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I spoke at a senate subcommittee hearing today
His Daughter
Posted: Wednesday, February 24, 2016 11:15 PM
Joined: 6/25/2014
Posts: 2270


I promised myself that I would try to do something positive with this tragic experience.  And today I did.   There has been legislation proposed in my state for a Death With Dignity Law.  While this legislation does nothing for dementia patients, I want terminal people to have an option.   And none of this ever happens, unless people get involved and speak up.  

My daughter and I spent from 11:00am till 6:45 this evening in our state capitol.   We both spoke at the hearing.  It was quite the turn out.  And while my state is always the last one to do ANYTHING,  at least this topic is up for discussion.  

 


Oceanbum
Posted: Thursday, February 25, 2016 10:34 AM
Joined: 3/11/2012
Posts: 433


Good for you!! You made your voices heard. You should both be very proud of yourselves!!

 


300sun
Posted: Thursday, February 25, 2016 10:56 AM
Joined: 2/20/2014
Posts: 294


Good for you and your daughter, and many thanks!

His Daughter
Posted: Thursday, February 25, 2016 11:49 PM
Joined: 6/25/2014
Posts: 2270


Well we'll see how it goes.  I live in a very conservative state.  But we've got to start somewhere, RIGHT?  

 


zallie25
Posted: Friday, February 26, 2016 7:48 PM
Joined: 2/8/2016
Posts: 11


Good for you and your daughter for having your voices heard,,,,,,,hopefully it was loud and clear and may reach other states,,,,,I feel like both of you spoke for me too!! Thank You

sincerely,

zallie


Rio75
Posted: Friday, February 26, 2016 10:56 PM
Joined: 9/8/2014
Posts: 82


Thank you, thank you!  You're an inspiration.

 


bela
Posted: Saturday, February 27, 2016 6:34 PM
Joined: 12/15/2011
Posts: 4120


Wonderful!!!! Were you invited or how does this speaking come to be?  Proud of you!!!!!
His Daughter
Posted: Sunday, February 28, 2016 11:59 AM
Joined: 6/25/2014
Posts: 2270


Bela,

While I'm certain every state is somewhat different, in mine, a senator drafts the legislation, and then the committee this proposal would fall under has a hearing on the bill.   Anyone can speak at the subcommittee hearing meeting.  First it was the proponents, then the opponents and then those with a neutral position.  

There was a large variety of people speaking on the proponent side, and an equal group of opponents.  The opponents can be categorized rather easily.  They were either the group with very strong religious philosophy, the right to life members, and the AMA.  

The AMA doctors all come at this from the position that they have never had any patient nearing death that didn't want to live.  And also, that a dignified death is about palliative care, hospice care, correct pain medication, and having the family by their side.  

I don't know who these doctors have seen as patients, but as I later told one of these doctors in the hallway, I found his testimony to be a complete lie, and disrespectful to those who have gone through horrible deaths with their LO.    My mother died of multiple myeloma, a very painful form of cancer.  She was treated by one of my states best  institutions and had an excellent oncologist.  She had spent 7 days in the hospital when they sent her home to die.  "There is nothing more we can do."   She was wearing a pain patch, and in such agony, we had to hire an ambulance to bring her home on a stretcher.  You couldn't move an arm or a leg without her crying out in pain.  (So according to this doctor, apparently my mother must have had a bad oncologist.)

I simply resent these doctors acting like they have ALL the answers....cause THEY FLAT OUT DON'T.  And as I told this man, "Doctor, the day your daughter has to stick her finger in your ________, to retrieve fecal matter,  let's just see how dignified you feel." 

(Sorry I know that is very graphic, but boy, how about a dose of TRUTH!)  

 

 

   


Because she's my mom!
Posted: Sunday, February 28, 2016 6:52 PM
Joined: 12/15/2011
Posts: 737


Good for you and your daughter. Fortunately, our state has had a Death with Dignity Law since, I believe, 2008. It had been on the ballot at least once before, and a dear friend of mine, who was dying of lung cancer, pleaded (in commercials) to the public to vote for it. It didn't pass that time, and she died several months later in tremendous pain.

