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shaking from email exchange - cousin says I am pretending
alz+
Posted: Wednesday, April 3, 2019 9:14 AM
Joined: 9/12/2013
Posts: 3608


I have a cousin who lives in Minnesota and we had become friends after I moved back to north woods where she grew up.

Last Christmas I was distraught and had started living alone a couple months before. She had told me she was having a breakdown and wanted to come stay at my house. I put clean sheets on a bed and that was all I could do. Told her to come and use the house like a motel room but I don't socialize much. She said she was bringing her gun, I told her NOT TO MY HOUSE and she didn't come because of the gun thing. We texted for 4 days to help her not kill herself (or someone else). 

Then she quit speaking to me.

Today she wrote me that I don't have Alzheimer's and everyone knows it because I "use big words" still. She said I am "just depressed and have anxiety". She said I only went to 1 doctor and on and on. She has "seen people with ALz and they were not like I am" said I was "trying too hard to have what my Dad had".

I feel like a bomb went off in my head. My body started shaking and I have feeling this is going to drain me for days.

I just don't handle this sort of stuff anymore, can't afford the down time on top of regular down time. Yes I edit my emails and posts and clean them up as I have for 50 years as a writer.

I feel like I am not dying fast enough for her, my sister and brother who have also said the same about me "You write too well to have Alzheimer's." She told me to  stop "embracing ALZ" and know people would love me anyway.

I was part of 10 year research alz study in Madison Wisconsin and they noted severe decline and called to tell me I had it and would not be able to participate anymore. Have seen a few doctors but I don't need to go to a neurologist every year. There is no reason my feet are curled under from anxiety, that I ... don't have to explain here.

So I told her to have a great life and leave me alone. Now I get why she and my sister and brother think I am PRETENDING.

I used to try to explain things and work out problems but this really pissed me off. 

any advice on handling this? My usual way has been to explain more, educate. I have even had friends from boards who have told me I don't really have it, that my decline is "too slow", etc and would just walk off the shock and try to reason with them.

Can't/won't do it anymore. I am so weak in the legs from being accused of malingering and enraged.

Help




Jo C.
Posted: Wednesday, April 3, 2019 10:28 AM
Joined: 12/9/2011
Posts: 12895


You certainly did not deserve this, and I can well understand how deeply upsetting it was for you; also, you are not alone in having such a dismaying experience.   Quite a number of us have run into this.

Sometimes, no matter how we try to explain, or how we try to educate, some people are NOT educable and they will insist on sticking to their biases and false beliefs no matter what. 

Some may even prefer sticking to their false biases so THEY can feel a bit superior.  She has no actual power over you, so do not give her any.

I ran into this with family members, especially a sibling when my Loved One had dementia; they would not believe no matter what; even when I sent copies of the MRI and specialist reports.

What did I decide to do?

I decided to let go.

Nothing would ever change them, I needed to change me and not let them "in."

So . . . . to keep my own internal peace, and to keep from lashing out in anger when pushed to the wall, I no longer took call conversations or answered dyspeptic emails or other messages.

Phone calls?  I often let them go unanswered. If I took a call from a particularly offensive person and if asked how things were going, I would say, "Just fine, nothing has changed," and then change the topic AND soon said, "Sorry, have to go, someone is at the door; or . . . . have to go, a pot is boiling on the stove" . . . . or whatever.

Emails?  Did not answer them often. If I did, it was short with NO added information; if they asked how my LO was, I would say, "Fine, nothing has changed," and then wrote nothing further. 

You cannot change those false beliefs.  Trying will only frustrate and deeply upset the equilibrium you are managing to hang onto what with all you have happening right now with the changes and impending move.

Also dear Alz+, consider the source.  From what you have written, this is not exactly a well-balanced person.  AND . . . . no need to help others who have deep dysfunction; that was a whole lot of drama with her and her gun. 

I decided long ago that I am a, "No Drama Zone."  Period. Actually quite liberating. 

By the way; my step-dad had Alzheimer's Disease; he had a course of just over 20 years and was high functioning right along until his death from an unrelated condition.   Sometimes a family member questioned whether he really had AD because he communicated well and seemed "normal, BUT oh yes; he did indeed have Alzheimer's.

 You are an awesome writer, we all love to read your Posts; BUT that does not mean that you do not have Alzheimer's Disease.   People with dementia do write and some write books.  Writing has been part of you since forever; you were born with that talent and it will stick with you for a very, very long time.

Because you have so much happening and coming at you so hard and heavy, it can make other negative events such as this one, seem so much more hurtful and difficult to handle; it is all in one big bubbling pot.

