A Day in the Life

 

Frances and I  April 2002.

Frances and I
April 2002.

“Um…. I…. Um.…Did you….What am I….. Uh… I….uh.”

“Yes, Jim. Go ahead.”

“Uh, the front. Uh…. do you want me to….ummm….the front.”

“The front yard?”

“Yes.”

“What?”

“Uh, the uh part like a fur collar….Uh. Mmmm. By the flag. Like a collar. Uhhh…fur collar around.”
“The boxwood hedge?”

“No.”

“The liriope?”

“No.”

“The part,….uh, the part….fur. Fur collar. Um….Around……Around the uh, around the front tree.”

“The liriope is around the tree. That must be what you are talking about. The stuff that looks like long grass?”

“Yes.”

“That is liriope.”

“Do you want me to trim it?”

“No. You do that in the winter. You did it in Feb.”

“Oh. Ok.”

Another conversation that shows Jims’ decline. Another heartbreak. Another slip into a future that I am not looking forward to and don’t really want to live through.

Another frustrating situation for both of us. He is frustrated trying to explain himself and I am frustrated trying to understand him. The kids are frustrated. We joke that it is a game of charades, but you can only laugh so much at the fact your father cannot explain a simple thought to you.

I am in a constant state of despair. I just don’t have any answers and I don’t have an easy way out. I don’t see anything that will make this plight an easy one. An uneasiness seems to haunt me. Finances. The house. The yard. The kids. My job. Jim. His decline is on a more steady course than in past years. It is noticeable. It is impossible to ignore. There is a feeling that stays with me now; it is unshakable. A feeling of being in trouble. Like when I was a teenager and I knew I had done something wrong and it was only a matter of time before my parents found out and I would soon be in trouble. No matter what I am doing, who I am with or where I am, a sense of imminent doom looms overhead.

Brad and I  April 2008

Brad and I April 2008 Thank you Patti Brown for this perfect photo.

What have I done? What can I do different? How can I get out of this and save us from the terrible future ahead? What am I doing wrong? Should I have gone back to work sooner? Should I have saved every penny we ever made? How am I going to take care of me and the kids? How am I going to take care of Jim and work full time? What kind of person will I be when all of this is over? Will it ever be over? What kind of person am I for thinking this? I am horrible. I should not be thinking about me and my future. I should only be thinking of Jim and the kids. But, what am I going to do about the kids? What if the kids get this one day? Oh God. No. Please. Please don’t let my babies get this. I couldn’t take it. I would rather die than watch them succumb to Alzheimer’s. I might as well quit right now. I have to do something. What can I do?

Talk Karen. That is about all you are good at these days. Talk.  Get everyone you know to write their Congressmen. March up to D.C. again and don’t leave until they have a cure. Move to D.C.  Start a war like they have never seen. Wait. I can’t do that. I have to take care of Jim and work and take the kids to practice. Ok, then get everyone else to do that too. Will they? Will others care that my kids, my life, will possibly be taken from me when they are older? If they were getting this now, when they were young, people would care. But they will still be my little ones even when they are grown. They will be all I have left. Why can’t everyone see that? Why can’t everyone in the world stop and listen and care? Why can’t some really rich billionaire who spends thousands of dollars on a single dinner just give a few million to this? Wouldn’t they do that if it was their own children at risk?

What do I have to do? I can’t let them get this. I can’t not do something. What am I going to do for dinner tonight? I don’t think we have anything in the fridge and I don’t have time to go by the store. I could ask Jim to run to the store. Oh. That’s right. He isn’t driving anymore. I wonder if I took his license too soon. No, I did the right thing. I wonder if the kids have gotten their stuff done.I wonder if Brad read and if Frances cleaned her room.  I should call the house. Oh, I can’t. I have to call back Mr. Jones for work. I am tired. I wish I could just go home and take a nap. I wish we had a screened in porch so I could sit and take a nap in it. Uggh. I still need to sort a load of laundry and pay those bills that came in last week. Wait. Wasn’t it Jen’s birthday? Did I call her? Yes. I think I did. No. I might not have. Did I call back Melissa? Didn’t she call me and leave a message? I think that was a couple of days ago. Oh my God. My memory is getting as bad as Jim’s. What will I do if the kids get this one day and I do too? Who will take care of them if I am sick? What if I get in a wreck? Who will take them if I die now? What if Mom and Dad die right after I die? I need to make another appointment with the attorney and get that settled. Who should I make guardians? What would happen to Jim? Would the kids know I loved them more than anything? I should write them both letters. I don’t think Jim ever wrote those letters to the kids like I asked him to. What if I get cancer?  Who would take care of me and the kids at the same time? Mom and Dad would, but that would be a lot on them. What would I do with Jim? I can’t get sick. What if I do die though?

