Dr. Jekyll and Mr. Hyde

Younger Onset Alzheimer's Disease, family, anger, love

Jim playing with the kids in the snow. Jan. 2014.

There is a part of Alzheimer’s Disease that is very common but doesn’t necessarily affect every victim.

In recent weeks, I have seen some symptoms and signs that Jim may be succumbing to this side of Alzheimer’s and it scares me. It scares me because if he continues and he progresses with worsening behavior, I am scared I will be forced to make a choice between him and the kids.

The one thing to keep in mind is who Jim REALLY is. The man I met, fell in love with, married, delivered two children with and have slept next to for nearly 17 years is a gentle soul with no unkind words (really, I am not making this up) and sometimes the frustrating inability to stand up to others. He has just always been a pretty happy go lucky kind of guy who minded his own business and never gossiped and very, very seldom raised his voice.

Now I am afraid this horrific disease is robbing us of this enduring feature of him. Just like with most of the Alzheimer’s symptoms, it is so difficult to put into enough adjectives to help someone who has not endured this battle to understand. But I will try.

I am sure you have heard before that people afflicted with Alzheimer’s become opposite of who they once were….quiet, shy, prim and proper people suddenly start swearing and speaking their mind. It is like all of the years they thought things but held back are released through a broken dam. I have seen a little of this behavior in Jim and I am hoping that this isn’t the case.

A week or so after we got our new dog, Duke, I was trying to engage Jim in a conversation about our future. About decisions I have been losing sleep over and decisions that will either be good for our family or can cause even more hardships. One of the things I mentioned was possibly moving. Not far away. Hopefully very close by. But, something with a first floor bedroom and bathroom. We currently live in a very old home that has a lot of character but not very practical. There is always a ton of maintenance that needs to be done and Jim just isn’t able to anymore. No first floor bedroom and only a half bath downstairs. Plus, the back door has been giving him a fit. (a few nights ago I actually went to bed before Jim but was forced awake by one of our cats around 2 a.m. When I made it downstairs to let him out I saw the backdoor was wide open with the temp outside at 25°).  So, I mentioned moving to him. His first reaction caused me to drop the subject and forced me to realize that I am in this alone. “I told you not to get a dog.” That was his reply to our dilemma.  It wasn’t just the words, but the way he said it. Very hateful and spiteful. He just repeated to a friend this past weekend that he doesn’t like having the dog. I have to shake my head. Out of all 4 of us, Jim is the one that does the most with the dog. He walks him. He sits on the floor for hours (literally) and rubs his belly. He talks to him like he is a person. He is constantly doing something with the dog. Yet, when asked about Duke he will tell you he doesn’t want him. Not once has he complained to me or the kids or not wanted to help with his care. He will only say he doesn’t want the dog if you ask him. It is just bizarre.

That really wasn’t too bad as far as not being able to reign in his temper or control his voice. Truth be told, I have always been the sterner one and I have worn the title of  “mean” parent since we had our kids. No problem because I usually had the support of Jim and he was sort of the nice guy that could sweep in, lighten the mood and the load and balance the playing field. It seems that is no longer the case for us. Our balancing act it teetering.

A few weeks ago I was finishing a jog and doing my usual cool down walk and a neighbor a few doors down asked how Jim was. After I replied, she informed me she had never heard anyone yell at their kids the way she heard him yell at ours. What??? Jim? Impossible. Me? Yes. Him? A resounding NO. But I have heard him snap a few times, unexplainably at the kids. I have seen him get angry, in ways  I have never before. Not consistently and not often. But unlike I have witnessed him in all of our years together. And just like when I was figuring out something was wrong with him in the first place, when the whole world was telling me I was crazy, I see a different him now. And it scares me. Not for me. I feel like I can handle him and take care of myself. I am scared for Frances and Brad. I am afraid this is what they will remember. I am terrified he will become violent, like so many others. I am sickened to think it will all come to an angry outburst that will force my hand long before I am ready. Or before the kids are ready. Or before Jim is ready. He knows. He knows if he loses his ability to control anger and gets violent that he cannot stay with us. I really think that helps him. He loves his children and me more than anything in this world. He doesn’t want to leave us. He wants to grow old with me. He wants to watch his children grow up. And he should be able to. But I will not be able to let him stay if he becomes violent.

I see him gritting his teeth so that his jawline moves silently back and forth. I see the pressed lips and the eyes that are black and unreadable. I feel the tension in the air.

