Why This Blog?

After some discussion, we have decided to add a blog to our website. In today’s world, a blog offers people a place to share ideas, stories and solutions to problems.

Things that you may be having difficulty with that others have found solutions to.

My journey with Caring Is Not Enough has taken me to many places. I have met wonderful people who face each day the best they can. I have met others who are seeking guidance from me as a nurse with 44 years of experience. I have been on the radio talking to audiences who call in and ask terrific questions about very personal issues, mere voices with whom I can connect.

Most importantly, I have tried to open up the discussion of death and dying with dignity for many people. Talking about your last wishes, writing them down, documenting personal information….opening up the paths of communication between family members and trusted advisors and friends.If this Blog can enrich the conversation, I will have succeeded.

Caring Is Not Enough book by Terry Ann Black

Please join our discussion. Every week we will have the next question from the book. There are 120 questions. We can have great discussions! For that go here.

Everyone should have a copy of Caring Is Not Enough, My Last Wishes and Personal Records. We have made it available in an ebook download on the website, or as a very nice, spiral bound hard copy book for $11.99, available from Amazon.com or you can just click on our website, www.caringisnotenough.net .

Responses

  1. This is a very valuable booklet to possess. I have several friends who would have benefited highly from filling it out.

  2. Your book and the empowerment it holds to those who must deal with their loved ones estate is a precious gift. When I filled out my book I realized that it was an act of compassion to assist my partner and friends in the event of death or emergency. Thanks.

  3. And now, as we watch the devastation and death from the hurricanes, your comment becomes even more applicable. Thank you for your insight and your consideration for your family. They love you for it.

  4. In December one or two years ago I bought the last remaining (used) copies of the book Last Wishes. Today I see another that I also bought (a single copy) “My Last Wishes” which I do not like nearly as much. For use by a protestant pastor.

  5. I am not at all sure you are speaking of “Caring Is Not Enough, My Last Wishes and Personal Records”. My book is always available. It would not be sold as used, as the owner would have written in it. Mine is a book of questions…

  6. This is an email from an RN in Southern California:
    “I am also a longtime RN (Surgical ICU) and liked your comments about the nurse-written article in the NYTimes that I clicked on the link. To my surprise your booklet had been given to me this past fall by a friend in Oakland, Ca. ( I live in Santa Barbara)
    I wanted to say how much I appreciated your comments, as well as the work you are doing to help people get their affairs in order. Great work! Thank you!”
    P.L., Santa Barbara

  7. My sister supported her grandmother for 12 years in a caregiver capacity – I wish I could have given her your book. It would have been a real help in getting thru the tougher days. Keep blogging!

    • Thanks Bryan for bring this to the blog. Thousands of people have told me remarkable stories of how their lives could have been made so much easier if a family member had used Caring Is Not Enough to document their most important information. It is truly a gift for everyone to have this information available.

  8. it was very helpful to me to read nytimes article “taking care: helping loved ones as they age” dated 12-18-07 and also nytimes article “choosing your own exit” dated 1-28-09, in addition to many other articles written in the new york times “new old age”. this led me to your site. ( i hope i haven’t written too much, i’m just very proud of my Mother and how she handled her own passing )

    my mother passed away june 2008. she was diagnosed with liver cancer february 2008. liver cancer hits very suddenly and i only took care of her for four months, although at the time it felt like much longer.

    i think my mother did everything right regarding her passing so i want to share it. first of all, she had made a health care proxy years ago, which stated that she wanted a “pain free and dignified” death; “medication for pain even if this meant shortening her life”. secondly, upon learning from a doctor that a ct scan (i think that’s the name for it) said it was cancer of her liver but that a biopsy was necessary to know for sure, she immediately said “no”. at the time i was shocked because i thought we should know for sure. afterwards i realized she was right. why should she suffer though a biopsy. she obliged me a couple of weeks later after she was home from the hospital and we went to see her doctor and he gave her a prescription for a PET scan — that told us everything we needed to know regarding the fact that she was going to die. thirdly, she decided that she wouldn’t have any treatment that could possibly extend her life. she told me that she did everything in terms of treatment ten years ago when she had cancer of the uterus because with that there was a chance of a cure. she also told me that she didn’t want to extend her life and destroy the quality of life she had left. i know that my mother thought all this out years ago — that she had decided what she would do if she was ever given an incurable diagnosis. in other words: my mother was prepared. this made things easier for me.

