Hospice Continues

November 22, 2008 at 10:33 am 102 comments

Mom continues to fight with strength seeming to come from nowhere. She has allowed us to feed her small amounts of soup and apple sauce, Jello and other soft foods, some liquids, but I can’t tell you when that started because all the days seem the same to me. I can’t imagine how the small amount of food she has consumed can sustain her. She weighed 84 pounds sometime in October; I can’t imagine what she must weigh now. She looks more emaciated than any body I have ever seen.

Mom sleeps most of the time. She goes through periods of apnea when she stops breathing, sometimes for as long as 20 or 30 seconds and then starts up again. I try not to listen to each breath, but it’s difficult not to. When she is awake she stares upwards and to the right. I sometimes move to where she seems to be looking, but there is no focus there.

Her words are gone. It has been days since she attempted to speak. If she is startled her face shows panic. Although I don’t think she understands the words, telling her the bed is going to move, someone is going to change her, or roll her over, for example, goes a long way to keep her from becoming startled.

The beds at the hospice care facility can be lowered all the way to the floor to prevent falls. They put gymnastic mats on the floor on either side. It has been several days since I saw Mom even try to get out of bed. The staff no longer walks her to the toilet or commode. They change her and bathe her in bed. The most movement I’ve seen is when she tries to get her arms out from under the covers. She no longer can turn over herself. She has to be turned.

I am a little slower moving these days too, not surprisingly. Getting up in the morning is harder, getting ready takes longer, eating is a chore. The drive to hospice is about 30 minutes, along the same route to the elementary school I used to teach at. (Yes, I have gotten in the wrong lane exiting the freeway, my brain on auto-pilot and obeying signals from the early 80’s to go to school.)

I bring sewing and computer work to do, but don’t seem to get anything done. I hold Mom’s hand or stroke her hair, tell her I love her, and watch her breathe. I play music on my iPod for her, classical stuff mostly and songs from her era. I don’t know where the time goes. I sometimes go back after dinner to be with her too, but I’m trying not to if only to pace myself. At night I fall into bed, get up, and do it again. 

The hospice staff has been excellent, and the idea of being actively involved in the dying process seems to make a lot of sense. Alzheimer’s complicates this, however. Verbal assurances of love, forgiveness, remembrance, and acceptance are communications Mom’s damaged brain can’t receive. Before this most recent decline she literally couldn’t hold a thought longer than a few seconds. Yet, recognizing this sad fact in my own brain doesn’t stop my heart from attempting it anyway.

I remember early on in the disease I was always taken aback, surprised, by her strange behaviors or lack of logic. She looked like my mom, her voice was the same, her mannerisms and speech patterns identical. Yet she would say or do the strangest things and I was always fooled. As the Alzheimer’s progressed her mannerisms changed, even her gait changed. I got used to the strange language, irrational thoughts, and odd behaviors. She looked and acted differently. I expected the Alzheimer’s when we interacted. Now, when she sleeps she looks so peaceful and remarkably “normal.” Her odd reactions to the world around her are so infrequent that I am fooled again into thinking her brain isn’t broken. Oddly, that seems to help.

Thank you for keeping us in your thoughts and prayers. It will take months for me to catch up with all my unread emails, but I do read each comment you post to the blog. I’ll get to the other stuff eventually.

Ami

Entry filed under: Mom.

Hospice Care Center Her Name Was Beebe

102 Comments Add your own

  • 1. Betty Donahue  |  November 22, 2008 at 11:21 am

    Oh Ami–Please take care of yourself. I know how hard that is to do but even strong people like you can get worn down. If someone wants to pamper you, let them. This has been a long sad journey for you and your family.
    I’m sure she feels your love even though she can’t express it.
    Love
    Betty

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  • 2. Kathy  |  November 22, 2008 at 11:24 am

    Nothing I can say to make it easier. My thoughts are with you.

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  • 3. Mary Nutterfield  |  November 22, 2008 at 11:28 am

    Thoughts and prayers are with you. Take care of yourself as best you can, Ami. Bless you for being there for your mom. Mary Lou

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  • 4. Margaret Light  |  November 22, 2008 at 11:29 am

    Dearest Ami: I was checking just yesterday for email from you hoping to hear something positive, no matter how small. Beebe is still with you in body, but they tell us her spirit has moved to a better place. What a toll this is taking on you, how tired and mentally exhausted you are – not wanting to leave her, so very tired when you return. Love can be a cruel thing, and this illness brings out the best in caregivers, giving more than they thought humanly possible, only to receive no acknowledgement from the one so far removed from us. May God give you the strength to keep going, for I know that you have passed the point of exhaustion. Know that you, your family and beloved Beebe are in our thoughts and prayers. May God keep you in his arms and Beebe in His embrace.

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  • 5. Jane Zlojutro  |  November 22, 2008 at 11:32 am

    Ami,

    Hospice is such a wonderful thing. They shed light in an area that we just don’t understand. Thank the Lord for such wonderful understanding and caring people!

    I can’t even imagine what you must be feeling. Know that so many people are thinking of you and praying for you, your family and your mom. Take care of yourself!

    Jane (janethetaxnerd)

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  • 6. Theresa Nance  |  November 22, 2008 at 11:32 am

    Thank you for sharing with us your fans the details of this journey which must be, at best, terribly painful. My heart and prayers go out to you, even as I am learning piece by piece how this dreadful disease progresses. What a blessing hospice must be for you during this difficult time.

