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Friday, February 15, 2013

Hallmark is listening


Today has been an amazing day. The petition for Hallmark to create hospice cards has now grown past 1,500 signatures.

Hallmark has responded in two ways.  The Hallmark search engine now recognizes the word  “hospice” and the phrase “end of life.”  It will now send you to a card match that is as close as they could find to address the need.

They have also released a statement entitled:  “Viewpoints: Greeting Cards for People in Hospice Care.“ Screen shot below:





I wish to applaud these two steps in the right direction, but I want you to look closely at the first card they selected to address this issue;

“Cancer is tough, but you are tougher.”


This is the last thing a hospice patient with cancer wants to hear.  To often they have been told that this is a fight, cancer is a battle.  What is hospice? Losing? 


There are other lovely cards depicted in the statement, the “caring thoughts” are nice but I don’t think the last image of  “I hope you are taking care of yourself” is the best choice.   That makes it sound as though the patient could do something to rectify his/her situation if they just took better care.

We need Hallmark to take this issue of communication at end of life and hospice head on as they have for numerous topics like miscarriage as seen in this below screenshot.  This kind of clear messaging gives us permission to talk about life and death.

Hallmark also says they are rolling out a “tough times” selection of cards, but we need a clearer choice that that.  We need to see a “hospice” header right beside the “get well” and “thinking of you.”

We need HOSPICE cards.

Please sign the petition: Hallmark: Create Hospice Cards 

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Update:  One comment suggested we should offer some wording for Hallmark.  I welcome your suggestions in the comments here or on the petition itself.

What would I suggest?  First more than text some folks look at the picture.  I would love to see more faces and people on cards.  Pictures often say things we cannot says with words alone.

All of My Children

But what words for this?  No one said that would be easy...

There has never been a moment I loved you more,
than this moment,
in this time,
I wish we could finish this race together.
I wish I could take the baton from you,
I wish I could finish the relay in your place,

You have always been the light within my life,
and now that night is coming

Know that I will always love you.

2-24-13
Here are some ideas from @BeHereThen http://beherethen.wordpress.com/2013/02/24/end-of-life-issues-and-hospice-cards/ she gives them to folks who want to ideas of what they can say.  


  

32 comments:

  1. Congratulations Regina for having starting the hospice cards petition! Hallmark in Greece puts on the shelves only marriage, birth and birthday cards, sometimes a few for mourning. Was surprised that there are miscarriage cards..On the other hand, in Greece you don't send a card: you visit to express your sympathy, friendliness, happiness or at least you call... but I would appreciate to be able to find cards on which to write a personal message to friends/relatives in other cities/countries.

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    1. Thank you. We try to visit in the US too, but often that is just not possible due to distance or economic reasons. It is nice to be able to send a card.

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    2. epatientgr -- I LOVE that you would write a personal message! So many people don't, and while I'd love to get a card of any sort than get nothing at all, a handwritten one is super! Are there not blank cards in Greece with images you might like, and you can write your own words inside? If not and you want some easy ideas, I'm putting them out there for people over on my still-needing-SEO blog BeHereThen.wordpress.com. Read the first post of yesterday, on "hospice cards" and read the possible card that starts: "I will plant poppies." You might like it! Best wishes. -- Si

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  2. Excellent work Regina... tho it sounds like Hallmark would do well with a bit of "Let The Patient Help"

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  3. Regina, this is stupendous. You're a force of nature.

    And you're absolutely right - the card selection, while well intentioned, was apparently not chosen by people in the hospice movement, because they don't yet reflect familiarity with what it's like to be there.

    As you say, "You're tougher" is inappropriate. More importantly, though, as someone who was seriously considering impending death, I know the sentiments need to include being at peace, "I am with you," enjoying the beauty of each passing day, and the time we have left with loved ones.

    And I imaging many people would want to express something like "As you prepare to meet the Lord." If that were my religious view, that's what would be on my mind once I'd made my decision, and people who knew me would want to express it.

    I know these things can be very uncomfortable for people who haven't been there. That's why it's important to listen to those who are.

