Accepting our fate?

“BRAD TOLD ME HE WANTS TO BE A CHEMIST. I WENT OVER OPTIONS FOR SCIENTIFIC JOBS IN CLASS AND HE SAID IF THE BASEBALL THING DIDN’T WORK OUT, HE WAS GOING TO BECOME A SCIENTIST AND FIND A CURE FOR ALZHEIMER’S DISEASE.”  —Brad’s teacher at Back to School Night.

One night this week I had to work late. I didn’t get home until almost 9:30, after working since 8 a.m. I was tired, I was wanting to relax and I was a little hungry.

Frances was still awake, as usual. She wills herself to stay awake until I am home and she wills herself awake in the wee hours of the morning to see me before I go.  As I went into her room to kiss her goodnight and check on her, I realized I was worn out and just wanted to go to bed myself . Brad was sound asleep. I go back downstairs to unwind a little. I hear Frances go to the bathroom. A minute later I hear her calling me upstairs, telling me something is wrong and I need to come up right away. I immediately have thoughts of blood and a possible need for an emergency room visit.

As I am coming up the stairs, she tells me the sink exploded. As I get further up the stairs, she changes to a story of not the sink, but, just come see.

As I turn into the bathroom, I look at the sinks and nothing. She points to the cabinet. “Look, there Mom.”

What the Hell?

The shaving cream Jim uses and puts on the very top shelf of the bathroom cabinet had exploded and there were 3 shelves with fluffy, light blue foam all over them.

She tries to tell me she didn’t know what had happened. I can hear in her voice that she is worried I am going to be upset. I can tell she is scared for my reaction. I tell her it is ok and to go to bed. I thank her for telling me. Inside, I am completely aggravated.

10 feet away our bedroom door is wide open and I know Jim just went in there. I know he can hear our exchange. I know he knows I am cleaning up this mess. I am really frustrated that I haven’t been home 30 minutes from a very long day and I am cleaning up something he knew about and didn’t recognize to do. Frances had told me it was like that earlier. And I know Jim had just been in there before he went to bed, after I got home.

What can I do? I clean it up and head back down stairs. Trying not to be upset with the fact Jim is in bed, relaxing, as I clean up the shaving cream and never bothers to get up and even offer to help. The fact I am hungry and exhausted and just plain worn out seems secondary to all that needs to be done around the house. How in the world will I ever find the energy or time to get this house cleaned up?

The same scenario had unfolded just a couple of days before when Frances broke a glass on the kitchen floor that was full of ice water. Jim sat at the table, eating his meal as I tried to clean up wet glass. Again, my insides were churning. An impasse has come and an impasse has gone. I think.

Mixed interchangeably with the frustration of having to clean up a mess is the realization that someone who normally would be beside you to help is sitting on the sidelines watching; with little reaction or recognition of the situation.

I am growing as a person. I am not questioning him about it. I am not yelling, I am not even mad.

And I know that I am subcoming to the disease too. I am losing my hope. I am losing my fight.

That is sad. To lose hope and to stop believing and fighting is a sign that you have accepted the outcome. That is very distressing and uncomforting.

So, I continue to fight. But not with Jim. Not with the disease in my home. I will fight this disease on an even playing field. Where it counts. Raising money, raising awareness and fighting for research and help with care.

Please join me in the fight.

Please make a donation to my Walk to End Alzheimer’s Team.

Click HERE to donate.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)

14 Responses to “Accepting our fate?”

  1. Marsha Carpenter says:

    It is so hard to clean up what they don’t remember they have done, For their empathy to fade into nothing. While you are exhausted & wishth for sleep or even a little food, it goes on. And you will go on. As I do, as all of us do. We stretch ourselves a little longer, a little farther and we wish for strength. No your not mad, your angry at this disease that fights you no matter how hard you try. I pray for you every night because I am way ahead of you in this walk & know everywhere you have been because I have been there. Know that there are so many of us that care and walk with you. Your children are learning a lesson in life that some never learn – that you have to help, that you must be there for your parents. Trust me, this will be hard for them but someday they will look back with comfort and pride. Please stay strong. I am in your corner, ever inch of the way.

