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Home hospice just piles on a lot more physical work and mental anguish. It was so stressful. I believe hospice as part of a facility is preferable for my family.

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I think there are several misconceptions regarding home hospice care. Specifically as relating to this discussion, I think a lot of people think home hospice will be the hero in a loved one's final days. That they will swoop in and bring peace, tranquility,...and resources...for the family, allowing them to just have time to be with their loved ones as they pass peacefully.

As others have already pointed out, the hospice nurse assigned will provide for medication helpful to address pain and the transition, as well as be a contact source. But in reality, the family is STILL...even at this late stage... in the trenches, providing the hands-on care and addressing the final stage issues as they come up.

Twenty-some years ago, when my dad was dying, we were working to get him into a hospice facility; the social worker trying to find a vacancy was literally in the room with my mom when my dad died. That was what hospice was about back then. Now it is all about keeping the dying person at home. Yes, partly to let them die in their own bed, but mostly to keep care costs down and keep the burden of care on the family.

This may sound cynical, and I really don't mean it to be, but it is what it is. With health care costs continuing to rise, I can only see more elderly care at every stage being left to family members and friends.
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Not to diminish the confusion of home vs facility hospice, I am told that a death in the home residence requires notification if/when the home is listedfor sale. Probably varies from state to state. I sold a lovely home that was about 1/2 mile from a cementary and had 2 ethnic families (very interested in home) turn away due to cementary proximity. Just an FYI.
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I fired the first hospice company we had for my dad and hired another one that turned out to be a godsend. It all happened in the last two weeks of his life.

Not every hospice organization is staffed by angels, so don't assume you or your kids will have the same experience you did. Certainly put your wishes out there, but trust your kids to do what's best once you all get to that point.
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Stella, I’m very sorry for your recent loss. I lost my father last year - he chose Hospice at Home rather than going into a Hospice or Hospital. His last 2 weeks at home were very difficult and I am still tormented by his periods of suffering. Shortly afterwards, I and my husband vowed that we would each choose to go into a Hospice if we were in this situation in the future, rather than burden each other or our family with the trauma of caring for us. Before my father died, I had always said I would prefer (probably like the vast majority of people) to die at home, with the windows open, listening to birdsong whilst drifting peacefully away. But then we saw that real life (and death) isn’t always like that. The nursing professionals who visited and cared for my father at home were brilliant people, but in hindsight he would have been more comfortable in a Hospice. By the time we realised this, it was too late to move him. I would talk to your family so they are clear about your wishes, possibly even putting this in a letter to them if it is too difficult to talk about face to face. If and when the time comes, your family will be comforted knowing that they are carrying out your wishes.
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stella37 Jul 2020
I’m sorry your family also had a poor experience. I think the way Medicare funds hospice now is with the assumption that everyone prefers to die at home....but we really aren’t asked this question or fully understand what this means, Medicare saves a lot of money this way. I think having an IV to administer drugs is critical. This is just my opinion really. I guess home hospice could be improved a lot if Medicare would pay for actual CARE and provide IV medication in the home to keep the LO more comfortable.