As you say, it doesn't help those with dementia, but hopefully there will be a similar law in the future that allows those who have stated while they are perfectly healthy that they do not want to live through the last stages of dementia. WE know what it's like.....most of the public do not.
 
I know that my husband and I would sign such a document. Neither of us wish to merely exist like my dear mom did for so many years.
His Daughter
Posted: Sunday, February 28, 2016 10:48 PM
Joined: 6/25/2014
Posts: 2270


Because she's my Mom,

I AGREE 100%.  We've got to get a handle on this in this country.  It isn't fair to all the people who will be diagnosed with this disease.  That isn't what I want for myself or MY DAUGHTER.   So yes, a death with dignity law is the first step.   We've just got to speak up and hope those who are lucky enough not to know this disease, can someday understand.  

This isn't what your mother or my father wanted.  And I'm going to make someone listen!!!


bela
Posted: Sunday, February 28, 2016 11:44 PM
Joined: 12/15/2011
Posts: 4120


Wow!!! Impressive of your efforts and continuing to speak the truth! Doctors do not know everything.
Lesley Jean
Posted: Thursday, March 3, 2016 8:15 AM
Joined: 2/13/2013
Posts: 2965


Please tell me how you got the attention of the subcommittee. I want to change the VA policy that dementia patients have to be placed in a. Nursing home and they will not allow them to go to a memory center, where they could get real assistance. 

Thank you, 

LJ


His Daughter
Posted: Friday, March 4, 2016 8:22 PM
Joined: 6/25/2014
Posts: 2270


Lesley Jean,

I don't know what state you are in. But I'll guess they are all similar.   If I had a topic like yours, I guess what I'd do is start with the senator from your own district.  I'd call the office and if nothing else, speak to the legislative aid.  These people can often be very helpful and at least direct you to the the committee that would handle that new bill.   Then I would be looking up all the members of that committee and feeling them out to see if there is interest.  You could ask if your senator might possibly be interested.  If not, then move on to another senator!    
   You would have to get the interest of some senator who would be responsible for drafting the bill and being it's sponsor.  They would then jump through the hoops to get the bill introduced.  There is generally a hearing on all proposed bills, and it is open to the public to speak.  Then the subcommittee votes on the issue, and if it receives a majority vote, then it will be advanced to the general senate floor. 
   It's an exhausting process, but well worth the effort, if you have an issue that would benefit many and is simply the right thing to do.  
 
Good luck,  and go get 'em girl!

Lesley Jean
Posted: Friday, March 4, 2016 11:40 PM
Joined: 2/13/2013
Posts: 2965


Thank you so much. Monday I will be making phone calls. You have been very helpful. 

Thanks, 

LJ


a_step@a_time
Posted: Tuesday, March 8, 2016 2:48 AM
Joined: 11/21/2015
Posts: 237


GOsh I hope I didn't hit wrong button and flag because I love this post!  

TThank you for your efforts!  I am getting too sick to do much proactive work.  I can't even get diagnosed.

WWhat the AMA doctrs don't point out is that our human bodies automatically try to live by nature itself.  But people don't want to suffer either.  

*deleted my last line comment, may cause hurt feeling*


a_step@a_time
Posted: Tuesday, March 8, 2016 2:55 AM
Joined: 11/21/2015
Posts: 237


I also  like the patient who is making voice on "right to try" legislation.  (Try new meds for terminally ill, - when all else fails, or medications that show success in other countries)
Camaya429
Posted: Monday, July 18, 2016 1:03 PM
Joined: 9/1/2013
Posts: 87


To "His Daughter,"

I am very glad that you made it as far as you have! I just hope you are in my state (AZ). I do feel that my state is very lax in getting things done. I too was "his daughter" then "his caregiver" (my brother also was not involved much), then finally "his legal guardian." As most caregivers may know, or not-I do know each case is different, my father didn't even know who I was anymore. I swore I was gonna do something about this horrendous experience in my father's honor, since I felt so helpless throughout his care.

