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$1,000 REWARD
Michael Ellenbogen
Posted: Tuesday, October 29, 2019 1:06 AM
Joined: 11/30/2011
Posts: 2654


 Please share this below on all of your social media list and platforms. I am tired of wasting my time. While she did not suffer, I suffered watching her decline and not being able to communicate with her because our dementia. And yes, we both spoke a second language yet we could not communicate. Thanks for your help!

 

 

“Mom died from #dementia and I Live with it. REWARD of $1,000 to the first person that can make this happen. This must happen and it’s also the last item on my bucket list. @TheEllenShow @realDonaldTrump @POTUS “


Amelillo99
Posted: Tuesday, October 29, 2019 11:49 AM
Joined: 10/7/2019
Posts: 18


What kind of dementia do you and your mother have?
Michael Ellenbogen
Posted: Tuesday, October 29, 2019 12:14 PM
Joined: 11/30/2011
Posts: 2654


Don’t know for sure. I may have FTD and my mother was never diagnosed with the exact type. They said Alzheimers but there is no way they can know that with the test they gave her
Amelillo99
Posted: Tuesday, October 29, 2019 12:26 PM
Joined: 10/7/2019
Posts: 18


Does your mother also had early onset dementia?
Michael Ellenbogen
Posted: Tuesday, October 29, 2019 2:16 PM
Joined: 11/30/2011
Posts: 2654


No she got it around 84. 


alz+
Posted: Tuesday, October 29, 2019 8:26 PM
Joined: 9/12/2013
Posts: 3549


when you say she did not suffer, was she relaxed about the changes? My father did not seem to be suffering, he had hours of sitting in shade looking out at a pond. He liked to laugh about stuff. There were episodes but he did not suffer as much the person who had to handle it.

would like any advice on what it looks like to not be suffering, fearful, frightened - I am kind of in shock and I don't know what it would look like or feel like to relax about drawing inward. 

How wonderful you wanted to communicate with your mom. That isn't always the case.

interesting post.


Michael Ellenbogen
Posted: Wednesday, October 30, 2019 7:24 AM
Joined: 11/30/2011
Posts: 2654


Sadly, I had it right but AA removed the link that I had that went to my Linkedin account. They refused to keep it up even in honor of my mother who died. I really believe those folks do not want a cure to dementia which is so sad. I dint know what I am allowed to do to point to my page. It on my Facebook also. This is what it is called.  “Dear President Trump, Please Help me complete my Bucket List. Not much time left. @realDonaldTrump @POTUS” 

 

I hope you all can find this. Please help me share this and I will pay the first person that can set the meeting up and it happens $1,000.00 if I get to do this. If I have this opportunity I can assure you I will change the course of dementia in the world. I have no doubts.

 

AA is a sad place. 


Michael Ellenbogen
Posted: Wednesday, October 30, 2019 7:32 AM
Joined: 11/30/2011
Posts: 2654


Good news, if you search on this it does come up at the top on google. "Dear President Trump, Please Help me complete my Bucket List. Not much time left. @realDonaldTrump @POTUS" 

Just add that link to the message you display.

 


Michael Ellenbogen
Posted: Wednesday, October 30, 2019 7:49 AM
Joined: 11/30/2011
Posts: 2654


ALZ+ I wish I could truly say she did not suffer but I don’t know that for sure. I know there are many times I do because of the disease but I also do not share it as there is no sense it making it worse for others. The biggest suffering for me is watching those trying to take care of me and tings as they do such a terrible job at it. It frustrates the hell out of me and sadly they will never get it no matter what I do.  No matter how much you try to train folks they will just continue to be themselves. They just don’t want to change even if its in the best interest. They just rather complain on how hard it is to be a caregiver then to make it easer on their selves when they easily could.   


Iris L.
Posted: Wednesday, October 30, 2019 5:05 PM
Joined: 12/15/2011
Posts: 16187


Michael, what type of caregiving do you need now?  Where is the conflict between what you need and what is given to you?  

Iris


Michael Ellenbogen
Posted: Thursday, October 31, 2019 7:29 AM
Joined: 11/30/2011
Posts: 2654


Iris I could go on an on but I will just give you one example. The biggest frustration is she is not me and will not learn what I tried to teach hear before I got worse. So dam stubborn. For example my prescription ran out las month and the doctor held it hostage for a few days. Sadly I suffered from 3-4 days because I was in pain. All because she did not give the doctor hell and to allow it to run out. I always had an extra month’s supply at all times. While I have problems with money I have more sense then her in many cases on how it should be spent or given. I am willing to bet that are the issues many people with dementia go thru. It not the disease that sucks but those who are taking care of you cause many of the frustration. I can see why may get divorced as at least at that point you can understand why you would not get the help you need. Sadly there is no good answer to this issue. 


Iris L.
Posted: Thursday, October 31, 2019 6:36 PM
Joined: 12/15/2011
Posts: 16187


The reason I asked, Michael, is that I believe many frustrations can be avoided by preparation. For example, my pharmacy uses automatic renewal of regularly used prescriptions.  Thus I don't run out.  Also, they like to dispense a 90 day supply.  The pharmacist will fax the doctor for a new prescription when the old one runs out of refills.  Easy- peasy-- no frustration in the area of meds.


As far as money goes, all of my money, and a great deal of it, has gone for my trips.  This probably will be my last big trip.  My mortgage is paid off, and I chose to get a new car.  Otherwise I don't anticipate any unexpected big expenses.  Everything can be planned for, including end of life care.  At this time in our lives, we should be realistic and make realistic financial plans.   


I have been reading the posts from many members as to how to plan financially for the future.  I am making plans for myself based on what I have learned from these wonderful members.  Crushed on the Spouse/Partner board wrote a great post recently about the distinction between assets and an income stream, something I didn't know before.  He is adamant about getting professional advice from an elder attorney for realistic plans.


I really don't see the point in arguing.  Although most people are clueless, there are a few knowledgeable people around to get competent advice about decisions and financial planning.  It seems to be worth it to consult one or two trusted professionals and not to have family tension.  We can plan, but no one knows the future.  The Bible says we are called to peace.  I want you to find peace, Michael.


Personally, I think caregiving is hard because people just don't know what to do and what decisions to make.  It's odd, but only the members here seem to know.  If a caregiver is not reading these boards, I don't know how they can have an understanding or any sense of quietude about what they are doing.


Iris



Michael Ellenbogen
Posted: Friday, November 1, 2019 6:30 AM
Joined: 11/30/2011
Posts: 2654


She did have automatic renewal and that is part of the problem as she depended on that and did not think ahead. The doctors office thought I was due to an appointment and did not renew. It was an error at my expense and left to be in pain . Do you think any one gave him hell for it. Of course not. That is why i don’t want to be around as I get further along. They would leave me suffering in pain if I cannot speak for my selve.  


Iris L.
Posted: Friday, November 1, 2019 11:31 AM
Joined: 12/15/2011
Posts: 16187


I am so sorry Michael!  It is terrifying to have to depend upon undependable people.  Computers are impersonal but they are reliable mostly.  Living in earthquake country, we are advised to keep a one week stache of medications for emergencies.  


My emergency stache has saved me in the past when I ran out.  I hope you can do the same.


I am leaving in a few hours and will be away from the internet for at least a day or so.  I'll post when I can.


Iris