Hospice roller coaster ride.

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?

How can we prevent the assisted living home from charging us for supplies that are provided by hospice?

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.

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.

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.

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.

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....

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!

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.

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.

"IsntEasyGiveaHug", I agree, hospice is to provide "comfort" care during one's last days on earth, but on the other hand I can understand where "konacaregiver's" concerns lay. My dear mother passed on Valentine's Day, and our experience with hospice was a 'love/hate' one. All the nurses but one were caring and seemed to try hard, but we were forced into a few unnecessary and, for us as a LOVING and protective family, extremely painful 'confrontations'. Mom was on fluids and the whole time it seemed that hospice' itinerary was to force the family into their protocol; by protocol, I mean that the nurses were trying to force us to take away my mom's fluids! This was her and our wish, and we fiercely protected that. Furthermore, if the fluids were causing distress to my mom, i.e. pain, severe swelling, harder breathing, we would have agreed to remove them as a family, but hospice was pushing us into removing them from the get go for no good reason as confirmed by one of their great nurses in conversation. Thus one can come to the conclusion that they 'facilitate' death. This was their protocol and my brother and I did NOT need that extra stress at the time that my soul mate, my mother, was making her final journey to the other side! My BP shot up every time I had to call and ask about extra bags of fluid. So to be fair, you as loving caregivers need to advocate for your loved one, when needed, to the very end; respect their wishes and provide comfort and love for their passing. As one of the nurses said, when it comes to doing what is best for the patient she would listen to the family first...because they know the patient best. So that aspect of hospice was needlessly unpleasant, but they did help us through this horrible time. All in all, I support hospice and would use them if and when I ever needed to; just that in our case with the care mom got from us, we would not go with hospice if it were not for the fact that they did provide the liquid morphine for mom. Take care all and God Bless in your caregiving! It takes a special person and you are all that for sure!

Just lost my Dad six months ago and Hospice was a God sent, they walked us thru the steps when we had questions they sat with us told us what was going on and made the days easier. I understand what you said about family as we also had people come that has not seen him in years but they helped in the end by being by his side as we got much needed rest. They also have to deal with the fact that they did not see him as much but no one really expects their love one to go so quickly in there eyes there was always time. I know you hear this all the time but ask the Lord for his Grace.

My mom is on hospice too I know what you mean don't know how many times we thought this was it then she gets better and the cycle starts again now hospice put her on Ativan all she does is sleep when she awake she's confused and scared and screaming she has dementia and chronic uti so I know about the roller coaster ride take care of yourself

Kona - your comments are entirely off-base for what hospice is. Hospice does not "facilitate death", hospice is all about providing comfort and palliative care at the end stages of live for those with a terminal disease.

VW - For many of us, death is visualized by what we have seen in the media. The drama of the massive heart attack and they keel over dead; the gunshot dead and the pool of blood. Just think of all the TV series that start off with the dead body. But the reality of death from is far from that. It is a long march with period of rally's but it eventually comes. For my MIL, she went into a free-standing hospice facility from a hospital discharge (after about a weeks stay). She had been in a NH prior and had been on hospice at the NH but she was then what I like to call the "Bataan Death March Hospice Style" - just a long slow decline with cognitive peaks now & then. Most of the others at the free-standing hospice facility (had been a hospital) were cancer patients and looked very, very bad. Visually you just knew they were close to death. But the end stage dementia patients still look just so good, so it's hard to realize that they too are close to death. It's not easy. I'm assuming that your MIL is still @ home and that is where she is on hospice? If so, you might speak with her hospice group to see if she could go to a facility based hospice for her end stage care - if you have them in your area. My mom is in a NH and not on hospice but when the day comes for that level of care, she has signed off on which hopsice group to be affliated with (VITAS). VITAS was chosen because they have a facility in her city and for us this makes the most sense for our approach to her care plan. Again none of this is easy and you are doing the best you can.

