It’s worth repeating. Every day is a gift. But there are some days more precious than others.
As most of you know I was in Houston last week with the Alzheimer’s Art Quilt Initiative selling quilts to fund Alzheimer’s research. The response was phenomenal; we did better than last year! We don’t as yet know how much better; we’re still counting. More on that at a future date.
My daughter Jennie and I were called home Sunday morning to be with my mother. Her blood pressure was erratic, and she was unresponsive. Steve, Jen, and I have been at her side since then, trying to make her comfortable and preparing for the inevitable. On Monday all medications except those for pain were stopped. On Tuesday hospice told us her body no longer needed food or drink; she was still unresponsive most of the time. “Pleasure food” (that which she would enjoy eating) would be offered, but not forced, when she was alert enough to sit up and take them without choking. She ate very small amounts of apple sauce and drank fortified “milk shakes.”
Yesterday (Thursday) she was alert most of the day. We tempted her with mashed potatoes, apple sauce, orange juice, chocolate, and even a bite or two of brisket, all of which she ate. Towards the end of the day we sat her up in bed and let her feet dangle off the edge. When she waved them around we thought she might be able to sit in her wheelchair. Just before dinner we were able to wheel Beebe around the facility on a “victory lap.” What an amazing day and what a wonderful gift!
Early this morning (Friday) I got a call from Tiffany, one of Beebe’s caregivers. She told me not to look for Beebe in her room. She said Beebe was dressed, in her wheelchair, and waiting to go into the dining room for breakfast! She has been alert and “talkative” all day, and has eaten just about everything put in front of her!
Please forgive the blow-by-blow account, but they are only the highlights. For nearly five days straight my heart rose and fell with her every breath. I don’t know that we are out of the woods yet, or how long she will be with us, but we are taking things one day at a time, so very grateful for each of them.
If you have emailed or called you haven’t heard back from me, and you probably won’t for a few more days at least. I will respond eventually, I promise. Since my newsletter readers, students, and AAQI supporters know about my mother through the Alzheimer’s Art Quilt Initiative, I thought the best way to let you know why I’ve not been available for almost two weeks was to direct you to this blog.
Thank you for your thoughts and prayers, and for your patience. Volunteers will help me by posting your blog comments. They are also updating the November quilt auction running now through the 15th. I will be back online again as soon as I can. For now, I’ll update here when I can.
Ami Simms
Through The Eyes Of A Quilter 
I’ve been holding my breath and praying for you ~ thank you for sharing these details. Having traveled this road already, my heart goes out to you and your family… please know that you are held and loved from afar.
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Ami-You and your family are in my thoughts and prayers. It is so hard to see a parent suffer.
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Hi, Ami. Sending hugs. Holding you up with love from Texas.
Thank you for the work you continue to do. My friend sent me some photographs of you and my quilts at the AAQI booth at Festival. I cherish them.
You’re right; Every day is a gift. Let’s celebrate the present. You are loved.
~Fannie
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I read your account with tears streaming… yes, each moment with her is like a gemstone, a gift. I pray that you will be able to be fully present in these sunset days of your amazing mother. I know that of all my memories of my own Mum, being with her in her last days, before Alzheimer’s closed the book of her life, are some of my most precious recalls.
Get as much rest as you can, eat nutritious bits, and know that everything else, yes even quilts and books and pups will understand being set aside for this most important of reasons. Your mama waited and prepared for your arrival into the world, and now you have the beautiful honour of waiting and preparing for her passing beyond this world. God’s peace be on you all during this sacred time.
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So glad you have the gift of more days. Hope they are good ones!
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(((Ami))) sending hugs and strength to you and your family.
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Ami,
Prayers for no pain and just a peaceful end for the patient AND the family is all you can wish for. I have been there with my family twice within the last two years, and that is what we were able to get out of the Hospice situation. They are wonderful people, and only care for those involved! Love and support from those all around you,
Quiltingly,
Wendy
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I cried as I read your post, some of it more familiar than I care to remember most of the time. My heart is with you.