    I applaud Hallmark for *listening so well* and responding quickly. That's truly wonderful - they responded genuinely, without a hint of being defensive. The next step will be to listen more, to people in the hospice movement - patients, family members and experienced professionals - to hear what they want to express in cards.

    Because without that, those people won't be able "to send the very best," as the old Hallmark slogan put it.

    Have you heard anything from American Greetings and other card companies??

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  4. Thank you Dave for speaking about the view from inside the hospice space. I think Hallmark was well intentioned in their choices, but the fact that they chose these, out of all the cards they sell, shows how little is available for the patient in hospice.

    They do have quite a few cards that represent the Christian faith but, I did not see much along the line of greeting the Lord in heaven's home. Also, I did not really see any other faiths represented.

    I agree they should listen more. Hallmark should try to send delegates to End of Life and palliative care events and have people meet with the design team.

    I did not attempt to speak with other card companies as of yet. I know the market saturation of Hallmark and know how challenging it is for a store to place two card lines. I am hoping Hallmark will continue to listen.

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  5. HI Regina, Well said! The suggested cards from Hallmark did not address the real issue -- although it is wonderful that they are responding (and perhaps will eventually 'get it'). And I quite agree that making cards available from only one faith (or that the Christian 'caring cards' they have) don't address the hospice situation. And having Hallmark come to 'end of life' or palliative care events, and having their design team meet with them, is an excellent idea.
    I would also prefer to visit (as mentioned above), but what if you live too far away, or are disabled yourself, or were a close friend in the past but haven't been able to continue the relationship? All of these people need a way of letting the Death Journeyer know that they are thinking of them and holding them in their blessings/prayers -- and a card comes with no expectation that there will be a response (unlike a phone call, or even an email).
    To call or visit someone out of the blue puts the Death Journeyer on the spot -- their visitor is unlikely to know much of the details (medically and emotionally; and then how do either start the conversation in a useful/supportive way?
    On the other hand, a 'hospice card' could open a doorway for the Death Journeyer. Perhaps this family member or friend has faced a similar death, and the DJ feels that they would intuitively understand their situation better than most other people. Perhaps the family member or friend was an especially close friend in the past -- and while your lives have taken you 'out of touch', they might be exactly the right person to support the DJ in this part of their journey. Without such a card, the DJ might not even think to reach out to them, and lose a significant support person.
    Keep up the great work, Regina. I will encourage people to sign the petition.

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    1. Thank you Pashta MaryMoon. You make a great point that unlike a call,email or a visit, a card does not require a response. It is a gift given freely and so nice to receive. Toward the end patients often have little energy to respond but the still like feel wanted and loved. A card from a distant friend read aloud by a family caregiver at the bedside can be so beautiful...

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  6. Regina, I signed your petition, but I find this follow-up letter to be less than productive and frankly, a little irritating.

    “Cancer is tough, but you are tougher- this is the last thing a hospice patient with cancer wants to hear"... alright, so then what is the FIRST thing they want to hear? I presume "cancer won- enjoy your death" isn't it, right? What would you have said, and why do I even need to ask? Because normally, when someone steps in and proclaims "you're doing it all wrong", the next words out of their mouth is "HERE'S how you do it". I'm still waiting for that part from you.

    “I hope you are taking care of yourself” is also insulting, according to you. Is anyone else scratching their head right now? You seem to be a master at finding offense where none was intended. What is your solution?

    As the creator of this petition, I would think that you'd be begging to be the one to meet with Hallmark's delegates, rather than suggesting they talk to strangers at some "End of Life" event to get it right. After all, you started this, right? Tell me that your commitment goes beyond your keyboard.

    David Ferrara

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    1. Thank you David for your comment. I would have no problem meeting with Hallmark but would like to see them meet more folks than myself in the end of Life Movement.

      I do think you have a brilliant idea about suggesting content and I will do so, but I love some of the suggestions I have seen on twitter and as comments on change.org

      Also if you are interested in joining the larger conversation on this topic a lot of us chat on Twitter on Thursday nights at 7:00pm in a chat called #DWDchat (Death with Dignity Chat) we spoke quite a bit about this topic last Thursday.