A few days ago the kids were home from school due to the weather and I had to leave to go to work. Brad begged me to stay. He said he didn’t want to stay alone with his Dad. These are terribly hard words to write. But I want, no I need, for people to understand what this disease does. The Dad that our son would not want to stay with is not THE REAL DAD! There is an imposter that has moved into our home. Sometimes he does a fantastic job imitating our Jim. And sometimes he has stolen our Jim and hid him in a dark closet that we can’t seem to unlock.

Jim and I had some heart to heart conversations not too long after he was finally diagnosed. He was still himself (for the most part) so I know his wishes. I know him. Even so, I worry about this new temper and this new uneven demeanor. It is something I dread.  Please, please don’t make me choose between my husband and my children. Please don’t let Jim become angry and ill tempered. Please don’t let him become sexually inappropriate. (Another very common issue). Please don’t let his anger seep out of him. We all have some form of anger in us. Alzheimer’s Disease erases your filter. It causes you to lose the ability to hold your tongue. So when you (and yes, Jim) are sitting at a ball game and there is a kid on the field that makes a mistake and you want to say something completely rude and inappropriate, your filter kicks in and you remain silent. (or most mature adults do) When a kid is acting inappropriately, you refrain from saying anything because the parents are sitting two rows behind you.  When your children are being silly and laughing and having a good time, you don’t snap at them tell them to stop because they are being too loud.

Please Jim, please stay in control for as long as you can. We still need you.

Younger Onset Alzheimer's DIsease

Jim and Duke out for a snowy walk. Jan. 2014.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (25)

25 Responses to “Dr. Jekyll and Mr. Hyde”

  1. Jill Clark Page says:

    Karen I read with sadness because as I mentioned before mom went from being aggressive to being passive but a lot of that was the medicines she was on. Please feel free to contact me, I would love to help with what knowledge I have. It could be the answer. My prayers remain with you and your family.

  2. Hope White says:

    Karen, my heart goes out to you during these difficult times. I was caregiver to my father with Alzheimer’s for 4 years and I too experienced the anger you speak of, at times fearing for my life and my mother’s. Hospice started my father on a medication that helped with this and we were all able to enjoy the last year with my dad without the anger and without the guilt we were all feeling. I understand the hard decisions you have in store for you and I will continue to read your inspiring blog and pray for all of you.

  3. Diane Chadwick says:

    Your last few posts have really touched me….you are really struggling. My daughter confessed to me that she can’t read your blog anymore without thinking of our family and our struggles with AD and an aging parent at home. She lives in TX and it had been a year since she had seen mom and it was nearly more than she could take to see her beloved Grammie this way. My mom has AD and she went through a period of ‘being mean’ when my dad was in the hospital and my sister, SIL, and myself took over as caregivers. I don’t know if it was because the routine had changed or just the ‘stage’ of AD but it was awful. She attempted to throw a kitchen chair at my SIL, she caught me off guard and pushed me…I nearly fell down since I was not prepared for the hard shove and she was cussing like a sailor. Because my dad was in the hospital and rehab for over 3 months mom had a month of respite care while we decompressed and took our yearly family vacation. When we came back dad moved into assisted living to continue his rehab and mom moved into the same place. We had to move her to the memory care section in mid December and dad was finally able to come home after the first of the year. It is not an easy thing to move her but she was becoming more dependant on dad and he felt that he needed to care for her. He fell in December helping her and broke 2 ribs and had a black eye while in assisted living. Sometimes you have to do things that are not easy. Dad wanted her to come home but he was not able to care for her and we were afraid if she was violent she could hurt dad in his weakened state. I pray for you as you make a decision to move….just know that it may cause Jim to ‘act out’ as he adjusts to new surroundings. AD is an awful disease….look in your mirror each morning and put your arms around youself in a hug. You have hugs, love and prayers coming from hundreds of people who follow your blog,

  4. Janet says:

    Hope White, can you share the drug that helped your dad? Karen, we are your neighbor (not literally) next door going thru the same thing. Reading your blog is helping me, stay in the moment. My mantra today is “respond don’t react”. Thanks…..again.

    • Hope White says:

      The drug that helped my dad with his anger was Risperidone, we never had another anger problem after we had him on this. Before going on this drug he had strangled me and broke my parents bay window throwing things, all that immediately stopped after being put on this drug, it was a lifesaver for our family.

