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inventing life every moment is getting old
Posted: Thursday, September 7, 2017 9:02 PM
Joined: 9/12/2013
Posts: 3608

for some reason I had a bunch of thoughts that were making me laugh out loud as I am lying in bed tonight.

before I could send the thoughts to someone so I could think myself still funny, I forget what it was. Poof.

I have to think my way through brushing my teeth! great now tooth paste is too complex to handle so I am choking in this foam that is supposed to kill off the "sensitivity" as they like to call pain nowadays. a new thing, fluoride pneumonia.

I rarely interact with people and when I do, I can't wait for it to end. every day I realize no one in my real life has ever said anything even mildly sympathetic to me about having Alzheimer's. my kids are busy and far away. Is this because I have dementia or am I obnoxious or smell like inertia? 

I think I am in Hospice so I have a woman to speak to for 30 minutes once every 2 weeks (until "more frequent visits are required").

I'd have more friends in prison, for crying out loud. The isolation when you can't drive, or now cross a street, is bizarre! 

We don't have sex anymore so I listen to true Crime podcasts for hours at a time. and I can listen to the same ones over and over and be glad it is familiar.

Has no one ever "dealt with their diagnosis" by having a farewell honeymoon - just staying in bed and feeling alive? I guess those people aren't posting here.

so even though there was no point to the past hour's above work, this has been good and I appreciate everyone of you, even the ones who only read but have yet to share.

love and courage and whatever else you can get

Posted: Friday, September 8, 2017 2:22 AM
Joined: 8/22/2016
Posts: 263

A post from you is always accompanied by rays of sun peaking through clouds. You're a unique writer and gigantic intellect really, a singular voice in this Alz wilderness, and we want to read you. 

THE Isolation sucks. 

I hear you. 

Posted: Friday, September 8, 2017 11:13 AM
Joined: 2/24/2016
Posts: 1096

Yes alz.  I know the feeling.  I laughed out loud the other day and my DH asked me what was so funny and I did not know what to tell him.  It came and went just long enough apparently to make me laugh.  At least we are laughing.  

You are "still funny" alz!  The more friends in prison line was great.  I knew exactly what you meant and I laughed out loud when I read it.   Thank God you still have your sense of humor.  It is a life saver for me as I see it is for you as well.  Please keep laughing alz.  Who cares that no one knows why!  

I am always so glad to see your posts.  Please keep us updated.

Lots of love to you as always...BlueSkies


Posted: Friday, September 8, 2017 11:34 AM
Joined: 3/3/2015
Posts: 58

our Hospice has a Reiki master and she gave both my husband and I an Attunement.  Find that during those times when my husband and I lie together or when I'm alone and needing peace, I say the phrase, "to the greatest and highest power" and allow the reiki energy to flow through me to him or visa versa.  No matter what you believe this is an exercise in calming spirits.  Such a gentle way to minister to yourself or other creatures, plants and so on.  Can you ask your hospice if they have someone on staff that gives Reike??
Posted: Friday, September 8, 2017 12:42 PM
Joined: 11/18/2016
Posts: 451

Alz+ you crack me up- not that this is a laughing matter., but I literally giggled out loud with your fabulous one-liners! You are on the money with your comments- so true about family and friends- no one asks me how I'm dealing with this bs nor do they care enough to even ask my wife- like "how is she REALLY doing?" Everyone is so into themselves and their misery, that they fill up every bit of their tiny brains with nothing but themselves. I am so amazed by their reaction to my diagnosis. It's almost like I said, "Pass the butter".... no reaction, blank stare, emptiness. How do we interpret that crap? When I do see a reaction, you know, every blue moon kinda thing, I go around trying to make everyone feel better about me having dementia. Like I'm consoling them instead of the other way around! All my former colleagues jumped ship the day I left- no friends around. I signed up for these "retirement" classes- you know , classes like "Retirement Planning" and "Memoir Writing"....I laugh because before retirement I never had enough time to do the things I wanted to do. And now that I'm retired, I feel like I'm looking for things to do to fill up my day! I thank God that right now,I get to do whatever I want- I don't know how to deal with this-  the last time that I got to do whatever I wanted, was like NEVER!! There was always a job, kids, obligations, responsibilities! Ugh! I seldom did whatever I wanted in life, my entire life. But now, things are different-it is my job right now, to have the time of my life- for as much as I can and as long as I can. I have earned that right, I deserve it. 

 All that is asked of me every day is to wake-up- nothing else- no grocery shopping or house cleaning now that I'm home, just to wake-up. I am literally adored, yet I still find fault. I'm finding this time of solitude, rather than isolation, to be very comforting and insightful. I've had many "aha moments" when the fog lived and i understood things clearer. Before my brain was way overstimulated with noise and bells and kids and stupid admin-now it is calm and I can focus on what really matters, as well as having the quiet in order to listen to God. Dementia is a very humbling experience.


Posted: Friday, September 8, 2017 1:38 PM
Joined: 9/30/2015
Posts: 1155

Obrien you have come a long way, I am truly amazed at how you have blossomed. Alz you are a wonder and I love you dearly...
Posted: Saturday, September 9, 2017 8:26 AM
Joined: 5/20/2014
Posts: 4408

Yes to all...perhaps we could manage to get our selves locked up in the same prison.
Posted: Saturday, September 9, 2017 8:05 PM
Joined: 11/18/2016
Posts: 451

I can guarantee, we'd have a blast! And the best thing is that we could blame all our crazy antics on the dementia and get away with it!  Sign me up- 3 square meals a day, one teeny tiny cell to clean, every other week, cause we'd have a roomie-sounds like a plan! We can learn a craft and even get our degree while serving time!
Posted: Saturday, September 9, 2017 9:21 PM
Joined: 2/24/2016
Posts: 1096

I like the idea of a "teeny tiny cell to clean".  It's wearing me out trying to keep up with our house, big yard, 3 dogs and a cat!  Yes, give me a teeny tiny cell!

Does sound like fun in an odd way.  Would make a good reality tv series..."Dementia Prisoners" or "Cell Block Dementia".  Bet people would love to watch it.  Could be very entertaining.

Posted: Sunday, September 10, 2017 9:15 AM
Joined: 11/18/2016
Posts: 451

Don't get me started, Blue!
Posted: Monday, September 11, 2017 4:34 AM
Joined: 9/12/2013
Posts: 3608

hey - i think I post at 4am because I am avoiding the "crowds".

laughing is the most normal thing I do. 

thanks for getting it, and the prison life for lighter crimes sounds a lot like assisted living. to get into a dementia village when there are maybe 5 in the world at a huge cost is out.

appreciate all the support here. I spent 3 days watching hurricane images on tv but I did get out of bed and walked, and puttered.

today a basement repair guy is coming. My back is not going to allow me to lift boxes anymore so they are going into a clogged mess. I wanted it sorted out more so they would not say "NO!" right away.


I had switched cbd oil and as I suspected, the strain of plants used to make the oil can be key to whether or not it works. The new oil did not give me the cognitive boost the old one did. I am going back to the non thc CBD oil for day time (seemed to work yesterday).

Also the last UTI over high school reunion debacle took 6 weeks to recover from! Lying down saps my strength and too tired to be up and about = downward spiral. Nature taking over.


my daughter is coming in 2 weeks and said she will help me get rid of more stuff. can't wait to see her. 

our summer did NOT end, we got another 2 weeks of warm and sunny!

Keeper is hanging in there and we are again on solid-ish ground.


was it O'brien who said the response she gets is like "pass the butter"? ha! True though. Very weird.