Thanks for asking.

 

Bradley sitting on the porch as I am leaving...

Bradley sitting on the porch as I am leaving…

Since there are what seems like a million different stages of Alzheimer’s Disease I want to keep you up to date on about where Jim is in the progression of the disease.  I have someone ask me a couple of times a day, and I honestly haven’t figured out the best reply.  What to say?  “He is maintaining.”  A slow, steady decline that is difficult to see with the naked eye. “He is good.” Compared to what? Someone further along? Not good compared to who he was. “He is doing well considering.” Considering what? That he has Alzheimer’s? Just not the answer I would hope to have in my arsenal.

Don’t get me wrong. I am glad people ask. It is a way of showing they care. They are concerned. They have no clue what else to say. I am just as guilty. I know what an awkward moment it is trying to answer this simple question. Yet I ask this very same question of others in similar situations. It’s just what we do. And it is ok. Keep asking. Eventually I will figure out the best way to answer you honestly and eloquently. Just understand that sometimes I have no idea how to answer you honestly without collapsing into a long soliloquy.

Hmmmm. How is Jim doing? He is freaking fantastic. He gets up every morning. He gets dressed. He feeds the cats and waters the plants. He fixes breakfast for the kids. He writes lists of things to do and does a really good job of following the list. One day a week he will go grocery shopping. (That is a whole other story) One day he will work in the yard (that hedge usually needs something done to it.) One day he will vacuum and clean a bathroom. One day or two days, I have no clue what he does all day. I come home and ask him what he did and he looks at me with a far away glare and says, “I don’t know.”

Now, how am I doing? Good question. Sometimes I think I am doing really well. Then I come home from work and I see that Jim did the bathroom. That is great. I want to put it on the record that I am thankful….BUT…..he will have spent 3 hours (literally) on the bathroom and when I walk in I can tell that the tub isn’t clean, the toilet isn’t clean, the floor isn’t clean and one sink might be. Just so you know, I am really not OCD. I just think that something shouldn’t have hair, dirt and debris on it once it has been “cleaned”. This is the same for vacuuming. And for the yard. (I’ve started to notice lines in the yard where someone ,I won’t name, has missed during mowing.) Dishes that are “done” aren’t really clean. Or put away in the correct place. Last week dirty laundry was put outside  on our picnic table in the basket. Not sure why. I know I need to be so grateful that he is trying so hard and still able to do so much. BUT….I would really like to get rid of the ring starting to build in my tub and I would really like a yard with no weeds. You may think I am expecting too much. I think I am expecting too much. Maybe I am. Jim has said it himself. “All I am good for is dishes and laundry.” How do I keep up the house and keep him feeling like he is doing a great job?  I feel like a dictator in a land that should be socialist. I know I am not alone……

You may ask, “Well, Karen, what are you  doing to help?” Good question. I ask myself that everyday, many times a day. I get up and once or twice a week I leave before Jim and the kids are up. On the days I am still here when they are up I am getting ready while he is fixing breakfast and starting the day. Most days I start a load of laundry or switch out laundry. I add to the grocery list or to Jim’s list for the day. I go over the kids schedules with them and remind them of their chores. All while gathering my work stuff and my chai tea and my banana.  I am usually walking out the door as the kids are eating. It is painful. One of my least favorite things is leaving my children every morning. They both come out on our front porch, no matter the weather, and wave good-bye to me as I drive away. EVERY single day they ask me when I will be home. It tugs at the old heartstrings. But, I drive off to start my day of meetings and appointments and well, my JOB.  Sometimes I am fortunate and can stop by the house for lunch. I can answer questions and help out. Most days I am gone for the entire day. That is when the fun begins. The phone calls from the kids or from Jim. Questions on what was on the grocery list, what the kids can or need to do, letting me know what they are doing, asking when I will be home. There have been times I have been driving down the interstate helping Bradley with his homework while trying to prepare for a meeting. Keep in mind, Jim is there, at home, with Bradley when I am helping with his homework. Also keep in mind that Jim is a MUCH smarter person than I. There have been instances where the kids call to ask me if they can do something and I will ask them where their father is. “He is right here.” “Then why are you calling me and asking me if you can go outside? What did he say?”  “He said he didn’t know, to call you.”

Last week I had a large work event that needed my full attention through most of the afternoon and into the evening. Frances had a softball tournament about 40 minutes away. Brad had baseball practice. I gave specific instructions to Jim to find her a ride and to make sure he knew who it was so he could tell me. During my work event I called Jim to ask how everything was going. “Fine. Bradley is at practice.” “Where is Frances? Did you find her a ride?”  “Yes. The tall lady with dark hair is giving her a ride.” “What? Who? Who is giving her a ride?” So, here I was, trying to keep my composure in the middle of this work environment while completely freaking out on the inside.  I started calling the Moms on the softball team and found out quickly who had Frances and was giving her a ride. But the fact that Jim had no clue other than that description was really unsettling.

