More Ups and a Down

November 10, 2008 at 10:26 am 54 comments

Beebe continued to do well on Friday and Saturday. Hospice staff who come out to the assisted living facility to check up on her have been amazed at her recovery, one nurse saying in more than a decade of nursing he’d never seen anything like it. She ate well on Friday and Saturday, gaining back more strength. She took several laps around the facility pushing her own wheelchair (with us hanging on to her for dear life). Truly amazing.

She appears to be more talkative, uttering a few more real words amid the gibberish. Some even match up with questions we ask. Jennie sneezed and Beebe said, “God bless you!” When asked if she wanted something to eat she said, “Why the hell not?!” Asking “Hello Beebe, how are you?” gets her to open her eyes, shoot up her eyebrows and say, “I’m fine, how are you?” This many words in a row that atually make sense is not something we have heard since spring. She has even been able to focus her eyes on my face once or twice when I speak to her.

It is hard to say why this is happening. She hasn’t received her pills for almost a week, perhap a side effect from the drugs that stabilize her mood is sluggishness.

She is also extremely restless, she sees things that aren’t there, and random thoughts trigger fear and aggitation. Because of her Alzheimer’s, she has no appreciation of her surroundings. Her newfound strength is now a major concern as she is able to move her body into dangerous situations without knowing it.

Just after midnight yesterday (Sunday) Beebe got out of bed. The person caring for her didn’t change the batteries in the radio receiver they carry for Beebe’s bed alarm. After realizing it wasn’t working,  the care associate just listened for the bedside alarm,  which was turned down so as not to frighten Beebe. Beebe fell and cut her head.

No broken bones that we can tell, but Beebe’s restlessness and aggitation have increased and she only ate very small amounts of food on Sunday. I don’t know if this is due to the fall, sleep deprivation (she didn’t actually sleep until 6am) or even less remnants of the drugs that she used to take in her system.

I’ve not had a chance to get to emails, but I have read your comments to the blog. Thank you so much for your thoughts and prayers. Your comments have given me strength and comfort.

Entry filed under: Mom. Tags: .

Every Day Is A Gift Hospice Care Center

54 Comments Add your own

  • 1. Quiltdivajulie  |  November 10, 2008 at 10:42 am

    The traumatic ups and downs are so much a part of the journey ~ like you’re all trapped on a never-ending roller coaster ride… do what you can to preserve those precious memories… and know that we’re all here for you…

    Like

    Reply
  • 2. Susan  |  November 10, 2008 at 10:58 am

    Your posts about your mother are so hard for me to read as they take me back to when I was going through this same thing with my father. He also had several periods (just as you have described) where he would seem to be “recovering” which left us all, doctors and nurses included, wondering what was going on. All I can tell you is to enjoy every moment of these good days…they are truly a gift from God.

    Like

    Reply
  • 3. Sequana  |  November 10, 2008 at 10:59 am

    Oh, gosh, Ami…..that’s the problem with drugs. They may help one thing and not another. I would bet that her alertness is because of the lack of them.

    I’m thinking of you a lot now. It must be so stressful. Pls take good care of yourself.

    annie in chicago

    Like

    Reply
  • 4. dori hawks  |  November 10, 2008 at 11:30 am

    Thinking of you and Beebe during this stressful time…..

    Like

    Reply
  • 5. Betty Rogers  |  November 10, 2008 at 11:31 am

    Ami, my mother also went through this type of transformation at one point in her Alzheimer’s. It was truly a result of her getting all of the drugs out of her system. But, gradually, they had to be started up again because of the aggitation and paramoia.

    God bless you and your family for taking such good care of your mother!

    Like

    Reply
  • 6. Lin Maine  |  November 10, 2008 at 11:35 am

    I wanted to let you know that your mother and your family are in my prayers.

    no response is necessary. Just know that your sharing is helping others and people are out here keeping good thoughts.

    Like

    Reply
  • 7. Margaret Light  |  November 10, 2008 at 11:41 am

    Ami: What can I say – life is turning what you had become accustomed to upside down. Beebe seems to have definite moments of lucidity, but I guess this is just another cruel aspect of this illness. You take care of yourself, since others are also looking after Beebe. Once more my prayers are with you all.

