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All. The. Emotions.
MissingHer
Posted: Wednesday, June 27, 2018 10:02 PM
Joined: 5/4/2018
Posts: 5


Goodness.  This got long. 

TL;DR: EOAD is scary.  And tonight I'm feeling sad.  And all the other emotions, too.  

The longer version?  Here you go....  If anyone has any advice - or is going through anything similar - I would greatly appreciate a message or response.  And even if not, thank you for reading and thank you for letting me talk! 

My mom is 62 years old and she has (undiagnosed) EOAD.  10 years ago she went through a phase where she was very depressed and wouldn't get out of bed.  Then she got some antidepressants and was a bit better.  She would talk about memory problems and confusion, but the talks never really went anywhere.  She'd been tested for AD and they said she didn't have it.  Which was great!  But they also told her she was "fine", and she wasn't.  Five years ago the anxiety attacks started.  She was very confused.  She knew she was confused.  She was tested again and her results were "unclear but not indicative of AD".  It was great that she didn't have AD, but there were still no answers.  Things have gotten steadily worse.  She doesn't know who I am.  We used to be so close and now she doesn't recognize me as her own daughter.  She wakes up each morning next to my dad and doesn't know who he is.  Some nights she refuses to go to bed with "this strange man" in her house.  She went through some dizzy phases (maybe the CBD? or the aricept?).  She went through a few phases of pretty intense depression.  Now she just vacillates between confused, panicked, and complacent.   Doctors still say there's nothing wrong.  MRIs show brain shrinkage "consistent with aging".  My mom tries to eat inedible items (quarters, most recently), can't use the bathroom by herself, doesn't recognize her immediate family, and gets lost in her own house.  But she doesn't have a diagnosis. 

I am frustrated.  I don't understand what's happening with her.

I am sad.  We used to be so close.  We talked daily.  About everything.  And now she doesn't know who I am.

I'm angry.  Why can't they diagnose her?  Why can't they help her?  What if we'd gotten a diagnosis and medication had helped? 

I'm scared.  Her mom had this (diagnosed as Alzheimer's at the autopsy).  Her aunt had this.  One of her brothers has this.  Am I next?

I'm sad.  She would have loved being a grandma, but now she doesn't know who my kids are.  Seeing my kids is usually a cause for her to become angry - she yells at my dad because he never let her have kids (ME!  SHE HAD ME!). 

I'm scared.  She wants my kids.  She's asked me if she can have one.  When I say no, she gets mad. 

I'm confused.  What does the future look like?  Physically she's in really great shape.  She can hike, run, or walk for hours.  She'd get horribly lost on her own, but aside from that, she'd be fine. 

I'm scared.  How long will she live like this?  What will it do to my dad?  He's her sole caregiver (I live thousands of miles away).  They come to visit and I try to help, but it's hard with two little kids.  My dad is incredibly resistant to outside help.  I think he sees it as a failure - that he can't take care of his own wife.  He's doing well taking care of her now, but it's taking a toll.  She wakes at all hours so he doesn't get much sleep.  He can't leave her alone at any time or she gets herself into trouble.  She yells at him.  She's resistant to help with bathroom issues, but can't handle them on her own. 

I feel guilty.  Six (?) years ago she talked a lot about suicide because she thought it would be easier on all of us to not have to take care of her.  At the time, she was pretty functional and the suicide talk was just annoying.  She would bring it up all the time.  And not remember she'd just discussed it.  And bring it up again.  You can only have the same emotionally draining conversation so many times in one day before you get dismissive.  Now, I understand what she was getting at.  And I feel so badly that I wasn't more patient.

I'm mad.  My dad is essentially on house arrest.  He can't do anything because she can't be alone.  And my mom gets mad at him for things that aren't logical.  Mad they never had kids (THEY DID!), mad they didn't have dinner (THEY DID!), mad he won't go on a walk with her (THEY JUST WALKED FOR TWO HOURS STRAIGHT!).  She had an anxiety attack during my son's school event.  They missed the whole thing.  It was disruptive.  And disappointing.  And not her fault.  I know that.  On most levels, I know that....

