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I am the first to tell you this disease sucks.
Michael Ellenbogen
Posted: Saturday, December 26, 2020 8:35 AM
Joined: 11/30/2011
Posts: 4456


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


abc123
Posted: Saturday, December 26, 2020 8:54 AM
Joined: 6/12/2016
Posts: 2477


Hi Michael,  I have come to appreciate the special moments with my Mother, no matter how brief they are. My patience is also slowly improving.
Deanna_M
Posted: Saturday, December 26, 2020 9:10 AM
Joined: 12/24/2016
Posts: 275


Hi Michael, thanks for asking. 

My parents were very difficult people and my family life was dysfunctional. When I became my mother's caregiver, the difficult relationship continued. But, as her Alz has progressed, our relationship has evolved. She has mellowed and I have grown into a new role. I am grateful for this new relationship. While not perfect, it is so much better than it was for 50 years. And, when she passes, I will hold onto this part of our family history.


harshedbuzz
Posted: Saturday, December 26, 2020 10:06 AM
Joined: 3/6/2017
Posts: 4008


My father had a challenging personality; I believe he had significant mental health issues that went untreated until the last 18 months of his life. I was not his favorite and when she died, our relationship went from lukewarm to adversarial. As he crossed into the later stages of the disease, I was able to see a glimmer of the sweet natured little boys his aunts and brother described when I was younger. We parted on good terms and for that I am grateful.

HB
LadyTexan
Posted: Saturday, December 26, 2020 10:42 AM
Joined: 12/21/2018
Posts: 1438


My DH has early onset AD. I cannot speak for him. 

As a caregiver, I believe I have re-prioritized the things in my life. More specifically, many things I felt were important to me are not important anymore. They are merely "things". 

What is important to me now is:

 

  • Appreciating the limited time I have with my husband. 
  • Loving him and letting him know he is loved. 
  • Ensuring he is receiving the care he needs.
  • Being gentle with myself.
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 am grateful for the memorable moments and blessing in my life. 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.

 


GothicGremlin
Posted: Saturday, December 26, 2020 4:22 PM
Joined: 4/7/2019
Posts: 501


I had to ponder that question for awhile before answering.

It's really tough because my sister was only in her later 50s when she was diagnosed with early onset, and she realized that there were going to be so many things she wasn't going to be able to do in the future. She and I have had some difficult conversations about what's to come. And now, as she slides into early stage 6, seeing the additional confusion and general decline set in, is really hard to take.

But, yeah, I think there were some good things that came of it too.

  • Our extended family has rallied around her, which has been nice to see
  • I've become more patient and my problem solving skills are through the roof
  • We're very different from each other, but I've discovered that we both have reserves of strength I never knew existed
  • We've always had a good relationship, but it's gotten better over the time since her diagnosis.  It means that I'll be extra unhappy when she forgets who I am, but that's a different post for a different day and a different year.  <- That realization leads me to -
  • I'm much better at living in the moment than I have been in the past

LicketyGlitz
Posted: Saturday, December 26, 2020 7:11 PM
Joined: 2/3/2018
Posts: 1184


Michael, thank you for asking this question of us. This thread is incredibly inspiring to me. I would like to ask those of you who have responded if I could reprint your answers in a future Stumped Town Dementia blog post. I would love for those readers to be inspired by your answers too.

If I have your permission, please let me know if you'd like to be credited anonymously, or if I may use your Alzconnected forum name.

 


zauberflote
Posted: Saturday, December 26, 2020 7:47 PM
Joined: 10/24/2018
Posts: 1587


Michael, I'll speak for Mom first. I learned how to use the patience which has come to me over the tumultuous 30 years of our autistic son's life. I learned more about Mom's life than I might have otherwise. I learned who I want to be when I grow up (Mom), and get dementia (again, Mom). I have learned an incredible amount from this forum, and better know how I should prepare for the near future (if I'm like Mom, which I very much am, I have until about age 77 or so going on as I am currently at nearly 69. And then the decline will really begin.)

I will speak of my husband's mother now. She never displayed late symptoms of dementia until the last few months of her life, but she died of COPD, old age, and aspiration pneumonia. I was a full member of the 4-woman team who did the care management and the doctor appointments, and the visiting twice a week, and the general "keeping Granny at her home" day-to-day life. I learned better what I already knew-- that I married into the best possible family. 

I have met you, Michael, and Iris, and KawKaw. You are all three who else I want to be when I grow up.

Lickety, not sure anything I've said is worth quoting, but go for it with my blessing if you like anything. You may use my first name, Chris. 


Bamboo2
Posted: Saturday, December 26, 2020 10:33 PM
Joined: 9/7/2020
Posts: 28


My sister and I have talked about this often.  Our dad was diagnosed with dementia two years ago, and I developed a softer spot for him.  He became more gentle, and I became more patient and compassionate.  Probably a correlation there! When he couldn't remember a word, and I could fill it in for him, I was his rock star.  It made our conversations more interactive, like a fill-in-the-blank quiz.  I started to call him every night, and he even wrote in a Christmas card how much those nightly calls meant to him.  He has expressed more love and gratitude in the past two years than in all the other years combined.

Another really positive thing is that I've become very close to my sister.  She struggled with alcoholism for years, and this year made a commitment to sobriety, which we are all grateful for. She was able to be there for Dad and our family as we took steps to place him in MC.  She said that without AA, she would have bagged out at the last minute when it came to being there for Dad and us during the struggles with his sundowning and eventual move and placement.  My sis and I have really leaned on each other these past two years, and I'm so grateful for her love and support.

