RSS Feed Print
Do you want to live or die?
Michael Ellenbogen
Posted: Thursday, July 20, 2017 9:21 AM
Joined: 11/30/2011
Posts: 4460


 I read so many post out here and I see to many focusing on all the negative issues. That is prescription for disaster and early death.  If you change your mindset and focus on the good and what you still can do then life will be so much better for you. You must find a new purpose in life if you now longer have one. That is critical. And most important stop feeling sorry for yourself. That is the cards you have been dealt and there is nothing you can do to change it. 


Andrew60
Posted: Thursday, July 20, 2017 10:57 AM
Joined: 7/17/2017
Posts: 342


Well said Michael. I dont know what my future holds, but I know Who holds it. Im confident my faith will get me through any bad diagnosis that may come my way. Every day I try and make better than yesterday.
Iris L.
Posted: Thursday, July 20, 2017 11:08 AM
Joined: 12/15/2011
Posts: 18513


Agreed, Michael.  I encourage PWDs to develop a philosophy of living with dementia, as I have.  I may have dementia, but dementia doesn't have me!  If I have dementia, I'm not going out like a victim!  It's vital to have a fulfilling mindset.


Iris L.


grandmalynda
Posted: Thursday, July 20, 2017 7:19 PM
Joined: 12/3/2016
Posts: 374


This is actually a new mindset for me.  I have wasted a lot of precious time dwelling on the negatives in my life.  After much soul searching I am now on a new path towards giving myself a happy and fulfilling life.  I intend to give myself time to make these necessary adjustments but am anxiously awaiting contentment.

--Lynda


Iris L.
Posted: Thursday, July 20, 2017 8:32 PM
Joined: 12/15/2011
Posts: 18513


Good for you, Lynda!  Everyone on earth has an expiration date.  No one knows exactly when that date will come.  For some of us, who think we might know something about that date, we can try to do something about it.  Tess, on the Caregiver board, had a wonderful sentiment that I appreciated.  She said, when her mother was diagnosed as having AD, she decided to make sure she had as much fun as possible.  So she took her on trips to Japan and stateside, they went on outings, to events, shopping, and did lots of fun things that her mom enjoyed.  Now, her mom is not mobile, but she is glad they had those experiences together.  


Another friend of mine used to say it was good for us to travel and to do things when we were young, because when we got older, we might not be able to.  Sadly, my friend passed away unexpectedly during a crisis with her chronic illness in her early 50s, sixteen years ago.  


What is a fulfilling life will be different for each of us.  Some may have a big bucket list, and some may take pleasure in their everyday activities.  In the fall, I have a project at home that I want to get started on.  I am going to do as much as I can for as long as I can.  My 88 year old cousin had a saying, "wear out, don't rust out!"  When it comes time for me to sit down, I can sit down with satisfaction.


Iris l.


llee08032
Posted: Friday, July 21, 2017 6:45 AM
Joined: 5/20/2014
Posts: 4408


It is not the end of the world. 
alz+
Posted: Saturday, July 22, 2017 2:06 PM
Joined: 9/12/2013
Posts: 3608


It is natural for many people to focus on the dread after a diagnosis, especially since there is not a clear path to get through this.

On the other hand, when and if we get bored with our misery and living nightmare scenarios, we have more motivation to enjoy life than ever.

Like Iris I developed a philosophy, and while I go off track I can get my life back just by remembering this is my place in the natural world at the moment and how best to spend my time well.

In each of our lives we have to deal with where we will live, how we will make that happen, and then the possibles. 

Also we may be alive when someone figures out what the problem is and develops a treatment. In that case, all the inner work we have done to live with this condition will be another bonus.

How fortunate we are can get lost if all we do is mourn what might have been.


Iris L.
Posted: Saturday, August 5, 2017 10:10 AM
Joined: 12/15/2011
Posts: 18513


ttt for our new member Ome.   This is good encouragement!


Iris L.


BlueSkies
Posted: Saturday, August 5, 2017 10:29 PM
Joined: 2/24/2016
Posts: 1096


Okay Michael, I just can't let this post slip by with everyone happily agreeing with you because they don't want to be seen as "negative". 

 I think what you are posting is wrong.  You are discouraging others from posting when they are having a hard time or feeling depressed or anxious.  I just don't understand that at all.  Isn't that the reason most of us with dementia joined these boards?  To share our fears and struggles on our journey with others who are experiencing the same.  I did not join these boards for idle chat.  I came to be able to have a safe place to share and vent with those who would truly understand.  How can I share, be validated and comforted by my friends if I am being made to feel I am being "negative" if I do?

I have seen no negative posts on this EO board.  I have only seen my friends post about their frustrations, struggles, fear of future, etc.  All things that need to be shared, acknowledged and discussed to help us through these times and to know we are not alone.

If others think what I say is wrong and agree with Micheal then tell me what posts have been negative?  I have not seen any negative posts.  How sad when we can not even get validation on the EO board for how we feel with out being seen as being negative by some members.


Iris L.
Posted: Sunday, August 6, 2017 2:03 PM
Joined: 12/15/2011
Posts: 18513


Learning that you have dementia is probably one of the worst news a person can receive.  But we need to know that, although our lives will change, we don't have to be miserable.  We still can find joy and have fulfilling lives.  We have to help each other in this.  The outside world doesn't have any encouragement for us, IMO.  I found my encouragement right here when I was in a deep depression.  I hope to be able to encourage others, especially the newly diagnosed.


Iris L.