    I am praying for continued strength and comfort for you and your family, and especially comfort for your Mom.

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  • 7. Cam Wilsie  |  November 22, 2008 at 11:32 am

    My mom’s end days looked, sounded, felt exactly as you write about your mom’s, and you write with such eloquence. The pages I wrote then somehow got lost in the transition from being at the Hospice unit to the big “after” she was gone, so I treasure the way you have captured these moments.

    Although my mom did not have Alzheimer’s but suffered with congestive heart failure, she was in the same “stripped away” cycle. After she died, I looked back in wonder at this time and truly felt that I’d been held up by angels unseen and that I had had the marvelous opportunity to walk in a state of grace. Never before or since have I felt as close to heaven and God.

    Please know that those of us who have trod this path, are walking with you on yours via spirit and thoughts.

    God’s peace to all of you in the coming days.
    Cam

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  • 8. Grace  |  November 22, 2008 at 11:32 am

    Ami and family,
    My thoughts and prayers are with you. It is amazing the strength that we have when we need it. In January, we lost my dad and we were all there during the process. I remember a nurse (whomwe adored) told us, “it is a privelge for us to be there at the end”. I keep remembering what she said and it is so true. It is so difficult to do but it makes the journey more comfortable for our loved ones. It does make sense as that person is not alone in their journey. Plus I think if we weren’t, we would regret it. Take care of yourself. Allow yourself the time to grieve and to know that you are doing the right thing.
    Grace

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  • 9. sheila fuhrmann  |  November 22, 2008 at 11:35 am

    Ami, My heart is with you.Although no one i know has gone through this, my dad and a friend both had strokes. My Dad has passed and is in no more pain. My friend , who was a very active foster mom in our humane society I saw Thursday. So sad.
    I know you know that even though a lot of us have never met you , you have a world of love and support out here.
    Take care.

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  • 10. Jean Smith  |  November 22, 2008 at 11:36 am

    Ami, my heart goes out to you. Your family is in my prayers.

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  • 11. Deb Sims  |  November 22, 2008 at 11:37 am

    She may not comprehend your statements of love in the usual way but I believe she hears with her heart the things you are saying.
    Still holding you close and keeping you in my prayers.
    Deb Sims

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  • 12. Ruth Vanderwater  |  November 22, 2008 at 11:41 am

    Ami, My heart goes out to you and your family and you are in my prayers. I read your blog this morning through tears because I have stood in the very shoes you are now in. My mother died in 1987 at the age of 65 of alzheimers and you’d think that the time that has passed would soften the pain but you have put into words what I could not. She was, as my mother , gone a few months before the disease actually consumed her mind and body. I pray that your suffering will be soon past and the healing can begin.

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  • 13. Sandy Ruffino  |  November 22, 2008 at 11:48 am

    Ami, I am shedding tears for you, your mom and my mother who I lost two years ago last may, from cancer. I have not been able to shed tears for her until today. They were locked in somewhere. Listening to your mom’s struggle has released my tears for my mom and for your mom. My thoughts and prayers are with you durring this very difficult time,

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  • 14. Diane  |  November 22, 2008 at 11:55 am

    You are doing all the right things – just being in the room and touching her. On some subconscious level I believe she is aware of you. At the nursing home where I volunteer, I’ve taken to always touching the ones who allow that – a hug or an arm around the shoulders or a light massage. The music is good too – I will go in and sit with the bed-bound residents and hold hands and hum songs. They know – I have to believe they know and are comforted somewhere deep inside.

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  • 15. Barb Meppelink  |  November 22, 2008 at 11:59 am

    Ami and family, My heart breaks as I read this…even after almost 6 years for my husband and 5 years for my Mother – tears come to my eyes as I remember your thoughts as my thoughts. Please know that many people have you in their thoughts and prayers.

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  • 16. Elaine Petrik  |  November 22, 2008 at 12:01 pm

    Ami, My prayers and thoughts are with you as you go through each day. Rest, assured in the presence of God that He is with you through this very difficult time. Thank you for sharing with us such a personal journey of love for your mom and of your heart.
    God Bless You,
    Elaine in SLO, Ca

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  • 17. Christine Thresh  |  November 22, 2008 at 12:12 pm

    Cam said, “I’d been held up by angels unseen and that I had had the marvelous opportunity to walk in a state of grace.”
    That is beautiful. I know you will be held up by angels through this painful time. Lots of love is surrounding you.
    Thank you for all you do for the whole world.

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  • 18. Deborah  |  November 22, 2008 at 12:16 pm

    Many of us have been through this and I hope our collective thoughts and prayers are with you during this time. We were able to be with my mother during her last hours. My doctor told me that it is so rare these days to be with a loved one when they die. I never thought I would be able to do that but I am glad we were all with her. I hope her poor damaged mind was able to sense something – that is truly the curse of this awful disease.

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  • 19. Kathy L  |  November 22, 2008 at 12:23 pm

    Prayers for both you and your Mom to hold onto peace during this difficult time.