    Like

    Reply
  • 8. Judy Anne Walter  |  November 10, 2008 at 11:41 am

    Ami, more energy and love thoughts are hurtling their way through cyperspace to you, Beebe, and the rest of your family! Do you see Madison looking puzzled at something in the air? You’ll know they have arrived. I’m with you, Sister.

    Love, Judy

    Like

    Reply
  • 9. debbie kratochvil  |  November 10, 2008 at 11:43 am

    ami….keep the faith…i too have this with my mom…she turned 80 on sunday. as she put it, “it’s another day” don’t know if she knows that or just said it. then she talked about hangers in their basement, did i want any? she has not been to the basement in years…not safe to try the wooden stairs. she told me my dad takes her down there…..i think not. i guess if she is happy in her world, so be it. thank you for all the wonderful work with the quilt project. you are remarkable….bebee is proud of you!!

    Like

    Reply
  • 10. Amanda  |  November 10, 2008 at 11:45 am

    Ami – What a wild ride it is. Wishing Beebe safety, health and happiness, and moments of joy. For you too!!

    Deep breaths.

    Sending love and prayers from the West Coast,
    amanda

    Like

    Reply
  • 11. Deborah  |  November 10, 2008 at 11:47 am

    Ami, sounds so familiar. My mom used to crawl over the bars on the side of her bed – an 83 year old who could barely walk. Finally had to put her in one of those awful beds that are right on the floor. The human brain is an amazing thing sometimes, isn’t it – so much we do not know. Always you are in my thoughts & prayers.

    Like

    Reply
  • 12. Ruth Garrett  |  November 10, 2008 at 12:02 pm

    Sending warm thoughts & prayers for you and all who love your mom.

    Like

    Reply
  • 13. Jane Zlojutro  |  November 10, 2008 at 12:07 pm

    Ami, Jennie and Steve,

    The whole Zlojutro clan has you in our prayers. I’m sure it must have been wonderful to have that glimmer of clarity from Beebe’s responses! Ups and downs are truly life. Enjoy them both. You can only truly be up after you’ve been down.

    Lucy also sends Madison her love.

    God Bless You,
    Jane

    Like

    Reply
  • 14. Lucinda  |  November 10, 2008 at 12:10 pm

    Thoughts and prayers from Dexter. I was so thankful that my mother in law still knew us until the end, so most of our last memories are still in the kind of funny stage. It’s what my 2 kids remember most. Mom died 22 years to the day that Dad did. Pretty amazing.

    Like

    Reply
  • 15. Joanne Coy  |  November 10, 2008 at 12:19 pm

    Ami- My thoughts and prayers are with you. These are such difficult times for you and your family = I am sure your heart is breaking. But just remember that you have done everything that you can to make your mom comfortable and Im sure she knows that you love her very much. Ill add you all to my prayer list. Hug from Joanne in IL.

    Like

    Reply
  • 16. Humbly  |  November 10, 2008 at 12:30 pm

    Prayers and cyber hugs continue you way. The human body is truly a mysterious organism. {That’s why they call it ‘the practice of medicine’…coming from a retired nurse! : = ) }
    It seems her increase in awareness and mobility came about after the medication was stopped…there could be a connection there.
    That’s not for discussion here…here is for warm fuzzies, love, hugs and moral support. God Bless you and all your family and also all the caring people taking care of Beebe.
    You take care of you and spend cuddle time with Madison..he shares your inner pain, but you know that.
    Mona

    Like

    Reply
  • 17. Lynne K. Moorhouse  |  November 10, 2008 at 12:47 pm

    Ami, I rejoyce with you at your mothers progress. I have been there with my mother-in-law and unfortunately my husband and I were not able to be with her her last few days. She was alone and that still bothers me and she passed in 1999. I can hear the joy and sadness in your writing as if I were listening to you speak. Perhaps a visit (if possible) from Madison might help.
    We who have been there are very willing to hear about your mother and her ups and downs but please put your time with her before writing to us. God bless.

    Like

    Reply
  • 18. Debbie  |  November 10, 2008 at 12:48 pm

    Sorry to say that this is part of the long goodbye. We had so many twists and turns those last weeks with my mother in law. So hard

    Keeping up in my prayers…

    Like

    Reply
  • 19. Mary Lou  |  November 10, 2008 at 12:57 pm

    Amazing!! Enjoy this extra time with your Mom.