My mother and I asked if my father could be moved to the hospice and were told “his condition wouldn’t qualify him”. He was dead a week later. So I don’t think many actually qualify. We would have paid if that were presented as an option but the hospice staff shut us down immediately.
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Imho, it would POSSIBLY be very stressful for an individual to pass away in their home, whether you have Home Hospice or not, e.g. the sadness may be a remembrance.
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stella37 Jul 2020
Exactly. People die at home suddenly all the time wether via an accident, heart attack, etc. but a home hospice death can take a very long time after the LO is unconscious.
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FYI: If you go to a facility Medicare Hospice does not cover room and board. Therefore, it will be out of pocket expense for you and/or family; unless you are in a NH provided by Medicaid.
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Grandma1954 Jul 2020
It will be covered if you are placed there for "symptom management or pain management" but not for the entire time you're on Hospice I think it would be no more than 1 week. And this is other than Respite that Medicare pays for for a Hospice patient.
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The best way to ensure that your loved ones are not saddled with the realities of dying at home is to talk to them frankly about it. Aside from sharing your personal end of life wishes if you take the time to explain fully both the pros and challenges you faced they will be less apt to step into something that they can not handle.
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Yes these days at home hospice means pretty much all care is either paid for by family or done by family...my experience with lo was done at home , facility was never an option offered. Pretty much hospice was just them getting supplies , taking off a lot of meds and ordering others ..most notably strong pain killers that also induce sleep and of course depress respiration. I am out of town so experienced most of this second hand ..was not consulted on it or would have assisted more. The care was mostly by aides although meds given by family as directed by hospice. I feel in my case, hospice was actually just hastening death. LO was not in pain beforehand yet placed on heavy meds, very sedated so when I visited last few times was not conscious although I was TOLD did have some moments of lucidity. Mostly just slept, refusing any nourishment but then LO was always susceptible to experiencing nausea and lack of appetite with any narcotics so this might have been a factor. LO was ready to go..just that I felt like was being over medicated. Also, when told had a day or less and I had to travel to town...the meds were continued heavily which I feel was why I could not get there in time to say goodbye. To me this is very hurtful ..family had pretty much been told to administer meds whenever LO even stirred, as this was a “sign of being in pain”. Maybe this is better when in the facility also, as they have more experience and perhaps gauge better when to notify family and how to not overdose the person. It is a shame that in pretty much any way ..unless you are rich or poor , elderly care is such a difficult hurdle in the USA. Even the nicer facilities are just not what they should be in my experience.
Sorry ..I realize didn’t really answer your question but ..
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Caring for a dying person IS a lot of work. That is true whether or not you have hospice to support you at home. Hospice provides support to families doing that work, tries to give people the tools and education and skills to do it better, but home hospice is for those families who are able and willing, and hopefully resourced enough to spread the burden and share an experience that they value.
As you point out, it is NOT for everyone, not for every family or situation.
Unfortunately, in this rich country, we have not chosen to create a lot of successful alternatives unless you can afford privately paid care in the home or in a facility.
I have worked in hospice (and palliative care) for almost 30 years and am lucky to be in a community that has a 'hospice house'. It is tightly regulated such that only people with high levels of need (lots of symptoms to manage, or quite close to death) can get full coverage there; after 2 weeks, the room and board is paid like any other nursing home, either with Medicaid funding or private pay. And we only have so many rooms (12 rooms; our county population is over 100,000).
Bottomline, talk with your family. Don't assume that they will be as stressed as you were. But talk realistically about what was difficult and how to mitigate that. Make contingency plans. Then write down what your preferences are for your care in your advance directives. Be positive--try to say what you WANT, as much as what you DON'T want. Decide how much flexibility you want to give those that you trust to make decisions for you when you can't make them for yourself. We see families be anguished over the "promises" they have made ("Mom made us promise to not put her in a nursing home") but then when it comes down to the kind of care the person needs, families are torn about how to/whether they can provide it without breaking the promise.
The best part is you are thinking about it now! Hurray for that! Check out The Conversation Project for ideas about how to talk with your family. Some communities have trained facilitators in advance care planning who can help you walk through the steps to making a plan. Ask your doctors office, or a local health advocacy center, maybe the Senior services network. Then get it in writing (an advance directive) and get it on file with your doctor's office. You are on the right track! Your family will thank you for being so pro-active!
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stella37 Jul 2020
Thank you for this informtion.
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Best way to ensure all is as you want - Revocable living trust. Not only for end of life - but if you become incapacitated for any reason your successor trustee steps in and acts on your behalf (financial, where you live, etc.) temporarily or permanently as needs be and you need both a Power of attorney (DPOA -financial - can be successor trustee) and a Power of Attorney for health care (get it in writing what you want and this is where you put it along with whomever will enforce when time comes). Work with an attorney - that way it is to your wishes not what some well-meaning or not so well-meaning person thinks you want. Let your family know what those wishes are.
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Hospice can vary from one organization to another with what they do and can offer.
In many cases if you would prefer to not be at home you can find a facility (AL or if dementia is involved a MC facility) that would take you as a resident particularly if they know you are on Hospice.
At the end though many Hospice will take a patient to an In Patient Unit for end of life. This is not usually done for long term it would be if there are circumstances like symptom management or if there are young children in the house and having a death in the house would be upsetting.
This is something that you would discuss with Hospice when you begin looking for the one that is right for you. There are many Hospice and just like any other medical group you can "interview" them and see if it is a good fit for you.
Do what you can now to make things as easy as you can for your family.
Organize your funeral and pay for it. Pick out the plan you want so the stress is not put on your family.
Fill out Health Care Directives or POLST so they know what you want to be done in the event you can not communicate your wishes.
There is a pamphlet called Five Wishes and filling that out can answer a lot of questions for your family.
Make sure you have POA up to date.
Write down accounts, passwords and any other information that people you designate to handle things can easily access information. (get a safe, keep the info in the safe but have the combination written so whoever needs it can get it. (I have mine written on the side of the refrigerator, it looks like a phone number but my sister knows what it is)
If you are in good health now start decluttering, get rid of stuff no one will want. Sell items, donate or keep what people will want. (No one wants the tea pot collection or the collection of rocks you picked up on vacations). You keep the memories, get rid of the stuff.
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I’m in the midst of this storm right now. My father entered at home hospice almost 4 weeks ago following a hospitalization and failed rehab attempt. At first he rallied and had some good times with friends, but this was followed by a sharp and swift decline. He’s currently in his final hours or possibly days at most. The hospice service has been invaluable in many ways, everything we need has been quickly provided, they always call back in minutes with answers to concerns, the workers have been wonderful. It’s also very true that the bulk of the actual caring is left to the family. My dad already had an amazing part time helper, she’s graciously agreed to more hours, and been beyond a friend and help. This week I hired two more CNA’s who’ve been here evenings and also been great. That leaves me overnight and that’s been exhausting. At no time does anyone do the meds but me, so all the advice to “take a nap” is mostly useless, plus dad is grunting and calling out a lot despite the heavy meds so it’s not the peaceful environment one might think. From now on when I recommend hospice it will come with the caveat that while they are a huge help, the recipient and family need to fully realize upfront that most of the care is on them, and have a good understanding of what all that may look like
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First on Hospice, I am more and more convinced that hospice providers vary widely from state to state, area to area and simply company to company within the same are in some cases. I’m sure you are correct and COVID has changed the experience greatly as well. My uncle was on home hospice until he reached a certain point which the hospice team helped the family recognize and then he was moved to their residential facility where he spent a few weeks receiving visitors in a wonderful garden area they had for that, it was very humane to all involved and pre-determined as an option when they investigated hospice providers. He had no money and insurance paid for it all by the way. But that was well before COVID. Of course the other thing I haven’t seen mentioned is that not every elderly person qualifies for Hospice, a patient does have to have a medical condition that qualifies them for hospice care though there is palliative care as well in at least some areas that I don’t think have the same requirements or patient needs, one can’t assume they will pass on hospice care unless of course they have a known terminal illness.

