Hospice Care Center

November 14, 2008 at 11:10 am 67 comments

On Tuesday (Nov. 11) I moved Mom to the hospice care center. Although she had been receiving hospice care at the assisted living facility since mid-August, after her fall on Sunday (which could have been prevented) I lost all confidence that the assisted living facility could keep her safe. She is receiving much better care now.

Sadly Mom’s “recovery” at the end of last weekend, while spectacular in comparison to being totally non-responsive, only returned her to the cognitive level she was before the downward spiral: extremely confused and dependant on others for her most basic needs. She can’t, for example, remember how to sit. She has  to be “cued,” the process broken down into micro-steps. She has to be supported and walked to the chair, rotated, coaxed to take a step backwards, told that what she feels on the back of her legs is a chair, her hands placed on each arm rest of the chair (a fairly long process if she is holding on to something else at the time) and told to bend her knees. Sometimes that won’t even help as she will lock her knees and refuse to bend. We re-approach and start again from the beginning.

Still, the few bursts of “clarity” she experienced, whether stray phrases from the past temporarily unlocked or true thoughts allowed to exit, were moments I will always treasure. With the “recovery” came a period of what I can only describe as hyperactivity. She was almost constantly in motion, trying to sit up, stand up, moving her arms around, reaching and “picking up” unseen objects, picking at her clothing, pulling at her fingers. I don’t believe she slept more than a few hours in two days.

She has not eaten anything since Tuesday and adamantly refuses food or drink whenever it is offered. We are by her side, just waiting. Her body is telling her it’s time, but her spirit just isn’t listening. I am not surprised. This is the woman who never wanted to leave a party, or stop sewing (or painting, weaving, or dying fabric) until she was ready to fall down from exhaustion because she was afraid she would miss something.

Without nourishment of any kind she is, amazingly, still able to stand and walk with assistance. She is alternately agitated and confused, or sleeping peacefully.

The strange ability to speak some coherent words every once in a while has diminished, although she did seem to know who I was for a moment and called me by name. On Wednesday, I told her it was my birthday and she said, “Happy Birthday.” Yesterday she said, “I love you, Pussycat.” I don’t think at the time she knew that was anything beyond just a phrase she used to say, but since she used to say it to me and I happened to be there to hear it again, I am grateful for the gift. As soon as she uttered it she was gone again.

Jennie and Steve are with me and I feel your prayers and support.

Thank you,

Ami

Entry filed under: Mom. Tags: .

More Ups and a Down Hospice Continues

67 Comments Add your own

  • 1. Quiltdivajulie  |  November 14, 2008 at 11:41 am

    My mother wouldn’t “let go” either… she astonished her caregivers, just like Beebe is doing… treasure the time you have and that you can be fully present… your shared journey will sustain you later. Blessings to each of you ~

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  • 2. Frank Palmer  |  November 14, 2008 at 11:52 am

    I can’t say anything that a hundred other people won’t already say. I do hope you find strength in that. Our thoughts are with you and your family.

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  • 3. Shirley  |  November 14, 2008 at 11:53 am

    Dear Ami,
    I feel and share your sorrow and pain. I believe the small moments of clarity are Gods gift to you and your family, a reward to you for being there for your Mom, not just today, but your life together. My prayers and thoughts are with you. Shirley

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  • 4. Janice  |  November 14, 2008 at 11:56 am

    Ami…it is with tears in my eyes I read this & respond….Cherish those words your Mom spoke to you…”Happy Birthday & I love you Pussycat”. Even if it was only for that one moment that she was “there with you” she connected, she remembered and she gave you this gift, maybe a final gift. Say thank you to God for this precious gift. You are in my thoughts & prayers as you watch her little body grow quiet. You have been a good & faithful daughter and have no regrets.
    Take care of yourself & get some rest, hard as it might be to do. Know you are love & prayed for. Janice Martin in Boerne, TX (I took your twisted sisters class in New Braunfels, TX several years ago…thank you for your joyful attitude)

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  • 5. Joy  |  November 14, 2008 at 11:57 am

    Ami, my thoughts and prayers are with you as you watch your precious mom fade. I hope you will continue to remember the good times with your mom as she was before this cruel disease ravaged her.

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  • 6. Judy in Austin  |  November 14, 2008 at 11:58 am

    Praying for you for strength and peace. You obviously already have love surrounding you, by your husband and daughter, and yes, even your Mother. She clearly cherishes you and hates to leave. May God give her grace to let go…..

