RSS Feed Print
How do you feel about social gatherings?
Iris L.
Posted: Saturday, June 28, 2014 10:08 PM
Joined: 12/15/2011
Posts: 18357


Do people with memory problems withdraw from social gatherings because they have trouble remembering people's names and recalling faces?

I find it hard to remember names of people I have known for decades.  I feel embarrassed and I don't want to go back.  Today was my last social gathering.

I also got turned around trying to find the house in the neighborhood that I used to live in, ~40 years ago.  I wouldn't say lost.  I just drove around until I found the right street.  This took about 15 extra minutes.
 

 

Some days I think I'm doing great.  Then I have today. 

 


Iris L. 


Lisa Ramey
Posted: Sunday, June 29, 2014 9:00 AM
Joined: 6/20/2014
Posts: 160


Iris,

I use to be a social animal I just loved it. Now I get overwhelmed. I just can not take the "drama" and I find the things folks complain of so petty in the grand scheme of life so I just chill at home with husband and sons. Thanks to Namenda I can read again.. my passion.

I guess my main reason for not being social is that my life is far from normal. I am a full time mom/caregiver to an adult son with MR and Autism; I still change diapers 26 years later. So not much in common with most folks. 

I will confess I love to prowl through thrift stores, especially the Goodwill. So for me socializing has just lost its appeal, for many different reasons just add early onset to the list.

LIsa Ramey


Iris L.
Posted: Sunday, June 29, 2014 12:35 PM
Joined: 12/15/2011
Posts: 18357


Lisa, I believe you are absolutely right.  Although I had known some of these people for almost 40 years, I had nothing in common with them any longer and I had nothing to contribute to conversation.  They were still busy with their lives and I had nothing to talk about with them.  They  talked about their families and their vacations and I don't have an immediate family to talk about and I didn't go on any vacations with them. 

 
You've opened my eyes more than you know, Lisa.  My life now revolves abour my health, but also around my activities of travel, animals, and now photography, which other people are not interested in.
 

 

Lisa, today is another EUREKA day for me, because I learned something new about myself.  You reinforced that I must make a new life for myself and focus on my own interests, and not rely on my former life and former friends for my self-esteem.  This is an important discovery for me!   

 

Thank you so much, Lisa!  You have given me more insight than years of professional psychotherapy!        ! 

 

Iris L.



 

 

 


Myriam
Posted: Sunday, June 29, 2014 1:02 PM
Joined: 12/6/2011
Posts: 3326


I have not been able to remember peoples names since I was born! Years ago, I ran for office for a state legislative position, and fortunately had a husband who was great at remembering names. As a voter I recognized approached me, my husband would whisper the person's name. I would then put out my hand and say "Hi, Bob (or whomever) How are you?".


What bothers me the most now is noise, including being in a room with people talking. It's becoming difficult for me to differentiate what is being said, so I'm beginning to tell people more often "Hey, remember I've got Alzheimer's. Please speak more slowly." I believe that because we appear to be "normal", most people forget they need to address us differently. For me that means, looking at me and speaking a wee bit more slowly and clearly.


A couple of days ago, I flew across the country by myself and managed the connections OK, but didn't hesitate to grab a person to ask for directions when I was confused on which direction to take. I have found that when I say to someone "Hey, I need help. I'm in the early stage of Alzheimer's and am a little confused on which way to go", people go out of their way to help me.


I also feel with these encounters it gives me the opportunity to raise awareness about Alzheimer's.


nomemo
Posted: Sunday, June 29, 2014 1:39 PM
Joined: 3/21/2012
Posts: 439


for me, it's not so much the memory loss, it's the auditory and visual over-stimulation.  and i can't process conversation with more than 1, maybe 2, people.  when it's overwhelming, i get very panicky and want to leave.  sometimes starting to cry.  this even happens in church, which is why i usually sit in the back in case i need to leave.

 

i'm invited to a bridal shower and wedding of a friend's daughter soon.  i've seen this person grown up since she was a baby.....graduated from college/nursing school and now getting married.  i so want to go but if i think about it too much it overwhelms me.  i'm not sure when the shower is, but i think it's soon.  wedding is september 6th.  her mom wants me to come but says she'll understand if i don't because of the FTD.  insidious disease.


