Dementia Support Group

I help my Father as he travel this journey through Dementia and other diseases. I have only been a member here for a few months, but have not seen too many others post that have the disease, but I have seen a couple. I hope they will join in for you to discuss topics with.

I do want to say welcome, welcome, welcome! While there are many of us out here trying to do the best to care for our loved ones, one common concern is that we wish we new more about how they felt and how we can help them more. There are so many limitations to communication with certain types of dementia that you could certainly shed some valuable light for us if you're willing to hang in there with us! :)

Anything you can share or want to talk about we're here! Thank you for joining in. Cathy

Hi Cathy -

Thank you so very much for your warm welcome. I would be happy to share info about this unusual road I have found myself traveling.

Often, that may not be much more than relaying "feelings" since I forget what I did 3 minutes ago. Funny though, I can tell you what I did in 1974.

I will try not to get too wordy with each post, which has always been difficult for me when I compose (smile).

I'll jump around rather than starting at the beginning since the total would equal a novel.

I began to have symptoms of confusion and "inability to execute" problems sometime between 2004 and 2005. This, for someone who has done everything from executive government work to legal secretarial to later successfully running regional divisions of a large corporation, then falling back to legal, and now, unable to consistently operate well enough to even fulfill the responsibility of taking my medicine.

Previously, I was organized to a fault - a place for everything and everything in its place - had been since entering adulthood - and now I often can not organize a small stack of papers. That stack of papers is overwhelming and often it is too much input for my mind to deal with. I can do it if someone will JUST SIT WITH ME.

It seems I can do better when someone (usually hubby) is sitting with me because I don't want to make them sit there too long - I feel it is an inconvenience - so I do what I can and he is RIGHT THERE to help me when I need it. If he is not RIGHT THERE, I may not get back to it for weeks.

He gets me back on track when my mind wanders off to that trip to the Cascade Mountains or when in the middle of a movement I forget what I was doing or what my objective was.

I was always the avid reader and Ms. Spelling Bee International (only in MY mind-smile). Not anymore. I use incorrect (but sometimes similar) words and have to read & re-read to correct something.

I read this headline "I Have Dementia - Other Sufferers Here?" and what goes from my eyes to my mind is "I am a Democrat, Other Insurers Here?" Only after I try to read (sometimes understanding, sometimes not) the article do I realize it says nothing about democrats nor insurers. So I go back to the headline to re-read it.

It then reads "I Have Dementia - Other Surfers Here?" You get the idea. Sometimes I never figure out what I am seeing and just give up. I can read each word but collectively, they make zero sense. I guess I forget each individual word as soon as I read it. I often just give up and say I'll try another day. Sometimes I do re-try, sometimes I dont. Sometimes I decide it won't make a hill of beans if I die tomorrow and toss it. WATCH WHAT I THROW IN THE GARBAGE CAN - IT COULD BE IMPORTANT.

Good days, bad days, and worse days. Last couple of days have shown an upswing - thus my being here!

I am very happy to have enough of me left to communicate for now. I will endeavor to do so until I no longer can. If I forget to use that final spellcheck before putting it over here, please forgive.

Best wishes,
Alice

*****That thing at the tip of a squirrel's butt is a towel.*****

My Dementia -

-Zero multi-tasking allowed.

-Please do not talk to me when I am concentrating on something that is important to get done. It might take me hours or days or weeks to get back to that depth of concentration again and get that task completed.

-I go to brush my teeth. I can't get the toothpaste to stay on the well-spaced plastic bristles. It is my hairbrush.

-I intend to write the words "lines one and two." I proof it and it reads "lease one and toe." Me, the former Ms. "GO TO" for spelling anything and everything.

-I am in the shower. What have I washed? What haven't I washed? I start over...and over...and perhaps over again. I finally get out of the shower hoping I got everything at least once. ((any ideas on how to work around this problem when I am alone would be greatly appreciated))

-Find myself looking inside something and wondering why, since I've never kept anything in it.