I feel guilty.  She deserves more sympathy.  Sure, this is hard on us, but what is it like for her?  She's not doing this on purpose.  Why can't I remember that at all times?

I'm tired.  The fear of being next and the efforts to support my dad and the sadness of what's happening are constantly in my mind.  I can't even imagine what it's like for my dad.

I'm so scared.  I don't want this to happen to my mom.  And I don't want this to be my future too.  Is this what my life will look like in 25 years?  Or less?  Terrifying.

I'm confused.  Seriously, what happens next?  I know I already said this, but the way things are going right now isn't sustainable.  Which is scary.

But overall, I'm sad.  I miss her so much.


jfkoc
Posted: Thursday, June 28, 2018 9:12 AM
Joined: 12/4/2011
Posts: 17548


You will likely get more answers by posting this on one of the caregivers forums. That said would you take a look back at to exactly how your mother's diagnosis was made? Was the correct protocol completed? Who did the testing?
Michael Ellenbogen
Posted: Thursday, June 28, 2018 12:20 PM
Joined: 11/30/2011
Posts: 2668


What city and state does your mother live in? Does she have insurance? 


MissHer
Posted: Thursday, June 28, 2018 4:48 PM
Joined: 11/13/2014
Posts: 2186


Hi My mom has alz as did her aunt and mother. They were elderly though. In their 80s. I think that all of us children of a family member go through the same thoughts and fears. It is very heartbreaking and frustrating. Why don't you post this on the caregiver boards. 

Michael. Did your mom have younger onset? 


Michael Ellenbogen
Posted: Thursday, June 28, 2018 8:08 PM
Joined: 11/30/2011
Posts: 2668


No, but she did get some type of dementia in the las 5-6 years. It was not diagnosed do to her age. She got it way after I had some type of dementia. 


MissHer
Posted: Thursday, June 28, 2018 10:06 PM
Joined: 11/13/2014
Posts: 2186


Oh Okay, Thanks Michael. Hope all is well with you.

Deb


Mimi S.
Posted: Friday, June 29, 2018 8:09 AM
Joined: 11/29/2011
Posts: 7035


Hi Missingher,

Welcome to our world. I'm so glad you found us.

 

It's been a long journey and I assume you have read a lit about the disease.
From your library ask for any book by Naomi Feil with the word Validation in the title. It's not an easy read. On-line is not sufficient. Time spent will be worthwhile. You will need to demonstrate to dad and any other caregivers how to use it.

 

Much of wht you write is the normal progression of the disease.

 

Any Adult Day Care available?  Dad needs respite.  Do hire caregivers.
Re testing. Did she have a several hour long neuro-psych test? AD is only one type f dementia. 
There are several types and some have sub-types of dementia.  It is not uncommon to have more than one type. 
Do stay with us.

alz+
Posted: Friday, June 29, 2018 9:27 AM
Joined: 9/12/2013
Posts: 3549


you said she was on aricept - that is for ALZ.

I am not longer able to tell you how to make her more comfortable but since everyone of us is different and has a unique experience with dementia maybe the universal things would help.

do not argue with her.

stop saying NO and That isn't true

Give her something to do, she seems to  like kids, you turned out fabulous so maybe a life like baby doll? her own bedroom?

*****

If ever a time to try real cbd oil to calm her, ask a dispensary for calming cbd oil for dementia and maybe try that. could be life changing for everyone.


MissingHer
Posted: Saturday, June 30, 2018 1:26 AM
Joined: 5/4/2018
Posts: 5


jfkoc - I'm so sorry!  I didn't realize I was posting in the wrong place.  That's what I get for emotional posting, I suppose.  I will be more careful next time.  I just saw "Younger-Onset" and went for it.  Apologies!

Michael - she lives in Anchorage, Alaska.  She does have insurance (two types!) and has had extensive testing done with several neurologists and neuropsychologists up there over the past 10 years.  She's had a number of diagnoses, but none that seemed "right" and none that other doctors would confirm. 

MissHer - I'm on my way to the Caregiver boards now.  Thank you! 

