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Done
obrien4j
Posted: Friday, June 9, 2017 4:21 PM
Joined: 11/18/2016
Posts: 451


Done with being awoken by a  racing heart

With battling early morning traffic

Then the bells and the screams and the noise

It never stopped

Done with answering questions. the same questions over and over again 

And they say I have dementia.

I endured with God's strength

Done with the anguish upon hearing the door open and praying it wasn't the boss

There to question and criticize and judge

Me and the little I really know.

Done with wanting to learn, having to learn but not learning

For nothing much stays for very long. 

Done with taking notes of the notes I never looked at in the first place. And for the reminders. 

Done with meetings, conferences and phone calls.

Its all over in a second

I breathe a sigh of relief as tears roll down my cheeks.

 

 


Mimi S.
Posted: Friday, June 9, 2017 6:48 PM
Joined: 11/29/2011
Posts: 7028


Well written, Jean

And folks say there's nothing good about Dementia.


BlueSkies
Posted: Friday, June 9, 2017 10:47 PM
Joined: 2/24/2016
Posts: 1096


Obrien,  relief with tears says it all.  Good to be done with all that stress, but oh what a tragic reason to let go.  

Glad you are able to write about it.  It helps with the pain of what we are dealing with.  Keep writing, keep posting.  We are here for you...

Love, BlueSkies  


Jim Broede
Posted: Sunday, June 11, 2017 5:40 AM
Joined: 12/22/2011
Posts: 5462


The nicest thing about life. It's never done. As long as we are alive. --Jim
obrien4j
Posted: Tuesday, June 27, 2017 10:54 PM
Joined: 11/18/2016
Posts: 451


So many moments here lately, that  I've wanted it to be done- the pain, the unknown, the fear.  I am  looking  at "the end" and the word that comes to mind is devastation. I'm at the edge of a cliff, waiting anxiously for someone to push me off- what will be next? What will I lose? Will I remember my name tomorrow? Will I get lost coming home from the park? What about pressing the gas instead of the brake- how many times has that happened?  Should I stop driving now? Oh God no, my independence.  The pendulum swings the other way and I see it for what it really is and a deep sadness comes over me. I hadn't gone there before, didn't want to, wouldn't dare to. Friends say I have a lot of time for dementia to kick in, they have no clue. No, friends, that's now, every waking moment when I drop something, can't find the right word, get confused which way to turn towards home- it's NOW, it's building up, it's moving. Slowly, thank God, but moving nonetheless, there's time to plan, at least we know- I wish I didn't know right now. It's time to live- to do what you love, travel, see the world, shove everything you've always wanted to do in your life into the next couple of years-but I think, why bother, does it really matter since I'll probably forget about it anyway. I can't seem to hold onto one emotion thru this existence for I fear that is all I will be doing in the end, existing. For who? For what? 

For the first time, I love life, I don't want to die this way, but neither do you, right? I go to the extreme and imagine the worst- I have to so I am prepared- but in all actuality, I won't have a clue. I  consider my options and yes, I do have options- it is my turn to decide how this will play out. I decide if I want to live "whole-heart"-edly or in a mildly functional state of depression.I decide how long I want to participate in this existence. But what if....

So for today, I decide to smile again and put those thoughts on the back burner-they'll be there tomorrow. I relax and breath a sigh of relief that today was not the day.


chrisp1653
Posted: Tuesday, June 27, 2017 11:16 PM
Joined: 1/23/2017
Posts: 1286


At our house, we just pull the knobs off, so the back burners can't be used. If it can't be done with the 2 front burners, it doesn't need to be cooked.

Oh, and to echo Mimi, well written, indeed !