      As far as the comment about “Cancer is tough, but you are tougher- this is the last thing a hospice patient with cancer wants to hear" I think we need to remove the battle concept associated with at least cancer. No winners, no losers. Just people who are sick or people getting better. I would probably start with love, friendship and memory.

      As a caregiver for an end stage cancer patient, I know there is very little that end stage patients can do to care for themselves at the end. We clean them, we feed them and we bring them medicine. Why remind them of what they can no longer do? Instead we need to speak from love.

      If you are familiar with my advocacy you will realize your comment about the keyboard is incorrect. I am constantly traveling in my advocacy and our patient centered care movement is growing. We would love for you to join us.

      That is sorta the point about this petition, it is not about me, it is about us.

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    2. Thanks Regina, I had no idea you were such an avid supporter of this cause, and I applaud your caring nature and your actions.

      Thank you for clearing up my misconceptions, and although I don't do the Twitter thing, you now have my full support! If you have anything set up on Facebook, I'll gladly "like" it, leave some supportive thoughts, and share it with my friends.

      Perhaps I was insisting on some "answers" out of frustration, because I honestly had no idea what to say while visiting my stepmother- who died in a hospice last year. The usual well-wishes- like "hang in there" or "stay strong" seemed absurd in that situation, and I could have used some suggestions! She was not religious (nor am I), so that wasn't an option either. I know my presence was more important to her than words, but still...

      Again, I sincerely thank you for the work you do.

      David

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    3. Thank You David.

      Though we do not have a End of Life specific chat on Facebook, we do have a general group in which we cover topics that include end of life. It is called Partnership with Patients and everyone is welcome: https://www.facebook.com/groups/295223483902051/?bookmark_t=group I have been updating that page with this petition and many people post about other topics that are important to patients.

      You are correct. Sentiments such as "Hang in there" and "stay strong" really do not address the feeling of either the patient or family/friend as death nears. We need a the words in situations like this. We need those words to be available in the drugstore, card shop and gift store. When need to glance down at them while in line buying milk. Just seeing them there will normalize death and give us the permission to talk about this.

      As we begin to talk about this naturally, the words will come. The phrases we read will come to mind and help us and guide us in this most important of conversations.

      Thank you for being part of this movement.

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    4. Again, let me put this out there:

      If you don't know what to say to that person in hospice that you care about, step back for a minute and ask,

      "What would I want to hear if it were me?"

      Would you just want to be left alone? Would you want people to visit for 5 minutes, hold your hand, give you a kiss, and leave? Would you want quirky and irreverent, funny cards from friends who send you snapshots pasted onto the front of a blank card of things you've done together, with even just "I love you!" written inside? Or would you rather have each person maybe tell you / write in a card just ONE thing they love about you, or how you have made their life a little better?

      When I volunteered at a hospice in Maryland, a wonderful one called HospiceCaring.org, I talked to others about ethical wills, and helping dying patients find what they want to say to the living. Hospice cards are the other side of the coin.

      Regina, I appreciate the retweeting and mentioning here of BeHereThen.wordpress.com -- Another approach may be let's turn the question around and see what people would like to hear, themselves -- then apply that, as appropriate, to their loved ones in hospice care.

      I'd rather see a friend scrawl in their barely-legible, misspelled words "I love the hell out of you and you'd better send me postcards!" than get nothing.
      That kind of silence is so loud, it hurts. It hurts profoundly.

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  7. Thank you, Regina ! God super-duper Bless !

    Joe Louis Gonzalez

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  8. Someone you Love is Dying, What can be said?

    Clearly dealing with a dying person is out of boundaries for any training we receive as human beings. We are clear on how to celebrate all sorts of life events. But death? Who knows? Not even companies like Hallmark have invested much thought over a topic that is as momentous as any occasion can be.

    Why is that? Why would a leader in human sentiment ignore such an important point in someone’s life. From a value point of view, I doubt that any occasion ranks higher in the need to express a sentiment that tells the story for how much a person’s life has meant to another, or indeed measures the depth of love we feel for another.

