Sorrows Under the Mistletoe

Brad putting on the angel. Dec. 2015.

Brad putting on the angel. Dec. 2015.

My heart is heavy. My mind is scrambled. My energy wanes day to day. My world is spinning out of control with a speed and slowness that are confusing and indecipherable.

Jim is still progressing. Of course he is. He has a disease with no survivors. This day and this hurt was promised to us years ago. But to be a front row spectator to his absence while being present is perfect torture. I would prefer to be waterboarded while having my eyelashes plucked out one at a time.

He no longer stands up straight. His posture is that of a 95 year old with extremely poor mien, including the shuffling, the humped shoulders and the constant stare at the floor or something no one else can see.

He drools. A lot. Sometimes.

He mumbles. He says a word. He mumbles more. He is silent.

He feeds himself. He needs help being fed.

He is down to 160 pounds.

He has had 4 Urinary Tract Infections in just over two months. He has had a catheter in for that same amount of time.

He smiles. He picks up invisible things off the floor and puts them in his pocket or hands them to me.

He walks away.

He falls asleep while sitting in a chair or carrying on a “conversation”.

He can’t read. He can’t write.

He has had a few days of not knowing who I am.

He often doesn’t know the children’s names, but does usually recognize them.

He loves company but walks away a few minutes after you arrive.

He doesn’t watch TV.

He will still kick a ball or try to shoot some baskets. On the right day.

He cannot go to the bathroom by himself.

He cannot tell us if something is hurting.

He cannot get dressed by himself.

He still hugs me and kisses me. He still lights up when I arrive to visit him. And then sometimes he doesn’t.

He lives each day in his own world and I try to visit and understand but I only end up crying in the car on the way home or late at night when I search through old photos trying to put together a photo album for him.

I show up to my life half heartedly because the other half of my heart and my life has left me stranded midway and so part of my chest remains empty.

There are times I look at him and wish he would die. I see him so unlike the Jim who took so much pride in himself with his straight back, quick wit, and ironed and clean clothes. He would never walk around with pants on inside out or food spilled down his shirt or drool falling down his chin onto the floor. He would never stand for someone else wiping him clean. Then I think about him actually dying and I don’t want that either. I want another conversation. I want another date night. I want him to play in the backyard with the kids or to cheer them on at a game. I want him to walk through the front door, turning the key himself, walking in with the smile I have loved for many years.  I want him to not be where he is or who he is now, but I can’t have the original back either. It is a waiting game. We know the ending, but not the timeframe or exactly how bad it will get. Every time I think we are at a place so much harder than before, it gets even worse.

Each time I visit him, I am exhausted, depressed, lonely, sad and relieved he is at a place that takes care of him so much better than I ever could.

I am trying to keep our regular traditions up for the kids and I suppose for my own sanity. Moving forward. We got our tree at the same tree farm. But instead of the typical lights, the three of us wanted different things: Frances wanted white lights, Brad wanted multi-colored and I liked the ones we have had the past couple of years with red, green and white. So, I did what any stable Mom would do, I said “screw it” or something along those lines and put one strand of each on the tree. I can pretty much guarantee you there isn’t another tree lit like ours and I can also guarantee it won’t win any “best” awards. But I really don’t care. I actually kind of like it. Sort of a symbol of the way I feel: discombobulated and completely unorthodox.

While the kids and I were listening to Christmas music and putting ornaments on our unique tree, Brad stopped, sat on the couch, and just looked at the tree. When I asked him if he was ok, his reply: “We should have brought Dad home to help with the tree. He should be here.”  And he was right. He should be here. He should be helping with the decorations and sipping eggnog and sitting with me after the kids go to bed, silently leaning into each other as we lay together on the couch in the glow of the lights. He should be running to the store for last minute ingredients and attending band concerts and helping with homework and sneaking around to hide the mistletoe so I will end up standing under it so he could grab a kiss. He should be watching A Christmas Story with us for the 100th time and laughing out loud in that way he did, where he almost couldn’t stop.  He should be here, with us, but that will never be again and it hurts. Like Hell. But I can’t wallow in this immeasurable grief because I have to get up, do the laundry, fix some dinner, go grocery shopping, visit Jim, follow up with doctor appointments, put up the decorations, get all the kids gifts together (plus others on our lists) and somewhere in there get a shower and act like I’m ok so my kids can have a decent holiday since their summer and fall have pretty much revolved around one medical emergency after another with their Dad. After all, this isn’t about me. This is about a man who is leaving his children when he desperately doesn’t want to. It is about two amazing kids losing their father. It is about moving ahead while searching for the right way to let go of the past and hold on to it at the same time.

