I use to do many things.  I have a BS degree.  I was a social worker and a registered polysomnographer.  I use to be on gymnastic team in college.  I was always in wonderful shape and took pride in my body and looks.  I was a person who liked to always be doing and going.  Now I am so limited, it makes me want to cry.  I can't drive!  I can't cook!  I have trouble seeing!  I have trouble talking!  I have trouble walking sometimes!  There is not much I can do anymore, but type.  I type to stay alive.  To feel like I still exist.  My world is my home and my pc.  It's sad, so sad.  It hurts when others say you just have to push yourself.  I have!  I am!  I get out of bed!  That's an accomplishment for me.  I get on my PC and type!  That's an accomplishment for me.  But apparently that is not enough!   Even here I feel like I am no good.  Like I am not trying hard enough.  I am so hurt.  So hurt.  Today is bad and I know it.  I should not be on here ranting.  I will probably regret this later.  But for now, I don't care.  Sorry, so sorry for what I have become. 

We all have our days.  This is mine...

Dear BlueSkies.  I am so sorry you are having a rough day.  I know the road you are traveling gets wearisome.  Hope today will pass and tomorrow you will have a little more peace.  

Take care.   Sara

Thank you guys. You are my friends. 

Oh Bill, we are comrades in a difficult world now, aren't we.  So hoping you took your pill too.  I do know how that feels. It really is scary. I know you didn't have to share all you did. I appreciate it.  I don't feel so alone in this now. Thanks my friend for sharing.

Bill is right.  I am just having an off day.  I will be better.

Thanks again.

Blue Skies, I have learned that it is So Important do develop a philosophy of living with dementia.  We are not the same as before, but we are not worthless!  Whenever I fall into a rut, and that does happen, I go back to basics, which is my basic philosophy.  My main philosophy is being a follower of Jesus Christ.  

After that, my philosophy is to be what I call a Super Senior--a senior who lives independently with a major disability.  My independence is my priority.  I don't want to become a burden.  I also want to have a fulfilling life.  This means interacting with people in whichever ways I can that are uplifting and useful.  I want to be a Dementia Pioneer so that I can be of help and uplift to those who come after me.

As for doing things, I have learned that I can still do a lot, but I have to make accommodations.  I can do things if I take my time, and break things down into steps, and avoid and eliminate distractions.  Yes, my life is markedly different.  Right now, I am in a rut.  A deep rut.  I have been thinking about posting about being in a rut, but I just didn't know what to post.  But I know that I will get out of this rut.  In fact, I am already beginning to get out of the rut.  I know this because I journal every day.  I go over my philosophy and affirmations, and make plans, and put my philosophy into action.  

A great deal of my philosophy of living with dementia came from reading posts from members on these boards.  I learned what worked for other PWDs when they were in their ruts and having their bad days.  It really makes a difference.  What is available in the outside world doesn't work for us.  At least, that is my experience.  If we're looking for help in the outside world, we're not going to find it.  All the outside world has for us is victimhood.  I decided, if I have dementia, I am not going out like a victim!  I decided this in 2010.  This decision has brought a lot of peace to me, ever since that time when I was in a deep depression.  This doesn't mean that I don't have depressions.  I have figured out that depressions are now going to be in my life.   But I have learned how to recognize them and what to do about them.

Blue Skies, you will figure out what is meaningful to you, and hang on to it.  Keep bringing positivity back into your life.  Cling to what is good in your life.  It will help you deal with what you are dealing with right now.

Iris L.

Bill, I still have times when I don't remember if I have taken my pill.  What I do to avoid this is to put the dosage for that time into a little pill cup, and set it next to my plate, because I take my meds with meals.  I take the pills directly from the cup while eating my first few bites.  I usually have four pills to take.  When the cup is empty, I know that I have taken my four pills.  I don't set the pills down on the table.  If they are set down on the table, they are likely to become overlooked and lost.  I don't take pills standing by the sink anymore--it's too easy for me to forget that I have taken them.  

Iris L.

Rainbows, sunshine and ice cream (of course!), coming your way!

(((BlueSkies)))

--Lynda

I lost my medical career, my marriage, my mother to an undiagnosed cancer, and have had many other losses.  I post what has helped myself.  I said, everyone will have to develop his or her own philosophy of how to deal with living with dementia.  I post what I think will help.  If it doesn't help, I am sorry.  

Iris L.

I pretty much follow your plan for taking pills. The thyroid since I take it during the night I take out of the drawer when I go to bed. It goes back in the drawer as soon as I put the cap back on.

