Younger Onset Alzheimer's, frustrations

Visiting Mount Charleston, NV 1996.

1:43 p.m.  What time do I need to pick Brad up from school today?

1:45 p.m.  Does Brad have Odyssey of the Mind today after school?

1:50 p.m.  I am sorry to bother you. What time do I need to get Brad up from school?

In the past few months, this has become the norm, not the exception. The norm. It is now the exception if Jim remembers something. It almost calls for a celebration.

Since he has started to decline more and more as far as short term memory, more friends and acquaintances have noticed a change. Just tonight someone asked me if his leg was ok because he seemed to be walking different. Yes he is. He is now doing an “old man shuffle” as I call it, most of the time. PJ’s are usually on by the time I get home from work. He says they are comfortable and I have no argument. Yep, pajamas are nice at 5:30 p.m. Wish I could put them on and relax for a night.

I hate Alzheimer’s Disease. I hate the fact I have no control over our destiny. I hate the fact that no matter what I do or how I do it, nothing is going to change. I hate the fact that I lose my temper. I hate the fact that I am so busy that I am seldom around for the kids when they really need me. I am working. I am working. I am working. I always seem to be working. Again, I am so grateful for having a job, but sometimes the 8- 5 grind doesn’t gel with the Alzheimer’s Disease/Kid meltdown/Life agenda. Plus I have a job that requires some nights and some early mornings. When my kids are both crying for me to stay home and telling me they don’t want to be left home with Dad, I am torn. I am torn because I want to stay. I need to work. I want to be there for them.  Yet we have bills and need my paycheck. It isn’t fair to Jim that they feel this way because I know how awesome of a Dad he is. He was. But I can’t. I can’t stay and I have to leave. I am a torn, broken woman. I think my dilemma is similar to that of a stay at home parent. Except my spouse is living with us. And instead of learning from mistakes like children usually do, my spouse is repeating the same annoying stuff. And we are supposed to understand and be patient and carry on like nothing is wrong.

I sometimes see other people who seem to have everything so easy. I know deep down this isn’t really the case, but when life is handing you lemons, it is hard to see how to make lemonade. It is getting harder and harder to keep the REAL Karen alive. The exasperated Karen seems to be pushing her way to the surface and I am trying so hard to not let her out. Now the smallest things become HUGE difficulties to deal with. The cable company screwing up. A birthday party coordination. Just trying to keep up with paying bills and going through the mail becomes tasks that should be congratulated  when done. Yep. I congratulate myself often now for things that were so simple, routine and easy just a year ago. Then if you throw in anything extra, like an oil change, coordinating a play date, a scam artist calling the house, changing any part of the daily schedule; it all becomes a huge undertaking.  Something so simple and easy becomes completely overwhelming, daunting and a burden that is almost insurmountable. It is insane how this happens, but it does.

Frances told me tonight,” Sometimes you seem to get upset with every little thing that isn’t done right or needs to be done. And sometimes you just don’t seem to care. We need to find a happy medium.”  Yes. She is correct. Yes. She is going to be 13 on Saturday. And YES, I am very proud of her. She gets it but that doesn’t mean it is any easier for her. I am trying to find that happy medium. But as I am constantly being pulled in so many different directions while watching Jim observe from the sidelines, I am struggling to get to that place. I know I can. I want to. I am trying. But, it sometimes appears impossible. But nothing is impossible if you are willing to try and want it bad enough.

It makes me so sad. There is no longer any input from Jim. He struggles each day just to follow his list and to follow a conversation. Sometimes he seems to be fine, but those moments are getting rarer and rarer. And that makes me sad. Even though I am aware of what is coming, when these stages hit, knowing what still lies ahead only makes me guilty for not appreciating what he still can do now.

I am a proud woman. I am a proud woman that has to accept help. I am a proud woman that has to accept sympathy and knowing looks and suggestive comments and do it with a smile while being gracious and grateful. Yes. I am grateful. For so much.  So very much. But just because I am grateful doesn’t mean I  cannot be resentful. I am resentful that I am not able to live up to my potential at my job. I am resentful that I am not able to be a better mother. I am resentful I can’t keep my house clean or clutter free. I am resentful that I no longer have a husband in the sense of the word but I am still married. I am resentful that my children live with their father but he cannot be the Dad that he is capable of being. I am resentful that we worked so hard on our marriage for so long and now our relationship is a joke. There is no communication. There is no intimacy. There is no support. There is no acknowledgement of anything sacrificed or done on behalf of anyone. I am just done. Done with it all. But I can’t be. I will get up, fix a meal, clean, work, check homework, drive to practice, work, and sleep. Sleep is my friend. And my enemy. When I sleep too much, I don’t get enough done.