    i didn’t really take care of my mother so much as looked after her because all i did was facilitate her. she made all decisions. that was a gift to me although that was just my mother being herself — she was always like that. she was a very independent, very strong, very determined, and very smart person.

    during those four months, while i was looking after her, i used to worry that she would fall and break something and end up in a hospital and then she wouldn’t be able to be at home where she wanted to be. i slept very lightly those four months because she was always getting out of bed at night to use the bathroom. i was attached to her in a way that i would wake up when she woke up. i’ve told people that it was like having a new born but without the joy. i would go downstairs and assist her or at least just be there whenever she woke up. she didn’t want my help, at least during the first couple of months, and i was very careful to keep my distance as much as i felt possible. she would say to me “what are you doing up” and i would say “oh, the dog woke me up – i had to let her out in the yard”. i did tell her, eventually, of my concern about her falling and i know she made a concerted effort not to fall. and you know what — she got up every day of her life except the day she passed away — and she never fell.

    before she left the hospital, after her diagnosis in february, a hospital staff member came to her room and asked if she wanted hospice care at home — thank goodness for that !

    in june when her pain became suddenly worse and uncontrollable with the pain medications she was taking, a hospice nurse came overnight and gave her morphine. unfortunately, that did not control her pain. also, a hospice doctor came and said she needed to be in the care of a hospice hospital, and she spent 24 hrs. in a hospice floor of a hospital before she passed because she needed intravenous pain medication in order to control the pain.

    i wish she could have stayed at home because it would have been easier for her. at the time, i did not know that the hospice nurses and doctors cannot give intravenous medication or even injections. if i had known that i would have made other arrangements in case her pain became uncontrollable.

    there were a few other things i wish i had done differently, like being more upbeat but i was so tired and i didn’t know how long she was going to live, how long i could last in the situation; expressing my love for my mom a bit more — even though my mother didn’t like any kind of mushy stuff — i think i could have gotten away with showing more little kindnesses than i did; talking too much during her last hours in the hospice room — forgetting that one of the last senses to go on somebody who’s dying is their hearing. there’s probably a few other things i wish i had done differently, like maybe had some soothing music in the room when my mom passed away, ect…

    i was given good advice from someone after i decided to “take care of” my mom and that was: a) it’s learn as you go, and b) know going into this that no matter what you do, know that there will be somethings that you will wish you had done differently. so, you know, i did okay.

    when my mom passed away she had sufficient pain medication to ease her into death, which is what she wanted — i just facilitated it. even with a health care proxy and everything else i still had to advocate for her when we got to the hospice hospital. i had to get on their case to start intravenous pain medication and in a gentle way so as not to put them off when all i really wanted to do was scream at them — i’m glad that i didn’t because the doctors and nurses ended up to be very caring people — i did not scream but with my words and my passion i made two doctors and one nurse cry. which then made me cry. they then started the pain medication.

    i wasn’t there when my mom passed; i didn’t feel the need. i felt the work was done. If i wasn’t so tired and strung out i would have stayed with my brother and my husband. (as it was, i took the opportunity to drive home the home health aide that was provided by the hospice program — i wanted her to get some rest in case we needed her later that night.) i left a book for my brother to read to her — my mother was in the middle of re-reading an agatha Christie book (her favorite author, a hercule peroit book) before she went into the hospice hospital.

    my brother told me that after he was reading to her for about an hour and a half a nurse came in to moisturize my mother’s lips and my mother smacked her lips together like a person would after applying lipstick. So the nurse asked her to smack her lips together again if she hears her, and my mother did. my brother, being the beautiful person that he is, said “let me try that” and he swabbed my mother’s lips and she smacked her lips together again. then my brother took the opportunity to tell her that he, myself and our two sisters would all look after and take care of each other. he kissed her on the forehead and she had one tear come out of her eye and she passed. the pain medication eased my mother’s pain and my brother’s words eased her mind. i told my brother it was like that song by simon and garfunkel “like a bridge over troubled waters i will ease your mind”.

    my mother made all her decisions, I looked after her for four months at home, my sister stayed overnight with her during that 24 hour period she spent in the hospice floor of the hospital, my brother was there when she passed. we each shared what needed to be done, and we are all looking after and taking care of each other.