-Drove myself to Mom's house about 1.5 mile from here - the same tracks I walked 100's of times growing up - and sitting at a stop sign wondering where I am and if I have already been at Mom's or not. (I quit driving after that)

-Sometimes slurred speech or can't even find the word. Spend more time pointing at the bird rather than trying to tell hubby to "look at that bird."

-Going to the store is overwhelming - too much input - too much light - too much noise.

-Going to any crowded place is frightening and extremely confusing! Can I hold onto your arm so I will know which way to walk?

-You tell me to hold my hands a certain way but have to show me how before I can.

-Read sentences incorrectly. Can sometimes read individual words just fine - but collectively, those words don't mean anything.

-I don't remember the word/words I just finished reading or writing.

-Words always look mispelled

-Can't do simple math anymore.

-Count money: twenty...forty...sixty...forty... a hundred.. ... what did I just count? start over ... ten...twenty... no no... twenty...fifty.... aw hell!

-You are speaking to me. I forget what you're talking about before you finish the sentence. I ask you to repeat it and try to hold on tightly and squint my eyes to understand.

-You are looking at me and speaking - but then you turn head away from me mid sentence. What did you say after your head turned? I haven't a clue. By now...what did you say to begin with?

-The TV is on and you are talking to me. I cannot understand you nor the TV.

-Sometimes can't get my response to come out of my mouth even though the words are inside my mouth.

-Forget to take medicine or not sure if taken.

-I am fixing a sandwich. No I cannot talk to you until after I have eaten. I can concentrate on only one thing at a time. Remember...no multi-tasking.

-Eyesight worse - sometimes things not quite 3 dimensional anymore.

-Sitting on high deck in backyard and grandchild said "hey grandma" and I responded by looking across the backyard for her. She was right below me, and very close, and said "down here grandma!"

-For months before stopping work in May 2008, I suspected someone was sabotaging me - things missing on my desk, but then found them right where they should have been. Looking for file in cabinet - not there - went back later - it was there.

-At my office - disoriented when walking out of the bathroom or copy room, not knowing which way my desk was - getting off elevator onto wrong floor - taking wrong bank of elevators

-Boss asking if I had done something in specific. I knew that I WOULD have done it, and I knew HOW to do it - after all, I'd done that job for years and years - but I could not actually REMEMBER doing it. (People don't like to hear the words "I don't know.")

-At home, I couldn't find the keyboard for my computer. I looked under my desk - on the floor - all around room - the next room. I found the keyboard - right in front of the computer screen where it has always been.

-Making symptom list for doctor. Reading afterward the words "disney first bites" on the list.

-Why is my shirt on backward? And why didn't someone tell me since its been this way all day?

You are truly and amazing woman. My Dad said one day that there are heros in our midst every day. How true this is. You have shed so much light on some things for me that will help with my Father so much.

Reading and writing was one of his true loves. He now can only read headlines. No one in my family seems to understand this as he was such an avid absorber of the written word. I summarize articles and read to him now, quietly with no disruptions. Poetry is still one of his favorites.

He's my hero and you've helped me already more than you can know in helping understand what I can do better to support him.

Godspeed and I hope you have a wonderful peaceful weekend. Cathy

I'm curious ifu cannot remember what happens to u three minutes ago how are u able to tell us all of what is going on with u?I know we all suffer from dementia, forgeting something u just did is a form of dementia. I'm not familiar with ur situation but i would love to undestand it better!

Hi Marysmum -

I am in the early stages of dementia. My mind is still intact, it just does not work properly and at its very best, slowly.

You would probably do best by asking the caretakers here or go to Google to read about dementia.

The people these DS caretakers take care of DID NOT just wake up one day and BOOM - they began behaving this way.

Dementia is a progressive disease - it has a beginning and an end.

To understand my future, and the progression of this disease, just read the stories about the people who are written ABOUT in the postings here. They cover all stages of dementia.

There are also a couple of members here with dementia at about the same stage as mine. Our stages, daily lives, and symptoms are essentially identical, with the exception that they still drive and I do not.

I am glad you stopped by! I hope in ALL things you will continue to question what you do not understand, all the way to the point of understanding.

