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When you can’t be there to say goodbye

Long distance or mandatory distancing (COVID-19) means families, friends and loved ones cannot always be there for a final goodbye. Today’s realities provide a good reminder that we should take the opportunityin our daily lives to tell our loved ones what they mean to us.

Due to COVID-19 many people are unable to say goodbye in person. The focus in the media is on those afflicted with COVID-19. However, all patients facing end of life care are affected by the limited access.

How do we connect to our loved ones to say goodbye when hospitals are restricted to medical personnel, palliative wards are closed or limited to immediate family members, and seniors homes and other residences are shut to any outside visitors?

Social Distancing Does not equal Distant

As a friend or family member of someone with terminal cancer, you may be struggling with stress, guilt and other emotions from knowing you cannot be present as death nears. It is important to remember that your connections go beyond physical proximity.  Physical distance does not diminish the love, the importance of friendships, or the closeness between people.

Using the tools available to connect 

Not everyone has the same access to technology or devices that will allow for connection. News stories are providing alternative suggestions on how to find ways to communicate. Older iPads, phones and walkie talkies are being used to contact one another. It is encouraging to hear stories of nurses holding phones for their patients to connect with loved ones.

Videos or voice recordings can reach your loved ones when you can’t be there

It is still important to find a way to say goodbye. You can use technology to communicate your compassion and bring you closer to your loved ones. Creating videos or voice recordings can provide comfort and say goodbye in a special way that will let the person know just how much you love and care about them.

I want to make a video but what do I say?

Generally, there are four messages we want to convey at the end of life1: Love, Forgiveness, Appreciation, and Celebration of one another.

You may know what you are feeling but not know how to verbalize those emotions. Find your inspiration from the following suggestions:

  • Make sure they know they are loved
    • Someone who is dying may appreciate knowing that family and friends are thinking of them
    • Pass on thoughts and prayers from others
    • Thank them
    • Remind them of the qualities that make them special to you
    • Wear something you know they like or made for you
  • Share special memories and common stories
    • Relive memorable moments in your lives. For partners or friends, recall how you met, how you fell in love, etc.
    • Reminisce about your childhood
    • Share stories about other people in their lives
    • Show them pictures, keepsakes or other important items
    • Play their favourite music
  • Share the positive effects they’ve had on you and others
    • Discuss how lucky you feel to have this person in your life and how they have changed your life
    • Remind them how much your relationship means to you and will continue to mean to you once they aregone
    • Talk to the person about their role in the family
    • Discuss traditions that are important to them and ensure them how you will continue to carry them on going forward
    • Remind them of the best advice they given you and how it helped you
  • If you choose to do something in their honour, tell them
    • For example: leave a Legacy, give a donation, practice traditions, pay it forward, plant a tree, etc.
  • Relationships are not always easy and you can use this opportunity to ‘make things right’ or find peace
    • Whether put simply or with explanation, find your way to say ‘Forgive me’ or ‘I forgive you’
    • Acknowledge efforts that you or they have made or will make to improve the situation
    • The truth is good but there is nothing wrong with a little white lie. There’s no need to burden your loved one with a painful truth.
  • If you feel that your loved one is hanging on, you may consider providing reassurance that it is alright for them to let go. Sometimes at end of lifea person needs to know that permission is granted; that they do not need to fight to stay alive any longer.
  • If your loved one is religious, offer to pray with them and pray for a gentle transition to the afterlife

Medium

  • Today’s technology provides many options for communication
    • Real-time:
      • You can use free online tools such as Skype, FaceTime, and Zoom to have real-time video and/or audio conversations with your loved one
    • Create saved messages:
      • Personal devices can be used to record voice messages or simple videos. Your phone, tablet or computer should have an application for self-recording.
        • Recording on your computer: use Photo Booth for Mac OS X or Camera for Windows 8 and up. For other operating systems, you can usually find information in the device manual or online.
        • Recording on your mobile device: you can use your phone’s camera.
      • Online software and services are available to create, edit and publish longer or more complex videos. An internet search will provide many options.
    • Storing and sharing saved messages:
      • There are many options available for file sharing, depending on the size of your recorded message.
        • Small files can be shared through text messaging or email.
        • For larger files, YouTube, Dropbox and Google Drive are popular, easy-to-use file sharing tools but there are many other options that are free and can accommodate videos of sizeable length and content. An internet search will provide you with other options.
  • Consider how your loved one will receive your video, whether real-time or as a saved file
    • Most options will need an internet connection
    • Do they have a personal device or access to a computer, tablet or phone? Be sure these devices are charged/have chargers.
    • You may need the cooperation of a caregiver or medical staff – someone to set up and play the video for your loved one
  • Please note: for any online tools or software you choose to sign up for please be aware of their privacy and access policies.

Tips

  • Be yourself but prepare in advance:
    • Prepare notes and practice, but if possible do not read a script. You want to be as authentic and heartfelt as you can. Your notes will help to keep your thoughts organized.
  • Focus on the camera while recording but do not worry if you find your eyes wandering or checking your notes. Try to remember your audience and how you would want to behave as if you were there in person.
  • Speak clearly but authentically. Enunciate and try not to be overly active or demonstrative to minimize any distortion of the audio recording.
  • It doesn’t have to be perfect but feel comfortable to stop and start over. If you make small mistakes or stumble, it’s okay. Consider this a conversation and allow yourself the little imperfections. Review your recording to be comfortable with the final result.
  • Do not be afraid to laugh or shy away from humour. If appropriate, if it is part of your relationship, it would be normal to include it.

Written by Heather Buchanan

April 6, 2020

*Special thanks to those that provided insight on the subject: Edith Mulhall RN RMT CLT-LANA &  Mike Goldberg  Community Outreach & Education Coordinator Palliative Mantitoba

REFERENCES

https://irabyock.org/books/the-four-things-that-matter-most/,

http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Communication/Tips+for+Talking+with+Someone+Who+is+Dying.aspx

https://www.crossroadshospice.com/hospice-palliative-care-blog/2017/may/31/what-is-a-legacy-video/

http://www.virtualhospice.ca

https://www.caring.com