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I feel bad about not being strong anymore
Iris L.
Posted: Saturday, March 17, 2012 4:22 PM
Joined: 12/15/2011
Posts: 16240


I used to be emotionally strong and could handle a great deal of strife.  I helped and supported other people. Nothing bothered me.   

 

Now I feel weak. I feel vulnerable.  I feel like I can't cope with the slings and arrows that come my way.  I want to hide.   

 

I don't like feeling like this.   

 

Iris L. 


SteveSanJose
Posted: Saturday, March 17, 2012 4:34 PM
Joined: 1/3/2012
Posts: 189


 Do you take a antidepressant, or a antipsychotic medicine? I take both, and I get less of the feelings now; that you are describing. I used to have those problems to. Just hang in there and drink some green beer.

 

St. Patty's Clover Car


Lisa428
Posted: Saturday, March 17, 2012 4:38 PM
Joined: 12/5/2011
Posts: 795


Hey Iris,

 

I'm so sorry you are feeling down.  I do know how you feel.  I used to be the GO-TO person in my family and on the job.  Ask Lisa, she can figure out how to make it better!  It's been since I was young.  The group of people I hung around with used to call me Dr. Lisa.  I was their shrink!  I was my family and friend's shrink.

 

Later, when I became an RN, it was even more severe.  I was called for everything!

 

Now, having suffered with EOAD for over 4 years, I just can't do it anymore.  It makes me sad.  It makes me feel less than.  Do you know what I mean?

 

Now, I'm the dependent one.  It really sucks!  I am trying very hard to accept where and who I am now.  My therapist and I are working hard  on the acceptance.

 

Hang in there, Iris.  You are still strong.  We all have hills and valleys.  Remember my blog "Thoughts from the roller coaster?"  Just hang on tight!!

 

Thinking of you.

 

Peace and Hope,

Lisa

 

 

 

 


LeeH
Posted: Saturday, March 17, 2012 5:29 PM
Joined: 2/6/2012
Posts: 48


Iris, you have always been a source of encouragement to others on this board, but it sounds like you need some cheering up for yourself! Just think of how many have expressed their sincere respect and caring for you and you will realize that any slings and arrows that come your way can be deflected by the shield of the love of others, and faith in yourself.  


Perhaps you need to have your antidepressants changed? Are you taking any? It is the pits to have to rely on medications, but most times depression is due to chemical imbalances in the brain, and you are especially vulnerable with your condition. 
 


 I hope you keep posting on the board so you can get the support and encouragement you need, just as you so generously give of yourself to others.

    
 (((((Iris)))))

    
 


jfkoc
Posted: Saturday, March 17, 2012 6:16 PM
Joined: 12/4/2011
Posts: 17701


Iris...you help me everyday. Just wanted you to know.
John891
Posted: Sunday, March 18, 2012 9:31 AM

I know how it is to feel down living with lifelong depression.  Sometimes I think I will overcome it but I can't.  There are times during the day that I feel really good, but certain events in my life can't always let me.  Iris, I believe you have said before that you live alone?  If you can try to reach to some family or maybe join a group of some sort (hobbies, support group), etc.   Personally, I have seen the indifference from my close family lately and I know what it feels like.  They don't want to talk much to me anymore and to expect them to understand me is placing unreasonable expectations on them.  They don't seem to understand or even care.  Many people are like that unfortunately.    The good thing you got this online support group that  understand your depression.   


Due to the indifference I've been seeing with my family, I reached out to an estranged sibling yesterday and was received well.  I had to do some research do find her.  Well my depression is still bad.  It's hard to reach out to someone who rejected me since birth.  I made this "super-human" effort because I need to be close to other people who will help me.  

If you can try to find some social interaction.  Remember you've helped me in the past and that's why I totally understand your daily struggle with depression.  Also, what uplifts me is to center on things that do not revolve around my depression or other health issues.  Just simply talking to  people about anything can give hope.  But I understand this disease of depression and AD (since my mom has it) so well that sometimes talking to people will make you feel worse.  Just know, I repeat again, there are people here who will be supportive and encouraging with you.

Take care

John


Iris L.
Posted: Monday, March 19, 2012 12:28 PM
Joined: 12/15/2011
Posts: 16240


To Steve, Lisa, Lee, jfkoc, and John, thank you all for your warm words of encouragement.  I don't have lifelong depression so I am not used to these down feelings.  They seem to come like a blast out of nowhere, but I know they build up over time. 

