Rough days ahead


younger onset alzheimer's disease

JIm, circa 1996. I miss that smile and full of life look. Notice the box of Raisin Bran, even back then. (for a future post)

I am not sure where to start this. Today was an extremely rough day. Rough for me. Rough for Jim. Rough for Frances. Rough for my friends. Just rough all the way around.

I had to be in the office first thing, so I was out the door around 7. No emergency phone calls from Jim or the kids, so I thought everything was fine. During my second meeting of the morning, around 10:30, I get a phone call from Jim.

I could tell immediately from his voice that something was wrong.

“Bad news. I am locked out of the house. “

“How? You have to have a key to lock the front door. What happened?”

“I don’t know. I took Duke for a walk and now I can’t find the keys.”

“Look around the front porch. Have you re-traced your walk?”


So, I am sitting in a meeting, trying to remain professional, and trying to figure out how I can get him back in the house. I am 45 minutes away. I start texting friends that have keys and find one that can quickly go to the house to let him and Duke in.

I am not too terribly concerned because at this point I have faith that we will re-trace his steps and somehow find them. Or someone in the neighborhood will find them and return them to us.

Much later,  I stop by the house to check on him. We start our discussion of exactly what happened to the keys. This was the last pair of keys we have to his car. He has lost the other 2. This is the 7th or 8th house key he has lost. (I have lost track by now). I am still not overly concerned. I know it will be ok.

But during the course of our conversation, I lose it.

One of my Christmas gifts to Jim was a key finder. You attach one to your keychain and then you have a clicker to press when you can’t find your keys. It beeps and you listen and track down your lost keys. Simple. Right?

I asked Jim if he had tried to use this to find the keys. The first time I asked, he told me it was on a different set of keys. That confused me, but I went with it. The next time I asked, he informed me that he had heard it beeping by the trash can. So he looked, couldn’t find it and well, that was it.

Today was trash day. Today the trash was by the side of the road and the trash trucks came around and picked up our trash, our recycling and so it seems, our house and car keys.

I was so angry. How could he hear it beeping and not know he should dump out the whole trash can if need be? How come he didn’t just roll it back into our backyard before the truck came by? Why didn’t he wait for me to get home? Why did I have to be in the office today? Why couldn’t I be home to fix this for him?

The guilt. The anger. The utter dismay. All rolled into one . One long cry.

I asked Jim to leave me alone and let me take it all in. I told him to give me space. He went for a walk. Which is fine because he goes for about 5 walks a day with the dog.

I went up to our bedroom and let it out. Let out the emotions that have swirled and simmered inside for a while. The screams that came out of me were long and loud. So much so that I had someone ask me later if I had been sick because I was so hoarse. The crying. The tears. The lying on our bedroom floor, thinking in my mind that it isn’t so bad; it will be much worse; it could be worse; this can be fixed. None of it resonated with my instinctual reaction of bloodcurling screams. None of it stopped the drool from dripping onto our hardwood floor. None of it stopped my cries of pain and my eventual realization that I was going to throw up. I have never thrown up from crying. When my Grandfather died, I cried and cried and cried. When my first, second and third loves broke my heart, I cried and I cried and I cried. But I never threw up. Today, I did. Today, I lost it. I lost control. I felt helpless and lonely and alone and I didn’t have an answer. I couldn’t fix the REAL problem. I couldn’t find my Jim in all of this mess. I am rarely alone in our home. Today, I was and today I used that to release the tension, the anger,  the sadness and the defeat I felt.

I finally meandered downstairs and retrieved my phone. There was a message from a friend. She had just seen Jim walking down the road, not in our neighborhood, but on a busy road that we NEVER walk down.

So I called him.

“Where are you?”

“I am on the road by the churches.”

“Which churches?”

“The one Brad played soccer at.”
“Jim, what are you doing over there?”

“Are you headed home?”

A minute later I am on the phone with another  friend. She tells me she is close by and will look for him. She calls me about 5 minutes later to let me know that she found him, but he refused a ride and barely acknowledged her.

I can’t cry anymore. I am done for the day. I have no tears, no screams, no anger left. I am spent. It is time to start the evening routine with the kids. Practice, dinner, homework, bed. Bed. What I wouldn’t give to be able to just got to bed, pull the covers up and forget my life. Forget this nightmare.

It must be so terribly difficult for Jim. But he doesn’t show any emotion. He just keeps shuffling forward and doing whatever it is he was doing. He doesn’t seem to care or be concerned.