 

Chris


MPSunshine
Posted: Wednesday, June 28, 2017 7:21 AM
Joined: 5/21/2016
Posts: 2007


Hi, obrien, the thing is, it's not done. We're in the middle of it. Try to eek some moments of joy out of this whole mess we call living. All of us are in this boat together. Moments of joy, and then let them grow!
Mimi S.
Posted: Wednesday, June 28, 2017 3:47 PM
Joined: 11/29/2011
Posts: 7028


Hi Jean,

You are such a good writer. How can you, as a member of this community, put that talent to good use?  Writing fort your local media? Going on an appropriate radio program?  We do need more Early Stage folks speaking up.  
Have you contacted your local Alz. Assoc? I know you want to get a group started. Sometimes it's easier to just get the group and then when you have a group that's been going  a few months, contact your local to get listed. You might begin with just a Memory Cafe type of group. You get together with other PWDs and just socialize.

 

I had one going for a while, but it fell apart.  There were a few who profited from attending but as their ability to drive was hampered their spouses didn't see the need  for the group.  UGH.
Meeting with others diagnosed, personally, is so important!!!

Or maybe, you've had enough of dementia and want something totally different.  A writing group? Ask at your library. I got (already had been) involved with my local Historical Society. What interests you?

Have a good evening!!!


obrien4j
Posted: Wednesday, June 28, 2017 3:56 PM
Joined: 11/18/2016
Posts: 451


Great ideas, Mimi- thank you for the compliment, as well. I did apply for the early onset advisory group but was not chosen- but that doesn't mean I can't start my own group. Good point about participants not being able to attend as they advance- but who knows, as interest increases maybe we could get a service to pick up people. I don't know- but I think my new purpose in life will definitely have something to do with dementia.
Mimi S.
Posted: Wednesday, June 28, 2017 4:08 PM
Joined: 11/29/2011
Posts: 7028


Jean, Have you tried getting involved in your local organization.

And keep trying each year. Remember that only 12 folks are chosen yearly from the entire country.  Compare that with the number of us active Early Stagers there are.


obrien4j
Posted: Wednesday, June 28, 2017 5:32 PM
Joined: 11/18/2016
Posts: 451


They said they only choose 10 out of 40 something who had applied. I will start looking into it, Mimi- I just can't exceed volunteer hours stipulated by disability. Thanks for your ideas and for looking out for me.
Mimi S.
Posted: Wednesday, June 28, 2017 5:57 PM
Joined: 11/29/2011
Posts: 7028


Jean,

And I think those limits on how many hours you can volunteer are there for a reason. Nor do you want to volunteer at any position that causes stress.


llee08032
Posted: Wednesday, July 5, 2017 8:26 AM
Joined: 5/20/2014
Posts: 4408


Greatly appreciate your writing Obrien. Work is creating  lots of anxiety and stress these days but at the same time there is fear about not working anymore and who I'll be w/o my work. What will that look like? Naturally, I think of all these things I could do with more time on my hands, how I could better take care of myself and maybe get involved in advocacy... I think I'm afraid to stop working!
Jim Broede
Posted: Wednesday, July 5, 2017 11:54 AM
Joined: 12/22/2011
Posts: 5462


There's such a thing as good stress. It ain't all bad. Something to think about. --Jim
Mimi S.
Posted: Wednesday, July 5, 2017 12:28 PM
Joined: 11/29/2011
Posts: 7028


In the context of the two people, both diagnosed with dementia and  discussing the stress of maintaining full time employment, how is that a good thing?
jfkoc
Posted: Wednesday, July 5, 2017 1:12 PM
Joined: 12/4/2011
Posts: 19642


I have never heard anyone say that stress is good for a PWD. Quite the contrary. Caregivers are always educated on the fact that it has a negative effect on their loved one and that it is incumbent upon us to do everything we can to avoid this.
jfkoc
Posted: Wednesday, July 5, 2017 1:14 PM
Joined: 12/4/2011
Posts: 19642


I have never heard anyone say that stress is good for a PWD. Quite the contrary. Caregivers are always educated on the fact that it has a negative effect on their loved one and that it is incumbent upon us to do everything we can to avoid this.

I concur with Mimi.