 

How can I get off this emotional roller coaster?  I don't like it. 

 

In any case, it's good for me to have people who understand and who will hold me up until I can get my bearings again.  Thanks again for the support and the hugs.  I appreciate you all very much!

 

Iris L. 


Lisa428
Posted: Monday, March 19, 2012 1:46 PM
Joined: 12/5/2011
Posts: 795


Iris,

we are glad to give a helping hand.  Perhaps you need some additional socialization or perhaps your meds need tweaking?

You are always supporting everyone on these boards!!!

Please, be good to yourself.  Get some good rest.  You deserve it!

Thinking of you,

Peace and Hope,

Lisa


nomemo
Posted: Wednesday, March 21, 2012 3:55 PM
Joined: 3/21/2012
Posts: 439


hello - i'm new to this group, so please bear with me.  i know how you're feeling; i've had those feelings, too.  i live alone, no children.....i'm an only child in a family of 12 kids!  know what i mean?!~  so i've had to be strong to survive.  however, since my diagnosis in 2007 with frontotemporal dementia, i've felt that i've been hit with one blow after another and just couldn't take it anymore.  but since i started with counseling about a year and a half ago to help my acceptance and management, i've been given some coping skills that really help me.  also, i understand better that a lot of what i'm feeling is part of my brain changes.  i laugh and cry uncontrollably at times, but my psychiatrist and neurologists tell me that it's "pseudobulbar affect"...effecting those with dementia, traumatic brain injury, stroke, etc.  i'm not suggesting that all of my times of feeling low are due to that, but what i have learned is that it's very ok to say "this really sucks!!!"  AND MEAN IT!!!!  if only to my four walls!  i'm also on paxil and depakote er to help, and they do.  i can't believe that before this all started i only took ibuprofen for a headache!  anyhow, i'll be thinking of you.....i'm so glad that there's a forum where i can find support from those who know.  sometimes i tell my friends "you just don't know what's inside my head!  or what's not!"  hang in there!  you're not alone!
Myriam
Posted: Wednesday, March 21, 2012 6:16 PM
Joined: 12/6/2011
Posts: 3326


Hi, nomemo! Welcome to this board. I live alone, too. I believe the Alzheimer's Association is focusing this year on AD persons who are living alone. Hope to hear more from them about the different issues they find and the solutions on how to deal with them.
Iris L.
Posted: Wednesday, March 21, 2012 11:03 PM
Joined: 12/15/2011
Posts: 16240


Welcome to the message boards, nomemo.  We're glad you found us although we're not happy with the reason why.  Please feel free to ask questions and to share your feelings and opinions.  We do understand. 

 

Iris L. 


nomemo
Posted: Sunday, March 25, 2012 10:02 PM
Joined: 3/21/2012
Posts: 439


thanks for welcome.  went to neurologist on friday for 6 month check up.  not outcome i was looking for;have to go for another brain mri because of suspected brain changes.  i'm stumbling and falling more so now have to use cane; periods of incontinence; tremors on arms and hands when i hold plates, pens/.pencils, etc., hallucinations and other things people tell me i do but don't remember.  time also now to call hospice for re-evaluiation to get aide and nurse in because i live alone.  i've been digging my heels in about that but dr., counselor and speech therapist are pretty adamant now.  was also asked once again are my final arrangements in place now, when i can be part of decision. although i am a person of deep faith, i'm scared.
Myriam
Posted: Sunday, March 25, 2012 11:32 PM
Joined: 12/6/2011
Posts: 3326


Here's a big hug, Tommy &gt;:D< big hug Our shoulders are here for you to lean on.
Iris L.
Posted: Monday, March 26, 2012 1:02 AM
Joined: 12/15/2011
Posts: 16240


nomemo, you are far from needing hospice.  Hospice is for late stage dementia patients.  You are at the point of needing to make plans for your future.  You can still do this!  We will help you! 

 

Several of us on these boards live alone.  We manage.  We figure out what we have to do and do it.  We have to get help.  It is a challenge to find the right help.  But that's what we on the board and the Care Consultants at the 24 hr Helpline will help you with.   

 

I had to call the National Office in Chicago to get help, but I did so, and I got directed to resources in my local area.  That's what you have to do, find resources in your local area. 

 

You say you are an only child in a family of 12.  I don't understand that.  Do you have siblings, cousins, nieces or nephews, anyone close who will be a support to you?  If not, you will have to rely on professionals.  But search around in your family for someone reliable to help and support you, first. 

