The Huffington Post, on January 8, 2015, had this article, which includes interactive maps for each state in the United States where state inspection data was available, giving detailed report card information for American hospice agencies.
This is the last installment in a series that Going Gentle Into That Good Night has presented to discuss, in clear, practical, and informative language, the on-going health care options in the home that are available for our loved ones with dementias and Alzheimer’s Disease.
In this post, we will discuss the hospice care option. I will talk about the requirements to be admitted to hospice care and what it means for our loved ones with dementias and Alzheimer’s Disease in terms of the kind of care they can receive.
I will also discuss how hospice care works in a home setting (there is a hospital hospice option, but we will not discuss that in this post which is geared toward caregiving for our loved ones at home).
I will also walk you through the end-of-life process and how hospice is designed to support our loved ones and provide assistance to caregivers in the immediate aftermath of the death of our loved ones with dementias and Alzheimer’s Disease.
And, finally, I will frankly and honestly talk about the good, the bad, and the ugly that the hospice experience can be and I will provide you guidance on how to handle that at a time when mentally and emotionally this can be the toughest decision we make in caring for our loved ones with dementias and Alzheimer’s Disease.
Hospice care, in general, is available to our loved ones only when they are in the terminal (six months or less until death) stage of an illness.
The difference between hospice care and home health or palliative care is that while home health and palliative care are curative (treatment to stabilize and/or improve to extend life), hospice care is comfort (treatment to provide physical comfort while the terminal disease takes its natural course to death without intervention).
The requirements for admission to hospice care under a dementias/Alzheimer’s Disease diagnosis are essentially that our loved ones have already knocked on death’s door and the door is slightly ajar:
Must exhibit two of the following:
Ability to speak is limited to 6 words or fewer
Ambulatory ability is lost
Cannot sit up without assistance
Loss of ability to smile
Cannot hold up head
Must exhibit all of the following:
Inability to ambulate independently
Inability to dress unassisted
Inability to bathe properly
Incontinence of urine and stool
Inability to speak or communicate meaningfully
Failure to thrive in the following areas:
Progression of disease documented by symptoms or test results
Progressive stage 3-4 pressure ulcers in spite of care
Because of the prevalence of comorbid diseases – such as heart disease, unmanageable high blood pressure/strokes, diabetes, and organ failure (kidney failure is quite common in these three diseases because they affect the kidneys directly either in the disease itself or in the treatment of the disease) – that exist, especially in our elderly loved ones, alongside of dementias and Alzheimer’s Disease, it is very likely that admission to hospice care will be for one of the comorbid diseases instead of because of dementias and Alzheimer’s Disease.
In my mom’s case, we transitioned to hospice care under heart disease when Mama was having chest pain regularly. The palliative care nurse suggested that we go to the emergency room one morning when the pain was particularly acute and Mama said “No,” and I backed her up (Mama and I had, a few months earlier, according to her wishes, agreed on no more hospitals). Mama had the major heart attack that would, 12 days later, result in her death the following night of the day after she was admitted to hospice.
When our loved ones with dementias and Alzheimer’s Disease are admitted to hospice care at home, several things are supposed to happen (I will talk later about researching and deciding on hospice care before you need it since you do not have to use the hospice care of the care agency providing home health and palliative care).
The first thing is that a comfort kit is overnighted to the home for administration when needed (and if a hospice nurse is not immediately available to provide the care). Included in the comfort kit are basics like liquid morphine (hospice will provide more if needed), mouth swabs (keeps saliva from collecting mouth and throat), and Atropine drops or Levsin (minimizes wet respiration).
Hospice also has a two-week supply of all medications that our loved ones with dementias and Alzheimer’s Disease are taking specifically for the disease they are admitted under overnighted to the home.
A care team consisting of nurses, a social worker, a chaplain, volunteers to sit with our loved ones if we need to get groceries, and certified nurse assistants (CNAs) to help with daily hygiene care is also put in place to assist in supporting our loved ones and their families along the journey to death.