Now more to the point of your question. Thinking about, providing for and making your wishes known now is one of the greatest gifts you can give your family. As the granddaughter of one GM who did this and one who didn’t I say good for you! The GM who gifted us with knowing exactly what her wishes were laid it all out in a letter that she sent to her children, grandchildren, brother and nieces she was close to so everyone would have the same info in writing. She also got all the legal paperwork in order along with her estate. Hard as it might have been to follow through for a son who didn’t see eye to eye with her wishes (which wasn’t the case here) or in general it was clear to all so no guilt or super difficult decisions to second guess, we knew what she wanted. What a gift! I think it was piece of mind for her as well, knowing she had control over her end of life and resolute in what she wanted.
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Another thing we’ve learned, the only inpatient hospice facility in his town, a beautiful, bucolic setting that’s got every amenity, is only available to patients of the hospice provider with the worst reputation for care. I’ve spoken to a number of hospital and rehab social workers who all agree on not recommending this hospice provider. It’s like they built this beautiful looking place to boost their bad rap. So there’s literally no where for dad to go now
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Tell them what your wishes are. My mom died at home with hospice care, but you’re right, my sister and I did most of the caregiving and it was stressful. She came home from the hospital because she wanted to die at home. Giving the meds was the most stressful as you’re given strict instructions to only give so much, but I felt she might have still been in discomfort. My husband is in a NH under hospice care right now and although I wish he were beside me, I know they can react to his needs much better and he is comfortable. He’s been under hospice care for almost ten months now.
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My father just passed with Vitas home hospice care. There are many hospice businesses. We were very pleased with the support and staff. I only wished I had involved them sooner. My father's last week was much better with their care. The day he died was peaceful and comfortable for him.
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Stella they are still doing NH admissions even with hospice. My dad died a month ago in the NH and had hospice attendance the last two weeks. It was wonderful. I'm sorry your experience isn’t good. My best friend's mother is in hospice at her daughter's home and she has not had any issues. Granted they don’t allow aides to come but the nurse does. Not everyone's experience is as bad as yours. So I would not run from hospice as you wrote. Yes COVID complicates things. My mom died with hospice 30 years ago and it was a Godsend.
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stella37 Jul 2020
As long as the person is awake and not suffering from too much pain or anxiety, I can see how hospice care can be managed at home, especially if extra help can be procured. I guess my concern is really as death nears and anxiety increases.
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Stella; I think the point that all of us are making is that hospice facilities are not the only option. Regular NH's do a good job of end of life care with hospice as an "add on" service.

