Caregiving resources for every stage of the disease.
RSS Feed Print
How do you deal with this
Brother J
Posted: Monday, June 19, 2017 10:20 AM
Joined: 6/18/2017
Posts: 9


I have early Onset Dementia.  I fall often. Social Security has determined I am disabled and should receive my first check at the end of July.

I will be 52 years old on Thursday. I am way too young for this. I watched my Mother go from a highly educated and strong woman to a vegetable before the end.  My wife saw her father follow almost the same path.
My wife is a wonderful, caring, phenomenally giving person.
 
This disease....  MY disease is turning her into someone I have never seen before.
 
She has always jumped when someone is in need...  my asthema was giving me difficulties yesterday and she must have asked 10 times if I needed to go to the ER...   

Right now we don't have health insurance. She quit the part time job she had to get one with health insurance.... but that didn't work out.

So all of this stuff is piling deeper and deeper and she is overwhelmed. She is scared, she sees Superman needing more and more help.

She has spoken to the Dr and the local Alz foundation and they don't recommend going to a support group since she will hear horror stories.

Ok....  now the hard part....  she yells....   she cusses....  she slams cabinets....  she is turning into a monster and it is MY FAULT. She was kind and gentle with My Mom. She was also wonderful with her dad.

My marbles are not all gone....  my worst issues are intermittent... if I am out walking in the mall for example if the fog comes, I sit....  I put on my headphones and music works to clear the fog... so maybe I lose 15 minutes....   I am looking at the gps watch to help ease worry if I go out.

I can't stand to see what this disease is doing to her and to us. I don't know what to do. i am not currently suicidal but I can't avoid the reality that I am a huge burden.

We married 7 years ago, if I knew about the dementia I never would have married her or anyone else.

I simply don't know how to do this....


Hi.Phi.High
Posted: Monday, June 19, 2017 1:19 PM
Joined: 6/29/2012
Posts: 73


Brother J, I have read what you wrote and I have had to laugh. Please let me explain. I am 60 years old and was diagnosed with Early  Onset Alzheimers Disease last August. My birthday is also Thursday June 22. I was also approved by Social Security to start receiving disability benefits in July retroactive til the time I applied.  I too thought "I'm too young for this sh--." Try to understand where your wife is in this situation. Yes she has dealt with this before, but not in someone as youthful as yourself. I can see where that may make a difference. I'm sure at times you feel like with your disease you have stepped into the Twilight Zone. Your wife has also. At this point, having received a diagnosis, no insurance is going to touch you (me either ). You should be able to get medicaid, apply for it as soon as possible. It was automatic with my Social Security determination. Do start using the Early Onset page in these forums, it's there for people just like us. You will find more information and understanding there than any place else that I know of. You are not alone sir and neither is your wife. I am going to try and send you a request so we can communicate one on one if you would like. We share a lot more than you may think. 

Iris L.
Posted: Monday, June 19, 2017 3:19 PM
Joined: 12/15/2011
Posts: 14451


Welcome to our online support group, Brother J.  I have been here for eight years.  When I came, I was told about Best Practices.  Best Practices are lifestyle habits that help with functioning and help to prolong the early stages.  Best Practices have done what they are supposed to do for me.  My dx (diagnosis) is cognitive impairment not otherwise specified. 


I believe that once you get on some treatment with Best Practices, and learn more, your life can settle down a bit.  Are you on Aricept or Exelon patch and Namenda?  There is much to learn.  It won't be easy.  But you and your wife do not have to be miserable.  I call people like us Dementia Pioneers, because we are the first generation who are pro-active in our own care.  


The doctor is right, there are horror stories at the support groups and even here online on the caregiver boards.  But we can choose to make our lives not become horror stories.  This is what I believe.  I am not going to allow my life to become a horror story!  I fell into a deep depression in 2010.  What got me out is a decision that if I do have dementia, I'm not going out like a victim!  That has been my affirmation ever since.



Please join us on the YOAD (Younger Onset) board.  The other PWDs (persons with dementia) want to meet you!


Iris L.


Brother J
Posted: Monday, June 19, 2017 3:58 PM
Joined: 6/18/2017
Posts: 9


Sounds like twin brothers of different years....

Margaret is wonderful....   looooong suffering, but wonderful.

Neither of us expected this, at least not this soon.  20-25 years from now...  still stinks but understandable.

This started 18 months ago and I worked until 6 months ago. When I started looking for info on the disease and where to go from here I felt a lot of resistance. When I went to a monthly meeting on June 5th and mentioned the SS Disability was approved people were dumbfounded. 

I got hammered with questions....  how did you get approved at 51 years old... what lawyer got it pushed thru for me...  how many times did I file...

I filed in December when I lost my job, NO lawyer, this was my first time filing...