Our loved ones and we can chose which of these non-medical care team members to utilize. In Mama’s case, for example, we had a spiritual inner circle of longtime friends-who-were-family who provided, along with God, our sole spiritual support. We also took care of daily hygiene on our own.
Our experience was less than optimal in the other areas (including nursing until a home health nurse happened to fill in for the hospice nurse the last few days of Mama’s life).
In fact, our experience was so bad that I had decided to switch to another hospice care agency two days before Mama went into her death sleep (for my readers in the Tri-Cities, Tennessee, area, please email me at email@example.com for details on the various hospice providers in the area and which one I was going to change to on the recommendation of home health nurses I trusted).
Nursing visits should be frequent, but will increase to daily as death for our loved ones with dementias and Alzheimer’s Disease draws closer.
After death, the hospice nurse will be our first contact. They will notify the funeral home, clean up and dress (you can choose to assist or not in this process – I assisted with Mama because it was a way that I could show her respect and maintain her dignity) our loved ones, and take care of the paperwork for the death certificate.
After the funeral home picks up our loved ones, the hospice nurse will, with our assistance, document, dispose of and destroy all the medications provided by hospice, including any remaining comfort care medications.
Logic would seem to indicate that hospice care team members are sensitive, gentle, and supportive. However, in many cases, none of those things are true.
I did my homework on hospices before Mama needed hospice care. I asked friends of mine who were nurses involved in elderly care for their recommendations since they dealt with all the hospice agencies in the area.
However, one of the caveats I found is that hospice agencies can deal differently with medical professionals (i.e., better) than with family members of loved ones who are in need of hospice.
When I talked to the first hospice agency that had been recommended to me, the first words out of the director’s mouth, before I’d said much more than my name, were “We’re not a babysitting service!”
The nastiness in her tone and what she said took me totally aback. Even looking into hospice care as an option is emotionally and mentally tough because it means we realize that time for our loved ones with dementias and Alzheimer’s Disease is short and finite and we’ve accepted the reality of rapidly-approaching death.
Even though there’s a rational, logical, objective component in that realization, the emotional and mental component of wrapping our heads around it isn’t so cut and dry, and a little empathy, compassion, and gentleness in the recognition by a hospice care agency is not unreasonable to expect.
The reason is that the first contact we as caregivers and advocates for our loved ones make to a hospice care agency leaves an impression on us as to the kind of care that agency will provide for our loved ones. If they treat us badly, then it’s safe to assume that is the quality of care that our loved ones with dementias and Alzheimer’s Disease will receive.
I crossed the first hospice care agency off my list simply because of those first words out of the director’s mouth to me.
The hospice care agency that Mama and I ended up with was not the one I wanted because I’d had a similar bad first contact with its director. However, the hospice care unit was in the same provider that we had received home health care and were receiving palliative care from and the hospice care director showed up with the palliative care nurse on the day that Mama was having acute chest pains.
The director of hospice care said it was time to admit Mama to hospice for heart disease and I knew at that point that I didn’t have the luxury of time to get another hospice care agency lined up and on board, so I did what we needed to do for Mama, despite my strongly negative impression from my first meeting with the hospice care director.
For the first eight days Mama was under hospice care, she and I were pretty much on our own. The only real support we got was through a couple of phone calls to the 24/7 medical line.
It was not until a home health care nurse (I knew he was a home health care nurse and he confirmed it when I asked him – the night and day difference in care for Mama and support for me was that obvious) from the agency filled in for the hospice nurse who was finally supposed to visit Mama showed up four days before Mama died that I had any confidence that I had made the right decision by switching Mama to hospice care.
I share this personal experience because it’s not as unusual as you might think. I’ve heard similar stories from other people with other hospice care agencies in other parts of the United States and the world.
That’s why you need to know that, if our loved ones with dementias and Alzheimer’s Disease have a longer time frame to death than my mom had, you have the ability and the choice to fire a hospice agency that is not working, whatever the reason(s).