Best,
Alice Faye

Marysmum - p.s. - In answer to your question, I send myself emails immediately when I think of something I need to do.

I also keep a WORD page on my desktop where I try to note things I want to remember or just strange things that happen - a journal if you will.

I was always a fast touch typist so I can type as I think (albeit slowing and incorrectly - but I go back several times and make corrections til I am comfortable with something).

I seldom need to remember what I type but when I do, I print it and summarize with 2-3 words on top right.

Also, my comp screen edges are covered in yellow stickies with nots. Often, things I verbalize personally stay with me for a while.

One other member on DS makes notes about places to drive and what to do while there.

That is pretty much how it works.

Best, Alice Faye

I too have non-alzheimers dimentia, diagnosis Multi Infarct Vascular Dimentia. Like alicefaye I would like to apeak/communicate with the ones suffering from this awful disease. This is a very difficult disease and thank you to alicefaye for explaining it, I have all of the same symptoms/issues.
I think the hardest part for me is knowing I am having all of these issues yet my children seem to be in denial. Because I have some good days and have always been very strong, when I am "weak" they seem to become very aggravated with me, almost to the point where I think they don't believe I am having as much difficulty as I am. I have lost my job after 35 years of service and am about to lose my home, they (my children) are just sitting back (not intentionally I'm sure) waiting for me to once again pull through another one of lifes dilemas, well I can't and they don't seem to understand. One daughter is an RN and she told another daughter to let me work through my issues myself and not to enable me to "sit home and not work". As I said I have always worked full time (since I was 16) and staying home is the last thing I choose to do. This is a very lonely road to travel. I have read many of the posts from the caregivers, just the fact that you are on this site shows that you truly are a wonderful caring person, please don't ever give up on the ones you love.

Alice, first of all welcome, and secondly I would like to back up cathy aka pounder that individuals like you and marianne really give some of us a wonderfull insight on caring for our loved ones. My grandmothers memory is hit and miss, I think the namenda helps out alot, but who really knows. She is what most would clasify as later statges. She has no reccognition on things like when she needs to use the bathroom, or when she showers what needs to be done. But at other times she can tell me what happened 2 weeks ago, but can't remember when her children were little. It's hard but when I hear stories like you it just mankes me want to try harder for her. lots of love and blessings Gina

Hi, alice faye, I was wondering what had happened to you, I thought about you a couple of days ago and saw you did not have anything on since August 13 and glad to see you are having a good day. All the advice and what you wrote are good for people that do not deal with what we have to at least see a little bit what we go thru. I accept the fact that I have dementia/alzheimers and I seemed to help the progress to slow its down hill spiral. My spelling has gotten worse and I think it has always been that way LOL. I also try to keep a sense of humor and just keep learning as much as I can for what will be coming down the road. I also have made many adjustments like you have for me to function better with this disease. I just do not like to be miserable and yes I know that I no longer expect to live into my 80's like I once did and most of my ancestors have, I just try to have the best day I can even when they are not so good. I really do not try to convince or try to explain my disease to anyone that do not understand what we are going thru because I would not understand it either, it so weird to a person that their brain is functioning with all their brain cells working correctly. I have a friend (Pat) that has done what you have suggested only she knew what was going on with me before I did because of her medical back ground. She has been the best for me and I trust when she says I am doing some goofy things (I always did miss the toilet at times when doing a number 1 so I can not blame that on my dementia HAA HAAA HAA). The best thing I have done for myself is to give a name to the other me (dementia/alzheimers) and it is my childhood nick name, Flops, so when I do something off the wall I can blame it on Flops. I am not in denial about alzheimers, because to me what makes a difference what they call me disease and when does dementia turn into alzheimers, to me what makes a differences, I was told by my Dr, dementia is more of a symptom than a disease turn usually turns into alzheimers for about 70% of poeple also some turns into huntingtons disease and Parkinson and other disease but most MD's do not know enough about brain disorders and most of all it is hard to understand the process and like I said what makes a differsnce anyway. Enought for now, nice to hear from you again and as always God BLess Phil & Flops