    And yet, as if it was a subject that has been shunned for reasons that are not apparent, no one, including the company that has driven a stake in the ground as the company known for expressing feeling that are complex and difficult to articulate is silent, and has all but ignored the topic. I must say, I don’t understand.

    Of course there is sadness for everybody. We love lots of people, and knowing that someone we love is soon going to be gone accelerates our passion and care for that individual. You could miss the opportunity to really let that person know how much they mean to you, and you don’t want that to happen.

    I think most people become acutely aware of how precious the rest of their life is, and how precious all the people that are in their life, are to them. They more or less are filled with love and want to express that love. They want people to know what they mean to them and how important they have been to their life. They want to thank others for their kindness and contributions. They want other to feel how much they appreciate all of these things.

    So the question is, what does that near death person want and Hallmark where should you focus your efforts? As an individual, probably what you are already giving them – love. From a Hallmark point of view, the messaging that supports that at the end of someone’s life. But look, nothing is more easy, nor probably more valuable, than just being there and letting them know you care. Let them know that they have also made a difference to your life. Tell them why. In the end, I think that most people realize that what matters has everything to do with two things, love for God and humanity. Those are the two things that count; you take with you and have left behind.

    So Hallmark, what messages will matter to a person that is dying? Things that have to do with love. Sending a card that expresses how that person has made a difference in your life does. A message that reassures a person of God’s love and the kingdom that waits will also matter. Expressing the joy of a heavenly re-united family matters.

    A dying person may be concerned for the support they can no longer provide to a family or person. Letting them know you are OK, and will manage to stay OK will help to relive them of potential guilt.
    Letting them know it is OK to return to God, helps to reduce potential fear they may have of passing.

    I would suggest that our culture is not very trained in knowing what the right things are to do and say, which leaves us feeling awkward, which leaves many people and even Hallmark silent or absent.

    Perhaps more than at any other point in the human experience, dying is the time that a person most needs the love their circle of family, friends, and colleagues can offer.
    It’s the grand finale of everything that person has done. It is the time to celebrate shared experiences and the bonds of friendship and love that will never expire. It is the most significant time in a persons life to let them know they have mattered in your life and why.

    It is a time for generosity of human compassion to be shared and the value that life has offered to be savored. It is a time to say farewell to those that are returning to God’s kingdom, and to let them know that you are right with it.

    More than anything it is about love. Share your love - it’s what matters.

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    1. That was absolutely beautiful Randy.

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    2. Beautifully said.

      I think we forget that we USED to be more familiar with death, and with dying, when we lived in multigenerational homes and communities, when our elders and infirm were not shunted into "care facilities" like hospitals and nursing homes, where they are apart from the come and go of life.

      And we get caught in the horrible sadness and loss and pain of it, there's no denying that. But I have friends who can make me cry with laughter, and I would never want them to get all entirely somber on me and forget to send me also their wisecracks and humor and silliness and playfulness. I may not have a whole lot of energy for it, but that's another great reason to record it on a CD or videotape it and send a DVD that the person can watch when they feel up to it.

      Hospice talk, and cards benefit from a lot of what the ethical will community also talks about: offering forgiveness, asking for forgiveness. Not necessarily bringing up and making a huge issue of whatever the harm done was -- but simply saying "all is forgiven, whatever it was, it all is forgiven" can be healing -- as can be simply saying "if I have ever hurt you or let you down, please forgive me." (And yes, there is LOTS of free information on my blog about how to think about these things, and how to say and write them.)

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  9. I’m glad Hallmark is now corresponding with you Regina.

    I'll be Frank (You can call me Sally) the first several Tweets from @hallmarkpr were "less than splendid." One of the first guidelines in Social Media and actually in "real life" is to LISTEN. The first several @hallmarkpr Twitter Account tweets felt to me as if they were just "Blowing you off." Next when it was obvious you were serious @hallmarkpr shot off some tweets that were simply not true. "You've got to Think before you Ink." LF

    Now here's the deal: Every single day 10,000 people in the world are turning 65 years old. People are also living longer with terminal illness too. So from a simple supply and demand viewpoint @hallmarkpr would be really smart to thank you Regina Holliday for bringing this need to their attention. They could switch their production lines from the Happy Birthday cards to the Hospice cards.

