Have you thought about end-of-life planning for you or a loved one?

End-of-life planning can be tough to ponder, but it is extremely beneficial

Jennifer Lynne avatar

by Jennifer Lynne |

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My mom passed away a few weeks ago. Over the past six years, it has been a great honor and privilege to be able to care for her. It was an opportunity to show love and appreciation for the person who helped shape my life and repay her for all she has done for me. Caring for my mom was sometimes difficult, but it was an incredibly rewarding experience.

My mom had a decent quality of life until her final three weeks. She developed a small bowel obstruction caused by an abdominal hernia. Hernia problems seem to run in my family, possibly due to Ehlers-Danlos syndrome. I’ve had my share of hernias and small bowel obstructions, too.

The surgeons decided my mom would not have a good outcome with surgery. We hoped and waited for the obstruction to resolve on its own, as it had several times before, but that didn’t happen. She spent her final two days in hospice care.

My mom was very clear about her final wishes and had worked with an attorney to ensure documents were in place to make my job easier. For my mom, this involved creating a will, setting up a living trust, appointing a power of attorney, creating healthcare directives, and other essential documents. Her planning provided me peace of mind knowing that her wishes were being respected.

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The greatest gift

I consider her end-of-life planning one of the greatest gifts she could have given my family and me. I knew she didn’t want to be attached to machines, such as a ventilator, for the final years of her life. This knowledge helped me make difficult decisions on her behalf during her final days.

Even though she wasn’t terminally ill, we occasionally discussed her eventual passing. Maybe because we lost my father unexpectedly when he was just 58, we both realized how quickly life can change. Sometimes she would have a thought on the subject, write it down on a piece of yellow paper, and hand it to me. My grief is immense, but I am comforted somewhat by knowing I am carrying out her final desires.

Nobody likes to think about their eventual passing. Having helped my mom through her last days on earth, I realize that I, too, need an end-of-life plan. Throughout my life, I have had some close calls with death, mostly related to bleeding complications from hemophilia B and von Willebrand disease.

End-of-life planning is essential for everyone, especially those with a chronic condition like hemophilia. End-of-life planning lets you control your life and how you want your final arrangements handled. You can choose the type of funeral and burial you would like, list your wishes for organ donation, and designate who will be responsible for settling your estate. Making these decisions ahead of time can provide a sense of peace of mind, knowing that your wishes will be respected and carried out. You will also ease the burden of these decisions for your family members.

Thanks for loving and guiding me, Mom. Rest in peace.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


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