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Ami, we are all thinking of you and holding you in our thoughts. How fortunate you can be near your mom both for you and for her. I, too, have been down this road and feel the greatest gift was being with my mom in her last days. It’s a natural passage that is so much harder for those of us left behind than for the person we love. We wish you peace…..
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My heart and prayers go with you on this journey with your Mom. I know how painful it can be to watch her disappear. I am traveling a similar path with my Mom, though she is not at end stage yet. I still mourn the loss of a vibrant, loving parent and am saddened to watch her slowly disappearing.
Sending big hugs,
Barbara
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Ami,
As I bagan to read your post it was so familiar. My experience did not end as your did and I am so happy that you have been given the gift of more time with your Mom.
Please don’t think you have to respond to every email individually. I don’t think anyone expects it. Use this precious gift of time where it is most important. With your mom and family.
As Diane said, everything else can wait. But “time waits for no man” (or woman)
You are all in my thoughts and prayers.
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I clearly understand what you are going through..My FIL is suffering with Alzheimer’s and we never know day to day what it will be like…Some days he gets out of bed while other days he’s so weak he won’t even eat..My prayers to you and your family with my hugs surounding you all..Skye
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Ami, you’ve been in my thoughts and prayers this week. Praying you’ll have some more good moments in the coming days. Know your Texas friends love you and are praying for Beebe and your whole family. JoAnne
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I pray every day for those of us who go with God through this difficult time of watching a loved one suffer through Alzheimers.
My husband has good and bad days and mine follow his. You, your mom and your family re all in my prayers with love.
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Dear Ami,
We appreciate your letting us know how it’s going for your family. Yes, the difference between “unresponsive” & responsive is exciting. For now you can sing to your mother, hold her hand, & celebrate the love you share. Please drive safely — & sometimes ask a friend to pick you up, instead.
During this year’s Los Angeles Alzheimer’s Memory Walk, I thought of you & your extraordinary efforts with AAQI. What opportunities & gifts you have given!
Both of my parents have Alzheimer’s, my mother for many years, my father more recently. He still gets excited about politics, family, & conversation. She still enjoys music & dancing & kindness; though she’s getting much too thin now, her light shines quietly through every day. So, exhausted as every caregiver gets, still I am renewed by gratitude, support, & humor. (Have I told you about being a member of the fictional Depends Sisterhood — about shopping for the right ones, at a good price, trying not to waste all our time at it?)
-joyce
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Ami, thanks for the blow-by-blow on this journey your mother and all of you are on. My loving thoughts are with you daily. Judy
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Well, just goes to show ya, we ain’t in charge. What we think and what we plan and what we wait for are all out of our hands. Yesterday was my momma’s 92nd birthday. Of course, she didn’t make it and died on me in January. Still kinda mad at her for that!!! Yesterday I ran a Bulloch Hall Quilt Guild charity workshop. One of our new members is 92. She has a small hearing aid hanging around her neck with ear phones. When you talk to her, she holds the hearing aid up to you. She ordered her daughter to get her a plate for lunch and her daughter in true love and compassion said, “you can get that yourself, Mom.” And Mom did. She and her walker grabbed a sandwich and bottle of water and trotted to the table. It was the best thing I have seen in a while. A true live spirit. Her daughter sat her up in front of a sewing machine, and it was peddle to the metal all afternoon. Did my heart such good. She and her daughter left with an arm load of kits to work on at home, too. I don’t think my Mom would have appreciated it but everyone of the women there knew it was her birthday and smiled and hugged me and sewed for charity out of love and compassion for unknown recipients of the little I Spy quilts. Thank you Ami. Thought about you all day yesterday and you are in m thoughts today. It’s all good. Hard to see while it is happening, but you do what you know is right and it is. I love ya and hope to see you in Roswell, GA in December. Have a big hug for ya!!! xoxox Lisa T
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Ami –
My hopes, prayers & thoughts are with you. I hope you remember to take time for yourself, even 5 minites in a quiet room. Celebrate Mom’s life and the time you have left with her. I’ve been thru it and am now going thru it with my Dad. Every moment is precious, but memories will last forever!
