I am applauding you with as much as is within me!!! I will be thinking of you as you appear on the radio July 13th to educate the public as to the insidious, catastrophic, grief burdened, aspects of this horrible disease. You have said in your blog that which I have been attempting to do for several years but my listeners just still don't understand or even hear the anguish in my voice and the magnitude of the illness. They equate it with any illlness that has a beginning, middle, and end. They don't understand how Ad permeates the whole family, involving the caregivers in a life they can only endure. It is neverending misery that takes away our dear one and leaves us emotionally. mentally and physically bereft. If only we could pursuade someone intimately involved with a loved one sufffering with AD , who has money and prestige, who woould be willing to be brutally honest and present our stories of agony and sadness in unvarnished truth. True, it is very unpleasant to see someone who is suffering from AD and the resultant role of the spouse especially . It is easier to ignore misery than to become involved.
One of Reagan's sons tried. I heard him on the radio several times during the late stages of his father's disease. But it was too little and too late. This was the older son, so there was some friction between him and Nancy Reagan, but by the end she must have allowed him to "go public" or he just decided to do it anyway.
But it really was too little and too late, and it was a child/parent situation. He didn't live in that house, and it is very possible he hadn't been around for the middle stages. By the time he went public his father didn't know who he was.
When I just give a couple of examples of what my DH is like people are shocked. They truly do see it as a disease of forgetting some names or being mildly confused. I don't sugar coat it when I talk with people. I give them some true life stories of how this disease impacts every aspect of life and how horrible it is.
Good for you Joan.... Try and get it out there just how awful this disease is. all the pills in the world are not giving me back my DH. That commercial you're talking about... For goodness sake, I forget the name of the grandchild I'm talking to or about. That is NOT Alzheimers, and the ad is misleading to say the least. My family doesn't even understand. they just see Dad sleeping all the time, and slightly mixed up. They have no idea just how deep his confusion goes. Thank you Joan, for bringing it to the forefront.
Yes thank you. Unless, a person is faced 24/7 with this disease they have no concept of what it is really like. Even some of my family members have commented that my husband doesn't really seem that bad. For goodness sake the man cannot complete a sentence, doesn't remember is bithdate, address, phone number, SS# or how to write his name. I noticed he never calls me by name, one day I ask him what my name was, finally after about 5-10 minutes he came up with it.
Joan you are so right. My husband is so abusive verbally. What makes it really difficult for me is the disease struck the part of his brain that allows for insight. (Technically term of this loss is anosognosia) He is aware there is a problem but because he can't see it is him he thinks it must be me who is ill. Because of the ups and downs of this disease when people see him on a good day they believe he is right that he is ok and therefore any problems in this marriage are because of me. The stress, frustration, anger and resentment of dealing with someone with a terminal illness and not being aware of it is just beyond belief. His kids choose to listen to him, his sister chooses to listen to him. I have no support except from my family who can see through to the truth. All the bad behaviors, rants, temper tantrums, etc are sucking the life out of me. I don't think I can even think about changing diapers and bathing daily. It is all so thankless. He threatened me with divorce last year and early this year, I wish I had taken him up on it. If he threatens again I will definitely take the opportunity to get out while I still have my health. We have been together for 15 years, it is not I don't have a time investment. I just so miss the wonderful man I married.
Thank you Joan. Everytime I see that commercial I want to throw something at the tv (oops a little repressed anger perhaps?). And you are right, most people have NO IDEA what Alzheimer's really is.
Thank you Joan for taking the opportunity to reach the public. I am always educating people on the disease when I talk with them. The ignorance out there is horrible. Most people think that the disease only goes one route, they don't understand that it depends on how the disease affects the brain that makes the difference.
The Regans live a few miles from us, (a bit ritzier, to say the least), I know the park he would walk in and this is what I wrote in my journal.
"As important as it was for Reagan to go public, I didn’t feel the true Alzheimer’s story was getting out. He’d be all neatly dressed, walking in a nearby park, waving to other strollers, stopping to have his picture taken, looking so hale and hearty--and it was all so misleading. Not that I was blaming anyone. As I said, families do everything possible to shield their loved ones, to keep them looking good and as normal as possible. The problem with Reagan was that the public saw him that way and said, “So that’s Alzheimer’s, how bad can it be?”
Certainly I am not suggesting that the public be allowed to see Reagan doing all I’ve written about Bernie--the things every caregiver knows both men said and did. But if they could have seen what went on in Reagan’s home, the assistance he needed for every little thing, the unrelenting horror for the family, then a truer picture of Alzheimer’s for the public would have emerged. Instead of ‘how bad can it be?’ they’d realize with icy dread what this mysterious and largely hidden scourge ‘can be’. If I went public, maybe we could show a truer picture of what Alzheimer’s really is--it’s not just memory loss. Society has to prepare. I felt like I was screaming from the palisades, yelling at the people playing on the beach, building sand castles, and I couldn’t get them to look up and see the tsunami rising on the horizon."