Who would pick up the fight if I am not here to do this? I wonder if any of my friends would? I wonder if the kids would? I need to do something. Maybe I should go jogging when I get home. I can’t. I have to start dinner and I need to work on those pictures from Alaska and I need to straighten up my desk and I have the book I am trying to read and I would really like to sit on the couch and watch a movie. Yes. A movie and a cold beer would be nice.I haven’t sat and watched TV in a long time. I think it has been a few weeks. What was the last thing I watched? I can’t remember. Maybe I will do that. I deserve it. Wait.  We don’t have any beer. I need to go to the store anyway. I wonder what I can fix for dinner tonight?

Frances and Brad. Vancouver. July 2014.

Frances and Brad. Vancouver. July 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 (17)

17 Responses to “A Day in the Life”

  1. Lisa says:

    Bless you. I can empathize with a lot of your thoughts and feelings.

  2. Tiff Stauffer says:

    I don’t know you, and you don’t know me. But know that I am praying for you and your family, and no matter what happens, I am picking up the fight right along side you. We will fight this, and we will find a cure. :)

  3. suzi says:

    Can I bring you dinner this week? And maybe a 6 pack?

  4. michelle b says:

    Living the same life. So very very hard. Your words equal my feelings.

  5. Martina says:

    my heart stings as I read your blog. I am speechless. I am praying for you and your family. What a dreadful disease. I will join your team and help you fight.

  6. Lisa says:

    Living the same life but with two teens. Thank you for putting into words and sharing the life we live. I feel less alone.

  7. Sherri Williams says:

    Stop. Take a deep breath. Let it out slowly as you count to 20. This should slow your racing thoughts and lower your blood pressure. Now get a piece of paper and a pen. Start to list all these things that are racing thru your thoughts. Do this for 10-15 minutes, not all day. Now eliminate the don’t have tos and prioritize the have tos by numbering them on the side. Now what can you delegate to someone else to do and ask them, including Jim or the children or family and friends. Okay now go back to don’t have tos that would be a treat for you like running reading watching tv and add 1 or 2 back to YOUR list. Can Jim run with you? watch tv with you? or maybe the children. You get a two for if they can. Do this every night, it might help you sleep better to unload your list in your mind, or every morning or both! I learned years ago that I can’t do everything and my list helps me see what I have accomplished and which direction I need to go. List even the smallest of chores/duties. We are Wonder Women in all that we have to handle, BUT we are not SUPER WOMEN! We Will Break! So we have to figure out how to take care of ourselves as we take care of everyone and everything else. Hugs and Prayers!!

  8. Wendy Sweigert says:

    Karen, I still read all your posts, but my focus has gone in life from my husband having Younger Onset to just being told two weeks ago that a sprained back is actually stage 4 cancer which has spread to the bones. He had a bone biopsy last week to find the original site and to determine “treatment”. They will treat for pain and some “time” but there is no cure. Hospice has already come and set us up as a makeshift hospital on our first floor. I now sleep next to him on a twin bed while he sleeps on a hospital bed. I will lose him to cancer before Alzheimer’s and some people have said that’s a blessing…really? Is either anyway to die? My life has undergone another huge shift now and I am trying to find my footing once again.

  9. Jeri says:

    Wendy-just when we think our load is so heavy we couldn’t possibly take any more…we have to. I’m really sorry to hear what you and your husband are going through. A blessing? Can’t really see it that way. In my mind a blessing would be laying down, falling asleep and then waking to find this was all just a nightmare….,,.for all of us. You’ll be in my thoughts and prayers.

