Posts Tagged ‘hospice’

End-of-Life Healthcare Decisions

Tuesday, February 3rd, 2015

CPR: Doing CPR on an elderly, debilitated patient with a terminal illness may do more harm than good. Risks include broken ribs, collapsed lungs, brain damage, and permanent need for a ventilator. The chance that it would return the patient to his or her former quality of life is practically nil. If you decide you don’t want CPR to be conducted on your loved one, you’ll need to ask the person’s physician to put a DNR order in the chart.

Antibiotics, Hospitalization, Ventilator: It’s probably best to make decisions about these issues at the time of need rather than in advance. The decisions have to take into account the patient’s general condition. Is the patient alert and responsive? Is he or she in pain? What is the person’s quality of life? Is the patient likely to recover from whatever is causing the need for the antibiotic, hospitalization or ventilator? For example if a frail patient has pneumonia, you can try antibiotics and a ventilator if needed, but if the patient continues to get worse, you can then withdraw the medication and ventilator and allow the person to die in peace.

Hospice: In order to receive hospice services you have to agree to forego aggressive treatment for the terminal diagnosis. This means that the patient would not be put on a ventilator, for example. Or if the patient is hospitalized, it would only be for comfort care.

Symptoms that the Patient Qualifies for Hospice Care: It may be time to consider using a hospice service if the patient is showing any of the following: 1) Two or more episodes of pneumonia or other serious infections during the past 6-months, 2) Difficulty eating and swallowing, even with feeding help, that results in weight loss of 10% or more over the preceding 6 months and 3) One or more skin pressure ulcers that are not healing.

The “Real” Issue: All of these decisions are very difficult, but the real issue is to stop focusing on the person’s approaching death and start figuring out how to do everything you can to help the patient have the highest possible quality of life in the time that’s left. This dynamic shift in thinking – from death to life – will benefit both the patient and the caregiver.

 

People With Alzheimer’s May Still “Be There”

Thursday, December 26th, 2013

There was a lady with Alzheimer’s whom I volunteered to visit once a week at a local memory care facility. I’m going to call her Carolyn. Before my first visit the administration told me she loved Elvis. So I bought an Elvis CD and took it, along with my portable CD player, to the visit.

After introducing myself I said, “I understand you love Elvis.”

“Elvis?” she asked with disbelief. “Where’d they get that?”

“Well, what kind of music do you like?” I asked her.

She tried very hard to pronounce Tchaikovsky. She never did get it right but I understood what she meant.

So the next time I took Tchaikovsky’s Nutcracker Suite and played several selections for her. She was ecstatic. She smiled and tapped out the rhythms on her lap using both hands. She clapped enthusiastically at the end of each piece. It was a true joy to see her so happy.

Then Carolyn declined significantly. She was receiving hospice care and was always in bed when I arrived. Her eyes were usually closed, even though she was often awake. I talked to her but she never said anything back.

Nonetheless I kept playing the Nutcracker Suite for her every time. She showed no reaction whatsoever. I was frustrated but kept it up anyway.

Then one day I asked, “Do you like it?”

Her response was shocking to say the least.

She immediately opened her eyes widely and said in a loud, clear voice, “Very much.”

It was proof that she was still “there” – still aware of her surroundings even though she rarely acknowledged it and even though she was literally on her death bed. She died a week later.

People with Alzheimer’s – especially those in the later stages of the disease – may stop talking or making other clear attempts to communicate. Too often we assume they don’t know what’s going on around them. We think they don’t understand what people are saying to them or about them. My experience with Carolyn shows that’s not always the case.

 

The 5 Most Controversial Decisions You Will Ever Have to Make

Thursday, October 24th, 2013

1.    Should the Person Stop Driving?

The Alzheimer’s Association lists five primary reasons people with Alzheimer’s should stop driving

–  Forgetting how to locate familiar places

–  Failing to observe traffic signs

–  Making slow or poor decisions in traffic

– Driving at an inappropriate speed

– Becoming angry or confused while driving

I would add two obvious items to this list: Causing an accident or running into another car while parking.