Mimi S.
Posted: Sunday, June 29, 2014 1:50 PM
Joined: 11/29/2011
Posts: 7027


Myriam,


You and I are on the same page about telling people out diagnosis.


We look so normal yet do stupid things. At least I do. i now realize that my very low test score of "executive function" does have consequences.


I live in NE PA and have another neurological disease that makes me only comfortable between 71 and 78 degrees  F.  Hot air was blasting from the car air conditioner. I got out the book, followed every step and could not solve the problem. So, I was actually able to call Saturday morning and get told, sure, bring it in. The owner soon came and got me for a test, drive thermoeter in the controls; cold air spewing forth. As he carefully explained what he was seeing, I realized that I had so carefully made sure that the indicator had been turned fully to the red side. No wonder hot air poured forth. 


Now, I know perfectly well that red means hot, but that part never got past the AD part of the brain.


Actually, I expected to feel really stupid. Amazingly I didn't. I just shrugged and explained: it's that stupid AD.


And I also do not like large crowds; the noise makes my head spin. I live in a small community and my condition is known. So folks are used to telling me their name, again and again. Surprisingly  that also doesn't bother me. It's the way it is.


iris, I still believe that socialization, although maybe not as necessary as exercise, is important. So I have to make more of an effort to socialize with just one or two people.  When you are at your photography sessions, isn't there some interaction with others? That counts big time.


And Lisa, it's good to see you interacting with us. Do look for an early stage group in your area. In my opinion, it will do you a world of good to find someone else who has also been so diagnosed. It would be nice if they were as young as you are, but in the long run, age isn't that important. 


Mimi S.
Posted: Sunday, June 29, 2014 2:00 PM
Joined: 11/29/2011
Posts: 7027


PS, especially for Lisa. Sometimes when one read or posts on a thread one is interested in hearing what others are writing about that topic. I have problems remembering what post I was interested in.

It doesn't work while you are writing a reply. After you post and it takes, go to the top of the replies. There are three small icons on the right. Hit the one to the left. A page comes up. Click on subscribe. When someone else posts you'll receive an e-mail notification. 


Iris L.
Posted: Sunday, June 29, 2014 2:53 PM
Joined: 12/15/2011
Posts: 18357


Mimi S. wrote:

 After you post and it takes, go to the top of the replies. There are three small icons on the right. Hit the one to the left. A page comes up. Click on subscribe. When someone else posts you'll receive an e-mail notification. 


Mimi, you came to the rescue again!  I never paid any attention at all to those icons.  Now I know.   

 

I generally read all posts, so I can usually find the ones I am interested in or have posted on.  But sometimes I don't remember and can't find them.   

 

Thanks for letting me know this great tip, after 5 years of being a member.  Ha Ha!

Iris L.
 


Mimi S.
Posted: Sunday, June 29, 2014 2:56 PM
Joined: 11/29/2011
Posts: 7027


Well I was told about it years ago, but forgot. I'm trying to use it more so it will get it not the memory.
Lisa Ramey
Posted: Sunday, June 29, 2014 4:12 PM
Joined: 6/20/2014
Posts: 160


Ms. Iris/ Dr. Iris,

BY GOSH YOU MAY HAVE NOT HAD MUCH FOR YOUR FORMER SOCIAL GROUP, BUT HERE YOU SHINE LIKE A NEW DIME!!

I have been lurking and reading and my goodness..... you sister reach out to any and all. It's a shame you no longer practice medicine. I can see you as a good candidate for Doctors without boarders. I do thank you for the complement.As we say here in the South " Bless your heart, your just a good ole soul"  

LIsa Ramey


Lisa Ramey
Posted: Sunday, June 29, 2014 5:11 PM
Joined: 6/20/2014
Posts: 160


Ms Myriam,

Thank you for the suggestion.  I am not ready for a support group just yet. See its easy to be here in our online group but in person.....not so easy for me. I have only known this for about a month. I am still processing this in my mind. Saying it outloud ah well not ready for that.Perhaps in due time.

Lisa Ramey


Iris L.
Posted: Sunday, June 29, 2014 5:53 PM
Joined: 12/15/2011
Posts: 18357


Shucks, ma'am!  Lisa, the wisdom and encouragement and inspiration that's shared on this board is AMAZING!  We're so fortunate to have each other!  I don't think anyone can make it through an MCI/CI or dementia diagnosis without support from people like ourselves.

