Caregiving resources for every stage of the disease.
RSS Feed Print
I don't know what I am talking about, yet no brakes. New fun
alz+
Posted: Thursday, July 12, 2018 10:28 AM
Joined: 9/12/2013
Posts: 3256


at 7am I was considering suicide but found America's got Talent Highlights had been recorded and watched that. Then the vibrations in my stomach area became more intense, like when you find yourself feeling someone's eyes upon you.

before I was diagnosed in 2013 I had a year of constant swearing. My mother was stunned, I remember saying to her, "It just comes out, I can't stop it." I think my Dad had also sworn a lot. Well, swearing is back in the cycle and so is depression.

****

my self care theory was bare bones:

 a room and/or place to be left alone

allowed to walk over wooded hills where I live

someone to drive, get groceries, do heavy lifting

conserve money, live best on least, pare down to avoid being "put" somewhere

* I forgot what this was about.  The Anxiety thing in the gut! something happened last week with an online friendship and in a fb forum where my responses were seen as callous and cruel. This panic that I had now crossed a line and used the internet my last connection to living beings except husband (who is more silent) and dog (who avoids me) and now had hurt others. I could not forge an apology.

same week my spiritual guide told me to leave internet and if I had to comment do it only out of love and kindness. 

can not hold a thought, not with more oil, not with more sleep. The hospice nurse always asks if I have been to a doctor. I asked her why and she said that is large part of reason they come. to help people with dementia to know someone is looking out for them, and is coming again so they need a doctor less often. 

Then I understood the  world of people with dementia making their way to the end of their lives. It was beautiful.

first loss? driving? then handling finances. last friend dies. husband takes 3 years to adjust. freedom, like river drying up. when the bed is sought, the curtains drawn, still the worry "am I wasting my time?"

**** dementia - a process of moving toward defenselessness

every day I mentally tally the financial benefit to my survivors vs my lying in bed watching excellent movies bored and feeling like I am now in a dinghy being towed behind a yacht and the tow line keeps getting thinner.

* I spent some time editing this because after reading Amor Fati message to Canada, my heart cracked open. I don't know what it means, except I love all of you so much. we are mystics


jfkoc
Posted: Thursday, July 12, 2018 1:21 PM
Joined: 12/4/2011
Posts: 15773


and I have an enormous amount of love for you and in addition a huge amount of respect
Canada111
Posted: Thursday, July 12, 2018 8:03 PM
Joined: 8/22/2016
Posts: 225


Alz+ 

I want to second jfkoc's message of love and respect. 

I want you to know I love you enormously. 

Though we can never know exactly what the other with dementia is experiencing, I feel I know you. I know you have always tried to be helpful and have the biggest heart. You are an amazing writer. You say what I feel but you are smarter and stronger and have so much more courage. Plus you are funny. You retain your sense of humor and humanity through this. Something about your essence supersedes all of the insanity that goes with this disease. 


Amor Fati
Posted: Friday, July 13, 2018 8:31 AM
Joined: 1/9/2016
Posts: 63


You go girl! You are showing us the way.
Andrew60
Posted: Friday, July 13, 2018 10:46 AM
Joined: 7/17/2017
Posts: 342


I hope you are able to keep posting for a long time because I still have a lot to learn from you.

Over the last 2 years, your posts have proven to me that there can still be a quality life after diagnosis. It definitely is not the life you envisioned for yourself, but I know you have lived it to the fullest. Thanks for sharing your life!


alz+
Posted: Friday, July 13, 2018 8:09 PM
Joined: 9/12/2013
Posts: 3256


andrew and every one -

when diagnosed, I was a basket case and Iris patiently kept telling me about how anxiety took 50% of cognitive power away, power which could come back if I stopped being so anxious.

blah blah blah, forgot how I dealt with that - maybe when I got the cbd oil and could think a little better.

one thing that helped me was jealousy of a woman who posted on board about how gloom and doom it seemed and she was off on another adventure. how was it possible? another couple sold the house and went off in an RV. Hmn. Michael bought a boat, Iris went to China.

in the midst of my complaining I found what I wanted was free (surprise NOT as I am so economical). I wanted to dig rocks, walk the dog, sleep when I felt like it. I taught myself how to pass for normal at the local pool.  Then I wanted to laugh again, this was after I had taught myself to smile again (use mirror and stretch mouth and try to think of something smiley - we forget how to smile, I think it is a real thing).

I started to laugh at myself. I thought I would write a terribly funny book and make a million dollars and change the world. No, no Paris either. No clean basement. No art studio.

The anxiety thing is back, not sure what it is, a buzzing trembling in abdomen, and no more rock hunting, more time in bed. But then let time in bed be ok, or even nice.

a roof, clean water, heat in winter, a nice mattress... a life of luxury.

(I worked on this to make it read better.)   love you all.



llee08032
Posted: Saturday, July 14, 2018 6:22 AM
Joined: 5/20/2014
Posts: 4382


Love you, ((((((((Alz+)))))))))), peace and calm
 
× Close Menu