Managing End-of-Life Wishes and Caregiver Suggestions

carveouttimeWe hired extra assistance (personal daily assistants or PDAs) for my Mom so she has someone with her and working toward her comfort daily from 8 a.m. to 8 p.m. even though she is in an Assisted Living community. She has also been moved into “hospice” care so there is a second doctor, social worker and nurse monitoring my Mom. I have found that having more people and organizations involved in her care has created more complexities to my family caregiver role. I spend a lot of time on the phone and meeting with her caregivers.

What’s become both a blessing and a challenge is that I’m getting advice and recommendations from a variety of caregivers. The three women who are with her the most continue to suggest we add vitamins to her diet. She eats very little and I understand their concern, but then feel guilty when I explain to them that my Mom doesn’t like vitamins and we feel like it would be the choice she would make if she could.

My Mom made it clear she would not want to extend a life of low-quality. I shared my angst over the idea of even having her drink Ensure. After speaking with the Social Worker from hospice and the head nurse in her Assisted Living community, I moved past my concern when I watched her enjoy the shakes and they helped sate her hunger. My bench-mark is to know that what we give her brings her pleasure. I know the vitamins would not bring her pleasure.

My siblings and I continue to struggle to know what things keep her comfortable and what things may just extend her life. It’s not such an easy black and white choice. I’m thankful that I have involved siblings that come to help, call to ask how they can help and bring varied perspectives to our journey to care for our Mom in this last phase of her life. I was lucky my parents told me how they wanted to live, as well as how they didn’t want to live. Because they started this conversation so early in their lives, it never felt uncomfortable.

This Thanksgiving, I hope you will carve out some time to start the conversation with your loved ones on how you plan to live the rest of your life. I’ve included two great resources below, and hope you might start by sharing with friends and family your ideas about how you will spend your time in your 60s and 70s; where you plan to be living and how you will be spending your time.

I am lucky my parents shared their thoughts with me. It has made a difficult journey a little easier knowing that we did or are doing what we can to honor their individual wishes. Thankful. 


AARP Roadmap for the Rest of Your Life: Smart Choices About Money, Health, Work, Lifestyle … and Pursuing Your Dreams by Bart Astor
Life after 50 isn’t what it used to be. The rules have changed. No more guaranteed pensions, retiree health plans, or extensive leisure and travel. It’s time to forge new paths and create innovative models. That’s where the AARP Roadmap for the Rest of Your Life comes in. Bart Astor, author of more than a dozen books, offers a comprehensive guide for making lifestyle decisions, growing your nest egg, and realizing your goals. It’s a positive read I highly recommend.

The Conversation Starter Kit
If you want to be the expert on your wishes and those of your loved ones, not the doctors, nurses, or end-of-life experts, check out this free resource (donations accepted) that includes easy discussion starters for the coming holiday. This doesn’t have to be a gloomy conversation. I was lucky my parents shared their wishes with me.

3 thoughts on “Managing End-of-Life Wishes and Caregiver Suggestions

  1. Dear Kay, thank you for sharing this intimate journey you are taking. You write eloquently and in such a heartfelt way. It is helpful. I am a daughter first, to my 93 year old father and am also dementia nurse specialist, so I see through both lens which has been helpful and may I add, confusing at times. Many ties, there is not such a clear view caring for and about my father. It is often about the finding the balance between choice (dad’s), risk, comfort and care. I want to share that care of my dear dad, and my mother in her journey, have informed me so much. Would I do things differently, many times, I wish I had done things differently for mum. I was in unchartered terrority at the time, albeit a nurse, as are my sisters and sister in law, we struggled. A message I convey to my patients’ families and to sufferers of dementia, is that you know your parents way better than I or any other health professional does, follow that intuition, and as you know it can be trial and re thinking. You are on a strong platform. What is also helpful to remember, is that your mother has entrusted you to do what is best for her, and she may not have anticipated fully, how her life at this stage would be, but she knows you and your siblings will do your best. That is what we can do, our best.
    Thank you for those resources.
    Warmest wishes,
    Patricia Mitchell

  2. I understand the expressed concerns of your mom’s caregivers but they are over-extending by offering that vitamin advice. Since your mom enjoys the Ensure, how wonderful that she can experience such enjoyment; taking vitamins on an empty stomach as would perhaps happen were you to follow the caregivers’ suggestions would upset your mother’s tummy. I think you and your family are doing a great job of respecting this time in your mother’s life. I honor and respect your family’s compassion.

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