No sense of time.
 

I cannot keep up with dates nowadays. I can't remember how many years anything have been. If I misdate something here it goes with my brain not working right.

I became ill in 87 and went down hill from there. It will be 20 years in Nov. of this year.

What frustrates me I can't tell you when anything happened. I try to remember how long it's been since certain family members died and birthdates.

When my step daughter wrote to me today she said that Bill's Mom died 5 years ago. It honestly seemed like 3 to me. I have lost 2 brothers and a sister, a brother-in-law, a sister-in-law, 3 uncles and 2 aunts since 98 but can't tell you what years.

I can't remember appointments. I can't remember half of what Drs. tell me when I see them.

I think it's one of the most frustrating things. Drs. will ask me when something started and I can't tell them. I was thrown out of a Drs. office because he asked me to read a book on Fibro and I couldn't remember much of anything I read. I actually owned the book so I did read it. My caregiver was with me and she couldn't believe I was thrown out of his office because of that.

Everybody says write down appt. times. I do and forget to look at the calender. I forget to write in my journal all of the time.


Do any of you deal with this?

Ada

I have a little bit of it- I'm not very organized at all anyway.

So I have had to get myself a bit more organized just for these same reasons.
Do you have a dedicated space for all important notes and folders for medical, bills and things like that?

I keep a calendar program on my computer {Anytime - but theres' other ones out there} and it pops up every day when I start the computer up- so I am sure to remember appts and special days.
and every day I add anything that i need to remember.

I use sticky notes on computer screen and the refrigerator & I have a regular calendar on the refrigerator too - so the info is in 2 places.

I keep sticky notes at the phones to make any notes that i need and then stick them on fridge or computer- so i can add them if needed.

For the appts and such- ask drs for a copy of any notes and tell him you have trouble remembering the details of the appts.

they also have those mini recorders - ask if you can record/tape the appt so you can remember what they say.

Memory Problems
 

Hi Ada and jo55,

Last night I just read on Dr. Hooshmand's site that RSD affects nerves from the extremities into the brain, something like that, so thinking processes and emotions are affected.

Ada, Fibro is somehow the same...meaning I've always heard it affects "brains" in people.

I thought jo55's ideas were great! I'm going to do some of those things.

DeniseG

Hi Jo,
I have sticky notes. I have calenders. As I said, I try to do that but forget to look at them.

This morning I went looking for the garbage bill. I had put it where I would be sure to find it and I still couldn't find it. Bill took care of everything for me.

If Drs. offices didn't call to remind me of Drs. appts. I wouldn't get there.

I can't believe how bad my memory is. I never was this way until I developed RSD and Fibro in 98. The Drs. chalk it up to my depression. I'm always beating mys elf up for something I forgot to do.

I'm trying hard to stay as independent as possible, I don't want to put too much on my daughter so I'm doing all I can for myself but this memory thing worries me because if I don't keep my bills caught up I will be in a mess. I already forgot my cable bill in Dec. Of course it didn't help that I just got it in the mail Sat. with a whole stack of mail that I'm thinking must have been lost due to the storm.

I'm realizing now how much I depended on Bill. Actually he had me spoiled rotten. I don't want to stay that way though so I need to learn how to take care of everything myself.

Anyone that is married, I will say, if you have husband that spoils you rotten you need to think about what I'm saying. I just never thought of these issues until I lost him.

As far as the computer, I am also a computer idiot. I can turn it on, do some research and email and that's about it.

I am going to talk to Susan about setting up something like your talking about on here for me. She does all of my computer jobs such as sitting up my printer, camera and any other thing I need on here. It's not that I am stupid and can't learn it's just for some reason my brain won't keep it in.

I do think it goes with my depression also.

Thanks for the ideals.
Ada

yes..
 

Hi Ada and hi Jo..

I too forget everything, so much so that my family (santa) got me a hand held recorder..
I take it everywhere and it is great cause I do talk to myself, I just gotta remember to use it for what I need to remember.. lol

And to listen to it in the AM at the start of each day.. I miss days alot.. my mind is a colander.. :eek: er whatever you strain yr macaroni in.

take care,
sandra

ada,

a daytimer that has a journal, address book, pockets...they are the best.

you only have 1 thing to find. they are a little bigger than most, like a binder size. they have them set up to either see a day or a week at a glance. lots of room to jot down daily notes. i go back and look at ones from years past to help me remember stuff.

the pockets can hold the bills and reciepts. the day you get a bill, open it up, mark the date it is due on the right day and put the bill in the one pocket.

i started using one for business and personal years ago. mine is made by franklin covey. i get refils every year.

i do use my computer a lot. but having a home office...that i end up having to bring stuff to the actually business sometimes...this keeps it all in one place.

i totally understand about about you and bill. my folks have been married for 56 years. with dad not able to do the finances like he used to, mom had to learn it all.

(((((ada))))

ps...i'm writing down some of the hints and tricks you are getting. :)

Jo,
I should have learned from my Mom and Dad too. Dad died on their 56th wedding anniversary. He had took care of business all of their married life. Mom hadn't worked a day in her life. I will say though she did a really good job of raising 10 kids. We learned how to love and treat people as we want to be treated. So I honestly don't want to say she never worked a day in her life.

It's funny how back then they had a routine. Monday was laundry day, Tuesday was ironing, Wed was housecleaning and so on. I can't even keep a routine. Didn't learn that one either.

Mom had to learn how to keep a bank account and pay bills and do it all. By the time Dad died though I was so sick that I couldn't help her or realize what she was going through. Now I do. She only lived 5 years past Dad though. I honestly believe she was tired of trying to keep things going on her own.

Denise, I do believe that it is brought on by the Fibro as well as the RSD. As I said I read where depression affects it too. I'm just very tired of fighting it.

Another thing, phone calls, I have trouble with transposing nos. and I also have trouble with pushing the phone buttons on my phone. I can't believe how simple things become jobs for me. I sometimes try 3 and 4 times to call someone due to messing up phone nos.

You just start wondering if it's ever going to get better.

Ada

other tricks
 

I worry...
 

I worry all the time about my husband being alone and taking his meds while I'm gone. The other day he asked one of our children if he had taken his meds or not - as I was not up first that morning (usually I am) I had no idea if he had or not...Thank goodness our son was and remembered that he HAD taken them.

It's REALLY scary for me - I work generally from 6:15 in the morning and usually dont get back till the mid afternoon....He has meds he takes during that time. (Well on and off all day long...)

We thought of having him to write it down (the times he took the meds ) but were sure he'd forget to write it down - We thought of notes - But he might forget to look at them - So we're going with the pill box that has the times down on it.

This whole memory thing did not start until he began taking Lyrica - since shortly after staring them his memory is not always "on".

I worry so much about him - especially him being home alone while I'm gone - I do have a statement from the Dr saying I'm needed at home to care for him and could collect public assistance but first - How much would that really be - I'm sure it would be minimul - Second I like my job and do enjoy being there - it gives me a "break" from whats going on at home...

I guess we'll try the pill box and go from there - Hopefully it will work.

Hi Ada,
Please know I think of you often and wonder how you're doing. Well, I know how you're doing...it all just takes time...learning to live in a totally new and unfamiliar way; I know. xxxx

and Hi HwRSD! - Do you mean the large shallow pillboxes with little compartments for the particular pills for each dose? A friend with Parkinsons has those, he has to take scores of pills per day, different meds, different times...says he couldn't live without the boxes - he puts each dose in day order at the start of the month, each dose within a day in a separate compartment, all ordered for the coming month. Says it's simple - if the pills are missing when he thinks he forgot a dose, he knows he already took them and vice versa. Actually I can't think how else you'd manage so many without them...

No idea where he got them from, he's in the U.K.
all the best!

They have a new pillbox that has an alarm that goes off when it's time to take the meds. My best friend has it and it goes off everytime we are on the phone. She hates it and actually went back to the other type but it might be something you guys might want to get.

Hubby with RSD. I know what you mean about worrying about your husband. When Bill was living, our daughter would do his meds in one of those month boxes but he still would forget to take them. I would ask him if he took them but at times I couldn't even remember to ask him if he took them. At the end it was getting really hard because he was having more trouble remembering to take them. We were trying to figure out how to make sure he took them around the time he passed away. He was on so damn many that I couldn't even keep up with all he was on. I felt guilty because I couldn't help him more then I did. We were both trying to take care of each other and it was hard.

I would say maybe check in on getting one of those pill boxes that has an alarm. My friend got hers through her social worker.

I'm only on a couple of meds and I forget to take them until my stomach is messed up and I'm in a lot of pain at times.

I think the memory loss actually comes from the RSD but some of the meds do add on to the problem.

I have tried to get my memory better but for some reason I just can't get there. I do now put a paper on the phone at night to remind me of calls I have to make the next day. I am constantly looking for things though that I have missed placed and it drives me nuts. I usually find what I was looking for a week ago when I start looking for something I'm looking for at the present time.

When I was at my worst I actually journaled for about 3 years. I filled up a journal and a half and now I can't even remember where I put the journal.

Thanks Artist for your good thoughts. I am having a hard time. It seems to get worse instead of better. It's like starting all over again and not knowing how to start.

Ada

HwRSD...how about timers? I used to have to do that when I took care of my grandmother for a few days. I'd have to go to work, so I'd set the kitchen timer for one time, and a bedroom alarm clock for another, and a clock in the living room for another time. At each of the alarms, I'd have a bottle with the pills she was supposed to take, so when the alarm went off, she knew to take the pills in the bottle by that particular alarm.

I also used to take my meds 4 x's a day, but I would forget, too....so I adjusted them to 3 x's a day....when I wake up, after lunch, then before bed. Can't forget that too easily.

As for appointments, I set my cell phone to beep and I put it in TWICE. Once the day before, and once the day OF the appointment. That way I'm reminded the prior day, and the day I have to go as well.

Another thing that's huge...HABIT! If you have a habit NOW, incorporate memory tips into those habits. For example, if you put your keys in a certain place when you wak in the door, put your notes there. If you write a grocery list out consistently add to it, write your notes THERE, etc. So incorporate things into already established habits.

Look whose talking. me....the one who forgets something the minute you tell me! Now, if I could just take my own advice and apply it to myself, I may get somewhere!

What Memory?
 

Gee Ada how familiar all that sounds....I tried putting a list of "to do's" (to keep him busy, before he got this bad) and putting the list in front of the computer, then next to him and his recliner. He'd forget to read them! AARRGGHHH!!!

It's frustrating - For him as a sufferer and for me as a care-giver. I constantly worry too about the meds. I'm gone like I said for most of the day and I dont want to see him double dosing or missing a dose. Very scary.

I'm definately going to look into the alarm pillbox. Something has to work either that or I'm going to have to quit working just to make sure he gets the meds he needs.