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Ttom here finally!
TommyT
Posted: Sunday, March 25, 2012 7:37 PM
Joined: 3/23/2012
Posts: 17


Been gone since mid February. Had a little trouble with the Alzheimer's  bug! Seems it caused me to have a fit of rage and it took some time to shaked it. Mostly, had to adjust the meds.

While I was gone I couldn't recall how to access this message board.  Actually even forgot complely about it for a while.Now I'm residing in a hursing home. Most of the residence here have advanced AD and are much older than me. My wife and family visit me regularly.

These living conditions are safe but they have some serious drawbacks. The biggest one goes liked this: When I was diagnosed with AD back in 2008 I allowed myself to sink into a deep funk. After ab out 2 months and possibly the newly diagnosed anti-depressant kicked in I brought myself to smile again and know that "life goes on". Now that I'm around all of these catotonic and ragefull people I realize that they are a window into my future. Hopefully the medication will delay that day long enogh to find a cure. But after the recent episode, they better hurry!

Hope to continue with this board in my new roll of particapant, but I never know when I'll forget how to turn it back on!

 

Later TommyT (Ttom)


Myriam
Posted: Sunday, March 25, 2012 8:08 PM
Joined: 12/6/2011
Posts: 3326


Hi, Tommy!!! So good to hear from you. Yes, please let us know how things are working out.
Iris L.
Posted: Monday, March 26, 2012 2:13 AM
Joined: 12/15/2011
Posts: 16575


Welcome back, TommyT!  I've been missing you! 

 

Sorry to hear you are in a nursing home.  Do the powers that be give you any indication if this will temporary?  Medications will help, also aids that are usually reserved for non-dementia folks, such as relaxation techniques, meditation, deep breathing, etc.  Anything to self-calm and reduce anxiety.   

 

I hope you will stabilize very soon and continue to join us.  Keep your email address and password on an index card or somewhere else you can find it because you need it each time you enter this site. 

 

So long for now.  Write back soon!

 

Iris L. 


TommyT
Posted: Monday, March 26, 2012 6:12 AM
Joined: 3/23/2012
Posts: 17


Iris L. wrote:

Welcome back, TommyT!  I've been missing you! 

 

  Do the powers that be give you any indication if this will temporary? 


yes, I believe the nursing home situation is temporary but there is no definative end in site. Between us- this can't last forever. The expense is too massive for my private funding. Make sure that you purchase "Long Term Care insurance if you are allowed!

Later, Ttom

(retired Peer Volunter)


Mimi S.
Posted: Monday, March 26, 2012 9:53 AM
Joined: 11/29/2011
Posts: 7029


Tom, Welcome back. 

Hopefully your residence will find some activities that stimulate you.


folly
Posted: Monday, March 26, 2012 11:31 AM
Joined: 12/6/2011
Posts: 31


Ttom, it's great to see you posting again.
younghope1
Posted: Monday, March 26, 2012 11:53 AM
Joined: 12/5/2011
Posts: 127


Tom my Dear Friend, I have missed you! Glad you are back here on the forum , but so sorry you are in a nursing home. I think that is the fear of most of us here with dementia, is that someday that is where we will reside. If I do, I just hope I don't know it and in my own little world.

 

Tom, keep talking to us. I connected with you in connections.

 

Love ya, Tracy


Iris L.
Posted: Monday, March 26, 2012 12:39 PM
Joined: 12/15/2011
Posts: 16575


Tom, make sure the NH knows that communicating with your cyber-friends on the message boards is a very important part of your therapy! 

 

Iris L.


Lisa428
Posted: Monday, March 26, 2012 2:26 PM
Joined: 12/5/2011
Posts: 795


Hey Tom,

 

Good to have you back!  We've missed you a lot!

 

Please, tell me how you are feeling and doing.  Are there things in the NH to interest you?  Activities?

 

Has the doctor found the right meds yet to keep you calm?

 

I don't know if your remember Alan in Colorado?  He suffered with the same issues.  I received an e-mail from him a few months ago and he's still hanging in there!

 

Tom, please write down what you need to remember to get on these boards.  Don't think you'll just remember how to.  I have my stuff written  down.

 

Please, take care Ttom.  Would your prefer to be called Tommy?

 

Please, keep posting!

 

Peace and hope,

Lisa

 


Geegee
Posted: Monday, March 26, 2012 2:51 PM
Joined: 11/29/2011
Posts: 514


Oh, Tom Tommy, it's so great to see you back!


Please tell everyone there how important talking to us is and it is part of your therapy.  Write a note and place it in your room so they can read it and remember!  


Sorry to hear about  your recent changes.  It's something we all dread.  Come back often and let us know how you are!!!!!


Later!




John891
Posted: Monday, March 26, 2012 3:09 PM
Tom, good to see you back man.  Keep smiling.
Myriam
Posted: Monday, March 26, 2012 3:23 PM
Joined: 12/6/2011
Posts: 3326


Dear Moderator,

It's so important to allow a member to save their login information to their computer. Please, please reconsider your decision not to allow us to do so.