I totally agree with you that us "non-medical" caregivers should not be administering these end of life drugs. If a patient is at that stage, they need to be in a facility with full time medical staff.

I think THAT's what you need to make sure your children understand.

Again, I'm so very sorry for your loss and the distress you experienced at the end of your father's life. (((((((hugs))))))
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stella37 Jul 2020
I get you keep saying NH with hospice is a good option. I agree with you. I think Covid has made nursing home admissions very difficult and possibly impossible.

My original post pertains to HOME hospice.
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The problem with "in home" Hospice is the family really doesn't get a break. They are taught to give the meds. They are still responsible for diaper and bed changes. An aide for maybe two hours. And watching your LO actively die.

With my Dad he was pretty with it. The day he died he couldn't talk but was alert and watched a football game with my brothers. That night he passed in his sleep. He was on hospice 5 weeks.

My Mom, was in LTC. So when Hospice was not there the LTC staff was. All I needed to do was visit. She was on Hospice 2 weeks.

My Aunt had a Hospice home she went to. There should be more of these.
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stella37 Jul 2020
I agree 100% with you. There should be more hospice facilities.

The family is often at the end of their ropes by the time hospice enters. Many people have been caring for the ill for a long time. Home hospice just piles on a lot more physical work and mental anguish.

I called the hospice hotline at midnight before my father’s death because I was concerned he couldn’t swallow the crushed pills any longer. I was transferred three times to finally speak with a nurse who said my father was not receiving adequate drugs! This nurse came to the house in the middle of the night, upped the dosages significantly and quickly left. He died 7 hours later.

I am not a medical provider and have little knowledge of the drugs used in these cases. This was very stressful to say the least.
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Stella; I would NEVER run from hospice. Just because the family cannot afford 24/7 in home caregiving doesn't mean hospice isn't an option.

