This post includes an excerpt from chapter 11, which gives comprehensive information on how to acknowledge, recognize, and respond to the eleventh step in the journey through dementias and Alzheimer’s Disease: medical care and medical advocacy.
This chapter discusses the importance of having legal documents in place early that designate power of attorney, medical wishes, and end of life care as well as the role we have in advocating for our loved ones’ medical needs and wishes and offers practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we travel this step in the journey.
“As our loved ones progress through dementias and Alzheimer’s Disease, medical care will become a more central and ever-present part of the journey. It’s important that we understand this and are prepared in every way possible to become team leaders and advocates for our loved ones to ensure that they receive the right care, the best care, and, as much as they are able, are actively involved in medical discussions, decisions, and care.
At this step of the journey, it is too late to determine finite boundaries of care and to create legal documents designating powers of attorney, living wills, and Do Not Resuscitate (DNR) orders because our loved ones are not considered competent to make these kinds of decisions.
So it is imperative that these decisions and documents are discussed, if not well in advance of the initial signs of dementias and Alzheimer’s Disease, at least in the earliest stages, when our loved ones can decide what they want and convey and formalize those wishes.
In fact, we all should do this, no matter where we are in life. We should have wills, living wills, DNR’s (if that’s what we want). We should talk to the people that we designated to ensure our wishes are fulfilled and let them know that they are responsible and what we want and don’t want.
In addition, someone should have all our financial, insurance, and digital (online access to bank accounts, email accounts passwords, revenue accounts like Amazon and eBay, etc., blogs access are a few examples) information.
It’s important to understand that this does not mean they have or need access to our money or our stuff. Generally this person is going to be the power of attorney for our healthcare and finances (there are legal documents to create and designate these) anyway, and we are the ones who determine when control of our stuff gets turned over to them.
Therefore, it’s important to pick someone we trust and it’s important to review those documents from time to time to ensure that all the information is updated. People get divorced. People die. We add and we drop banks, policies, jobs all the times. Make sure your legal documents reflect all of these.”
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 firstname.lastname@example.org 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.
In this post, we will discuss what palliative health care is, when and why it should and can be used, and what services it provides at home for our loved ones with dementias and Alzheimer’s Disease.
Although, as any caregiver can tell you, dementias and Alzheimer’s Disease are always on the radar with our loved ones who have these neurological diseases, there are often other health-related and age-related illnesses that our loved ones are also dealing with, especially if they’re elderly.
Home health care services are available – and should be used – when there is an acute medical condition that needs to be monitored and resolved (if possible) after our loved ones are discharge from a medical facility. Examples of acute medical conditions can include hard-to-manage/uncontrollable blood pressure, diabetes, life-threatening cardiac events, pneumonia, embolisms, strokes, and joint replacements.
As soon as the acute medical condition no longer exists, home health care services are no longer available. However, most home health care agencies have an intermediate health care option between home health care and hospice (end-of-life, with very specific criteria, which we’ll discuss in the next post) care.
That intermediate option is palliative health care at home.
Palliative health care provides home health care services when someone has a serious long-term or terminal illness, but death is not imminent or the prognosis is longer than six months.
Palliative health care provides life-prolonging and curative treatments – just as home health care does – as well as providing pain management and symptomatic relief.
Palliative health care offers the same interdisciplinary team and services that home health care offers: nurses (visits are usually one a week), physical therapists, occupational therapists, speech therapists, home care aides to help with daily activities like bathing, if necessary, and 24/7 nursing/medical support.
Like home health care, this palliative health care team’s manager is the nurse who coordinates and collaborates with the primary care physician and other palliative health care staff.
Palliative health care is an excellent bridge that gives us and our loved ones time to find, consider, and agree on options for care without being rushed into making a decision without having all the facts, discussing and understanding them, and being ready to live (or die) with them.
The goals of palliative health care are different than home health care. With the knowledge that death is the eventual outcome, the emphasis of palliative health care is in the following areas:
Comfort and relief from physical symptoms like pain, nausea, fluid retention, and shortness of breath
Communication and coordination of issues, treatments, and needs among doctors (although at this point, I’d personally recommend – and this is what Mom and I agreed to – just working with a primary care physician), other palliative health care staff, our loved ones with dementias and Alzheimer’s Disease and us
Time to pursue treatment options, if wanted, and time to prepare for death (discussing death, ensuring that all “loose ends” are tied up, meeting personal goals, and saying goodbye)
Since most home health care agencies have a palliative health care program, the transition is easy – either we and our loved ones or the home health care nurse will ask the primary care physician to write an order – and seamless – the same team of nurses and therapists continues throughout the palliative health care phase of care.
Some palliative health care programs have social workers and clergy on staff to help with any community-based services that may be needed in the home and to offer bereavement counseling.
The palliative health care program that Mom was in did not have those services, but we were self-sufficient in terms of a social worker and we had enough spiritual support from our close-knit group of long-time friends within our church family.
Palliative health care should be, at some point, a part of the care we ensure is in place for our loved ones with dementias and Alzheimer’s Disease.
Most people don’t even realize this option is available – and our loved ones do not have to have been receiving home health care services to receive palliative care – and that is one of the reasons I wanted to explain what it is, what is does, and why it’s a crucial part of the team approach to care that we lead for our loved ones.
In the next post, and the last one in this series, we’ll discuss hospice care.
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.