Jim opening a gift from my parents. Dec 2015.

Jim opening a gift from my parents. Dec 2015.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (26)

26 Responses to “Sorrows Under the Mistletoe”

  1. Catherine Nugent says:

    Hello from Downunder! I guess it makes not a jot of difference that I follow your excoriating grief from here, in Australia. What I can I tell you? That I would reach my arms around the world if I could save you and your family from this cruel journey…? That your honest words wrench hot tears from my eyes..? Dear God! Comfort Karen, Brad and Frances; and release Jim from this torment. Thank you.

  2. kersten says:

    Karen – I just lost my mom in March to young onset. She was only 66. She was sick at about age 50. My dad,sister and I know some of your emotions. I am 45 and have kids 2, 4,6 that she never got to be a grandmother to. It is so hard and if you need support – please feel free to contact me. Ours was familial so also took her little brother and mom. They eventually find peace but miss out on so much they should have enjoyed. I struggled with my faith a bit but came to believe God has a plan.

  3. Tami L. Litvak says:

    ((((Thinking of you and the kiddos….Thank you for sharing your family’s journey)))))

  4. Leslie Weil says:

    I lost my Mother to Alz nearly five years ago after caring her for 10 years. The final year she was in a close Nursing Home that gave her excellent care. I spent hours with her every day. That it is a long good-bye is an understatement. I understand your pain. I miss her terribly.

  5. Kathy Taylor says:

    My heart aches for you and your children. I have two grown kids and 3 wonderful grandchildren. My dear husband died of this horrible disease in August. Last
    Christmas I could go to him with my hugs and kisses this year I can’t. I miss him so much and also wish for him back well and healthy, but I know that will never be again. God Bless you all and cherish the memories and hug and kiss him every day. He is still Jim somewhere inside!

  6. norm says:

    Then I think about him actually dying and I don’t want that either.

    Letting him die will be hard but in the end keeping him alive through the miracles of modern health care will be harder on you and yours. This is the time I wrote you about so long ago in past comments. You have to steel yourself to the fact that it is time for Jim to go.
    I would not want to live as your husband is, I’m sure Jim would feel the same if he were able to articulate. You have to be ready to tell the medical people, no more IV sticks, pain meds if he needs them but that is it and let nature take its course.
    I’m sorry for your loss.

  7. Stacy says:

    You are a wife a mother a daughter a precious Friend. You are Karen and because of who you are you will press on. Doing your best everyday and all it encompasses. Know that all this is not in vain, there is a purpose. God has a plan for you and only you could do what he has planned. You are such a role model for Frankie and Brad. Keep your head high and press on Karen because being you is a blessing to all who know you. You are doing your best and you should find comfort in that. I pray for your strength and that your family can find some peace and merriment in the season. Xoxo

  8. Joanie says:

    My heart aches deeply for you and your family. Our family, too, has been afflicted by this horrible disease, not once, but twice. Praying for you, your husband, your children.

  9. Anne Gardner says:

    My sympathy to you and your family. I live with many of these issues on a daily basis; however, difference being older age, and adult children.

  10. Donna says:

    My Dad died from this disease when my youngest of our 4 children was 3. I remember having all of your same feelings. Karen, you are doing a wonderful job! You don’t realize this now, but you are an inspiration to them. I know it is so difficult leaving him there, but you are giving him the best care you possibly can. Take time to feel good about yourself and be proud of being such a great mom and wife! Merry Christmas!

  11. Denise Byrum says:

    I can only imagine. Thank you for sharing your heart during this most difficult time. My heart hurts for you so and the way I know to respond is to pray for God to provide you with your every need on every day. May He give you peace in the midst of chaos, joy in the midst of sadness and strength when you can’t go another step. Love you and your kids and Jim even if I don’t know you.

  12. Martina says:

    Karen Thank you for sharing your story with us. My heart just hurts for the ache you and your little ones must feel experiencing this horrible disease first hand. I will be thinking of you this holiday. Many blessings to you and your family.

  13. John King says:

    Karen, you are a remarkable woman, support for Jim and your children, and advocate of hope that some day we will find a cure for this terrible disease. Take pleasure from those few seconds when Jim can make you smile, laugh or feel his love. Merry Christmas and may God bless,

  14. Judy says:

    Thank you for sharing. We all have our trials but your seems like the hardest imaginable. To have the love of your life die by degrees before your eyes is torture I am sure. My problems are minor by comparison. I pray God will give you what you need to live each day with some measure of comfort and peace in your heart. God bless you!

  15. Donna Pittman says:

    We are praying for you and your family. You are a very strong and loving wife and mother. Thank you for sharing your story. We pray God will give you strength and love to help you with what is ahead. May God bless you and your family.

