What a difference a few days can make…

When I was at Eason House after work on Thursday, Mom was quiet but very, very sweet. She told me that my shiny necklace was pretty, gave me a big hug, and laid her head on my shoulder as we sat together on the sofa. She dozed off repeatedly, but never for more than a few minutes at a time.

The last time she woke up, she surprised me by wanting to go back to her bedroom. Most nights, she falls asleep in the living room, so this was interesting. I helped her out of her robe, and she laid right down in bed. As I stood there rubbing her back until she fell asleep, I momentarily flashed back to standing over the crib, rubbing Jess’ back until she would fall asleep… Back then, I certainly couldn’t have imagined that this is where we would be 26 years later. Life is funny that way, isn’t it?

Fast forward to today. When I arrived, Mom and Rene were just heading back into the house after sitting on the porch for awhile. The heat was a bit much, and the woman who was so sweet and loving a few days ago looked thoroughly p*ssed off at the world. Somewhere between getting out of the car and stepping into the house, I realized that it was not a particularly good day. She was edgy to say the least.

She has a very disturbing habit of smacking her head with both hands, in what appears to be a fit of frustration. It’s one of the things I hate the most, because she just looks so lost and so sad. When she does this, I often wonder if she’s having a moment of clarity and realizing that something is wrong with her brain. The doc says that’s not possible, but I don’t buy it – science doesn’t get it right 100% of the time.

Anyway, today, she was doing it so much that I thought perhaps she had a headache. Unfortunately, we’ll never know why she does it or what’s going on in that mind of hers, but whatever it is, it has to be awful for her.

One thing was certain; I couldn’t do anything to make her happy. Even as we cuddled on the sofa, she was extremely restless and was soon up and pacing. Dinner didn’t do much for her either. In fact, at one point, I thought I was going to be wearing both her her drink and a handful of baked beans… I finally gave up trying to get her to eat. She was very tired, and just wasn’t having any of it.

As I looked around the table, taking everything in, one thought washed over me with the strength of Niagara Falls. At that moment, all I could think was, “Please, God, don’t let this happen to me…”

The “H” word…

Last week, I attended a brown bag lunch on the topic of … hospice.

If you’re like me (and most of the population), when you hear that word, you immediately think of death. However, the seminar focused on “modern hospice,” which, as it turns out, is so much more than the stereotypical hospice of the past.

Amy Mestemaker, MD, was the speaker, and she really shed a new light on all of this for me. Dr. Mestemaker is a physician for HomeReach Hospice and Kobacker House here in Columbus and is Board Certified in Hospice and Palliative Medicine. Her compassionate nature and passion for her work were apparent almost instantly.

Some facts about modern hospice:

  • To paraphrase one NHPCO definition of hospice, it exists to help people live as fully and comfortably as possible, for as long as possible.
  • A well rounded hospice team includes not just a physician and nurse, but also a Chaplain, social worker, bereavement counselor, art/massage therapists, pet therapists, psychologists, home health aides, pharmacists and physical and occupational therapists. The team cares for all aspects of the patient and their family, from physical to emotional and spiritual.
  • Hospice is covered by Medicare, and provides a variety of items and services including, but not limited to, medications, equipment and supplies, labs, x-rays, transportation, inpatient respite for caregiver relief, bereavement counseling, and limited inpatient stays for acute symptoms.
  • Most hospice facilities do NOT require that a DNR be in place.
  • Contrary to popular belief, patients on hospice can receive blood transfusions and IV antibiotics, and can have feeding tubes.
  • Hospice services can be provided in the home or on an inpatient basis (i.e. nursing home, hospice facility).
  • Hospice provides for maintenance drugs such as those prescribed for blood pressure, heart failure, or diabetes. It also provides for antibiotics and even flu shots if they are thought to prolong the patients quality of life.
  • A patient can stop hospice care at any time and revert back to curative care. There are no limits or restrictions around going off of and back onto hospice.
  • To qualify for hospice benefits under Medicare, a patient must be terminally ill with a life expectancy of six months or less, as certified by a physician.  Hospice care under Medicare includes both home and inpatient care and provides benefits for a number of services that are not otherwise covered.
  • Bereavement care and counseling is provided to family members for up to a year following death.
  • Physician referral is NOT required. Hospice can visit the home or facility to assess the patient for eligibility.

When looking for a hospice, Dr. Mestemaker suggests you ask the following questions:

  • Are the docs certified in palliative and hospice care, as well as pain management?
  • Is the hospice non-profit or for profit?
  • What is the general philosophy on care? For instance, if an infection develops, will they offer antibiotics?

