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CTE and FTD
Haven
Posted: Tuesday, September 18, 2018 12:46 PM
Joined: 11/2/2017
Posts: 41


After 2 years of post concussive and other diagnosis.we finally have a diagnosis for my 58 year old husband. FTD caused by CTE. His last concussion,there was no bounce back. He was a hockey player then construction worker and had numerous concussions. A 60 minutes documentary last week opened my eyes to CTE.It is becoming more common and can lead to FTD. There is no treatment,no pills.The worst case scenario. Yesterday our doctor hugged me and said "I would not trade places with you for anything"She told me to go back to work and get a life outside of the house.Anyone out there with the same diagnosis?
Jo C.
Posted: Tuesday, September 18, 2018 1:25 PM
Joined: 12/9/2011
Posts: 10225


Hello Haven, I am truly very sorry for what is happening and can imagine the deep concern and stress this has brought to you and your family.

I hope you get some good input on this Forum, but also want to invite you to Post on both the Spousal/Partner Forum and the Caregiver's Forum.

Those two Forums are the ones that are most well-attended and there indeed have been Members on those Forums whose Loved Ones, (LOs), have experienced CTE and FTD or CTE and another co-commitant dementia.

Also, the Alzheimer's Assn. has a 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 service and Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are highly supportive, have much information and also can help us with our problem solving.

You are so right; CTE is finally being recognized as a significant problem.  I find myself concerned regarding the young kids in tackle football.  What happens in high school, etc. may deeply affect their futures.  CTE is no joke and can initially be a hidden issue until years later.

Take good care of you too, and do look into the other Forums for additional helpful input.

J.


alz+
Posted: Tuesday, September 18, 2018 4:23 PM
Joined: 9/12/2013
Posts: 3549


I'm so sorry your husband had the misfortune to be hit in the head and now his brain is suffering.

How do you feel about your doctor's comfort, that she would not want to be in your shoes?  I find those kinds of statements to be  poison pills for the type of care people with dementia will receive as they become more dependent on others.

Being around someone who is not suited to care for another, or if the relationship has been difficult probably means a tendency towards easy frustration, aggravation, impatience etc.

Maybe think about what your husband responds to, what makes him more comfortable, what he might enjoy doing.

Much treatment is making an environment easy for patients to handle and explore.  Observe, make a list of what went well, what went bad, and what was happening so you can direct more towards what works.

Back rubs, animals, nature, audiobooks, music, ...  every one is different, I wish you the best. I think you may have some incredibly wonderful  times together. Open your heart to him,  take care of yourself, know your limits.

love and courage



Haven
Posted: Tuesday, September 18, 2018 5:08 PM
Joined: 11/2/2017
Posts: 41


I work full time and it is necessary to pay bills My husband watches T.V or sits in our sun room. We were very independent of each other and it seems this will continue although I will be the responsible one.I am happy with my doctor who gave me permission to have a life and not go down with the ship.I have kids that need me too.
ExpressoTime
Posted: Friday, September 21, 2018 10:31 AM
Joined: 3/11/2018
Posts: 546


Haven, 

It sounds like your husband worked very hard for many years, and did so taking risks to his brain health, risks he surely did not even know about. Perhaps now it is best to be thankful for his years of providing for your family, and have the family give back to him for his sacrifice. 

I find the best approach for me is humility and compassion. When in a difficult relationship I find this far more difficult to overcome. As much as we all have to look out for ourselves, I know that before my story is over I will need the compassion and understanding of others. In fact I can remember several times in my life that the help and compassion of others is what made me able to pull through. It is our respect for our fellow human that makes this life worthwhile, not to forget to mention bearable. Sometimes from the charity of family, sometimes from the good will of complete strangers. I find what the doctor said to you callous and unprofessional.

As for being responsible, I do hope that you understand that your husband may have reduced capacity to understand responsibilities in the same manner he used to. 


