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I guess I am just worthless now!!!!
BlueSkies
Posted: Monday, June 5, 2017 11:01 AM
Joined: 2/24/2016
Posts: 1096


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...


julielarson
Posted: Monday, June 5, 2017 11:19 AM
Joined: 9/30/2015
Posts: 1155


Honey you are worth so much to us all and I am so sorry you felt bad about what we were sharing.. I did not hear you when you first were upset.. I am sorry for that.. The thing is with me is I am compulsive doing the things I do, it is part of what I go through.. I have to get up very early, I have to get dressed by such and such a time because if I do not I am depressed but  That is not where you are in your life and there is nothing wrong with that.. Nothing.. What I go through is not pretty either. I have to do all the things I do and I get looks when I say The time I go to bed at night and the time I get up in the morning... It is not normal.. but it is what I do.. Big hugs honey...
Sayra
Posted: Monday, June 5, 2017 12:41 PM
Joined: 8/10/2016
Posts: 4056


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


BlueSkies
Posted: Monday, June 5, 2017 12:58 PM
Joined: 2/24/2016
Posts: 1096


I'm so sorry.  I am not well.  It's me.  Just me.
julielarson
Posted: Monday, June 5, 2017 1:01 PM
Joined: 9/30/2015
Posts: 1155


Honey we all have bad days.. Take care of yourself.. Love yourself.. There is much to love.. Believe me I know... I would not be your friend if you were not special...
BillBRNC
Posted: Monday, June 5, 2017 1:03 PM
Joined: 12/2/2015
Posts: 1018


BlueSkies, I really sorry you are having a bad day. I call them my "off" days. I sometimes have off hours and even minutes. My "on" times are a much to write home about either, but they are better than my off days. This morning was an on day for me. I took Doc out to do his business, fed him, took him for a walk, went to drug store, and went to store and bought a hair cutting thing with attachments to make sure you cut the hair to the right length. I have gone to a barber since I was 16 years old. I've cut my own hair ever since, but then I have always had somewhat long hair. But lately my hair has been thinning out. Add to that I hate taking a shower, and I haven't had a bath since the 8th grade. I don't like showers because I get lost and forget what I've done and what I need to do, so I just don't take them until my wife pushes me in for a shower. I sometimes go several days without a shower. I might even wear the same clothes for several days because I hate picking out what I'm going to wear. Anyway, back to the hair cutting stuff. I came home and used the shaver thing and wacked a whole lot off. I think I did a good job too, but it is much much shorter now, and I think I like it. Well, my wife went out of town with the grandkid for a week, not back until this Friday, so I'm all alone except for Doc. I hate being alone, but I hate it more if I ask my wife not to do something that she really enjoys doing, at least for now. Well, what is the purpose of all this rambling, well I had to take my Parkinson medication at Noon today. The only pill at mid-day for me. I have many pills in the morning and evening, and few at bedtime. Well, I got two Saltines so I wouldn't get an upset stomach when I took the Sinemet pill, and I got the pill out of my pill box and went and sat down at the table. I have to sit to swallow these days, as I tend to aspirate if I drink fluids standing up. I ate two crackers, then reached for the pill on my dish, and it wasn't there. I know I put it there, but I have no memory of taking it. So I looked all over the floor, the table top, my chair, my clothes and under everything. I didn't find it, so I guess or at least hope I took it, but I don't recall at all. The problem is if Doc were to find it and eat it, he would be dead in about an hour, so I really looked and looked. I hope I took the pill. I guess I went from on to off. I must be back on because I'm typing now. This whole deal absolutely stinks. But it is my life now. Worthless? I don't think so, not you, not me. Most people couldn't handle things as well as you do, or me for that matter. No, we are not worthless. I just hope my Doc doesn't die. I hope my wife doesn't kill me when she gets home and sees my hair. I think I'm going to go outside and eat some worms.
BlueSkies
Posted: Monday, June 5, 2017 1:24 PM
Joined: 2/24/2016
Posts: 1096


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.


Iris L.
Posted: Monday, June 5, 2017 4:29 PM
Joined: 12/15/2011
Posts: 18514


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.