If this were me, and I know I am not you; I would let go. Poof!  I would not continue to communicate with this person and give my head time to get back to regular simmer rather than boiling.  No need to respond; just eliminate the negative.

You are an awesome person doing the very best she can under very difficult circumstances; I so admire you.

Warm, warm hugs and wishes for peace being sent your way,

 J.


alz+
Posted: Wednesday, April 3, 2019 11:37 AM
Joined: 9/12/2013
Posts: 3608


JoC -

you took time to write all of that for me.d was perfect. By the time I got to the end I was in tears - my heart opened.

I sent apology for being harsh with her and after reading your thoughtful wise response ... it is sinking in.

Maybe she thinks it will "give me hope". The gun thing was really awful for me, I have been at the end of a barrel and will not tolerate someone angry and upset (or anyone) in my house with a gun. She is gay and thinks people are out to harm her. She feels she has to be ready at all times to stand up to that and I don't know what has happened to her that might explain her need for a loaded weapon. I didn't even realize how weird that was until you mentioned it.

I sat outside in sun with my dog and took a puff. Came back and read your response. My God you are a blessing.

Thank you so much for saying about the long time ALZ patient. I some times feel guilty for living so long, not matching the expectations.

This was so healing. Within hours of having breakdown you comforted me back to "able to carry on the day".

I am so overwhelmed. Thank you so much.


Mimi S.
Posted: Wednesday, April 3, 2019 11:50 AM
Joined: 11/29/2011
Posts: 7027


Dear Alz+,

You certainly don't need that. I think many of us PWD have had encounters with those who don't believe our diagnosis. Don't try to change them, just ignore.


Iris L.
Posted: Wednesday, April 3, 2019 12:04 PM
Joined: 12/15/2011
Posts: 17945


Ditto Jo C. and Mimi.  I have been told the same thing, and worse.  They don't know what they are talking about.


It is IMPERATIVE  for us to live in a NO-DRAMA ZONE.  What makes other people think it is okay for them to rain on our parade? Let it go, Alz+!  You have enough to think about now.  Keep calm and carry on! 

Iris


alz+
Posted: Wednesday, April 3, 2019 2:59 PM
Joined: 9/12/2013
Posts: 3608


OK. after I made peace with her I found an email she had sent this morning, OMG.

Thank God Jo C said "unstable person" this morning cause it was nasty and felt dangerous. My cousin is like 5' 11" and weighs 220 add a gun and the rest of it! Then I recognized I have always been a little cautious, fearful of her moods.

 Can't babysit that now. Blocked her.

  - would any of you ever think to insult and threaten someone hanging on by a thread from illness or whatever? Said I "should stop embracing the idea of having your father's illness" and "helping your Dad thru an illness isn't anything special, everybody does it".

wow. waiting for the brain quick delete thing to kick in! where is forgetfulness when you need it? crazy town stuff.



jfkoc
Posted: Wednesday, April 3, 2019 4:37 PM
Joined: 12/4/2011
Posts: 20782


Alz+....some people are not nice, some are mean, some are flat out ignorant. 

Your cousin reminds me of my brother and when he would upset me my husband would say like Jo said above "Consider the source".  She deserves none of your time or space.

Your cousin knows nothing and has nothing but bad intentions. If she ever gets through to you and you feel the need to respond merely tell her that you are eternally grateful  to her for the enlightenment. I don't know how she would have anything further to say.

 


a_step@a_time
Posted: Friday, April 5, 2019 11:19 PM
Joined: 11/21/2015
Posts: 237


Alz+ I am so sorry you have encountered all this! You have every right to tell someone no guns in your house! You need to take care of yourself. Glad you blocked this person. You describe lots of red flags. Good for you, that you recognize them.  I do find people who do not really know how dementia works and that every day is different for the patient.  I am wishing you well! Peace to you!
alz+
Posted: Saturday, April 6, 2019 5:30 AM
Joined: 9/12/2013
Posts: 3608


when replying to an important response and by the time the window opens to type you forgot who it was and what they wrote!

Step - JfkOC

.  about "red flags" missed !!!

I am expert at dismissing red flags in name of "compassion". Learning from all of you that I still have boundaries and rights. My body reacted with storm of anxiety shaking weakness cause it felt like I was about to get robbed harmed hurt when cousin started in about my "infatuation with Alzheimer's" cause it was creepy familiar.

the hyper overreaction to feel threatened to my core when someone starts saying "You don't have alzheimer's cause you type" -

 My family never once said one understanding sympathetic kind thing to me after I was diagnosed, instead they demanded I show "proof" I was diagnosed!  Then they banned me from having info on what my mother was doing to family financial - inheritance info (stealing it from me). My father had promised me support when I could no longer work, when he died my mother said "No. "  I had to take disability social security at 50% cut  to get medicare and live.  My cousin was doing same sort of stuff.