    This is a perfect opportunity for Hallmark to show they genuinely care and if they do they will listen to and respond seriously to your council Regina Holliday.

    The entire time I’ve written this post I keep thinking of our friend Amy Berman. I’ll bet Amy would have a number of remarkable inserts for the Hospice cards.

    When the student is ready the teacher will come.



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    1. Thanks Lisa! As you pretty much saw this live from the first tweet, I really value your comment. I am glad they are starting to respond :) It will be even better if we begin to have a conversation.

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  10. Regina,

    Thank you for your work on this and other patient advocacy issues. I look forward to checking out your Twitter and Facebook feeds / page, as referenced above.

    I agree with your thought that "cancer is tough, but you're tougher" sends the wrong message. In my own words (which might help explain it to Hallmark and others) -

    A) Much of our conversation about illness - not just cancer - uses militaristic language. We fight the battles. Which, yes, does mean that if their illness progresses, a patient gets the message that they haven't fought hard enough and have lost the battle. This is sad, but particularly disturbing when the illness is known to be progressive. [Having cystic fibrosis, I know this first hand.] It can sometimes be more helpful to send postive healing energy to our broken bodies. Certainly during the time of hospice, encouraging someone to 'love themselves as they are' or 'your body is breaking down, but your spirit will live on [in Heaven; in all of us]' might be more helpful.

    B ) As you mentioned, by the point that a patient is in hospice, they are not feeling "tough." They are not wanting or able to fight any more. The act of getting ill enough to be in hospice is exhausting. [Having been somewhat near that point myself, I will share that the act of breathing can be exhausting at that point.] Cards are wonderful, because they work against the pressing feel of isolation. Perhaps visitors are unable to come (due to distance or schedule or discomfort with the hospital / hospice environment) - perhaps even the patient is unable to have visitors - but they can send their love.

    What would I suggest for messages? "You are in my heart and on my mind. I hope you feel ease with your upcoming transition. You have blessed those around you in many ways, and we will never forget you. Thank you for being part of my life." And, really, why should there not be funny hospice cards? How about "Would you do me a favor? When you get up there, would you tell Uncle Joe he still owes me $20?" Or something like that. When people are old and sick, they don't necessarily lose their sense of humor. :D

    With respect and love,
    Carrie

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    1. Thanks Carrie!

      I look forward to seeing you on facebook and twitter!

      Very good explanation on the militaristic language in healthcare. Before I entered the world of cancer I had no idea how pervasive this was. I can be so draining to feel that we at "war."

      thank you for explaining, better than I can, the challenge of seeing visitors when just breathing is a problem. A card can very much fill in this lonely time.

      Those are great suggestions for the card messages, I especially like the funny one :)

      -Regina

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  11. I'd think something along the lines of "So many have been blessed because of you," or "Your life has been a blessing to so many," type of thing. I'd think what people want to hear is that their life meant something to someone. That the world is better because they lived. Not so much focus on "oh crap you're dying and I don't know what to say about that." Things we'd say in a eulogy that should be said before they died.

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    1. Dear Gaynell,

      You are completely right. We need cards that are uplifting as well as cards that are humorous as well as cards that are deeply personal. There isn't just one choice or one type in the Birthday card section. There should be many choices in the hospice section. It is so important to hear those loving words before we die.

      -Regina

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  12. I imagine American Greetings and others may be paying sharp attention.

    Hm, I wonder what card companies are featured in hospital shops. I'll try to find out, at mine.

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    1. American Greetings says they are going to make a card for a patient with a serious illness.

