It’s just not fair

Trying to find a place for Barry to live has opened my eyes. First of all, there are a lot of caring people who do this work. Thank God for them!

When I first started looking for a place, I never thought to ask if the place was private pay or if they accepted Medical Assistance and a CADI waiver that provides disability funding for home and community-based services for people who would otherwise require the level of care provided in a nursing facility. I visited some awesome places that had gift shops, clubs, snack bars, massage, yoga and wellness programs. Heck, I wanted to live in some of these places myself.

The right place with a familiar link

But when I saw the cost per day, I nearly fainted. And when I said we are on a CADI waiver, many places would not accept it or had a waiting list years long. One place said it had a 10-year wait. What?? I visited adult foster homes, but the one I really liked felt too small for Barry. The trick is to find a CADI opening at a place that seems right.

Eventually I found one in Edina. Ironically, it is the care center where I worked washing dishes for a few months when I was 15 years old. As we drove there to look at the room for Barry, he remembered it was the same place his father stayed when he was dying of cancer. Barry swore at me and said he would not go in. It was a tense drive, and I was scared.

But when he arrived, he went in and was friendly and open to meeting people. I was near tears and felt so bad that I wanted tell them it was all a big mistake and run out. But I didn’t. Barry will move in soon.

After our visit, we went shopping for some things for his room. I cried all the way to IKEA. I kept thinking about all that Barry has lost this year — starting with his driver’s license to now his total independence. I was crying but Barry never asked why I was crying. Instead he asked if we could get a hotdog after we shopped. I said sure, let’s live it up!

It’s an odd feeling. I am sad about his move, yet at times so relieved that I am almost happy. How odd to feel two different emotions at the same time. I hope the move goes without a hitch.

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21 comments on “BARRY’S JOURNEY No. 10
  1. Deb Miner says:

    Nancy, this sounds like the right solution for both of you at the right time. Thank you for continuing to share the challenges and journey. I empathize with those mixed feelings you describe–so understandable! You are amazing and I hope your happiness increases. My best to you and Barry.

  2. Linnea says:

    Oh my gosh, Nancy–tears with you and hugs for encouragement. Again there is irony for me as it somewhat compares with my daughter who has mental illness. I wish I could be a part of where she is living and yet totally relieved I am not.

  3. Bonnie Jean Flom says:

    Your emotions of both sadness and relief are so understandable, Nancy. Thank you for sharing your journey with us. Many of us will have similar experiences in the future and your generosity in telling your story will surely help us. Sending love and strength in your direction!

  4. Lisa Ventura Olson says:

    God bless you Nancy! You are doing what is best for B. Remember to take care of yourself too

  5. Thank goodness for a safe, caring place–it is providing care for BOTH of you.

  6. Nancy too says:

    Believe it or not, you have gotten past the hardest part of what has happened to you and Barry. I’m not saying there won’t be tough things still–there will–but, as you said, the caring people in this system (who should all have halos and wings) will help you with it now. Ask questions. They know the answers. You are doing the right thing for Barry. And for you. He will be in a safe place, with people who understand him, and can care for him, and you will not need to worry about him 24/7. And when you visit him, you will be his friend, not a person responsible for custodial care, and can just *be* together. {{{{{Nancy}}}}}

  7. Beth-Ann says:

    Hope you and Barry can both keep living it up!

  8. Mary Glendening says:

    I have a friend who went through many of the same things that you are going through. She kept delaying moving him to a care center. Finally in order for her to go to visit her children, she had him stay at the care center for a “temporary week”. When she returned, her husband asked if he could stay. It has been a gift to both of them. He has the care of experts and she can live more worry free at home. My prayer is that this also be your experience.

  9. Ann Hustad says:

    Oh Nancy!! I’ve followed your journey and feel so helpless. You have such strength. I admire you old pal. Continue to use your good judgement. My thoughts are with you!

  10. Mary Swank says:

    Thanks for this update. Sure thinking about you and Barry an awful lot!

  11. Dear Nancy… I JUST read your blogs… I admire you, and the strength and courage you possess. What a journey for you both. I can really relate to the processes one has to go through for their loved one to get the care they need, and through Medical Assistance. What a learning curve. Somehow, it does come together. Think of what a resource you will be for someone someday, although that is not the reason you are writing these blogs.
    I think the world of you… and am sending love.

  12. Jean Spielman Housh says:

    Nancy, this had to have been a tough decision for you. And then, actually moving him. My goodness, you’ve been through the wringer. I am in Florida with my husband, Allen, who has some form of Parkinson’s disease. You and I emailed a few weeks before Christmas. We are back in April. Let’s have coffee and talk. There are so many changes, symptoms, headaches to these crappy neuro-diseases. Hang in there. Jean

  13. Maryanne says:

    The illustration speaks to my heart. Love you, Nan.

  14. Nina Crittenden says:

    Glad you found a place that will help the both of you, Nancy! xoxo

  15. gwen hauser says:

    complicated emotions…hang out with people who get it.

  16. Wanda says:

    Having gone through this scenario with my mo, my heart aches for you. Everyday as I look at your clever doodles, I say a prayer for you that you will continue to have the strength and stamina to muddle through all these life changing events. And muddle is the right word, cause there are no clear directions for what needs to be done. Each situation is so unique. Right now, the important thing is that Barry is safe and watched 24 hours a day, something that you can not nor should have to do. A caretaker has to take care of themselves first in order to be there for the ill….remember that. Hugs and kisses to you and your family!

  17. Debbie says:

    This is something that we have all been praying for, for a long time! I know this is as hard on you as it is on him! Take care friend!

  18. Shirley Barnes says:

    I had no idea that Barry was ill, I will keep all of you in my prayers. Please call me if you ever have any questions or need advice or simply a listening year, remember I have been helping families through this for over 30 years and I am happy to help a friend.
    God’s Blessings,

  19. Beth-Ann says:

    This man was just on Almanac. Sounds like he is hiking the same path you are

  20. Doug Nathan says:

    Hi Nancy. Since I’m rarely on Facebook, Maggie alerted me to what has been happening with you and Barry. I have to say that I’m amazed at your willingness and need to write, draw and engage in dialogue about this challenge–don’t take me wrong, but I do think women are much more suitable for this. I have been the primary caregiver for my mother for six years who has frontal temporal lobe dementia; even though I am there when needed, I don’t have a fraction of your passion and commitment–a parent of course is different than a spouse…but still, I admire what your doing and wholeheartedly empathize.

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