Hospice care is designed to be comfort care – and that includes good support for caregivers and the family – and if that is not the outcome for our loved ones and us, then that is unacceptable and we have the freedom to switch to an agency who does provide what a hospice care agency is supposed to.
I’ll include the short summary from Amazon I wrote for the book:
“This book looks comprehensively at all the steps that occur in dementias and Alzheimer’s Disease.
In my own experience with this and in counseling, supporting, and working with others who are going through these steps, I realized there is a basic lack of comprehension about the big picture of how these neurological diseases progress.
I know that because the same questions get asked and answered over and over again.
My purpose is to ask those questions and answer them in a way that, first, makes sense, and, second, works for everybody involved.
I know. I’ve been on the caregiving side of the equation personally. There were no books like this when I did it, so I had to learn on my own and figure out what worked and what didn’t. I made mistakes. You’ll make mistakes.
But, in the end, my mom and whoever you love and are caring for, got the best we have to give and we can learn some pretty incredible and good life lessons along the way.
If you don’t read another book on this subject, you should read this one. I don’t have all the answers, but the answers I have learned are the ones that probably matter most.
Not just now, but for the rest of our lives.”
This book also includes the last step that we take alone without our loved ones: grief. I’ve been there and I’ve done that and although I will never not feel the grief on some level, I’ve learned some lessons that I know will help each of you.
Today’s post will discuss our role as medical advocates and medical support for our loved ones suffering from dementias and Alzheimer’s disease. Here I will provide practical advice and suggestions, from my own experience, in managing the medical aspect as easy, as straightforward, and as un-disruptive for our loved ones as possible.
The very first thing we need to do as caregivers is to make sure medical wishes and medical legal authority – medical power of attorney – are documented and authorized (primary care physicians can do this; I suggest getting them notarized as well). Hopefully, these have been discussed enough so that either our loved ones have already taken care of them or we know what they want and are able to execute them ourselves.
For anyone reading this who is not a caregiver or suffering from dementias and Alzheimer’s Disease, now is the time to think about these because time and chance happen to us all. For those of us who are caregivers, these are documents we need to locate and keep in one place.
A medical power of attorney document designates who will make decisions when the person drawing up the document is unable to.
A living will essentially specifies whether a person wants everything done possible to keep them alive, no matter how long, how futile, and how expensive or whether only comfort care is given when it’s clear that the end of life is at hand.
A DNR (Do Not Resuscitate) document states that the person does not want to be resuscitated if he or she stops breathing.
I suggest getting a briefcase or backpack to keep all the documents related to the medical care for our loved ones in. The briefcase or backpack should be accessible at all times, so it goes everywhere we and our loved ones go.
The medical power of attorney, living will, and DNR should be kept together in a folder in the briefcase or backpack. The other items in this backpack should include medical history documents and an up-to-date list of of medications (I’ve attached a sample Excel spreadsheet you can download and for this). Get an inexpensive wallet to put a photo id and Medicare Part A and Part B cards in and keep that in the briefcase or backpack as well. Always have something (electronic or pen and paper) to take notes with.
It is important to remember that we caretakers have a responsibility to advocate for our loved ones with dementias and Alzheimer’s Disease with all medical professionals (primary care physicians, psychiatrists, nurses, dentists, hospital staff, home health staff, and hospice staff). However, it is equally important to remember that, unless our loved ones are in the dying process and, therefore, unresponsive, that we need to include them in all conversations, explain to them what is being discussed and why, and make sure the medical personnel include them as well.
While our loved ones may not understand everything, we must not treat nor let anyone else treat them as if they are invisible. This is probably one of the greatest gifts of love and respect we can show them.
We have to usually initiate this by stopping the conversation the medical professional is having with us, turn to our loved ones and hold their hands, make eye contact, and explain. Eventually, the medical professional will make eye contact with both us and our loved ones.
