I Got That Dreaded Call

I have contemplated this post. I am wavering on sharing too much and possibly not sharing enough. I am conscious of why I should and why I shouldn’t. Right at this moment, sharing is winning the internal battle.

This is a most private situation. One every single family struggling with Alzheimer’s Disease will unfortunately face. I ask for privacy for our children and for our family.

Jim is actively passing. Or transitioning. Or dying. The key word that I have learned from our hospice team: actively.

I have decided to share with you for several reasons. One, your support throughout the past years as I have struggled and grown as a future widow and caregiver has been unwavering, comforting and life changing. Two, I suddenly realized if I don’t inform you what is happening, the next post you read will be announcing Jim has passed away and it will come as a huge shock and might be very disheartening and traumatic. I am sure this post is. It is shocking for me.

Jim was fine four days ago. Well, the term fine is relative. He was as he has been. Walking, eating, mumbling with some coherent words thrown in.

Wednesday morning I received a call from hospice letting me know he was not well. High fever. Blood in his catheter bag. Low blood pressure. Bluish extremities. And he could not be aroused. A good friend came over immediately to the house to comfort me and assess the situation. Another good friend met me at his facility and sat with me as I listened to all of the medical terms and information that seemed to be important but somehow I was barely able to process what I was hearing.

Jim’s doctor came. He gave his best guess as 3- 5 days left. I was in shock. How was this happening now?  We have long known this day was coming, but it has come with a suddenness that has left me ill prepared. He hasn’t gone through several stages…soft foods, pureed foods, bed ridden, wheel chair, walker, falling….there is supposed to be more time. There is supposed to be more warning.

Yet, here we are. At the end. Unless a miracle happens. Unless his youth and strength somehow prevail. That is what slips into my mind. Maybe this isn’t it. Even though hospice does this for a living. Even though his doctor concurred. Maybe this isn’t really it.

We are not sure what has happened. He fell Tuesday, but didn’t seem to have any issues from the fall. He was checked over twice. He has had so many different issues with his catheter and UTI’s, there is a possibility of sepsis. Or, it could be something we just don’t know.

What I do know is my kids are heartbroken. I do know I thought I was ready and prepared. I thought I would be clear headed and would know what to do, but I was wrong. I do know that the love and support and guidance we have received year after year is stronger than ever and making a difference that I am unable to explain at this juncture of the game. I have been overwhelmed and I am thankful, humbled and indebted.

I am also exhausted. I don’t know how sitting around a room all day can make you so tired, but it most certainly does. Maybe the lack of sleep is also playing a role….

The first day, Jim was unresponsive. The second day, Jim showed some recognition, ate some ice and rolled on his side. The third day he ate ice cream, said some words, mumbled and gave me a hug. Today he hallucinated, tried several times unsuccessfully to get up, ate some applesauce and said a few more words. Through it all he is in pain if he moves his left arm, if we try to sit him up or if he moves a certain way. He also has quite a bit of myoclonus (jerking). There are times his coloring seems to be improving. There are times he seems to be so much better than his initial state, yet in the end, he usually ends up with a blank stare and confused look on his face. He has smiled. He has told me he loves me. He has hugged the kids. He has not had anything really to eat or drink since Tuesday evening. (not enough for the medical community to count as intake). He has been up out of his bed twice since Wednesday. He has looked me in the eyes and with a tear falling down his cheek, reached out his weak hand to touch my face.

This is excruciatingly painful to witness. I know many of you will be very upset by my words. I know you care deeply for our family. I know you want to do something. Thank you.

I had started a post that was going to include a video of Jim from just this past Sunday, just a couple of days before this started. I am scratching that post. But I am going to share the video because I want to show where he was. I want people to see what Alzheimer’s Disease does to a wonderful human being. I want to break the misconception that Alzheimer’s Disease is just old people forgetting someone’s name or getting lost. I want to erase the stereotypical patient idea. I want the stigma that follows a diagnosis to be a thing of the past.

Again, thank you for your concern, your prayers, your support, your love and for continuing to help our family during a most difficult and painful time.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (64)

64 Responses to “I Got That Dreaded Call”

  1. Tamie says:

    Karen,
    There are no words that come to me, but prayer for you, the kids and for Jim. You have shown immeasurable love and character in sharing the longest goodbye and will have the strength to carry on. May God bless you and bring peace to you all.

