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Joined: 8/21/2013 Posts: 10
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HI
Mostly I just read this forum, today I thought I would open my computer and type. My father worked on the railroad for 30 some years. Couldn't wait to retire! He retired in 1998. He was often gone for 2 to 3 days at a time for work. Now every single (I wish I could swear) night he packs up a ridiculous assortment of clothes and random crap (oars from the boat, flashlights, remote controls, whatever is not tied down) and insists he has to go to work. We've tried distraction, nothing distracts, we've tried treats, nope, we've tried taking him for a drive, nope, we've tried medication, nope, we've tried playing along, makes it worse, we've tried ignoring, he gets angry we are not helping. He thinks we all work on the railroad. Last night he was trying to call the railroad dispatcher on the remote control, then tried to find their phone number in a puzzle box. Then he turns to the phone. Every night he sits at the phone for 3 hours at a minimum trying to call the dispatcher. He used to reach them. One time he insisted he was at a crossing and there was an accident. We got a visit from the RR police the next morning. He often calls 911 and asks for the number. The police know my parents house well... I sometimes give him my husbands number and tell him its the dispatcher. For as "gone" as dad is he manages to have a pretty complex conversation about RR stuff and my husband can't always answer correctly. Last time I did this, dad got suspicious and accused me of playing games and tried to kick me out of the house. He goes out to the garage sometimes 30 times a night to load or unload crap in his truck (which he doesn't have keys for. I'm worried. We are in Maine and this can't go on in the winter. I also think he will just start trying to walk to the railroad. You just can't imagine how strong his drive is to go to work. Since nothing else works last night I tried some tough love, showed him the picture of the day he retired, where he hand wrote the date and "Last trip", told him he was having a bad memory night, tried to get him to watch tv with me, nope. I'm just at
a loss. Sigh. I guess there is no question in there. Just venting.
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Joined: 12/30/2012 Posts: 3520
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I am sorry for what you go through each night. Your father must have really loved working with trains. I am hearing "I've been working on the railroad"
song in my head and mean no disrespect. Has his dr prescribed any meds to help him calm down at night? Could you set up a model train set for him or would that be too childish for him. I pray you find something that works to help you and him.
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Joined: 12/15/2011 Posts: 4217
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Hi,
This is something that occasionally happens when LO had a strong work ethic, and felt people depended on them doing their jobs. I'm a nurse with years of experience in dementia care. Here is a story I wrote about one of my residents with dementia. I hope it will help you as it is a good way to handle this problem.
Harold
worked hard to support his family. After 15 years on the assembly line, he had
been promoted to shift foreman and took his job very seriously often meeting
with workers or taking their calls after hours to address any issues or
concerns they had. Several times he had won awards for outstanding performance
and he proudly displayed his plaques and letters of recognition on his den
wall. When Harold started having problems in work because of early dementia,
the employees working under him rallied around to protect him but eventually
the company had to let him go.
We expected that Harold would have some problems
settling in, but were surprised at the length of time it seemed to be
taking. He continued to be uncooperative
around personal care, swore at the staff at times and insisted he needed to go
to the factory. We arranged for a psychiatrist to evaluate Harold, but since he
was already on the appropriate medications for depression, it was decided that
we should monitor his behaviors and try to develop a behavior modification
plan.
I usually tried to listen to the report on
the dementia unit every few days when the nurses changed shifts. As Director of Nurses, this gave me a chance
to catch up on any difficulties the nursing staff might be having with the
residents and it was a good teaching opportunity. While report was being given
one afternoon, Harold came up to the desk and started yelling at Jane and the
nurses and banging his fist on the desk. “Get back to work! What’s the matter
with you? Break time is over!” At the same time, Harold was trying to pull the
staff away from the desk. A nursing assistant tried to distract him but Harold
continued to rant about people being on a break too long and he insisted they
get back to work.
We held a
staff meeting later that afternoon to discuss Harold’s problems and Jane had an
idea. We called Harold’s wife and talked to her to get more information about
his job. The next day when she came to visit, she brought one of Harold’s caps
with her. It had an automobile logo on it and was the same one he wore to work
every day. His main responsibility as foreman had been to manage the workers in
his division. Among other things: he did the scheduling, made sure the
employees came in on time, did their jobs well, followed the rules for breaks
and days off, and came to him with any problems they were having. We decided to try to use this information to
help Harold with his depression and manage his behavior.
We gave Harold his cap to wear and a clip
board with copies of our old schedules. Although he was too confused to
actually understand the schedules, he proudly walked around with his clip board
and a pencil “checking off” a few things every now and then. When the nurses
met at the desk for change of shift, they told him they were having a business
meeting and gave him “minutes” which were actually old regulations from the
housekeeping department. The nursing assistants started calling him “boss” the
way the men and women who worked under him used to do and soon we began to see
changes in Harold.
