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I feel so angry...
daughter#3
Posted: Friday, December 23, 2011 1:11 PM
Joined: 12/23/2011
Posts: 1


My mother has Alzheimer's. I guess it's the stress of caregiving and the holidays, but I feel like I need to vent. Does it bother anyone else how much attention is paid to research/suppport for other diseases when Alzheimer's gets relatively so little? For examles, if I see one more thing about cancer awareness right now I think I will scream.  I am no stranger to cancer - my sister died of cancer.  Yet right now I think what my mother is going through with Alzheimer's is as bad or worse but we get precious little suppport.  Where are the ribbons for Alzheimer's?!

 

People will ask me, "Does your mom still know who you are?" as if this is some great litmus test for how bad things are.  Yes, my mother still knows who I am, but her suffering (and mine) are huge. She knows she is "not right" and it is making her deeply depressed.  She says she wants to die.  She is becoming incontinent which makes her feel horrible and is not a lot of fun for me, either. I tell her I love her, but it is never enough to ease her suffering. No, she's not getting chemo, she doesn't have stitches from surgery and she's not in the hospital.  But she is dying from a terrible disease nontheless. 

 

What is really remarkable to me is that she is not suffering some rare affliction.  (Perhaps if she were she'd be featured on a talk show and then she'd get support and sympathy.) No, she is suffering from a disease which is going to reach epidemic proportions as the Baby Boomers age.  Again I ask, where are the ribbons for Alzheimer's? Where is the hue and cry?

 

 


skericheri
Posted: Saturday, December 24, 2011 3:41 AM
Joined: 12/10/2011
Posts: 287


I'm very sorry to hear about your mother and know how frustrating to slowly watch someone with A/D lose ground.   Your anger over the lack of funding for A/D is something I experience too. 

 

I worked through it by telling myself that:

 

1.      Much of the public as ignorant enough to believe that just because there are pills like Aricept, people with who took them were in the process of being 'cured' or so afraid that they do their best to believe that A/D will never strike them or their families.

 

2.      Others did not get angry enough to take the time to write their elected representatives who are in charge of allocating federal funds for research

 

3.      Most of our representatives either spend most of their time catering to the lobbyists  who funded their election or are not creative enough to come up with an idea without being screamed at by the public.

 


The Musing boards are not that frequently visited.  If you are frustrated by the lack of response to your thread, try posting on the Caregiver board.


VKB
Posted: Saturday, December 24, 2011 6:02 PM
Joined: 12/4/2011
Posts: 3689


Daughter #3

 

I agree, I so agree.  Would you be brave enough to send this letter to a talk show host, such as Dr. Phil.  He might be willing to do a whole show on dementia/ Alzheimer's.  He is a champion of worthy causes.

 

Actually, if all of us at this site wrote to him, we might get this illness some attention. 

 

Godspeed 


Iris L.
Posted: Saturday, December 24, 2011 7:39 PM
Joined: 12/15/2011
Posts: 16944


My personal belief is that Alzheimer's doesn't get enough attention because it's a disease that affects mainly old people.  But as time marches on, we baby boomers become the old people. And we're developing dementia before becoming officially old, which I'm told is at age 65.

Dr. Phil had Coach Boyle, of Coach Boyle's Playbook fame,  on his show about two years ago.  I turned it on at the very end, so I don't know what was brought up on the show. 

More awareness of Alzheimer's disease and the other dementias is a very important goal for us.  Perhaps we can put our heads together and think of something that will be beneficial for all. 

Iris L.


Lisa428
Posted: Saturday, December 24, 2011 10:58 PM
Joined: 12/5/2011
Posts: 795


I interviewed for the Oprah show a few years ago but did not get a call back.

Perhaps we can all e-mail Dr. Phil and see what happens?

We definitely need more press, attention and AD/EOAD awareness.

Hope everyone has good Holidays!

Peace and hope,

Lisa


SnowyLynne
Posted: Friday, December 30, 2011 4:52 PM
Joined: 12/1/2011
Posts: 29


A bunch of us from the DASNI website trird to interest Oprah,but she wasn't.......

Most people don't realise some in the 30's & 40's get ad.or dementia.Drs reuse to address it at all.......


Ethiopia
Posted: Saturday, January 28, 2012 11:07 AM
Joined: 1/28/2012
Posts: 2


I get tired of the "does she recognize you?" question, too.  Yeah, right ... like that really matters.  Better to ask me, "Were the linens wet this monrning?" "Did the washing machine work?" "How long did it take to get her ready this morning?" ... there's a ton of things to ask besides if she remembers me.
Kathio
Posted: Tuesday, January 31, 2012 5:19 PM
Joined: 1/28/2012
Posts: 5


My husband believes its to get all the elderly's money, instaed of the children.  It wipes them out financially and then they die.  Why would the gov't, big business (pill makers) want to fix this epedemic?   $$$$$$$$$$$
Jim Broede
Posted: Wednesday, February 1, 2012 1:48 AM
Joined: 12/22/2011
Posts: 5462