  5. Connie Howard says:

    My husband Glenn ,57, started getting angry and would break things. We put him on a medication to help and he does much better. I have hired caregivers to help about 25 hours a week while a work and have a few hours to myself. That will increase as it is our goal to keep him at home as long as possible at which time he would go directly to a Memory Care Facility. We went to the movies recently and he becomes like a character in the movie responding to the dialogue or singing or humming songs in the movie. It becomes disruptive to those sitting around him. The caregiver took him for a bike ride. She had him follow behind her as he would come close to running into people. He was oblivious of their presence. He now gets up a couple times a night but does go back to bed. I have to cut his food up for him and encourage him to eat. Constipation has become an issue. His common phrases are “Trash”, “Almost there or almost done”, “Ready to go home”, “I don’t feel well”. He sits and watches DVD movies alot and seems to become a part of the movie. In Aug, the neurologist said within 6 months to a year he will need to be in the memory care facility. I t has been 6 months and while there have been changes in his behavoir, he isn’t ready for a facility. Will continue to increase hours caregivers help at home. Would like information from anyone on financial assistance through insurance or other means for help. We do not have long term care insurance.

  6. Laura says:

    Hey Karen, my mom was diagnosed 5 years ago. About a year and a half ago, she became very angry and aggressive. She cussed (horrors!), she threw, hit, nashed her teeth, stomped on our feet. My brother cares for her now since my Dad passed away in October. He says that she is much more happier now and has calmed down just a bit. I have read that different senses are losing control so other senses have to make up for them. The brain is firing off in different areas at different random times. My brother would claim that it is due to an organic diet and constant love and affection, which reassures her thus lessens the aggressive behavior. We have tried different drugs that only made her behavior worse. It would be nice to find something that will basically calm her down and let her relax a little.
    Hope and Jill …please share !

  7. Lee Ann says:

    My suggestion would be a visit to a geriatric doctor. They deal in dementia, and old people. Although Jim is still young, a geriatric doctor could have better knowledge of meds for someone dealing with dementia.

    I have friends who fought to keep Mom at home at their house, because she wanted to be with her little dog. Well, as her dementia got worse, she started kicking at the dog.

    Sit the kids down, ask them about Dad’s temper. Ask the neighbor about what yelling was going on. I’m wondering if its time for Jim to quit driving too. Sad to say, but it is progressive. Its like a stepladder, two steps up, one step back. ((hugs)) You’re strong enough to handle this. Its just scarey now because of all the indecision and change.

  8. Wendy says:

    Karen your fears are what I fear. We have only one daughter left at home and she has no patience for her dad and his missteps…I can’t imagine how things will be if/when he gets nasty. Not in his nature, but AD brings out what ever and how ever. Thinking of you, Jim and your family.

  9. Ima says:

    Karen, my husband died January 18 2014 I kelp him
    home before I had inhome hospice two months ago
    and they decided to take him to the hospice home
    where he died two days later.i was so worn out it gotten
    to to much but too changed to someone I didn’t know.hospice had a drug that help but please do what
    You have to do because of the children and your health
    I pray for you it’s a terrible disease and so very hard to
    deal with the hard is yet to come

  10. Tina M says:

    My heart goes out to you. I was in middle school when my grandfather was diagnosed. I was very close with him and spent more of my childhood with my grandparents then I did at my own house. When my grandmother needed extra help for my grandfather while she was at work, I jumped at the chance. I was so happy to be able to spend quality time with my poppa like when I was little.

    What I encountered was quite different. How humbling to have to help him dress and perform small tasks that we don’t even think twice about. Keep in mind I was only 13 at the time. We had lunch together and took walks and worked on his crossword puzzles(with the answer key taped to the bottom). I will never forget the day when he hit me for trying to help him tie his shoes. I was so upset, but I tried to not let him see.

    Yes I remember him sick and not himself, but I also remember the man he used to be before Alzheimer’s stole his identity. I hold onto those memories. He was much like your husband. He was the rock that held my mom’s family together. He could fix anything. He was so full of knowledge and he was the “fun” grandpa.

    Please try to keep those memories present for your kids. Unfortunately you can’t shield them from what’s to come, I pray for you and your family as you go through this journey.

    I am now in my 40’s and while I am still mad that my grandfather had to go through what he did, I still think more about the good times and memories we had together.