All my understanding and wishes for a little more time for you and Beebe!
– Hilary
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Ami:
Thank you for sharing these precious moments! Sending you and your family HUGS and prayers!
HUGS
Linda
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Ami,
All my thoughts are with you and your family.
Enjoy every good moment and save the memory to
strengthen your spirit later.
No reply necessary…you have enough to contend with.
Robin
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These days are your mother’s gift to you. How lucky you are to share them with her. May they bring you peace.
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Take care of yourself as well as your Mother. Treasure this time with her as well. Stay strong and know that others are praying for both you and your Mom. Hang in there.
With hugs,
Maureen
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So glad to hear your mother is doing better. You are a great inspiration to me as my 95 year old mother is in her 17 year of Alzheimhers. It is a very up and down journey. I’ve always believed there is a reason for everything even though it’s not always easy to see. The great work you are doing ifor Alzheiner’s is a tribute to your Mom. Thanks for all you do
Fran
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Ami,
As with all the others, prayers and thoughts go your way.
Enjoy these days of brightness, as a retired RN I’ve learned that the Good Lord blesses us with them for special reasons.
Share as much as you want with us…..that’s what we are here for and being connected by the wonders of cyber space I know that I personally appreciate your sharing. If I were near maybe I could do more, but at least this is my little bit.
Mona
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It’s such a familiar story to so many of us. I pray for a peaceful journey for both of you.
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Five years ago my little brother died. He was ten years younger than me, and so it was not an expected death.
I was in South Carolina 7 months before, to build a cradle with him for my first grandchild. We talked about reincarnation. ( I am a Buddhist ) We both wondered if it could be real….and he told me, “If I die first, you’ll know it is real if a bald eagle comes and sits in your yard.” I told him that I would come back as a raven and take his truck keys.
The morning after he died, there was a bald eagle in my yard. Needless to say, I was both pleased and grateful that he kept his promise. He stayed with us through the winter, eating rabbits instead of the usual fish that eagles eat. Every year following, he has come back in November and stayed with me until my birthday in February. I have been looking for him every day lately. This morning he returned again for the 5th winter.
Losing someone you love is hard, but seeing them again is uplifting. Life is a journey and death is not the end of it. M
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My thoughts and prayers are with you, Steve and Jennie. Reading your report brought back memories of my own mother. Enjoy every moment you can with Beebe, the other things can wait. Sending you a big cyber hug.
Mary
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The ups and downs are so hard, Ami.
For every precous moment – cherish is – give thanks for it and remember it.
You and yours are in my prayers. Roberta
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What a small gift just to have a small part of Beebe for just a short while, returned to you. My heart is with you, Steve and Jennie, having a loved one slowly leave you is so hard to bear. Know that your many, many friends think of you all. Take care and I trust that God will give you the continued strength that you so need. Bless you and yours, especially Beebe as she continues her journey. Hugs Margaret
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Life is a journey. Many of us have walked similar roads and we send our love to Beebe, you, and all that share this long good-bye. Remember the good times. Hugs.
alp
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Hi Ami, My heart is with you. I have been down this road recently as you know, and I understand what you are going through. Every moment is precious for you and for your mother. I am sending hugs and love and positive energy. My best friend’s mother died 11 years ago today and she and I have been sitting at Starbucks drinking coffee, laughing, sharing memories of our mothers and celebrating their memory. Death is merely a separation. The love and joy lives on in all of us.
Peace,
Deb
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My prayers are with all of you.
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Ami, My heart is with you. I was fortunate to chat with you and Jenny at Houston and love the little quilts I purchased. Vickie said to me as I was off to your booth, “buy a quilt for me.” So as you know I bought several and she had her choice. You may or may not know that she has had too close friends die when she has bee at Quilt Market and this year was one of them. She will give her little quilt to his wife as a rememberance of us. He had suffered with cancer for about two years.