    Like

    Reply
  • 20. Ilean Smith  |  November 10, 2008 at 12:58 pm

    Our prayers are with your family at this time. I know how hard it is to go through this. Remember we are thinking of you.

    Like

    Reply
  • 21. Ranette Tonsfeldt  |  November 10, 2008 at 1:39 pm

    I’m thinking about you, your mother and your family and praying for all of you.

    Like

    Reply
  • 22. patinwisconsin  |  November 10, 2008 at 1:42 pm

    Hi Ami:
    Please take each day as it is presented to you. Keep up your strength and take good care of yourself. Your Mom just has to be strengthened by your presence and kind words. Maybe more than we know or want to believe. Take care Ami. You’re the greatest!
    Hugs from…patinwisconsin

    Like

    Reply
  • 23. Helen Moyes  |  November 10, 2008 at 1:53 pm

    I’m so sorry to hear about your mom. What a dreadful disease; I hope they find a cure for it. I will wrap her in light.
    Helen Moyes

    Like

    Reply
  • 24. Deb  |  November 10, 2008 at 2:00 pm

    Honey, I am feeling for you in these days when you’re watching every one of Beebe’s actions with an additional layer of “is this it?” I think of you every day and am praying for Beebe – while in a way it’s hard to know *how* to pray for her, in a way it’s also easy… I just want you to be comforted, and wish I could be there to take a little of the burden.
    Deb

    Like

    Reply
  • 25. Ellen  |  November 10, 2008 at 2:04 pm

    My thoughts and prayers are with you.

    My aunt, who is in her mid-nineties, was under the care of hospice. That was last November. Here it is, a year later and she has ‘graduated’ from hospice. She still has her ooomph. This is an amazing grace.

    I wish your mother well and perhaps she, too, will graduate.

    Like

    Reply
  • 26. Ellen  |  November 10, 2008 at 2:06 pm

    My thoughts and prayers are with you.

    My aunt, who is in her mid-nineties, was under the care of hospice. That was last November. Here it is, a year later and she has ‘graduated’ from hospice. She still has her ooomph. This is an amazing grace.

    I wish your mother well and perhaps she, too, will graduate.

    Like

    Reply
  • 27. Terry Chilko  |  November 10, 2008 at 2:53 pm

    Hang in there, kiddo. Take care.
    Love, Terry

    Like

    Reply
  • 28. Karen Wright  |  November 10, 2008 at 3:23 pm

    Hang in here Ami. Enjoy these days and the clarity they do provide. My prayers are with you.

    Like

    Reply
  • 29. Meg Rogers  |  November 10, 2008 at 3:56 pm

    I will continue to keep you and your Mom in my prayers. Don’t forget to take care of YOU.

    Like

    Reply
  • 30. Jeni Overbey  |  November 10, 2008 at 4:52 pm

    Your family is in my prayers. I know Beebe would tell you how much she appreciates you if she could.

    Like

    Reply
  • 31. Bonnie  |  November 10, 2008 at 4:57 pm

    My prayers are with you. Sometimes restarting very small doses of the Alzheimer’s medication can help to stabilize status.
    It is incredibly difficult to try to find a balance between safety and independence.
    God bless you through your struggles.

    Like

    Reply
  • 32. Cindy Cooksey  |  November 10, 2008 at 5:22 pm

    My heart goes out to you and your mother, Ami. I went through hospice with my mother in April of this year, capping many years of slow but steady decline. These days, I try to focus on the happier times we’ve had. But I feel for you, going through this painful process. All you’ve been doing for the cause of Alzheimer’s research is wonderful. You and your familly are in my thoughts and prayers.

    Like

    Reply
  • 33. Kathy  |  November 10, 2008 at 5:30 pm

    Dear Ami and Family,

    We are all rooting for Beebe and shedding tears with each email. And you are all in our thoughts and prayers. There are many virtual hugs out here for the whole family. Please take care.

    Kathy

    Like

    Reply
  • 34. Jill  |  November 10, 2008 at 6:20 pm

    Having ridden a similar roller coaster last year with my mother, I can only say that my heart is breaking for you, and my prayers are with you, your mom, and your whole family. May you gather strength from His love and from each other. These good days will come to be what you remember most. They are certainly treasures to cherish.