I spoke to a friend tonight while Frances was at softball. I was lamenting that I just can’t do this. I can’t keep doing this. And the reply was so direct and to the point, “Well what option do you have?”  They were right. I don’t have an option. I have to do this. For my kids. For Jim. For me.

I recently read an article that referenced a study about caregivers. In the study, it said that caregivers have a 63% higher mortality rate. I thought about that and decided that I was younger and healthier than most. But then I also realized that most of those caregivers in the study were only taking care of one person. They didn’t have two children to also care for. I wondered what that took my risk up to. I suppose I will never know. But I do know that I must endure. I must stay the course and learn a new normal. A normal that changes daily. A normal that sometimes makes it necessary to let it all out, even if it isn’t timely or quiet. It is part of the healing process. It is part of the survival process.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (18)

18 Responses to “Rough days ahead”

  1. Shirley says:

    Just to remind you, you are not alone in this! The other night Wayne went for a walk without me realizing it. I noticed it was too quiet, that kind of quiet when you know the little ones are up to no good. I calmly got in the car and drive around the neighborhood. Then I panicked! I called my sons and they headed over! About that time I found him. Standing in the corner,barefoot, waving me down! When I told him he scared me, that I was afraid he was lost, his reply was “I am glad you came along, cause I think I lost myself!” It was somewhat comical but also very sad as I realized he has lost himself and so have I! Those moments of screaming are okay! You need that outlet! And those that love you know you need it! Just remember that the kids need that time too And honestly so does Jim! God be with us all as we travel through the Valley of Alzheimer’s with our loves!!!

  2. Andrea says:

    I’m not going through anything like you. The last few months have been overwhelming to me as everyone in my family has health issues. I have a special needs daughter who is regressing. It took a simple text on a drive back from Chapel Hill that had me crying for an hour. I had to stop the car once to get it together. Like you I feel like what options do I have? After the cry I felt better. It will build up again…….so until the next cry! You are an amazing person! You are strong! Every time I donate to Alzheimer’s I think of you and your family.

  3. Bettye says:

    I monitor your blog because it reminds me of my early days with the monster. My expectations of how He would use it to help himself, like me Buying key finders and things !I forgot one thing, the reasoning is gone. Then came the day when I realized he could not go for a walk alone , he had become my 200 lb toddler and the screaming breakdown came and when it was over I knew the grief for my lost love the why us the lost dreams hopes plans everything was gone as I knew it. I still try to understand what he does but that’s not possible. Now when the screaming comes I go in the bathroom turn on the shower and throw toilet paper at the walls till the sobbing stops. You must allow the grief to over take you to be able to go on. Good luck on your journey into this other world

  4. Linda says:

    one of the first time my brother REALLY started to acknowledge that his wife Wanda couldn’t be left to her own devices was at a Native American pow wow…near Richmond…These events are something they had attended for years for the dancing and singing and crafts and fry bread…sometimes during the course of the day he would retreat to the parking lot and read. He barely noticed the blue lights going by him in the parking lot. Cut to the chase…he gets a phone call saying she’s at the police dept. jail…disturbing the peace…she was in jail….ooooh my.
    My little banking retired 60 year old sil was in the clin ker….He went and got her…she was soooo impressed with the little bag of ‘goodies’ that she had been given…toothbrush ..toothpaste…comb…etc…
    She was unable to answer any questions they asked her…we got her a medic alert bracelet and necklace…that said she couldn’t speak well and had both our phone numbers on it….it was very helpful.
    Eleven years later we have many ‘funny’ stories we can find humor in….at the time it was devastating….i’m surprised Jim is allowed to drive…it has been a long journey and Wanda is barely with us but we continue to love her daily. Try to dwell on not the loss but the laughter…for soon you may not hear his laugh…
    People care darling…for ARE amazing.

  5. Kathy Taylor says:

    When I found your blog several months ago, I could have been reading my story several years ago. Although our children are grown, we have small grandchildren who stayed with us a lot. Now our daughter in law will hardly let us see them. A new normal that you have found is new every day!! My Carlton traveled the world with his job. Now he asks me where I want him to set. He is totally dependent on me. I finally found a wonderful adult daycare where he goes twice a week and also a wonderful, kind caregiver that will come on weekends when I simply can’t stand it any more! I felt really guilty at first but realized that I had to do this!!! Karen, take care of yourself and your kids!!! They will be your salvation when this nightmare ends!!! God Bless all of you and everyone who is dealing with this evil disease!