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  • 20. Jean  |  November 22, 2008 at 12:24 pm

    I am thinking about you and praying for you. Please take care of yourself also. Both of my parents have alzheimer’s and I am not able to see them because my Mom who has always been so kind and caring has turned into a person we do not know and she does not like me so I stay away to make it easier on my Dad, who has gone through the anger stage and is now in the soft spoken and not able to remember to take care of himself. the staff is great where they are at and I have a advocate for them that is taking great care to see that they get out and see the doctors they need but I too know how hard it is since in some ways they are gone from me already. Please know my heart is with you and I am thinking of you.

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  • 21. Mary Ann Scanlon  |  November 22, 2008 at 12:37 pm

    What a wonderful gift you are giving your Mom. Allow everyone to pamper you as you hold her hand on the last steps of her journey home.

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  • 22. Cindy  |  November 22, 2008 at 12:39 pm

    My thoughts and prayers are with you as I can only imagine how difficult it must be for you. I had such a hard time dealing with the deaths of my grandparents that losing a parent must be truly heartbreaking. I will light a candle for Beebe and say a prayer. Take care.

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  • 23. Carmela Schuchert  |  November 22, 2008 at 12:48 pm

    Amy I know what you are going through. We went through the same with our Mom.Our Mom did not know us for the last 6 months of her life. She is in a better place. God be with you and your Mom.

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  • 24. Rae Linda  |  November 22, 2008 at 1:04 pm

    Dear Ami

    I am so glad that you were able to write again. I have been watching for news of Beebe. Having worked in care of the elderly, including death and dying, I am reminded by a patient that I had early in my career. Her name was Margaret and by the time I met her, she was much in the state of your Beebe, non communititve, emaciated and for the most part “already gone”. I was a caregiver who did the things for her that hospice is doing for Beebe. I could tell she had been an attractive lady, but had trouble imagining her life. One day, the nuns found a picture of Margaret at around the age of 20. It was placed on the chest next to her bed. It amazed me that she looked so much like that serene young woman in that old sepia picture. The wrinkles in her face were slack and her skin had a glow about it. She was beautiful! She was again that young woman ready to meet whatever her life (or death) held for her.

    God Bless you and your family,Ami and God take care of Beebe. She raised one terrific daughter!

    I think everyone has their own concept of life and death. Mine is that a little part of Beebe will continue to glow in you and others whose life she was involved in. She will always be a part of who you are.

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  • 25. Janice  |  November 22, 2008 at 1:09 pm

    Ami, my thoughts and prayers are with all of you. Everything works in God’s time and He is always with you. Please take care of yourself and stay well.

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  • 26. Ann Pugh  |  November 22, 2008 at 1:11 pm

    When Mom was at the end of her Journey, the hospice staff told us that the parts of the brain that “hear” are among the last to go. I talked to her, and sang to her. I don’t know if she really could hear, but it was a comfort to me to hold these conversations.

    Remember the good times. Everything is painful now but it does get better.

    Peace

    alp

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  • 27. Jean  |  November 22, 2008 at 1:16 pm

    Dearest Ami,
    You are describing so much of we went through with my brother Dennis in March and April… even though he didn’t have the complications of Alzheimer. The drugs he was on seemed to cause similar effects at times.

    Yes Hospice is a most wonderful and God-given organization. Were we not so stressed by our reduced income (I was laid off in August), I would be gifting them regularly.

    Hugs and more to you,
    Jean

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  • 28. Sequana  |  November 22, 2008 at 1:25 pm

    Ami – I hope I can phrase this in the tender and loving way I mean it. Please don’t be surprised if Bebe slips away when you’re not there. Many times the person is ready to leave and hangs on because someone IS there, no matter how it seems they might not even be aware. When they are alone, they give themselves permission to leave. I hope that makes sense to you.

    I know that you are such a loving person that you might feel bad if you weren’t there at the very last, but it’s really not your own choice, is it? Blessings to you and your family; it’s been such a long road.

    ……annie in chicago

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  • 29. Judy C  |  November 22, 2008 at 1:32 pm

    Your eloquence in defining your understanding of this truly awful time is also your wonderful strength. What a beautiful person you are to share this most personal time with us. Know that all of our love and prayers are winging your way and we are traveling this journey with you.

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  • 30. Marian Mathewson  |  November 22, 2008 at 1:35 pm

    Oh, Ami, my heart breaks for you and everyone dealing with this disease. Please take some comfort in knowing that there are many out here you love you and pray for you and your family.

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  • 31. Susan  |  November 22, 2008 at 1:40 pm

    I know that there are few words that comfort at this point, just know that you and your mother are and will remain in my prayers.

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  • 32. Sally  |  November 22, 2008 at 2:20 pm

    Dear Ami, Reading your blog entries is so moving to me. We lost my mom to Alzheimers 4 years ago, but you words call back the deep feelings we passed through on our way through the disease with her. You have such strength but know my prayers are with you, your mom and your family as you make this journey. Much love and hugs, Sally

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  • 33. Frank Palmer  |  November 22, 2008 at 2:21 pm

    Ami, it has been over 15 years since we went through the same experience with my grandmother but I still can’t imagine how you must be feeling. My thoughts are with you.
    I have put the fundraiser on hold until you are ready. There is no rush. I’ll be here. Please take care of yourself.