  11. Kimberly Smith says:

    Karen, this has been one of the hardest things for me to accept as a wife and caregiver are the constant mood swings, anger outbursts and just being hard to live with period. It’s been really hard on the boys, since this has been going on since 2007, when he was diagnosed with stress/anxiety symptoms. Unknown to me, it was the very early stages of Alzheimer’s. I used to think he didn’t want to be with me anymore, maybe he was having an affair or maybe it was me. It caused a lot of problems for us. The kids and I walked on eggshells just so we wouldn’t “rock the boat”. This would come and go for several years, until he started having problems with his memory in 2010 and had to retire, still due to what we were told was stress. Since his dianosis at the UAB, last February and started medications, the agitation is much better. A few weeks ago he was frustrated over not being able to complete a task and picked up an item, I won’t even say what it was, because I don’t remember, but he threw it across the room. It really frightened me and made me wonder if he was going to be mean and violent as he progresses or will he retreat and become quiet and easy going. I do know there are medications for the agitation, because my father in law who passed away two years ago with Alzheimer’s was given it and it helped so much. I really try to put myself in his shoes and I know he has to be scared out of his mind and frustrated, because even simple tasks are impossible at times. All we can do is take one day at a time and deal with it as it comes. I’ve learned you can no longer make plans, as each day is different. One of my sons walked in as I was typing this and wanted to know what I was doing.I let him read your post and he said “Mom it sounds like our house”. Thank you again for sharing your thoughts. You have helped me so much. You and so many others share the same thoughts and problems that I have, it just helps to know I’m not the only one who feels the same way.

  12. Margie says:

    Karen
    My husband was diagnosed with AD in 2012. He was becoming more easily agitated and prone to inappropriate outbursts of anger. I was walking on eggshells to try to avoid his anger. But, it didn’t matter, as any little thing could set him off.
    After expressing my fears to his doctor, he began
    another medication( seroquel). This has made a difference. He will still get angry at me ex. Slam the door. But, for now I feel safer and more comfortable.
    Possibly, at this point, you do need to make the decisions without trying to discuss them with him.
    That was my Doctor’s advice. He is not able to make judgements and that causes frustration and anger.
    I too, find it very hard to make all due ions by myself.
    I do understand and my heart feels your pain.

  13. Maureen says:

    I am praying for you, Jim, and Frances and Brad. I am praying that you can live one day at a time. I am praying that you can turn your fears over to God. I am praying that you all can love your hubby and your Dad with your whole heart and soul. My children and I practice this on a daily basis. It works for us. My hubby feels good and is happy. He doesn’t know what he doesn’t know. He teaches us all how to live like I have shared before.
    xoxo Maureen

  14. Mary says:

    Karen, I would urge you to read this document: Understanding the Dementia Experience. Try to find time to read the entire document, but at least the section entitled “Emotions.” Here is a link: http://www.smashwords.com/books/download/210580/1/latest/0/0/understanding-the-dementia-experience.pdf

    Jim can’t control his emotions, but you can manage his environment to try and reduce his frustration. I sense you are expecting too much of Jim. I know how terribly hard it is to let go of the man you once knew and accept each new level of diminished capacity, but doing so can make a huge difference in the level of peace that you can find in the midst of this truly horrible situation.

    You and your children also need to appreciate that every signal that you give off (something as simple as a frown or wrinkled brow) will greatly affect Jim’s emotions.

    I know this is hard. I counted the days until my youngest was out of the house and off to college, so that he could escape the heartache, embarrassment, and anger he felt. I can imagine how hard it is for you and your family with your children so young. It is easier to cope once you truly accept that you cannot fix this; all you can do is manage it the best you can. That involves a lot of adapting, focusing on compassion for Jim, letting go of your dreams, and cutting yourself a lot of slack when the best you can do doesn’t seem enough. I hope you turn to the Lord as well – I could not imagine surviving this without Him.

    I think when Jim is expressing that he doesn’t want the dog, he is being honest. He wants to go back in time before the dog, before he stopped working, before this wretched disease destroyed his life. That doesn’t mean he can’t enjoy the dog’s company.

    Praying for you and your family.

  15. Janet says:

    Thank you Hope White. My mom started on a new med this past week. It puts her to sleep, which is no help, because the rest of the time she’s as mean as a hornet and lives in a make believe imaginary existence. The imaginary world isn’t so bad, but her anger is taking over. I’ll talk to her doctor about the med your family tried. Thanks again.

  16. Michelle Fox says:

    Karen, you know I support you. Somewhere in the tirades of this disease, you have lost, it appears, your compassion for Jim. No, you will not have the storybook life but how many of us do? This is the card many of us have been dealt. I would also encourage you to explore your faith as well as your long term commitment to Jim. If you do not have plans to care for him long term, and keep your family intact, I would suggest talking with your therapist about when, how, where is best for the entire family. You do expect too much from Jim. He is not the man he even was last week. My prayers are with you,my dear.

  17. Christy T says:

    Karen, You and your family continue to be in our prayers. When Don was having problems, we were able to find a medication to help with agitation / aggressiveness with Alzheimer’s. It really has helped Don. When you over in our area again, let me know and maybe we could meet for lunch again. Love you! Christy

  18. Karen, this breaks my heart for you. It’s also very enlightening to me, because I know very little about the disease, so I am so thankful that you are sharing. I will keep you and your family in my prayers. Love, Mariel

  19. Karen H says:

    Michelle Fox are you supposed to be a friend of Karen’s? Do you have young children and a husband with early onset Alzheimer’s ?