  2. Diane Boyle says:

    Gods Blessings to you for strength, for peace and for the most wonderful friendship you had to carry you through. Angels await Jim, to carry him to peace.

  3. Julee says:

    No words- ??

  4. Darcie Brenner says:

    I pray for strength and peace for you and your family as you go through this difficult time. My husband skipped the last couple stages of the disease also came down with a fever and could not get rid of it the body just shut down. As much as you think that you are prepared for what is coming there really is no preparation for it when it actually happens. My mind accepted it but it was hard for the heart to accept it. Embrace comfort from your family and friends and please keep sharing and spreading the word of how this awful disease can also affect younger people

  5. Lori LoBue says:

    Sending my thoughts & prayers your way. May Jim have an easy passing. God bless you and your family.

  6. Denise Pons says:

    You know I am here…praying as I always have been for you, Bradley and Frankie. Prayers especially for his hospice caregivers to help you with the multitude of emotions you are feeling…and for Jim as he makes this journey to a place of peace.

  7. Catherine Nugent says:

    Thank you! so much for having the grace to warn “us”… Dear God, bless this woman. I have been bracing myself for an end to this journey. Now, my heart goes out to you and in particular Jim’s children, in this time of “transition”. I am hollering from the other side of the world: BE COMFORTED! WE AGONISE WITH YOU. And again, thank you. Love from Australia

  8. Kate Pennington says:

    Thank you for sharing with us, Karen, and for taking the time while you are grieving and struggling to write a blog post for us. You and your family are in my thoughts and prayers. Thank you for being a voice for those who cannot speak up.

  9. Diane Payne says:

    My thoughts and prayers are with you and your children. God bless you!??

  10. Cynthia says:

    I’m so sorry and my heart goes out to you and your children. Thank you for sharing your journey with those of us who are on the same road.

  11. Joann Escobedo says:

    I am crying as I read this and write. It is never easy or expected. I know, I lost my Jacob back in September at 54 from the same thing as your wonderful Jim. It is heartbreaking. You will hear all of the, “he is at peace and not suffering anymore”, but you never forget how even in this state he was still with you. I think about Jake up every day and cry almost as much I think about Jacob every day and cry almost as much. His son who is 19 lives with me so having him around and my daughter are a big help in my healing. I send you all my love and prayers and strength. I wish only better days for you and your children to come in the future and always keep the wonderful memories that you made with Jim. If you ever need someone to talk to or support please feel free to email me . I will keep you in my prayers at this difficult time, you, Jim and children . G-d bless you all. JoAnn

  12. Phil Nicholson says:

    Karen and kids;

    My thoughts and prayers for all of you and Jim.

  13. Patricia Hatch says:

    Hugs & Prayers to you & the kids. Please remember that you have a large group of supporters lifting you up-some known, some not-but there nevertheless. Thank you for sharing this difficult post.

  14. Connie says:

    Karen, my Glenn passed away in Septembet and it is all still very fresh. We to were told “glenn might not survive the weekend”. He ended up last 16 more days without food or liquids. I think it was because of his young body. I thought not seeing him suffer anymore, itwould be a big relief. While I grieved many times as the disease progresses, I was surprised how much I grieved after. Be kind to yourself. My thoughts and prayers are with you and your family. MSG or call me anytime.

  15. Sandy says:

    My heart breaks for you and your kids as you near the end of Jim’s journey. Thoughts and prayers are with you! I too am dreading when that call comes about my mom. It’s gonna suck.

  16. cathy says:

    My heart breaks for you. We are going through the same thing with my dad. I cried as I read your post. We do not know how much time we have left with him. Cherish each precious day. Prayers for you & your family.

  17. Marchelle says:

    Karen my prayers of comfort and strength are with you and your family. You are one strong woman and I pray God continues to bless you for your faithfulness. ??❤️

  18. Jan Blecha says:

    Prayers surround you as you prepare to complete his journey to his eternal home.

  19. Kerry Daniels says:

    I’m so sorry Karen. So sorry for your pain. I know when we had Hospice it was less than 24 hours for my dad. I hate the word “Hospice”. I didn’t want to say it. No disrespect to them. They are really a great organization. I just hated the word. I will pray for you. And the kids.

  20. Krista Bradshaw says:

    Karen…I am not sure what to say…I am praying for you all. Hugs to you. Let your friends surround you now.