Mimi - I will look for those resources.  And yes, I think a professional caregiver is the next step.  My dad needs respite, you are correct.

alz+ - Excellent suggestions.  Honestly, I appreciate them.  I do try to avoid saying "no" or correcting her when it's not necessary.  It's good to hear it from you to have it reinforced. 


Michael Ellenbogen
Posted: Saturday, June 30, 2018 7:47 AM
Joined: 11/30/2011
Posts: 2668


No need to apologize for posting here.  Going away for the weekend but will do some research next week and get back to you. That is one area I have no knowledge of.  It is a great place as I have been there. 


MissingHer
Posted: Saturday, June 30, 2018 11:15 AM
Joined: 5/4/2018
Posts: 5


Thank you, Michael! I hope you have a great weekend away!
Michael Ellenbogen
Posted: Wednesday, July 4, 2018 4:05 PM
Joined: 11/30/2011
Posts: 2668


This is the email I received a few hours ago. Not quite the type of doctor I was hoping for but this is what was recommended to me by someone who taught the folks in that area.

 

Hi Michael,

 

I apologize for the delay in getting back to you. I would suggest Dr. Erika Coady who is a neuropsychologist at Providence Hospital. She is really wonderful. I don’t have her current information but if you call Providence in Anchorage, I’m sure you can reach her.

 

Blessings and Happy 4th of July.

Jocelyn Shealy McGee, Ph.D., M.S.G


jfkoc
Posted: Wednesday, July 4, 2018 9:10 PM
Joined: 12/4/2011
Posts: 17548


missing her...not the wrong board...we all post back and forth. I just thought you would get more replies on one of the other boards.
Michael Ellenbogen
Posted: Thursday, July 5, 2018 5:42 AM
Joined: 11/30/2011
Posts: 2668


 Another response.

 

Michael,

I just forwarded your message to a couple of people who might know of current services for people living with dementia and their families in Alaska. I have not lived in Anchorage since 2015 and am not sure of what’s going on there currently. Please accept my apologies for the slow response earlier. I’m in the process of moving and have not been checking emails regularly. It looks like a very difficult circumstance that this family is facing. Hopefully my colleagues will get back to me soon with some guidance that I can pass on to you.

Happy 4th. Blessings to you and yours.

Jocelyn 


Michael Ellenbogen
Posted: Monday, July 9, 2018 1:15 PM
Joined: 11/30/2011
Posts: 2668


 This was just sent to me. If you can travel I would recommend going out of your area as I did not get a good feeling there is anyone really good in that area. Sorry

  From: "Coady, Erica L"
 

If you this individual is concerned they have dementia, I would suggest they speak with their primary care dr about a referral for a neuropsych eval to dx it.  As you know, not all memory problems are dementia, so it’s nice to have an accurate dx so that appropriate treatment can be recommended.  If they individual has a dr in town, they can make the referral.  Really the only well-trained neuropsychologists in Anchorage that I’m aware of are the two of us here at Providence, and Paul Craig, who is in private practice.  Paul’s number is 247-8200.  Last I heard he does not take Medicare or Medicaid, so we usually end up seeing many of those folks.  The Providence clinic number is 212-2673 (front desk).  If there isn’t a PCP working with the patient, they can contact us to try to get help with a referral (which we usually suggest at it helps with insurance coverage for the evaluation). There is also a new neuropsychologist in private practice out in Wasilla that I don’t know well, but I think he’s got good training.   

 

If the individual already has a dx, their PCP should be able to recommend some resources in the community.  There aren’t many, but probably their family dr is a good place to start. 

 


Mimi S.
Posted: Tuesday, July 10, 2018 10:13 AM
Joined: 11/29/2011
Posts: 7035


i woildsuggest getting a copy of te latest book by doraiswamy and Gwyther. it describes testing that is required for a good diagnosis. 

You have been to several neurologists but did she get the several hour long neuro-psych test. As the disease progresses, that test becomes less valuable since the patient cannot answer the questions.