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  • 34. Anne  |  November 22, 2008 at 2:24 pm

    Dear Ami,

    Your writing brought tears to my eyes. My MIL died in this way but we were on the other side of the world and couldn’t be there – thanks for including us all. I was adopted by a friend’s family last year when she was passing into the next world – it was difficult but beautiful at the same time. You have been in my prayers for weeks now – do take care of yourself.

    Hugs,
    Anne

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  • 35. Judy Anne Walter  |  November 22, 2008 at 2:24 pm

    Ami, just a note to let you know my loving thoughts are always with you, Beebe, Steve, and Jen.

    Hugs for all of you, Judy

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  • 36. Jeanie Velarde  |  November 22, 2008 at 2:26 pm

    Oh, Ami. I know just what you are going through because I went there myself 5 years ago. Do try to take care of yourself – I know that’s so easy to say, but you don’t need to be sick. Hospice is wonderful – they are all angels. Toward the end, I would hold my Mom’s hand and she would squeeze it. They told me that was just a reflex, that she wasn’t really aware that she was squeezing my hand, but I never believed them. My thoughts and prayers are with you.
    Jeanie

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  • 37. Susan Potts  |  November 22, 2008 at 2:30 pm

    Ami, my heart breaks for you. We met once at a quilt show in Chattanooga, and I enjoy reading your newsletter every month. I have always thought we might be fast friends if we lived near each other – you and I seem to have much in common.

    Last year for three months I walked the same path you are now walking with your mom. Since I have no other lliving family members, her care fell wholly on me. Mother died last year in October, and looking back on that time now, I marvel at my strength and ability to do the things I had to do. I know where my strength and comfort came from, and I am praying that God will provide the same for you, too, in these difficult days.

    Hospice is wonderful, and they will provide support for you and your family as well as loving care for your mom. Even though your focus is on your mom, take care of YOU, too.

    Susan Potts

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  • 38. Kaye Richards  |  November 22, 2008 at 2:40 pm

    Ann take care of yourself; but at present I’m reading a book about the terrior this woman is going through as the world of Alzheimers take control of her life.
    My Mum had Demenchia as she grew older and I will always remember how sad that this brillent woman lost in the fogg of loosing the total function of her mind.
    I pray and think of you often this is a long lonely winding road that you walk with your Mom.
    Kaye

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  • 39. Paula  |  November 22, 2008 at 2:44 pm

    Your description takes me through the final days of my own mother. As difficult as much of that time was, it is now a precious memory with which I would not part. My thoughts are with you and your family.

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  • 40. Dolores  |  November 22, 2008 at 2:49 pm

    Dear Ami,

    My heart goes out to you. I can only imagine. I, too, lost my mom, but not to alzheimers. I think she knew her time was near. She came to visit with my brother and his family. I will never forget her leaving. She wouldn’t look at me but told me she would be back in October. She left that morning and 9:00 and was gone that night at 9:00. I think God each day for each precious moment I spent with her that weekend. We sometimes forget how precious each moment is. Even though she cannot acknowledge you, be sure that she knows you are there. Remember all the good times and the love. May God grant you and yours peace in your heart.

    Dolores

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  • 41. Marcia Middents  |  November 22, 2008 at 2:50 pm

    Ami, you are in the hearts, minds and prayers of all of us. The ones who’ve learned and laughed in one of your classes or seminars, those who’ve learned a new quilt pattern, or a cool technique for applique through one of your books, those who’ve found themselves challenged to take up the cause of raising money for Alzheimer’s, people who’ve visited the Alzheimer’s Piece by Piece exhibit or bought the book and have taken comfort from all the messages, those who’ve found an outlet for their fears or sadness or frustration by making a quilt for the auction, and all the people through the years who’ve had their spirits raised and their day brightened by your newsletter and your wonderful sense of humor. We’re with you now in spirit, and you and your family are in our prayers. God bless you.
    Marcia Middents

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  • 42. Judy Lineberry  |  November 22, 2008 at 3:04 pm

    Ami, I didn’t subscribe to your blog until after I met you at the International Quilt Festival. What a pleasure to see you there but I had no idea that your mother was approaching her final earthly journey.
    Thank you for sharing your inmost thoughts. Now please know that you are loved by so many and are being prayerfully “hugged”.

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  • 43. Debbie  |  November 22, 2008 at 3:07 pm

    It is almost a comfort to know that others final days are like my mother in laws were. With 9 children there was sometimes conflict about how those last days were handled. Seeing your story makes me see that the passage from here to there was the same as if no conflict had happened .Thank you for sharing.

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  • 44. Margo  |  November 22, 2008 at 3:18 pm

    [[[[[[AMI]]]]]] I know that a virtual hug isn’t much, but trust that it is heartfelt. You are a very special lady with a huge group of fans who are praying for you and Beebe. Take one day (hour?) at a time, my friend, and thank you for taking the time to let us know how you are doing. We really do care.

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  • 45. Nancy R Nelson  |  November 22, 2008 at 3:31 pm

    My dear Ami, God and I are by your side. Not many folks can articulate their sadness the way you do. It helps those of us who are walking in your footsteps work through the early stages of this bastard disease.

    Nancy

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  • 46. quiltdivajulie  |  November 22, 2008 at 3:44 pm

    Special blessings to you and your family ~ and prayers of thanks for the angels of hospice. Do what you need to ~ everything else will wait. We love you, Ami!

