As our team disseminates PlanYourLifespan.org to individuals, groups, and organizations in our communities, we have found that almost everyone has a story or connection related to planning ahead (or not planning) as we get older. Whether it is a story about themselves, their parents, a loved one, or a friend, PlanYourLifespan.org often brings up situations about how people may have been affected by this topic.
If you are planning to introduce PlanYourLifespan.org to others, it may helpful to introduce it first in the context of a personal story or a testimonial to get the initial buy-in. This may be especially important with those individuals who may not have previously given much thought to some of these potential issues. We notice that establishing that personal connection or story that makes the sharing of PlanYourLifespan.org effective.
If you have a personal story or experience about planning ahead and unexpected health events as we get older, feel free to share that with your targeted audience if you are comfortable. Or, use some of the testimonials some of our patient partners/stakeholders have shared below. These may be helpful when you are first introducing and sharing PlanYourLifespan.org with others.
Caregiver to Aging Parents
In 2013 when we began the Plan Your Lifespan (PYLS) project a few year ago, both of my parents were healthy and living in different towns in southern Iowa. They had been divorced for years and both were active in their communities and able to manage independently. However, in 2015 my mother suffered a stroke and was no longer able to live without assistance. So, after an unsuccessful attempt by my sister to provide care for my mother, my husband and I made the difficult decision to move back to Iowa to become her fulltime caregivers.
My mother moved in with us and while she had spent considerable time in our home, often visiting for 8-12 weeks at a time, this new arrangement was completely different. She required medical, personal, and emotional support and it became apparent soon we were not able to provide the level of care she now required. A few months later, she moved into a long term care facility near my younger sisters and her trusted physician. In this new environment she had 24/7 care. The following year my mother’s health had improved to the point she was able to move into an assisted living situation in the same facility. Here she receives the support she needs but can be more independent in her own small apartment.
Unfortunately, just as my mother’s health was improving, my father began complaining of severe back pain and was diagnosed with a spine fracture related to multiple myeloma which was a new and unexpected diagnosis. That same year we began providing care and support to my father. Soon after his diagnosis he purchased an independent apartment in the same senior community where my mother is living. Currently my father is receiving chemotherapy and coming to terms with selling the home he has lived in for years and moving about an hour away to a new community.
I had no idea when we began this study that it would have such a significant impact on me personally. One of the features of PYL that I am most drawn to are the videos of older adults talking about planning for aging. The principles I have learned from my years of work in the aging field and nursing research are reinforced by our work on PYL- communication and knowledge about options are KEY to a successful aging process. However in my personal life, my family did not speak much about aging, it was just not an acceptable topic. My mother has shared her end of life and funeral desires but never discussed what she wanted for the years prior to the end of life. And, my father has never admitted he is aging (he will be 80 years old this year). He still will not admit that he needs help, or needs to slow down to maintain his new normal or focus on treating his condition.
Much of my frustration over the past year has come from a lack of communication with both of my parents; they’re not being able to clearly articulate their issues, concerns, and needs or my inability to comprehend what they “really” meant when they were communicating. I have no doubt they were just as frustrated at times by similar issues. One of the most important things I have learned on this caregiver journey is I WILL talk with the next generation about my desires for aging. I do not want my children to go through the frustrations and misunderstandings I have experienced with my parents.
Know Your Limits
My idea of comfortable independent living after my husband passed away was to continue my latter years alone with my Shih Tzu in a 2-story townhouse. I was especially attached to having a laundry room where I could leave clothes unseparated until I was ready to wash them and of course, the attached garage.
It did not occur to me that pushing my 75-year-old body with a hip replacement up and down stairs several times a day put my life at risk. One very late night after an active day, I recognized how tired I was as I climbed the stairs. It was then that I had the frightening thought that no one would know that I had fallen for at least 8 hours. I got my wake-up call….KNOW YOUR LIMITS!
I gave my family one of the greatest gifts ever! I searched and chose an independent senior living community with a space that I knew I could enjoy. Within 4 months, I purged old papers and threw away assorted stuff. I asked family members to make arrangements to select and move furniture and knick-knacks that would not fit in a 900 sq. ft. apartment.
Change isn’t always comfortable. Leaving familiar surroundings can be overwhelming often making moving day. It takes time to get comfortable taking an elevator to walk the dog or save quarters for the laundry machines down the hall. However, I have no regrets because it was MY decision and MY choice.