And if you have to travel for a good diagnosis, so be it. Currently, if they do a PET glucose scan and find no amyloid in the brain, they will not diagnoses AD. My personal feeling is that the presence of tat amyloid and tau is just one factor and leads to a specific type. I firmly believe that hose without the amyloid have some type of dementia, perhaps a yet to be defined sub type of AD.

Another question I'd like an answer to: do those with amyloid progress faster than those without?  i suspect there has to be a reason for the huge difference in speed of progression other tha pre happenchance.


Michael Ellenbogen
Posted: Tuesday, July 10, 2018 11:21 AM
Joined: 11/30/2011
Posts: 2668


One more RX.

One more thought, Jocelyn, you could also pass on information for a neurologist, as that’s often a good referral for these folks as well.  I like the folks at Peak Neuology, 331-3640, and Mary Margaret Hillstrand, ANP, 263-2200. 

 

 

Kind regards,

Erica
MrsATeaches5th
Posted: Tuesday, July 17, 2018 3:18 PM
Joined: 7/17/2018
Posts: 2


I just want to say I hear you and I sympothize, truly. I’m so sorry you’re going through this. I don’t have answers, but I connect with your statement of being mad. That anger is very real...but I feel like the anger protects my heart from the sadness.
alz+
Posted: Tuesday, July 17, 2018 3:34 PM
Joined: 9/12/2013
Posts: 3549


there is a difference between not knowing you are her daughter and her not being able to connect you to that relationship category.

I am not very cogent but let me share this, if it helps - when my Dad had ALZ and I helped with his care I saw him several times a week, he would ask if I "knew his wife?" At first I said, "She is my Mom!" but then I figured out he was speaking in poetry.

He comforted me at a family gathering when I broke down in tears. My Mother asked "what is wrong with her?" and my Dad said, "Some kids on the play ground weren't very nice to her."

Did he mean he thought I was on a playground with mean kids? No, he shared in poetic words the exact feeling I had.

When he could not speak (after surgery/anesthetic for broken hip) we communicated with our eyes and touch. I never felt so close to my Dad.

I have heard many people talk about how people with ALZ forget family etc, I witnessed my brother and sister avoid talking to my Dad and even saying how he was "so out of it" etc.  It is my experience that being unable to name things as we used to means little to what our reality is. Another issue is how slowly we process information and how quickly most people move on before we can catch up!

behave as if your loved one loves you back, things may change dramatically. I hope so.  


Bear2
Posted: Sunday, August 5, 2018 12:34 AM
Joined: 8/10/2017
Posts: 10


I am sorry for your family. I have Younger-Onset. I was Diagnosis a year ago. I have a great husband and some friends. I also have 2 daughter. I was ok for a bit but know I am sad. I don't like to be by myself. My mother died at 63 and her sister about the year after. I know things are hard but new ideas are coming around.
Mimi S.
Posted: Sunday, August 5, 2018 7:51 AM
Joined: 11/29/2011
Posts: 7035


Welcome to our world Bear. I'm so glad you found us.

While you were being tested at Stanford did anyone suggest testing for the familial Alz. gene?

 help line: 1-800-272-3900 for the local #. Do call during normal business hours and make sure you are speaking to the local. National picks up if the phone is not answered within a certain # of rings.
Bear2
Posted: Sunday, August 5, 2018 3:35 PM
Joined: 8/10/2017
Posts: 10


I have not been told of any tests or results regarding eFAD (APP, PS-1 nor PS-2).  I got results from another test indicating that I am ApoE3 / ApoE4.
Mimi S.
Posted: Sunday, August 5, 2018 5:47 PM
Joined: 11/29/2011
Posts: 7035


Bear, You are referring to Early Onset Familial Disease. This means that there is a gene you carry that causes many who also have the gene to have early symptoms. not all who have the gene get the disease.

Therefore as reading a previous post of mine or several from Michael indicate, you must have a neuro-psych from a well qualified source.  Too many other things can also have dementia symptoms. Some of these are easily fixable and some are not.


llee08032
Posted: Monday, August 6, 2018 7:37 AM
Joined: 5/20/2014
Posts: 4406


Welcome to the board Bear.