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  • 47. Mary Kirwin  |  November 22, 2008 at 3:57 pm

    Thanks Ami for taking the time to post this, my gosh you are so eloquent. I’ve been thinking about you and Beebe every day. The Trinity Valley Quilters’ Guild met yesterday and I can’t tell you how many people inquired about you and expressed their concern. And so many of us think you are fabulous for creating the AAQI and allowing us the chance to support this important work of stamping out Alzheimer’s disease. May you and Beebe feel peace and comfort during this sad time.

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  • 48. Humbly  |  November 22, 2008 at 4:01 pm

    Ami,
    You and yours continue to be in my thoughts and prayers constantly. Whenever I open up my e-mail yours is the first I look for…with mixed emotions.
    My mother died in January of this year…causes unrelated to Alzheimers… and what you are enduring mirrors what we tip toed through, although ours was far more condensed. Your days are equal to minutes in comparison, and I sit here wondering which was better. For you with your strength and empathy – yours is appropriate, at the moment seeminly not fair. For me, mine was what the Lord saw was right.
    The trials you are enduring may be there to give all you time to adjust to the final entry in your journal. Beebe is comfortable, and at some level she knows you are there and loves you that much more. Maybe she’s waiting for you to tell her you are ready to let her go….it seemed that that was the case with my mother – my step-father had to climb that step, and when he did, so did she.
    God blesses all of you every moment of each day.
    Hugs and prayers continue your way.
    Mona

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  • 49. Dori Hawks  |  November 22, 2008 at 4:23 pm

    Keep talking to her…you don’t know how much just your voice might soothe her or comfort her even if she does not process the words…..my thoughts are with you….dori hawks

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  • 50. shari  |  November 22, 2008 at 5:02 pm

    Ami, you and your family are on my heart and in my prayers. Even if she can’t say so, it has to be a comfort to your mother to have this time together. When we were new babies, the touches we received from our mothers was an important communication and reassurance. Now you are touching your mother with the same language. I will continue to pray for all of you and I am awestruck by the beautiful way you describe this experience. You are so special. God bless.

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  • 51. HelenMarie  |  November 22, 2008 at 5:05 pm

    My prayer is for you, Ami. Your posts bring tears to my eyes. I, too, am losing my mother…bit by bit…to a personality disorder she’s had her whole life but was diagnosed only 2 years ago.

    My heart is with you, your mom, your family. I hope that you are taking time to treat yourself, your husband and daughjter exceptionally well during this awful, awe-filled time. Give each other big hugs…lots of them.

    May you spend time with those you love who love you back. Especially at Thanksgiving.

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  • 52. Kathy (Sheepshed@aol.com)  |  November 22, 2008 at 5:13 pm

    (((((Ami))))) you might remember I lived in Flint until a few years ago, and we talked several times on the telephone, I am in a wheelchair post polio, and we met at a quilt show in Flint…I. remember I called you a few times to *wake you up for Pro-Chats* on AOL ! My heart goes out to you.. My dear husband and I sat with my mother when she went through the identical things you and your Mom are going through now.. Alzheimers and the ending days… Many hugs and prayers for you and your family Kathy

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  • 53. Alice Luchini  |  November 22, 2008 at 5:42 pm

    Dear Ami:

    I look forward to reading your posts even though they are now filled with the sad news of your mother’s decline. My husband lost 2 dear relatives to this dread disease and so I very much appreciate your efforts on behalf of finding a cure. You are such an example for others with the way you have made your mark on the world. Please take care of yourself while caring for your mother. The world needs you whole and healthy. You make a fantastic contribution to it and I can only imagine how proud your mother would be of you.

    Thank you for all you do.
    Alice

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  • 54. Amanda  |  November 22, 2008 at 6:01 pm

    Ami,

    Holding you and your mom in our thoughts and prayers. May you both be surrounded by healing, golden light, and may her final passing be gentle.

    Remember to eat.

    Big big hugs. Love you,
    Amanda

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  • 55. Karen L.  |  November 22, 2008 at 6:37 pm

    My heart goes out to you and your family. These are hard times for sure but you are doing the right thing. In the end you will not have to feel any regrets for not having given it your best. But do take care of yourself when you can. You will need all the strength you can muster for what you must go through. (My Dad’s last couple of days were spent staring off and up to the right also. Don’t know what that means.) I had left my Dad’s room for a short time and that is when the end came for him. Several people told me that that often happens because they don’t want to leave while a loved one is still with them. I regretted not being there at that particular moment but actually it is all the other moments that are important. God be with you!!!!!

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  • 56. terri bergstrom  |  November 22, 2008 at 7:26 pm

    Dearest Ami,
    I am a nurse. Your Mom does hear you, feel you, and knows that you are present with her. Keep speaking to her, touching her, and being with her… tell her that it is OK to let go of this life and travel to what is promised beyond here… It is so hard to say good-bye, so hard to let go…. you have been and still are, a wonderful, compassionate daughter. May God be with you both at this sorriful time…
    Prayers and hugs,
    terri

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  • 57. Sandy Cook  |  November 22, 2008 at 7:45 pm

    Ami,

    I am thinking of you and praying for you and your Mom.