Blue Skies, Sorry it's a bad day.

I think what Iris is trying to say and what is my philosophy.

Yes, there is no question we have all lost something.  Early Onset folks had wonderful careers which you had to give up.

But what I believe is that if I concentrate on what I lost I will be stuck in depression and unable to do anything.  

I prefer to concentrate on what I can do. The first book I read after diagnosis was I'm Losing My Mind by Tom DeBasio.  I thought wow, he wrote two books after diagnosis.

As the result of the neuro-psych were being explained, one part of the discussion hit home. I kept being asked to hear and then repeat a list of words. I remember thinking: stop I can't remember that list. Don't you get it.  In actuality, the test revealed that the more times the list was repeated, the more I could remember.  I blurted out: You mean I can still learn!!!

I have published five books about the Rural Schools in my area since being diagnosed.  Yes, it's becoming harder and I make more mistakes. But I figure it's good for my cognition.

Julie,

Do tell us more about your books!!!

Lynda, thanks, ice cream is my favorite treat

Iris, thanks for caring and taking the time to write out such a well thought out response.  I am clinging to what is good in my life.  That is so important as you said.

I cried on my DH's shoulder when he got home.  He took me for take out and a nice long drive.  It helped clear my head and relaxed me.  He is so good to me.  I am so thankful for him, my good friends on here and my God who stays with me always even when I rant and rave.

I know I am having a lot of trouble with my moods lately and am trying to get a grip.  I am working on it.  Thanks all for putting up with me.  

Julie, you have books published, really?!  You never told me about that.  Did you?  Yes, please tell us about them.  How cool is that.

I won't be around for a few days because I'm going to Disneyland!  My cousin from NJ is visiting Disneyland with her family and invited me to come along.  In the meantime, Blue Skies, I think it is important for people like us to work on stress relief techniques, whatever works for you.  Being overloaded with stress = depression and bad days.   As much as little negativities eat away at us, little positivities can build us up.  

This is my belief.  That's why I'm going to Disneyland, the Happiest Place on Earth!  It's a positive to balance negatives in my life.

Iris L.

I do not mention I am an author very much because of the kind of books I published. I wrote some adults only books.. There are three of them. I deeply enjoyed writing them.. I have been told to write another one by my therapist but I just am not in that headspace to write  at this time.

Lucky you Iris!  What a fabulous getaway.  Can't think of a better place to refuel and be in the best frame of mind to forge ahead with whatever comes next. Enjoy!!!  Looking forward to hearing about your adventures.

--Lynda

(((((((((Blue)))))))))),

A social worker. I can see that! Please never think you are worthless again...all you did with your life before and now still counts. Correct me if I'm wrong but I'm sensing in some way you were comparing your self to others? 

Whenever I compare myself to others I always come up short somehow and feel less than. It is not a good space to be in. Especially, when others have not walked in your shoes and had the life experiences that you have had. 

Please be fair to yourself  and only compare yourself to yourself. Not unlike you, I've had some traumatic exp's in my life. Given where we came from and all that we exp we have done exceptionally well. 

I forgot to take my pills yesterday. I think I take them twice sometimes because I can't remember if I've taken them. I have a pill organizer that's still in the wrapper. 

On my way to work I pay for my coffee and lunch with a $20 bill all the time because I've lost the ability to make change. 

Julie,

That's neat that you have written some books and had them published. I always wanted to do that, but found it overwhelming just to organize all my thoughts into a book, much less be able to get one published.  I agree with your therapist.  Keep writing.  I still write, not as much, but I still do.

Iris,

You lucky!!  Disneyland!  I use to love going there.  So much fun.  The crowds are too much for me now, but I think it's an awesome place.  Have been there in the past as a kid and then with my kids.  Hoping you have a wonderful time.  Make sure you share all your fun with us when you get back.

Yes llee, that's exactly what I was doing.  Silly me, I should have known better.  I usually do, but I find that when I am having a bad day that all my sense seems to go out the window.  I woke up with a horrible headache and hives again.  My immune system appears to be shot.  It doesn't seem to take much for me to get sick or break out in something, who knows what.  But I think that contributed to my sensitivity or I should say tender side   Anyway, you are so correct.  We should never try to compare.  Oh yeah, I took some antihistamines and the hives eventually went away, thank goodness.   I forget if I take my pills sometimes too.  I have a pill box and keep saying I am going to get it out and put them in it, but I keep forgetting to.  I am going to do that right now!  I don't pay for things anymore, my DH does all that.   But I use to do as you do.  It was easier and kept me from being embarrassed trying to figure out amount, change, etc..  The other day my DH asked me to pay with the credit card as his hands were full.  I took the card and could not figure out where to put it.  The lady had to show me.  I then couldn't see what button to push to continue.  She had to push it for me.  I then had trouble signing my name, but eventually got it, but then couldn't again find the right button to hit to continue so the cashier again had to help me.  People in line were snickering and I was almost in tears.  I just wanted to get out of there.  As I left she hollered, "Miss, you forgot your receipt!".  By then people were laughing.  I was so upset I told my DH please don't ever ask me to do that again.  So pitiful, but it is what it is.

