Advocacy for my Mom Until Death

Advocacy for my Mom Until Death
My Mom and I

My Mom and I

My mother’s blood sugar spiked to 400 on Monday and 520 on Tuesday. She was fighting a UTI and ecoli. At 92, her body tried to fight it off. The doctor said the antibiotics would either work in two days or she would go down hill fast. It was the later.

The care ambassadors and nurses at Freedom Village were amazing. I lost count after twenty-three staff came in to say good-bye and provide loving care. One care ambassador said, “I’ve known your mom for two years and she was my family.” Another said, “Everyday she would greet me in the hall and compliment what I was wearing that day.” My favorite was someone reminding me of her love of cats and how she usually had one with her or would respond to the mechanical one that meowed, purred and moved. Her face would light up with joy.

My mom lived in a higher level of care for nine years. Seven years in assisted living and almost two years in skilled nursing in Lake Forest, CA. Six years ago, a doctor made a comment that her life was not worth living because she had dementia and couldn’t remember anything. I replied, “How many of your patients said thank you and complimented you today?” The doctor sheepishly said, “Only your mom.” I said, “Then she still is fulfilling her purpose isn’t she?” The doctor backed off and gave the best care until my mom left that Seattle hospital.

Through nine years of advocacy for my mom, I have done the best I was able, making decisions with the knowledge that I have. I am not a nurse and based my advocacy on her wishes and trying to keep her comfortable.

Extraordinary Versus Comfort Care

Hospice began on Tuesday and they were a Godsend. My husband was in Seattle saying goodbye to his dad on hospice when everything happened. A nurse, a social worker and a chaplain came from hospice to support my mom and me. I learned the differences between extraordinary care and comfort care at the end. The IV’s, antibiotics and unnecessary medicine disappeared. The morphine and adavan began.

Final Burst of Energy

After the chaplain said some beautiful words, my mom had what they call a “burst of energy.” I was holding her hand when she opened her eyes half way and said, “I love you,” seven times and “thank you” twice. Then she closed her eyes and the energy was gone. I will treasure that memory.

After she choked while attempting to eat, I said no more food. A caregiver patiently helped her drink some juice even though it took 15 minutes. That was the last time I saw her drink because she could not swallow again.

The turns every two hours caused her to cry out. The repositioning was to prevent bedsores. I called hospice when the gentle turns seemed to hurt her more and they said to reduce the turns to every three hours and give the morphine 20 minutes before. The nurses and care ambassadors were outstanding.   This little tip made the gentle turns easier for her.

The last day, she started to moan with every exhale. I called hospice again.   The gurgling in the throat had started and it was time to start the medication that helped with that. The director of nursing arrived before hospice and we started the PRN of morphine and adavan that had been preapproved by her wonderful doctor. Hospice increased the frequency of the medications to once an hour and said she was not to be turned again. Alleluia.

The director of nursing was there every hour to administer the comfort medications. I cannot say enough about the staff of Freedom Village Health Care Center and how they supported and loved my mom and I, to the end.

My husband came back from Seattle and the room filled with music. When the chaplain arrived they sang together and it felt like a send off party. Her doctor entered about this time, gave me a hug and said, “She is going out in style. I am so happy that she is comfortable.” A priest came to give her last rites. I said and prayed everything I wanted to with my mom and have zero regrets.

After nine hours, my husband and I decided to take a dinner break. The director of nursing said she would not leave my mother until we returned. Another change happened right before we got back.

The chaplain and hospice were called. The moan on each exhale came back and I requested more morphine for her. Her doctor gave permission. Chris and I sang a couple of songs to her. The chaplain arrived. I requested scripture and the chaplain was reading from the Gospel of John when she passed. God’s presence was in the room. She was comfortable and at peace.

Today is Sunday and I would normally go and visit with my mom. I wrote this blog to help me with my own grief today.

It seems ironic now, that my new book is dedicated to my mom. Writing this blog has been therapy for me over the last three years. After sharing numerous stories about my mom, several senior living people said you should write a book to help other seniors and their families. So I did and “Your Senior Housing Options” was published recently.