 

You need to consider your options.   

1.   You can move in with a reliable family member who will   become your caregiver. 

2.  You can have a reliable family member move in with you. 

3.  You can hire part-time and eventually full-time professional caregivers. 

4.  You can move into the appropriate senior facility--assisted living with a memory care section when necessary in the future.   

 

The best option for you will depend upon several factors for you to consider NOW, while you still have the capability to evaluate and put plans in motion. 

 

Have you spoken with a Care Consultant at the Alzheimer's Association yet?  I suggest you do that as soon as possible.  You need to have a specific individual help you.

 

Please begin a new thread and tell us more about yourself and your situation.  Are you retired?  Do you have SSDI?  Medicare?  Do you have a disablity pension?  What plans have you already made for yourself?  How did you come to get your diagnosis of fronto-temporal dementia? Are you being treated at a Memory Clinic?

 

We will do our best on the message boards to guide, support, and encourage you.  Hang in there, nomemo! 

 

Take things one step at a time.  You will manage. 

 

Iris L. 


nomemo
Posted: Monday, March 26, 2012 5:59 PM
Joined: 3/21/2012
Posts: 439


well, when i say an only child in a family of 12 siblings, that means that i could never count on any type of help from any of them growing up.....as a matter of fact, i'm the third oldest and the oldest daughter and i had to help parent a lot of them.  but, as i stated earlier, it's like i don't exist any more.  i think that i started to notice things were not quite right around 2005 or so....had my first neuropsych eval and cognitive eval in 2007.  had my first CT scan and brain mri also in 2007, after seeing a neurologist.  was then diagnosed with dementia, not specified, although it was felt that i did not have alzheimer's.  let me back up.....also had extensive bloodwork to rule out vitamin deficiency, sleep apnea tests, heart monitor, more tests to rule out anything vascular.  neurologist said that he was determined to find out what specific kind i had becau;se, of course, better for treatment.  i was put on aricept and namenda.  i had 3 lumbar punctures; the first one was very messy, but no spinal fluid was extracted; the 2nd one was a guided one in radiologisy and results concluded that i may have CJD - i was really scared after that!  but my neurologist really did not feel that was the case, i was not progressing that rapidly.  a third one indicated that the 2nd one really was a false-positive.  it was then that i was referred to a neurologist in pittsurgh who is  reknown in the field of dementia - he had my results from here and ordered a SPECT scan which confirmed the diagnosis of frontotemporal dementia.  i immediately started my own support group with close friends that i could rely on here at home and we met about every 2 months.  each one signed up to call me each evening and that was good.....for abaout 9 mponths.  then that kind of fell apart.  at that time i did sign durable power of attorney, living will, and purchased a burial plot.  i also made arrangements as to how i wanted my funeral service to be.  the neurologist in pittsburgh and here at home both wanted me to leave my employment as administrative assistant in a social service agency, but i did not feel i was ready to and stayed a year longer.  it was then that i made my own decisioni to leave because it was becoming harder and harder to process and mistakes were being made....too many.  i went on medical retirement in august 2010.  i immediately applied for disability and was approved in october 2010.  however, because of disability guidelines, i did not receive my first check until march 2011. and, because i am under 65, i have to receive disability for 24 consecutive months to be eligible for medicare, which won't be until 2013.  so....i have had to pay for all of my office visits, etc.  however, i have been able to do it, with God's help.  my friends do bring over soups, stews, and other meals for  me to microwave.  i have burned myself on my electric stove numerous times, so i try not to use it.  i have been unable to finish my tasks at home.  i don't have the money to hire someone...i did have an initial interview with someone from hospice in 2010...at that time it was found that i did not need anyone.  it was also explained that hospice is NOT for late stage disease, of any kind.  it's for anyone with a terminal (irreversable) illness to provide home health aid, light housekeeping, nursing (even to check meds, etc), laundry, etc.  this particular hospice will also provide the meds i need at no charge, even though that has ot been a problem up to this point.  i do get weekly cognitive therapy with homework to take home, i see a counselor who has extensive experience with people who have brain disorders on a twice a month basis and she calls me at home on the off weeks. i've seen the neuropsychologist 2 more times since 2007, which indicated a decline, as  do yearly progress reports from my cognitive therapist.  i also see my neurologist and psychiatrist on a regular basis. i have used up any money that i had in my retirement, which, believe me, was not much, but it was enough to get me through the months until my disability check came through.  i applied for state medical insurance twice and was turned down, twice, because i make $87.00 a month too much on disability.  but, as i said before, i'm getting by.  my local hospital has a charity care program which i filled out and they will pay for any and all bloodwork and office visits with any physician within their health care system until november of this year.  what a blessing!  my friends are wonderful, but each has stuff giong on, i cannot possibly stay with any of them.  i have vowed to always stay at home.  i rent and do not have any assets.  so...as much as possible i will be at  home.    so...there it is....in a very big "nutshell"!  but i've been stumbling and falling...it seems that signals aren't getting from my brain to my feet!  and the tremors in my arms and hands are getting worse when i try to carry or hold things.  my word finding in speech has gotten worse.  so....my neurologist wants another brain mri to check on the changes.  that appointment will be made soon.  so...i feel that i and the drs. are doing all that we can.  i'm just sounding off.  like anyone with this disorder, i have good days and bad days and i guess yesterday was a bad day i'm sure i'll have more and it's good to know that there's a place i can go to where folks understand.  thank you so much for listening and for giving me the resources to check out.  i will.
Myriam
Posted: Monday, March 26, 2012 7:02 PM
Joined: 12/6/2011
Posts: 3326