When I get home from work, I usually have less than 1/2 an hour to either fix dinner, change, give some orders to Jim and the kids or follow up on some bill or paperwork or appointment before heading back out the door for either softball practice, baseball game, swim meet, work meeting or SOMETHING.

I am usually home for good by 9 or 10 o’clock. At this point, I try to relax (not really), check e-mails, eat, go jogging or walking with a friend or once every 3 weeks watch something on tv.

Maybe I am the quentissential working Mom. I don’t feel like it. I feel like the quintessential loser Mom because I am gone so much. I am so busy. I am always focused on what hasn’t been done and what needs to be done. Where is that Mom I was going to be? The Mom that never yelled and had time for projects and had time for field trips to museums and parks? Wasn’t I going to take the kids to Monticello by now? Weren’t we going to go pick peaches two years ago? Shouldn’t I have re-done the kids’ bedrooms by now?

Yes, on one hand, Jim is fantastic. He is looking good (a little thin for my liking) and he is helping out.

On the other hand, I am so frustrated and lonely and worried.

So, thank you for asking. I think I have answered your question. Now, when I ask you the exact same thing, please  just tell me everything is fantastic. Or tell me the truth so that I will know how to answer the next person that asks me.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (20)

20 Responses to “Thanks for asking.”

  1. Diane says:

    I am getting ready to face a big challenge myself. My mom has AD and my sister and I became her 24/7 caregiver when dad went into hospital unexpectedly. He is now In assisted living, mom had been in respite care while we went on vacation. As if I did not have enough on my plate my husband took a tumble down some concrete and broke his hip. He had surgery on Monday and is still in the hospital.. Mom was able to be moved to the same assisted living dad is in today….my brother, sister & nephews helped get her settled. My time will be spent getting hubby back healthy and visiting mom& dad as I can. You never know what tomorrow may bring. My husband has been so helpful while my sister and I took care of on for 9 weeks and now I will be doing it all. I am thankful he could help when he did. I don’t work full time and our kids are grown but now it is my turn to help take care of him 24/7 for about 6-8 weeks. I know I will be frazzled…we have 3 out of 4 grown kids close by so they will be able to help. I know what you mean when someone asks about your loved with with AD. How do you answer that question? For a while we could answer she is holding her own…now it is a slow decline that you can’t see unless you are with them every day. AD is awful that is all I can say about it. Hang I there your kids need you and so does Jim. Praying for your family.

  2. Lynne says:

    Karen it is eerie how close our stories are for our husbands’ present condition. I could have written this, word for word, about how my husband is when people ask. Same issues, same things I notice, same weird behaviors. My only saving grace on all this — I’m not also raising young children like you — mine are grown and married. But my job is demanding, I travel, and I have the same misgivings about being away late. And I’m tired! All the time. My heart is with you, and I think about you every day.

  3. Lee Ann says:

    The people in your circle that ask how Jim is doing, really dont want to know how he is doing. They might be asking if anything acute is going on. If he’s not in the hospital, not taking antibiotics, assume they want to know he is fine, nothing new, nothing tragic. The people in your close family ask because they want to know and they want to know how to help. So those people are the ones to pour out your heart to, your support system. And I still say you need to find an AD support group. They will all be in the same situation as you, or were in that situation in the past. The people who will really be good to vent to are in that support group. So please think about checking into it. Some groups are on Saturdays or Sunday evenings.

  4. Molly says:

    I think you are doing fantastic! You totally amaze me. My husband is still the bread winner and helps with the kids but I still wonder what happened to the fabulous mom I was going to be. I get mad, frustrated and cannot stay on top of things. Just know that when you feel like you are not the best mom, wife, friend or whatever you are really doing a super fabulous job!! My prayers and thoughts are with you.

  5. Amanda says:

    I’m inspired by your continued strength and optimism. Your family is climbing one hell of a mountain right now, but you’re doing it with grace and Jim sounds like he’s doing fantastic in light of the circumstances. Regardless, I know it can’t possibly be anything remotely close to easy. Thank you for sharing your story—surely you are giving hope to so many others in your situation. Hoping and praying for an easier future.

  6. Jessica says:

    It sounds like you are doing your very best with what has to be an incredibly frustrating situation. I hope you will not try to measure yourself against some mystical standard of what you should be doing. Just keep doing your best, and know that it is more than enough. Hugs to you.

  7. Ginia says:

    I cannot begin to imagine the frustration you’re going through- but know that you are an inspiration to so many that are going through similar trying times. Sending you love, light and prayers that things will start to be easier for you!