    Your words bring back my father’s last few days on this earth. We had Hospice at home and so they advised my brother and me, but we took the responsibility. The bathing, turning, trying to ease the pain with meds, and just being there to support my Mother. It seemed endless but there was so much peace at the end and I wouldn’t give up the time we spent with him for anything.

    Stay strong and remember we are all thinking of you.

    Sandy

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  • 58. Brenda  |  November 22, 2008 at 8:33 pm

    Ami
    Please accept my thoughts and prayers for you, Beebe and your family. I can’t begin to know how you feel.

    I do hope the you take care of yourself. Getting sick yourself will do no good to you or Beebe. Let others help you no matter how strong you think you are.

    Please do know that no matter – Beebe loves you even though the physical expression is no longer there. Believe it is in her
    heart.

    Peace and God’s love to you both.

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  • 59. Pam  |  November 22, 2008 at 8:43 pm

    Hugs to you and your family. I’m glad that Mary Stori was able to fill in for one of your obligations. The quilt world is wonderful and supportive.

    Keeping you in my prayers.

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  • 60. Julie in NM  |  November 22, 2008 at 8:45 pm

    My mom also suffers from this horrible disease. I will not bore you or other readers of Mom’s condition, but I do understand what you are dealing with. Please find comfort knowing your quilter friends and others understand. You are doing everything you can right now to help your mom even if she is not responsive to you. Bless you, my dear.

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  • 61. MichelleJ  |  November 22, 2008 at 9:32 pm

    Ami, thank you for sharing your private journey through this pain. I do hope you can feel our supporting, loving arms through all this. Many of us wish we could be with you – failing that, please know that our thought and prayers are with you and your mother right now. I am happy for you both that you can be there now, and until the end. It will give you greater peace – and, I suspect, your mother as well.

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  • 62. Joy  |  November 22, 2008 at 9:40 pm

    My heart goes out to you, I went through this with my mother in 2005. A time to remember what a wonderful mother she was when we were growing up. My prayers are with you.

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  • 63. Sharon Worrell  |  November 22, 2008 at 9:55 pm

    Dear Ami.

    The endurance for this journey comes as surely as the sunrise. You are joined to the sorority of daughters who have stood and ministered when everything said “it doesn’t matter, they don’t know you”.
    As you trudge the final miles, know that a legion of us are behind you, sending a chorous of prayers ahead.

    Love,
    Sharon

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  • 64. Sharon Jack  |  November 22, 2008 at 10:20 pm

    Ami, my thoughts and prayers are with you. Please take care of yourself the best you can. I know durng the last months with my Dad it was not easy but I was very thankful I could care for him and be with him. He did not know me in the end but I am sure he knew I was there and I am sure you Mom knows you are with her too. Know that the thoughts and prayers of the Decatur Quilters Guild are with you also. Love Sharon

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  • 65. Nancy L Oxford  |  November 22, 2008 at 10:38 pm

    Ami. My prayers and thoughts are with you. I lost my mother almost 10 years ago. To say it doesn’t hurt anymore would be a lie. But I have a closeness to my 91 yr old dad that I never have. And I remember so many of the good times with her.

    Thank you for keeping us informed on what’s going on. I know it must be hard. Not only my prayers and thoughts are with you but my love also.

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  • 66. Joan  |  November 22, 2008 at 10:44 pm

    your mother would want to hold you and comfort you and tell you
    that she is grateful for your care. She would tell you that she is safe and she knows that you feel so sad and hopeless. And she wants-insists -that you go on. You have a way to make sure that her life does not go unnoticed. Be safe.

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  • 67. Marie Evans  |  November 22, 2008 at 10:57 pm

    Ami, my thoughts, prayes and love are with you on this journey.We can never understand the time element it takes but are so thankful for the time we have our loved one with us as they prepare for their journey to become an angel in the kingdom of heaven. Thank you for sharing all this with us. Please take care of yourself so you can still be the strong one. Many blessings and hugs, Marie

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  • 68. Karen  |  November 22, 2008 at 11:00 pm

    I worked with an in home hospice care center about 10 years ago as the secretary – the nurses and staff are so well trained and do such great work. When my brother had cancer we put him in a hospice as it would have been next to impossible to care for him in his tiny apartment – the staff were wonderful – if you can and need it talk to the staff about any concerns you may have or if you just need to talk that is what they are there for – I know the counselor that worked for our hospice was a wonderful listener. It sounds like your mother is not suffering and not aware of what is going on and that is a good thing.
    thinking of you – Karen in Arkansas

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  • 69. Arlene  |  November 23, 2008 at 7:51 am

    Ami: My heart goes out to you, but I’m sure you feel that this is a prevledge to be able to be with your Mom in her last days. I know she hears you are talking to her. My prayers are wtih you and your family. A bit hug…Arlene

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  • 70. Betty Rogers  |  November 23, 2008 at 9:38 am

    Ami, my thoughts and those of many other quilters are with you.

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  • 71. debi  |  November 23, 2008 at 10:42 am

    Dear Ami,
    Even at this time, you are ever the educator, teaching us about one of the final passages of life. I don’t know how you do it. I hope you get real comfort from actually putting it all into words and I KNOW you can feel the hugs and love from all, even those of us you’ve never met. My heart is breaking for you. I know you willl forever be grateful for being able to walk along this path with your beloved Mom. Thank you and God bless all of you.
    love you,
    debi

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  • 72. Peg Howard  |  November 23, 2008 at 10:47 am

    Love—-
    PEG

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  • 73. Toddy Sumsky  |  November 23, 2008 at 11:21 am

    My heart breaks for you and yours. God Bless you and keep you safe in his arms,and hold you up.