Why, for example, was the idea of hospice services in a NH setting not available?
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stella37 Jul 2020
We were told by the hospice nurses that HN hospice spaces were almost impossible to find right now. Again, Covid is a big problem. Admittedly, I thought wrongly that hospice staff would be around some as death approached or more guidance would be provided or I might have pursued NH aggressively. My father’s condition deteriorated very quickly.

I would say run from hospice if you can’t afford 24 hour care at $4,000 per week because, in my opinion only, I couldn’t have taken adequate care of my father was was 6’ tall and weighed 200 pounds. As his ability to walk decreased, helping him from the sofa was difficult. Medicare has shifted the cost of caring for the infirm way too much onto the family. This is my opinion from a position of admitted privilege. There have to be many families whose loved ones don’t qualify for Medicare (or who don’t have the time to qualify) who can’t come up with the cash to get some help. The “help” provided by hospice is basically no help.

Again, I don’t want my sons to be subjected to my experience of caring for my father via home hospice. I believe a hospice as part of a facility is preferable for my family.
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Stella, you are correct, you need to see a certified elder law attorney (www.nelf.org) to get your wishes in writing so that you will be able to not subject your children to what you don't want to.

I would be sure and have a family meeting with all of them and tell them what you desire for your end of life and what you don't want from them. Doing this while you are of sound mind will help them if you get dementia and decide that you will never go into a facility. Help them understand that you may be screaming bloody murder about staying home, but put you in a facility with no guilt.
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stella37 Jul 2020
No guilt is the really important part. I wouldn’t have felt guilty about taking my father to a physical hospice. I think he would have agreed with that decision if he’d been able to....we weren’t given that option.

If a family can’t afford In-home 24 hour care, then my advice is to run from hospice.
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Stella; my mom went on hospice while in a nursing home. Hospice can be done anywhere, really.

The problem, and as someone who is 67 years of age, I GET it, is that we would all prefer to stay in our homes, for a number of reasons, including wanting to leave money for our spouses and our children.

The thing is, when the handwriting is on the wall that the elder needs to move to a facility, it may be that the child/children who are going to be "called in" to do end of life caregiving may need to be given authority ahead of time to move the elder to an appropriate facility. If you wait too long, moving becomes problematic.

Can you talk a bit more about why your dad was not able to go to a hospice or NH facility for end of life care?
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stella37 Jul 2020
He was fine (pretty much) at home until the final week. We asked specifically about a physical hospice (I’ve heard excellent reports about the facility tied to this hospice) and were told several times ....”not until the end”....”no visitors are allowed”. My FIL was in a physical hospice in a different city for 2 weeks.

I’m sure Covid Is a part of our poor experience.
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Stella, first of all, I'm so sorry for your loss. I don't recall reading any of your previous posts, so I'm assuming that your dad ended up in home hospice either because he resisted moving to a facility or because his decline was swift and sudden.

I think the answer may depend upon your jurisdiction. I have heard here that there is some way of guaranteeing that your children can have an unimpeded path to obtain guardianship when you become incompetent; that seems to be one way that you ascertain that when you start going down the path to dementia, that your trusted child/children are able to move you to an appropriate facility so that your medical needs are taken care of by professional caregivers and your children are not "forced into service".

Again, I'm sorry for your loss.
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stella37 Jul 2020
Thank you. We were very, very fortunate and could afford to 24 hour care at home for the short duration it was needed. I found the hospice services to be rather lacking and very stressful. I realize Covid makes this process much worse but the entire experience was surreal and caused much anxiety.
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You make this a part of your EOL decisions and put it in your will.

Is is Hospice you don't want or the 'in home' part?

Make your wishes known and discuss it with the person who is your POA/executor. I know my daughters will do exactly what I have requested as far as EOL choices.
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stella37 Jul 2020
It is the “in home” part I am concerned about. I think the hospice facilities are preferable but seem to be used in a very limited fashion. I think I need to get with an attorney to discuss my question and concern.
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