  20. Michelle Fox says:

    Karen H, my life is none of your business. Mind yours and let Karen take care of herself. She puts her feelings on public display and does an excellent job managing and coping. This is her choice to be public. End of story.

  21. Nancy Y says:

    My husband had early onset also. Although he was diagnosed in 2004, I know now the symptoms came years before. Like your husband,he was the easy parent, the one who didn’t fuss about the small stuff. We didn’t have children at home so his anger was aimed at me. He was never physical but he was hyper-sensitive to perceived hurts or insults and would retreat to basement family room and then forget why he was mad and that caused further confusion and fear. As this terrible disease progressed, he became again the sweet, caring man I married, even more so because the filter was gone. We lost him 3 years ago after a very rapid 3 month decline. We were able to keep him at home with help of family and Alzheimer’s services but was becoming increasingly difficult.You know your husband. You know, absent this disease, he wouldn’t want to hurt his children. Talk to your family, get the help you need and can afford from outside sources, and do what you think is right. There are no easy answers and, of course, it is unbelievably hard. Trust your instincts and love him everyday you have. Don’t feel guilty because you resent this burden, because you are tired. I constantly had to remind myself that he had larger burden and the disease was what I resented. Take care.

  22. Denise says:

    I can’t begin to tell you reading your latest blog the pain and sadness I feel for you. You are always trying to give others comfort in battling this disease and I hope you know that the frustration you are feeling is acceptable and that you are entitled to feel this way. I am always so grateful with your sharing because it makes others who are going through this terrible disease feel they are not alone.

    I don’t want to tell you what to do but let me explain a little story to you. Three days before Christmas my husband said to me he wanted to go to the shopping center which is only 2 blocks from our home. He said to me would it be ok if I take the care. Without thinking and perhaps part of me wanted to accept that he was ok, I agreed. I didn’t realize what I had done until I received a phone call from the Police. My husband did not go to the shopping center but instead ventured on a major blvd and went into the oncoming traffic. Luckily, he is alive and no one was seriously hurt. He totalled the car. I don’t know who I was more angry with, him for what he did or me for being in denial. I realized at this point that my husband will never be what he was and although I may get angry and frustrated which I do and maybe do often, I think of what the alternative would be and that scares me even more. With the help of my daughter, I enrolled my husband in a Day Program for Alzheimers patients. Yes, he was extremely reluctant, angry and constantly crying but I could not go to work every day wondering what, where and how his day was going to be. He is now in the Program for 3 weeks and at least I am somewhat at ease because he is being watched. I don’t know if you have any of these programs where you live but the Alzheimer’s Association has helped me find a Program. In addition, medication does play a very big role in their behavior. Many times not for the better. It isn’t Jim that you are angry with it is this disease. My prayers are with you.

  23. Glenda Wilkins says:

    I, too, am living in the middle of an altered world as my husband has Alzheimer’s. Diagnosed in late 2010. I experience many of the things you talk about. Have just made a decision to get a caregiver one or two afternoons a week. My mother died from Alzheimer’s related illness in 2009. A year later my husband got his diagnosis. I feel I am sleep walking through my/our life. Just today, I came upon your blog, and find it touching, with much of the angst I experience. It is not true that there is comfort in numbers, but sharing has its gifts. Thank you. . . . Glenda

  24. Cindy g says:

    Dear Karen, I can totally relate to all of your fears & sadness regarding Jim’s progressing EOAD & sadly for some ppl comes agitation & violent outbursts. My hubby who was only in his early/mid 50’s was diagnosed w/AD, going on its 6th yr now. Recently he has been suffering from random angry outbursts, hitting caregivers etc…. Prior to this he was the sweetest man, hubby, father, still is w/me but I have seen first hand how angry he can become to others & it scares me! :(. He is living in a care facility, I made the decision after being his 24/7 caregiver for 4.5 years that I could no longer give him the care that he deserved. What made me realize that he needed to move & have professional help was that our children was suffering too, seeing their dad’s decline, accommodating his random outbursts, sleepless nights as he paced & wandered at all hours of the night, safety had become an issue at this point. It’s been a year since he has moved, we can now visit him & our visits are pleasant. I miss him so much & love him w/all of my heart, I’ll remain his rock but resolved to the fact that we can no longer take care of his needs on a 24/7 basis. Take care Karen, only you will know when it is time for you to find placement. Hugs, Cindy

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