I believe 2 things "helped"...  I have always had a talent for falling and I have had 4 knee surgeries and my knees are junk. The D knocks out brain jobs and the knees knock out physical jobs. It may have also played a part that I have always worked usually 50 hours plus.

It is a reality shift for both of us. For me...   I am supposed to take care of my family. I'm supposed to be strong and when things get tough for Margaret it is like a knee to my.... manhood.

Margaret and I met in 77... I have always been strong and tough and "bullet-proof". We reconnected 10 years ago and I was the same bullet proof. 

My only request in communication is this....   I am J, Brother J, pain in the ... J, but that respectful 3 letter word SIR is like putting on a small shirt...  it simply does not fit.

Thank you very much for writing back...  logically I know I am not alone but spiritually and emotionally it is east to feel alone.

My whole life music has been very powerful, one of my friends is big in the Trop Rock/Parrothead circuit he is playing about 80 miles from me on Thurs and closer on Fri and Sat...  I will raise a glass in your honor in at least one of those occasions. Have a great 21st birthday on Thursday.

J


Brother J
Posted: Monday, June 19, 2017 4:06 PM
Joined: 6/18/2017
Posts: 9


Iris,

Thank you for responding...  no meds at this time. 

When I wrote my post I had no clue what was what. I saw the YOAD board after I posted.  I will head over to the kiddie table.

J


Iris L.
Posted: Monday, June 19, 2017 4:46 PM
Joined: 12/15/2011
Posts: 14451


Brother J, keep in mind what I said about us being Dementia Pioneers.  Pioneers are NEW at discovering the pathway to go.  That's us.  We are new at this.  Other people who have been on the path for years, will have horrible stories to tell.  The only place to find Pioneers is here on these boards.  We are helping EACH OTHER carve out the new pathways through the wilderness of dementia misinformation and despair.  I don't even listen to other people, especially professionals, in the outside world, because they just don't know.  They don't have the PERSPECTIVE that we Pioneers have.  They are only familiar with the late stage patients who have advanced disease.  


You are now a Dementia Pioneer.  What you learn on your journey, along with your wife, will become part of the Pioneer effort for those who are now alongside you, and for those who will come after you.  I am STILL LEARNING from my fellows on this path, on the YOAD board and on the two caregiver boards.


IMO, the only way to succeed is to absorb and learn from our peers, the other members here.  They have done me a world of good!  I have no doubt that being here and participating will help you and your wife, too!  See you on the other boards.  But we post on all boards, just so you know, Brother J.


Iris L.


Mimi S.
Posted: Monday, June 19, 2017 7:59 PM
Joined: 11/29/2011
Posts: 5500


Hi Brother J.

Welcome to or world. We're so glad you found us.

I would suggest both you ad Margaret would be helped  by counselling. You need different social workers and they both must be dementia knowledgeable.  Your local Alz. Ass. office should be able to give you some names.  That office is a good place with which to  become acquainted. iIf you don't have the local office #, do call and ask our help line: 1-800-272-3900.

Both Iris and  are huge proponents of Best Practices. Incorporating it into your life style will also help your diabetes.

Has the reason for your falls been investigated?


Brother J
Posted: Monday, June 19, 2017 10:51 PM
Joined: 6/18/2017
Posts: 9


My falling is a combination of things....  1) after 4 knee surgeries the consensus is my knees are junk. 2) chronic congestion and in the past frequent ear infections in my right ear and 3) distraction...   I can be walking on the sidewalk and see a pretty girl, a nice car, or the ice cream man and I take a bad step

 

J
Iris L.
Posted: Monday, June 19, 2017 11:25 PM
Joined: 12/15/2011
Posts: 14451


Brother J, falls can be serious for PWDs because the consequences of falls can cause progression.  Do what you can to limit and avoid falls.  Falls are a major cause of nursing home placement.


Iris L.


JJAz
Posted: Wednesday, July 5, 2017 7:24 PM
Joined: 10/21/2016
Posts: 211


Brother J wrote:
  This disease....  MY disease is turning her into someone I have never seen before.
 

She has spoken to the Dr and the local Alz foundation and they don't recommend going to a support group since she will hear horror stories.

Brother J,

It's so unfortunate that the doctor recommended your wife NOT going to a support group.  I TOTALLY DISAGREE, and everyone in the group I attend agrees that we couldn't make it through this horrible disease without support of others who are going through the same thing.

I expect that not all support groups are created equal.  So if one doesn't work out, try another one.  But the things that I've learned have improved my patience immensely.  It's a place we can cry and whine. But being with others seems to bring out the best in each of us.  We support and encourage each other and provide tips and hints. 

 And I'm not a support group person.  I really didn't want to go, but I'm so glad that I did.  She needs to go 3-4 times to begin to get comfortable with the vibes.  It's not just a community of people, it's a community of friends after our other friends fall off the train along the way.

Blessings,

Jamie

 



 
× Close Menu