I wrote what I thought was a very profound and well thought out letter about his care and my experience up until the day he passed with little to no response. I wrote our congressman, state senator, the president, the Alzheimer's Association in WA, the council on aging, NIH, NIA and celebrities that I know have spoken on behalf of Alzheimer's/Dementia due to having a parent or close family member who passed away. Also Human Health Services. I received a proclamation from the president and a letter, and the NIH and NIA responded reassuring me that everything that can be done is being done. So I then sent follow up emails to all who did not even respond. I should have known better. I would run into people I'd known for years, who knew my dad as well and they wouldn't even ask how he was doing or even how I was doing.

Unless you have been through what we've been through, people for the most part do not want to hear it. This experience has changed my whole life, way of thinking, my marriage and my beliefs in my religion.

I suffer from PTSD from images of lacerations and bruises from the many falls he succumbed to. He managed to get out of an assisted home I had placed him in. His last words are etched in my mind.

His two older brothers also died from this cruel and evil disease. He told me one day before the dementia had really set in "if I every end up like my brothers, I'll shoot myself." But it creeped up on him and he didn't even realize it was happening. I feel life will never be the same. Yes, I do have moments of sheer joy (with my granddaughters and my sons), but I feel life is more struggle and bad things than good. My heart is forever broken.

Well, I could go on for days, but I initially wanted to say thank you for your patience and determination. I had always believed that we don't play God, for he knows what we need better that we know ourselves. However, being well aware that my father would rather die than go on the way he did, forgetting how to eat, walk and not recognizing the people he loved most - that is NOT living.  Thank you! Be well.


bela
Posted: Monday, July 18, 2016 4:05 PM
Joined: 12/15/2011
Posts: 4120


Good job His Daughter!
His Daughter
Posted: Friday, July 22, 2016 7:37 PM
Joined: 6/25/2014
Posts: 2270


Camaya429,

I just saw your wonderful post.  Bless you for all that you have already done.  And while I agree that many people don't want to hear our message, it simply must be told.  I have said many times, that there is a crisis coming in this country.  We're called the baby boomers.  And this country can't afford what's coming.  

I've never wanted this to be about money.  I want this issue to be about true human compassion and heart felt love.  But honestly, whatever moves this country to individual freedom of choice, for end of life issues, is where I'll throw my hat, because we simply have to change our thinking.  

This damn disease is one of cruelest things I have ever seen.  And what I realized throughout this process with my father is that we are the reason that the 7th stage of AD even exists.  Without our loving care, the progression of this illness would end life much earlier.  That's a pretty hard thing for a loving daughter to admit.  But it's true.  My father would have died from AD at least 1 1 /2 years earlier, had I not picked up that fork and fed him, when he could no longer feed himself.  But I could have been charged with a felony in my state, if I had allowed this disease to take him at that stage of the game.  But how cruel to make him go on.   We honestly wouldn't treat our pets with this sort of thoughtless cruelty.  I know, like I know my name and his, that this is not what he wanted.  Not for me, or for himself.  

All I can do is keep showing up, keep writing, keep telling my story.  Keep reminding those who have little to no understanding of this disease, that these are REAL PEOPLE, with REAL DAUGHTERS AND SONS WHO LOVE THEM. 

Someday, they may be facing what we have experienced.   And then, when it's too late, they will understand.    


MPSunshine
Posted: Saturday, July 23, 2016 3:07 PM
Joined: 5/21/2016
Posts: 2008


Hi, His Daughter, I'm grateful that people like you and your daughter are standing up and testifying.  Just today my daughter's friends were visiting our dog, who is in the final stages of kidney failure. She is content and mostly sleeping at this point. My daughter's friend was talking of how awful her grandfather's death was.  He was asking to die, asking to die, and all that could be done was to give him morphine.  He was in tremendous pain. He was confused and hallucinating, and in the final stages of pancreatic cancer.  It's a terrible thing that she witnessed, and is one of the final memories of her beloved grandfather. Her grandfather was calling out in pain, asking to die. There has to be a humane way to allow people to exert their own will during their final days. 

Nadine