Sharing an update that isn’t good

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Jim was admitted to the hospital yesterday. I came home from work and he was out of it. In a way that screamed, “Help me. Help me. I don’t know who you are or what is going on and I can’t really stand up by myself even though I am.”

I startled myself with my shock and surprise at his demeanor. I was not able to focus and think clearly. I was scared. Not typical behavior for me. I very seldom lose my ability to think clearly in a situation, especially one where calm heads need to prevail. It was just so out of the blue and so unexpected. I had just been sitting with Jim only a few hours before, during my lunch break, on our front porch having a heart to heart (as best we can these days). This wasn’t happening the way I have pictured it for so long.

I did realize that the kids would be coming home from school. I realized Brad had piano. I remembered I was supposed to be attending a work event. I knew the laundry in the washing machine needed to go in the dryer. I just wasn’t able to be functionally decisive on a plan of action. But a wonderful friend came over and took charge. She took command and then I had many friends who moved into action. Taking the kids. Helping me think. Bringing me dinner to the hospital as I waited in the ER. Texting me their support and offers to help. Not just my girlfriends, but guy friends and husbands of friends, who technically are friends of Jim’s as well. As sad and worried as I was, I knew I wasn’t alone. With every text, phone call and offer to help, I could feel another steel link to the net being built under me growing. What a comforting feeling in the midst of such confusion and worry. My blessings are immeasurable in so many ways while at the same time I feel so unblessed. What I hope those that are building our safety bubble underneath us understand is how important to us they are and how eternally grateful I am. I cannot repay the underlying benefit of the help and refuge I have received. And I know there is so much more to come.

Yet, later that evening, walking in the dark parking lot, through the misty rain to my cold, empty van, I was alone. As alone and forlorn as I have ever felt in my life. I was alone and realized that was my life now. Even if Jim recovers to his baseline behavior, I am in this world without a partner. Even though I feel lonely on a daily basis, with Jim literally sitting next to me, it is a different kind of alone when your spouse is no longer with you physically either. Who will I call if I break down on the side of the road? Who will I lie next to in bed at night and wake up with each morning? Who will hold my hand and rub my back and tell me how much I mean to them? Who will love me with all of my faults? Who will smile at me and make all my troubles disappear? Who will care as much about my children as I do? Who will I be able to sit comfortably with in silence? It is supposed to be Jim. It has always been Jim. And now it’s not.

I HATE ALZHEIMER’S DISEASE!

This disease has been real each time he has forgotten something or done something uncharacteristic for him. But yesterday, seeing him shaking and unfocused and unable to verbalize a sentence was a new level of heartbreak and despair. As he lay in the hospital bed, looking pail, frail and old, I was dismayed when he couldn’t recall my name. Or our children’s names. Or remember he was in the Air Force. I was even more shocked when he thought his brother and his mother were still alive. Things I have been expecting and knowing were coming eventually, had finally arrived. And even though I have known this day was coming, I was still not prepared.

The “doctor” (remind me to tell you why I put quotation marks around this; I don’t want to lose focus here and his comments will piss too many of you off) thinks it is an infection and once the infection has cleared up, he is expected to make a “full recovery”. Whatever that means. What is a full recovery for Jim? His “normal” changes weekly, so I am not sure.

I am not ready. I am not ready to let him go. As much as I don’t want him to suffer and as much as I don’t want to deal with all that is coming with Alzheimer’s Disease, I am not ready to be as alone as I felt in my walk to the van.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (34)

34 Responses to “Sharing an update that isn’t good”

  1. Rita says:

    You are in my prayers. You are lucky to have support from some many friends. Take care of yourself too.

  2. diana hull says:

    My heart goes out to you. I felt the same as you about my security. Ive lost it. I would love to hear the reason you put doctor in quotation marks.

  3. Betty says:

    Holding you and family in prayers. You are so much stronger than you feel right now. So glad you have such a good support group.

  4. Opal Tipton says:

    I’m so sorry Karen! It’s the most terrifying thing in the world to go through. I’ve been there! Several times so far! I feel that my husband is heading towards the 7th stage of this hideous disease. So I know exactly how you feel! My heart goes out to you and your children. It’s so scary because you know what the future holds but it’s so much more scary when you’re in it. At the same time time I want to thank you for your posts as you are able to verbalize what we’re all going through. Please, try to stay strong sweetie….I’m praying for you as we go through this together! You, me and millions more. Blessings……..