Iris L.

jfkoc
Posted: Sunday, June 29, 2014 6:21 PM
Joined: 12/4/2011
Posts: 21131


And so dear Iris, let's hear about the photography. I studied it at the Chicago Art Institute an loved the darkroom. Guess that dates me!
Mimi S.
Posted: Sunday, June 29, 2014 6:56 PM
Joined: 11/29/2011
Posts: 7027


Are you from the Chicago area? 

 

I spent my marriage years in a nearby suburb. I'd bring my 6 kids plus one foster kid to the Art Institute on a family pass. The foster kid was older and looked nothing like my kids. A few times I was questioned, "Are they all yours/".

Each kid could choose a small photo of an art piece each time. We had our own gallery on the back stair case. Wonderful memories.

Another story. I received a cameras as a gift when I graduated from Grad School and was advised o take a camera course. Didn't get to it for a year.

I was teaching Child Development at that time and that day had looked at a review copy of an upcoming text. I walked into class the first night and there were blowups from the book positioned around the room. Out of my moth comes: Where did you get those photographs from ... it's not out yet. And the rejoinder was: Yes, my daughter took the photos. And the book is not out yet. Where did you see them?  And thus began a great course and friendship. He even encouraged me to submit one of my photos to a national child development magazine.it made the front cover. But then life got too busy to do so again.  More great memories. 

 

I have AD but haven't thought about that story in years. 

I swear my memory is like swiss cheese. I never know what will be there and when I just hit a big space.


Iris L.
Posted: Sunday, June 29, 2014 9:38 PM
Joined: 12/15/2011
Posts: 18357


A memory like swiss cheese--that's a good one, Mimi!

Jfkoc, I took my camera class at one of the local Adult Schools.  All except one student were retired seniors.  There were 8 students.  Half of us had point & shoot digital cameras; the other half had SLR digital cameras. 
 

 

I have had my camera since 2007, but I'm just now learning all the features.  I learned I have a zoom feature, can shoot closeups and distance photos, can shoot in different light settings, can shoot action shots.  We also learned how to compose a good photograph, and some photo-editing techniques. 

I plan to get more use out of my camera over the summer.  I wish I had known these techniques before I took my overseas trip.  Well, this gives me an excuse for another trip. 

Iris L.
 


TruthfulKindness
Posted: Sunday, June 29, 2014 11:29 PM
Joined: 7/26/2012
Posts: 9


Hi All.

I withdraw from social gatherings because noise and too many bodies/action creates visual "noise" which I cannot handle.  Even at our local congregation/worship group, if there are more than about 6 cars, I ask my husband to turn around and go home, even tho we know most anyone who would attend.  It is just too much.

 

Truthful L. Kindness 56yo with probable Lewy Body Dementia


jfkoc
Posted: Monday, June 30, 2014 8:47 AM
Joined: 12/4/2011
Posts: 21131


Mimi...yes, Lake Forest. Sheridan Rd was my trail all up and down the North Shore. I miss Chicago soooo much. Everything about it. I wonder if  Dick could make the trip. It would be fun in Oct to catch the leaves. Did you ever go to Ravinia?

Iris....take your camera out for a walk....one of our projects was to take pictures of "trash"...very interesting. I then did a slide show of my daughter and one of her friends to the music of Sesame St "Somebody Come and Play"...what a trip to the past and another life.

I don't think we have a camera that works anymore but our joint collection includes 4 old Nikons.


Mimi S.
Posted: Monday, June 30, 2014 10:52 AM
Joined: 11/29/2011
Posts: 7027


We lived on the near west side: Oak Park. It was as wonderful place to bring up kids. I only went to Ravinia a few times. We also did concepts in back of the Art Institute. I'd drive down in the afternoon, park around the Field museum, go to that museum, and then meet my husband for a picnic and concert.

 

Yep carry that camera and take what interests you. And if your teacher has Photoshop or something similar for you, the fun begins. I hate posed photos but love just to walk and click whatever moves me.


jfkoc
Posted: Monday, June 30, 2014 12:00 PM
Joined: 12/4/2011
Posts: 21131


Mimi...when I was little we lived just a few blocks from Ravinia and could hear it from our house.

Regretfuly I never did the other concerts.

Oak Park is such a wonderful suburb with such architectural history. There was a FLWright house in Highland Park that they were going to tear down!!!!


