Update

Screen Shot 2016-03-29 at 11.39.47 AMJim is still with us. I say that statement with a very loose context.

Jim is resting. Jim is sleeping. Jim is….Jim is….technically alive.

Waiting to die. The waiting for him to die takes a toll both mentally and physically. And it totally SUCKS!!

Sitting, watching, holding his hand, rubbing his hair. Watching for the slightest change in breathing. Seeing a slight movement of his lips or a flutter of his eyes and wondering what it means? Is he trying to tell us something? Is he in pain? Does he want something? I’m sure he wants a huge glass of water and a very large meal.

His hands and feet were cold. Yesterday they were warm. His coloring goes pale, goes yellow, then he is pink with warmth. Then he is cold and a grayish/bluish tint.

A friend came and played guitar and sang for him. We could tell he heard her. He moved his mouth. His eyebrows raised. His demeanor changed. As it does each time his children enter his room. He knows they are there. He seems to long to reach out and hug them again. His mouth hints at a smile. His beautiful blue eyes struggling to see each of their heartbroken faces.

His legs jerk. He grimaces in pain if his left arm is moved or we try to sit him up. He is getting stiff.

This is torture. For us all. Our friends. Us. And for Jim. He may be out of it, he may be on drugs, but I know. I know. The man I married and have loved and known for many years, did not want to linger. He did not want us sitting around watching his demise. He lived a life full of life and it doesn’t seem fair this cruel disease is robbing him of the death he wanted.

You hear the statement “We don’t treat our animals this way, we shouldn’t treat our loved ones this way.” I never really had much of a thought one way or the other. It was always someone else’s fight. I can tell you, watching him struggle to open his eyes half way, keeping them there, trying to will them to let him see his children one last time….struggling to breath, dying of thirst (literally), starving to death (literally), coughing up the slightest liquid we try to give him……….this is inhumane. Maybe God doesn’t want us to kill, but he allowed us the knowledge of how to take a life with out pain or malice for a reason. Sometimes, we should be smart enough to use it.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (46)

46 Responses to “Update”

  1. Connie says:

    This is all still fresh in my mind. I did ask family and friends to send a voice message telling him goodbye if they were unable to physically see him. Sometimes they linger for someone. I was not with Glenn we he passed and hospice said sometimes they wait when they are alone. Praying hard for you and your kids.

    • Jen says:

      The final goodbye is torture….we waited in exhaustion with Great Grandma for days…and she went when she was alone. In His time. God Bless all those who are waiting.

  2. Joann Escobedo says:

    Sometimes they don’t want you there when they pass. They don’t want you to see them, and the moment you step away, they go. It is so hard either way. All my prayers and thoughts are with you. I feel like I am reliving it again and crying all over again when I read about you, Jim and the kids. I am there for you, if only is spirit.

  3. Heather says:

    I have been following your story silently for a while, My grandmother died last august from Alzheimers. She was in hospice at the end and it was a cruel 7 day dying process that me and my family sat and watched. She waited until my aunt (her daughter) left her for only 15 minutes, to let go and move on. Sometimes they hold on until we leave… I wish you the best on this journey its a long painful one.

  4. So very sorry that you and your children have to go through this part, the ending of a life. I wish for God to reach out his hand and let Jim get his final peace. Karen I wish that you and the Garner Foundation will help the Right to Die cause in the future, yes our dogs are treated more humanly when the end is near. We should be able to do as much for our loved ones.

  5. Sue Wood says:

    I so agree with you. My father died peacefully and kindly over one day, but my mother died as Jim over 15 days. Why death has to be so slow when it is not beautiful and kind I don’t know. Many times I thought of ending my mother’s suffering myself. The truth was, when she was alone (except for a nurse) she slipped away without anyone there. Was she waiting for us to let her go? Maybe. The guilt is still there, but I do think we held on to her longer than we should, just by being there so much, did she know we were there? I think so, would I do it again? Probably, because not to be there feels wrong too. Blessings to you all, and a peaceful sleep for Jim. Love and prayers, Sue

  6. Jill says:

    I think that God didn’t expect the technology we have. You can prolong life if you want. It does nothing for the patient.
    The hospital my father died in left us alone in a wing were we had 2 nurses – no one else. He was given meds each time he moved because their practice was to treat it as pain.
    For my mom, she was at home on hospice and I did the same for her and my aunt. Dad passed in 8 hours and mom in 5 days (but the signs were there sooner).
    I give you all my strength and energy to your family during this process. God Speed Jim.