 


TommyT
Posted: Monday, March 26, 2012 4:52 PM
Joined: 3/23/2012
Posts: 17


he  Myriam wrote:

It's so important to allow a member to save their login information to their computer. Please, please reconsider your decision not to allow us to do so. 

  


This is a whole new computer, purcashed for me by the nursing home. So, savingf the login information on  my computer wouldn't have helped.  I needed to establish the new account and had to use a new screen name. I elected to use TommyT. Whatever you all want to call me is fine but nobody has called me "late for diner" in a while!
John891
Posted: Monday, March 26, 2012 5:20 PM

Hi Myriam,

 

Sorry, but I think the moderators don't really care.  I have asked many times for changes on this board before and they always say in the "near future."  I also struggle everytime I try to login.  It's easier if I just write everything down on a notepad or something.

 

 


Myriam
Posted: Monday, March 26, 2012 6:51 PM
Joined: 12/6/2011
Posts: 3326


John, it's frustrating, isn't it.  ~X( at wits' end
Iris L.
Posted: Tuesday, March 27, 2012 12:05 AM
Joined: 12/15/2011
Posts: 16575


Lisa428 wrote:

 

I don't know if your remember Alan in Colorado?  He suffered with the same issues.  I received an e-mail from him a few months ago and he's still hanging in there!

 

 

I miss Alan.  I think of him often.  Please let him know Iris says hello when you email him again, Lisa.

 

 

I wish we had a way of keeping in contact with members who aren't up to posting much.  It would be nice if they could just say, hi, I 'm still here!

 

Iris L.
 


TommyT
Posted: Tuesday, March 27, 2012 8:22 AM
Joined: 3/23/2012
Posts: 17


Myriam wrote:

Dear Moderator, 

It's so important to allow a member to save their login information to their computer. Please, please reconsider your decision not to allow us to do so. 

  


In defense of our Moderator who will never try to defend themselves because it is their boss that is responsible. They are not resposible for this mess! It is the ow2ner/operator of the site that is responsible. You know, it is the whole "BOTOM LINE THING" that we are dealing with. Since ther is no "green dollar" pay back return for changing the log on criteria, it won't get done.

 

The moderator is only there to make sure we all play by the accountants rules. Please spare our moderfators, they do as good as they can!


John891
Posted: Tuesday, March 27, 2012 8:33 AM
Yeah good point Tom.  Thanks for pointing this out to us.
SunnyCA
Posted: Tuesday, March 27, 2012 9:36 AM
Joined: 2/14/2012
Posts: 1752


Speaking of nice moderators who care ... several members have recently referenced articles from the blog, "Ask Dr Chill", on the Caregiver Forum.  The blog is written by former moderator Carrie Steckl.

 

http://www.chicagonow.com/ask-dr-chill/about/

 

Carrie may not be with the Alz Assoc any more, but she's not forgotten ... and she hasn't stopped helping us.


Tonya2
Posted: Wednesday, March 28, 2012 12:47 AM
Joined: 12/8/2011
Posts: 33


Good to have you back ttom!
Myriam
Posted: Wednesday, March 28, 2012 2:36 PM
Joined: 12/6/2011
Posts: 3326


TommyT wrote:

Been gone since mid February. Had a little trouble with the Alzheimer's  bug! Seems it caused me to have a fit of rage and it took some time to shaked it. Mostly, had to adjust the meds.

 

 
 
Hi, Tom. Am wondering if you would be willing to describe what YOU were feeling and thinking during your trouble. Do you recall what led up to it? Besides feeling anger/rage, what other feelings, if any, did you have? Do you think there was something that precipitated it? What was going on within you? Just curious in case I begin to feel some of the things you felt or thought so that I can, maybe, recall your experience to help myself out.

TommyT
Posted: Wednesday, March 28, 2012 5:40 PM
Joined: 3/23/2012
Posts: 17


Myriam wrote: 
TommyT wrote:

Been gone since mid February. Had a little trouble with the Alzheimer's  bug! Seems it caused me to have a fit of rage and it took some time to shaked it. Mostly, had to adjust the meds.

  

Hi, Tom. Am wondering if you would be willing to describe what YOU were feeling and thinking during your trouble. Do you recall what led up to it?  
 
 
I don't mind telling this forum.It might help somebody. I've got it written down in my little "Composition" book.
 
1) My wife had a synus infection for over 5 months. She was hurting and was not easy to live with, God Bless her.
 
2) one evening, 2/16/2012(I must have been sundowning) we got into an  arguement. I lost control and somebody (not my wife) called the police. She has no bruises but I did kick at her and put a small mark on her arm that was gone the next day.They arrested me (my wife begging for them to not arrest me) and I was sent to prision.(2wks). About 3 days after my incarceration I came back into reallity. Back to being "Tom" and could again reason. "Simple Assult" is the state charge.  My son posted $2,500 bail to get me out of prison.
 
3) From prision I was sent to a Behavorial Health Clinic(2wks)There they treated me in the un-rage ego I call "AL". They only treated the regular "Tom" that has already got 30 years of management training and charm schools. So it was really a waste of time.
 