  16. Lauri says:

    Your words express exactly what I felt and went through with my mom. She passed away over a year ago and while I am happy for her that she isn’t suffering anymore, not a day goes by that I don’t try to understand why this evil disease took her away from her grandchildren so early. I’m sorry you’re going through this and I pray for you daily. God Bless you and your children as you find a new normal together.

  17. Lois keller says:

    It’s bad, I know. Try to think of how Jim would want you to feel. He wouldn’t ever want you to be so frustrated, hurt, sad and confused because of him. I know these are only words and only part of the story, but you have to be stronger than you ever imagined you could be, and you are. I’ve seen your posts, shared your sorrow, anger and confusion. Just know, your families story is important and I wish you some peace and joy knowing that your love for Jim and your kids is spreading around the world.

  18. Laura says:

    Karen, you are not alone. There will be peace soon. Do not feel guilty about LIVING and living for your kids. Life right now is tough, but you are tougher – yet softer – all at the same time. Blessings to you and your family.

  19. JOAN says:

    I felt sad and down as I left work today.It’s so unfair.
    My husband had his first uti and I’m wondering about next year.Theres got to be better days ahead when this is all over.I guess the best we can do is try to have peace in our hearts.Merry Christmas to all!

  20. Kimberly Smith says:

    I pray for you and your family daily. My husband has Younger Onset Alzheimer’s and I started following your blog in 2013 and you have helped me and so many others with your honesty. I also care for my Mom in our home with Frontotemporal dementia. The stress of being a full time caregiver to two adults is so overwhelming I can barely breath at times. Sending hugs your way, k.

  21. I have felt all you are feeling. I can hardly read what you write because the tears blur my vision. Every year when I take the tree down I always wonder what will be different next Christmas. Different doesn’t come close to describing the loss of a husband. I try to remember Joe before Alzheimer’s but the disease seems to be ever present in my memory. Grief a short word that controls my mood, my life, and my future. Karen, blessing and hugs to you and your children. I will meet you in Heaven Deane Johnson

  22. Ann says:

    Karen, I’m so sorry – tears are flowing as I read this. I can’t imagine what you’re going through but I admire your strength because even if you don’t feel very strong, you ARE tough as nails. You’re doing this. You’re doing what you have to do. You’re being a great wife and mom. I just wish I could wave a magic wand and make everything okay. Sending prayers and love.

  23. Lenora says:

    During this season I am reminded that it’s all about giving, which should actually be everyday, but anyway. I want you to remember all of what Jim has given you & the kids and that is great memories. The times when it was just you & him. The lunches the dinners the getaways & then the children came which allowed you to write another chapter in your life. Everyone that is born has a story. Some are short stories, some are mysteries, some are comedies and others are tragedies. But just know that each story has the same author & he knew all the characters to play each part. You did not have to try out for the part, it was custom to fit only you. For before you were formed in your mothers womb God placed in you all you would need for this story. And at anytime you feel you are not up to doing your part, just ask if you could take a break and pick it up tomorrow. I know he understands and will not hold it against you. Your family & supporting friends are in my prayers. And just know God has faith in you & so do I. Merry Christmas & Happy New Year

  24. Karen, thank you for having the strength to share your thoughts. It connects all of us. Your family is very fortunate to have you as their leader. Gigantic hugs for all you this holiday season.

  25. Betty Haralson says:

    I’ve walked the same path as you and I know the pain of being the caregiver. I felt I was fortunate to be able to care for my sweetheart at home until the day he went to Heaven. Now after a year of being without him, not a day goes by that I don’t wish we could go back and start all over again…even knowing the outcome and knowing the exhaustion of everyday living. I hope people don’t forget there are still battles to be won for those who suffer from this disgusting disease. I pray daily for those still suffering. God bless you and yours.

  26. Jeri says:

    Hi Karen….. like so many, I sometimes find your words hard to read. I’m just so sorry you and your kids are going thru this. My phone sends me a memory photo each day from a year ago…..and on December 14 I got the most precious memory when a picture of Dwight popped up. It was when he was at the assisted living home…looking so handsome :) By the photo you couldn’t really tell how much alzheimer’s had already affected him. But a few months later he was gone. That was 6 months ago and I’m really struggling thru the holidays. The “whys”….the “what ifs”….and the “if only”. The memories of 37 years together are there…popping up in my mind, sometimes at the strangest times…..but always welcome even though they often bring tears. I miss him so much it hurts. I want you to know you and your family are thought of often. And I hope you can somehow have a nice, peaceful holiday. Hugs to you and your children and please give Jim a special hug from me. God bless you all. Merry Christmas!!

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