  6. Jill says:

    Though we know our journey’s are very different the pain of this nature crosses lines. Your breakdowns are natural and healthy. I know that your free moments are none but I hope you get counseling for you and the boys going forward. Please don’t let Jim’s disease has done to me. <3

  7. Karen, you misquoted. The statistic is that 63% of Alzheimer’s caregivers DIE BEFORE THEIR LOVED ONE. Remember I am 52 and have had 2 heart attacks in the last 2.5 years. I remember well the day someone called me to tell me that Jay was riding his bike in the middle of the two lane highway near my house. He is now safe and appears happy in a nursing home where he is surrounded by people all day, Being with people was what he liked the most.

  8. Wanda says:

    Caring for someone with Alzheimer’s requires a lot of support, empathy and shared experiences by others. I am worried for you, Jim and your family. My 77-year old mother wanted to “go home” on daily basis and she still lived at home with my 88 year-old dad. She ran out and crossed an extremely busy street several times. Did she remember to look both ways before crossing, I cannot say. All I know is there was an angel with her. It required local police to find her twice. Those events prompted us to take action for her safety. Some caregivers use GPS wristbands to give their loved one freedom; others use door alarms or child-proof door knobs and are accompanied every time they are out. Some choose adult day care. One has to always be a step ahead when caring for a loved one with Alzheimer’s. As an advocate, I’m sure you are aware of what to expect. Decisions are not easy – some are heartbreaking. For many caregivers, jobs are affected as we become torn between caring for our loved one and providing for the necessities of life. In my case, my company had a large layoff so I was able to look for a job part-time and be with my folks on a daily basis. It is emotionally draining and frustrating at times. I share your anguish. Please accept ALL the support you can for your emotional, physcial and spiritual well-being. My prayers are with you.

  9. Lee Ann says:

    If you remember my exhusband was severely mentally ill. I well remember the time he was psychotic and hearing voices, laying on the floor, had no interest or concern over how I was reacting. The doctors had called to tell me to take him to the hospital. I went into the bathroom and cried, shrieked, hit my arms, caused bruises (I now understand how people can cut themselves to relieve pain). And I knew that no matter how hurt or sad or destroyed I was, he would not get up from the floor to come comfort me. He didn’t even care about the shrieking, because his voices were loud. That was a similar feeling to what you are going through now. And reading your post, I felt I was right there, I knew exactly how it felt.

    Because things are changing, it seems you have to adjust all over again. I would be careful about his walks with the dog, he could get lost, he could lose the dog, etc. Maybe him losing his car key was providence protecting him. Do you have adult daycare around you anywhere? He’d get pretty bored without his driving to get the kids, but I am thinking he might be ready to retire his driving. Hang in there. It will be allright. You have a tough row to hoe, but you have a lot of support around you.

  10. Wendy says:

    Karen, I think of you and the other “care warriors” daily when I am going about the business of caring for my husband with YOAD. The stress load, work load, care load is all OVERLOAD and I hold it together to the point where it makes me sick. Crying is not something I have allowed myself to do in a long time. If I start, I may not stop…I think of you often and look forward to your writings, even when painful. It helps me on this difficult journey.

  11. Ann says:

    ((((( Karen ))))) … You’re right – sometimes it’s absolutely necessary to let it out. It’s a matter of survival and I’m glad you had the opportunity to do just that – scream, yell, cry, -and let it out.

    Please know that you aren’t alone. So many of us are following your journey and praying for your strength. You are an amazing woman, wife, mother, and caregiver – never forget that. xo

  12. Molly says:

    Karen I have no words. But you are totally awesome and your kids are amazing!!! I am praying that things will be less difficult!!

  13. Hope White says:

    Karen, I didn’t know if I could continue to read your blog as it has brought back so many memories of a time I would like to forget. My dad died in 2010. I had no help as a caregiver and not only was I taking care of my dad I was taking care of my terminally ill mom who passed away 6 months after my dad. Hospice was a help but could not always be there. Crying came at night when my dad was asleep and I knew he couldn’t wander outside and get lost again as I had to have the police look for him often as he would sneak out of the house every chance he could get even knocking on doors and asking strangers to take him to the bank and would I would go to pick him up he would almost convince people he had no idea who I was. These will be hard times and I can only pray for you, Jim and your kids. If I had to do it all over again I would find a Alzheimer’s day center where he can be with other people during the day as dad did better when I took him to lunch twice a week at a Seniors Center where he suddenly woke up and lived in their world even if it was for a couple of hours.

