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working with two geriatric psychologists--I don't know how much more I can take!
Iris L.
Posted: Thursday, May 24, 2012 1:29 AM
Joined: 12/15/2011
Posts: 16192


I worked with one geriatric psychologist for a year and a half, and the other for alfmost half a year.  They both want to reassure me that they don't tink I lok like an Alzheimer's patient.  What does an Alzheimer's patient look like?  "People with Alzheimer's don't know they have Alzheimers."  We all know that's not true.

All of my "psychological" problems stem from my cognitive impairments and memory loss.  Why is it so hard for me to find a professional who can understand that?  That I'm not "choosing to forget."  I'm not "malingering."

I feel like I'm getting to my breaking point, but because of other people, not because of myself.

Iris L.

eaglemom
Posted: Thursday, May 24, 2012 8:40 AM
Joined: 3/7/2012
Posts: 2378


Oh Iris I'm sorry for your distress - all of which it totally understandable.  This is the where the medical field is totally lacking, IMO. 

 

 My DH is the same way - we've been told to "enjoy life until we have a firm diagonosis."  That's all well and good however its equally frustrating.  I know I've felt like I'm just waiting for some change then "we"ll know for sure."  Then Iquickly realized I don't do well like that. I changed my thinking to "he's doing well, we are active, friends are fantastic & if this is as good as it gets that's great" type of thinking.

 

I'm wondering if a little depression might be slipping in for you.  Which is understandable.  Maybe discuss that with you PCP?  Then even though it all stinks its easier to deal with on a daily basis.  Just a thought.  eagle


Iris L.
Posted: Thursday, May 24, 2012 12:45 PM
Joined: 12/15/2011
Posts: 16192


eaglemom wrote:

I'm wondering if a little depression might be slipping in for you. 

    

Thank you for responding and for your perspective, eagle.  I've been dealing with the diagnosis of depression along with the diagnosis of cognitive impairment.  But after years of "psychotherapy",I'm coming on my own to the conclusion that the depression is only because of the cognitive impairment.

I consulted them for  help with dealing with my new reality of failing faculties and worsening inabilities in the future and all that that entails.  But what I get from the professionals is denial.  It seems like they don't understand anything about early stage dementia.  But instead of acknowledging their ignorance, they try to convince me that what is happening to me is not happening to me.  This is maddening!

I'm working with doctoral level geriatric professionals.  We are always advised to seek out professionals who work with the geriatric population, because they are more familiar with issues that affect older adults.  But the psychologists I'm working with seem to be clueless about such an important and common issue.

 

I feel like I'm grasping at straws!  I'm less depressed but more frustrated, and getting to the point of being angry.

Iris L.


Myriam
Posted: Thursday, May 24, 2012 12:52 PM
Joined: 12/6/2011
Posts: 3326


Iris, I don't know what to say other than to offer my support and empathy for what you're going through. Perhaps you should consider thinking about finding the right therapist for you like finding a great pair of shoes. Keep trying them on until you find the that fits perfectly.
Iris L.
Posted: Thursday, May 24, 2012 1:10 PM
Joined: 12/15/2011
Posts: 16192


Thank you for your support, Myriam.  I don't know where else to turn.

At my last visit the conclusion was to treat me like an adult attention deficit patient because of my impaired executive functions.  But I'm not an adult ADD patient.

Iris L.

jfkoc
Posted: Thursday, May 24, 2012 1:39 PM
Joined: 12/4/2011
Posts: 17548


We got a call from Mayo/Rochester after a year wait so I went back on line to refresh my memory on their AD dept.

 

I look up EAOD and found it interesting especially the need they say for accurate diagnosis and the small % of people who have EAOD.

 

If you have not already checked out their site you may find something of interest.

 

I understand the absolute frustration with getting the correct care. Please do not give up trying for the fit!!!


nomemo
Posted: Thursday, May 24, 2012 3:58 PM
Joined: 3/21/2012
Posts: 439


iris, i, too, have to add, please don't give up finding what's right for you.  i can tell by your writings that your frustration level is "through the roof", and, well it should be.  please don't give up, don't give in.  i'm cheering for you.....we all are.
RebeccaJ
Posted: Friday, May 25, 2012 9:05 AM
Joined: 4/19/2012
Posts: 83


Iris L,

My PCP doesn't get it either. I have a terrible time socializing and he wants to treat me for ADD (not hyperactive) and anxiety. I try to refer him to my neuropsych testing and he just loks at me bewildered...for sure he hasn't read my results. I have severely slow processing time and that is why socializing is so hard. Too much info at once.

I wonder if what we want is really what we need. Do we need a diagnosis to be happy? Aren't the best medicines alternative, not from a pharmacy? Isn't the truth about what we need in our instinct?

I obviously have given up on doctors and do what I KNOW I NEED. I never put myself in harm's way, yet do everything possible. Today is the best day. I don't want to spend it frustrated by doctors and worry.