  7. Kate Pennington says:

    Words just don’t feel adequate right now. I am so sorry you are all going through this painful process. I am holding you in my thoughts and prayers. May Jim find peace and an end to his suffering soon. And may you find the strength and support you will need in the days and weeks to come. I wish I could do more to help.

  8. Samantha Sweigert says:

    My heart breaks for you. We said goodbye to my 57 year old father a little over a year ago after he was diagnosed with Lewy Body Dementia a few years prior, in addition to stage 4 prostate cancer. He experienced many of the same symptoms you have described and lingered for weeks, and, although this post was difficult to read as it reminded me of things I have mostly successfully blocked out, it convinced me, again, that we owe it to those who must leave our presence this way to tell it like it is. This kind of death is no movie; this kind of death is hard work for all involved-the family and the person transitioning. This kind of death deserves attention if it can provide our society with a way forward, and it must.

    Please know, and please let your children know, that as time goes on, you will remember his smile and his laugh more readily than you will remember the blank stares and quick seizures. You will remember how he held your hand when you were younger and he was stronger more readily than you will remember those hands being cold. And you will feel his presence even after he is gone, most often when you didn’t even know you needed to. Sending so many warm thoughts and prayers of peace for you and your kids. Sending prayers of a loving journey home for Jim.

    Thank you for being honest and sharing this.

  9. Diane Chawick says:

    I know your pain….my dad died in hospice care last June. He was there 7 days….the last 3 not eating or drinking or opening his eyes. My mom is in the last stages of AD and we pray for a quick easy passing. The end is near and soon Jim will be in heaven, no more pain and he will be whole again….just like the JIm you knew and loved before this dreaded disease took him away. Hugs and love to you and the family.

  10. Rita Hatke says:

    Love & prayers

  11. Martina says:

    Prayers for you and your children as you endure a heart wrenching scenario. Prayers for Jim as he waits to meet our Lord in person.

  12. Jan says:

    I’m so sorry! Your words brought back a ton of memories. You said what my heart felt when my mom died from Alzheimers. I remember saying to my mom, “i wish I could just put this pillow over your head to take away your suffering.” No one can judge unless you’ve been there. I’m sending prayers, special delivery to you today.

  13. Marye says:

    Sending love and warmth to you as you endure this part of a very difficult and unbearable journey. My heart weeps with your heart and I pray that you find some comfort knowing that you have endured because of your love for Jim and now, here at the end, you, dear Karen, have loved well.

  14. Beverly says:

    You are in my thoughts and prayers. My mom had Alzheimers and had no quality of life in her last 3 years. That was hard enough. The last 3 weeks were the worst to see her dying. My siblings took 24 hour care and I was with them as much as I could. It was hard but I wouldn’t had it any other way.

    Your blog has helped so many,

  15. Mavis says:

    Karen, I have followed your post about you and Jims life. We also are Retired Military of 30 years. and Jack my husband is in the 7th stage of Alzheimer. I have him at home. We have tried for over 2 years to get any funding from the military as I know eventually he will need more help. I really feel for you in so many ways differnt from me, as all my Children are Adults and families of their own, but with 2 small children as you have there is a long life ahead of you and the kids without the support of their father. My Prayers will be with you as you undate Jims progress .

  16. Carol says:

    No disease is friendly but this one just takes you and your loved one to dark and painful places without cause or concern. There are moments to treasure but It is still so undignified and unmerciful a process. I pray your husband’s final lap on this marathon is short and I hope and pray for strength and calm and serenity to find you as you rebuild your life with your children.

  17. Laura says:

    Dear Karen, My heart aches for you and your children. My father, also ex-military, suffered for 16 years with this brutal disease (EOAD). The last 2.5 years were almost unbearable for our family. Unlike your kids, I was an adult when he was diagnosed. The helpless pain we felt as we watched him mercilessly suffer, can only be truly understood by those who have lived through it.
    I feel like my Dad’s final gift to his family was to wait until we were not there (and someone was usually with him). As in life, Dad just wanted to protect us, keep us safe from harm or sadness.
    Please know that I will be holding space in my heart for your family, and praying for Jim’s passing to be a peaceful one.