BlueSkies
Posted: Sunday, August 6, 2017 6:02 PM
Joined: 2/24/2016
Posts: 1096


Okay Iris, I do not disagree with you and never said anything different.   I am addressing Michael's accusations  that members are " focusing" on " negative" issues.  Are CG's told the same thing on the CG boards?  No, they are allowed to vent and their feelings are validated and they are comforted by other members.  No one tells them to stop posting on all the heartache they encounter and to just focus on the positive because there is nothing they can do to change things.  How absurd.   I would like to know of all who agrees with Michael what posts did you find negative and don't want to see any more?
chrisp1653
Posted: Sunday, August 6, 2017 7:17 PM
Joined: 1/23/2017
Posts: 1327


My innards are going back and forth on this. I really do want to focus on positive things, and I want to be able to turn ugly things around, so that they can be an encouragement. But , you know, sometimes something is just bad, and there's no getting past it. In fact, the only way for anything good to come out of some things is to let the ugliness out into the light of day. Dementia is as much a part of life as anything else, and that means there are glorius triumphs, tremendous inroads being made, and loved ones with dementia who can bring an entire family together. This is all terrific stuff, but I can't ignore the fact that there are also those whose decline into the depths of this disease is rapid, messy, and just plain ugly. There will be families torn apart, and people who refuse to step up to the plate. I want for beauty to rule the day, and I believe that overall, it will – but the only way to recognize that beauty is to realize that there is some ugliness.

I guess my take on all this is to say that I have no love for dementia. I have no love for what it does to people, but I deny it the power to ruin the world. Even as the dementia attacks my Barbara, it allows me to grow into a better person. Even as it sometimes drags BlueSkies down to a place she knows and hates, it allows her husband to be the man he probably didn't know lived inside him. Life is a roller coaster, for sure, with ups, downs, curves, and straightaways. We just have to jump on and see where it goes.



Chris


Mimi S.
Posted: Sunday, August 6, 2017 9:11 PM
Joined: 11/29/2011
Posts: 7027


 the My two cents, short as usual. Radar wrote something about the right to die. I responded. 

I see both sides of this discussion. Yes on these boards we have have many scary thoughts and depression. We have been given wonderful support by our fellow PEDs.

 


BlueSkies
Posted: Sunday, August 6, 2017 9:55 PM
Joined: 2/24/2016
Posts: 1096


I absolutely see both sides as well, but I think we should allow PWD the right to vent and share fears and struggles just like the CG's are given the right without being labeled "negative".  

I just don't want Michael's post to keep someone on these boards who is having a hard time from posting, in fear of being labeled "negative".

We need to be here for each other in good and bad times, but even more so during the bad times.


llee08032
Posted: Monday, August 7, 2017 10:52 AM
Joined: 5/20/2014
Posts: 4408


I'm having a hard time now. Feeling negative and depressed which I just started a thread about.

I trust everyone will be there and support me. Even Michael. Circumstances and life changes do not allow us to be positive all the time. We all walk in our own shoes and can only guess how the shoes of another feels. Right now these shoes feel all shot out and tired... scuffs and holes in the soles.


BlueSkies
Posted: Monday, August 7, 2017 2:00 PM
Joined: 2/24/2016
Posts: 1096


Thank you llee.  That was my main point I was trying to make.  Of course we all try to be positive whenever we can, that goes without saying, but "We can not be positive all the time".  Even without this disease we could not, but with this disease it is even more difficult.  We should not be discouraged in sharing when we feel bad or have scary thoughts.  Sharing them makes them less powerful and getting comfort from others eases the pain.  Honest sharing on this board should always be welcomed.  The good, the bad and even the ugly.

Responded to you on your "depressed" thread llee.  Please check it out.  Hope you feel better soon.


julielarson
Posted: Monday, August 7, 2017 2:43 PM
Joined: 9/30/2015
Posts: 1155


I would hope that people feel free to post where ever they are in their struggle because that is the way it is supposed to be on a site like this.. Yes sometimes people are going to be negative and that is ok.. It is where they are and we should encourage them to come here and post to get support.. We are here to support everyone in their travels with these illnesses.


kdwcpa
Posted: Monday, August 7, 2017 2:52 PM
Joined: 5/26/2017
Posts: 21


This is a very hard area to address.  I have a strong faith, and so am not worried about dying.  I can actually see a lot of positives to it.  As much as we all want to go on as normally as possible, we all have to realize the effect on us and on the ones around us.  I am having to sell my business, that I love dearly (yes, I have been blessed to have a profession that I love).  

It is really hard not knowing what is going to happen tomorrow or in 2 weeks.  When will I have to give up driving, when will I forget my friends and / or where I live.  It is not depression it is honest feeling of dread.  Death is not the end but is certainly will end this hell we are all in on this site.


Iris L.
Posted: Monday, August 7, 2017 3:57 PM
Joined: 12/15/2011
Posts: 18513


Last night I was up until 5 am.  That's what I do when I 'm in crisis mode.  I've been in crisis mode for a while despite going on my trip.  I have been examining why I am back in crisis mode.  I pulled out everything that I know, including what I have learned from members on this board.  My conclusion is that I'm not going to stay in crisis mode, I'm going to do something about it.  I still have the power to make changes for my life.


I don't think there is a prohibition against posting what is going on in our lives.  We have always been supportive.  That's what we're here for.


Iris L.


grandmalynda
Posted: Monday, August 7, 2017 5:11 PM
Joined: 12/3/2016
Posts: 374


Good for you Iris.  Stay strong and move ahead.  We are very fortunate to have this community to lean on when needed and to support others in their time of need.

--Lynda