From hospital to hospital to where now?

A person with frontotemporal dementia (FTD) is not someone you want to be around. Hanging out with Barry can sometimes be a very unpleasant experience. I am learning that caring for Barry as he travels on the FTD journey is complicated and full of wrong turns and dead ends. In my last post, I talked about Barry doing quite well while living at a care center. But that did not last.

A few weeks ago, Barry started swearing a lot more and bothering other patients. His behavior got worse until one evening he was supposedly so out of control that the nurses had to call 911 to take him to the hospital.

Who will take him?
Last fall when Barry was still living at home, my social worker advised me that If Barry ever got too hard to handle, to call 911 and they would take him to the hospital. And when the hospital wants to release him, she told me to say that I can’t handle him at home anymore — then he would be placed somewhere. I had no idea his care center would try this very same thing.

I never called 911 all the while he was at home, even though there where moments when I felt totally overwhelmed. But I should have known this tactic could be used by the care center because this was exactly how his assisted living place in Edina got him moved out for good! Barry was too much work — so rather than work with him and me, they sent him to the hospital. When he was deemed good enough to go back — first to the assisted living place then later to the care center, neither would take him back.

Barry’s agitated behavior usually starts in the evening. This is called Sundowner Syndrome because Alzheimer and dementia patients often get confused later in the day. This is so common that you would think the caregivers would know how to “redirect” Barry as they had taught me to do. Sometimes I believe that their not wanting to keep him in their facility comes down to money. I wonder if it is because Barry is on medical assistance and someone on private pay needs his bed, that the facility tries to get rid of the irritating FTD guy on medical assistance? I hope this is not the case, but I’ll never know for sure.

So that evening Barry was taken to Methodist Hospital where he was put in a locked room with nothing in it but a bed and a blank TV. Of course, Barry was confused and scared. So he was swearing! When a doctor finally arrived, he told us that the hospital didn’t take dementia patients. So they sent him back to his care center with a dose of something to help him relax. But the next day, he acted up again and they sent him to another hospital that also did not take dementia patients. Finally he was sent to Unity Hospital in Fridley that has a geriatric psychiatry unit where they could work on his medications. They did a great job and after two weeks, they found a better balance of medications. During a few visits, Barry and I actually had some conversations where he was engaged! I was hopeful!

On the Sunday before Memorial Day, Unity Hospital suddenly decided to ship Barry back to his care center. I was told that under medical assistance, your bed at a care center can be held up to 18 days, but after that you lose it. As I look back, I should have asked the hospital to keep him until after the holiday, but the bed-hold had me nervous. I also should have been there when he arrived back at the care center, but all my family was celebrating a late Mother’s Day at my sister’s farm, and I just wanted a day away from hospitals and the care center.

Taking a page from Barry’s playbook

Barry lasted only an hour-and-a-half back at the care center before they once again sent him to Methodist Hospital! At this point I went nuts. I yelled at nurses and social workers at both hospitals and the care center by phone as I drove back into town. And I threatened to call my lawyer! (What lawyer?) I thought I would lose my mind. At one point, I took a page from Barry’s playbook and yelled F*** you at a social worker. I can understand why Barry says that so much. FTD is so damn frustrating and confusing that sometimes it’s the only word you can come up with!

When my son Mike and I got to Methodist Hospital, we found Barry in the same room, standing inches from the same locked door, confused and really, really scared. I had a lot of questions — first of all, why did they send him back to a hospital that didn’t take him the first time? Where would Barry go now? Why was Barry so agitated at the care center? Did something happen to him there? Who in this town can handle a man with FTD?

What was I going to do now? To be continued …

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16 comments on “BARRY’S JOURNEY No. 15
  1. Mary Swank says:

    Dear Nancy,
    Your quandary is duly noted and I pray for you two wonderful human beings and your dear family!

  2. Missy says:

    Oh I feel your frustration, anger, sadness, and helplessness!! We went through very similar things with my dad who had Parkinson’s disease and dementia that comes with the late stages. My dad was tied to a bed at Methodist hospital because he was so violent! Never was he like that in his life. My poor dad was shuttled around to different places and it was a nightmare. At one point it took 6 policeman, firemen, and emts to get him in the ambulance. I think these types of sundowner outbursts are more common than we think. Why the officials make you feel so helpless, I never did figure out. The whole thing SUCKS!! My dad passed away after 4 months of hell, may he rest in peace. Stay strong and hang in there!! Hugs!!!

  3. No words to share at all. None.

  4. Renee Vaughan says:

    Oh Nancy. I’m crying after reading your experiences. It shouldn’t be like this. It shouldn’t at all. You have strength you didn’t know was there… and more. It will get easier, maybe not right away, but it will. Prayers for you and Barry.