  18. Jane Gayer says:

    I have been reading your posts since Oct 2013. I have never commented. But now, I want you to know that I am with you, silently, still and hushed. Support unspoken, pain understood, wordless, frozen in waiting; knowing that someday I too will set by a bed watching this monster’s final ravage.

  19. Sandy says:

    Praying for a quick and peaceful passing. I hope the quick part doesn’t sound harsh, but I know when my mom is at that point I will be praying for the same thing. I hate this disease!

  20. R. Bryant says:

    Karen & the kids,
    You are loved and THANK YOU for sharing your posts.
    I know that it will educate/open their eyes, for those that refuse to believe that young people have Alzheimers. Perhaps it will help my adult children. Support for you always, I’m with you on the Right to Die issue and I firmly believe what Sandy has posted.

  21. linda says:

    We did this with my sis in law over a year ago…after 13 long years..the hospice nurses in Raleigh were so patient and caring..five long days of hell on earth..we wanted and needed dr.kervorkian..if there is no future of survival. .why can’t there be a humane ending..thoughts and prayers for you all …from Jacksonville nc

  22. Janice says:

    This won’t make these moments any easier, but I learned that someone who is actively dying is not feeling the sense of starvation or thirst. This is not my area of expertise, but information given me by the loving hospice caregivers who were with us during each of my parent’s last days–I was very upset that my mom was suffering without food and water. What I learned is that food and water is what our bodies need in order to continue living. They are no longer needed when we are preparing to die. So someone is not suffering as long as he is not in pain. We were told to do exactly what you were doing, stay nearby, express love, and let our loved one know that we love him, that we were going to be very sad but that we would be o.k. and that it was o.k. to go. It is all a mystery, but there must be something to it all. The hospice worker actually looked me in the eye and said “This is a sacred time in your family”–her implication was that I should treat is as such, so I did. She was right. Peace be with you and your family.

  23. Maria Cordero says:

    Watching a loved one pass is excruciatingly painful for everyone. Karen, my heart goes out to all of you.

  24. nena says:

    We are mourning WITH you, Karen, and our hearts are broken. I hope you know we are with you in prayer and spirit. So many of us with EOAD spouses wait in fear for this moment. I am so sorry. For you. Your children. For all of us. May God be merciful and give Jim peace.

  25. Bertie says:

    Karen,
    Thank you so much for sharing your journey. My mother (age 91) is in stage 6 Alz. Reading your words gives me strength to keep going. I have been amazed by your strength and that of your children.
    While death of a spouse or father is never easy, it is time to let Jim go. I too believe in a dignified death. May he pass soon into the arms of our blessed Father where he will be made whole again.
    Thank you for your battle to bring more attention to Alzheimer’s. Some day there will be a cure.
    Praying for you and the kids.

  26. Cindy says:

    You are right and I am so very sorry. Thank you for sharing the journey that I will also have to take, so that I have some idea of what to expect. It must be agonizing and I ache for you and your family. You are in my prayers each day. Praying for peace, and rest…

  27. Tami L. Litvak says:

    Your family is in my prayers, cyberhugs to all.

  28. Lynne says:

    Since reading my your posts over the last few days I am sharing your grief as would any close friends. Your experiences have helped me more than you will ever know. I am in mourning for your loss, Jim’s lost world, and your children’s pain at much too young an age. Much love and respect to you and yours.

  29. Loretta says:

    I pray the Lord sends for Jim tonight for his sake & all of yours. We recently brought in hospice for my MIL who has Alzheimer’s. It does suck.

  30. Brita Mizelle says:

    Keeping all of you in prayer that our God will be merciful and swift. I am thankful for you, as you are able to voice what many of us as caregiver are feeling.

  31. Kat says:

    You described my day perfectly and my aunt’s condition perfectly. My aunt is at the same place in this journey as your Jim. Your thoughts today have been my thoughts. We are not alone in this journey, but it does seem lonely.. Hugs.

  32. Jana says:

    Continue to hold you, Jim and your children in my thoughts and prayers. Peace be to all of you

  33. Ann says:

    (((( Karen )))) … I remember those days at the end – sitting by my mom’s bed holding her hand, stroking her hair, talking to her and wondering if she heard – or understood – my words. She was melting away – literally – before my eyes. That vibrant full-of-life woman would have never wanted the end to be long and drawn out. But it was.