The reality is that we don’t really know how much our loved ones comprehend or understand. It’s my personal belief that they understand more than the diseases allow them to respond to. I also know that touch and inclusion are two basic needs we all share as humans, so it’s essential that our loved ones never feel excluded or unloved.
Hospitalizations are hard on elderly people. I don’t know all the reasons why, so I wouldn’t begin to speculate (although I have some opinions about it) as to why. For our loved ones with dementias and Alzheimer’s Disease, hospitalizations are not just hard, but extremely traumatic because of unfamiliarity of everything: people, place, and routine. Going into a hospitalization, we as caregivers must be aware that it will be a setback for our loved ones when they come home.
Because of the traumatic effect of hospitalizations on our loved ones, it is critical that we as caregivers stay with them as much as we’re able during the hospitalizations. We are, even if some of the time they don’t know who we are, familiar. And our presence can help neutralize some of the fear and anxiety that often occurs during hospitalizations.
Always have a “hospital bag” with clothes, toiletries, and other things our loved ones need packed. That bag goes every time we take our loved ones to the ER or with us as we follow an EMS transport. (It is imperative to be sure to wash the clothes from the hospital stay immediately and separately from any other laundry when we get home.)
Spend the night for as long as our loved ones are hospitalized. I know, because I’ve spent way more nights than I could ever count with my mom – even before her dementias and Alzheimer’s Disease diagnoses because I didn’t want her to be all alone – in the hospital, that there’s iffy sleep, awful coffee, and not-so-great food. But our loved ones are worth it.
But spending the night has an additional, and equally-important, benefit. Most doctors make rounds between 7 pm and 8 pm in the evening and between 6 am and 8 am in the morning, so by spending the night we’re always there when the doctors are there so we can be current on what’s going on with our loved ones. I’ve found that, in general, hospital nurses either don’t know much or are too busy to take the time to give you real updates, so the only in-depth information you’re going to get will be from the doctors.
The other benefit of staying with our loved ones is that we can make sure they get the quality care and attention they need. It’s been my experience that most hospitals simply to don’t have enough staff to provide much personalized care, so if there is no one there with the patient, the patient just has to wait until someone gets around to him or her. By us being there, we can ensure that our loved ones are clean, taken care of, and not uncomfortable in any way physically. That’s one of the best ways we can serve them.
As I mentioned, expect a setback after hospitalization. It can last anywhere from a few days to a couple of weeks. Recovery will eventually occur, but it’s important to know that it will never return to the pre-hospitalization state. That’s just the nature of these diseases.
It’s important to be patient, loving, kind, gentle, and tender no matter what. It’s my opinion that most of the behavior is a way of expressing fear, so it’s important that we allay those fears and help our loved ones feel safe again. It takes time and a lot of deep breaths sometimes, but this is another way we show them how much we love them.
Ellen Goodman is one of my favorite essayists and authors. My first exposure to her writing was an essay entitled “The Company Man.” Even though I was just 16 years old when I read it in my AP English class, it had a profound impact on me. I still often think of it when the days and nights of life get long, hectic, and overwhelming and it helps me to step back and do, if nothing else, a little reset to get my priorities realigned.
Therefore, when I read her post on the living-or-dying decision-making (and second-guessing) she had to do for her mom when Alzheimer’s Disease had forced Ellen to be the decision-maker, I found it very interesting.
And familiar. Because even if you’ve had “the conversation” many, many times, I think second-guessing, especially toward the end of life when push comes to shove, is inevitable.
Mama and I had talked in-depth about her dying wishes for years and we had the documents and the paperwork done well in advance of her dementias, Alzheimer’s Disease, and congestive heart failure diagnoses.
She had a living will with no extraordinary measures, as I do. And she decided on a DNR after Daddy died without one and she saw first-hand the effects of futile life support that he had to go through in that last hour of his life because he didn’t have a DNR.