It is a bitter time in my life. I never knew how strong I could be or how strong I would have to be. I am realizing it now.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized and have Comments (12)

12 Responses to “”

  1. Chris says:

    I’m right there with ya, sister-actually about 6 months ahead of you. My husband is no longer allowed to drive, but he doesn’t understand why. He can no longer stay alone, but he doesn’t understand why. Our son came home from school last week and his Dad was standing in the driveway in his underwear…and yes, it’s about 15 degrees outside. My idea of doing something special is now a long hot shower with no interruptions where I can wash my hair, bathe & shave. That is now a treat! And yes, I still get up every morning and get one off to school and another off to adult day care where he “volunteers” because he doesn’t understand why he has to go there. I’ve quit trying to keep up with everything. So, the house is messy, the mail is piled up, but my family is safe and with the exception of Alzheimers & Aspergers, my family is pretty healthy. I have to celebrate the little things I once took for granted. It is what it is and I’ll deal with it with a little help from friends, family & prayer…have faith…there is a Plan…

  2. Shirley says:

    Karen, again you have hit the nail on the head! Exhausted is the word! Not tired! I am starting a week’s vacation, if it can be called that and my main task is to husband proof the house. I work at a daycare and found myself comparing him to a two year old and find many similarities! It was very hard! Also hard when you find yourself making excuses not to come home! I can only imagine how much more hectic it is with kids at home! All mine have left home and are living their own lives! I should be happy but it feels so lonely…empty nester in every sense of the word! But life moves on and so must we all! I have put it in God’s hands and pray to make it till bedtime! Praying for you and all of us who are walking with our loves thru the valley of the shadow of Alzheimer’s disease!

  3. Kylie says:

    I have no idea what you are going through Karen but I do know that you are a strong and capable person who I see coping amazingly well with this horrible disease. Every day you come to work and focus on your job and do it extremely well. Sure, there are times that the little things might seem huge and a bit of a temper comes out :-) but I can understand why. What you do for your children and for your husband is incomparable and yes, be proud about what you are achieving every minute, every hour, every day. You have my respect.

  4. Mary DD says:

    Your words resonate with me especially, “I am grateful but that doesn’t mean I’m not resentful…..” Lots of wisdom there that I can mull on for months. Alzheimer’s is a disease that doesn’t live well with the word “hope”. I believe that because of this I must find the small glimmers of hope each day. Caregivers (people like us) are making a huge difference in the lives of those we love and in the struggle, we are learning to truly care and love ourselves. The most difficult part is to stay in the present moment… my prayers are there with you. Inhale, exhale, breathe…. that is what we learn…stay in the moment… everything else makes us overwhelmed, stressed, resentful and just plain frustrated. I try to remember all those 15 million caregivers out in the world and realize we are just doing the ordinary in an extraordinary way or maybe its the other way around– not sure because Alzheimer’s turns life upside down and around. Thank you for sharing your journey in such a meaningful way .

  5. Kimberly says:

    Once again your blog reflects so many of my own thoughts and trials. It is so exhausting day in and out, the sadness, anger and loneliness. My 13 year old son tells me “Mom just calm down everything will be ok”, but it just seems so overwhelming and complicated at times. I can see how my boys are also affected by watching their Dad slip a little further away. All we can do is take one day, sometimes one hour at a time. Thanks again for sharing.

  6. Mary says:

    My heart goes out to you, Karen. There is one point you mentioned that you may be able to fix – “a scam artist calling the house.” If Verizon Digital Voice is available in your area they have a “DO NOT DISTURB” feature that is included in the phone service. You can establish up to 10 numbers that are allowed to ring through to your home phone – all other calls are routed to a Verizon voice mail box. You can play those messages anytime from any computer after logging in to your account. This solves the problem of scammers getting through to your husband and getting vital information. If you have another phone service perhaps they have a similar feature. Just a small piece of mind but every little bit helps.