Iris L.
Posted: Monday, June 5, 2017 4:34 PM
Joined: 12/15/2011
Posts: 18514


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.


julielarson
Posted: Monday, June 5, 2017 4:46 PM
Joined: 9/30/2015
Posts: 1155


Iris can you for once admit that sometimes the things we lose are gone? I mean gone and not going to come back.. I know because cleaning is out of my wheelhouse now. I washed the Jeep a week ago and I am finding that even though I paid close attention to what I was doing .. As close attention that I have in me right now and it still is dirty in places.. This has taught me that I am no longer able to do it to my old standard and I give up.. I will clean as good as I can but it will not be the same as it used to be.. I have decided to give myself a break on this because it was making me upset at this limitation that I have now..
grandmalynda
Posted: Monday, June 5, 2017 5:05 PM
Joined: 12/3/2016
Posts: 374


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

(((BlueSkies)))

--Lynda


Iris L.
Posted: Monday, June 5, 2017 5:38 PM
Joined: 12/15/2011
Posts: 18514


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.


julielarson
Posted: Monday, June 5, 2017 6:00 PM
Joined: 9/30/2015
Posts: 1155


Iris, I am talking about skills we used to have and do not have any longer. Humans have losses in life that is the way it is but when you lose skills that you possessed no amount of doing it differently can bring them back sometimes.. Some times they are gone and we lose a piece of ourselves that was a part of us for a long time. At least that is my experience over cleaning.. I used to be a professional cleaner.. I took great pride in my abilities to clean anything and got many compliments on my abilities and now that is gone.. Nothing is going to bring that back to me.
Mimi S.
Posted: Monday, June 5, 2017 6:00 PM
Joined: 11/29/2011
Posts: 7027


Iris,

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.


julielarson
Posted: Monday, June 5, 2017 6:54 PM
Joined: 9/30/2015
Posts: 1155


Mimi, that is wonderful you published those books.. I have done some writing in the past and had some of my books published before all of this started with my memory. I find writing to be all consuming and I would never get done anything else around here.. Probably why I do not sit  down to write anymore..
Mimi S.
Posted: Monday, June 5, 2017 8:21 PM
Joined: 11/29/2011
Posts: 7027


Julie,

Do tell us more about your books!!!


BlueSkies
Posted: Monday, June 5, 2017 11:18 PM
Joined: 2/24/2016
Posts: 1096


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.


Iris L.
Posted: Tuesday, June 6, 2017 2:07 AM
Joined: 12/15/2011
Posts: 18514


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.


julielarson
Posted: Tuesday, June 6, 2017 4:33 AM
Joined: 9/30/2015
Posts: 1155


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.


grandmalynda
Posted: Tuesday, June 6, 2017 7:11 AM
Joined: 12/3/2016
Posts: 374


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

 


llee08032
Posted: Tuesday, June 6, 2017 7:33 AM
Joined: 5/20/2014
Posts: 4408


(((((((((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. 


Canada111
Posted: Tuesday, June 6, 2017 11:03 AM
Joined: 8/22/2016
Posts: 263


We are all in different places and different people. Today I am having a very hard getting dressed and functioning. I need a lot of support and have hired an assistant to come here to keep me motivated. She will be here in 45 minutes which is why I have to get up now, so I am dressed when she comes. Every day is different, and Blue Skies I know how you feel. The path is mired with obstacles, but we are here with each other, and it is a spiritual community because of that. I am with you today, Blue Skies. I now have to get up and get moving. Consider my proposal for us to form Zoom chats. I would love to be able to see you and perhaps we can support each other, when one of us needs help.

BlueSkies
Posted: Tuesday, June 6, 2017 11:12 AM
Joined: 2/24/2016
Posts: 1096


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.

llee,

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

 


BlueSkies
Posted: Tuesday, June 6, 2017 11:18 AM
Joined: 2/24/2016
Posts: 1096


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. 


Canada111
Posted: Tuesday, June 6, 2017 11:24 PM
Joined: 8/22/2016
Posts: 263


I really feel for you regarding what happened in the store when you became embarrassed about paying with the credit card. It sounds like you were experiencing so much anxiety about suddenly doing this, that your processing and concentration was obliterated.

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.

 


BlueSkies
Posted: Wednesday, June 7, 2017 1:39 AM
Joined: 2/24/2016
Posts: 1096


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. 


llee08032
Posted: Wednesday, June 7, 2017 6:35 AM
Joined: 5/20/2014
Posts: 4408


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.


Brother J
Posted: Monday, June 19, 2017 11:44 PM
Joined: 6/18/2017
Posts: 9


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


Iris L.
Posted: Monday, June 19, 2017 11:49 PM
Joined: 12/15/2011
Posts: 18514


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


Iris L.


julielarson
Posted: Tuesday, June 20, 2017 2:08 AM
Joined: 9/30/2015
Posts: 1155


Brother, Thank you. They were such a pleasure to write and I deeply enjoyed the process.. I think I finally got what my professor was talking about when he said it is all process.. I think my next book is a collection of thoughts on the page I seem to really enjoy writing like that..