  10. Jeri says:

    Karen, I’ve been having the same problem as you. The racing thoughts, the desperation, the guilt, the sadness, the anger and the need for MANY deep breaths. As Dwight progresses in this disease it gets harder and harder. Every single day a new problem arises that must be dealt with. And sometimes I’m just not equipped to deal…….hence, the guilt. Then here comes the desperation. I HAVE to deal! It’s just me-so what choice do I have? Then comes the overwhelming sense of aloneness. Alone in the dealing….alone in the understanding of what we’re going through…..just alone in every way a person can be alone. Then the fight to not give in to the depression that wants to rear it’s ugly head begins. I worry that one day I won’t have that fight left in me…….then what?

  11. Kimberly Smith says:

    Thank you once again for sharing your post. I have the same feelings and fears as I care for my husband and mother. I just pray I stay well and live long enough to see our boys grown and make sure my husband and mother are taken care of. I have to, there’s no one else to do it. Sending hugs your way, k.

  12. Andrea says:

    Give your burdens to God in prayer. He loves you and hears you. Tell Him every ugly thought in your head and then thank Him for each blessing in your life as you state each of them to Him in prayer. He has been my source of strength and encouragement. I will continue to pray for your and your family.

  13. I get it Karen – particularly this: No matter what I am doing, who I am with or where I am, a sense of imminent doom looms overhead.

    My new therapist says I am “catastrophising” with such statements. I get the impression she has not had direct experience with Alzheimers care…

  14. Lee Ann says:

    I agree with Sherri Williams, above. Make a list, write it down, do what you can, and you can see the changes you have made in what your list is day after day.

    You have to take care of yourself. You can’t take care of anybody else if you get sick or fall apart. I think you need to start swimming or jogging or something to exercise and clear your mind a bit. Everybody likes swimming, all of you could go together.

    I have lived with the same thoughts and fears when my exH was severely mentally ill. Afraid I would miss something, taking care of everybody and everything myself, and the thoughts that never ended about what I should do, could do, and can’t do. Waiting for the next shoe to drop is horrible. Please take care of yourself. If you need to have a caregiver over to stay with Jim, and you find an excuse to go away for a weekend with the kids, you need to get some relief.

  15. Sandy says:

    I’m sorry you’re feeling the agony of it all. I’m sorry Jim has to be locked inside his brain and scared. In generations gone by children were exposed to the sick or elderly being part of the family routine. Although we never wish it for them, I hope and believe it will teach them more about compassion and life. They will be stronger adults and kinder people having lived through this ordeal. Our family has planned for the kids future and if that terrible day came that you were gone (God I hope that never happens), and your parents were not capable, please know that Jim’s family is here too. Hang in there, and definitely watch that movie with a cold beer. This has been a big transitional year for us after years of taking care of Mom, then Dad and Bruce and 2 mentally disabled children. They are not in our day to day lives any more and those movies are wonderful.

  16. Marsha Carpenter says:

    As my husband’s Alzheimer’s progressed I kept a word document that I gave to his doctor. Today I read back from years ago and see that it was still “easy”. It helps me see where we have gone. When he can’t think of a word or an object in the nursing home I say “give it a minute”, if he gets frustrated I say “it’s okay, it’s not important. As our son says – we are the ones who suffer, we see every change, every “drop”, but for the most part he is happy and loves his puzzles, his pop up books, his little walks. Friday it will be 34 years of marriage but he remember’s nothing. But that is okay too. Because it has to be, because I can’t control the illness in his otherwise brilliant mind.. Just do the best you can, trust me the little things don’t count – if dinner is not perfect, it the lawn does not get mowed, if there is dust everywhere, so what? You are fighting a fight you cannot win, so do the best you can and leave the rest behind. And for God’s sake, have that beer~you earned it. Thinking of you…

  17. Anne says:

    Karen, I’m so sorry you feel this terrible. I’m afraid there’s nothing you or anyone can do to prevent this from happening. However, can you get therapy, get in an Alzheimer’s support group? Yes, talking is the the one thing that will help you, but projecting and living in fear won’t help. Those things are making it much worse for you. We’re all powerless over people, places and things. You can help yourself and the children but somehow try to get to the point of acceptance that Jim is declining and will get worse. A big hug…….

Place your comment

Please fill your data and comment below.
Name
Email
Website
Your comment