BARRY’S JOURNEY No. 9

Time to find a place for Barry to live

on a cloud

on a cloud

I am exhausted! Lack of sleep can get to a person. For weeks, Barry has been getting up many times in the night. He tries to shower and start the coffee. Usually he is okay with me sending him back to bed, but other times he gets really mad.

Deeper confusion sets in

A new medicine helps him sleep. He usually gets up around 4 a.m., and most of the time goes back to bed without too much of a fight. But now he can’t figure out how to work the shower and keeps flushing the toilet over and over again. I think he is mixing the toilet up with turning on the shower.

He can’t shave anymore either. And I noticed he drinks the mouthwash instead of spitting it out. Getting him dressed is hard because he is big and can’t help much. Putting socks on someone who doesn’t help is really hard, too. Sometimes at 5 a.m., I will get up, lay out his clothes and go back to bed. He slowly figures it out while I doze, hoping for just a little more sleep.

My big worry now is that my traveling for speaking engagements begins in February and continues through May. Last year Barry could take care of himself. Now a year later, there is no way I can leave him alone. Every morning I have to change his sheets.

He can’t make dinner for himself and leaves the door open even on the coldest days. I worry he will try to go out somewhere without a coat or gloves.

I know it’s time to find a safe place for him to live — and it breaks my heart! But I have to work to get out of debt and also for my mental health. I need to be who I am and the person that Barry was so proud of.

21 comments on “BARRY’S JOURNEY No. 9
  1. Laurel says:

    I just read a book, “Big Al” by Judy Seegmiller. It is about being caretaker and advocate for her husband during his decline from early onset Alzheimer’s which they called Big Al. Her experience sounds so much like your post today. Hugs!

  2. Jackie says:

    Nancy,
    Check into getting him a PCA. If he gets MA he should qualify for help at home. Call the county and ask for the public health nurse, then request to get an assessment for PCA services. This is a person who is paid to come into the home and stay with Barry and help him with all his needs. It will help you get a break and keep him safe. Any questions please call me. Dad and Susan have my #.

  3. Beth-Ann says:

    Nancy, I hope you have found more of the peace and sleep you truly deserve while Barry is in a safe place.

  4. Colleen says:

    You have survived what can honestly best be described as a living nightmare. I admire you, and I adore you and the kids.

  5. Lyndie says:

    Nancy I have been reading your posts. My husband recently had 2 strokes which followed the one last spring. He has lost the use of his right side, memory loss, confusion, speech ephasia and more. I am a newbie at coping with all of this. At the present we are struggling along at home and thinking it may be time for a care facility. I am not myself anymore. If you have any words of advice please email me. I am floundering .
    Thanks
    Lyndie

  6. Amy says:

    YOU WILL MAKE IT AND BE FINE!!!

  7. First, thoughts and prayers continue for you and your family. Second, Nancy you are surviving.
    Thirdly, I admit I don’t know Barry but I just feel he is still very proud of you and wants you to do what you love to do. Then just think of all the things you can tell him when you get back from your school visits.

  8. joe Nathan says:

    Nancy, you are admired and appreciated far more than I can convey. Many, many of us – children & adults, have gained so much from you.

  9. Sandy Boren Barrett says:

    Nancy,
    I continue to marvel at the strength and courage you display. The one thing that really struck me is your saying “I need to be who I am”… This is who you are, an amazingly creative and courageous person ! I can’t imagine admiring you more than i already did, but I do…thank you for sharing your journey, it reminds me to continue in life with an attitude-of-gratitude….much love and prayers for you all !

  10. Pj lyons says:

    (((Hugs))) and prayers

  11. Lisa Ventura Olson says:

    I continue to keep you & Barry in my thoughts & prayers, Nancy! I think you do need professional help with Barry. Your health & sanity is very important! Love & prayers

  12. Kathy Heller says:

    It was such a difficult decision for you to make but it was the best. My dad would get up in the middle of the night and try to cook and start fires. That was when my mom decided it was time for him to go to a care place. He could not only hurt himself but put others in danger. You just don’t expect it at your age. God Bless, Kathy

  13. Jean Jaeger says:

    Hi Nancy! You are sharing your journey and it is such a powerful message. “You do what you can and then when you can’t do it alone any longer you ask for help.” Good for you. You should write a children’s book about this. It is a powerful message. Went through this same thing with my own dad.he was only 70 when it started. 🙂

  14. So many of us suffer from guilt that goes along with the sadness of watching someone we love go through this kind of illness. But you did not cause this. You can not change it. You must continue to love yourself and care for yourself as well as Barry…You may need to see a lawyer about self-impoverishment laws in your state. I know every state is different. May you be well, through all the grief and heartbreak. I remember.

  15. marilee mahler says:

    Nancy, Sandy encouraged me to read your blog. I am so sorry to hear of your troubles. I will keep you and your family in my prayers. My own kids have benefited so much from the positive philosophy of your many stories — I will hope that it will carry you through these difficult times.
    Marilee

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