  21. Phyllis Gallagher says:

    Oh Karen, I am so sorry. My heart breaks for you and your children. You will be in my prayers and thoughts.

  22. Glenda says:

    Karen, my heart goes out to you and your family. Scott and I hold you in the light as Jim makes this transition.
    God’s peace.

  23. Lorrie says:

    I am sending hugs and prayers during this difficult time.We all love you.

  24. Cynthia says:

    Thank you for sharing your painful journey as we do not feel as alone. My mother-in-law is rapidly heading in that direction as well. You have given so many people comfort; I hope that you feel the support of friends, family and even us strangers. Your honesty helps us all. Wishing you peace and strength when you need it most.

  25. John says:

    My thoughts and prayers for you and your family. I took several videos of my wife through the progress of this disease but have never shared them. Thank you for having the courage to share Jim’s. It gives everyone a glimpse of this disease and brings to light that it affects many who are not aged. God bless.

  26. Linda says:

    Dear Karen, Jim, and children,
    My heart breaks for each of you. Life can be so unfair. You are in my thoughts and prayers. (Heather’s mom – Linda)

  27. I have read many of your posts over the years. At this moment, I send prayers for peace and gentle passage. Even when I knew my mom would die soon after years of Alzheimer’s, it was a shock when she died “suddenly.” And the same was true when my husband died of cancer. I know you are exhausted. Jim is likely exhausted, too. May there be the least suffering possible for Jim, you, and your family. May you all be surrounded by Light.

  28. Kim says:

    I lost my dad to this horrible disease 2 years ago this past Christmas. It is hard to watch someone you love deteriate with this disease. We were able to be with him thru his passing. I will be praying for you all.

  29. martina says:

    Karen, I list your entire family up in prayer as you walk through the most difficult season

  30. Jeri says:

    It’s hard to find the words. Having lost my husband just a few months ago of from this horrible disease I can surely feel your pain. I hurt now for you Karen. Tears flowed as I read this post, though it wasn’t a shock, it brought to the forefront all I felt during the last few weeks of Dwights life. And knowing what and your children have to experience now .. I am just so sorry. Truly sorry. Not a day goes by that I don’t think of you, and somehow I don’t think that will ever change. We’ve never met, yet there is a bond. God Bless you and your children.

  31. Lisa says:

    I am so sad for you and your family. You are in my thoughts and prayers. This disease is absolutely heartbreaking

  32. Michelle B says:

    Thinking of you and your family. ?

  33. Sending love and light <3

  34. Diane Chadwick says:

    My heart breaks for you & the children…..the end is hard…even though you knew it was coming. My mom is in the final stages and as we say she is just lingering. My prayer for my mom is a quick & easy passing. Her husband will be there as she takes her first breath in heaven…healed and in her new body. I know I will see her again. Love and hugs for the next few days.

  35. Brita Mizelle says:

    Prayers for you and your young family today. I totally understand all this, as I will be leaving for the memory unit where my husband is residing. Each visit is so hard and yet I will miss each and everyone when he is gone. Blessing to all of you.

  36. Jana says:

    Karen, please know that you, Jim and the children are in my thoughts today and will continue to be so. I hope the words of friends bring you strength to sustain you. You and Jim have been so couragous and I have such compassion and respect for you both. Cyber hugs.

  37. Pamela says:

    My thoughts and prayers are with you and your family. You are never ready for this finality, that last breath that will separate for ever, even when you know this inhumane and dreadful suffering will be eased, it still hurts. Be gentle with yourself, hold your children close and carry on your courageous fight against this heartless disease. You are a true hero.

  38. Christine says:

    My mom went fast. Fine one day and gone by the weekend. The shock of the end is the hardest. My prayers for you and especially your children. Blessed Easter to you all.

  39. Jeanne Sapia says:

    I feel as if prayers are not called for right now. Why dear God? I have known and loved Jimmy his whole life and this is not the Jimmy I know and love. I am heartbroken and so sad. I will be glad his and your family’s suffering will soon be over. but I will pray that his passing over will be smooth. Always remember that he will always be with you and your children. he loves you with all his heart and soul and nothing can ever change that. you were so lucky to have him, as I was lucky to have known him. Please tell Jimmy Jeanne Riggsby loves him. Thanks.