    • Maureen says:

      Hi Karen thank you for your post. Acceptance has resulted in an amazing way of life for us! It is not giving in or giving up. It is a way of coping under the circumstances. And it is ok and it offers us daily peace and serenity one day at a time. We laugh, I cry, and we celebrate what we have. I often make a gratitude list thanking God for what we have and not what we don’t. We are shining examples to our children everyday. They watch how we handle things. And, they know what love, support, perseverance and integrity are all about! I can’t express how thankful I am for sharing your journey! I love my hubby with all of my heart!

  2. Lois Keller says:

    Marsha made a wonderful comment, and I want you to know that I also am in your corner, fighting. Being aware of all these feelings, and why you are having them, will make you a better caregiver. Stay tuned to that, reach out when you need to.

  3. Laura says:

    I thought it. YOU SAID IT.
    Your children are so brave and wiser beyond their years.
    Thank you for posting. Your journaling helps so many people through this journey.

  4. Wendy says:

    I have cleaned up different things in our house that in the past Dan would not have overlooked. It is another reminder of how lonely this life can become.
    Best of luck on the walk, we were blessed to have our daughter and our other daughter’s fiance walk this past weekend.

  5. Bakhus says:

    I know on this journey you learn to not get Upset not an easy thing to do. I learned you end up feeling guilty and in the end you are hurting yourself. By learning this I found in my everyday life outside of Caregiving you do the same thing Don’t get upset when there are times you need to get upset to get a point across Your doing great Karen

  6. M says:

    Some how our freezer in the garage has been ducted taped shut…response from my husband when I asked if he did it…I thought you did it… I have post its all over…don’t sweat the small stuff but there is sooo much small stuff I may lose it. In the three years I don’t think anyone has asked me how I am doing… I am tired, I am sad, I am mad… I am walking to End Alzheimer’s next Sat. Good Luck and thanks for posting…it does make me feel better to know I am not alone.

    • Lee Ann says:

      M, I used to work in a special care unit, and I bet I know why the freezer was duct taped shut.. I once took care of a resident who was so upset that the refrigerator didn’t have the latch, like they had in the old days. He worried that the door would open and food would spoil. I bet your husband was fearing that without the latch, food could get warm and spoil. It doesn’t help much, I know, but there is usually a reason for their behaviors.

  7. Diane Chadwick says:

    I know how exhausting this can be…..my mom has AD and we moved her into an assisted living facility nearby. My sister and I check on her and her room always looks like something exploded. They was her clothes and she just stuffs them anywhere….we are not really sure if they are clean or dirty because they are so wrinkled. My dad is in the same ALF but wants to come home because he tries to care for mom 24/7 even though he does not have too. We can’t make him understand it that they will take care of her IF he will back off. Now on top of this stress I have a detached retina and have to have surgery on Wednesday and will be out of commission for a few days. My husband is taking care of me but sometimes you just want your mom but she has no idea who I am most of the time or would have no idea how to even comfort me. This disease is awful…..I have donated for the in our area, I can’t walk this year due to my eye but hope to be able to walk again next year. Hang in there, as M said ‘Don’t sweat the small stuff”.

  8. Lee Ann says:

    Karen, everything looks worse when you are tired and hungry. I hope the light of the next day, you are feeling better. The weekend is here. Take care of you. Take your daughter and get manicures, or go for a walk, everybody needs a little “me” time. Your kids AND you. Sometimes if you can get a bit of rest and relaxation, things look better. You get some wonderful advice in the comments.

  9. Karen, you are truly amazing. Look at all you’re doing… wife, mom, caregiver, full time job, running a household, darn near full time ALZ advocate/activist, blogger, and I’m sure I’ve missed some others. I honestly don’t know how you do it; you’re an inspiration to me and thousands of others. Thank you for that.

  10. Sara says:

    Karen, I am going to give you different advice than the others have posted. And you may not like it. But it is time for Frances to step up to the plate and help out. She knew there was shaving cream everywhere, why did she not clean it up for you? You cannot do everything by yourself, and it is not unreasonable for your son and daughter yo help out.

  11. Lynne says:

    My advice is different too. Ask Jim to help you. My husband is the same–he doesn’t recognize what he should do when I am struggling right in front of him. But if I say to him Please help me with a specific thing, he will. The hard part is stopping the expectations we are carrying with us from the past.

  12. Shannon says:

    I remember visiting with my mom one day. She complained that none of my siblings ever called. I took out my cell phone and dialed her number. When her phone rang, there was no recognition on her face. She didn’t hear the phone ringing, or she didn’t hear that sound and connect it with the need to pick up the phone. There just wasn’t a connection any more.

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