  5. Stacy Rogers says:

    My mom was becoming aggressive and fighting her care. There was fear of her injuring herself or someone else. She had 2 visits to the facility’s Geriatric Behavioral Unit. Sounds like where Barry went…very empty, stark place to limit stimulus. They worked on getting her meds in line. She went in the 2nd time still walking at least fairly well, came out no longer mobile. I don’t blame them, it was the progression of the disease and the meds needed to keep her peaceful. I didn’t want her to hurt herself or anyone else and didn’t want her to suffer through the agitation…but it was still hard to see the changes. My heart goes out to you as you go through this.

  6. Debbie says:

    Nancy, We just have to believe this will get better. I feel so helpless. I will keep saying a prayer for you and Barry!

  7. Nancy Carroll says:

    You are so on my mind and in my prayers! I can’t even imagine what you’ve been going through!

  8. Maggie and Doug says:

    Nancy, Doug and I are going through the same thing with his mom! She is now at Jones Harrison in the memory care unit and the only way they can keep her calm is unfortunately with very strong drugs. Haldol being the strongest . The staff is good and trying to figure out how to care for her and keep her and the other residents and staff safe. But unfortunately they have to sedate her so much that she sleeps all day, isn’t mobile and barely talks. It is very hard for us especially Doug but on some level better than her outbursts. She was very cruel to us and it was hard. She is also on medical assistance but I do think the care is good. You might want to check it out if you haven’t already. It seems like there are empty beds there. Thinking of you. Maggie and Doug

  9. Amy Johnson says:

    Nancy, so sorry for your difficulties (read that as a gross understatement). As you know, I’m navigating a dementia situation also and it’s heartbreaking, maddening and very upsetting, although not nearly as difficult as yours at this point. Don’t know what to say except don’t give up. You are Barry’s advocate.

  10. Cathy says:

    Nancy – my heart aches for you! My mother experienced issues with mental illness and dementia. We experienced so many ups and downs with hospital care. They were ready to address physical issues, but fell down dealing with mental/memory issues. After she passed, my father developed issues with dementia. He’s in a memory care unit and not happy with his situation. It doesn’t seem fair and it is hard for all of us – including my dad. Your stories break my heart, but also make me feel better, sadly, to know I’m not alone in this painful journey. Thank you for that. You are in my prayers!

  11. Bette says:

    Dear Nancy- my heart is breaking for you and for all who navigate this complicated river of tears. Barry is so blessed to have an advocate like you- keep yelling, it will help- you, at least, and perhaps Barry also. Saw this on a sign outside a church yesterday:
    God may say wait, but never says worry.
    Love you, dear bus buddy

  12. Laurie Spencer says:

    Nancy. I read this to Mike and he said, ” I’m sorry our system doesn’t work very well for patients and even worse for their families. Having said that, your perception about Unity is right on . I know and work with a number of the team at Unity , and would be happy to help facilitate re- evaluation at Unity if that’s needed. Perhaps more importantly , I will ask if they have any suggestions for better long term care if you would like.”
    Let me know Nancy if you would like Mike’ s number.
    Love ya. Laurie

  13. Nancy Gjerde says:

    Nancy. My heart aches for you as you go through this with Barry:(. Thank God he has you to advocate for him. This is not right! The system must change!! I hope that enough people will see this and can recommend resources that will assure both of you a quality of life that you should have given these circumstances! Know that you and your family have been and will continue to be in our prayers! Your strength is an inspiration!! Peace to you!

  14. Jean Jaeger says:

    Hi Nancy. I must say you surely have gotten the word out about how difficult it is to deal with all the issues of dementia. Look at it this way…you have a name that most local people know. Through Barry you are getting the word out to others. You comfort and make others feel that they are not alone. It is your gift to others even though the struggle just plain s…s! I really love reading your posts and am happy you have the skill and desire to share your story. I think of you every morning when I look at my picture of the dog in bed! Happy thoughts to you.:)

  15. Sandy Malloy says:

    Hi, Nancy; I’m a friend of Jim Joyce from his Business Wire days.

    My mom had stroke-related dementia and my dad and I went through a lot of what you are experiencing. Hospitals can’t deal with long term care, period, and the best way to get the bed you want at a skilled nursing facility (preferrably with a memory care unit) is to say the magic words “private pay” – which unfortunately you can’t do. Yes, they definitely only have a limited # of beds for Medicaid patients, if any, so it’s a waiting game. Mom finally got into a decent facility with the help of a discharge planner at the hospital where she’d been taken. (Even private pay is no guarantee of anything if the facility can’t handle memory care. Mom got thrown out of a place that came highly recommended & accepted into a facility that took patients on public assistance, so you have hope.)

    You might want to try calling Unity and see if you can speak to the discharge planner. You also might want to consult a geriatric care manager – one of them was a great help to me and I only had to see her once.

    I wish you the very best of luck. If you are a friend of Jim and Teri’s you must be a very nice person who is suffering terribly and I’m so sorry to hear of it.

  16. Shelley says:

    Keep drawing Nancy! I’m just feeling so bad about the lack of understanding and care out there in the world. You deserve a medal. Hopefully it helps knowing so many of us are thinking of you and hoping for some peace soon.


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