  40. Bridget says:

    Karen, I have been following your blog for a couple of years and all your posts have bern so relevant to my journey as my husband is a couple of steps behind your Jim. Like you, my family decided placement would be the best option a couple of months ago. This decision was so hard and bittersweet but he is receiving the best of care. My heart hurts for your family with Jim’s sudden downward turn but as you know living this journey especially with the early onset type is a day to day and moment to moment experience. Please email me if you need someone to talk to. You have been so brave to share your truthful blog. My God be with you and your family.

  41. Barbara Shefelton says:

    You are loved. Your children are loved. Jim is loved. We will all continue to pray and be at the ready for anything we can do. Jim is safe and cared for and ready to be released

  42. Michael Bracewell says:

    Bless Jim, you, and your family. So so sad. Mike Bracewell – Santa Rosa California

  43. Cathie says:

    dear Karen, thank you for sharing this journey with us and now for the Final Chapter it is so important as you said, to let people know exactly what This disease causes.my husband’s last stage of the illness went very fast also and even though you are trying to be prepared i
    t is never easy to watch. But in some way I feel that God has known that they have had enough suffering and is taking them quickly for peace and happiness above.

  44. Patricia Farnham says:

    Prayers for your strength as you continue your journey. I know this is a journey I will be one day be following. My husband has had this wretched disease for over 5 years now. He is recovering from a fall and we returned from an Easter dinner with daughter and family. He still can smile occasionally and has a twinkle in his eye at times. I hope I can stay strong as he continues to live at home. Peace and love.

  45. Patrick Waldron says:

    My thoughts and prayers with you and your family! Words cant express how sorry I am! Bless you for your strength and dedication through the unimaginable journey. God bless!

  46. May the Lord be with you and your family at this stage of the journey. May His face shine upon Jim and give him peace!

  47. Janet Urgo says:

    You are in my thought and prayers! I will pray for you and the kids to have the strength to handle Jims passing.

  48. JOAN says:

    So sad to read this news ,thank you for sharing.Your blog has given me strength when I was reeling from my husbands diagnosis 3 years ago and didn’t know were to turn.God bless you and your children as you deal with Jim’s final days.So sad!!

  49. Anne says:

    Karen, my heart goes out to you and your family. When I was in a similar place people carried me through the worst of it. I am praying for you, the children and wonderful Jim. He has been blessed to have you.

  50. William Kilduff says:

    Karen, I’m praying for Jim, you and your family. That was a tough read. Even though Mike didn’t suffer from the same as Jim, It brought back memories of him over his last days. Jim knows you all love him with every ounce of your soul, and you know the same love from him. God Bless you all.

  51. Gretchen J. Robinson says:

    As I have watched this unfold over the last few years, there is one thing that stands out without a shadow of a doubt and that one thing is love. You have shown unmeasurable amounts of love for your husband and your children and even here at the end, his love for you is obvious. Thank you for your post, my thoughts are with you and Jim. Just know even in times of great sorrow, there is joy. Jim will find peace, grace and mercy with God when his time is at and end. We all love you.

  52. Ann says:

    Karen, I am without words. I can’t believe how quickly … I don’t think any of us were expecting this post – not for a very long time. My heart is breaking for you, because I remember those last days with my mom and how hard they were. But this is different. Jim is your husband. You are younger than me and Jim is just a few years older than I am. Your kids are… still kids. I can’t imagine what you must be going through. Know that you are in my prayers. I wish I could wave a magic wand and erase the pain for your beautiful family.

  53. Anita Trenner says:

    I don’t think I’ve ever posted on this page, but I’ve been reading your blog. I lost my father to this horrible monster that you’re now having to look squarely in the face. I don’t know what to say, but I’ll tell you this: you spoke of lack of sleep, and how are you going to get through this. Sleep is your absolutely greatest ally. You’ll be surprised at just how exhausted you have been. I advise that once your handsome husband has been freed from the grasp of Alzheimer’s, you get all the sleep you can muster. We sort out an absolutely amazing amount of stuff when we sleep, making it essential, and your best friend. Sleep well and often. My heart is with you. (I’m a friend of Ann Napoletan’s)

  54. Chris says:

    Speechless, but praying for your family. Like you, I’m expecting the digression as this disease continues. And I expect is quicker because of how young my husband is, but I would need a LOT of support if I received a phone call next week telling me my husband was at the end. I’m expecting all of the steps, thickening of drinks, soft foods, walker/wheelchair, etc. But to jump all of those steps at once…wow! We are here. Continued prayers for your family. May you all find peace…

  55. Janice says:

    Nothing that I can offer but feel the need to reach out to let you know that prayers are being said for you, Jim and your children during these unbelievably sad yet sacred moments.

