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I am the first to tell you this disease sucks.
Michael Ellenbogen
Posted: Saturday, December 26, 2020 8:37 AM
Joined: 11/30/2011
Posts: 3634


 But I was just wondering if you feel anything good came from having it? 


SSHarkey
Posted: Saturday, December 26, 2020 2:38 PM
Joined: 3/15/2018
Posts: 618


Hey, Michael! I can definitely say that it has caused us to appreciate life and family far more. Our hearts are more focused on gratitude and and what we value in life.
4Grams
Posted: Saturday, December 26, 2020 3:11 PM
Joined: 1/13/2017
Posts: 58


Michael, I hate this disease and it is hard to find good when your LO is trying to find his way. 

We have had funny moments and it has brought us closer. I want the man I married back but God has another plan. 


Crushed
Posted: Saturday, December 26, 2020 8:46 PM
Joined: 2/2/2014
Posts: 6272


There has been absolutely no upside whatever for us. DW worked very hard her entire brilliant career. We had carefully saved for retirement. 2012 was our planned retirement date for her That was the year she got the EOAD diagnosis. She was 60. She never got to enjoy her grandchildren. Am I bitter  YES even after all these years.
60 falcon
Posted: Saturday, December 26, 2020 10:58 PM
Joined: 11/16/2018
Posts: 140


Lol, did anything good come from Alzheimer's?  It has stolen my life, my DW's life, caused all but one friend to disappear, removed any semblance of a normal life, it destroyed any chance of a hard earned retirement, I don't do anything for myself anymore, and on and on.  It will kill my DW if something else doesn't.  Caring for her may kill me first.

Right now, I don't feel that anything good has come from this.  Maybe I'm "blind" to anything good that comes from this hell. I just don't see it.


Doityourselfer
Posted: Sunday, December 27, 2020 7:09 AM
Joined: 9/5/2017
Posts: 763


I haven't found anything good about this disease.  It's a nightmare of all nightmares.
Ed1937
Posted: Sunday, December 27, 2020 7:35 AM
Joined: 4/2/2018
Posts: 4029


Tomorrow we will be married 63 years. This disease has brought us closer than ever. I appreciate the small things more. I found out just how strong my love is for my wife. And I found out that our family is stronger than I ever imagined.

Yes, this disease is ripping our lives apart. But that wasn't the question.


Michael Ellenbogen
Posted: Sunday, December 27, 2020 7:59 AM
Joined: 11/30/2011
Posts: 3634


 This is some of the good that came from it for me.

 

  • I got the opportunity to travel so much sooner then I ever thought I would and made so many memorable memories for my wife and I that she talks about all the time. It real made her happy.
  • I have gotten to meet the best minds in the world related to dementia
  • I have been a pioneer and will leave a lasting impression for what I have done for this disease and others.
  • I was given the opportunity to come to the rescue of so many and help them just a little on how to deal with this disease
  • I created an army of dementia advocates all over the world including Africa where I have contributed to saving lives
  • I have broken so many records that I am even surprised that I was able to do all this.
  • If it was not for my dementia I would have never had that great boat and still cannot believe it was ever mine.
  • Now we are near to building our dream home and don’t think this would ever have happened and will leave my wife very happy if I should go. And of course she is retire early to be with me.
  • I am spending more money than I would have because I am no longer in control of it
  • I am more patient to others in need or who struggle with mental issues.
  • I was able to do a bucket list and still be around - Ran out of things to do
  • I accomplished the most exciting thing in my life by spending two day in Geneva with all of the ambassadors of the world at the first dementia conference at WHO. I had my own seat and mic and tread like royalty like the others - Does not get any better than that and not sure I can ever top that one
  • I have stared so many dementia programs all over the world that are now running on the own
  • I have gotten many world leaders to take action for the cause and to contribute millions and millions of dollars.
  • I fought against many organizations and governments to change laws
  • It made me appreciate life and what I have
  • Most thankful that I met George Vradenburg from USAgainstAlzheimer’s and so other great people who do so much for this cause with out any reason to get something in return

 

 

There are probably a lot more but I think you get the point. 