    Waiting, watching, wondering, listening. Praying God would take her yet desperately wanting to hang onto her forever. My heart breaks for you. Seeing your life partner go through this… I’m so sorry.

    And I agree with your comments regarding end of life… a peaceful swift end without pain and lingering. It should be a choice, a viable option. Praying for you, Jim, and the kids.

  34. Michelle B says:

    Hugs to all. Prayers.

  35. Lee Ann says:

    I’m a hospice nurse. You need to know that when someone dehydrates, doesn’t eat or drink, they are not suffering. Once a person dehydrates, most (If not all) pain goes away. It is not torture to them. Its horrible for us, because to be loving caring people we want to give them a drink, get them food. But it is the most humane thing that can be done.

    Prayers for you and the kids. Prayers for Jim. I’m so very sorry for the losses you are going through.

  36. Pat says:

    My prayers are with you. I am 24/7 caregiver to my spouse diagnosed with ALZ in 2009. I found using a headphone and playing CDs of music he once lived extremely soothing and comforting to him. It surprised me because its something with the headphones and brain connection that is very restful. Be Blessed.

  37. Chris says:

    Peace to your family. And while it seemed to come quickly, it seems to last forever. Spend this time taking him down memory lane. Talk about your life together. Talk about your kids and what they will grow up to be because of his influence. Assure him that his life matters and while he will be missed, it is time for his next journey-to join his family that has gone before him. Let him know that it’s okay to go and that you and the kids will be okay. My heart breaks for your family. We all know how this disease ends, but we are always surprised when the end arrives. Prayers for you all.

  38. Dear Karen, Saying I’m sorry doesn’t come close to saying what I feel. I lost my Joe but you having to face this tragedy at such a young age and with children still at home, I don’t know how you are doing it. I wish I had shared this with you.The day before Joe died and the day he died. Joe had a blood clot in his thigh and was in sever pain. We were so lucky to have a Doctor prescribe morphine given every few hours. Joe slept for about 30 hours. He opened his eyes and I sat on the bed and talked and kissed him. I knew this was the end. When he opened his eyes it was as if he was calling for me. He shut his eyes and maybe 30 minutes later he opened his eyes and was looking all about. His mouth was open as if he wanted to speak. Then the biggest smile came over his face, with joy he took his last breath and at that moment I knew hi brain was freed of tangles and plaque. I hope others facing this end of life will request morphine for their loved one. It makes the transition so much easier for your loved one and the family. Grief may not move in for several months but know: “The pain is now the happiness you shared” a quote from C. S. Lewis. Words don’t make this easier but know that the world knows your pain. From one caregiver to another. …from one widow to another.

  39. Joanne says:

    karen, you and your children are in my prayers.
    I wish Jim peace. I wish you comfort. I
    Pray there will one day be a cure.

  40. Michelle Fox says:

    My heart aches for you Karen…and the kids. Jim should NOT be in any pain. hospice knows that, he should be medicated. I was adamant that Mom be pain free as she was transitioning. Insist!!! That is their job!
    I am so sorry. Prayers that Jim go peacefully and that you and the children learn to live life without….his presence. ?

  41. Jeri says:

    Michelle is right Karen. Jim should not be in any pain. That is one of the main things hospice does….see to it that the patient is pain free and not suffering IN ANY WAY!. You and your family are in my thoughts and prayers during this very difficult and sad time.

  42. Jolinda says:

    I am sending you light…freedom from thought and reason, wordless moments to be together in the love that has been and is your own. I send comfort to your children and Spring soon to bring new hope. Love for Jim.

  43. Katrine Rush says:

    Karen, I am so sorry about Jim. What a wonderful man. You are so strong. I wish peace for Jim and healing for you all. My father died when I was very young and it affected me and left it’s scars. And, more importantly, it made me more compassionate, empathetic and stronger on a deeper level, than I would have been, I am sure of it. I am lighting a candle for Jim. ?

  44. Lisa says:

    I just went through this with my mom. I read this with tears pouring from my eyes. I relived every struggled breath and watching her die. Feeling guilty for the relief that she is not suffering. Wanting to be more supportive of my dad. Ironically wanting my mom, needing that hug that only a mother can give, while watching her slip away. I haven’t really let go and grieved and it’s hitting me today after reading this.

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