    — Claire Ann

  9. Thank you, Claire Ann, for your comments. It would certainly be a wonderful world if everyone was as thoughtful as your mother, and everyone was as respectful as you and your brother.
    My book is certainly a great help for families. It identifies just what each individual wishes. Your mom got it right!

  10. thank you. good luck to you and continued sucess with “caring is not enough”!

  11. hmm very interesting. My mom died from cancer and before she died we used hospice.

  12. How fortunate that you were able to have Hospice care for your mother. Death and dying,are at best, very difficult to deal with, and when it is a close relative, the efforts and effects are even more dramatic.
    The hard part is dealing with everything beyond the death and that is why I wrote my book. It is such a great place to document the necessary information for those left behind. http://www.caringisnotenough.net
    Your art and furniture is beautiful!

  13. Thanks for this. I saw your website and it inspired me to make my own booklet for this information. I gave the idea to my friends and family and we all do it!!! Sorry about not buying your book, but I had an idea like this some years ago so I don’t think it’s worth buying. BUY BUY!!

    • Thanks, Brad. Kudos to you for working through these issues. I think many people wish to have all of their last wishes and personal record in writing, but really do not know where to begin. What I have done is organize the questions and put them in a tidy little book for reference. They should be reviewed biannually. If everyone would follow your lead, perhaps with a little help from my book, they could have such great peace of mind.
      Happy Holidays!

  14. Interesting site. Death and dying is a taboo subject that needs more coverage. Good work.

    • Hello Eric: Thank you for your insightful comments. Yes we need to lift the great taboo and open up the discussions on death and dying. It has started to happen, much more so than when I began nursing in 1965. Perhaps we can, being on different coasts, start a discussion and meet in the middle!
      I will be happy to reference your website..www.elderguru.com. Hope you will do the same for me:)

  15. Thank you for writing and sharing this book with us Terry. The information you impart is invaluable. Great job you are doing – please keep it up!

    • Thanks, Genie. Encouraging people to consider their last wishes is a difficult task at best. So is trying to encourage healthy living! Thanks for your great website as well. I will list it on my blog and hope you will consider doing the same for me. Cheers! Terry

      • Hello Terry, it’s been almost a year since this post but the information you have to share is timeless. I have dedicated a page on my website to you and the great work you are doing. You can view it here http://www.healthylivingnow.org/health/one-important-security-decision-you-must-make.html and let me know if there is anything you would like to add or take away from it.

        Looking forward to hearing from you and please do keep up the great work! Cheers!

        “If we all treat each other like we treat ourselves – what a wonderful place earth would be.”

      • Oh Genie! What a wonderful write-up. :-) Thank you so much for your kind words. The only thought I have is that people may want to buy the hard copy of Caring Is Not Enough.It is available on Amazon or by mail from my website. Some people just do not want to download an e-book. The price is the same no matter what, $11.99. Your website is beautiful and informative. I will tell friends and co-workers about it often! Best, Terry Black http://www.caringisnotenough.net

  16. http://www.healthylivingnow.org

    • Thank you. It’s my pleasure to help you get the message out. I have added a link to the hard copy at Amazon.

      “If we all treat each other like we treat ourselves – what a wonderful place earth would be.”

  17. Totally agree with Elderguru.com. Very glad I found you through a comment you posted to a WSJournal health forum. Thank you so much for providing an invaluable tool for families. Working on a totally revamped and improved website for http://www.atpeacemedia.com. When it’s up and running I will include in our new blog a reference to you and what you’ve created in the category of stress-reduction. Would you be interested in possibly doing a Q and A with me at that time? Many, many thanks.

    • Hello Jan:
      Thank you so much for your kind comments. I think, ultimately, peace is what all of us seek. There are so many ways to seek peace and your wonderful dvd’s are a gift for making our search so much easier.
      My goal is to give peace of mind around the extremely stressful thoughts of death and family. It is so simple to fill out my book. The peace of mind felt after doing so surrounds one with so much comfort, it is hard to elucidate.
      I am happy to do some Q & A any time with you.
      I recommend your website for anyone seeking comfort from the stresses of today.
      http://www.atpeacemedia.com
      Thanks,
      Terry


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