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  • 7. Rae Linda  |  November 14, 2008 at 12:02 pm

    God Bless you Ami for giving us these bits of insight into the life of a person dealing with this unfair disease. It really brings home that we need to pay more attention to the small things in life as we never know if they will become the big things in later years. The moments we will forever treasure. God Bless Beebe through her journey and I hope that when she finally gives up, it is the most peaceful experience ever.

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  • 8. Ann  |  November 14, 2008 at 12:03 pm

    We send out love and prayers tor you and your family at this difficult time

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  • 9. MaryAnn  |  November 14, 2008 at 12:05 pm

    Please know we are all praying for all of you in this difficult time. I have found in my own life there never is a good time to say good bye, we want one more day, one more hour, one more moment and I think thats what your Mom is struggling with too.

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  • 10. Barb Meppelink  |  November 14, 2008 at 12:13 pm

    Ami and Family,

    My love and prayers are with you as you walk the final steps. Reading your journey takes me back to my journey…difficult, but with the wonderful Hospice care you will walk this journey with peace.

    Barb

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  • 11. Margaret Light  |  November 14, 2008 at 12:19 pm

    Ami: My heart is so very heavy for you, Steve and Jenni. I know it may seem a strange statement, but I pray Beebe will be at peace soon. She has struggled mightily against this terrible illness and now has more than earned the rest that granted. May time be kind to all of you. Remembering you and Beebe in my prayers. Love Margaret

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  • 12. Gail McClure  |  November 14, 2008 at 12:20 pm

    This is a big on line hug. We love what you have done for making all of us aware of what has happened to your mom. You can’t see the tears coming down my face right now, but the feelings are there for you and your family. Thank you for sharing your mom with all of us. Gail

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  • 13. Deborah  |  November 14, 2008 at 12:21 pm

    Ami, all I can say is God Bless you all; take care; everyone is praying for you and thinking of you.

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  • 14. Linda Whaley  |  November 14, 2008 at 12:27 pm

    Ami,
    What a wonderful parent and teacher your mom is to you and your family even during these final months, days, and moments of her time on this earth! I can tell you have a compassionate heart and an understanding spirit that can only be gained through staying by your mom’s side. It is hard, but you will be blessed by sharing her journey.
    My thoughts and prayers are with each of you.
    Traveled this road myself,
    Linda

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  • 15. Penny Rongo  |  November 14, 2008 at 12:28 pm

    Just wanted to let you know that after reading the Nov 14th instalment of “Through the Eyes of a Quilter” that my thoughts and prayers are with you and your family at this most trying time.

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  • 16. Sue Rankin  |  November 14, 2008 at 12:34 pm

    Ami,
    It was 14 months ago we were in the same place with our mother. It is so difficult to be the honor guard, waiting on every breath. But, an honor guard it is, and even though we have no idea if our loved ones know it or not, it is our last gift to them, honoring their lives to the end. I pray for strength or you and your family and the presence of God’s love we felt so strongly in Mom’s last moments in the golden light of that late summer day.

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  • 17. Sandra Bogin  |  November 14, 2008 at 12:34 pm

    Ami my sweet friend, my heart is with you and Beebe. I am glad you had a few moments when she seemed to be with you. Beebe was such a monumental influence in my life. I am glad her “legacy” lives on in you .

    hugs

    me

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  • 18. Melinda  |  November 14, 2008 at 12:44 pm

    It takes the body a long time to give up. My dad chose in May 1999 to no longer live and gave up eating and drinking. He didn’t die until August 15, 1999.

    Treasure the happy moments.

    Much love and prayers.

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  • 19. Jannette  |  November 14, 2008 at 12:49 pm

    Oh Ami – My heart goes out to you…..
    It’s so hard to watch this process unfold – and as much as we’re ready to let it happen, we’re still hoping that it doesn’t.
    You’re in my thoughts and prayers.

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  • 20. Humbly  |  November 14, 2008 at 12:50 pm

    Oh Ami! The waiting is always the most difficult and frustrating.
    But you have the strength and strong support to help endure, and it started with you, you know. You have the God given strength and know just what you must do and are doing it. I am so very glad you moved her into a safer environment.
    Maybe at a future date I will share with you what I experienced with my Mom – now is not the time. I leave you with all my prayers, surround you with hugs that merge with those coming from others and a promise that all will be well.

    Take care of you……..
    Mona

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  • 21. Ruth Garrett  |  November 14, 2008 at 12:59 pm

    What a gift to hear “I love you” from your mom one more time! Blessings to all of you and especially your mom.

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  • 22. cathy  |  November 14, 2008 at 1:00 pm

    bless you and yours ami. you are in our thoughts.

