It’s easy to forget when caring for someone with Alzheimer’s that the person is a whole person. We recently celebrated mom’s milestone birthday, which by any measure is an achievement. Mom is at an age when many people are diagnosed or suffering from other diseases. In that respect, she is no different from her peers. She has health issues other than Alzheimer’s disease. One such issue led us to hospice and then to a confusing discharge from hospice.
Other critical diagnosis
Back in January 2017, just after moving into a new memory unit, mom was whisked off to the hospital one morning suffering from other physical problems. I got the call and rushed off to meet her in the emergency room. We spent the day there with mom having diagnostics and images. The doctors diagnosed mom without doing more invasive and uncomfortable tests. They communicated a high level of confidence in their diagnosis. So their confidence, combined with my decision not to treat, took the need for further, more invasive, testing off the table.
Mom spent one night in the hospital waiting for the final test results. The clinical team pressed me for further authorizations but I did not want to put mom through anything more. That was mom’s directive. While at the hospital, I learned what to expect going forward and how to care for mom. She now had a parallel diagnosis to Alzheimer’s disease to incorporate in to her care plan. Mom could decline and die from this diagnosis well ahead of Alzheimer’s disease.
Introduction to hospice benefits
I met the hospital-based hospice nurse to get information about services and enrollment in the hospice programs. Hospice is a Medicare Part A program that everyone is entitled to in the last months of life. In order to access these benefits, a doctor and the hospice medical director must certify that a person has a serious life-limiting illness. The standard is if the illness runs its normal course, the person would have less than 6 months to live. Given what we learned in that 24 hours, my mother qualified to receive hospice benefits related to this new diagnosis.
My mother would continue to live in the memory unit, so hospice services would be provided in that setting. Hospice would assign a team that worked together. Services included nursing oversight, pain management, appropriate therapies, social workers and volunteers as well as grief counseling for me. I didn’t see a downside with all the wonderful services and caring people on the hospice team. So I enrolled mom and on we went integrating hospice into the memory unit.
Hospice supported both my mother and me. It was a fluid situation with many factors effecting the condition of my mother. We had solved some of her eating problems and she was putting on weight again. With music therapy and social activities, she seemed to be rebounding and thriving. But after 6 months she had a sudden, fast decline. Hospice went into crisis mode with around-the-clock nursing for several days. I believed in my heart that when she closed her eyes one night I wouldn’t see her conscious again. I spent days holding her hand and talking to her.
First insight into the downside of hospice benefits
On the fourth day of crisis care, mom opened her eyes. She took food and fluids again and on the sixth day got out of bed and in her wheelchair. The crisis passed and we all resumed our normal schedules and lives with one exception. My mother, the Alzheimer’s patient, lost some of her already limited skills and abilities that she had prior to the crisis. Those skills were her only key to having an ounce of independence and choice. My mother could no longer use her feet to propel herself around in her wheelchair. I felt heartbroken. She looked lost and sad and stopped smiling.
I inquired about rehab or therapy to see if we could help her get back those skills. She was always so happy cruising the halls in her wheelchair, exploring and visiting. She smiled and laughed and held anyone’s hand who stopped to greet her. But here’s the rub. My mother was on hospice so she didn’t qualify for any life enhancing or curing treatment, including rehab. It was up to me then to rehab my mother. I was determined to rebuild her skills and give her back her level of independence and choice.So I began my own rehab program and worked with her every morning and every afternoon to teach her how to use her feet again. I got down on the floor and moved each foot and verbally coached her. Progress was slow but she started to move her feet ever so slowly. I’m convinced that my mother’s will took over. She wanted to move herself. It took two weeks for her to get back her skills and “independence”. As usual, we made a great team and made it happen.
Life moved forward the second half of the year and we became part of the fabric of the facility. Mom ate well and put on weight and lived comfortably.
Learned that discharge from hospice is possible
Despite a few health setbacks, the team encountered problems re-certifying mom’s hospice services. She had “outlived” the typical duration of hospice benefits and the hospice team was having more difficulty in establishing her need for these services. So my mother was discharged from hospice after about 18 months. She continued on with her facility-based care.
Prior to her discharge from hospice, I felt anxious and alone again. Hospice services provided me with a sense of security. All those eyes on mom and experts to consult supported me. They shared the responsibility that I previously shouldered myself. I glimpsed that loneliness over the last couple 60-day re-certification cycles. It’s another element of loss when I’m struggling with the loss of my mother every day.
A plan to help mom live, not die
I mentioned this change and my uneasiness to the facilitator of the support group and she told me about another Medicare program called a nursing home plan. Under this plan, a nurse works on-site every day who would get to know my mom and follow her condition and needs very closely. I met the on-site nurse and, after a lengthy conversation, realized it was a perfect transition from the hospice services. She was competent and personable and put herself right there on my page immediately. She understood what I wanted for my mother. So I enrolled mom in the plan with only a six day gap between losing hospice and the beginning of the nursing home coverage. I was rebuilding my team.
From my experience with the hospice team, I have positive things to say about enrolling in hospice benefits. The team was knowledgeable and compassionate and, even months later, team members show concern and caring for us. They are all wonderful people and faced with an end of life crisis, I would certainly re-enroll my mother in the hospice program. I can do so at any time that she would qualify.
Adding to my stress and anxiety
The one downside was the re-certification process. Under normal circumstances when a patient is failing, the family doesn’t even know about this process. The hospice team simply provides evidence to support the decision to continue benefits. In our case, mom was improving and re-certification was challenging. I tracked and communicated all indicators of my mother’s failing health with the hope that I would continue to have the team with us. That level of involvement raised my stress and anxiety.
Under the nursing home plan, my mother accesses Medicare benefits that help her live more comfortably. For example, she receives therapy to prevent and ease some of the leg and muscle contraction that restricts her sleep positioning. As appropriate, the nurse will assign other services and advocate for my mother’s comfort while she lives. This plan fills a different need than hospice.
I learned about these programs and issues from experience. Everyone’s journey and situation is different. I base my opinions entirely on the uniqueness of my journey caring for my mother. Hopefully our story provides a tiny bit of insight that could be relevant to someone else considering these decisions.
Interesting information about both types of plans: read more about hospice benefits or the Optum CarePlus nursing home plans.
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