  14. Grace says:

    Karen, it’s been 9 years since my husband first started showing signs of this terrible disease. He was in his late 50s. When I feel overwhelmed by the situation, it gives me strength to remember that if the situation was reversed, my husband would do the same for me.

    Living with alzheimer’s is like being on a sinking ship. There is no cure. It’s going down. You just don’t know how fast. I’m relatively lucky, I can focus on me and my husband. You have two other occupants on board, Brad and Frances. I’m pretty sure Jim would be the first one to tell you that they must be your priority.

    You do have some options, like daycare or an in home caregiver. I urge you to start doing some research on these options before it becomes a crisis. In the long run, it may allow you to keep Jim at home longer and give your children more positive memories of this time.

    God bless you and your family. And peace and strength to all us caregivers, Lord knows we need it :)

  15. Maureen says:

    I don’t know if I have let go of the pain or that I simply have acceptance. This disease progresses sometimes over a period of days, sometimes months. But I no longer have expectations of what my husband should or could be doing. I protect him and I have loving support.
    He cannot drive. He cannot cook. He cannot dress properly. He has difficulty taking a shower, he sometimes is at a loss for finding the words he wants to speak, etc. etc. etc. but, when I look into those blue eyes, and I see his precious smile I am grateful that I was lucky enough to find him. Because, he is the love of my lifetime. He knows I love him with all my heart and soul! I pray, I share with others my feelings, and I appreciate every day he still knows my name! I don’t expect much anymore. And, therefore, I am able to hold it together as best I can one day at a time. God bless you Kare!

  16. Joe is in the beginning of his 11th. year. May of 2010 I moved Joe to a wonderful home when he was trying to get out of the back yard. My marriage as I’ve known it is over. I cry most every day. We will all meet in Heaven in a meeting palace for caregivers. Blessings to you all.

  17. Tough to read Karen, yet I have been exactly where you are! Crying so hard you could just throw up. But your friend is right you don’t have a choice so as they say, get up and get back in the game! :) It’s not going to be easy, but hang in there, try to humor yourself a bit at times, at least that helps me some. :) Yes you are also right it’s really hard when you have to take care of hubs, the kids, the house, do your job, mow the lawn, shovel the snow, fix dinner, do the laundry……Yes, do pretty much everything!!! And in the meantime deal with a heart that is breaking as you watch your hubs continue to fall deeper into the black hole of Alzheimer’s. Really………the SuperWoman suit is on the way! :) Feel free to email me if you ever need to vent!

  18. God spoke to me through Joe

    On March 25th. My visit to Joe was about the same as all other visits. Joe was napping, I sat close and hugged him. He told me he loved me. I always bring him a snicker and a peanut planter bar. He was eating his snicker and said to me, “You’re always thinking of daddy”. That sentence said a lot more to me. I began thinking: As a young wife or even a thirty year wife I imagine most women and men would think, ok I was thinking of you now you think of me. Yes, sadly to say in the early years we keep score. My mind was spinning. From Joe’s comment I received a life time gift. He was saying that he could depend on me as I had depended on him for years. I heard from this statement how special I am to him, the comfort and security we enjoy from each other, and the love he has for me. This was a gift, plain, no bows or wrapping paper. There is no way to wrap up this gift it is a memory to last a life time. My mind didn’t stop there. I began to dissect relationships, thinking about the pronouns we use when talking to our mate. I realized that we always use, me and you but “US” is overlooked. The God light came on. “Us and You” should be the only pronouns we use in a discussion with our mate or anyone. Two is company, threes a crowd and four a disaster. Using too many “ME” you will never find a solution that is best for the marriage. I believe “ME” should be eliminated from any discussion. Only use” You and Us”. Using You means deciding what is best for “US” not what “You” want.
    Yesterday on Wednesday the 26th of March I made a speech at Baylor about my book, “I’ll Be Seeing You”. During the hour my eyes went over the class but one young girl stood out. I told the class what Joe said when he was eating his snicker. The “You and Us” had nothing to do with my book but I needed to share this with the class. There were lots of tears, not just my tears but many in the class. All the class came to me, thanking me. Several members had grandparents with Alzheimer’s. It was an awesome hour. The pretty young girl with the blond hair was the last to give me hugs. She had big tears streaming from those pretty eye. She told me she was newly married, they were having some trouble and until she heard me today she didn’t know what to do. She told me listening to my story helped her.
    This was a message from God. These thing don’t just happen our lives are programed by our God. I am forever humbled and oh so thankful to have been a witness this awesome day.
    Deane Johnson

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