My most important thought

Iris L.

My most important thought about living with cognitive impairment is to develop a philosophy of living.  This is important for guidance in what I am doing and why, because I frequently forget.   I find that I have to reinvent the wheel, meaning, that I have to figure out what I am doing all over again.

My philosophy about living with cognitive impairment, in a nutshell, is this:  I I will not become a burden to my family or friends.  Thus, I will do whatever it takes to maintain my independence.

I was doing fairly okay for a long while but now things are worse.  Covid and the lock downs didn't help.  That's why I need my philosophy to keep me focused and to keep me from getting discouraged.  I have to focus on maintaining my independence!  That's the only thing!

Iris

OutsideLookingIn

Thank you!  I really needed this.  Keep pushing yourself to maintain as much independence as possible.

Ann

Michael Ellenbogen

I totally agree and I do hate the part of reinventing the wheel all the time for things you keep doing over and over. Everything is a guess anymore.

 

jfkoc

Indepencence. So easily taken for granted can become  a constant thought frought with planning and organizationm.

jrnyon

Hello,  I recently moved to a new town to live with my daughter, son-in-law, and 2 young granddaughters. I had to resign from my new job as a case manager after 6 months due to cognitive issues, and have just been diagnosed with Alzheimer's disease. I am 64 years old, and not sure what to do from this point. I haven't met anyone except neighbors so I don't have social contacts yet, and not sure how to go about it now. I have difficulty with going out by myself but know I need to try....I would appreciate thoughts, ideas, etc. about what to try from here.  Thanks for input, Karen

Jo C.

Hello and a warm welcome, Karen.   You are on a Forum that does not get much traffic, if you go to the "Young Onset" Forum, more Members with dementia Post there.

Also, the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this assistance.  Consultants are highly educated Social Workers who specialize in dementia and also family dynamics.  They are very supportive, have much good information and can often help us with our problem solving and planning.

I send you best and warmest wishes, and hope to see you soon on the Young Onset Forum, you can start a new Thread to be more easily seen - just go to the box at the top that says, New Topic, put your topic in the small box and then do your writing in the larger box; that way you will be seen and get much more input.

With warmest of thoughts being sent your way,

J.

Iris L.

Welcome Karen.  It is extremely difficult for a person with cognitive impairment to know what to do, because no one tells us.  We have to figure it out by ourselves.  What we figure may change over time, anyway.  It is very important that thorough medical and neurological evaluations have been done, because there are many dementia mimics.

As I stated above, it is important for me to have a philosophy.  This keeps me focused and keeps me going.  I decided to take advantage of whatever could help me.  In my case, this started with the medications.  I am using Exelon patch and memantine (generic for Namenda).  They help my memory and my speech.  But note, I do not have Alzheimer's Disease, but cognitive impairment not otherwise specified.

You may be able to live with your daughter and her family for a long time.  But a time may come to make other arrangements.  Be prepared for this.  Gather your resources.  We can talk more about this, if you want.  Post here or on the Younger Onset board, as Jo C suggested.  It can be very useful to discus your plans with a Care Consultant, they are very wise.  Please keep posting.  There is help for you.

Iris

oehlsena

I provide caregiving for a loved one, and what I think about is what I would do if I start to develop Alzheimers. The kind of "philosophy" I give for myself is that I've learned so much while caregiving for my loved one. I've learned invaluable lessons. Caregiving for anyone, whether for babies, older adults, or the disabled, can be such a rewarding experience although I think it is the most challenging scenario to go through. I can't even explain all that I've learned from caregiving. Some of it is just intrinsic lessons. So, I can be glad for the opportunities that having Alzheimers provides my loved ones while also grieve that I would lose so much independence. I think that this perspective also helps me to stay grounded even when dealing with my loved one acting dangerously or unacceptably.  

Peace and love!