Keep up the good work. You are a special person and thanks for for sharing your life with us.
Al managed “Alsheimer’s camp” quite will. I will use it again maybe for Paducah in the spring.
Nancy
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Oh Ami–I don’t know what to say except I wish I were there to give you a big hug right now.
Betty
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Ami.
This is a very trying time for you and your family. My thoughts and prayers are going out for you. Remember you are being there for your mom at the end (whenever that occurs) as she was for you in the beginning of your life.
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XOXO Amy— my heart goes out for you and your family.
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Ami – I’m doing an eight week grief workshop; the first message to us was that one of the ways to get over a loss is to tell your story. Over and over if necessary. Thank you for sharing your story with us and with allowing us to share ours. May our love surround you, your mom, your husband, and your daughter.
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Know exactly of what you speak. The same thing happened to my Mom – sent for family as they all live far away – this was July 29th – and today she is comfortable and happy in her new home at the nursing home next to her hospital. I, too, just take it one day at a time – some days she knows me and wants to be with me and talk – other days she sleeps through my visits. It was difficult for me to give up being her caregiver – but she can no longer walk – and I’ve been doing it for 11 years steady…even though she has lived with me my entire life of 62 years.
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Prayers for you and your family at this time, Ami. The world can wait. These hours and days are precious.
Love, Jan
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Ami, I have been at my husband’s side all through his Alzheimer’s journey, and he is now unresponsive, laying on his back, eyes closed, not reacting to anything, not moving. He has pneumonia and has started with a hacking cough today.
I pray for peace and comfort for you and your family as you cherish whatever time you have left with your Mom. I am doing the same with my husband. He is a good, gentle, kind soul with a big heart. I miss having him at home at my side and always will.
My best wishes to you and your Mom.
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Dear Ami,
My thoughts are with you and yours at this time. Just one word of advice for you, my friend………. Make sure that you say “Goodbye” to your Mum while she is still with you. It will bring you peace when the actual time comes, I promise you.
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My thoughts and prayers are with you and your mother, Ami. It was just a little over a year ago that I was going through this same thing with my dad and I know what a roller coaster it is. Treasure the good days…those are the ones that will get you both through.
God bless!
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Ami, Nov. 4th would have been mom’s 84th Birthday. But we lost her 8/20/08. Our prayers are with you and your family. I too had tears running down my cheeks when i read your story. Just keep in mind when it is her time. She will remember. Maureen
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What a gift your dear Mother is giving you, sharing her desire to live for another day, and enjoying what she can. Kiss her for all of us.
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My thoughts and prayers are with you.
Hugs
meena
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It is good that you and yours can spend this time with your BeeBee. Have sent up a prayer for all of you. No need to reply to this message.Just know I care! {{{{{{{HUGS}}}}}}}}}
Cris
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Ami,
My thoughts and prayers are with you and your family. Hugs and kisses to your mom.
Michele
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Dearest Ami, thank you so much for sharing your story. It is hard not to cry while reading it and all the other stories shared with you.
But the Lord has promised that He is saving each tear. Enjoy
your time with your Mom. This is a very special gift to you.
Was not able to be with my Mom when she went Home, but my
sister was there and that has always brought me comfort.
My prayers and heart go out to you. Hopefully, we will meet again some day and I can give you a hug again. God Bless you.
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God Bless Beebe! Such a strong spirit…very much like her amazing daughter.
It is so amazing how many people have been down your road and not only survived but thrived. The spirit is so alive in all of your hearts!
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Peace be with you and your family.
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As i took care of my mom who was brain injured, someone told me God only gives you what he thinks you can handle. Somedays i doubted that, but i think its true now. Praying for you… Lorraine
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My thought and prayers today are for you and your family. I’ve been thee too and know what a strain the terrific can be. Please take care of yourself as well.
hugs,
Gisela
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Ami,
My thoughts and prayers are with you and your family during this time. As many have said, we have experienced this with one of our parents/family members. My experience was with my father, 2 years ago this week. Yes it was a roller coaster for me also but it was well worth it for everything my father had done for me while he was able. For our family, though this last time did not end with an extention of time. We had already been given that 5 years earlier. May you feel the love, prayers and strength to get you throught his difficult time. We are all here for you and do not expect you to keep up your emails, etc.. Be with your family!!