A third positive is that I've been able to express my care preferences to my husband if/when I am diagnosed with dementia.  

Thank you for the question, Michael.  Lickety, you are welcome to share my comments and use my screen name.


arubafun07
Posted: Saturday, December 26, 2020 11:15 PM
Joined: 8/24/2020
Posts: 5


Hi Michael.  My husband and I care for my mom who is late Stage Alzheimers.   I have learned it is an honor and privilege to care for my mom considering she took care of me since birth.  She deserves to be treated with love, compassion and respect.  To know that there are many times she does not even know who we are she is calm in knowing that she feels safe and loved with us.  This disease is horrible but we will shift our universe to keep her safe in hers.  It truly is the moments few and far between that make each day a little easier to get through.
GothicGremlin
Posted: Sunday, December 27, 2020 12:12 AM
Joined: 4/7/2019
Posts: 501


Hi Lickety - if there is anything useful in my post, please feel free to use it.  It's okay to use GothicGremlin too.
Michael Ellenbogen
Posted: Sunday, December 27, 2020 7:57 AM
Joined: 11/30/2011
Posts: 4456


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. 


Michael Ellenbogen
Posted: Sunday, December 27, 2020 9:01 AM
Joined: 11/30/2011
Posts: 4456


I am always okay with sharing any information I write. Feel free to use my full name. As I am already out there.

 

On anther note I sure hope people don’t think what they share her is confidential as this is a very public forum and any one as access to it by doing any type of search. Everyone must assume all of this is public. 


Michael Ellenbogen
Posted: Sunday, December 27, 2020 9:09 AM
Joined: 11/30/2011
Posts: 4456


zauberflote I don’t believe I know who you are and how we met. Send me something privet if you want to recall my memory. I am forgetting so many these days. Thanks 


LadyTexan
Posted: Sunday, December 27, 2020 9:57 AM
Joined: 12/21/2018
Posts: 1438


Lickety - 

Permission granted to reprint my post and use my Alzconnected forum name.

Kindly,

LT


KatieKat1
Posted: Sunday, December 27, 2020 10:13 AM
Joined: 4/30/2020
Posts: 79


Michael, first I want to thank yo for being part of this board.  I think it is great you can still do what you are doing with having Alzheimer, and I pray you will continue to do as well for a long time.

I am not sure what good can come from this disease since it affects everyone who is in contact with the person that this horrible disease robs the patient and the loved-ones of so much in various ways.  I am the sole caregiver of my husband with some help from our daughter.  The strange thing about this disease is that it has been harder for me since there is no communication between myself and DH.  With this disease, he first had difficulty knowing details, like the time, his birthday, being in the military, and then had Primary Aggressive Aphasia.  DH was also a manager for a Fortune 500 company and was a pilot, golfer, boater, etc.  When this disease hit him it took away his quality of life to longer be able to golf, building thing (he liked to construct things like decks, etc.)  For me the positive part is it has brought myself, daughter and husband closer together because she knows I need her more and since she has been a registered nurse for many years and has worked with Alzheimer patients, has become a person I can turn to from time-to-time and is the voice of reason and calm.  She has a full time job and three children, so I do not want to take too much of her time.  For myself I also feel I have a different outlook on life and now aware of the struggles many are going through, both caregivers and patients with this disease, and feel that so much more needs to be done in research for the patients since to me this illness is just as serious as Cancer, which my husband also had 14 years ago, and I found I struggled through that with worry, but my DH pulled through it and it was a few years before he was himself again. 

So, for some there may be positives - and one is that we may become more patient because if we are not then both patient and caregiver suffers and stress in itself is a killer.

 

 


Beachfan
Posted: Sunday, December 27, 2020 1:23 PM
Joined: 2/1/2018
Posts: 1093


Lickety,
I responded to Michael on the Spouse/Caregiver forum.  Same question, answers varied.  You may quote me; I am now and forever, a "Beachfan".

zauberflote
Posted: Sunday, December 27, 2020 4:12 PM
Joined: 10/24/2018
Posts: 1587


Michael, we have never met in person, sorry to make it sound that way! I only meant "met" you on this forum and through your writings and interviews.
GothicGremlin
Posted: Sunday, December 27, 2020 5:10 PM
Joined: 4/7/2019
Posts: 501


KatieKat1 - my sister also has primary progressive aphasia.  It's a bear.
Michael Ellenbogen
Posted: Sunday, December 27, 2020 7:35 PM
Joined: 11/30/2011
Posts: 4456


Zauberflote - Not a problem. I just wanted to make sure I did not forget who you were if I did meet you. I meet so many people and don’t remember them. Glad to know you here. 


Michael Ellenbogen
Posted: Monday, December 28, 2020 7:12 AM
Joined: 11/30/2011
Posts: 4456


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. 


Maggie092
Posted: Wednesday, December 30, 2020 8:59 PM
Joined: 12/20/2020
Posts: 11


Hi,

I'm not sure on what good comes from this illness; I've said this on previous posts on my social media platforms that this is a selfless illness, and to hope for a cure or something to slow down the process. Maybe the only good can come from it is telling stories, or memories, of those affected with the illness; I'm so thankful for my curiosity of a mind to ask my Mother, before she got worse with her diagnosis, would tell me stories from her childhood/adolescence (I said, tell me a funny story from your childhood, I always loved those), and it gives me something to talk about with her, alongside memories that I shared with her that she may still be able to remember. Probably the only good thing is becoming a storyteller.

Have a Happy New Year!


 
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