Information Sharing

Need Adivce

Hi all:

I am surveying all parents I know to help me with this. I have a friend who is terminal with MSA and she has two teen daughters, 15 and 18. I want to suggest some ways she can leave a bit of herself with her girls and her future grandchildren. What are some ideas that she could do now, while she is still somewhat mobile and can still talk?

I was thinking of making videos of messages. She can’t write. Also, what her girls could do for their mom to help with their grief?

Any ideas?

Thanks so much.

Warm regards, Judy

4 Comments to “Need Adivce”
  1. First, reassure her she is already leaving a legacy in the courage she shows as she deals with her illness. Secondly, recordings in which she says everything she has always wanted to say to her children, her grandchildren, and her spouse are yet another way to leave a legacy. The legacy of love is powerful.

    Ruth Nemzoff, Ed.D.

  2. HI Judy,

    One thing that helped me when I was diagnosed with cancer was that I asked my children who were teenagers at the time to tell me what they would tell their children about me if I was no longer here. I told them to think about it and if they were able to either tell me or to write it down and give it to me. Only one of them did and it is still so special to have. I also talked with my children about their father and let them know that I expected them to support him if he choose to remarry, that it would be OK with me and not disloyal of them to support him if he choose to remarry.

    Another thing I was advised to do was to leave a legacy. What I choose to do was to make each of the kids a cookbook of the favorite family recipes and the history of each recipe – e.g. came from my grandmother, etc. The kids are still using that book every day!

    All the best to you and your friend.


  3. Dear Judy,
    I love the ideas others are sending you – and the many conversations the list engages.
    At first I considered just sending this to you as a private email, but have changed my mind. Therefore a disclaimer to other list members, I hope this is not ‘clutter’ to your in-boxes.

    My mother recently died after almost 6 years in skilled nursing and some time with Hospice. She was 94 so the issues and approach may appear to differ from your request, but there are some threads that I think might be helpful to your friend.

    There are a LOT of online resources that I found helpful as well as books and other types of material to prepare me to deal with her death as well as to help gather information to share with the rest of her family. I traveled from WA to CA to support her and found the activities were very beneficial to both of us AND also to other family members through sharing them.

    In thinking about ‘legacy’ memories you are gathering quite a few from others in the list. Photo journaling was fun and introduced meaningful conversations.
    One of my longest running endeavors was to record her comments about things she might want her family to know. I did this in an interview form with pocket recorder which I later transferred onto CD’s. I would have loved to have done a video, but where I was I could not do that type of activity. This went on for over a year as her interest and stamina to talk were issues.
    What I did find helpful was to select interview topics/questions from varied formats. For example, NPR has the ‘listening project’ that has generated several conversational questions. There are also questions to develop a ‘life story’ – one of which came from our NPEN discussion list from an extension group.

    A close friend died when her daughters were similar to ages of your friends daughters. She identified times she was sad that she was going to ‘miss’ in her daughters’ lives. I am reminded of a poem she wrote for her daughters – Topically it dealt with her sadness of missing their proms, graduations, etc. And of course the underlying message that she would be ‘present’ in their lives within their memories of her.
    A thought – for the daughters. Could they be involved in identifying ways/times they will miss their mother’s presence? If so, it might be possible for them to pause and identify what she could do at this time that might help them through those times…or for that matter the mother could review the list and might have some ideas.

    Watching and helping others in this last transition, I am aware of what a gift your friend has – time to generate a legacy memory. I don’t know how she feels about the ‘gift of such time’ but if she does she has much she can share at this time that would/could be of strength and support to her daughters.

    Do you know of the resource “Graceful Passages”? (CD with booklet that beautifully provides strength and support to those supporting the dying person as well as the person in the process of dying.) It is available from Amazon. I’ve shared it with many friends – all found it helpful. It could be helpful to the daughters as well as the mother.

    Another tool I found helpful in working with the rest of the family was “The Go Wish Game” – a deck of cards to help those supporting the person dying to know the priorities they valued. is the website and explains the process more clearly. I believe the daughters might benefit knowing their mother’s priorities.

    I’m sure you are connecting with grief support groups/counselors that support children in the loss of their parent. One I am aware of is in Texas started by Marianna Cacciatore is her website and it links to the program for children.

    Your question of what the daughters’ might do to help with their grief – Would they want to create or identify some type of remembrance of themselves that would be with their mother’s body after her death? I am reminded of poems, pictures, a flower, etc…..that are placed in a coffin, urn, or grave.

    Your friend is fortunate to have someone like you in her support circle. For your friend and daughters, I will hold them close to my heart.

    Sending you love and support,
    Janyne Slabaugh
    (Retired Family Life Educator – WA State and NPEN board member)

    PS please contact me individually if you would like added information on any of these thoughts.

    I heard about a mother of teens who was diagnosed with terminal cancer. She decided to purchase cards for future special occasions in each of her children’s lives (birthdays, graduation, engagement, marriage, etc.). She then wrote personal messages on each of the cards and filed them to be given to her children on the appropriate occasions.

    Denise J. Brandon, PhD

  4. I recently read about an iPhone/iPad app created by a social worker and with the help of a woman who had lost a parent. It is a guided interview (either voice or video) recording questions a child might want their parent to answer before their death. I can’t recall the name. If someone else knows, perhaps they can share it.

    Mika McAfee, MAEd