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4 Fears Surrounding End of Life Care and How to Overcome Them

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Many families find conversations about end of life care difficult to broach with a parent or aging loved one, but surely they have come up.

Perhaps you were driving away from a nursing home visit with your mother when she told you she “never wants to live in a place like that.”

Or, maybe you were sharing coffee after a family funeral when your father told you that he “never wants to be hooked up to ventilators like Uncle Mark was.”

Statements like these open a window into their desires as they relate to end of life care, but they don’t provide you with the full picture you need to adequately plan ahead.

The 40-70 Rule® is a good rule of thumb: have an intentional conversation surrounding these concerns by the time you are 40 and your parent is 70. But no matter your age, it can bring immeasurable peace of mind to communicate openly with your family about end-of-life fears and wishes so you can plan ahead to ensure those wishes are honored.

Here are a few of some of the most common fears and ways to overcome them.

Fear #1: “I hate the thought of having feeding tubes and ventilators keeping me alive.”

What you can do about it: Consider establishing a living will. Living wills detail an individual’s treatment preferences in the event he or she is unable to make those decisions for him- or herself. The requirements for living wills vary from state to state, so you should also consider having a lawyer assist with this. Many lawyers will prepare a living will as part of an estate planning package.

Fear #2: “I’m afraid I will end up in a nursing home, and I don’t want to die in a hospital or institution.”

What you can do about it: There are many options for end of life care outside of nursing homes and hospitals. Make sure that you have a conversation with your parent about his or her wishes and look into home care options together so that you are prepared when the time comes.

Fear #3 “What if I get dementia and can no longer make my own decisions?”

What you can do about it: It’s wise to have your parents designate a trusted person with power of attorney (POA) who will act on their behalf in the event that they are no longer able to advocate for themselves. Designating a person with POA will give them peace of mind that their care wishes will be met regardless of their mental acuity.

Fear #4: “I don’t want to lose my independence.”

What you can do about it: Look into the home care options in your area so that your parent can have the help they need to continue living independently at home without feeling like they have to rely on you to help meet their daily needs.

The best way to address the end-of-life fears your parent may be struggling with is to communicate clearly with them about their wishes in advance. If the topic doesn’t come up naturally, set up a specific time to talk.

Try to remain open and put yourself in your loved ones’ shoes to better understand their wishes and the reasoning behind them. Be sure to record your discussion by taking notes so you have something to refer back to when making plans and decisions in the future.

For many, it’s normal to feel anxiety surrounding this topic, but know that having open communication with your loved ones will likely give your family a sense of peace that will far outweigh any anxiety you feel broaching the subject.

For additional guidance when it comes to discussing end-of-life wishes with your loved ones and developing a plan, download the 40-70 Rule: An Action Plan for Successful AgingSM.

Last revised: July 18, 2014

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Thoughts and stories from others
  1. December 4, 2018 at 4:32 pm | Posted by Gloria Northcraft

    My mother has outlived all of her assets and never prepared for future end of life issues. I am her daughter caring for her at home with very little support to no support from my older brother and his family. I am 67 and widowed and have been doing this for at least 10 years. My son took care of her for 4 years to give me a break. I recently addressed my concerns regarding my mother's lack of funds for a proper funeral costing $8,000.00. She has half this amount from a cashed in life insurance policy and I asked my well off brother if he could pitch in and help her with the remaining 4,000.00. He literally blew up at me and refuses to offer any help with her burial. I feel like since I have done the hard part then that's the least he could do. I am very frustrated and since I amnunemployed, I haven't the means to fund what is needed to pull this off. I have decided to cut all ties to him and no longer take his calls. He rarely visits but wants only to spend a few minutes conversing with her by telephone. I am furious and saddened by this outrage. Any advice? Thank you.


    • December 24, 2018 at 2:53 am | Posted by Louise

      Hi, I too am the caregiver for my elderly mother with an older brother that pretty much leaves it all to me. The occasional visit, phone call and email is about as much as he can manage. I agree with you that if you're doing all the hard work, the least they could do is help financially. Problem is, they won't. I have tried to accept this and remind myself that at the end of the day, my conscience will be clear. I have tried to look into funding for funeral costs and found that some funerals can be 'just the basics'. Dignified will have to be enough. It's not our fault we are in this position. I do feel for you, though. It's a tough situation and I admire you for your patience. Stay strong. Louise.p


  2. November 26, 2018 at 10:00 am | Posted by Valerie Reid

    40-70 rule is a very good idea. That is something I need to talk with my children about.


  3. March 3, 2018 at 5:11 pm | Posted by Antionette Thomas

    My parents are 77 and 74. A few years ago, I openly discussed with them to put on paper what they want done to/for them in case either/both contracted Alzheimer's/Dementia. And I also had my dad get it notarized so that there would be no problems with siblings. They agreed and I'm glad. It's also good to have on record to have a capable person make medical decisions when the time comes.


  4. April 25, 2016 at 1:40 pm | Posted by Lois

    I care for my husband that has dementia and other problems and the dementia is getting worse . We are both 79 years old and it's hard on me having to do everything . As it gets worse I am up on the air about what to do . Try to keep him home with caregivers or place him in a nursing facility . He was in one two years ago and really hated it so what does a person do . My children do help at times but all have to work . Thanks for listening Lois


  5. August 17, 2014 at 4:56 pm | Posted by comfort Adesida

    most of my client that I have taken care of before that live in nursing home preffared to be home for caregiver to be caring for them bet also be indepeendenceter than nursing hm .and want to be indep of their own. They need encourament.


  6. August 11, 2014 at 8:29 pm | Posted by Joyce Cagle

    i have a client no relation is talking to me about dieing and she wants to tell her family not to worry and not to be sad but as for alone as she is in her alzhimers she canit get out the words and keeps asking me what to say


  7. August 8, 2014 at 12:50 pm | Posted by Mark Mann

    I am currently caring for my 96 year old grandmother. I love her so much and want only the best for her. It is difficult to know (or gage) what is good and reasonable care. We believe that "just because something can be done does NOT mean it should be done." For us this includes artificial respiration or feeding. My grandmother does have a living will in place with a DNR. She is well into the time when hospice could be called in, however we are going day to day. She is not in any pain and seems comfortable, sleeping most of the time. We as individuals have always been VERY independent so I is unclear how any additional intervention or help would be of value. May I have some feedback or comments from anyone experiencing similar circumstances. Thank you! God Bless.


    • November 24, 2014 at 10:06 pm | Posted by Madelyn

      I understand your feelings. With my experience with hospice...the benefits are enormous. Since you do not know for sure what signs and symptoms your grandmother may have as she nears death ie: short of breathe, terminal restlessness, pain, anxiety, and more...having Hospice on board is added support so that you won't want or have to take her to the ER if she has these most uncomfortable symptoms. Also when someone dies in their home without Hospice you will need a medical examiner and police involvement where as with is an expected death and does not require you to call anyone but Hospice when she dies or before for management and emotional support. No harm in using Hospice and cost is paid by Medicare. She paid in all her life I would imagine for this service. Just a suggestion. call for an appointment and ask questions. no harm in asking. Peace to you and your grandmother.


  8. August 6, 2014 at 8:47 pm | Posted by Sally Czaja

    re POA: A contingent POA takes effect when the principal is incapacitated; a durable POA takes effect as soon as they sign it. We found the latter useful when my sister didn't have the energy to deal with bills, bank accounts, and insurance companies but was not incapacitated. re home care options: Don't think home care is the final answer for living independently. If someone loses control of their limbs, they will be dependent on someone for everything even if they are at home. That's a big mental adjustment.


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