Even though Mama was a medical professional, as was Daddy, I believe the impact of seeing her soul mate and best friend go through being kept artificially alive even for that short period of time was profound and life-altering for her.
We talked about it a lot right after Daddy died, and I told her I had a DNR and had gotten it in my early 20’s and I told her why I had (and still have) it. It made sense to her and we had her doctor draw it up and certify it.
As Mama’s heart health declined, we continued to have conversations about what she wanted and didn’t want as far as quality of life versus quantity of life.
We were so much alike in our very strong views that quality of life was what was important and not quantity (and this really is the core issue that must be addressed and resolved as part of the dying wishes conversation) that we never disagreed on care, treatment, and outcomes.
But it was because we had these heart-to-heart talks a lot in the last years of Mama’s life and we openly and frankly discussed death as the inevitable outcome and how Mama wanted that to be, as much as was within her control.
When Mama told me she didn’t want to go to the hospital anymore for treatment for her congestive heart failure, I honored that wish, despite the frantic response about liability from the nurse on the phone when I called to have Mama’s doctor give us a prescription for the medicine (Lasix and potassium) and a schedule so that I could treat Mama for it at home.
The doctor ended up calling me himself and he got Mama in the next day to the office and gave me the prescriptions and schedule to do at home with a follow-up visit within the week with him. And we continued to do this at home until Mama’s death. That’s what she wanted and I was determined to make sure that her dying wishes were honored.
The issue came up again three months later when, on her birthday, Mama started throwing up in the afternoon and had chills and sweating. I wasn’t sure whether the symptoms were heart-related or not, so I took Mama to the ER. She had a gall bladder infection and after we were transferred to a bigger hospital early the next morning, a gastrointestinal surgeon came in and tried to talk us into putting Mama under general anesthesia to remove her gall bladder.
I refused that because I knew with Mama’s weakened heart, she wouldn’t survive it and told him we needed a Plan B. He reluctantly said they could put a drain in with local anesthesia to drain the infection out, but that reinfection was likely within a year. I realized even then that Mama’s health was such that it was unlikely that she would live long enough for a reinfection to occur, so after she and I discussed it, we agreed to the drain, which was successful in removing the infection.
It wasn’t until the very end of Mama’s life that I did any second-guessing. I knew logically and intellectually what she wanted and I was committed to honoring that. And I did.
But most of my second-guessing came in the form of wanting to be sure that I wasn’t overreacting as death approached and that once it was clear that Mama was in the dying process, I wanted to be sure she wasn’t suffering and I didn’t know how to gauge that (she wasn’t and I know that now, but it was paramount on my mind then).
The reality is that, with appropriate comfort care during the dying process, it’s harder to watch someone die than it is for them to actually die. Because we watch our loved ones die with all our senses intact, all our systemic functions intact, and all our alertness intact and it’s almost impossible to not project our intact selves into the process.
And that is why having the dying wishes conversation with our loved ones long before we have to honor it is so important. Most people seem to be very uncomfortable with this conversation – and the subsequent similar conversations that will and should follow it.
But let me ask you a question that shows why we need to get comfortable with it.
What if something with a life-ending outcome looming happened to you today and you’d never discussed and formalized your dying wishes with your loved ones and they were suddenly thrust into the position of having to decide whether to postpone the inevitable or let you go with no intervention in God’s timing?
Would you want your loved ones to be in that position? Would you want to be in that position? Think about it. And have the conversation. As soon as possible.
This post discusses home health care, palliative care, and hospice care options. Included in the video below are descriptions of each of these options and recommendations and advice, from my personal experience as a loving caregiver for my mom, about each one.
To begin the video, simply click on the “Play” arrow and the video will play (there is no sound).
Please continue to give me feedback on topics you’d like to see discussed here. This is our blog and, while I’ve got content that I’ve prepared and am preparing, I would also like to address any topics, concerns, and questions you have about providing loving caregiving to our loved ones with Alzheimer’s Disease and dementias.