  8. Alissa says:

    My grandmother had AD so I completely understand how frustrating and sad it can be. The man you loved is there sometimes and sometimes he’s not. AND if we are lucky enough we get that spark, that light, that let’s us know that our loved one is still in there. You are an amazing strong woman, for your wonderful husband and your beautiful children. I’m sending prayers and love!!!

  9. Jenna says:

    Having a grandfather who dealt with Alzheimer’s, I can tell you that my Grandmother had a lot of the same feelings you have, of course without dealing with school-aged children. People would ask…but how to respond? Eventually, I told her that I felt while were asking about her husband (also named Jim), really they wanted to know how SHE was doing. Alzheimer’s is a horrible, emotional disease because of how it messes with the mind – it’s just as hard for the loved ones as it is for the one affected by the disease. Take everything day-by-day, knowing you’re doing the best you can for your family. Lots of love and good thoughts to your family. I wish you all the best.

  10. Gail Glasser says:

    Sending a prayer for peace, calm, grace. Onward you go as life spins around you in chaos. You hold it together with love, humor, frustration…duct tape. Whatever. You bring new meaning to wonder woman. Breathe. Lean on others. Love Bombing ya from NY.

  11. Tina says:

    Your story tugs at my heart. My mother went thew all of this. She was in her early 60s. I’m truly sorry. I would be willing to offer you some help. Not sure where you live but please email me. I know this is very hard. Tina Tocco

  12. Christina says:

    I don’t know what it’s like to be a full time mom or a full-time care taker for my partner – let alone both! And working and bread winning, too! You sound basically like Wonder Woman to me. We have a saying in Minnesota, “Oh, ya know, you do whatcha do.” 😉 You can only do what you can do in a day. The rest will sort itself out. Wishing you and your family peace and happiness on your journey!

  13. Joan says:

    I applaud that you are able to write down your feelings as you try to make sense of all that has happened to upend your life and the lives of your family. I sense that if roles were reversed, your Jim would do for you as you do for him You verbalize what many people in this country are dealing with on a daily basis and I realize that there by the grace of God go any one of us. I only hope that the memories of the years you had before sustain you and your whole family in the years ahead. Thank you for sharing your story with the rest of us.

  14. Mary says:

    I have no words that will give you a proper response to those questions or that will give you peace of mind. But I will be praying for you, for your husband, and your family. I hope you have many fantastically amazing days ahead to recall down the road. Prayers and hugs from Green Bay, WI.

  15. Lesa says:

    Oh Karen…this breaks my heart. We’re watching as my grandfather goes through these awful stages, but your situation is so much harder! I can’t imagine what you’re going through, but I can pray, and I will do that. Keep loving him like you are doing! :0)

  16. Michelle Fox says:

    Karen, I can answer your question. Jim is doing as well as he can considering the disease process and progression. You are doing well and trying to support his decline although it is difficult and frustrating at times. This is it in a nutshell. It is not going to get better only worse. You will have to continue to adapt and before long you will be living a completely different life than you are now. Enjoy this stage. My mom was just placed in memory care after a fall and pneumonia and this is beyond rough. I pray for you and the kids. Jim’s destiny is in front of him.

  17. Petra says:

    Ahhh Karen, I believe it’s dam fine to get those frustrating moments. And my gosh you are an angel. You are not only writing this blog for you – you’re right, others are listening. You have such a good heart. I hope you have found a faith in something for your moments ahead. You make a difference. Bless you and we send out our gratitude for you.

  18. Lyn says:

    Thank you Karen. You hit the nail on the head. Your Jim is my Michael. Diagnosed 3 mos ago before he was 60, I have seen the symptoms for 3 years. My husband told his 3 other siblings. His 57 yo brother was tested & was diagnosed w/ AD as well. My husband is a lawyer & a college professor. I am a nurse. Family member call us for everything. I am the primary contact now for my sister-in-law who is struggling as much as I am w/ this debilitation illness. I listen – she talks. She cries. I cry later. I never tell my husband. I am the sole caregiver as is my sister-in-law. I can barely get out of my own way, let alone someone elses, yet it is what it is. I too miss my Michael. I miss me. My “anticipatory grief” if overwhelming when I think about the future. Your children are indeed more work, but they keep it real. My grandson keeps it real. I remember Michael for who he was, love him for who he is, & try to be patient with him for who he is becoming. I am frequently a failure at the last one. You keep blogging because I can’t……

  19. melly says:

    sending love to you today. so much.
    (lovebomb!)

  20. Penney says:

    When people ask how is Steve, I’m honest and speak briefly about the decline because awareness is important to me. When people ask how I am, I tell them I don’t know how to answer that. Sometimes they nod with understanding, sometimes I can see relief on their face for not having to hear about my hardship.

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