Jim Broede
Posted: Wednesday, July 5, 2017 6:56 PM
Joined: 12/22/2011
Posts: 5462


In my incredible lifetime. I’ve had far more good stress than bad stress. That can happen in a reasonably well-managed life. As a journalist, I had deadlines to meet. I learned to enjoy that.  Especially if it was a well-written story. Brief bouts of stress have been shown to enhance learning and brain function. Good stress keeps us feeling alive and excited about life. When I used to run 7-minute miles. It was stressful. Physically. But I had a sense of accomplishment. It was good for my mind. And my sense of well-being. We care-givers can learn to manage our lives in ways that bring about good stress. To relieve the bad stress. Talk to any psychiatrist or psychologist. They will tell you. There is such a thing as good stress. When I’m taken to task for my postings on the message boards. That could be deemed bad stress. If I allow criticism to bother me. But I don’t. I’m thick-skinned. I’m excited. Because I’ve learned to take life in stride. Makes me jubilant. Yes, a form of good stress. --Jim

 


Mimi S.
Posted: Wednesday, July 5, 2017 7:05 PM
Joined: 11/29/2011
Posts: 7028


Jim,

PWD also read and post on these boards. They see stress as not good for them.  That is their current experience.


Mimi S.
Posted: Wednesday, July 5, 2017 7:07 PM
Joined: 11/29/2011
Posts: 7028


PWD also read and post on these boards. They see stress as not good for them.  That is their current experience.
Jim Broede
Posted: Thursday, July 6, 2017 12:18 AM
Joined: 12/22/2011
Posts: 5462


Bad stress isn’t good for anyone, Mimi. Even for those of us that don’t have dementia. All I’m saying is that there’s bad stress and good stress. Bad health and good health, too. And good vibes and bad vibes. Good politics and bad politics. Good people and bad people.  Good weather and bad weather. There’s good and bad in this world. I wish we all could be protected from the bad. But it ain’t gonna happen. Just like now. There’s good English and bad English. I practice ‘em both. I don’t let it bother me. I’m a cool and mellow cat. Often free of stress – that is, the bad variety. I know how to cultivate and embrace good stress.  Those with dementia also are capable of experiencing good stress. Maybe even you, Mimi. Moments of pure happiness. Elation. Don’t you occasionally feel alive and excited about life? Yes. Yes. Good stress. I wish it for you. For Andy. For Blue Skies. For so many of the good souls on these message boards. You are still splendidly functioning human beings. I see it. In the postings of those diagnosed with dementia. Wow! It's wonderful. Good wonderful. . --Jim

 


chrisp1653
Posted: Thursday, July 6, 2017 2:00 AM
Joined: 1/23/2017
Posts: 1286


Ofttimes better than either of us, Jim. Certainly better poetry and grammar than me. Maybe less abuse of the English language than me, too, now that I think of it.

 

Chris


llee08032
Posted: Thursday, July 6, 2017 7:56 AM
Joined: 5/20/2014
Posts: 4408


Obrien- I'm impressed at all you are doing so far! You loved those kid's and always will and now will find others to love also. That's what you need and who you are and what will give you purpose. I wish I could join your group! You give me hope. Thank you!


Good stress = winning the lottery; getting married; getting a job promotion; having a baby; making a new friend; accomplishing a goal; setting a new goal etc.


julielarson
Posted: Friday, July 7, 2017 9:56 AM
Joined: 9/30/2015
Posts: 1155


llee I am glad you said what you said.. Yes stress can be both bad and good.. I actually took up buying lottery tickets twice a week because I want the good stress of wining.. LOL!
lovinglife123!
Posted: Tuesday, July 11, 2017 2:04 PM
Joined: 7/11/2017
Posts: 1


For who, you ask. For me
llee08032
Posted: Wednesday, July 12, 2017 7:42 AM
Joined: 5/20/2014
Posts: 4408


Oh Julie! I hope you get some good stress from trying to figure out how to spend the money you will win