My Positive Experience with Hospice Care

My Positive Experience with Hospice Care

Written by Larry Kellerman (MSA Coalition Board of Directors and Support Line volunteer)

I remember the day as if it was yesterday. My wife’s physical condition due to the neurodegenerative disease multiple system atrophy (MSA) was such she could no longer make it to the doctor’s office for a checkup and her doctor had said, “I’ll do a house call.” As several of my wife’s friends stood by the bed and visited, the wonderful doctor who had cared for her for over three years pulled up in front of the house and walked up the driveway.

At the end of her hour-long examination and the ensuing discussion, Dr. P stood up and said “I think it’s time to get hospice here to help both of you.” She left that August 4th with assuring words that we both would have much needed support soon. Three days later we had our first visit by the hospice nurse and by the end of the visit had been given a glimpse of the challenges and benefits of hospice care.

When it’s time to consider hospice care in multiple system atrophy

Hospice care comes at a time in a patient’s life when he/she is not expected to live beyond six months, either because of disease prognosis or the patient choosing to reject a lifesaving treatment. Hospice care is provided by a team and part of that team’s mission is to support the goal of the highest quality of life possible for the patient. In the end hospice care is vital when caring for a loved one who has chosen to stay at home during those last months.

Once hospice has been certified, identifying a good hospice provider is important. In our case the doctor recommended a provider and we stayed with them until the end. There have been individuals who have called the Multiple System Atrophy Coalition call line to discuss their hospice experience and told me they decided to change providers. The goal should remain the same no matter the hospice provider: the best quality of life (QoL) possible for the patient.

Hospice is a team effort

They bring to the team the nurse, support staff, a doctor, a social worker and specialists if necessary; you bring your own skill set and all the friends and family members who support the patient. What I found in the six months we had hospice staff at our house was a good integration between their team and my wife’s friends. In part it was because all of those involved saw what caregiving for an MSA patient did to the health of the caregiver; in part it was because everyone made a real attempt at being supportive of each other.

Hospice staff members are not perfect. You do want to be very aware of what is going on when they are at the house. There are many examples that can be provided by other caregivers, but I can share one example that illustrates potential issues surrounding hospice care.

There came a day when my wife needed to have a catheter inserted and two hospice nurses arrived to do so. As one nurse bent over to insert the catheter her long hair fell over the pubic area and needed to be brushed out of the way. It was the first catheter for my wife and within a few days she had a full blown urinary tract infection (UTI). I called the hospice doctor and told him what happened. He said that is not acceptable and the next time make sure the nurse understands that. So, guess what? A couple of weeks later the catheter needed to be changed and the same nurse arrived, again with her hair down and loose. I had to tell her to put it up, which she did and then completed her task.

I found hospice staff do listen to the caregiver and friends. To address the issue above they allowed me to sit in on a weekly staff meeting and discuss it and a couple of others that had arisen. In the short time I was there they listened and the doctor on the staff reiterated how important it is to follow best practices.

Hospice CNAs are quite important to the overall care of the patient. It is the CNA who helps the caregiver give the patient showers, clean and dress any wounds or open sores and keep the patient’s immediate environment as clean and orderly as possible. The several CNAs who rotated through our house for the six months they served us did a very good job being my “right hand person.”

More importantly, the CNA who had the most profound impact on my wife and me made a special effort to help her feel as much like a woman as possible. Early in the disease progression I had learned how to put earrings in pierced ears and brush hair, and even practiced a few times putting on fingernail polish – not so good at that! The CNA came in and immediately understood there’s more to being a woman than earrings and brushed hair. She would brush and style the hair, put on lipstick and paint her fingernails for those days when visitors would come over or when my wife had a rough night. She did her best to ensure the “best QoL” mantra was followed.