You are doing a good job. Keep breathing, praying eating and sleeping (when you get the time . . . . along with ALL the other stuff involved in helping another person to pass on and to keep your own life from not falling apart. All these fine folks in this string have addressed the hospice part of this so I wont repeat. I just wanted to say try and go a little easy on the grand kids. People are all works in progress. They may be JUST starting to realize that they aren't invincible and that the people who always had THEIR backs aren't always going to be around. It can be a good time for them to turn to God as well. God will always have their backs which will help them grow stronger through this time. You want them to be able to do one day what YOU have been doing all this time. Keep breathing in and out — God bless you

"konacaregiver" - hospice professionals may be offended by the statement that the function of hospice is to "facilitate death." Hospice's purpose is to alleviate suffering. Hospice care is often put off because there is this false belief that they are "the grim reaper." In fact, what "vw9729" is experiencing with her MIL is not uncommon. Once pain has become manageable and non-palliative drugs have been discontinued, patients often 'perk up' and become more lucid and more 'alive'.
Hospice focuses on the quality of a patient's days, rather than the number of their days.

Your MIL is probably on too many prescriptions to begin with thus the reason for her health problems. She might heal and get better if you wean her off of those prescription poisons and give her some nutritional supplements instead. Hospice's function is to facilitate death. It doesn't look like your MIL is ready for that IMO.

Each end of life situation is unique, but I assure you that your feelings are normal. You may feel alone, afraid, frustrated, and angry with yourself, your family, hospice staff, even perfect strangers). Anger often stems from loss and appears when your life seems out of control. You may even feel guilty for wanting death to come, and for the roller coaster ride to be over. But consider that this could be a sign that you have accepted the inevitable end. The roll you play at the end of life is just as at the start of life. It is worth the pain of heart and exhaustive work to see your loved one through with dignity and honor. There are some great, practical, suggestions from the American Hospice Foundation. Look them up, you'll find ideas for dealing with your feelings, your family, your sanity and health, and where to find much needed support. My heart goes out to you and the good that you are doing.

I, too, am in a very similar situation with my father-in-law and that is an excellent description of the hospice exp.
Just a day ago, the doctor decided to put him on steroids for inflamation ( final stage copd ) as well as some cough syrup. Meanwhile, they are telling me not much longer or it's hard to tell how he will actually pass.
Hospice has been a godsend, esp., the aid that bathes him.
He had a very good day yesterday, very little coughing and hacking, and then out of the blue, he tells the meds. are " messing with my feelings". So, trying to have a genuine conversation with him is impossible. Me, calmly telling him that it is normal to feel depressed and anxious. That conversation went no where.
Got the nurse to speak to him on the phone......long story short, off the cough syrup.
The entire time he has been on hospice, he has battled with me and the nurses about his medication; either not taking them at all, or taking too many, or not taking enough......just depends on the drug.
The thing that I have learned throughout the last two and a half years, is just because someone gets a life limiting disease, does not mean that person will change. Some people do explore old wounds and make up, or have good and true conversations about the experience, but not everyone. And, until an individual can face reality and actually experience their feelings, there are no meaningful and loving times at the end.
I feel sorry for my husband and his dad, that they could not discuss issues that were pretty bad years ago.
Denial is where they are at, and there is not a thing I can do about it.
No one comes to visit my fil either. Not his daughters, grandkids. I don't get it, other than he was not a good parent and never got close with his grandchildren. It's all too sad.
I just try to take one day at a time and ignore a lot of wht my fil says, because most of it repitition of the weather or him yelling and micro manage everything I do.

so sorry for your suitation so true only God knows when our time is, and yes I know the relatives come out of the wordwork, I just would send them away and say hey you didn't care when she was doing well, don't act like you care know, that was the way it was when my stepdad died, now my mom lives with me with dementia among other diseases and when I have to go through what you are now, anyone who has not been in touch all these years will not get the opportunity at that time as I am poa and mpoa and I make those decisions. It is hard not to go crazy, I am also going through a divorce, I say good riddens, you only get one mom and dad, men come and go, I take 6 mg of xanax a day to help keep me calm and a little respite care 6 hours a month to be able to take a nap, Will keep you in my prayers and know that you are not alone, God Bless

We probably all go a little nuts in that situation. At least we know it is temporary.

Hospice can definitely be a roller coaster ride! All we can do is take each day as it comes and provide love and comfort. Don't fret too much over her grandkids. You take care of your actions and let them do their thing. If it helps you to feel less frustrated, give them the benefit of the doubt and hope they have come to the belated realization that they should honor this woman.