the journey, a dear friend insisted on helping, and she opened me up to help from many other friends. I very much needed this ability to get out and focus on myself regularly. As PSP caretakers, we run a marathon not a sprint. To function effectively as caregivers over a long haul, it’ s important to stay healthy and happy.
• Embrace new friendships and relationships. If you are lucky enough to have a local support group, check it out. I found Sarah and Bob, a couple in Austin that were on their own PSP journey. Sarah and I became each other’ s support group, and we remain very close friends to this day.
• Live every day as well as you can. Be a problem solver. Smile and laugh as much as you can! It’ s important to be positive and to enjoy each day. The days ahead of you are not likely to be as good as your today. Having breast cancer thirty years prior, I had learned and embraced a philosophy to enjoy every day with whatever it brings— and to keep my sense of humor and to laugh as much as I could. These attitudes gave me freedom to observe Harvey objectively and, as he declined, to problem-solve and determine new daily approaches and actions that could help.
• Plan for what comes after as the PSP journey progresses.
• Consider donating your loved one’ s brain to research through the CurePSP Brain Bank at the Mayo Clinic. It’ s an important way to contribute to progress in fighting these diseases. This decision can’ t be last-minute, as there are steps and plans that must be done in advance. People at the Brain Bank can assist you with the details of your plans.
• Think about things you will do when your loved one’ s journey is done. What friends and family do you want to catch up with? What travels would you like to take? Are there volunteer areas you care about? Be involved and lead a full life!
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X: Thoughts about Hospice
Al Nixon, Steve Garcias, Roxi Padrid, and Fran Gardner
From Al Nixon
My wife, Eileen, was under hospice care for four weeks at home before she succumbed to aspiration pneumonia. As an overwhelmed caregiver 24 / 7, the thought of hospice never entered my mind despite her struggle with PSP symptoms and pain that can accompany them. Fortunately, my two youngest daughters( both in healthcare) said to me,“ Dad, it’ s time for Mom to be in hospice care.” This we did, and looking back, I can offer four important takeaways from my experience.
First: I waited too long to call hospice. Eileen suffered from severe abdominal pain due to constipation for several months prior to engaging hospice. During this period, she also had a urinary tract infection( UTI) and a bout of aspiration pneumonia. Hospice was very responsive and provided her with pain relief through medications( morphine), laxatives, and stool softeners. The hospice speech therapist came to help us with food preparation for her swallowing issues, and hospice provided home healthcare aides several times a week to assist with bathing and personal care. Hospice would have improved Eileen’ s quality of life immensely had I called them three to four months sooner.