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  • 74. Audrey  |  November 23, 2008 at 4:25 pm

    Dear Ami and family

    We are all thinking of you and want you to know you have our prayers.

    After reading the article about you in the American Quilter, I know your Mother is so proud of you and your accomplishments even if she can not let you know .

    Take care of yourself. Audrey

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  • 75. Quilting_Librarian  |  November 23, 2008 at 5:47 pm

    I can only imagine how almost impossible this is to deal with. My heart aches thinking of this task that you have in front of you. Please know that you, your Mom and your family are in our thoughts and prayers. God bless you all. Rosemarie

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  • 76. Joanne  |  November 23, 2008 at 6:47 pm

    My prayers are with you, along with the prayers of all of the others who have written messages. I know you are being strong for your Mom but be sure to take good care of yourself, too.
    It is wonderful that you can be there with her during these last days. May your memories of good times in the past comfort you.
    God’s Blessings = Hugs from Joanne.

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  • 77. Denise  |  November 23, 2008 at 8:06 pm

    Ami,
    Thank you for sharing this difficult part of your life with all of us. You and your family and your mom are in my prayers. You have such a gift for expressing what is going through your mind as you walk through your mother’s last days. It touches me every time I read another post from you. What an amazing woman you are! God bless you and keep you – may you feel His presence through this time.

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  • 78. Clodagh Jones  |  November 24, 2008 at 6:50 am

    I have been sent your emails about your mother by a quilter friend of mine in Hobart, Tasmania Australia. Helen sends me the emails as my husband has dementia so I can identify what you must be going through. I am interested in one of the blogs—from terri bergstrom because I too believe that people with dementia, even in the last stages have some insight and respond to touch, smiles and care. My world has changed since Roy got dementia, I am much more tolerant of others, and getting Alzheimer’s disease is not all gloom and doom. As a carer I have gained so much more patience and understanding of others during the later stages of our lives.

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  • 79. Barb  |  November 24, 2008 at 7:09 am

    ((Ami)) Hugs to you. Take the best care of you that you possibly can. Deep down I’m sure your mom knows you’re there and is grateful and feels your love.

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  • 80. Jeanne  |  November 24, 2008 at 10:12 am

    Wishing you peace and tranquility. I love my boys but wish I had a daughter after reading of your devotion. I think your mother senses you are there and it helps her.

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  • 81. Mary Ann  |  November 24, 2008 at 10:26 am

    Ami,

    My heart goes out to you. I know this is a difficult time for you and your family. Please know there are lots of us out here praying for you and giving you strength. Try to remember the good times with your Mom. They will help you deal with this. I’m sure your Mom knows you’re there even if she doesn’t respond. God bless you and your Mom.
    Mary Ann

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  • 82. Jane Woodard  |  November 24, 2008 at 10:32 am

    Ami
    Take care of yourself. My mother had demintia she went through what your mother is going through. I can so identify with your feelings and pain.
    Godd be with you and yours.
    As always you are in my thoughts and prayers.

    Jane Woodard

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  • 83. Karen Wright  |  November 24, 2008 at 2:08 pm

    God is with you and your mother. You are saying all the things that need to be said. She will hear you even if she doesn’t acknowledge it. I will continue to pray for all of you.

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  • 84. LeeAnne  |  November 24, 2008 at 5:30 pm

    Ami,
    We’ve gone through all this with my mother-in-law. Your blog entries bring back so many memories. It’s a tough time in your life, not to mention your mother’s. God bless and keep you and comfort you in all you do.
    LeeAnne

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  • 85. Helen O'B  |  November 24, 2008 at 10:09 pm

    My mom died in July and I am still grieving. It is a tough one…. I am praying for you. God bless!

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  • 86. Sharon  |  November 25, 2008 at 2:10 am

    Ami,
    My heart goes out to you. Please take care of yourself. I know how exhausting it can be. For months I did nothing but drive back and forth to be with Dad, and eat and sleep, and yet I was tired all the time, even though I was basically doing nothing. If you get so run down you get sick, you will be of no use to your mother or daughter or husband either. Even after Dad pretty much shut down, sometimes I wasn’t sure that he wasn’t aware of what was going on around him. And with the other people at the memory care facility – sometimes it made you wonder what was going on in their heads. I think your mom knows you are with her.