As long as the staff responded to his
anxiety about work by assuring him that they were following the schedule or
were getting a report for him, Harold stayed calm. Even better, he became
brighter and less depressed. We also found that when the staff approached him
for personal care, calling him “boss” and telling him they were there to help
him get dressed for a big meeting, this approach usually earned his
cooperation.
What we
learned:
Harold filled several important roles in
his life but even with dementia, the one he missed the most was his job as
shift foreman. We all need something important to do each day. For many of us
it is the reason we get out of bed in the morning. These feelings may not
change just because the person who has them also has dementia. Allowing Harold
to get back into that role did not solve all of his problems but it helped him
to be more cooperative and did help significantly with his depression (we even
caught him laughing every now and then.)
All of this made it easier for us to provide his physical care and he
definitely had a higher quality of life because he believed he was working
again.
Hope this helps
Stephanie
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Joined: 12/4/2011 Posts: 19292
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Stephanie..what a wonderful story and lesson. Reminds me of the story of the patient being counseled before being released from "in-house" mental care. He was a carpenter who believed he was Jesus. The Dr. quietly told him that he should probably keep that important piece of information to himself because not everyone was ready for it. Bottom line ..."Jesus" did just fine.
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Joined: 5/3/2013 Posts: 134
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I'm glad to know (that probably sounds horrible and I don't mean to say I'm really glad!) that my Dad is not the only AD sufferer who has a fixation on his former job. My Dad retired from the Air Force after 20 years, then went to work in civil service on base with flight scheduling for airplanes, etc. He worked there until he finally, actually, really retired! About 13 years after his retirement he was diagnosed with Alzheimer's (though I think it has slowly been creeping up on him). He has slowly become worse and worse. One of his main delusions (I guess that's what they are) is that he still works on the flight line; that he still makes out flight schedules and works with the computer, etc. This delusion goes in cycles. He'll be at it for several weeks or so, it'll go away, then a month later it'll be back. Sometimes he wants my Husband to take him to the base so he can check in at the personnel office and let them know why he's been gone; he'll want me to call the office and let them know he won't be able to come in to work; he'll want to call and let them know he made a mistake in one of the schedules; he worries that they'll turn him in as being AWOL and the security police will come and get him! He worries himself to death about this! And no matter what you tell him, or anyone else suffering like this, it doesn't make an impact. I mentioned to him one day some months ago, as we walked up and down the driveway, that he hadn't worked in almost 20 years. He said that wasn't right! He asked me what year it was, and when I told him it was 2013, he said that wasn't right, either, that it was 1973! Time with him is all messed up. I think that's one reason so many AD patients are confused with working, retirement, not working, etc. They don't know the day, the month, the year, even the hour.
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Joined: 8/21/2013 Posts: 10
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Stephanie, thank you for that story. I know it to be true. I just don't know how to "play" along with it. Being an outdoor and very solitary job, and of course missing the ever important prop... the train...
Horizon, I was going to mention in my initial post, that when he is not in the railroad delusion he is also in the Air Force delusion. He was only in for 4 years. Stationed in Japan. About every three weeks he believes he is either being deployed to Japan and must report or the AF police will call him AWOL and arrest him, or he believes we are IN JAPAN and he is being sent home, so he packs up all his clothes and anything else in the house he wants to keep. One day I called and AF recruiter who said he would write dad a letter on official AF letterhead thanking him for his service and wishing him well in his retirement. I stopped short of getting it because we got one for the railroad. When my mother attempted to use it to calm a delusion he ripped it up and accused her of doing it to get him fired. I didn't bother the poor recruiter again. Let me know if you find anything that works for the AF delusion.
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Joined: 11/29/2011 Posts: 1840
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My mother used to be a mail carrier. When she was first placed in the nursing home, she was in rehab and had somewhere to be every morning and afternoon. But when her rehab was done and she was just going to activities, she began to get restless and started the "going home" thing. So the activities staff came up with the idea to have her "help" them deliver the mail. Of course, it took longer for them to make the rounds, but it gave Mom great satisfaction that she was doing her "work".
Three days before she died, she tried to get out of bed, something she hadn't been able to do un-assisted for a long time. When we asked where she thought she was going, she said "I have to go to work."
A strong work ethic never dies, apparently. Stephanie's story is a great one of making adjustments for an individual patient to keep them more content in their current reality.
Maybe you can figure out something that will help your dad, even if it is only for a few minutes at a time.
Welcome to the forum!
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