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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.

Meeting A Mission One Support Line Call At A Time

Meeting A Mission One Support Line Call At A Time

Written by Larry Kellerman

I am the MSA Coalition support line volunteer for a coalition representing a very rare and devastating disease. I have found being that person who can share resources, advice, a shoulder to cry on and the voice of hope brings people back again and again to share their thoughts and questions. Every call helps me meet the mission my deceased wife and I developed during her last months suffering from multiple system atrophy (MSA), a rare and terminal neurodegenerative disease. “Help others who are on this da#ned journey” was her lament that led to me dedicating my life to be a support for MSA patients and caregivers.

One caller in particular is the reason for this story. I’ll call him Gary but that is not his real name. He first called the call line about 18 months ago and after our first conversation he asked if he could call back if he had any additional questions or just needed to talk. I told him it would be my pleasure to be there for him and put his contact information in my contacts list.

Over these last 18 months we’ve probably talked a dozen times. He’d call when the journey was getting difficult or when he’d see a change in his wife’s condition and needed to have some reassurance. Over those months we became comfortable talking to each other and a couple of times advice I shared helped make a positive difference in his wife’s treatment and condition. During that same period of time I heard in his voice a resolve grow that was not there at first, a resolve to be a positive part of the MSA journey.

Two weeks ago he called and told me how quickly his wife had taken a turn for the worse. She was now unable to hold herself up and leaned to one side, had difficulty eating and was very fatigued. We talked about what that might mean and I shared some advice heard at a recent support group meeting; “If there’s a change for the worse in an MSA patient it’s quite likely to be a urinary tract infection.” He was sure they were giving her antibiotics to prevent a UTI but would check. When the conversation ended I could hear in his voice that worried sound of “could this be the last time a symptom impacts her like this?”

He called four days later and when I took the call I could hear cheerful voices and laughter. He told me he wanted me to hear how crazy it was now that his wife was home and the children were there visiting. He even introduced me to his wife and we got to exchange a few words. Her voice was weak but I could understand everything she said. He got back on the line and said he just wanted to share that family time with me. Talk about feeling humbled as I hung up.

Early Friday evening the phone rang and Gary’s name appeared. I immediately answered and said “Hi.” He said to me “Larry, she passed away today, and we were all here when she did.” He shared some of the information about those last hours with the family and calling the hospice nurse to come out, only to have his MSA wife pass before the nurse arrived. I think at that point I was the more sentimental of the two of us, trying to hold back the tears of “S#*t, another MSA patient taken from us.”

Then he shared something that made my night, week and maybe even my year. We had talked a couple of times during that 18 months about his wife donating her brain. Just days before she passed he called a nearby research center that has a brain bank. Over a few hours they confirmed his wife’s approval of the harvest, contacted the funeral home and pathologist who would complete the harvest and made the process very smooth for Gary and his wife’s donation.

He told me he had asked them how many MSA brains they have in their bank and they said “less than twenty.”

I paused for a short time before words would come out of my mouth. “Gary” I said. “One of those brains is my wife’s. You have donated to the same brain bank that has my wife’s brain.”

One day in the life of a support line volunteer.

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