Iris L.
Posted: Monday, June 30, 2014 12:25 PM
Joined: 12/15/2011
Posts: 18357


I went to the Frank Lloyd Wright Museum in one of the neighborhoods.  I have always loved his architecture. 

 

I also visited the Sears Tower. Chicago has such interesting architecture. 

 

Iris L. 


Mimi S.
Posted: Monday, June 30, 2014 1:33 PM
Joined: 11/29/2011
Posts: 7027


Iris, You were probably in Oak Park, where Frank Lloyd Wright began his career. I taught elementary school there. Once when I was teaching first grade, at a faculty meeting, the principal announced that someone involved in FLW would come to our classes to give introductory talks. Well, I immediately questioned who would have the expertise to be able to give it at grade level. It was a fellow teacher, excellent. So I signed up and she gave a presentation to the class. We took our first graders to the Home and Studio. Now, when the rest of you ordinary citizens visit the dining area, you are held back, not allowed to touch anything. My kids got to sit in the chairs and experience how he had made that space so snug. And poor, soon to be ex Mrs. He was constantly changing things. Ex. dining room. He began with an empty lot next door and wonderful full windows to enjoy the space. Alas, he didn't own the space and someone put a Queen Anne Victorian in that space. Out went those windows and in went tiny windows placed at the top of the wall to let in air in pre-air conditioned days. 
And I was involved with that organization for the rest of my tie in Oak Park. organized a unit in architecture for my third and fourth graders. More good memories.
And I do remember thinking about how the neighbors at Ravinia must enjoy the music.

jfkoc
Posted: Monday, June 30, 2014 4:15 PM
Joined: 12/4/2011
Posts: 21131


Mimi...how wonderful and what an exceptional opportunity to actually sit in the chairs etc.

Iris....yes, Chicago is a great city and the birth place or so many innovative structures. Have you been on the architectural boat tour? I do so want to do that. Someday.....maybe............sigh

 


Mimi S.
Posted: Monday, June 30, 2014 4:31 PM
Joined: 11/29/2011
Posts: 7027


I know I did the architecture walking tour. I have this vague memory I also did the boat tour???  Also studied a good deal about Louis Sullivan.
Iris L.
Posted: Monday, June 30, 2014 6:46 PM
Joined: 12/15/2011
Posts: 18357


Mimi, your memory of the tour with the first graders is extraordinary!  My long term memory is becoming vague.

An archtectural tour on water would be wonderful.  I spent only one day in Chicago.  I had always believed that Chicago was a duplicate of NYC, but I see it has a completely different style with many unique buildings.
 

 

I've been to many countries overseas and many places in this country.  I remember being places, but I have limited memories about what I saw in those places.  For example, I remember visiting the FLW house, but I don't remember anything about his story.   

 

But I do remember enjoying myself in every place I've been!

Iris L.
 


Mimi S.
Posted: Monday, June 30, 2014 7:52 PM
Joined: 11/29/2011
Posts: 7027


New York is so huge; Chicago always seemed so compact. Where in NYC could you within just a few blocks, see an art museum, a museum of animals, an observatory, go swimming and enjoy a concert beside a beautiful fountain and wit water lapping in the background? 
Of course, both do have their dark sides of poverty and corruption.
My long term memory for things that had an impact on me are fairly good. Lots of minor stuff are gone.

alz+
Posted: Thursday, July 3, 2014 8:58 AM
Joined: 9/12/2013
Posts: 3608


I am noticeable when out in public, people do not know what to think: Options - crazy, drunk, drugged....dangerous?

 

I try to dress "normal" and walk "normal" but if my husband is out of sight and it appears I am alone, FREE RANGE, people react more standoffish. When my husband is near by it's like, "Oh ok someone is handling this woman."

 

Dislike noise and being unable to participate in conversations that involve many people talking at once.

 

Since my family is apparently disturbed by what they call my "condition" we nixed being around them, not that they want to be around me. My kids are adjusting, adult children. My daughter has become super helpful and I am always relaxed around her as she is protective and ultra competent.

 

Been clinging to my husband physically more often when out and about and he understand now. I also told him to smile at people if they are looking at me with the WTF expression and it works every time.