I smile is contagious and here is one for you

Rebecca


dayn2nite
Posted: Friday, May 25, 2012 9:06 AM
Joined: 12/18/2011
Posts: 3097


I'm trying to figure out exactly what the goal is with the psychologists.  I'm not saying it's useless, but basically the only thing they can help you with is coping skills--on a basic level you do have to accept that this is the way it is and it is extremely likely it will get worse.  There is definitely depression that comes along with that, so that of course needs to be treated, but if you are looking for treatment to help improve your cognitive skills--I'm not sure if that's possible.

 

They could also help you formulate your future--what you would like in terms of future care, facilities, etc.  If you have plans in place, this may alleviate any worry you might be feeling underneath everything as far as what will become of you (since there is no family caregiver involved).  You actually have a better situation that someone with a family caregiver involved because you are master of your own ship and can make your wishes known (and written).  You won't have to just go along with what a family member decides for you.  Mimi has written about choosing her own facility for a future time when it's necessary and I think there is a certain peace that comes from knowing what's going to happen later on, since it's also extremely likely you will need assistance in the future.

 

Try not to get stuck on what your condition is called--it doesn't really matter.  You just need to maximize the skills you do have and try to compensate for the ones you are losing.


nomemo
Posted: Friday, May 25, 2012 9:22 AM
Joined: 3/21/2012
Posts: 439


i agree with dayn1nite - there is a certain peace with making those "final plans", especially knowing that they were made at a time when you're in control and are the decision maker.  seeing a psychologist or therapist has helped me, though.  i need the coping skills to help me through the desert times.  i also need the 2x/month cognitive therapy.  i know the cognitive skills won't improve, but the therapy does help to stabilize somewhat.  also, my speech therapist is really good about giving me strategies for home.

 

i've re-read some of your posts to others and you've been such a cheerleader, inspiration and wonderful resource for information.  thanks so much. and keep it up, please!!


Iris L.
Posted: Saturday, May 26, 2012 11:44 AM
Joined: 12/15/2011
Posts: 16192


I actually had a good session with the psychologist yesterday.  I originally sought psychologic consultation in order to help me communicate better with a primary care physician.  I have had six PCPs since I began seeing the neurologist and began Exelon patch three years ago.  I can't work with a PCP who tells me that I am "choosing to forget." In our session I talked about how cognitive impairment impacts my life, and what I want to convey to the PCP.  The psychologist said she could help me in this area.  

Also, I'm trying to delineate how much of my impairments are due to depression and how much to a degenerative brain disease.  I realize there is a degree of overlap.  But I need someone to help me figure this out. I think I am finally getting through to her.  She is open to helping me in whatever way I need. 

I'm always advising patients to treat their depression, and I thought I should take my own advice, and work on this depression more.

Why is it so hard to find good professional care? 

Unlike many patients, I have no parents, spouse or partner, or children.  My close relatives are elderly (in their upper 80s) and I don't want to worry them.  My brother is busy with his life and he lives across the country.  My two closest friends have turned their backs on me after my memory got worse.  I have no one to discuss serious issues about my life with.  I need to be able to talk with a professional who understands what I'm talking about.  Communicating over the message boards and in the chat room is invaluable, but I also need a live person to talk with.

Iris L.

Geegee
Posted: Monday, May 28, 2012 10:08 AM
Joined: 11/29/2011
Posts: 514


Iris, I have been reading your thread with much interest and empathy.  I'm so sorry for the struggles that you have been having with the geriatric psychologists understanding your particular problems. 


 Maybe you could ask them what their goal is for your treatment; or,  What do they wish for you to be able to accomplish; or, etc. from your point of view.


Your recent post asked, "Why is it so hard to find good professionals?"  Your question is importance and some of us have asked itas well.  this must be harder for you since you have been on that other side of that fence.  You know what their qualifications should be.  


In your last post, you decided to take the advice of one of our board's best cheerleaders for addressing depression in a patient's life.   YOU, Iris!   I'm hoping you will really listen to some of the excellent advice you have offer others regarding their depression.


I'm encouraged that you feel you can work with your current psychologist.  If not, do as Myriam suggests, find a better fit.  In my head, my approach to any new doctor is as if they are interviewing for employment or the position of my care.  There is certain criteria that they need to meet.


You have endurance, Iris.  You are still here!!...and we are soooooo glad!  Those of us who remember when you were gone before, feel blessed that you returned.  That proves you are a fighter.  


So, here's a (((((((hug)))))))  for the day.  Just one day at a time.  



Lisa428
Posted: Wednesday, May 30, 2012 4:39 PM
Joined: 12/5/2011
Posts: 795


Dear Iris,

 

The medical profession lacks doctors who are trained to evaluate and treat people with memory impairments.  It lacks people who care.  This is so unfortunate for all of us.

 

Iris, you are truly wise.  Take your own advice.  It's good to hear that you have a better relationship with your PCP.  I, too, have problems making myself clear to physicians and other people.  My therapist helped me with my communication skills too.