Thanks for sharing llee.  It always helps to see that others are struggling with the same things that I am and are still surviving just fine.

Lots of love, BlueSkies

Thanks Canada,  An assistant, what a cool idea.  Hope it helps.  You will have to let us know how it works out.  Good luck!

Zoom chat.  Hopes it's not too complicated.  Was going to do that or something like that on the FTD forum, but couldn't figure it out so ended up just giving up. 

Maybe doing it again, practicing this processing skill, rather than thinking you can't do it, would enable you to be more confident in paying for things. Just a thought.

For me there is a lot (a tremendous amount) of social anxiety too. Just going to a store is a big deal now.

Paying for things with a credit card is something I can still do.

Being with people who I can't tell that I have MCI and early Alzheimer's pathology is the roughest for me. I've lost many friends and people I was happily close to over the past few years since this disease changed me so radically. 

Now making small talk with the hairdresser who does not know I have this weird and horrible disease, or colleagues at school, who I avoid interacting with and simply having a conversation with, is anxiety promoting. I bumped into an old acquaintance, and potentially have the opportunity to turn an acquaintance into a friend because of our good repore, but I am completely reluctant to make further contact, because of fear of rejection, if I did her about my dx, and she knew how messed up I am now. Stuff like that has me feeling very down. I know that Iris chooses not to disclose. How do you deal with that?

Blue skies, I really hope we get to Zoom chat with each other. Here is the link for how to sign up.

https://support.zoom.us/hc/en-us/articles/201362033-Getting-Started-on-PC-and-Mac

We can figure this out, and if not we can ask for help. I know that Michael E. uses Zoom chat, and many people with FTD and Alz do. It's a good goal, I think to try and make this work for some of us who want to meet each other, and help each other through our struggles. Dementia mentors works on that philosophy, and I think it raises the bar for the dementia community, maybe even keeping us in the early stages longer.

 To my mind, we're here to help each other not give up. We're so vulnerable now.

Canada,  Yes it was anxiety provoking to have to pay when I wasn't expecting to.  It did make it so much worse.  Normally I could pay when I know I have to ahead of time, but even then it is difficult.  But I usually don't have that much trouble.

As far as telling people or not about my problem, I really don't have the luxury of being able to hide it.  My aphasia is bad enough that most people who have a conversation with me know something is wrong.  That's why I don't like to go out much where I would have to talk with people.  Also I have a problem with myoclonic jerks and that is a bit embarrassing too.  All my family and all my friends know I have dementia.  I was diagnosed with moderate to severe dementia last year.  I think it is more moderate than severe though because I am still pretty aware and can still write well.

As far as zoom chat, I will give it a try, but will have to see how I do.  The aphasia could be a problem.  My speech is very hard to get out and then when it does come out, I can't always get the word I need or I use the wrong word.  Some days are better than others.  Hopefully it would be on a good day. 

Iris,

I think visiting Disneyland with your relatives is a very brave move on your part. I hope you enjoy! You will need a big rest afterwards.

Julie,

For 10 years I worked at Waldenbooks. There is a gift to the written word, I don't care if it is sci-fi, mystery, romance, or erotic fiction. It your words allowed someone to put aside life's issues for a few minutes you gave them a tremendous gift. 

Hold your head high, many people had a mini vacation in your words. As for the nature....   you wrote romance. Romance has many many varieties from regency to sintilating...

I understand about not feeling you are in the correct state of mind to write, so for today don't worry about your next novel....  I would respectfully suggest trying to rekindle the art....   maybe just an amusing meeting between 2 people, or a verbal illustration of a person. 

I love music and have a huge collection of bootleg concerts. I found myself playing around with art....   I have now made album art for over 400 cds....   and I put a bunch on Pinterest...  if I get a like or share SWEET, if not.....   no big deal.

Just my 2 pennies, no charge

Brother J

Years ago, we had a music thread.  Someone might want to start one again.

Iris L.