  5. Susan says:

    It sounds like a Urinary Tract Infection. Once it clears up, he should go back to where he was. My mother-in-law hallucinates all the time, and sees loved ones who are deceased. It is an awful disease. I wish you well in the future. Take it one day at a time.

  6. suzi says:

    Karen, you have my prayers. Can I bring dinner, maybe Friday?
    Suzi

  7. Penny Morin says:

    Praying for you Karen & your family. So glad you have the support from so many.

  8. Chris says:

    Karen-Your family is in my thoughts and prayers. I’ve learned that this part of the journey is a bit like cliff diving. You know it’s coming and you feel so helpless. Let’s hope you can get him out of the hospital ASAP. It will only be more confusing for him there.
    Prayers…

  9. kerry daniels says:

    I promise to pray for you. I am so sorry you are losing Jim. I’m so sorry you are lonely. I do understand a little, this all happened to my step mom, we lost my dad in December. She doesn’t have the internet to reach out, I’m happy you have this blog, it helps other people in so many ways, as I think it helps you too. My family is doing the walk to end Alzheimers on Saturday in Grand Rapids, Mi. I hate Alzheimers too, sooooo much. We have raised over $2000.00.

  10. kerry daniels says:

    It seems that every time you get a sickness with Alzheimers its a big set back, and its sad but my dad took a long time to get a little better after he was also hospitalized with a virus, he was so super confused with the fever also. It seems they never recover fully to the level they were. I’m so sorry. :( It hits them hard.

  11. Tamie says:

    Praying for you all Karen.

  12. Michelle Fox says:

    Karen, my heart sank with your first few sentences…I am so sorry but know exactly where you are. IF it is a UTI, in my opinion, it still changes them for the long term as does a hospital stay. It may be a UTI and a drop in cognitive level combined. Who knows? That is the problem. I ran into a few of those “doctors” during my caregiving years. Be prepared, you MAY need someone at the house when Jim returns home until he adjusts to his new normal. You really are going to have to take this step by step.
    You are in my prayers, as always, the kids and Jim. God Bless your neighbors and friends <3

  13. Joanie says:

    May God hold you up in your suffering and loss. My heart aches for you and your family.

  14. Liz Guy says:

    Karen, My mother has dementia and is prone to UTIs. They just affect those with cognitive impairment differently and cause them to act stranger than “normal.” I’m sorry. I know this all just sucks!

  15. Sandy says:

    Thinking of you and sending prayers your way. Thank god you have such loving and supportive friends and family by you. Wishing you peace.

  16. Kate says:

    Once again, thank you, Karen, for sharing so openly and honestly. It isn’t easy to read your words, but it is some comfort to know that we are not alone in grieving over what this disease is taking from us and from our loved ones.

  17. Stacey says:

    Karen, I am totally praying for you. I have been in your seat and know what you are going through. Here if you need me!!!!!!!

  18. Laura says:

    It could very well be a urinary tract infection. My mother has had one and she really went “off the handle” much more than usual. After the fact, it all made sense. He will get back to HIS normal. You are not losing him. He simply does not know how to verbalize his pain. prayers sent up for you.

  19. Jeanne Sapia says:

    My thoughts and prayers are with you and “Jimmy” as I call him. I know how hard this can be on everyone.

  20. Kimberly Smith says:

    Karen, I am so deeply sorry about what you are going through. I haven’t reached that point with my Mom or my husband, but I know it’s coming and it scares me to death. My Mom had to have a hysterectomy a couple of years ago and she was only supposed to stay overnight. When I went to the hospital the next morning, she was totally out of touch with reality. She thought she was at my sister’s house and she had a bucket picking up pecans. When the doctor asked her how she was feeling after the surgery and she quickly told him she had not had surgery and so many more things. He kept her for several days running tests to see if she’d had a stroke and a lot of other things. This was before we had a diagnosis of Frontotemporal dementia. They finally decided it was because of her age and the anesthesia that made her act the way she did. It took about a week after I brought her home before her head finally cleared. I’ve also learned with my husband that cold/allergy medications have an anticholergenic effect and he really gets confused and needs a lot more assistance if he has to take anything. I’ve told you all of this that with my experiences so far, Alzheimer’s patient are affected by so many things, medications, illness, surgery, too much physical activity, stress, extreme heat/cold and so many more, that make their confusion/agitation much worse. I don’t know what other caregivers have experienced, but this is what I’ve gone through so far. I’m praying for you and your family. Sending a big hug your way, k.