4) They sent me this nursing home. This place is relatively calm accept it is entirely locked down. At night many of the residence "sundown" and become violent. Others ared always in a deep sence of confusion and walk around crying or laughing. Yet others are purely catotonic.
All of my freedoms have been stripped. I live on the 2nd floor that is all locked down. My room is comfortable but it is costing more the $4,000 per month.Today I had a phychiatrist appointment 2 miles down the roard at the VA. To get me there I had to be walked down to a transportation bus and delivered to the doctors office. All the time with a guarding person with me.
 
5) I now have a hearing scheduled for 5/10/2010. That will determine the rest of my life.

 

I will be requesting counciling for my wife and I at the hearing. Somehow we need to keep the Alzhiemer's rage from taking over. She is in denial and says that I need to work on it, not her.

 

That is the moral to this mess that you all can learn from...

 

1)  You caregivers need to give us patients some slack! Work with us and don't demand.

.

2)  Purchase Long Term Care insurance now!

Later, Ttom


Myriam
Posted: Wednesday, March 28, 2012 5:52 PM
Joined: 12/6/2011
Posts: 3326


Thank you, Tom.  I love your courage and openness. It's very helpful. 
SteveSanJose
Posted: Friday, March 30, 2012 4:15 PM
Joined: 1/3/2012
Posts: 189


A late welcome back Ttom. welcome back to our board. Missed you
Lisa428
Posted: Saturday, March 31, 2012 10:21 AM
Joined: 12/5/2011
Posts: 795


Tom,

 

Thanks so much for sharing what happened to you.  You are so brave.  I admire you.

 

How are you feeling these days?  is your mood and temper under some control?

 

Do you know what meds you are taking?

 

Does the shrink you see have a clue about Alzheimer's?

 

Tom, are you still angry?

 

Is there anything I can do to help.  I'm here!

 

Missing you and thinking of you,

 

Peace and Hope,

Lisa


hopeful30
Posted: Monday, April 2, 2012 2:52 PM
Joined: 12/31/2011
Posts: 64


Ttom, my deepest fear is a nursing home. i admire your strength!! i have had deep rages lately that come out of seemingly nowhere, but i am usually set off by someone doing or saying something to set me off and my controll is not like it used to be. my brain only tells me what is in it not to think first or try to understand. i feel helpless but dont know what to do. its so good to hear from you, i remmember when i first came to the other forum, your support and humor meant so much to me i looked forward to your thoughts so much, keep talking ok??? LORENE is always thinking of you!!!
Iris L.
Posted: Monday, April 2, 2012 5:03 PM
Joined: 12/15/2011
Posts: 16575


hopeful30 wrote:
Ttom, my deepest fear is a nursing home. i admire your strength!! i have had deep rages lately that come out of seemingly nowhere, but i am usually set off by someone doing or saying something to set me off and my controll is not like it used to be. my brain only tells me what is in it not to think first or try to understand. i feel helpless but dont know what to do.

 

 

 

 

Stephanie Z, who was a nursing director with extensive experience with dementia care, has posted often on the Caregiver board for caregivers about how to approach their ADLOs so as to avoid provoking aggression and agitation.   

 

It might be a good idea to read through some of her posts to get an idea of how to work with your family members to come up with plans to improve communication and to help avoid avoidable problems. 

 

I think a lot is known about dementia behaviors in the specialized facilities, but this knowledge needs to be brought into the community before patients get to the point of needing to be separated from their families.   

 

Iris L. 


Lisa428
Posted: Tuesday, April 10, 2012 10:06 AM
Joined: 12/5/2011
Posts: 795


Dear Tom,

 

How are you doing?  Haven't heard from you in a while.

 

Just wanted to say "hello" and let you know I am thinking of you.

 

Please, take care.  Post when you can.

 

Peace and Hope,

Lisa


Geegee
Posted: Tuesday, April 10, 2012 9:12 PM
Joined: 11/29/2011
Posts: 514


Tom, thinking of you.  Miss hearing how you are?  What is the latest with your status?  


Didn't you have your hearing today that determined your future in the nursing home?


Let us know, please!


Iris L.
Posted: Tuesday, April 10, 2012 10:00 PM
Joined: 12/15/2011
Posts: 16575


 Stay strong, Tom!   

  

 Staying calm is a priority!   

  

 Don't let anyone get you down! 

  

 Iris L. 


Lisa428
Posted: Saturday, April 14, 2012 9:50 AM
Joined: 12/5/2011
Posts: 795


Tom,

 

Please post to let me know how you are doing.

 

I am a little concerned that I haven't heard from you in a while.

 

Take care.

 

Thinking of you.

 

Peace and Hope,

Lisa


Sheryl726
Posted: Wednesday, April 18, 2012 7:35 AM
Joined: 11/29/2011
Posts: 521


Tom,

 

Big Hugs to you and yours as you travel this path.  Know that we care deeply for you and have been so pleased to hear from you. 

 

As always your post are very informative and educational to us the caregiver.  Thank you for that.  The insight is most helpful