 

My exercise class is a place to be with people and not talk and I am accepted as I am there and yes to Thrift Store Browsing, very understanding people there where I can do minor tasks for them. Where I feel useful. This month will be seeing my grown up step-children. I think they will be understanding and fine but they are loud and socially engaged talkers so will leave it to their Dad. retreat and restore - my current motto.


Iris L.
Posted: Thursday, July 3, 2014 9:52 AM
Joined: 12/15/2011
Posts: 18357


Mimi, as usual, you're right.  The long term memories I do retain are those that have had an impact on me.  They are like the trees.  The other memories that have faded are like the forest.   

 

This analogy is from the saying, "You can't see the trees for the forest."  In my case, I can see (remember) the trees (impactful memories), but I can't see (remember) the forest (vague memories). 

 

I was beginning to become upset that I couldn't remember more from my past, but I discover that I can't work on remembering the past and wok on remembering the present.  I have to focus on the present.   

 

Thinking too much about the future is beginning to be a problem, too.  The present is where I need to be! 

 

Question:  Are memories overrated? 

I have good memories of my past, but I'm no longer living "the good life" I used to live.  I've got to make peace with the life I am living today.



Iris L. 

 


Paul Hornback
Posted: Thursday, July 3, 2014 4:28 PM
Joined: 8/9/2013
Posts: 584


Iris, I suppose memories can be important to some people. However, I don't worry about the past and, like you, I just try to live peacefully in the present. Besides, it takes all my brain power to just keep going in the here and now. That way I don't have to worry about the future, I just leave it in God's hands.

God Bless, Paul


llee08032
Posted: Saturday, July 5, 2014 11:13 AM
Joined: 5/20/2014
Posts: 4408


I've been a social recluse for several years now. I do have difficulty with crowds, sustaining conversations, noise and social interactions involving more than one person. I feel lacking in the motivation to put myself out there socially and friends have faded away as a consequence. I do feel lonely frequently. The aphasia is noticeable so I oftentimes feel self conscious when interacting and try to keep interactions short and brief. 
I have to get back to neurologist and follow up with tests but I don't want a diagnosis on insurance records and I'm trying to hold on with working for as long as I can. I am afraid not to work! Work zaps all my energy but when I don't work I basically do nothing and feel like I'll just waste away w/o work. 
Nevertheless, I'm going to make that call Monday, pick up that 100 lb phone and schedule to see the neurologist and stop procrastinating because I may need to be on medication and I need support and some type of plan. Like you Iris, it's just me and no family that I can depend on and I really need to push myself to take care of me.  
I am a hot mess! I smoke, overeat, do not exercise or have any structure in my life other than work. I just do't feel like I'll be able to pull it off like some of you here with taking care of myself and following Best Practices. Kicking myself in the BUTT!

llee08032
Posted: Saturday, July 5, 2014 12:05 PM
Joined: 5/20/2014
Posts: 4408


Iris,

Maybe it was just the wrong type of social gathering and hopefully only "the last" of this type of gathering! 

 

Let's imagine a social gathering if you will where it's okay and expected that will forget each others names. Perhaps will remember each other by a physical feature such as the eyes or some other meaningful characteristic. The gathering would be informal and laid back. It would be fun and okay to laugh not at but with each other. There would be no pressure, no awkward silence. It's totally acceptable to forget your table manners, where your shirt inside out or not have combed the back of your hair.

 

 Everyone is given step-by-step directions on how to get back to where they live or came from. 

 

Some talk about their struggles while others talk about successes and coping. Others share about holding on and finding meaning and purpose. Perhaps some will share some precious moment in life that they especially try to remember and never want to forget. Of course they've captured the moment on paper and go over and over the details time and time again trying to keep in it's place.

Jokes should be told and the parts left out should be more funny than the punch line.There should be a few tears but only when mingled with laughter and hugs. 

 

When the gathering is over saying "goodbye" out loud is forbidden!

 

Please feel free to fill in your ideal or current wish of a social gathering you would like to attend...

 


Iris L.
Posted: Saturday, July 5, 2014 2:19 PM
Joined: 12/15/2011
Posts: 18357


llee08032 wrote:
 
Nevertheless, I'm going to make that call Monday, pick up that 100 lb phone and schedule to see the neurologist and stop procrastinating because I may need to be on medication and I need support and some type of plan. Like you Iris, it's just me and no family that I can depend on and I really need to push myself to take care of me.   
 
