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living alone with ALZ
alz+
Posted: Friday, June 5, 2020 12:05 PM
Joined: 9/12/2013
Posts: 3560


checking in...much love to everyone

I am living in an over 55 trailer park now, just me, no dog. My dog is still living at the house where I was supposed to be staying with father of my kids. I miss her company.

* about people trying to live alone with dementia, one woman wrote a year or so ago about being so scared and I knew what she was talking about. There was NOTHING to offer her in terms of help. I still manage the "fear" which feels like a waterfall of trembling in my gut. I have it today.

 regarding living alone, set up environment for your needs. Proper environment is huge part of living in peace. Wrong environment huge part of stress reactions. Stress reduces cognitive function 50%. Getting rid of stress is biggest good thing I have done for myself.  

living alone Cut: being shadowed, language corrected, mistakes pointed out, irritation with ____, treated as unwanted second class person etc. 

Easy comfortable place to live + cut off stressors = restored function,  contentment. 

Without CBD oil I am in bed 20 hours a day, with cbd out of bed 12 hours a day.

 My life is how to get from waking up to going back to sleep. I walk in the park (have not driven a car in 4+ years). There is a small pool I use. Watch TV. My daughter comes every 4 - 6 weeks for a few days. We have resolved family issues in big way.

I do not reveal my condition anymore unless absolutely necessary. I try to pass as normal. If I do not try to carry on a conversation it seems to work. My appearance is least of my concerns but has huge impact on interactions. If leaving the trailer now, even to just get mail, I brush my hair and arrange better clothing and smile. 

***

I witnessed 2 episodes of violent abuse of a woman with dementia while in hospital recently for 6 days. I tried to intervene and stop it, police were involved. I reported it to confidential hospital line. The trauma remains with me. 

My cousin said when he was a chaplain he witnessed abuse in nursing homes back in 1970's and agreed staff thinks it is just part of handling ALZ people, with coldness and force, and worse - since the person is likely not able to report it themselves, even forgets it happened so it goes on. Our brains don't allow us to champion our right to fair care. Maybe the climate is changing since we all now see what abuse looks like on news 24/7.

Because I delayed request to the ER hospital to change their record of my emergency room visit last year for smoke inhalation after wild fire, where a tele psychiatrist said I was attention seeking borderline personality disorder person who pretends to have dementia (this was told to ER staff by "friend" who brought me to ER and let me stay in his shed post fire so instead of treating lungs they had tele shrink evaluate me for suicide).  I did not know this until I got paper record in mail. 

I believe that false medical record followed me to hospital when recently sent there for major problem and that false info affected my treatment. Obtaining the paperwork took me months, filling it out took me months. I was finally able to send corrections to medical record pages this past week. Things that need to be done sit and wait, sometimes for a year until  for an hour the clouds part -and I can finish them. 

***

 I notice some kind of cbd sales thing here today, don't know how to figure out what is legal and what is real so I go to a local real dispensary. In California dispensaries are able to deliver or do curbside refills. It is the thing that lets me live alone, cook, wash my clothes, make a bed, walk. When I forget I end up anxious and in bed all day.

***

wish I had given away or sold off my stuff when it was possible, wish I was back home walking in the woods. 

***

If you are living alone - make an easy safe comforting space, set up food delivery if you can not drive or handle a store. Allow for boredom, loneliness - when I let myself stare off in space it is incredibly interesting and calming. Be physical, walk, yoga, swim, work out, dance... Find ways/things to help with trembling anxiety and use them. Learn some panic techniques (breath work is surprisingly good, have move train of thoughts to another track, Be Here Now, some use sedatives, I smoke a few puffs of cannabis that makes me sleep or stuff to give me energy to walk.

My daughter brought a rocking chair and it has been HUGE help. Watch Netflix and rock, helps everything. Outdoor rocker would be divine. Someone make a lay down rocker - adult cradle - with rocking motion, sounds divine.

Since living alone I am as cautious as I can be to not fall or trip, have list to remind me to turn off water, stove, close and lock doors etc. 

love and courage

(3 hours to write this, still not as sensible as intended, why I stop posting)



Unforgiven
Posted: Friday, June 5, 2020 2:06 PM
Joined: 1/28/2013
Posts: 2661


I am so very glad to see this update fro  you and no that you are doing well.  The last few months have been so hard on alk of us that you were in my thoughts.
Iris L.
Posted: Friday, June 5, 2020 5:48 PM
Joined: 12/15/2011
Posts: 16610


It's so good to hear from you, Alz+.  It sounds like the 55 and up senior trailer park is working better for you than your prior arrangement.  Yes, we need peace and quiet and consistency in a very low stress environment.   I am still isolating in my home, but recent events have stressed me out.  


As a matter of fact, I was so stressed that I forgot to pay two bills which were due on the first until today.  It has gotten to the point where I can no longer listen to the radio and expect to get any work done.  I'm also misplacing things again.  Too much is happening around me.  My brain cannot handle so much.



I hope you continue your routine in your home and stay safe.  Write when you can.


Iris


Lane Simonian
Posted: Friday, June 5, 2020 11:17 PM
Joined: 12/12/2011
Posts: 4837


I am very happy to hear from you as well, alz+.  It is good to know that you are still benefitting from the CBD oil and that overall you are doing all right.  I can only imagine how much you are missing your dog and upper Michigan.  Still, the situation you are in now has some good to it as well.

Even though it is difficult to write, your voice is so unique and so important that I am glad that you take the pains to do so.  You are an advocate for many.


Jo C.
Posted: Saturday, June 6, 2020 4:39 PM
Joined: 12/9/2011
Posts: 11232


Well, hello alz+.  I am  really delighted that you came to talk with us; I have missed you and have been wondering how you are doing.

Your new home sounds like a calm, serene oasis and nobody is badgering you.  That rocking chair seems like a winner;  great idea and gift from daughter.  Good ideas to be cautious of fall risks and also to make notes to yourself regarding the water, stove, etc. Very wise of you.

You and I are both transplanted Yoopers and even though we are not facing the dread winter storms and ice, we will always miss our "home of the heart."  There is no place like the U.P. no matter how long we have moved to another place.  The weather is so much better out here, that is for sure which is a huge difference every time winter hits and we overall are better for it.

You are such an excellent writer and have much good to share.  I know it is hard for you to write these days, but any time you can come and talk to us is a real treat.

 I send you warmest of thoughts and best of wishes,

  J.