  21. c.shefik says:

    may God help you I know how you feel.But you are also so lucky to have so many friends.

  22. Elizabeth Brewer says:

    It may seem strange to say “I love you” to someone you never met, but we have walked the same road. I LOVE YOU…and Brad…and Frances…and Jim!

  23. Erica Robertson says:

    None of us can truly understand what you are going through, reading this makes me feel blessed for my misfortunes. You are always in my thoughts and prayers amd, I love you for your strength, honestly and beauty in a time when many would just close down. You are a true hero for so many and give strength to all who need it.

  24. Lynnet H says:

    I’ve wanted to write for some time. You express the emotions and thoughts so well of a caregiver. I find myself in your writings, though it is my mother who has Alzheimer’s. I think of you often and am so sorry you have to make this journey.

    My mom gets frequent UTI’s and it radically changes her behavior like crazy. She does “return” to where she was in the disease. Praying for you and the kids

  25. Marilyn Klotzer says:

    Karen I am so sad for you and Jimmy. I remember him running in and out of my house, this happy young man looking for :Doug . Thinking of how. He is now just breaks my heart. Love and prayers to you. And the children.

  26. Marilyn Klotzer says:

    I feel so sad for you and Jimmy. Not thruway hews when he and Douglayed around the house. He was such a happy guy always making me laugh and now he’s changed completely. A Jimmy I don’t know.. Love and prayers to you and your family.

  27. Lee Ann says:

    I remember working in the memory unit, we could always tell when a certain patient had a UTI. because she would begin hitting people when she was angry. Another resident would look like she was dying. We really almost expected her to pass away, until we got the antibiotics in her, when she would perk right up again. Everybody with dementia or age acts different with a UTI. Give him some time and antibiotics and I bet he’ll be back to normal.

    Take care of yourself, let us know how he’s doing. Prayers for the whole family.

  28. Corinne says:

    Love you Karen! You are an amazing wife and mother! Jim and the kids are so blessed to have you! Sending constant thoughts, prayers, and love daily to you and your family!

  29. Angela Gonier Ray says:

    Karen this is absolutely heartbreaking to read. I can’t imagine the feelings of helplessness and fear that must have overcome you when finding Jim this way. You write so beautifully even in your sorrow. I feel as though I’m standing right beside you as you go down this awful Alzheimers Road. Prayers to you and your family. So glad you do have such a support system up there. I hope the “doctor” is right. :-)

  30. A UTI will cause us to think the Alzheimer’s suddenly dipped several stages. Joe just got over an UTI. I was still shocked when he began to act different. Opal mentioned that her husband may be in stage 7. I think Joe is in stage 7 and my mind wonders what is next. Will it be no eating or drinking and the fetal position? I pray that the end comes first. God isn’t finished with Joe and I guess God knows I have more to learn. When we all meet in Heaven we will know all our sister-caregivers. Enjoy having Jim’s foot looking for yours in the middle of the night for me it is a memory. God Bless you and your family.

  31. joan says:

    Poor Jim,he dosen’t deserve this,alz is the cruelest disease.I am scared for this day to come,I’m off with my husband,he showed up at our daughters house and didn’t know her.It’s only been 2 years but I have to get homecare before I go back to work.Hope your children are ok and God is merciful to Jim,take care!

  32. Wendy Sweigert says:

    Karen, I am so sorry for all that you all are going through. My husband’s ALZ has kicked into high gear with the stage 4 cancer. I am so sad and yet have no time to grieve as caregiving is consuming my days and nights. Thinking of you all.

  33. Lynne Ellis says:

    I hope the hospital visit is a short one and you get Jim back to where he feels most comfortable. My husband and yours seemed to be on about the same path until recently, so I feel your stories will also be mine in a very short time. We are in the process of moving into a retirement community. I’m 55 — I really am not ready to be there, but it is the best thing for our future, so I can have help taking care of him as long as possible in a home we share together. I think about you everyday Karen. Take strength from the support of your loved ones, and don’t hesitate to ask someone to just be with you sometimes when you are feeling alone. Your friends will want to, but are afraid to ask because they fear they are intruding.

  34. Amy says:

    My experience was that ANY time there was a change in routine, it seemed as though my husband lost ground w/ his Alz. He was diagnosed at 50, & just passed away in May (2wks after his 58th bday). I was with him when he died, and it was very peaceful. I was devastated to lose him, but it was a blessing to know he was no longer going through his own personal hell.

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