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  13. I ask myself, "Now why didn't I think of this?" I have been a hospice nurse and plan to go back into that field as soon as possible. Many people fear dying and don't want to hear the 'D' word. As hospice nurses we work to help people through this time, not only the patient but the family as well. I know it sounds strange to some but hospice and end-of-life care can be a very beautiful, amazing experience. When people ask why I like being a hospice nurse? I tell them, "It's because I don't think of this as the end, but only the beginning." "I’m opening the door to a new and better world for them." "They get to be with Jesus, what else could be better?" I also tell them, “Hospice does not mean giving up.” “I t means choosing to be comfortable and enjoying what quality of life remains.” I frequently refer to John 14:2-4.
    You have hit upon a topic near and dear to my heart. So many people are so resistant to hospice; some don’t even want the word to be spoken. But once they are on it or have a family member on it, their attitude begins to change. After it’s all over, I’ve heard many say, “I wish I would’ve done this sooner.” I say, “I do too.” The sooner we can start hospice care, the more we can help the families. And a little known fact is NOT EVERYONE on hospice dies. We do have patients that occasionally do what we call “Graduate”. I know a couple patients who now that have been off hospice for 1 ½ years and other for 6 months or so. So it is not always ‘The End”.
    I think Hallmark needs to consult with caregivers on the front line, such as the patients themselves, the family and ESPECIALLY the hospice nurses. I know I have many stories to tell. I could come up with so many ideas.
    Another recommendation for cards is 1) to leave them blank, allowing friends and family to fill in their own words, 2) patients want to know they mattered…so tell them ‘Thank You’ and share a story about how they changed your life (we encourage families to say this all the time and I try to add this to sympathy cards ); 3) people want to know they’ve appreciated (goes along with #2); 4) they just want to know they’re loved; 5) families need to know you’re there to support them (physically or in prayer); 5) simply say “I love you.”
    We have become a society who shuns death. We cover it up by ‘dressing’ the person up in the casket and making them appear ‘presentable’. And not that long ago, funeral and wakes were held right in the home. I’m so glad you initiated this idea, like I said I don’t know why I didn’t think of it. I guess, it’s partially because this is just what I do on a daily basis. I try to call the person or visit as much as possible but I have sent cards too. I personally like to send cards to the family several weeks after or on special occasions, such as the patient’s birthday or a holiday that was special to them. Just to remind the family, they are not forgotten. I’ve stayed in contact with several former clients’ family members too.
    With hospice, it’s not just a job, you gain a family.
    Regina, I would love to speak with you. Is there any way we could do that outside of this blog?
    Christy, hospice at heart

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    1. Dear Christy,

      Thank you for your in depth response from the front lines. We need to get the conversation started. You can reach out to me on Twitter or Facebook. I am Regina Holliday on both.

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    2. Sorry I haven't gotten back to you. I have not set up a facebook acct. yet. Right now I am in the process of doing school as well as trying to move out of state. Needless to say things have been kinda hectic. We will be talking soon.
      Christy

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  14. More and more of us are becoming passionate about our legal right to be cared for at home after death. Why did bathing and viewing the bodies of our loved ones become an expensive and 'off site' professional commodity? Home after death care helps normalize death for children and for all who arrive to help with the gentle chores of food prep, story telling, altar and coffin decorating, and body care of the dear familiar recently dead. Thorough shampooing and bathing of the body brings visceral assurance that the loved one's essential nature has departed, yet their precious countenance remains safe and honored in a room filled with candles, flowers, or sacred objects. Otherwise, the body is refrigerated in storage while waiting for the paperwork to be completed before disposition. In most states the family has legal right to use their own vehicle to bring a body home from a hospital, morgue or nursing home for a home funeral. It may seem weird to consider all this....until you experience it. Then most absolutely want this for their own dying time. More info: Final Passages, National Home Funeral Alliance, or book of state legalities and practical skills Final Rights by Slocum and Carlson

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  15. Thanks Margy for your passion on this topic.

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  16. Thanks for your Hallmark campaign. What a fine idea and it sounds like Hallmark is listening.

    My Mother passed away from Alzheimer's late last year. And the quality of end of life has been on my mind.

    There are many small things we can do to improve that passage. You've identified one that makes the journey more pleasant.

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