So, the key to all of this is that hospice is intended to prolong the quality of life, not to prolong death and suffering. It aims to provide the patient the best quality of life possible for as long as possible, whether that means managing pain, helping the patient come to terms with the end of life, both practically (advance directives, etc.) and emotionally and spiritually, and helping families through the grieving process.

The focus is on care, not cure. Emphasis is on the whole person, as a human being, rather than on a disease. A terminal illness is just that – terminal. But, hospice can provide comfort and guidance during those last weeks and months, and the ultimate gift is peace of mind for both the patient and their family.

Dr. Mestamaker admitted that the challenge is in the when. Obviously, in many cases, it’s difficult, if not impossible, to predict whether an individual has 6 months left, or 9 months or a year…or more. While cancer patients often decline steadily, patients with heart failure sometimes ebb and flow, going through cycles of good and bad. Think of Alzheimer’s patients, and the challenge becomes even greater. This is one reason that hospice care has been a hot topic in debates surrounding Medicare reform.

As I was doing my own research, I came across this article on the NHPCO website discussing a recent Brown University study on hospice for dementia patients. The article is definitely worth a read if you are facing these issues. The findings concluded that without question, those patients and families who received hospice services not only had a more calm and comfortable end of life experience, but also had a more peaceful transition and a feeling of closure.

Dr. Joan Teno, the Brown University gerontologist who led the study was quoted as saying,  “People whose loved ones received hospice care reported an improved quality of care, and had a perception that the quality of dying was improved as well.”

I found this to be comforting, as I was never really sure if/how/when hospice care applied to Alzheimer’s patients. Unlike cancer or other terminal illnesses, this disease is so nebulous in nature; it is truly the epitome of ambiguity and vague uncertainty. That being said, it’s good to know that we can benefit from the support hospice offers. The challenge will be in knowing when the time is right…

That’s what love is…

I’ve been thinking a lot lately about how blessed we are. If we have to be in this situation, dealing with this disease, we couldn’t ask for a better facility or team of caregivers – there are no words to describe what special people they are. They’ve truly become family. While there may be a few places that consistently offer care as good, I’m convinced there isn’t a single place that provides better.

The past week has been less than ideal; let’s just say Mom’s moods are changing quicker than the Presidential candidates’ campaign promises. She can be hugging and kissing the girls one minute, and five minutes later, for no apparent reason, she’ll haul off and backhand them. And, alas, do not be fooled by her frail appearance – mama is as strong as an ox, and she can hit hard!

Ups and downs, the caregivers at Eason House take it all in stride, they don’t complain, and they love their charges unconditionally. In fact, I’m pretty sure that when the phrase “unconditional love” was conceived, it was to describe people just like them. Let’s face it, these girls see it all – the good, the bad, and the ugly.

Here’s something to ponder next time you’re having a bad day at work. Suppose your typical day involved: having food thrown at you, being hit, kicked, pinched, bitten, and/or cussed at, cleaning up every imaginable bodily “fluid,” including ones you never knew existed… plus cooking breakfast, lunch, and dinner, giving showers, doing the laundry, keeping the house clean, entertaining your clients, feeding people (literally), dealing with family members, providing reports and updates to doctors, watering the flowers, answering the same questions multiple times per hour (…what day is it? …when are we leaving? … what time is dinner? -to name a just a few), and a myriad of other “duties as assigned.”

Can you imagine juggling all of that? For the caretakers at Eason House, it’s literally all in a day’s work. And somehow, through it all, they manage to smile, and most importantly, they manage to love.

I would be remiss if I didn’t mention a couple of other things. Most of these girls work 12-hour shifts. Come on, 8-hour days are for sissies! We’re talking 12-hours back to back to back, etc. And they certainly don’t do it for the riches. I have to admit, sometimes I wonder why they DO do it. Then I’m reminded that they do it because they’re angels on earth. They do it because of the love in their hearts.

I never knew it was possible for a person (who isn’t even a family member) to love someone the way these girls love my mom. Despite all the sh*t (literally), the mood swings, and the obstinate behavior, they give true, unconditional, unparalleled, no holds barred… l-o-v-e. Every.single.day.

So, all of that said, when I read this piece that describes the kind of care we all want for our loved ones, it rang so true…

Sometimes, it’s impossible to find adequate words to describe a situation or feeling. That is certainly the case when I think about how thankful I am for Eason House and our awe-inspiring caregivers.