  7. Diane says:

    Karen, I have followed all of your posts and have noticed a recurring theme. Jim is always in the background and you are complaining about what he has done. You should be making time for him and teaching the kids about creating special moments with their Dad while they still can. The music lessons and sports will all be there in the future but he won’t. Stop worrying about the running around and make some time for family. I have been there as a caregiver twice already and I know that after they are gone all you will have are the memories that you create. You don’t want all the memories for you and the kids to be negative ones. Sometimes the simplest things can be enjoyable when you do them together.

  8. Beth says:

    I have followed your blog off and on. Sometimes, I find myself having to refrain from reading because I become upset. Upset that you are so frustrated because your perfect little life hasn’t turned out so perfect. Well, what about Jim’s? He’s getting yelled at for not following his list, asking too many of the same questions, not being able to do as much today as yesterday. I have to agree with Diane. Stop worrying and gripping about what you don’t have and start enjoying what time you do have left. It’s suppose to be about making memories with him, not s daily journal of what you have missed out on.

  9. Michelle Fox says:

    Wise words dear Karen. I hear and read in your voice, you are losing it. It is not a bad thing to possibly accept that you cannot handle this and think about what is best for your family as a whole…placement in AL for Jim and let him love with people that are like him now and his frailties and decline is a normal progression. He will never fit back into “your world ” as much as you want him to. This is not a positive, nurturing situation for any of you. I understand. Please do what is best for all of you. I was quite disturbed when reading about your suicidal attempts, not that you would again but knowing that you deal with much depression probably before this disease ever came into your life. I am praying for a guiding path. I am on your side <3

  10. Jessica says:

    I relate to all your feelings in your blogs. I read some peoples above “judgy comments”. If you and I could be so “perfect” ad them. If the world and Alzheimer’s just didn’t get to us and we could just let it roll off our backs. The point is instead of theses people making comment, you want to help ?? They should get out there and advocate for respite for caregivers. Get involved in their community and volunteer. I have a mom with Alz. It is very hard to work, keep a somewhat ” norm” life for my kids- they deserve an outlet or time alone for sports to have a break from Alz. No instead our society blames. Stands on the sidelines and preaches. Thanks your preaching helps so much!! My moms friends and family don’t help don’t call nothing they have already written her off as gone. But society has more important things to put in the news and worry about. Million $ glorified, worshipped football players with concussions because shock and awe repeated hits cause concussions and damage to their brains. Lawsuits for their suffering. What do people thing if the repeated hits every second of he day to someone’s emotional well being to care for , watch take over and watch an Alz pt and the caregiver and family deteriorate. Of course who wants to ?? Who really wants to feel those feelings. Where is the headline news stories? Public outcry support or funding for Alz and caregivers. This world is depressing. My situation is depressing all I see are messed up priorities and morals. I do not see any caring and support for my family or myself. I know what that does to a person and I see that reflective in Karen as well as myself. You can a stand there and judge and preach I hope you are never in the position we are in bc u too will feel the same and realize oh now I truly understand. One day one second at a time Karen.

  11. Michelle Fox says:

    Jessica, I have been living with Alzheimer’s disease with my mom for 12 years. I know this life and live with much depression. I care very much for Karen and her family as well as any family fighting this horrible, terrible battle. We all feel the same, on many, many levels.

  12. Ginger says:

    Karen, I just read one of your recent posts about Jim doing the “old man shuffle” and while I know you have a diagnosis of Alzheimer’s, I am wondering if Jim might also need to be checked for NPH – Normal Pressure Hydrocephalus. A friend of mine did this old person shuffle, and several doctors had diagnosed her as having Alzheimer’s and the family just kept insisting that is was something different. They finally did the test and determined she had fluid on her brain and once a shunt was placed, all her functions returned to normal. I realize this is probably not the case with Jim, but also felt the need to share, because what if that is also a contributing factor. You may already know all about that, but I would feel so badly if I did not share that information. I appreciate your blog and your honesty about this. It gives so much insight into what is might be like for any of us to live with and care for someone with Alzheimer’s.

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