    Thank you so much for all you do to fund finding a cure for this horrible disease. Even though there is nothing that can take away your pain, you have a whole world of support out here, when you need someone to talk to.
    Sharon

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  • 87. Julie  |  November 25, 2008 at 10:34 am

    Ami – You and your family are in my thoughts and prayers. Take care of yourselves, as well as your Mom. I agree that you should keep talking to her. No one really knows how much of what is said gets through, but I’m certain some of it must. Julie

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  • 88. Jan  |  November 25, 2008 at 12:38 pm

    Ami,
    Your mother is sensing in a very real way, your presence and your speech. As the disease takes away the ability to understand and generate communication, the person becomes 80% more aware of our body language. We forget how much we are saying to a person with our touch and demeanor. You have evidence of that as you tell her the care that is being provided – when she is being turned and the bed is being moved – and how it is calming to her when she is talked to. I believe her spirit in the room is understanding everything you are conveying to her and that she is watching you and your family with great love. My heart cries with yours.
    Love,
    Jan in Goshen, IN

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  • 89. Joan lichter  |  November 25, 2008 at 3:58 pm

    My thoughts and prayers go out to you and your beloved mother.There is nothing profound to say to you except that along with all your other faithful friends I care what happens to you and your loved ones in allof this. Someday we will be back to the silliness with your dog and and crazy signs but we will never forget this valiant struggle you and your family are going through. God bless and may St. Dymphnia pray for your mother especiallly. She is the patron saint for all such as she is.As ever Joan

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  • 90. Mary Tanzer  |  November 25, 2008 at 7:47 pm

    Ami,
    Continue to be with your mom and believe that her spirit knows you are there and feels your love. My mom died in March – the angels of hospice were involved – and it was as peaceful and as ‘good’ as a passing could be. My heart goes out to you – I feel your pain – I will keep you in my prayers.

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  • 91. Cris  |  November 25, 2008 at 11:08 pm

    My prayer goes up for you and Beebee. This is so hard for you and your family. Been there, done that. Bless your heart in being there for your Mom. May you feel God’s hands on you and yours at this time. Please, take care of yourself when possible.

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  • 92. Marj  |  November 26, 2008 at 12:10 pm

    Dear Ami,

    Please take care of yourself during this time.
    I lost my mom 4 years ago so I know what you are feeling I sat with her right up to the end.I know some how she knew I was with her and it gave her comfort.
    My prayers are with you and your family.
    Hugs
    Marj

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  • 93. Sandra Bogin  |  November 26, 2008 at 5:26 pm

    My Darling Ami,

    I think some part of Bebee, perhaps on some cellular level, “remembers” her life and her loves and she just doesn’t want to go…. I am sending you hugs and strength to bear with this time of limbo for you and your family. My heart is with you and my friend Bebee, may she fly away to a place of endless fabrics, orchids in bloom and peace….

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  • 94. Mrs. Goodneedle  |  November 26, 2008 at 5:27 pm

    God’s blessings on you and your family.

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  • 95. Margie F  |  November 27, 2008 at 12:01 pm

    I received my American Quilter magazine this week. Congrats on “Straight A’s for Ami.” Sooo timely. Love and Prayers.

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  • 96. Glenda in Florida  |  November 28, 2008 at 12:29 pm

    Ami–may God hold and confort you and your family during this process. Thank you for allowing your readers and friends to share it with you.

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  • 97. Judy in Austin  |  November 29, 2008 at 10:55 am

    Thank you, Ami, for continuing to keep us posted.

    We spent our first Thanksgiving without Mama this week; last year she dozed through most of it. We missed her, but celebrated her life by enjoying the company of all our nieces, nephews, cousins, aunts, uncles, grandparents and children.

    Take it one day at a time and treasure what you can. And release what you can’t treasure. Be gentle to yourself. God be with you.

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  • 98. Sally in NY  |  November 30, 2008 at 12:33 pm

    Just checking in. Thinking of you. Wishing you and your mom peaceful times together.

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  • 99. Linda Warner  |  November 30, 2008 at 6:11 pm

    Dear Ami, Steve, and Jenni–
    I am so sorry to hear about Beebe. After I read Steve’s email, I read your blog, Ami, and your words paint a beautiful picture of the love between you and your Mom. Your feelings of constant worry for your Mom are now replaced with the grief of physically losing her. My experience with this transition was that it was actually comforting to know that my Mom and Dad were no longer suffering, they were no longer frightened of leaving their children; the pain of the grief that I was bearing was simply my own. Difficult to explain…
    I am praying for your peace of mind and heart…
    Love to all three of you —
    Linda

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  • 100. Katie in Illinois  |  December 1, 2008 at 7:38 pm

    Dear Ami,

    So saddened to hear of the loss of your mom. I sympathize with you. Both of my parents are gone as is my oldest sister. My dad had Parkinson’s disease and like any illness, it took away the dad I knew and remembered and left this helpless shell of a man who only wanted to be able to do what he was once able to. Your mom now has good company with them in Heaven. My dad’s sense of humor will keep her going and my mom will be her new friend. My sister will be her sidekick!!

    Prayers and blessings to you and your family for having loved this woman who was your mom. Time will help you through your grieving and you need to allow yourself all the time you need. There are no deadlines for you, no magical potion to make it all better.

    Thanks for sharing this part of your life with us.

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  • 101. Barbara Plagge  |  December 1, 2008 at 8:59 pm

    Dear Ami, I feel for you and all the emotions you are going through. It has been a very long and difficult time for all of your family and pray you will fine healing, peace and love through God’s continuing presence.
    Shalom, Barbara

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  • 102. Pat Lovelady  |  December 1, 2008 at 11:20 pm

    Ami, on behalf of the entire Birmingham Quilters Guild, we send our prayers your way. I cannot imagine what you have been through but know how blessed your mom has been because you were there for her. I am praying for some fabulous rainbows to find their way to you. You deserve them.
    Love, Pat Lovelady

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