I did have occasion to speak at UCLA to those in the AD unit. I know it was recorded, but I never saw that & have long since forgotten much of what I said. But I do remember saying that we caregivers really don't care that much if our LO can count backwards--our concerns are changing an entire wet bed at 2am--seeing the man who only wanted to protect me his whole life now raging at me with balled fists and bulging eyes--putting prunes in the dog dish--being unable to change a lightbulb. But nothing changed. After all, they have their scientific & medical jobs to do--and I wouldn't want to stop that.
I do know that the Alz Assn was originally started by 2 women like us--and our men--to help the caregiver, but it was eventually taken over by others who changed its focus. I have read the details, but that's one more thing I've long forgotten. Imagine, tho, if all that money & effort were going into the problems of caregiving. Again, not that I don't want the research to go on, but to be honest, I'm not all that certain the truth about AD, as only we know it, is considered that critical by the AA and I know darn well all that money would not be flowing in to them if it was asked for in the name of CG. The world is full of CG's. What's so special about AD when others are caring for terminal cancer LO, paralized LO's, autistic children--and on and on. But I will say, 'Give 'em hell, Joan, I'm right with you!' We need this!
Thank you!!!!!!!!!! I HATE that commercial. I heard that Elvis Preseley once shot his TV because he didn't like what was on it. I don't own a gun, but I think I would be tempted with this commercial. It is so phoney and disrespectful.
Because each family wants to preserve the image of the afflicted person, i believe thats why we dont see the real picture anywhere disclosed besides here. i dont think i could either, put my DH out there to take videos /fotos of what the real life of AD entails. i believe the Reagans did this as well and she always had him lookin ghis best til the end and thats why i think closed casket so nobody could really see the ravage to the body. Joan your effort is heroic to say the least. full steam ahead and thank you millions times over all you have put into this for all of us. divvi
We may not all be able to do everything Joang does, but if each of us tried to educate some segment of the population, the word would finally get around. As I mentioned earlier, I gave a talk on "Alzheimer's Disease from the Caregivers Point of View" to our local medical staff. Unfortunately, the primary care doctors, who most needed it, were in their offices seeing patients. I plan to give a similar talk to our Rotary Club. If any of you wanted to do something similar, I would suggest taking some of the comments on this website to illustrate the problem. As for the audience, Rotary is always looking for speakers, since most clubs have a speaker every week. Also, Rotarians tend to be the community leaders.
I certainly agree with what you are sayingabout the Reagons, however, I also realize I do the same thing. When we go out, I try to make sure he's appropriately dressed, washed, shaved, etc. Most of the time it's hard to tell, unless you start talking to him. I think we are all guilty of doing that, maybe it's our own pride, not wanting to look like our loved one doesn't receive the best care from us. If i left him to his own devices, he'd look like some homeless guy who hadn't had a bath in a month. My own pride in myself won't allow that.
Part of caregiving is keeping the LO clean and neat. In clean clothes that don't resemble rags. We did the same thing for our kids when they were too little to take care of themselves. And until the very late stages when the body has started to break down there is nothing to see with this disease. It isn't until they open their mouths and can't find the right words, or insert statements into conversations that don't belong (as my husband did yesterday when a neighbor came to visit) that anyone can tell something is wrong.
But that is true about cancer too. A person can look perfectly normal and actually be very sick and even dying in the earlier stages of cancer. We've learned to look for a bald head, but that is a symptom of the therapy and not the disease.
Well i agree that in the early stages they may not show outward signs much of living with the disease. BUT i do think all alzheimers patients develop at some point the empty eyed look, like you can see the trauma and window to their souls if you look in..its a hollowed look and i have seen it on many many victims, including my own DH now even though he is mostly physically still functional that hollow gaze is a dead giveaway in my opinion. divvi
My husband is beginning to show that empty eyed look. But frankly the only reason I'm aware of it is that people here have mentioned it, so when I'm looking at old photos, I can see the difference. Except for most physical symptoms he is at the stage 5/6 border, which is pretty late. The only real physical symptom he has is that he walks very slowly when we are doing things as a couple or as a family.
Now he may be unusual. It is possible that some of our LOs get that look at stage 3 or 4. But even if they do, I doubt if people react to it from across the street.
I always thought eyes were the window to the soul. When I look into the blank eyes of my DH I wonder where he is. Today when visiting DH most every resident was at least up and babbling. DH was lost-no contact at all. Breaks my heart.
I have one photo that shows that empty eye look, I didn't realize it when the photo of us was taken and it's just awful to have it in a permanent record. yesterday we were at my daughter's home overnight, and when we were ready to leave, he was still in his PJ's, and didn't want to be bothered changing. I just drove home with him in his pajamas. what can you do.? you do what you have to.