    Like

    Reply
  • 35. DPUTiger/amy  |  November 10, 2008 at 9:28 pm

    I have no personal experience with this awful disease, but thank you for your words of explanation to all of us and heartfelt best wishes to you and your family during this trying time. I’m certain that your mother is exceptionally proud of you. She raised a remarkable daughter.

    Like

    Reply
  • 36. Barb Ratliff  |  November 10, 2008 at 10:00 pm

    Ami, Steve, and Jennie:
    How wonderful to get your Mommie and Nonnie back for a short time. Been thinking about you and praying for you all.

    Like

    Reply
  • 37. Susan Arellano  |  November 10, 2008 at 11:28 pm

    Our oldest (30) died in 2000 from a myriad of health problems. Just before his departure, he was very restless. I think it was because he was ready to go, but he wasn’t sure how to get to his new home.

    Rest assured that you will see your Mom again and she will be healthy and happy and will never be sick again.

    Hang in there – I’m praying for you! God will give you all the strength that you need just when you need it.

    Like

    Reply
  • 38. Kathleen  |  November 10, 2008 at 11:42 pm

    Ammi,
    God bless you as you spend these precious days with your Mother. I understand and care.
    Kathleen

    Like

    Reply
  • 39. Phyllis  |  November 11, 2008 at 12:02 am

    I’m sure you are aware of “fidgit quilts” but just in case you aren’t, an 18″ x 18″ square of two fabrics sewn together and embellished with different textures of fabrics, zippers, snaps, ribbons, etc. are wonderful for patients to “play” with using their hands to work out frustrations and produce a calming effect. Wishing the best for you and your family.

    Like

    Reply
  • 40. Sharon  |  November 11, 2008 at 2:53 am

    Oh, dear, dear girl! The “stars in your crown” are shining brightly now…My best warm {{hugs}}…

    Patience and endurance are blessings that increase with the need for them.

    Your example has surely set a standard!

    With love from Nor-Cal…
    p.s. Gold-EE says “Woof, arf” to Madison…

    Like

    Reply
  • 41. Cindy  |  November 11, 2008 at 9:29 am

    I wanted to let you know that Beebe, you and your family are in my thoughts and prayers. Take care.

    Like

    Reply
  • 42. MaryAnn  |  November 11, 2008 at 2:06 pm

    What a wonderful gift you have for sharing your difficult journey. For those of us who have been there you hope we can hold you and your Mom in our hearts and give you all strength through our prayers and thoughts.

    Like

    Reply
  • 43. PegDeyoe  |  November 11, 2008 at 9:08 pm

    Ami, Cyber hugs to you, your mom and the rest of your family. (Quilter’s Hugs, that is). My prayers continue for all of you.

    Fondly, Peg

    Like

    Reply
  • 44. Susan Ward  |  November 12, 2008 at 1:17 am

    Thank you for sharing this journay
    Bless you and your family and most of all your dear mother. As I am sure you have heard this many times this so reminds me of my Mother Betty. Right down to the falling and breaking out of the protective attempts to keep her safe. I am not sure as to why they are not giving her some help with her agitation . I hear and feel your story. I am so sorry.

    My Mother was surrounded with alcohol and those never ending smokes she died in 1991. She had become ill and was in the hospital. Her heart Dr. was giving me an update on her condition and slipped in the question. “how long has your mother be demented” I was shocked that he would say such a thing and came quickly to my mothers defense. I told him she did not have dementia He said yes she does. Who pays her bills, she does I replied.. than trying to explain to me in very cool voice he stated ” For short periods of time they can hide the illnesses. “I walked away . It was very hard, I wanted to change Dr’s my brother and I tried to do something but there was no answer. I think now she is at peace and all the pain is gone. I wish I could have known the real Betty. Before the pain, than alcohol and Alzheimer.