All through this time the hospice social worker and nurse made their regular visits. The nurse’s job was to check vitals and any sores or injuries the patient suffered and ensure there was the needed supply of medications. The nurse would order the meds and bring them to the house, allowing me the opportunity to stay home and be with my wife. The social worker was also a regular and her goal was to help us with our bad days and to be another caring individual with whom we could share those feelings that arise when dealing with a terminal disease known as “Parkinson’s on steroids.” We both looked forward to her visits.

As I noted above, hospice is certified when the doctor ascertains the patient has about six months to live. Sadly in our case, entry into hospice turned on the death clock and six months to the day my wife passed. That day the CNA was not scheduled so it was just a good friend and I who were there as my wife passed peacefully. I immediately called the nurse and within 15 minutes he was there to certify death. Hospice staff called the funeral home to come pick up her body and ensure all her final wishes were met. The social worker arrived to make sure I was doing okay and see if she could be of help. To the end of this six-month saga hospice served us well.

Hospice can benefit both the patient and the caregiver

Caring for a terminally ill patient is difficult no matter the disease. In the case of MSA, a relentless and devastating disease, caregiving is 24/7 during the last months of life. Support both emotionally and medically becomes so important to the health of both the patient and the caregiver. Hospice care can be an integral part of that support. I hope your experience is a good one and encourage you to share your story so that others can understand the positive role hospice care plays. With a goal of “best quality of life possible” hospice can help attain it. I hope your hospice experience meets that goal for your loved one.

MSA Awareness Blues

MSA Awareness Blues

Written by Larry Kellerman

Life has a way of defining us rather than vice versa. Each and every day there are innumerable interactions, any of which could have a different outcome. The goal is to be prepared whichever directions those interactions might take, which we all know is easier said than done.

Sometimes those interactions are job-related, but often they occur in our daily lives. These interactions might be positive; meeting a new friend or finding a new place to eat. Others, not so much; seeing an accident or encountering some environmental danger.

Which of the many interactions over time cause the brain of a future MSA patient to start producing or altering the alpha-synuclein being produced, thus causing the neurodegenerative disease multiple system atrophy?

[This is written for a blog post on the Coalition’s web page but is for any and all visitors who come for the first time. Please remember when reading these bulleted points there is a reason for this post; advocacy is an on-going process and each time may help bring one, maybe ten, into the advocacy fold]

  • It’s rare – 4 in 100,000 patients will be diagnosed with MSA, 8-9 in 100,000 for those above the ages 40-45.
  • It is sporadic – To this point no known cause, genetic or environmental, has been found; to this point it is not known to be hereditary
  • No treatment – there is not one treatment that has yet made it past Phase 3 status in the clinical trials process
  • No cure – Yep, that’s right! It is a d____ s________.
  • How to solve these problems – raise awareness of the disease and monies for the premier funding entity in the MSA community, the Multiple System Atrophy Coalition, and its research grant program.

Raising awareness is a tricky proposition and many advocates have tried multiple methods to bring attention to the disease and sometimes to raise money. There are marathoners, half-marathoners, runners, bicyclists, lemonade stand entrepreneurs, and many others. All help raise awareness and oftentimes money. People wanting to beat this Beast.

Two blues aficionados and one blues artist extraordinaire, offer the BEAT MSA! Fundraiser on October 3, 2019. My wife Colleen, who brainstormed with me this entertainment approach to fundraising, thought raising awareness was best accomplished when people are enjoying themselves. This event, held on World MSA Day, will bring together some of the best in local and national blues artists, good food (included in ticket price) and silent auction items from college basketball programs and blues artists. There will be bands playing, artists soloing, wonderful blues singers singing and guitarists playing. And we can’t forget the skins or the great bassists laying down the beat.

We want it to be an enjoyable and memorable night! Come join us or email me if you have any questions or want to help.

The pictures here show Colleen’s joy at crossing Walt Disney World off her bucket list; this trip in late December 2013 was just two months before our second fundraiser – but that’s another story.

Written by Larry Kellerman, MSA Coalition Board of Directors & Support Line Volunteer