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  • 23. Sequoia  |  November 14, 2008 at 1:21 pm

    Ah Ami, thank you for sharing this phase of the journey.
    I am holding you in the light. I am so glad that you had those few moments of connection this week.
    My mother hung on at the end, until my sister told her that we were ready for her to go. She passed on an half of an hour later.
    Sending you a hug across the miles,
    your friend in Mattawan,
    Sequoia

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  • 24. Karen Wright  |  November 14, 2008 at 2:39 pm

    I am praying that you and Beebe will get through this with the grace of God and the grace you have always shown us. God be with you to comfort you and give you the peace that surpasses all understanding

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  • 25. PEG  |  November 14, 2008 at 2:55 pm

    Ami:
    My heart goes out to you and your family. I went through a similar experience with my own Mom (and then again with my Step-Dad) toward the end and reading your recent entry I felt a pain in my heart that only those experiencing these events can relate to. You’re a great daughter and down deep inside Mom knows that!

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  • 26. llynnda  |  November 14, 2008 at 3:34 pm

    Ami, thank you so much for sharing your life with your Mom. You and your Mom are definitely in our thoughts and prayers . I feel that I am reliving the experience with my grandmother all over again and I can feel your joy and pain. Enjoy every minute with her, be it joyful or difficult.
    prayers for you and your family.

    Llynnda

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  • 27. Mary Ellen Zeitz  |  November 14, 2008 at 4:02 pm

    Dear Ami – Thank you for sharing your Mom’s final journey with us. I remember the agony of watching my parents travel much the same road. Peace be with you and your family.

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  • 28. Janet Swift  |  November 14, 2008 at 4:19 pm

    Ami,
    I know only too well the road you are traveling right now with your dear mom as I traveled it with my mom just 3 years ago. My thoughts and prayers are with you all.

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  • 29. Anna in IL  |  November 14, 2008 at 5:39 pm

    Ami,
    I hope that when the time comes, she passes swiftly and peacefully. The brief snatches of “Mom” will add to the memories that you will always treasure.
    Hugs from Northern Illinois,
    Anna

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  • 30. Barbara  |  November 14, 2008 at 5:43 pm

    Dear Ami,
    My thoughts and prayers are with you. It was difficult to read your last blog because I identified with it so much. I can remember exactly when and where my mother last called me by name. Be assured though, she does know who you are, even if it is not expressed. She also understands more than anyone realizes, even though it may be in small spurts. Mother had not spoken in ages, and after celebrating her birthday with her, my girls, my husband, and I were standing at the foot of her bed discussing the rest of the day — when out of the blue — she blurted out “Don’t Go!”. That was all, but it was enough to know she “heard” a few things. Hang in there and know there are many people knowing and understanding how you feel.
    Thinking of you often,
    Barbara

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  • 31. Bonnie  |  November 14, 2008 at 5:49 pm

    My thoughts and prayers continue to be with you. When you close your eyes, please feel the loving embrace of thousands who are with you.

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  • 32. Mary E. Williams  |  November 14, 2008 at 7:11 pm

    Thoughts and prayers are with you and your family, as always.

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  • 33. Toddy Sumsky  |  November 14, 2008 at 7:29 pm

    God bless you all and hold you in his arms. Thank you for sharing you journy with us.
    Toddy, in St.Pete Florida

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  • 34. Gail Steffen  |  November 14, 2008 at 7:45 pm

    My heart is with you, my mother blessedly could die in her sleep .
    You have done a great thing for the victims of this illness, not only the person who loses the memories, but those who have to watch.

    God Bless, Gail

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  • 35. Hilary Neumann  |  November 14, 2008 at 8:11 pm

    Ami – time is all that matters now. Cherish every moment & remember every on of us will hold Beebe in our prayers now and forever! A big group hug for you, Jennie & Steve – Hilary

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  • 36. Peg Howard  |  November 14, 2008 at 8:12 pm

    Thinking of you all….
    ah yes a woman who liked to be on the GO!!!!! :)30 years my JR she walked cirlcles around me!

    Love,
    Peg

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  • 37. Terre Fernandez  |  November 14, 2008 at 9:09 pm

    Ami, my heart goes out to you, Steve and Jenny. You so aptly describe what we went through just two years ago. I’m so glad you are able to be there to catch those fleeting phrases and memories as they come to her. She is so blessed to have you now as you have been to have had her all these years. Treasure what ever is left. I am deeply sorry, after all the years of the adventures you and Beebe have shared with all of us. You both are such a blessing to a whole world you will never meet. Thank you for sharing her and your life.

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  • 38. barncat  |  November 14, 2008 at 9:54 pm

    Ami, you and your famiy are in my thoughts and prayers at this time. Please continue to enjoy the little “gifts” that you are experiencing, they will stay with you for a long time.