  56. Carolyn Money says:

    Karen you and your family are in my thoughts and prayers.

  57. Lois keller says:

    The miracle is with you now, that you a present as a family with love for this great guy. Thank you for sharing. I will share too, because your story is important, honest and will lead to a cure. Good luck to you and your boys and your future. With love and understanding , Lois

  58. Sabrina cusson says:

    I lost my meme two months ago. She was my other half. My best friend. She lived in a hole for six years. Alzheimer’s kicked in a year before she moved into the home. It was a very slow progression. Two weeks before she passed, I got the phone call. Two weeks left they said. She wouldn’t eat, drink or take any medications. Her condition worsened. Two weeks came. Her fever spiked to 102. They didn’t think she’d make it through the night. But she did. I went to visit her the next day in the morning before work. I hugged her and cried. I told her it’s okay. If she needed to go she could, I’d be okay. I kissed her and told her I’d be back after work. Two hours into work..I got that call. The call that she was gone. I thought i prepared my self years ago..but nothing can prepare you for that..Alzheimer’s is the worst. I know your pain. Hang in there. Stay strong. It’s not easy. But try and remember how he was before the altzheimers. It’s hard. You’ll make it through. You obviously have a great support system. Head high and remind your children of how he was before altzheniers started making him slip away. God bless.

  59. Karen, I hope you will look at this time of departure as a gift for Jim. In a crazy way a gift for you too. Grief is not a season it is constant. I found myself in the anger grief stage last week. It has been 14 months. My sequel to my book, “I’ll Be Seeing You” will be out in the fall. ” Steel Love”, Alzheimer’s decline. Nothing is the same and never will be. Put yourself in God’s lap and cry. Joe was in this foxhole for 12 years. Jim’s pain may be a blood clot. That took Joe very painful. Hugs-prayers-love.

  60. Kala Cota says:

    When Heaven Calls Me Home

    When it’s my time to go, please don’t grieve for me
    I’m going to a place that has all my memories
    They are stored for me in heaven beyond those pearly gates
    You know, it’s been a struggle and I can hardly wait

    To have all this confusion wiped away in just a blink
    I’ll be myself again with the ability to think
    As I gaze down upon you, I’ll know who you are
    With my memories restored there beyond the stars

    I’ll smile to myself as I recall each name and face
    My last few years on earth we’re a trial in faith and grace
    But the memories I’ll recall will be from years before
    The best years of my life, but I’m not keeping score

    Wipe away your tears, please don’t cry for me
    We both know, in heaven, is where I long to be
    If I don’t have my memories and can’t make some more with you
    Then my time on this earth, needs to be through.

    I’ll be waiting at the gate, but you just take your time
    I’ll be healthy, whole and happy. I’ll be feeling fine
    Get on with your life and make it everything that’s good
    I’ll be watching over you from my heavenly neighborhood

    Thank you for your care and your devoted heart
    There is nothing on this earth that can keep us apart
    When you feel a soft breeze, it’ll be me just checking in
    Our journey isn’t over, someday, I’ll see you once again.

    Written by: Kala Cota

    My mother has Alzheimer’s…thinking of you and wishing you peace in your heart and mind.

  61. susan Maroulis says:

    I am so sorry you and your family are going through this. Your sharing is so important- how else could we know that this can be so unexpected? I have Lewy Body Dementia & your experience reminds me to treasure everyday. I hope you & your family can find peace. Sending prayers.

  62. LaDonna Snow says:

    I am so sorry. I remember going thru this period of time with my Mom. My thoughts and prayers are with you and your family. Praying for peace.

  63. PeggyKincade says:

    Thinking of you and your children and Jim.Karen, you have done amazing in share this blog. My Mom passed in Jan 2015. She had dementia too. And so did my Dad. Praying for you.

  64. Andrea says:

    My 51 year husband passed from Early Onset in November 2015. There is no right or wrong way to grieve. Pray for God to strengthen you and give you wisdom in helping your children through this. Help your children to see God’s many blessings during this painful journey. Remind them that the end of our physical life is the beginning of a new better life with our Creator and they will eventually have an eternity with Jim. I am praying for all of you.

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