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My thoughts are with you. I am another been there person. Not the easiest of times, but the times when we learn most about ourselves.
We are not alone, even though it might feel that way sitting beside the bed of our loved ones, we are not along, there are many of us doing the same thing.
Take strenght from the union of our selves.
glen
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Keeping you all close in my heart and prayers.
debi
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Ami,
It is never easy to see someone you love so dearly slip away. For those of us who deal with Alzheimer’s every day, we know to treasure every moment, every laugh, every smile. The greatest gift we can give back is the gift of love. We cherish who they were; we celebrate our abiity to just love them when they no longer know who we are. We become a comfort, a friend and a constant. The work that those of us do to raise money for research to eradicate this terrbile disease is critical and essential. I will pray for you and your family as you continue this journey with your beloved mother.
Diane
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Prayers and positive thoughts to you all at this difficult time.
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Even though I was losing my husband in little bits and pieces every day, his death 8 days ago still came too soon. What a blessing and gift for you to have a little more time with your Mom! Thank you for sharing with us. Because I am now really alone, the fact that you have shared your story and so many have responded to you, I hope you won’t mind that I take some comfort for myself in the words they’ve shared. We are all connected in this journey. Bless you and your family as we walk it together.
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Dear Ami, Steve & Jen,
Such difficult times you’re going through, but take a deep breath and relish every favorable moment, for those are the special times you will remember.
It was 11 years ago today that I lost my wonderful, dear, sweet and loving mom. I was right here, beside her and I still miss her each and everyday.
Sending you hugs, special thoughts, and strength to carry you through the days ahead.
~Carol
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Dear Ami, I pray every day for all those going along this pathway. I have been there with two aunts and now my mother. I put them in the Lord’s hands , he will take care of them. God Bless Kandy
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Ami, my thoughts and prayers are with you and your family.
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Ami, I just went through what you are doing now. Only you are so lucky to be able to have a little more time with your mom. My mom had 2 bilateral stokes the week of Oct 20th which affected her swallowing. She had quit eating the day before and her caregivers sent her to the hospital. She went into a deep sleep that she never came out of. On the 23rd, the doctor called me with the MRI results, my family sprang into action and by that night I was packed and ready to go to Norfolk, Va. Friday afternoon, I walked into her hospital room and saw her looking just like her mom before she passed away. I sat with her, talked to her, rubbed her arms and hands all afternoon except for the short time my husband and I made arrangements for her to go back to her living arangements with Hospice that evening. My sister flew in from Germany and stayed with mom in her room all night. Saturday I sat with her all day not even leaving to eat. On Friday in the hopital, I kept asking her to open her eyes for me and soon she did. I feel she knew me as I saw more life in them than I had in a long time.I also felt her squeeze my hand for a couple of minutes. I feel she knew I was there and wanted to help me! Sunday morning Oct 26th, mom took her last breath and went to join my father. Mom was diagnosed with Alzheimer;s in 1999. we moved her to assisted living and were so lucky to have found a great place for her. She was loved by all who knew her.Mom was a dignified, gracious lady and it was so hard watching her go down hill. I prayed that she would go in her sleep and that is how she went. The Hospice we used were absolutely fabulous. And the hospice nurse who was with her at the end even sang at her funeral-a beautiful song I had never heard. One line from it was “Heaven is a beautiful place and I wish you were here” Mom was a Navy wife for 30 years and her final tribute at the gravesite was given by my granddaughter-her namesake-. Elizabeth was dressed in her Navy military school dress uniform and she stood at the foot of the casket and gave mother a beautiful salute in honor of her . It was hard on her and she broke down afterwards but I will never forget that picture as long as I live. On mom’s grave plaque, we had the words “Forever a sailor’s love” inscribed.