When loved ones exhibit one or more of these it’s time to get them to stop driving. This will be one of the most difficult actions you will ever have to take.

2. Should the Person Be Placed in a Long-Term Care Facility?

Alzheimer’s patients in the later stages require around the clock care and monitoring, which is exhausting to the caregiver. You can’t be there for your loved one and provide high quality of care if you are physically worn out and emotionally spent all the time.

So when you reach the point where you’re physically exhausted and emotionally drained the majority of the time, stop and at least give some serious consideration to placing your loved on in a high-quality long-term care facility.  It might be by far the most loving course of action, and the best course of action, for the health and well-being of your loved one.

3.   Is It Okay to Stop Visiting When the Person Doesn’t Recognize You Anymore?

Some people think that there’s no reason to visit a loved one in a nursing home who no longer recognizes them, but others are firmly convinced that you should visit anyway. First of all people with Alzheimer’s may enjoy being visited even if they don’t quite know who is visiting them. More importantly, it’s possible that the person does recognize you but simply isn’t able to say so.

4. Is It Okay to Divorce Your Spouse in the Later Stages of the Disease?

This is indeed a very personal decision to make and one should be bound by his or her personal ethics.

5.  Is It Time to Engage Hospice Care Services?

Specific signs that indicate hospice care may be needed include the following

–  Two or more episodes of pneumonia or other serious infections during the previous six months

–    Difficulty eating and swallowing, even with feeding help, that results in weight loss (10% weight loss over previous six months)

–   One or more skin pressure ulcers that are not healing.

One day I spoke to a physician specialized in end-of-life care. He answered all of my questions about hospice. Then he looked to me the real question for the caregiver is “How can I help this person have the highest quality of life possible in the time that’s remaining?”

 

 

How I Accidentally Wrote a Book for Alzheimer’s Caregivers

Monday, July 22nd, 2013

I wrote Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy as a love story. It’s about the powerful 30-year relationship I had with Edward Theodoru, a delightfully colorful, wickedly eccentric Romanian gentleman and scholar.

My only purpose was to chronicle the relationship and share it with the public. The book narrates the story of our early romantic years together, including Ed’s quintessential old-school European manners, our subsequent decades-long relationship as soul mates, and our eventual triumph over his Alzheimer’s.

Come Back Early Today does not give advice to caregivers. But it does illustrate how Ed’s disease progressed and how I dealt with the numerous issues that typically arise when caring for someone with Alzheimer’s.

So you can imagine my surprise when most of the book’s reviewers focused heavily on the parts that describe how I cared for Ed when he had dementia. It shows how I managed everything from denial, getting a diagnosis, convincing him to go to a long-term care facility, arranging for a DNR (do not resuscitate) order, to end-of-life issues care issues and hospice considerations.

One day I unexpectedly received a letter from a Cape Coral woman whose husband has Alzheimer’s. She wrote:   “The main reason I am writing is to tell you how much I liked your book. Since my husband was diagnosed [with Alzheimer’s] I have read many books, attended some courses and joined a support group. Your book is the only one that gave me hope.”

That’s when I realized I had accidentally written a resource for Alzheimer’s caregivers that also includes a love story rather than a love story that just happens to illustrate solutions to several dementia caregiving issues.

I’m still intrigued (and gratified) by the unexpected responses to my memoir.

 

Preparing Emotionally for the End

Wednesday, March 20th, 2013

There are many emotional issues facing family members and friends when a loved one is terminally ill. These include things such as communicating the terminal diagnosis to others; overcoming denial that the person is in fact terminally ill; feeling the need to “be strong” for that person’s benefit; dealing with anticipatory grief; and deciding when or if to engage hospice care services – just to name a few.

I want to share my experience near the end of Ed’s life. After I started hospice care for him I consulted Doug Smucker, MD, a family physician at the University of Cincinnati who specialized in end-of-life care.

After answering all my questions, he told me something that completely changed my thinking and feelings about the situation. He said that rather than focus on Ed’s impending death, I should focus on doing everything I could to help him have the highest possible quality of life in the time that was remaining.