I am a hot mess! I smoke, overeat, do not exercise or have any structure in my life other than work. I just do't feel like I'll be able to pull it off like some of you here with taking care of myself and following Best Practices. Kicking myself in the BUTT!


 

 

I'm so glad you posted, Ilee, because you are where I was a few years ago.  First of all, I want you to throw out referring to yourself as a "hot mess"!  You are a WORK IN PROGRESS!  Sometimes we need to give ourselves a good wake-up call, but then it's time to gather our forces and move on.

Since I don't have family close by, I had planned to rely on professionals to help me.  I discovered that there is really NO COMPETENT help from professionals for me.  They told me to my face that I had no memory or cognitive problems.  Thus they gave me no guidance.  It took a long time, but I finally realized that I cannot rely on the professionals in my area to help me.

Once I had that realization, I came to the determination that my INDEPENDENCE  will be my PRIORITY.  This means I will retain the capability of living on my own and making my own decisions for as long as possible.  I might have to downsize my lifestyle to a great deal, but as long as I can make my own decisions, that will be fine.

I've learned from reading the Caregiver board and the Spouse/Partner board that there is a prolonged learning curve for family members to learn how to care for their loved ones with dementia.  Frankly, I don't think I can wait that long.  If it gets to the point where I do need further care, I will do like Mimi S. has done, and search for where I want to live and make my own arrangements.  I'll  ask my family to visit me.  I'm also going to write out detailed notes and guidelines for them.  This will be hard, but I have no other suitable choice for myself.  My alternative is to suffer the horrendous care that I read about on the boards that some patients suffer.
 

 

So Ilee, consider these thoughts for yourself.  YOU are the only one you can rely on.  YOU are a worthwhile person.  YOU are a contributor to society.  YOU deserve to live a good, clean, comfortable, well cared for life!  Don't allow yourself to be degraded and neglected!  Fight for your life!  Fight for YOURSELF!

There is much that can be done to help yourself.  I've been on these board for 5 years and I've learned so much from the other members.  I'll be very much pleased to share what I have learned with you.  Mimi shared her knowledged of Best Practices with us, and see how much that has helped all of us!  Other members have also shared their own treatments and successes.  There is hope for us!

Take things step by step.  A geriatrician chastised me in 2009 for eating fast foods.  I told him I was too exhaused to shop and I was afraid of using the stove, anyway.  Going through the local drive-thrus was the way I got my nourishment.  But slowly I figured out alternatives to the drive-thrus.

I don't know how close you are to retirement age.  I was 37 when I went on disability.  A long way from retirement.  It was very rough in the early days. I had to sue my employer to get my long term disability pension reinstated, because in those days, LTD was limited to 2 years if the diagnosis was a mental illness.  I was initially diagnosed as depression/anxiety.  Still with that diagnosis, but now with other diagnoses added.
 

 

Do you know what helped me with changing my eating habits?  Shortly after that doctor visit, I found a lost rabbit.  I kept the rabbit and purchased fresh vegetables for the rabbit to eat.  The rabbit could eat only so much, so I began to eat the rabbit's leftover fresh vegetables.  That's how I got back to eating raw veggies and eventually salads,  LOL 

 

Please write back Ilee, and post your own thread.  There is more I can help you with, and others will help too.  Do you have disability insurance as a job benefit?  If not, you would have to apply for Social Security Disability Insurance if you become unable to work.

But please be aware of this, Ilee.  It is not definite that you have dementia!  There are so many other causes of the memory lapses and the difficulty speaking and the low energy that you describe.  Medical causes and depression and sleep apnea--all of these need to be investigated and treated if found.  I had much improvement in fatigue after using C-PAP for sleep apnea, which I apparently had for many years, undiagnosed.  I'm also on thyroid medication and treatment for high blood pressure and anti-inflammatory medication for lupus.

You did not mention if you had been evaluated for adult ADD.  That can be undiagnosed for years, and causes poor functioning at work.  Females are usually not hyperactive like the males, but are often in a "dreamy" state.
 

 

Check everything out.  I don't know how much has been done already.  Yes, there may be treatment for you.  You do need support and you do need a plan.  We can't give you treament, but we can support you and we can help with a plan.