Ami, this is long but just know I am with you and yours. It hurts right now and will for a long time so just spend all the time you can with your mom. The way I am coping right now is spending most of the day in my sewing room. I am designing and making little quilts for you Someday you will get quite a package. I was fortunate to see the “Alzheimer’s Quilt Initiative” quilts when they were in Belair , Md. in October. the book is great but to see them in person was wonderful. I didn’t get too far around the display before the tears came. I took my purple patch with mother’s name on it and pinned it on one of the display boards as others had also done.
Oh, my youngest daughter, while standing at the coffin before the service, with me, said “mom, just think of her this way – She is dancing the jig in heaven with granddad”.
Be strong if you need be but let the tears fall when you need them to. All will understand.
yours, Cheryl Petro
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Ami…I wish making the Priority Quilts was enough to make everything right with the world. Thank you for your work and encouraging words for all of us who have gone through similar ordeals. With your good works, this terrible disease will find a breakthrough!!.. Keeping you in my thoughts, Jay in Texas
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Hi Ami- Just a note to let you know you and your family are in my prayers and thoughts. Blow by blow is OK. Those of us who have been there live it with you and share your ups and downs; those who are going through it right now can know they are not alone. Those who are fortunate enough to have been spared can get a glimps of the life of those who are going through it and maybe gain a little bit of wisdom on how to help. Peace be with you. With love, Carol
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Ami,
You and your family are in my prayers. Enjoy the time you have with her and put everything else aside. I have been there and have never regreted the “stuff” that I let go to be with my mother in law the last few weeks of her life. In fact, it was actually the most wonderful time of her whole illness. Almost like she wasn’t sick at all (very confusing for my poo father in law, who thought she was getting better). Our Hospice team was wonderful and we were all so prepared. My heart goes out to you all. Keep us all informed when you get a chance.
Big quilty hugs to you all.
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We have you in our thoughts and prayers. Enjoy the moments!
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Thanks for sharing these personal times with us, your internet friends. We care–and pray for peaceful days–for your mom, for you and your family.
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Dear Ami,
This sounds all too familiar. May God bless you with as many sacred moments as He can with you Mom. As with my brother, each will be cherished
Love,
Jean
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Ami~
I just returned from a weekend quilt retreat and read about your trying time with your Mom. My Mom died of Alzheimer’s two years ago, and since I am in the Northwest and she was in Florida, I was unable to be with her as often as I would have liked. What a blessing for your to have a little more time with Beebe. I know you have told her all you want her to know, and she knows your love for her, even if she doesn’t recognize you.
Treasure the time you have left and know that there is a supportive sisterhood at your back.
Lynda Burns
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My thoughts and prayers are with you. Quilty hugs for your heart!
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Ami, I am so sorry you have to go through this with your mom. I’m sure you will be glad (not quite the word I wanted, though) that you are with her as much as you are. I feel good (bittersweet) about the time I spent with my mom during the later stages of Alzheimers. You and your family are in my prayers.
Fondly, Peg
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Ami, I have been there and you have done the same things that I did. Mother was with us for more than a year after. My thoughts and prayers are with you all.
I am anxious to hear about my quilt, but certainly understand the circumstances. How wonderful that you did so well with the sales. Sorry I couldn’t be there to see all the quilts!!
Hang in there and do all that you can, it is hard to lose them.
With love, Melinda
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Dear Ami,
My family and I walked the walk you are now on. We lost Mom March, 2005 and I miss her every day. I know you are making the most of the time you have. This is a precious and sacred time for you and your family. I will treasure always singing mom home as she took her last breath. Please know that we carry you and your family in our hearts and prayers. Please use your time and energy loving and caring for your Mom, as you always have. No reply needed.
With Love, Judith
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Ami,
I’m so sorry to hear about your mother. I know exactly what you are going through. My father passed away from Alzheimers 2 1/2 years ago. I, too, was running to the nursing home and holding my breath.
My thoughts and prayers are with you and your family.
Lynn
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