EllisA

hi everyone.  I have Alhzeimer's, MCI and am 70 so doing well.  diagnosed 3 years ago and am taking max,dose of Namenda and Aricept.  Short term memory is shot and doing things that once were simple is an extreme challenge.  As Michael said re-inventing the wheel everyday is tiresome and a bit frustrating.  I am glad this forum exists so I can read how others are doing, realizing most have similar experiences and challenges.  This journey is extremely challenging for me, something different each day.  Keep your Faith and keep looking UP.  He does hear our thoughts and prayers, even to family and friends don't understand.

Thank you for being here.  EllisA

EllisA

it sure would be nice to have other oatients, or there care providers to visit and comment here,  IT IS REALLY LONLEY

Iris L.

Hello, Ellis!  I'm glad you are doing well.  I just got over Covid, now I am back to my outside activities.  I visit with some friends once a month that's always a fun time.  Two days ago I went to a Hawaiian luau with some other friends.  Are you able to get out?

Iris

EllisA

Iris and others,

Yes I can still get out and about.  Airicept and Namenda seem to be keeping me static at least.  "not going down as fast as before them.  I still get around , much slower than before, still caring for my DW Wife's angora goats and chickens, her mobility is much more limited than mine.

The few friends I have had are still working and busy with their families.  Our grandchildren visit frequently.  That really helps me push on.  Our 7 year old grand daughter is my main booster.  She always sees the positive and brings joy into my life with every visit!

HAVE A FANTASTIC DAY   GOD BLESS ALL OF YOU!!!!!!!!!!!!!.EllisA

Iris L.

Thanks, Ellis!  Staying close to nature can be a great inspiration and motivation for us.  You have a nice family.  You focus on what you still can do, not on losses.  Good for you!

Iris

GothicGremlin

Hi everyone --

I only visit this forum sporadically - I spend almost all of my time in the general caregiving forum.  That's the place I go to get so much good advice as I care for my younger sister who has early onset Alzheimer's. She was 59 when she was diagnosed.

Looking through the posts here, and the discussion about preserving as much independence as possible, I immediately thought of this book I read.  It's "Somebody I Used to Know" by Wendy Mitchell.  She was also diagnosed with early onset, and she has refused to give up.  She has all kinds of workarounds for things she can't do anymore.  I don't know if she still does this, but she would get on the train from York to London (by herself) to give talks about Alzheimer's. She'd take photos of all of the stops, with notations on which stop to get off. Then when she got on the train, she'd look at the photos and know where she was. She also had photos of the train stations, the doors, the sidewalks, the street signs, pretty much everything that she'd need for a journey of that type. She still posts photos of life near York on Twitter

The book is really good, not depressing at all.  I learned so much from it, most importantly, some ways to interact with my sister and not inadvertently trample on her dignity or agency.  When I told my sister the title of the book, she said "that's exactly how it feels  - somebody I used to know." Her pre-Alzheimer's self, and her post-Alzheimer's self - skills she used to have, skills she has now, ways to move through her changed world.

Sorry that got kind of long, I just wanted to share that book with all of you.

Iris L.

Thanks for posting about that book, Gothic Gremlin.  In the beginning, I read a lot of books by patients, also blogs.  There don't seem to be any contemporary ones.  I learned the most from patients and caregiver members here.  

It's good that Wendy can find people who are interested in her talks about her dementia journey.  No one I know is interested in what I am dealing with.

I am the same person as before.  But my world has shrunk.  I live in a bubble.  People I used to be friendly with don't understand that I am the same person, but slower.  I cannot tolerate noise or commotion.  I still have my sense of humor.  But, like I said above, I am not going to burden anyone.  I'd rather be alone that put up with being abused.

Iris

BadMoonRising

Thanks, GG. I located the book at my local library and will pick it up this week. The question remains whether I will have the right frame of mind to read it. BTW, I've used the camera on my phone for years to record the location of my car, entrance to a mall (from the outside and the inside) every turn when walking through an airport, etc. Best thing since sliced bread.