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  • 39. Eileen Hagen  |  November 14, 2008 at 10:05 pm

    My heart goes out to you and your family, Ami. I signed my mother up today for hospice care and she, too, is in assisted living. She had a devasting stroke 5 years ago and did really well for quite a while. In the last year there has been a steady decline. It breaks my heart. Just know that your mother must feel all your love. You are in my thoughts and prayers.

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  • 40. cindy  |  November 14, 2008 at 10:27 pm

    sending you prayers in this hard time. cling to the wonderful memories. ((((hugs)))
    cindy

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  • 41. HelenMarie  |  November 14, 2008 at 11:44 pm

    Ami, you continue to grow in age and grace. Thank you for sharing this experience with everyone, and for being such a wonderful champion for research that others may benefit.

    I know I speak for many who have known you and met Beebe, when I say you and all your loved ones are in my thoughts and prayers.

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  • 42. Mary Noel  |  November 15, 2008 at 12:24 am

    Ami you are in my thoughts and prayers also. What a difficult challenge you have right now. My mom is getting closer to those last stages of life also but my dad will never allow her to leave their house. We shall see where that takes us.

    You are such a wonderful, dear person to be keeping us all posted as to what is going on in your life right now. We thank you for thinking of all of us.

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  • 43. glenda  |  November 15, 2008 at 2:54 am

    So many of us have been down this very road. Our hearts and prayers are always with you and your family. I really do feel your Mom knows you are with her. May God show all of you his love and peace at this very difficult time.

    You are your Mom’s very special daughter!!

    luv

    glenda

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  • 44. Sharon Worrell  |  November 15, 2008 at 3:01 am

    Dear Ami,

    I imagine just about everyone over the age of 50 has lost a loved one…It’s something you don’t think much about until it happens to you. BUT when it’s your Mother, it’s one deep, dark place to walk through! Your loyal fans (friends, all) are with you in their hearts, colored by their compassion and experience. It is bitter-sweet to read your words, and I’m grateful you’re recording the “Pussycat” moments! God bless and keep you…

    Love, Sharon

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  • 45. Sue  |  November 15, 2008 at 8:07 am

    Ami,
    I am thinking of you and prayers are said for your family and peace for your Mother. She is fighting a mighty battle. I held both of my parents in my arms when they breathed their last and it still brings tears to my eyes but a memory I’ll alway cherish. They brought me into the world and I was there with them when they left this earth. Not a day goes by that I do not miss them and I understand your heartache. You are a good daughter and have the profound love and devotion that I hope my children will have someday. May the Lord bless and keep you. Sue

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  • 46. Susan  |  November 15, 2008 at 9:07 am

    Please know that your mother, you and the rest of your family remain in my daily prayers.

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  • 47. Nora J  |  November 15, 2008 at 10:08 am

    Wishing PEACE for your Mom, you and your family!

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  • 48. Judy Madison  |  November 15, 2008 at 11:29 am

    Ami
    As I read your daily encounters with you Mom, my heart is moved with compassion. I pray God will sustain you and your family. Please know that you are loved and many of us are praying for you. May God bless you.

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  • 49. Deb Sims  |  November 15, 2008 at 11:44 am

    Dear Ami,
    The human mind is truly a marvelous thing and we have so little understanding of how it works. Likewise the human spirit. My mother experienced many of the things are are seeing just before she turned loose and moved on to the next life. For several days she had long talks with my dad who has been gone since 1976. She would turn in her hospital bed as thought he was standing next to her and talk to him. Although most of what she said was not clear she did call him by name. I believe he was there beside her, supporting and encouraging her to take the next step. She also quit eating and refused her medications. I believe that somewhere down under all the confusion, she was, as she always had been, in charge of her life, and had decided she was ready to go. It gives me some measure of peace to know she is whole again and with my dad and her grandson. I will be thinking of you as you go through this transition time.
    Sending love and hugs,
    Deb Sims

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  • 50. Judy Leathers  |  November 15, 2008 at 7:50 pm

    Ami,
    It is so important for people to know what you and your mother are experiencing now. Thank you for sharing this touching and vivid picture of the struggle Alzheimer’s demands. I hope that you will post your writings on all sites and perhaps write a book someday.
    Everyone needs to hear this and no-one dares to ask us when we have suffered through it. Through your postings over the years, you have actually written a beautiful story with wit and clarity included among the sadness. Thank you so much.
    Judy

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  • 51. Sandy  |  November 15, 2008 at 10:10 pm

    Please know that you and your family are in my thoughts and prayers.