That turned me around and led me to focus on all the special things I could do for Ed – visiting him more often, taking my little Shih Tzu to see him, having the violinist come back and play another concert for him, and buying him even more of the stuffed animals he loved so much. This helped both me and Ed have a beautiful, pleasant months-long conclusion of our life together

 

When Your Loved One Is Ready for Hospice Care – And You Aren’t

Monday, February 4th, 2013

I want to share the experiences I had near the end of my beloved Romanian soul mate’s life. First of all, I was in denial. Even though Ed’s medical team at his long-term care facility told me it was likely that he would pass away within six months, I continued behaving as though he would live another year or two, or even more.

I did eventually overcome my denial and decided to call in a hospice organization. But the very word “hospice” scared me. I felt as if ordering hospice care for Ed would be tantamount to signing his death warrant. I knew that was ridiculous, but that’s how I felt.

I delayed the call for weeks, telling myself he didn’t need it quite yet. The truth was that I wasn’t able to deal with it quite yet. Seeing how weak and frail Ed was, I finally felt compelled to take action.

I consulted Dr. Doug Smucker, a colleague who was a family physician at the University of Cincinnati and who was specialized in end-of-life care. I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again I could resume the services.)

After answering all my questions, Doug looked at me kindly and said, “You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining.”

That completely changed my thinking about the situation. It gave me a new and positive goal – to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed — visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from The New York Times, and buying him even more of the stuffed animals he loved so much.

After that talk I spent many hours pleasantly thinking up special things to do for and with Ed. Once I got my mind off his looming death we were able to have a beautiful, pleasurable months-long conclusion of our life together.

Preparing for Your Loved One’s Death: A Critical Piece of Advice

Saturday, August 11th, 2012

There are many emotional issues facing family members and friends when a loved one is terminally ill. These include things such as communicating the terminal diagnosis to others; overcoming denial that the person is in fact terminally ill; feeling the need to “be strong” for that person’s benefit; dealing with anticipatory grief; and deciding when or if to engage hospice care services – just to name a few.

I want to share my experience near the end of Ed’s life. After I started hospice care for him I consulted Doug Smucker, MD, a family physician at the University of Cincinnati who specialized in end-of-life care.

After answering all my questions, he told me something that completely changed my thinking and feelings about the situation. He said that rather than focus on Ed’s impending death, I should focus on doing everything I could to help him have the highest possible quality of life in the time that was remaining.

That turned me around and led me to focus on all the special things I could do for Ed – visiting him more often, taking my little Shih Tzu to see him, having the violinist come back and play another concert for him, and buying him even more of the stuffed animals he loved so much. This helped both me and Ed have a beautiful, pleasant months-long conclusion of our life together.

Hospice Care for Alzheimer’s Patients near the End of Life

Wednesday, November 30th, 2011

It’s Not Just for Cancer Patients: When we think of hospice care we often associate it with cancer patients, but it’s also valuable for advanced stage Alzheimer’s patients. In that stage the person is unable to walk, dress or bathe without help; has trouble controlling urine and/or bowel functions; and only rarely speaks meaningful sentences.

 More Specific Signs that You Should Consider Hospice Care: According to Gregg Warshaw, MD, Director of Geriatric Medicine at the University of Cincinnati and Past President of the American Geriatric Society, if your loved one with advanced Alzheimer’s is exhibiting any of the following symptoms, it’s time to talk to his or her doctor about considering hospice care:

      1.  Two or more episodes of pneumonia or other serious infections during the past 6-months

      2.  Difficulty eating and swallowing, even with feeding help, that results in weight loss of 10% or more over the preceding 6 months

      3.  One or more skin pressure ulcers that are not healing

 Although starting hospice care for a loved one is a somber and painful experience, just remember it will help both you and your loved one have the highest possible quality of life during the precious time that is left.

Where to Find Additional Information: The Hospice Foundation of America (www.hospicefoundation.org) is an excellent source for more information on this topic.