I find that the world is the world. It is what it is. Some things, I can change. Usually my attitude about this or that. Acceptance of what I can't change. And work for change of things I can change. And then, don't lose sleep over the things I can't change. And I set my priorities. Knowing that I can't possibly get around to everything that I can change. I try to deal with the stuff that's most important. To me. I avoid feeling overwhelmed. Because that does no good. Just drags me down to where I don't wanna be. Also, when someone calls to solicit money or support for something or other, I often say, 'No. I prefer to give my money and support to Alzheimer's. Because my dear wife died of Alzheimer's.'  That makes life and decisonmaking simpler. I can't be all things to all people and to all causes. Gotta pick and choose. --Jim
Daybyday
Posted: Monday, February 6, 2012 10:41 PM
Joined: 2/6/2012
Posts: 2


Create a moment of joy for your mom.  Do something nice for yourself.  Give it over to God and take a rest.  It is very difficult to be a caretaker.  Hang in there.  I have done it for many years.  You have every right to be angry.
pawpaws frannie
Posted: Wednesday, March 14, 2012 5:53 PM
Joined: 3/14/2012
Posts: 1



txbo57
Posted: Saturday, March 17, 2012 12:14 AM
Joined: 3/16/2012
Posts: 62


(Jim) In the midst of the rest of the discussion and debate, struggling with how do we get the attention and focus we'd like to see on the disease...I'm sorry for your loss.  I don't know you, you don't know me, but we share the same path...we're just on different points.  I just about fold up sometimes, knowing what's waiting for me, and her, down the line.  I can walk through it mentally, emotionally, physically, but I still realize that it will be different that what I'm imagining.


Again, sorry....truly sorry...for your loss, but hang in there...folks need to hear from us.  From you, who has been there, and from me, who's headed that way...


And I'm not looking forward to it at all.


Bo


Be Strong 2
Posted: Saturday, March 17, 2012 1:17 PM
Joined: 12/14/2011
Posts: 1751


txbo57 wrote:

(Jim) In the midst of the rest of the discussion and debate, struggling with how do we get the attention and focus we'd like to see on the disease...I'm sorry for your loss.  I don't know you, you don't know me, but we share the same path...we're just on different points.  I just about fold up sometimes, knowing what's waiting for me, and her, down the line.  I can walk through it mentally, emotionally, physically, but I still realize that it will be different that what I'm imagining. 


 

Again, sorry....truly sorry...for your loss, but hang in there...folks need to hear from us.  From you, who has been there, and from me, who's headed that way... 


 

And I'm not looking forward to it at all. 


 

Bo 

Bo,

I used to read all the info sites about all the different Alzheimer's symptoms and it scared the h*** out of me.  When I came here and read some of the topics that just added to my fear.

Then one day a wise caregiver said, "Not all Alzheimer's patients experience every symptom, in fact, most experience only a few" (that's enough).   

Most Alzheimer's patients have a relatively smooth ride, with some bumps here and there.  Those individual bumps can seem extreme at the time, and can be very frustrating when trying to figure out how to deal with them.

Each Alzheimer's Loved One will have a unique experience.  It is definitely a one day at a time ride.  

Know about the possibilities but don't dwell on them.  Be ready and experience them when they come, but for now just live in the present, one day at a time.

Bob  

libedon
Posted: Monday, March 19, 2012 1:02 PM
Joined: 3/19/2012
Posts: 9


I think this disease gets swept under the rug because it's uncomfortable. No one wants to think that it can happen to them, but it is one of the top 10 killers of adults... and it's the only one without a cure. Healthcare doesn't know what to do with a dying patient that doesn't have the capacity to dictate their needs. They are helpless - and it is terrifying for the patient and everyone involved in the story.

I don't know if it's fair to say that it's not fixed because they want people to die from it and take all of their money. My family gives so much out of their pockets just to keep their mothers afloat - there's not a healthcare plan in the world that can fix that. Be fair - this is the first generation that has dealt with their parents and alzheimers in this way.

I know how hard it is to hear "well do they know who you are?" sometimes. usually after I introduce myself and she fakes it. Sometimes she knows something is missing from her and she can't put her finger on it. Sometimes she thinks she's in a car when we're sitting at a table. Sometimes she's violent towards other patients. There is so much more to this than a selfish question like that.


TraciLJoseph
Posted: Monday, April 2, 2012 8:00 PM
Joined: 4/2/2012
Posts: 3


Yes, a thousand times, YES! This! I get this question too, from well-meaning friends who have no idea how blissfully ignorant they are (about this disease, not in general!). I can't tell you how many times I've wanted to come back with exactly that ...

 

How many times did I mop the bathroom floor this morning? How many times did I wash poopy clothes and scrub it off the floor? How many times did I answer the same exact question, and how many times in a row? How many cuticles did my mother bite into bloody stumps today?

 

 

This disease is horrific for everyone who has to experience it. I used to think it was worst of all for my mother and for sure, it was during the early stages. She's reached the point where she's no longer certain what is wrong, and she has some anxiety about that, but it is nowhere close to the agony I feel in being ground firmly in reality while having to patiently answer the same question in the same calm and reassuring manner for the 50th time in an hour. All while holding my breath because she forgot to brush her teeth yet again


Jim Broede
Posted: Thursday, May 14, 2015 3:59 AM
Joined: 12/22/2011
Posts: 5462


I find that life is anything but horrific.So pleasant. So meaningful. So much to savor. Most days, I have no time or inclination to lament. --Jim