Haven
Posted: Friday, September 21, 2018 3:05 PM
Joined: 11/2/2017
Posts: 41


I was also working and supporting our family financially. It just so happens his pension won't kick in for 5 more years. I have to work or we are in big trouble.His family walked away from him 16 months ago and made it clear via a phone call to stay away. It is me and me alone. No help no friends, no neighbours.They have all walked away because "it is too painful to watch"Well I am watching and it is killing me!!I can't stay at home giving him back rubs as someone suggested. He does not move off the couch. He does not care if I am there or not. He eats the lunch I leave next to the couch and he is there when I get home. He just lays there hoping to die. Sad but true.Watch 60 minutes program and someone just like my husband is on there but he died in his 40"s

 

 


Andrew60
Posted: Friday, September 21, 2018 3:21 PM
Joined: 7/17/2017
Posts: 342


Why is this not posted on the caregivers section?
Mimi S.
Posted: Friday, September 21, 2018 3:58 PM
Joined: 11/29/2011
Posts: 7035


Andrew, Any one may post on any section.  The original post may have been of interest to other PWD who had suffered concussions or falls.

It is also true that posts dealing with caregiver's concerns may get more responses if posted on either the Caregiver's or Spousal Board.

I also recognize that many PWDs get upset reading about the difficulties Caregivers encounter..

If so,   please, quickly exit that thread. I'm so sorry if yo were upset.


llee08032
Posted: Saturday, September 22, 2018 8:57 AM
Joined: 5/20/2014
Posts: 4406


This just came to me today... perhaps the title of our board is misleading and it should read Persons who have younger-onset AD or another dementia? 

The current title of our board could suggest this is an informational/support board about younger-onset AD or other dementia's. 

Sounds like an easy problem to solve to me. Maybe it's time to ask for a change? 

Consequently,  my own solution to not reading disturbing posts here on our board is just to scan the post to see if it is a new caregiver and then I do not continue to read the post if that is the case. But there are times when these threads get really lengthy and I'll check to see if there is information I can use or if the tone of the thread has changed. 

Once again I'm reminded how we so often need to rely on ourselves to come up with solutions.

Anyone in favor of changing the title of our board?


Andrew60
Posted: Saturday, September 22, 2018 9:23 AM
Joined: 7/17/2017
Posts: 342


I agree with LLee, good idea to rename this section.
Haven
Posted: Saturday, September 22, 2018 9:31 AM
Joined: 11/2/2017
Posts: 41


I feel sufficiently chastised.Thank-you. I will not post again.
BadMoonRising
Posted: Saturday, September 22, 2018 10:34 AM
Joined: 4/22/2017
Posts: 285


Haven,

Not everyone on this board has the same mindset. I admire your decision to do what is best for both you and your children. I also think your physician's candor should be lauded. Be aware that you may also get some grief on the other boards because people often don't realize that what they "see" is skewed by their own personal experiences. Take care.

BMR


ako
Posted: Saturday, September 22, 2018 7:19 PM
Joined: 3/20/2018
Posts: 6


Haven I know what you are going through.  My husband too was diagnosed with FTD/ PPA.  He is now 66.  He had been working 2 jobs, lost one of those jobs Fall 2014 and the other job Spring 2015.  I thought it was due to his worsening hearing loss and auditory processing problems.  After 2 years of searching and testing we were given a diagnosis of FTD.  I had to quit my job a couple of years ago because I could no longer trust leaving him home alone.  He has become mute, only thing he says is the word "yes" even if that isn't the correct answer and he rarely even says that. This is an ugly disease. Keep yourself as strong as you can.  That's easier said than done but I am trying to do so too.

I often get on the caregiver chat room later in the evening.  Its a great group of people who have a shared concern.  You might want to get on some time.

 


llee08032
Posted: Monday, September 24, 2018 7:19 AM
Joined: 5/20/2014
Posts: 4406


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Iris L.
Posted: Tuesday, September 25, 2018 4:18 PM
Joined: 12/15/2011
Posts: 16199


Haven wrote:

 It just so happens his pension won't kick in for 5 more years. 

 

Haven, since he has a diagnosis of CTE, he should be eligible for Social Security Disability Insurance.  Go to alz.org and search for "Compassionate Allowance."  This allows for fast-tracking of the application process.  Also, call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant about this.  If he is a veteran, the VA has additional help to offer, but you have to push for it.  They do not readily give it.  

The members on the Spouse/Partner board have much great guidance and advice to give.


Iris L.

 

 



Haven
Posted: Saturday, September 29, 2018 8:06 AM
Joined: 11/2/2017
Posts: 41


Thank-you Iris.We live in Canada and he has gotten a disability pension for the last year.It does not pay the bills and so I must work.Thanks for your helpful comments.