 

Please, hang in there.  You are a fighter and a leader.

 

Thinking of you.

 

Peace and Hope,

Lisa


Iris L.
Posted: Wednesday, May 30, 2012 8:30 PM
Joined: 12/15/2011
Posts: 16192


Thanks for your support, Geegee and Lisa.  I'm so glad this board is here and that you are all so knowledgeable and positive.  We have to help each other.

Iris L.

elvisgirl01
Posted: Thursday, May 31, 2012 5:23 AM
Joined: 5/7/2012
Posts: 97


I add my sentiments to what another poster said, Iris.  Look back on the advice you have given others and look at the way you are discussing what is going on with you.  You are an expert on what is happening with you.  Don't give up until you find the right doctor or doctors that will be the right "fit" for you.

 

Have you tried outlining and summarizing on a piece of paper what is going on with you?.  Put it all down in medical  terms so they can understand. Remember that the first two sentences will be the most important, so put down the most urgent need you have first.  Doctors are supposed to be good listeners,  but that is not always the case.  A lot of time can be saved for both you and the doctor if you have that piece of paper to give them. In fact, carry two copies, one for them, and one for you to refer to. This will focus the conversation, and perhaps the doctor, by reading what you have written and by discussion, will be able to better understand your situation.

 

The medical docs for you are out there, and you have to keep plugging on until you find them. I hear that you are frustrated and at the end of your rope.  I hope you soon find the help you need.

 

I am sorry for the discouragement and frustration you are experiencing . I have no idea of the pain  you are feeling right now and hope it will end soon.  Do not forget that you have the skills you need to find what you are looking for.  Frustration and depression are driving your engine right now and it is hard for you to see past that right now, but you are TOUGH, and you can get through this.

 

Hang in there.  


elvisgirl01
Posted: Monday, June 18, 2012 3:31 AM
Joined: 5/7/2012
Posts: 97


I say amen to the thought that as a whole, the medical profession does not care.  These days it's all about the almighty dollar.  But, guess what Iris, you are brave enough and strong enough to get all the answers you need.  The answers may not be there quick enough for you, but nevertheless, keep on plugging away and you will find the answers you are seeking. No matter your age, "you are a tough old bird." Now, run with it.
sg/OT
Posted: Tuesday, June 19, 2012 11:51 AM
Joined: 6/19/2012
Posts: 1


Hello Iris & all,

My heart just aches reading all of these posts and replies.  I truly believe that a good Occupational Therapist could help you with your concerns.  Their job is to recognize your strengths and help build on those in order to compensate for the things that are going wrong.  This can be done in many ways but the emphasis is on practical strategies to help you stay safely engaged in activity, and in your life interests.  OT is covered by some health insurance for some evaluations and initial treatments, and some ongoing treatments as long as there is progress toward a defined goal.   Ask your local ALZ. Association for a list of physicians in your area that will refer you to an OT specializing in Cognitive Care.  If the OT you get referred to can't help you, find another, perhaps through a local assisted living facility.  Good luck.  Sharon


Iris L.
Posted: Tuesday, June 19, 2012 3:34 PM
Joined: 12/15/2011
Posts: 16192


Welcome to the message boards, Sharon.  Thank you for the information about OT.  

Please feel free to begin your own thread and tell us more about yourself.

Iris L.

SteveSanJose
Posted: Tuesday, June 19, 2012 7:01 PM
Joined: 1/3/2012
Posts: 189


I also work with a psychiatrist, but only one.  For me for doing more one would confuse me.  Too many points of view.  I also have joined a lot of peer groups, but they are different than seeing a psychologist or psychiatrist.  What it sounds like to me what you're psychologist is trying to do is to make you think more positive.  Not to say that you don't have dementia or Alzheimer's, but to think of it, to yourself, as a positive; not negative.  Dealing with any disability is a state of mind. The doctor has spoken LOL  Doctor
nomemo
Posted: Tuesday, June 19, 2012 10:26 PM
Joined: 3/21/2012
Posts: 439


hahaha "Dr. SteveSanJose"!!  the dr. is in!!  LOL!!!
Iris L.
Posted: Wednesday, June 20, 2012 12:41 AM
Joined: 12/15/2011
Posts: 16192


Steve, what I have discovered since working with this psychologist is that I have been misdiagnosed for twenty-four years.  My original diagnoses were adjustment disorder and atypical depression and anxiety. 

My diagnosis in 1987 should have been major depressive disorder with psychosis, because I was dealing with hallucinations and hearing voices. 

This diagnosis also includes cognitive impairment.  I need to know how much cognitive impairment, is it progressive, and what to do about it.

This cognitive impairment is not the same as pseudo-dementia, from what I can make out from reading on the internet.

I'm looking for someone who can give me ANSWERS!

i have an appt with one of the medical group's psychiatrists next week.  The other one I consulted one and a half years ago did nothing for me and told me nothing.  He didn't even make this diagnosis.

Iris L.