Iris L. 


llee08032
Posted: Sunday, July 6, 2014 10:35 AM
Joined: 5/20/2014
Posts: 4408


Iris,
Thank you so much for your words of encouragement and hope! 
I am going to PCP tomorrow and will schedule appt. with neuro doc. Little steps...I can schedule to takes some days off from work  because I have been feeling overwhelmed. This time I will follow through with the sleep study and MRI.
You are on point with the sleep d/o and ADD. I remember a teacher telling my mother that I stared out the window in class daydreaming! 
The idea of choosing a place to care for me when I can no longer care for myself actually came to me many years ago! We should have a CHOICE while we still have the capacity to CHOOSE and exercise sound judgement in how we want to be cared for! Surely others like Mimi are researching care facilities and we should be sharing the pro's and con's of each type of setting so we can plan accordingly. If you know where I can find this information here please let me know.
My family can barely take care of themselves and my CHOICE would not involve them caring for me. Naturally, I'd like them to visit but don't think I could count on that either and wouldn't want to set myself up for disappointment! 
I guess I'm over reaching but I would love a place where there are dogs and cats to love and care for!

Myriam
Posted: Sunday, July 6, 2014 12:43 PM
Joined: 12/6/2011
Posts: 3326


 Here is a website for housing options in your state. There is another page that list services and support. I've pasted some info from that page below. Hope it will get you started.  Also consider calling your Alzheimer's Association chapter in your state. They will have a list of resources not only for housing, but also for doctors and diagnosticians whom can figure out what is going on with you:   http://www.alz.org/nj 

 

http://www.nj.gov/humanservices/doas/home/housingglossary.html 

 

This office assists the 21 county Area Agencies on Aging in developing comprehensive, coordinated service systems for adults aged 60 and over. Services funded and available through the Area Agencies on Aging may include information and assistance, outreach, transportation, case management, homemaker, visiting nurse, respite, telephone reassurance, hospice, escorted transportation, adult day care, legal assistance, education, caregiver support, etc. Meals provided in a group setting and delivered to the home are also available through the Area Agencies on Aging. 

 

Alzheimer's Adult Day Services
The program partially subsidizes the purchase of adult day care services for persons with Alzheimer's disease or a related dementia.
 

 

 Congregate Housing Services Program 

This program provides supportive services to individuals who are elderly and disabled residing in selected subsidized housing facilities. 

 

 Statewide Respite Care Program  

This program provides relief for unpaid caregivers by ensuring their loved ones are cared for while the caregiver takes personal time. 

 

  

Here are phone numbers to call for more information:  

 

For Medicare counseling and general aging services questions: 1-800-792-8820
For PAAD, Sr. Gold, Lifeline: 1-800-792-9745
For access to aging services in your county: 1-877-222-3737
 


Mimi S.
Posted: Sunday, July 6, 2014 1:31 PM
Joined: 11/29/2011
Posts: 7027


Hi Llee, 

Welcome to our group. From where you live, I think you are a member of the Delaware Valley Altzheimers Chapter. Since  part of that chapter covers the Phiilly area of PA you are a neighbor. It's a great chapter!!!  Do call their # and get acquainted. Philly has at least one excellent site for dementia testing. And you do want the best. Any old neurologist is not trained enough.

Since it will take awhile to get an appointment, from your library do get and read a copy of : The Alzheimer's Action Plan  by Doraiswamy & Gwyther of Duke Univ.

And to all, Social Interaction is one of the Best Practices that several of us harp on. The group can be as small as two; it's just so improtant that you have intera tion with others.



And Llee the group that you write about is a reality, but there are too few. They are called Memory Cafe's. And they are a safe place for those of us with memory problems to interact with others so diagnosed.

Also, if you are diagnosed, even with MCI, please check with your local chapter about Early Stage Support Groups. Again, too few and too far apart. The GreaterfPA Chapter also has a phone support group that chats monthly and another monthly group just for those diagnosed with Younger Onset (diagnosed before 60/65; usually while still working.)

 


Sandymac
Posted: Sunday, July 6, 2014 5:16 PM
Joined: 10/31/2013
Posts: 1791


Thank you all so much for these posts.  Especially you Iris for putting the link on the other forum

 

My husband is in middle stages or alz but doesn't know he has it, and every time we go anywhere he wants to come home soon after getting there.   Two hours seems to be the most he can handle.    

Reading your posts has given me an insight into what is going on in his mind..........

 

Won't make me any happier, but maybe I'll be more tolerant