 Biggest accomplishment in my life so far is start to protect myself. People here can see clearly when I can't and I know they give good advice I can trust. Thank you all.

*****

Keeper brought me food and cooked different things for me to have during week. He rubbed my feet and let me go on about the spat with cousin. He says, "Get it out of your system" and that is exactly what telling the story does for me. The power of compassionate listening at home on the boards. The power of sharing a story.

so onward, remember to trust my gut and avoid treachery as best I can. avoid toxic people. get porch swing at my new home, always wanted one. moving forward

love and courage


jfkoc
Posted: Saturday, April 6, 2019 9:52 AM
Joined: 12/4/2011
Posts: 20782


I have, more than times than I would like to acknowledge, let something unreasonable throw me off . Like you I found that talking about it, writing about it was the way of getting rid of the noxious words or action.

A dear friend from Alanon shared with me her secret. When someone starts down the crazy path she would keep repeating to her self that they might a s well be telling her that a dog has three legs. Other times she would recite Little Boy Blue.

We do need to protect ourselves from the hurt others throw at us. When I realize what is happening I always wonder what is behind it....their need.


Canada111
Posted: Sunday, April 7, 2019 5:42 PM
Joined: 8/22/2016
Posts: 263


Alz + 

Ridiculous that your cousin thinks that because you can type you don’t have this illness. 

You know very well that people who have Alzheimer’s can still type and can communicate for a long time. I am a fast progresser and now almost 3 years from the diagnosis. You know that I write a blog and talk about abilities changed and what I retain. We need to educate people about how brain degeneration affects people differently. I recommend if you do communicate with your cousin again that you email her my blog www.suddenlymad.com

It’s great that Keeper is helping and letting you vent and bringing food. You always prevail and I am so proud of you! 

 


Smilesyourway
Posted: Monday, April 8, 2019 12:21 AM
Joined: 1/11/2019
Posts: 70


Saddens my heart.   I just can't wrap my head around cruel and intentionally mean people.   If I know one thing about this disease it's that peace is essential....our brains just don't do stressful attacks and stupid drama .   WHO the heck does that?  

Good decision.....DELETE.....BLOCK.......GO AWAY......

Bravo for you to have the strength .    I wish my writing/communication skills were as good as yours.   My thinker it's getting worse all the time.   You made us proud.   

Smiles


alz+
Posted: Thursday, April 11, 2019 8:43 AM
Joined: 9/12/2013
Posts: 3608


 thank you for such thoughtful kind responses!

I am not responding to her and working to learn self protective behavior. The suggestions about inner response when hearing crazy stuff, detaching in the moment, going to ponder them a long time.

The physical mental nature of the shock I felt came out in nightmares that may have made me yell in my sleep as the dog woke me up looking concerned. I have not had nightmares (or any dreams) in ages. When I got up my body was trembling down to my feet. This went on for an hour and I could not think of how to stop it. Keeper was bringing groceries at noon. I felt like my immune system was collapsing.

I decided to "work it off" by cleaning the refrigerator. I took oil and a heart pill and started lifting 1 thing at a time out of it (it was really bad, had not been cleaned in a year ashamed to admit). 

4 hours later it was vinegar clean and I had all the shelving stacked on floor and food in boxes outside in snow. Exhausted but knowing Keeper was about to show up with my weekly food supply, I figured out how to put shelves back in. My patience astounded me. I was totally focused on each small task. this is my favorite part of Alzheimer's, the super focused lost in time thing.

I got rid of a lot of past date food and threw out damaged storage containers. It was a freaking miracle. It is beautiful. 

By the time food came (and foot rubs and his low voice etc etc etc) I was no longer affected by word fight.

Last 2 nights I have slept really well and had DREAMS just before waking. I can not remember them but they were colorful and nothing scary at all.

The support from all of you really kept me from getting shingles again. I understand I can't be around unsafe people anymore.

love and courage


Gig Harbor
Posted: Sunday, April 14, 2019 10:12 AM
Joined: 3/10/2016
Posts: 1022


Alz I am sorry your cousin said what she did. There is a blog at suddenlymad.com that is written by a lady with Alzheimer's. I think she has also been on this site. Her writing is so good as is her art but when she describes her physical limitations and her difficulties with activities of daily living it is hard to put the two together. She is the perfect example of people with Alzheimer's not following the same path. Good luck to you in your new location.