Full time at the club

It took me a long time to figure out the system. I still have a lot to learn, but I’m finding my way along this journey with Barry.

When Barry was first diagnosed, I was told to go to the Alzheimer’s Foundation. It was there that I learned that Barry should take a driver’s test at Courage Center. It was also there that I learned about getting Medical Assistance and something called a CADI waiver. (The Community Alternatives for Disabled Individuals (CADI) Waiver provides funding for home and community-based services for children and adults, who would otherwise require the level of care provided in a nursing facility.)

Not so easy

I thought it would be easy to sign up for Medical Assistance and get the waiver because Barry has frontotemporal dementia, and, of course, we would qualify! But it took me five tries! Much of the fault was mine for incorrectly filling out the forms. At one point, a Hennepin County representative called Barry to ask if he wanted to get Medical Assistance, and he told them no. So I was back to applying again! Don’t call a guy with dementia please!

maybe I can hire a robot

maybe I can hire a robot

When I finally went in person to the county offices, things started to move forward. I had filled out the wrong forms all this time. The representative gave me the right form and said it was written at an eighth grade level. I said, thanks a lot! I went to college and I can’t figure them out!

The question that settled it all

We were lucky this time. A great nurse came to interview Barry and me. When she asked him what he would do if there was a fire at our place, Barry said, “I would call my Mom.” I knew then he would finally get his Medical Assistance and be able to attend adult daycare five days a week. They had openings! I signed him up for Metro Mobility, and now he spends his days painting, visiting with new friends, and having a good lunch.

I can work and not worry about him home all day alone. Then, he became incontinent — so I needed more help!

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19 comments on “BARRY’S JOURNEY No. 8
  1. Beth-Ann says:

    This journey shouldn’t have to be so hard! Good thing you have comfy shsoes!

  2. Little steps forward and some backward. You can do it. I know you can.

  3. pj lyons says:

    I’ve been praying for you to have 5 day/wk day care. Yeah! Prayer answered. Now what I can pray for you for? a truck load of Depends?

    There ought to be social workers to help artists fill out forms. I’m terrible at them.

    Baby steps. Lots of little steps. I’m cheering you on from the sidelines.


  4. Stephanie Peterson says:

    Nancy / so sorry to hear all this. we have a lot of experience with everything you’re dealing with. Feel free to contact us!!!

  5. Laurie says:

    Sounds like 2014 is gonna be a better year… So glad you are finding answers and the help you’ve been searching for. Sending loads of hugs.

  6. Jeanne Aurelius says:

    I pray you have strength and we are so glad you are finding answers. David’s father had this disease. It is sad to watch.
    Bless you all on your journey.

  7. Bobby Brandt says:

    HI Nancy,

    Just a fan of your talent since Cheryl Hastings introduced me to your work many years ago. Cheryl and my daughter are the same age and good buddy’s. So I have been familiar with your books and now my grandchildren are, too.

    Sorry for all you are going through, and then you send US a Facebook smile every morning. You are one amazing, strong woman. I would love to walk with you one day next spring or summer and then buy you lunch and a beer. For my 60th birthday summer I had a very large bubble wand and waved the wand on top of a small hill in our back yard every day I could which was probably 60 days or more.

    Sending good thoughts your way on this life journey.

  8. Bette Ascrift says:

    Your comments/sharing are probably difficult and require more energy from your already tapped- out self, but they could be a lifeline for someone else. Thank you Thank you for putting it out there. you and Barry have some angels around you.

  9. Mo Pearson says:

    Hi Nancy,
    I have been ready about your journey. So sorry that your life has taken this turn, and become so difficult. I’m happy to read that you are getting some assistance. I admire that you are using your amazing creativity and sharing your journey. It is a blessing to many, I am sure. It is hard to learn that those we thought of as friends, are really merely acquaintances..difficult times show us our true friends. My brother and siste-in-law shared the same experience as you…friends turning their backs and walking away if they saw them, after Tim & Susie lost their 23 year old suddenly to a stroke. The true friends stay with you and walk with you, not judging… Supporting and lifting you up to God and His perfect will. Sending you encouragement and prayers for strength, peace, and joy in ‘your story’ , your life. Suggestion for a hike… Pensacola Beach! When it’s warm!

  10. Jim and Kay Griggs says:

    We think of you both each and every day. You continue to amaze us with your strength. How we wish we could ease your burden. Remember that we love you both and that God does have his plan for you.
    Jim and Kay

  11. Shannon Samuels says:

    Thank you for sharing your journey, Nancy. You show great courage and will be helping more people than you know. xo

  12. Amy says:

    I sympathize. My mom was asked could she see OK? Yes. She’s blind in one eye and has very little vision in the other one. Can she hear OK? Yes. She can only hear if one person is talking very loudly to her. Can’t hear softer voices and certainly can’t hear when all 31 of us get together and multiple conversations are taking place. Can she manage her financial affairs? Of course! She hasn’t managed a thing since my father died in 1977. Is she OK living on her own? Sure! She can’t find the bathroom or her room, can’t figure out how to make food, certainly can’t go out to buy anything because she finally accepted she can’t drive, doesn’t understand numbers so can’t dial the phone, etc., etc., etc. But if someone called her to ask if she needed assistance, she would say she’s fine. That’s the conundrum. It is a very sad time.

  13. Kathy Heller says:

    Nancy, would love to get together some time. Megan is pregnant and due in two weeks. I am getting a roon set up when they visit and I have many of the great books you wrote and we read together. They are just as meaningful to the next generation to be read together. Each one has an important message. Remember no matter what you are in control of your future even though choices are not always easy. Kathy Heller.

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