Thank you, nomemo.  You are an inspiration.
nomemo
Posted: Monday, March 26, 2012 7:34 PM
Joined: 3/21/2012
Posts: 439


thank you, myriam, you are too kind.  i feel that, in  different ways, we all can be an inspiration to others.  bless you.
TommyT
Posted: Monday, March 26, 2012 7:58 PM
Joined: 3/23/2012
Posts: 17


nomemo wrote:
hello - i'm new to this group, so please bear with me. ....  hang in there!  you're not alone!
You bettcha nomemo! Glad to have you on the message board with us!
 Your upbeat attitude is what we all need to hear more of!
nomemo
Posted: Tuesday, March 27, 2012 12:18 PM
Joined: 3/21/2012
Posts: 439


thanks so much!   good to communicate with those "who know"!
Mimi S.
Posted: Tuesday, March 27, 2012 12:45 PM
Joined: 11/29/2011
Posts: 7035


Hi Nomeno,

 

Welcome to our Boards.

 

Sounds like you are a fellow Pennsylvanian. Welcome.

Pittsburg has wonderful Alzheimer facilities, so you are among the best. Do stay in touch.

 

Also Pittsburg is part of the Greater PA Alz. Chapter: my group and a great group.

 

That chapter is having an all day conference just for Early Stagers, their care partners and professionals on Thursday, April 26th. It's being held sat a hotel just north of Harrisburg. Why not see if your chapter has a group coming and if there's any way they could help with hotel expenses. Maybe your group could drive? What's the maximum the hotel will allow in a room.

Candy Yingling is the Early Stage Coordinator. You and anyone else in PA (or wherever) could e-mail for further information.


Geegee
Posted: Tuesday, March 27, 2012 6:25 PM
Joined: 11/29/2011
Posts: 514


nomemo, you are getting a grand welcome! Please let me join in!!


I'm so glad you found us.  I think you will be a terrific addition to our online family.  You have a positive outlook and that's what we love to see.  


Thank you for sharing your story. I think we can help you with some of the emotional support you may need.


Please know that since you are alone, you may need to call the 24/7 Helpline.  Just ask for a Care Consultant.  On weekends, less Care Consultants are available and they may have to call you back on weekends.  


You can find the number and information at the top of this page under "Contact Us."  You may want to write this number down and keep it in a prominent place for when you need it.


                       1.800.272.3900  HELPLINE 24/7


Look forward to your participation on the boards.  



Tonya2
Posted: Wednesday, March 28, 2012 12:56 AM
Joined: 12/8/2011
Posts: 33


Welcome nomemo.....I have Lewy body dementia early onset dx at 46.....glad you found the boards.....

Best wishes


nomemo
Posted: Wednesday, March 28, 2012 2:49 PM
Joined: 3/21/2012
Posts: 439


thanks to all!  i'll be sure to write the number down for the care center.  Tonya2...i love the pic of the cat!  wonder what she's looking at?  : )
Tonya2
Posted: Wednesday, March 28, 2012 3:27 PM
Joined: 12/8/2011
Posts: 33


I think she looks hopeful gazing up at the sky
nomemo
Posted: Wednesday, March 28, 2012 4:47 PM
Joined: 3/21/2012
Posts: 439


ah, you may be right!