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  • 52. Maureen Capps  |  November 15, 2008 at 10:36 pm

    No words are enough to begin to say all that I would like. My thoughts and prayers are with you all. Cherish these mouments. Peace and love to you all.
    Sincerely,
    Maureen Capps

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  • 53. Georgette Amory  |  November 15, 2008 at 11:32 pm

    Ami,
    I am truly sorry to hear of your mother’s changes. I feel blessed to have been awarded that day of sharing some entertaining moments in your families lives! Thank you for that. I will keep you and your family in my prayers. I hope you can find some comfort and strength in the amazingly supportive and kind words expressed on this page by the many individuals pulling for you. I know we were only able to speak for a short ride, but you have made an incredible impact in this phase of my being. I am greatful for all you do in your research. Thank you again!

    Georgette Amory

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  • 54. Judy McNeel  |  November 16, 2008 at 2:05 am

    Ami, I pray the Lord will comfort you and your family as you are going through this difficult time. Thanks for keeping us updated.

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  • 55. Judy Anne Walter  |  November 16, 2008 at 3:05 pm

    Ami, Although I am bouncing between NYC and Boston, mentally I am with you, Beebe, Jen, and Steve in Michigan with the next steps in this journey. My thoughts are with all of you throughout the day.
    Much tender love, Judy

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  • 56. Debra  |  November 16, 2008 at 3:24 pm

    Dear Ami,
    We went through something similar with my Grandmother and I understand your pain. Do look after yourself, I know it is a draining process. My prayers are with you. Deb

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  • 57. dori hawks  |  November 16, 2008 at 8:13 pm

    How special those moments are with your Mom…thinking of you, your Mom and your family.

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  • 58. Suz K  |  November 17, 2008 at 11:00 am

    you, your mom and your family are in my prayers. We aren’t at this point with my mom, yet – we’re just dealing with other things, like her kidneys starting to shut down, which diminishes her memory as well – so I can image how hard this is. Seeing mom not remember her best friend, who passed away a few years ago, or her next-door-neighbor where she lived a month ago, is hard – I can’t even think what it will be like when she can’t remember us. I warn my cousins and old family friends when they go to visit not to be upset if she doesn’t remember them – it will just depend on the day.

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  • 59. Laura Robins-Morris  |  November 17, 2008 at 11:04 am

    Thank you so much for sharing these times and thoughts. It’s truly a gift to us.
    Laura

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  • 60. Gerry  |  November 17, 2008 at 1:40 pm

    Tears in my eyes as I write this… I lost my mom to heart disease 3 years ago, and will be eternally grateful for the time we had at the end, knowing she would only be around a short time. Losing your mother leaves a hole in your heart forever, but your loving memories of her will help fill it up. Talking about her with relatives and friends keeps her spirit alive. Our thoughts and prayers are with you.
    Gerry

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  • 61. Jeanne Turner McBrayer  |  November 18, 2008 at 2:36 pm

    Thank you for sharing such a personal and touching story. We are all so sad that you had to give up your visit to Raleigh this week. Please know that so many of us are with you in thoughts and prayers.

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  • 62. Carol  |  November 18, 2008 at 5:49 pm

    Ami- you and your sweet mother are in my prayers. It brought me to tears as you recounted Beebe’s telling you that she loved you. It was the last thing my mother said to me and that memory and moment will remain with me forever. I hope that all the good thoughts and prayers that are being sent you way will help you through this passage.

    Carol

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  • 63. Mama  |  November 18, 2008 at 5:57 pm

    I am new to your blog, but not to your web site. I lost my Dad 4 years ago to the same disease. My heart is breaking and tears are flowing as I read your last post.

    I am praying for you and your family.

    Ruth
    Washington, DC

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  • 64. Bonnie  |  November 19, 2008 at 9:13 pm

    I continue to pray for you and your family. May God grant you strength, faith, hope and love.
    Bonnie

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  • 65. Susan Cleveland  |  November 21, 2008 at 2:49 pm

    Ami,
    I’m keeping you, your mom, and the rest of your family in my prayers. I wish I could say something more helpful but just don’t know what that would be. God bless you and give you strength and understanding.
    Susan

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  • 66. grannysquare  |  November 22, 2008 at 3:41 am

    My Mother is 94 and I am 59. She still tells me to get ready for school and do I have my books because the bus is coming. We have trouble getting her to eat also. But every clear moment we have is priceless. When it is time for her we will be able to handle it but until then I have my school books and my lunch ready to catch the bus. Molly

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  • 67. Debbie Johnson-Lanholm  |  December 3, 2008 at 7:35 pm

    Dear Ami, My thoughts and prayers are with you at your time of loss.

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