I love you mother and hope your stories in the book can help others learn their options and plan ahead. So many seniors wait until a crisis and lose their ability to choose like my in-laws did. The greatest gift my mom ever gave me was to plan ahead and move into a Continuing Care Retirement Community. Over 16 years, my mom had good transitions through three levels of care.


  1. So sorry about your mom.

  2. My condolences to you and your family. And God bless you! You are one of the few who understand, (and now, first hand) that people with Dementia can not only have a wonderful life, albeit ‘different’ that what it may have been, but they can also have a beautiful death experience, as can the family who loves them so much. You have been an amazing daughter and I know that your Mom is so, so proud and smiling down on you. Keep sharing your knowledge. It is much needed across the continuum of care providers, patients, and family members.

  3. I am so very sorry. I thank you for sharing your journey!

  4. Sending warm and comforting wishes your way, Diane. So sorry to hear of the loss of your mom.

  5. Diane,

    Extending my condolences on the loss of your beloved mom. Have followed your blogs on your mom’s journey and hope that you feel good knowing that she had a long and fulfilling life; and you did your very best in the support, care and love. I lost my mother almost five years ago unexpectedly (without saying good bye or I love you) which changed my life completely. We had a close relationship and were joined at the hip. A day doesn’t go by without thinking about her and having that emptiness in your heart. With time, the pain lessens and the good memories prevail.

  6. Diane,

    May grace, peace, and good memories be yours. Rest assured your Mom’s love will live on in you.

  7. Praying for you, Diane. May God’s presence bring you comfort.

  8. blessing to your mom, your family, your husband and you. Your mom had great fortune, not only for the life she lived, but also the daughter she had. My parents went suddenly, but I think it would have been hard to visit my mom weekly if she had dementia. I don’t think i could have. But, that’s what you did. In the process, you made your life and your mom’s life better. That makes you an awesome daughter who likely listened and learned from your mother. That just goes to show your mom as an awesome person, too.

    Thanks for being such an awesome person, friend, mom, wife, and most importantly today, a daughter.

    I offer up a prayer of strength to you at least as large of an amount as your mother provided, in this time of great need.

  9. I didn’t know your mom personally, Diane, yet I have learned through the experiences you’ve shared via your blog (and your first book) how to be a better AL Administrator. Thank you to both you, and your mother, for your unselfish generosity. Please receive my condolences for your loss.

  10. I am so sorry for your loss. Thank you for sharing your story. It reminds me of my family’s experience with hospice when my grandmother passed after living with Alzheimer’s for a decade. Because of that experience I served my local Alzheimer’s Association went back to school to study health care administration, read your book, and landed a job working in senior living. I wanted my grandmother’s passing to have meaning and wanted to help other families. Thank you for serving as an inspiration even in your grief! Sending prayers for healing and strength.

  11. Thank you for sharing your journey. Very real and inspirational for those with aging parents. You both emulate grace and dignity effortlessly. Thanks for your posts

  12. Your mother was truly blessed to have you. Having no regrets is amazing and unique, good for you.
    Warmest regards,
    Jana Bartley

  13. you wrote about a burst of energy before your mom passed..
    well i witnessed that too with my dad upon his passing.. after being asleep for hours and hours right before he went into his final slumber.. he abruptly sat up in bed and gave three deep breaths with his eyes wide open and then he died.. !
    It was weird to witness as I had never seen anyone die before my Dad..

  14. Dear Diane, reading your experience I feel my own grief coming back fot the loss of my mum 7 years ago at the age of 83 and the loss of my Dad last year in March. He was 92 when he died and the loss is still there every day for both of them. I know we may not complain but nevertheless the grief and pain settles but I’m very sure it stays with you for as long as you live. You’ve been very lucky to say goodbuy to her. Cherish these moments.

  15. Thank you for your kind words, support and prayers. It has meant the world to me.

  16. Diane, you and I have never met in person, but we share the journey you have just completed . . . and I understand where you are right now. Though I offer you my heartfelt condolences, I find I’m also proud of you and glad you found peace through how you’ve lived and loved as your mom’s caregiver-advocate. That’s the very best we can do.

    My thoughts and prayers go with you.

  17. Diane,
    I love your advocacy for your mom throughout her journey. She lived with dignity; down to the last days and you championed the importance of her life through her last breath. Thank you for your transparency and inspiration. You, Chris and family are in my prayers.