wheelchair or bed. She is helped by the NH aides in everything except showers. The hospice aides come every morning to give me showers and check for bruises or sores. She sometimes (often) forgets to use the call bell for help so falls often. The hospice nurses, NH nurses and hospice and NH aides work very well together. I go to the home every day at different times and have been called in evening or at night and have gone in. When they call me, they also call hospice. Usually falls or very confused and agitated. I am grateful for the hospice team and hire well they work with the NH team. It has been a long stretch and is continuing on. They are all very helpful to me and my mom. I would say my mom is the roller coaster ride not the hospice team. It has gone on longer than any of us thought. She will be taken when it is her time not mine, hospice or anyone else's. Just take care of yourself it could be a long ride.
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i find this string very helpful and I am happy to read that I am not the only one on this ride or having these feelings. My mom has been on hospice for 2 years (breast metastasized to bone). she will decline and the ride that along and then decline and ride that along also. She is strong stubborn and had a will to live like no one I have ever met nor will I ever meet. I give her credit. Last week we thought she'd be gone. She went on oxygen, totally incontinent, weak, couldn't stay awake, talking about how much she loved all of us and that i was the best thing that ever happened to her and thanked me. etc. now she is perked up as if she's cured(which obviously she isn't) but it's exhausting and I feel terrible for even feeling some of my feelings. This sounding board helped so thank you.
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These posts are interesting yet in my opinion missing the source of the problem.Caregivers (not inclusive of hospice as their job is such), in particular a son or daughter taking care of a loved one must go on with their life as most of us have our own friends, jobs (bills to pay), children that have their own hobbies and on and on. The problem is generally with the sick person (after all the sick person is the problem). And in particular the sick person quite often wants things done their way (whether it be, "i'm not selling my house" or, "i'm not moving in with you" or, "i need you to drive me to the store" or ad infinitum.
Most persons having problems don't particularly have the problem of a dying relative but in particular a dying relative that won't do the right thing.
As a parent myself I don't have a right if I am sick to take others down with me but a great many people don't have that viewpoint and that in my opinion is the problem. Death is big business and gets way too much attention. The hospice community fundamentally does not work well with the doctors and the doctors don't work well with the assisted living facility and the assisted living facility does not work well with hospice and on and on. Why would they? It would not serve the bottom line. Lets be real and honest for just a second shall we? We go on and upon death we will be shortly in a new body, whether you believe this or not is not relevant. All of us taking care of a sick relative whom we love have a responsibility to help that sick relative but the person that should always be in charge is the well person not the sick person for sure. So, the solution is to take care of the loved one on the schedule of the person that is well and if the sick person wants it done their way and that person is not amenable to the well persons way no matter how much reason is used then that sick person has an extra major problem which is not solvable in this comment but it would be my opinion to let them alone if needed until they make an honest change for the good of all. Does no good to yourself go down with the infirm.
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dinagrey, my husband and my mother saw/see the same wonderful geriatrician. My husband was not a smoker. My mother definitely is. On her first visit Dr. April said, "I am now required to talk to you about smoking. I will only do this once, not every visit. How long have you smoked?" 64 years. "Have you heard that smoking is not good for your health?" Yes. "Do you want to quit smoking? There is help available for that." No. "That is certainly your decision. I won't ask about it again. If you change your mind just tell me and I'll see that you get help." And that was the end of that topic. Later the doctor said to me, "Sometimes people with an elder in the last stages of COPD or with lung cancer fuss at them to stop smoking. There is no point to that. The damage is done. Not smoking now won't change anything, except make the dying person anxious."

(My mom now uses e-cigarettes. Not for her health but to eliminate all the burns in the furniture!)

I don't know if alcohol is in the same category. But I do understand where the hospice nurse is coming from on that. Their job is to keep the patient comfortable, not to reform their bad habits. Of course, you are entitled to make your decisions your own decisions for your loved one. Just listen to the hospice reasons and then do what you think best.
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I lost my younger brother almost 8 months ago he also was on hospice, the doctor gave him maybe 6 months but that wasn't the case he stayed on hospice for the next 3 years. The last 3 months was hard to watch I was his 24/7 caregiver but I'll tell you something, I wouldn't trade one second of the ups & downs I stayed with him, slept on his bedroom floor so I could hear him breathing. We were told when he was younger he wouldn't live past age 7 and he made it to 44. Nope wouldn't trade one second. R I P Larry....
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Kona,
I can understand where you are coming from, but not all hospice workers feel or act the same way. Infact the hospice nurse that sees my fil, is on the opposite end of meds., and fells as little as necessary. There was actually one nurse who came, felt the amount of morphine he was receiving was not enough, as he was/ is an everyday/heavy drinker. She explained that any type of addiction or even past trauma, may make a person more tolerant of morphine. When my mother went to the care facility, same converstaion with the doctor ( my mother was addicted to zanax and was a survivior of severe domestic violence )
I do feel good nutrition is one of the best medicines. But, I have to laugh when I think of my fil giving up sugar and refined foods., and actually eating fresh foods.
One thing that does bug me about hospice are their views on drinking alcohol. They say just let him do it, what difference does it make now? Let's see, combing alcohol with morphine and sedatives equals a big time fall soon!
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Kona, did you know that one of the first things hospice does is go through the list of medications and suggests eliminating any that aren't contributing to immediate comfort? In our case I checked with his geriatrician and his neurologist and dropped all hospice recommended dropping. As it turned out a couple had to be added back in (dementia meds) to control his anxiety and allow him to sleep at night.

Have you ever had a loved one on Hospice Care, where you could see up close and personal what they actually do?

vw9729, Hang in there! That roller coaster ride is all a part of the process. My husband was on Hospice 5 weeks. Some days he ate, and some days he didn't. Some days he was remarkably lucid and some days he talked gibberish. He had a nice breakfast and was fairly comfortable and lucid on the day he died. We can't really speed up or slow down the natural process. It will be when it will be.
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My father spent the last two weeks of his life in a wonderful residential hospice facility. They charged $125 per day out of pocket after medicare. We could afford this for that short period of time. His room had a comfortable pullout twin bed/sofa for a family member's use, they brought my moms meals three times a day (included for the $125) and took wonderful care of my dad. They could not have been more accommodating nor kept him more comfortable. We were blessed in that we did not have a single unpleasant issue with the facility.

The only problems we had were related to my mother's mental issues and in no way the fault of the hospice. We were going to have hospice for him at home, but Mom's ocd and paranoia made that impossible. Even at the hospice she made it far more difficult. The staff did an incredible job of making his last days comfortable, the only complications were caused by Mom's issues.
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