    Hugs
    SusanPI
    My Quilt for Betty
    http://artquiltssusanpi.blogspot.com/search?updated-max=2008-03-04T17%3A20%3A00-08%3A00&max-results=7

    Like

    Reply
  • 45. Evelyn  |  November 12, 2008 at 11:47 am

    Thank you for sharing this wild, heartbreaking roller coaster ride. It brings back so many memories, one of which was dreading to enter my mother’s room (in my home) in the mornings to see if she was still breathing. She did not have alzheimers, but was so very ill. She used to tell me that she didn’t feel any different than she did at 20, but was just trapped in an old, worn out body. I can now see this as I sometimes wonder who that is looking at me from the mirror. After 25 years I still miss my mother, but an very grateful that she was released from the prison of her illness. As many others have said, you are in my prayers also.

    Like

    Reply
  • 46. Suz K  |  November 12, 2008 at 3:27 pm

    reading your latest entries is hitting close to home. My mom was diagnosed with dementia many years ago and was put on an experimental drug to slow down the process – which worked quite well. Lately her memory has been diminishing – both short and long term. She has heart problems and we thought all the various symptoms, including her memory loss, were part of her heart problems. We found out today that it’s all related to her kidneys, which are failing much faster than we were aware. She recently moved into an assisted living facility, which is now our saving grace, and is still able to function day-to-day and knows us. But we see so many things happening with her memory that we suspect her stay in her new place will be short-lived. So we enjoy her company while we can and take each day as a precious gift. My thoughts are with you and your family – and all families going thru such a scary time.

    Like

    Reply
  • 47. Pam  |  November 12, 2008 at 7:30 pm

    Hugs to you. My heart hurts for you. There are no answers. You are in my thoughts and prayers. Bless you for sharing. I can still see Beebe on stage at the museum in Charleston many years ago.

    Like

    Reply
  • 48. Dolores  |  November 13, 2008 at 9:57 am

    Enjoy each and every day you have with her. We sometimes don’t realize how short that time is. May God grant you moments to treasure.

    Like

    Reply
  • 49. Anna Thompson  |  November 13, 2008 at 1:16 pm

    Holding all of you in prayer.

    Like

    Reply
  • 50. Anna SImpson  |  November 13, 2008 at 10:43 pm

    Your post give me strength to face my Dad’s decline. To see the humor and soften the pain of him slipping away. Thank you for for being so open and honest about your mom. You are right each day is a gift. Even though sometimes we are afraid to open it up to see what the day will bring.
    On adifferent note, my dogs are jealous that your’s has a blog spot!

    Like

    Reply
  • 51. Linda Hammontree  |  November 14, 2008 at 10:20 am

    Ami, Ask that she be put in a lower bed. They have beds that are only 4-6″ off of the floor. My mother-in-law went thry the stages that you are going through. She also was put on hospice and was at death’s door but with hospice care she “came back” for about 6 months. Yes, the alarms are nice IF the staff can hear them and aren’t working with someone else. The bed really helped after Alice had her fall getting out of bed.Linda in MO

    Like

    Reply
  • 52. Jane Woodard  |  November 15, 2008 at 12:09 pm

    Ami
    You and your family are in my thoughts and prayers. My mother passed about 10 years ago with Deminita. Reading you blog has brought back the memories of mother’s last years. May God Bless you and yours.

    Jane Woodard

    Like

    Reply
  • 53. Karen L.  |  November 16, 2008 at 1:52 pm

    This is so sad Ami and I am SO sorry. It’s good that you had your Mom moved into a hospice where she will get better care.

    My husband’s Mom is in a nursing home (has been for 6+ years. She does not recognize us although we are happy that she is a patient whom the nurses love (she is so sweet and smiling most of the time.) Well, you know what I mean.

    Keeping you and your family in my thoughts and prayers. May you find comfort in fond memories of her.

    Like

    Reply
  • 54. Virginia Spiegel  |  December 3, 2008 at 9:30 am

    Ami – I know you must receiving thousands of e-mails, so please accept this rather unorthodox method of sending my sincere sympathies to you on the loss of your beloved Mom. You have built a wonderful legacy for her with your AAQI. Warm regards, Virginia

    Like

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Trackback this post  |  Subscribe to the comments via RSS Feed


Back To
AmiSimms.com

Get my Free Newsletter!

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 6,404 other followers

Categories

Links

Quilting Bloggers Logo

Look Who Stopped By

free counters

%d bloggers like this: