I find that having a pattern helps for day to day things. 

It is really basic but I do my morning ritual in the same order every day.

That is the only way I can remember everything.

I do laundry on Sat. etc.

Things that are more irregular, I try to do as soon as the need becomes apparent.

If I put them off, they dont get done. I can remember and forget them again a dozen times. It works best for me to see the need and address it right away.

But it is a struggle. Struggling to stay on task was one of my real difficulties in my last year of work before I was medically retired.

It still is.

Staying focused and finishing something is very hard.  I really have to discipline myself to finish something.  But still it happens that I wander into something else and forget what I was doing.  Lists help, but I lose them or forget to take them along. The phone idea is a good one John.  I do set the calendar to remind me of things also but it does not always work.  I could be 10 miles in another direction and then hear it and realize that I was supposed to be somewhere else.

Hang in there!  Be patient with yourself.  Give yourself plenty of praise for all that you DO get done and be happy about that.  Focus on what works well and goes well.

i do experience problems performing tasks.  it seems to have gotten worse this past year.  i will be doing something and then my mind goes totally blank, i'll not recognize the item(s) i'm working with and, if i do, what i'm supposed to do with it/them.  or, the sequence to perform the task.  i even have a sequence posted in my bathroom on the steps to take a shower! and lists and post=its are everywhere!  i live by my daily/weekly planner; consult it several times a day.  even for t.v. programs to watch!

i live alone, no caregiver, so my neurologist has asked me for the past year to get in-home support.  first, i dug in my heels, i thought it would take away my independence.  but then i realized that it's necessary to help me keep my independence.  but, i had a problem finding an agency to help because of my age (57) and no health insurance.  but the alzheimer's foundation is paying for an aide to come once time per week for 3 hours for light housekeeping, med management, meal prep and laundry.  also to help with my cognitive therapy homework, if needed.

my diagnosis is frontotemporal dementia...another one of those insidious, terrible dementias.

i commiserate with you!

Sandy,  I have the worst time with tasks also, I find I have no ambition to do daily household chores, I see dishes in the sink and any number of things will happen, I may look at them and not even actually see them, or recognize they are dirty, or I'll look at them go..."ugh, not now"  and sometimes I get the water and soap in the sink and then not know why I've done that, drain the sink and walk away. 

I have a baby kitten (almost 7 weeks old now) and she has been on soft food for almost a week, I will prepare the food, pop it in the micro for a few seconds (she HATES it cold) and walk away before it beeps and completely forget I've done it.  She will get up on my lap and cry so I'll go fix her another plate and find the first one in the micro completely dumbfounded as to how it got in there.  

Laundry stacks up because I get it ready to take to the laundry mat but since I can't drive alone anymore, I usually forget or lose what little ambition I had before someone has time to go with me.

I will start making my grocery list and go look in the cupboards to see what needs to be put on the list and then go "what am I looking for? I'm not hungry!" and go watch tv or play on the computer, completely forgetting that I was making a list and usually end up making another or even 2 or 3 more before I actually get to the store, which of course, when I get there, have forgotten the list at home or if I brought the list, have forgotten that I brought it.

So basically, you are not alone.  And honestly, I have no tips to help, none of the things that I have tried to help with these issues has helped me, just wanted you to know that you are not alone.

I have a laptop rather than a desktop computer and I do have an alarm clock program that I can program for certain times and assign a note to that alarm to help me remember some things but since I'm not at the computer 24/7, it doesn't work for everything.

good luck and if you find a way to manage the tasks, please post it! haha

Iris and others --- lots of super input and suggestions. 

Iris, you are correct in saying that I can only do what I can do a particular time and if doesn't get done, it simply doesn't get done - terrific understanding and input. Also, although my wife can be and is of great help, it is a good idea that you suggested for me to have an additional trusted person help me out with some things to not burden my wife too much.

How are you managing?

I'll keep you up-to-date with things...

Best regards,

Sandy

This is a great topic that we all can relate to. When I was first diagnosed with Alz. I sat down and thought about how I was going to handle the challenges that I was facing.

Time...I have an alarm that goes off at 1:00 o.m. so I can take stock of my day and decide how I want to spend the afternoon and assess the morning.

Day... I live by my calendar so I know what day it is and I try to have something planned each day so I have something to look forward to. I try to do at least one thing each day.

Organization....What confuses me is what to do first. I list all the things I have to do. Seeing them on paper means I don't have to juggle them in my head. I then prioritize them and figure when these tasks have to be done. Then I start....the tough ones might take days because I have about two hours of thinking a day. I might choose any easy one to get me started and use what I have left to start another. It takes at least 5 times as long to get things done and I know this but it beats sitting around thinking about all the things I can't do. I also check off the tasks completed no matter how small so I can see progress. When my wife comes home and it looks that I've wasted the day I can refer to my list.

Focus...this is a biggie. I focus 100% on what I am doing at the time. Remember all those things floating in my head causing confusion are on paper. When I cook I am totally immersed in that effort. When my brain wears down I talk to myself continuously explaining what I am doing to continue focusing on the task. Self talk is important because you verbalize and strengthen your verbal communication and if your watching TV and go into another room for a pen if you saying pen, pen, pen I'll bet you won't forget what you are in need of. This takes practice, practice, practice.

I can't do as much as I used to but I hold dearly what I can.

Oh Sylie,

We should not have to fight this battle with our own family. We need them to support us.

 

Please call your local chapter of the Aliz. Assoc. if you don't know, call the help line 1-800-272-3900. Then call your chapter and ask them to help you. We should not have to fight this

Some chapters can have a meeting with the family to help clue them in.

Also ask if they have an Early Stage Coordinator. If so, have her contact you. Do they have an Early Stage support group. Tell them you don't drive.

Tell your family that you no longer feel safe driving and for the safety of all you will no longer drive. Is there any place you are comfortable driving to? 

This is a booklet: Order Your Free Copy: To order a free copy of What Happens Next? and other NIA publications online, visit www.alzheimers.nia.nih.gov or call 1-800-438-4380.

Give me a good time for you to chat in the chat room and I'll try to meet you there, hopefully with at least one other early onset person.  let me kow the time.

Thank you Pasnurse,  I was diagnosed with atypical EOAD,  unofficially diagnosed in June, began testing and just completed teh tests and got the results a few weeks ago.  I have no denial or anything goign on so it has been acceptance since the word go for me,  not so much for my husband and daughter, my son was a different matter, he is so much like me lol.  He accepted it right away.

.

The choice to drive or not to drive is, unfortunately, not mine to make, I am the only person in the house with a driver's license and my husband will not allow me to not drive, he can be a bit...testy when he wants something.  He will rationalize, try to make excuses, try to find a way around something and finally will become angry and say "just do it!"  If that still doesn't work, he will play mind games and lay guilt trips until I just give in.  I can only take so much.  Same goes with anything that I don't feel comfortable with anymore that is "my job" as the family has deemed.  Such as cooking.  I do have a microwave and a crockpot and try to do as much as I can in those.

Mimi,

Thank you for the recommendation to call the helpline, I have no access to a phone right now but the phone number you listed is a skype number right?  I might be able to use skype when my husband isn't around,  He would lose it completely if he knew I was trying to get around him for outside help.  He feels our problems are ours alone and we will deal with them.  He doesn't even know that I am on this website or he would have a fit.

I would love to chat with you in the chat room but I have never been able to get the chat room to work from my laptop, I did once get it to work on my husbands desktop but he locks that up now,   I emailed admins and they gave me some suggestions for making it work but none of the suggestions worked and when I told them that they didn't work, I never heard from them again.  I just figure that it's not meant for me to chat in there  

I am still looking for tips on how to make things work (tasks etc) as a solitary if anyone has any other ideas 

Hi Syle,

Sylie, 

My heart goes out to you!  We need the support of our families to help us battle this disease the best we can.  It doesn't sound like you have what you need from your husband.  Unfortunately, it sounds like he is not accepting of your views or challenges.  I don't know how you can live that way.  That certainly must add considerable stress on you.  

If he only knew there is a big liability your driving causes in case in the event of an accident; then he wouldn't push you to drive when you aren't comfortable.  You need someone to help you and I wish there was a way we could help.  

If you can communicate any need or way we can assist or guide you, please let us know.  We hope you understand that you aren't alone as long as we are here!  We understand the challenges and trouble you face every day!  Hang in there, kiddo!  

Sylee,

Relax. There is no way we can contact your husband, nor will anything be done that you don't want done. I am speaking as someone who has worked with Domestic Violence victims for over twenty years. Between us we want to help you. I will not to tell you what to do. You are the one to make the decision and I can tell you are capable of making the decision. 

Right now you are living with a lot of fear and that is not good for someone with your diagnosis. Perhaps we can come up with some options to help that you hadn't thought of. Since you can't make a phone call, I would like to figure out a way so we can talk in private in a chat room. This space is not exactly private.

Your safety is our concern and I would never do anything to put your safety in danger.

Sylie, I'm dealing with this alone.  My family is across the country and my former close friends have abandoned me.  I called the Helpline and spoke with a Care Coordinator at National who referred me to a local chapter. 

The local Early Stage Consultant got me connected with an organization, Independence at Home, that helps disabled seniors remain independent in their homes. The social worker makes home visits two to three times a month and has been of enormous help to me.

You need a person you can TRUST to help you.  Your son sounds like he might be of help.  How old is he?  A mature teen can be of immense help and support.

The caregivers use therapeutic fibs to move things along with their ADLOs.  I propose that it is also permissible for us patients to use therapeutic fibs.  I know many would not agree but you are in a difficult position and this is an option.  Tell your family that your eyes are bad and you can't see to drive.  You don't want to drive with your kids in the car.  Seek out transportation for the disabled in your community.  DON'T DRIVE IF YOU DON'T FEEL SAFE DRIVING!

You need to begin making plans for your future.  When will your kids become adults?  They can help you.  You do have some time to make plans but you must not delay.

In the meantime, plan plenty of stews and crockpot and microwave meals, as you are already doing.  Get the kids to do the housework.  When I was a kid, my brother and I spent Saturday mornings cleaning the home.  We grew up all right!

When you can get to a pay phone, make contact with your local Care Consultant on the Helpline.  You won't even have to give your real name if you are hesitant.  Tell her your story.  They will only do as much as you want.

You can also contact a local Women's Shelter, also anonymously, to discuss putting a plan in place for yourself and your children.  Who will take care of you when you can't?  There are places and programs for women with limited resources--you just have to find them.  Don't be afraid and don't be ashamed.  It happens.  I have also been a domestic violence counselor.  I know the type of help that is available to you.

You have support here, Sylie--never forget that!  You have options.  You don't have to sit home and be neglected.  You are a person and you deserve to live in dignity and to get your needs met!

Iris L.

Another brief comment:

As I have been thinking and/or observed my physical and/or emotional behavior, I have noticed that it is clear that I cannot take on too much during any one time, or during any one day or week. The more tasks or appointments that I have, the more difficult it appears for me to deal with it all. So, as I carry my appointment book with me at all times, I am becoming most careful to NOT over book myself with things to do... 

At the same time, I have told family members that it is extraordinarily difficult for me to get "assignments" to do this or that task, particularly if it is to do them immediately or asap.

Any others having the same experiences?

Thanks,

Sandy

Hi Sylie,

I too have dementia, so please forgive me if I said something the wrong way.

First: my remark about Admin. I have been very active in the Alz. Assoc. for over five years and have made friends locally, state wide and at the National offices. One of these good friends happens to be associated with alzconnected. She has access to your e-mail. Why? 

Usually people think if the are contacted by the Administration they have done something wrong. Usually this is posting an ad or saying something that they feel is helpful but has hurt someone else. These are sent an e-mail. There are other times, that someone appears to need help above and beyond what this board can provide. This is the reason in your case. 

The person who will contact you, my friend, is a wonderful kind  and sympathetic person who is much more knowledgeable about available services than I am. Since you say you are not free to make a phone call, I hope she can help you just using your computer.

The reason I seem to be pushing the chat room is there will be no paper trail. Even if hubby happens across your e-mail or this site, he cannot find out what's said in the chat room.

I'm also sorry if you think I'm saying your husband is beating you. You have said he is not. However, there are other kinds of abuse. Forcing you to drive when you don't feel safe is abuse. And I understand, from his viewpoint, he needs you to drive. Our goal is to figure out a way that accomplishes this without endangering yourself or others.

Please stay with us, even if for now you only read.

I am so glad you found this website and told your story. I am tremendously sorry that I frightened and upset you.

Dear Forum Friend Sylie: 

We here on this Forum want to be your friends and we will NEVER do anything that will be harmful to you in any way.

Please do not go away or stop writing and talking to us.  We understand.

No one will EVER contact your husband or do anything that will be able to be found by your husband - not one little bit, not ever. 

We now know more about you and your wishes and we will  follow your wishes which you have shared very nicely.

We will be here for you when things are going well and we will be here when you are having difficult times.  We will honor your feelings and will listen and send you our caring.  That is what friends do and you are our new friend.

So, we can set aside all the communications that have troubled you and start anew just being here as friends and sharing ideas between each other for how we manage things that challenge us in our day to day living.

With a soft hug and hopes that you will continue to come and share with all of us,

Johanna C.

Hi Sylie,

I just noticed your pumpkins. Fun. Any trick or treaters expected?

Our town has postposed celebration until Monday. Some still don't have power back. So I'll probably have visitors both night.

Sylie, I'm glad you're still lurking. And do feel free to say whatever you wish.

Sometimes just venting makes one feel better.

This site is like a big community: the care and love we send through the waves can be felt!! And we dare care about you!!

what i am in the process of doing is labeling what is in my kitchen cabinets and drawers as well as my dresser and linen chest.  i'm also "de-cluttering" my utensil drawer in the kitchen and getting rid of all of those small "gadgets" that i never use.  now that i'll have in-home support starting on Tuesday, i'll have her help me.  i feel these aids will help me find an item more readily rather than searching and wondering what cabinet/drawer it might be in. 

will the aids look obvious to other people?  yes, but i don't care.  anything that will help me.  besides, those who know me won't mind.

i LIVE by my daily planner that i keep on the end table next to where i normally sit.  i consult it constantly. i even write down what t.v. shows i may want to watch on any particular evening, time it is on and what channel.  i have all of my remotes marked on the back so that i'm not wondering what they go to: air conditioner, dvr, and t.v.  i also have a smaller planner that i keep in my purse, keep updated and consult it when i go out of the house.  and, i wish i owned stock in post-its!  not to mention my small spiral notebook and a small yellow lined pad and pen that i keep upstairs on my bedside table.  also a pen, calendar and post its in the bathroom!

i know it sounds like a lot, but it works for me.

Sandy,  we are sorry about changing you original post and didn't mean to desert you.  Sylie, is just  having trouble managing everything right now in her life.

Sandy, I also have AD and you are experiencing what we all go through.  It's hard to manage...especially if we are rushed or pressured.  It's good you are making efforts to plan out to relieve as much pressure and overload as you can.

Sylie, we only have YOUR best interest in consideration.  I want to echo that we will not do anything you don't want.

Just keep in mind that you deserve the right to be happy and to feel protected.  Think of ways that will help you the most in the future when you cAnt defend yourself or cope.

I also have Alz. like Mimi.  We can understand how hard changes are for you.  Post when you want to.  We will still be here waiting to hear from you.  

SYLIE, 

Did you check your email for any correspondence from the Alz Assoc.?  This is what Mimi wrote and it makes me think that you may have been contacted by email.  

Mimi wrote:

"The person who will contact you, my friend, is a wonderful kind  and sympathetic person who is much more knowledgeable about available services than I am. Since you say you are not free to make a phone call, I hope she can help you just using your computer."

If you have not already done so, check your email for anything you may have received to help you.  Then reply to the email if you want or reply here and admin can read it here.

If you got an email, erase it.  Then look in your email TRASH and erase it from the TRASH if your hubby knows how to look there.  Then there won't be any record he can trace.

I'm sorry for the concern this has caused you.  Mimi has AD like me and you.  She would never mean to upset you or cause problems.  Her actions are always out of a caring and giving spirit.

Just in case you may have gotten an email meant to check on you to see if you need anything, you can erase it.

let us know. please

I htink I will take Nomemo's plan of action to heart and start labeling cupboards and shelves.  I don't know how many times I have found the hot chocolate canister in the refrigerator or the cooking spray in the fridge or silverware in the freezer. Maybe if they are labeled I can get things put in the right places. Maybe I won't spend 10 minutes looking for something that by the end of the 10 minutes I don't remember what I was looking for in the first place...