Beachfan
Posted: Sunday, December 27, 2020 1:08 PM
Joined: 2/1/2018
Posts: 640


Today is our youngest granddaughter's 6th birthday.  She has never known her "pop" without Alzheimers.  We live on our daughter's property and see "Allie" every day.  She is a rough and tumble, typical 6 year old, youngest of three.  But she has the most uncanny empathy and a loving, caring nature that astounds me.  She races down here every morning to "fix" pop's breakfast before school, she feeds him cookies and candy, ("don't bite my finger, pop"), she loves to "lax" on the sofa and read to pop, she brushes his hair and leads him from point A to point B with care.  She is discouraged that he is unable to understand what she tells him and was absolutely blown away the other day when she asked, "Do you love me, Pop"  Yes.  "Am I your best friend, Pop?"  Yes.  There are some hidden gems in this disease.  I told my daughter last evening that I was going to start paying Allie as a caregiver.  

Michael, you, too are a hidden gem!  Thank you for all you do.  


Lynne D
Posted: Sunday, December 27, 2020 1:41 PM
Joined: 7/21/2020
Posts: 37


Perspective, appreciation, a sense of purpose in caring for another.
Ed1937
Posted: Monday, December 28, 2020 7:01 AM
Joined: 4/2/2018
Posts: 4029


Lynn, that little 6 year old is a keeper. It wouldn't surprise me if she didn't have a career related to this disease. You are a lucky grandmother.
Michael Ellenbogen
Posted: Monday, December 28, 2020 7:14 AM
Joined: 11/30/2011
Posts: 3634


 For those of you who could not find some good in it I am really sorry. It may not always easy to see but I do hope this makes you think about it and just maybe some will come your way.  I have always learned in life that no matter how bad things are some good always come out of that bad. It may just be on how we think about it. 


LadyTexan
Posted: Saturday, March 13, 2021 8:26 AM
Joined: 12/21/2018
Posts: 845


The journey is difficult and lonely and financially devastating and exhausting and unfathomable to anyone who has not experienced it in real life.

Michael asked a very insightful question both here and on the Caregiver's forum (see the post at https://www.alzconnected.org/discussion.aspx?g=posts&t=2147555107 ).

As awful as this disease is, in my experience, there has been good to come from it. For example, 

I am stronger than I was. I am more patient than I was. I am more forgiving of myself now when I make mistakes...I have learned to ask for help without thinking I am weak. I have learned to accept help with grace. These are good things that likely would not have happened without my husband's illness. What a shame it took this crappy illness to change my outlook on life.

Yes, the journey ahead is difficult. I am not obtuse to the truth. Recognizing the good (no matter how small) helps me carry on. 

This disease is heart breaking. 

This disease caused me to change my perspective and priorities. 

 


Crushed
Posted: Saturday, March 13, 2021 9:14 AM
Joined: 2/2/2014
Posts: 6272


Michael in all honesty, that you can write this post at all

 means the disease has not yet really attacked you.  My wife wrote her last email in 2015

Good luck


Michael Ellenbogen
Posted: Saturday, March 13, 2021 6:27 PM
Joined: 11/30/2011
Posts: 3634


Crushed - I am the first to tell you that I agree with you in some way. I am not a believer in god but I must ell you that so many things have been happening to me that I can not understand and I do believe there must be something watching over me. While I can not explain it but it has allowed me to continue my advocacy in ways I never though could ever be possible

 

I should not even be her to write this to you at this moment. Today we were traveling from my builder’s office to me new home. I was driving about 65 miles per hour on one of those back roads. I was coming up on an intersection where a big SUV with a trailer was stopped. The person suddenly pulled out into the intersection had had blocked most of it.  I dot even know I did this but my wife says I blew the horn which made the person stop. In my eyes in a flash I thought we were both dead or seriously injured as there was no way around this.

