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.
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.
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!
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
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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!
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.
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.
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.
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.
If a family can’t afford In-home 24 hour care, then my advice is to run from hospice.
Why, for example, was the idea of hospice services in a NH setting not available?
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.