September 18, 2020
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Overcoming fears surrounding End-of-Life care

By: Julie Ann Soukoulis
June 14, 2019

Communicating about end-of-life care and how to broach this topic with your aging parent or loved one can come up in simple everyday conversations.   They could begin as simply as sharing coffee after a family funeral and your father says “I never want to be hooked up to ventilators like Uncle Steve was,” or driving away from a nursing home visit and your mother says “I never want to end up in a place like that”. 

Statements such as these can give you a glimpse of what your loved one does or doesn’t desire for their end-of-life care. What they don’t provide you with, is the full picture you need to adequately plan ahead. The best plan of action is to have intentional conversations surrounding these concerns when you’re not in crisis, before there’s a reason to need such conversation.

Fear #1 I don’t want to die in a hospital or an institution like a nursing home.

How to manage this: There are many options for the end of life outside of nursing homes and hospitals. Educate yourself on what these options are for yourself or your loved one. Look into homecare options with your loved ones, or investigate what an aging community with various levels of care would look like for them.   Knowing your options and all involved in them ahead of time, will help when it’s time to make a decision if /when change is necessary.

Fear #2   I don’t want to lose my independence.

How to manage this: In today’s world there are so many devices & apps that offer opportunities to make a living at home as long as you can a viable option. Look into homecare options too so that your parent or loved one can stay living independently in their own home without feeling like they have to rely on family members to meet their daily care needs.  Often home care might be a temporary solution while a senior is ill or recovering at home from an injury.  A little bit a help early enough can ward off long-term struggles and keep your aging loved one living happier, safer, healthier and independently in their own home as long as they possibly can.  As a home care provider myself, I always remind our clients - we are not here to take your independence from you, rather to help you maintain it.

Fear #3 What if I get Alzheimer’s disease or dementia?

How to manage this: Designating a loved one with POA (power of attorney) will give that person the power to advocate when they no longer can for themselves. Let them designate a trusted person in their life with this responsibility and it will give your loved one peace of mind- that their care wishes will be met regardless of their mental acuity.

Fear #4   I hate the thought of being on ventilators to keep me alive.

How to manage this: One of the best gift you can give yourself and your family is to establish a living will. Many attorneys will prepare a Living Will as part of an estate planning package.  This investment is a gift to yourself and your loved ones as it outlines the treatment preferences in the event he or she is unable to make those decisions for him or herself. Here in California we have the POLST form (Physician orders for life-sustaining treatment). It is a medical order signed by both the patient and the physician that specifies the types of medical treatment a patient wishes to receive towards the end of life.

Culturally it’s normal to feel anxious talking about death.  Your parents may struggle to communicate clearly what their wishes are in advance of the end of life care. The best way to address it is to simply carve out time and be intentional with the conversation if the opportunity doesn’t naturally present itself.  The best conversation is where you get to ask questions to understand their wishes and reasoning behind their choices.  Do be sure to record your discussion by taking notes so you have something to refer back to when making plans in the future.  Having an open communication with your loved one will give everyone involved a sense of peace which will outweigh the anxiety leading up to the conversation.

Julie Ann Soukoulis is the owner of Home Instead Senior care office in Rohnert Park, mother of two and passionate about healthy living at all ages. Having cared for her own two parents, she understands your struggles and aims, through her website, to educate and encourage seniors & caregivers. Have a caregiving or aging concern?  She’d love to hear from you at 586-1516 anytime.