 

I hit the break very hard and then released it and swerved to the right and I believe I went on two wheels and turned back just in time to the left to miss the intersection corner. As I looked back in my review mirror it almost seemed as I had hit the car as it was that close. I pulled over to the side of the road and I was so thankful as this was a real miracle that I and my wife are untouched. I also have no doubts that the person in that car would have been killed at the speed I was driving to hit them directly.

 

So I will say I am a very luck person in so many ways. I will need to add this to my list. My wife cannot even believe how I was able to react and to avoid this accident. I don’t know who to thank but I thank everyone for this miracle as I am the luckiest person on this earth. I think the man up there is not ready for me because I am doing so much good for all of those with dementia and their caregivers. I will continue to change the world. This may sound cray but for a none believer I have no other explanation and I am a very skeptical person. 


gm gypsie
Posted: Sunday, March 14, 2021 1:09 AM
Joined: 7/6/2017
Posts: 153


    You know Michael, you are an amazing person.  you have worked so hard and done so much ,  I'm glad you are able to appreciate the good that has come to you in fighting  this disease. .   You have been  a strong advocate for people with dementia.  One good thing I have found  in this  horrific disease is  meeting the people who are here. 

     Now that  Jerry's gone I find that I actually cry myself awake. In the mornings I wake up thinking , I'm sorry, you had to suffer in the end  but it's over now and I 'm happy that he's free. The good I can say that has come out of it is that I  found that  I am strong, while I wasn't always sweet and patient with him, I learned to be compasionate.   I was guilty of being cranky but  I would  try to make up for it with many hugs .  The hugs were great therapy for both of us.

    It's easy for me  to say now, that it over for us, I've learned  a lot about  love and pain and suffering and forgiveness. The good that has come  in this awful journey  is I'm grateful that I was able to help him to the end. 

 


abc123
Posted: Sunday, March 14, 2021 12:23 PM
Joined: 6/12/2016
Posts: 1468


Michael, you may not believe in God BUT He believes in you.
French
Posted: Sunday, March 14, 2021 2:59 PM
Joined: 6/13/2020
Posts: 191


Michael, when we had the diagnosis, 2 years ago, I was thinking my partner will fight this disease as you seem to do.

But he was very depressed and perhaps already advanced in the disease. At this time he already wouldn’t have been able to write the kind of text you write. A text message was already difficult for him.

So yes, perhaps it could have bring good in our live. But for me, for the moment, it’s only 

- caring

-have to stop  some international responsabilités because I don’t know what to do with him when traveling 

- a lot of stress when he is alone

- tired because he wakes me up in the night and/or very early in the morning (6 am on Sunday, I would like to sleep two hours more)

- lot of time to organize everything for his care

- having to do everything in the house : if the heater breaks, it’s for me, water flood, me, cleaning, me, washing machine, me, mowing, me, cooking, me...

- feeling alone and grieving the companion I have lost. He still know who I am but hasn’t shown any feeling.

In conclusion, sorry, even the good mood days, I can’t find anything positive in this life. I would certainly have like to engage myself in association but I really have no time for that, the little time I have, I keep it for my children who also lost a part of their mother in this disease

 


Michael Ellenbogen
Posted: Sunday, March 14, 2021 4:22 PM
Joined: 11/30/2011
Posts: 3634


I was also depressed and the doctors helped me a lot. As far as writing with out word I would be screwed. It is my life saver.


Laurention
Posted: Monday, March 15, 2021 11:48 AM
Joined: 11/4/2014
Posts: 397


Michael ....With all due respect sir, you can read, write and operate a motor vehicle ?

 I find myself agreeing with "crushed" ...You have not experienced the full impact of this horrible disease.

I recently lost my bride own 48 years. A once brilliant woman reduced to life in a wheel chair and needing to be hand fed.

I don't think I had any more than 2 hours uninterrupted sleep in the final few years before I made the gut wrenching decision to place her.

Just wondering . How many times have you woken up to a bed full of poo?

Nothing nothing nothing nothing !!!!! Good comes out of this horrible disease !

 Mike