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Topic Redefining Dementia as a Terminal Illness Go to previous topic Go to next topic Go to higher level

By packerman On 2009.10.20 15:55
Redefining Dementia as a Terminal Illness
TIME MAGAZINE: By Catherine Elton
Wednesday, Oct. 14, 2009

Dementia is most often thought of as a memory disorder, an illness of the aging mind. In its initial stages, that's true memory loss is an early hallmark of dementia. But experts in the field say dementia is more accurately defined as fatal brain failure: a terminal disease, like cancer, that physically kills patients, not simply a mental ailment that accompanies older age.

That distinction is largely unfamiliar both to the general public and within the medical field, yet it is a crucial one when it comes to treatment decisions for end-stage dementia patients. Dr. Greg Sachs at the Indiana University Center for Aging Research says a lack of appreciation of the nature of dementia leads to misguided and often overly aggressive end-stage treatment. Five years ago, Sachs wrote a paper on such barriers to palliative end-of-life care for dementia patients, but he ran into difficulty explaining the findings to the editors of the major medical journal that published it. "The editors kept coming back to me and saying, 'But what do the patients die of? You don't die from dementia.' And I kept saying, 'Yes, they do. That's the whole point of the paper,' " says Sachs.

Now, a large, prospective study to be published in the Oct. 15 issue of the New England Journal of Medicine goes a long way toward identifying the true course of the slow-progressing disease, which affects some 5 million Americans a number that is expected to triple by 2050. "This is the first large study to show what specialists have been arguing for years. Dementia is a terminal illness, and patients warrant palliative care," says Sachs, who wrote an editorial that appears in the same issue of the journal.

The new study followed 323 Boston-area nursing-home residents with advanced dementia for 18 months. These patients were unable to recognize family members, incontinent and unable to get around on their own. Researchers tracked the progression of their disease, complications and survival rates; they also recorded the treatments each patient received as well as their health-care proxies' understanding of advanced dementia and the patient's prognosis. Over the course of the study, 55% of the residents died, with nearly half of those deaths occurring within the first six months of the study. Patients' median survival span was 478 days, a figure comparable with that of terminal-cancer patients. Thirty-one residents suffered major health events, such as seizure, gastrointestinal bleeding, heart attack or stroke, but only in rare cases did those events lead to death. Only seven patients had a major event during the final three months of life. "Our main findings confirmed dementia has high mortality. People in the study didn't have other devastating things happen to them before they died," says the study's lead author, Dr. Susan Mitchell of the Harvard-affiliated Hebrew SeniorLife Institute for Aging Research.

Dementia is not a single illness but a collection or consequence of many, including Parkinson's disease, vascular dementia and Alzheimer's disease (which accounts for some 70% of all dementia cases). In the advanced stages of dementia, it is often impossible to tell which disease the patient had at the outset, as the end result is the same, according to Mitchell's study: a syndrome of symptoms and complications eating problems (86%), pneumonia (41%), difficulty breathing (46%), pain (39%) and fever (53%) caused by brain failure. "Dementia ends up involving much more than just the brain," says Dr. Claudia Kawas, professor of neurology at the University of California, Irvine. "We forget the brain does everything for us controls the heart, the lungs, the gastrointestinal tract, the metabolism."

When those systems fail, patients are often treated aggressively rather than with palliative care. More than 40% of residents who died over the course of the study were sent to the emergency room, hospitalized, tube-fed or given IV nutrition during the last three months of life. These interventions can themselves cause distress and pain while providing, at best, questionable benefit and minimal prolongation of life, experts say. Among the family members who directed these residents' care, however, those who believed that the resident had less than six months to live and understood the nature of advanced dementia were less likely to intervene aggressively than caregivers who lacked such understanding. "Clinicians, patients' families and nursing-home staff need to recognize and treat advanced dementia as a terminal illness requiring palliative care," wrote Sachs in his editorial, noting that patients need not be close to death to warrant pain-relieving treatment.

Experts say part of the reason it is so common to intervene in dementia cases is that the patient, by definition, cannot make medical decisions autonomously, leaving a relative or friend to serve as their health-care proxy. "Family members are much less likely to forgo treatments or let go. An 80-year-old patient will tell you, 'I have lived a good, long life. I have no regrets.' But talk to his 50-year-old son, and he isn't ready. Being the decision maker for someone else is a much harder thing to do," says Sachs, who says the role requires more education than is typically given.

By annwood On 2009.10.20 18:08
Thank you so much for directing us to this study. We all need to understand that true dementia is more than being forgetful.

By dkleinert On 2009.10.21 00:06
Oh, my gosh! What a great article. Thank you so much for this. Finally someone looked beyond the traditional treatment and intrepretation of disease and saw the real foundational cause - the brain controls everything in the body. Without the brain's optimal function, the systems of the body begin to fail also. What a light bulb moment this is for me. THANK You for bringing this to all of us. Is the article larger than the amount you posted - should we go to the library for the entire article?

By LOHENGR1N On 2009.10.21 00:25
Ok, I'm probably going to slip in popularity with this post. First Packerman thanks for this posting. Second Reflection thanks for understanding my point from someone living alone with Parkinson's to make sure the diagnosis is correct. Many things have been brought up here lately on the forum. Questions of why many new posters only post a couple of times then are gone. Mary and dkleinert have queried about how some posts might affect We Parkies who post. They show much sensitivity by such.

We here are or loved ones are in various stages of P.D., and should be sensitive to each and their struggles. We who have been here for awhile feel the pain of those who've lost the battle and loved ones. The cruelness of the disease that just keeps piling on more and more side effects and symptoms never imagined and how this pulls caregivers down, the anger of not being informed. In rushing to aid others We must take into consideration these facts.

We know those wounds still sting, We know when dementia is dx'd the caregivers want to get as much input as possible. However to a new poster? How alarming must that be? They seek guidance, answers, trying to make sense of the world they've just been shoved into. To ignore dementia is not any answer but neither is jumping to worse case scenario. We should temper answers to situations. We are here to help make sense of the world we're in to help ease the burden. Not to scare the BJesus out of some other posters. Even with percentages pointing toward 60% of patients developing dementia that leaves 40% not developing dementia. It's been posted, if your loved one develops it then it's 100% to you. Conversely if your loved one doesn't then it's 0%. Sorry it has to be said! So some 40% worry about what doesn't happen?

Yes we're trying to make safe our friends and charges and for safety sake some may need more "childproof" living changes made. However these should be made not at the sacrifice of ones dignity or independence as much as possible. I've visited friends homes where they were being talked about as if they weren't there as tears rolled down their cheeks. It's a fine balance We have to try to maintain here on the forum and for the most part We do a fine job of it.

YOPD, We worried and newly Dx'd worry about how to tell the children about this disease without undue fear and stress developing. About work, insurance, latter years retirement. Not being able to provide for Our family's. Some if they'll see their grandchildren. College for the Kids. Ever buying that dream house or losing the dream house just bought. We try not to worry right now about a development years or hopefully never down the road.

Dementia is a horror We all agree and it is looming to some. But let Us not rush to assumptions or see it as a marker or milestone in Parkinson's, a do you think it's dementia if such and such is happening? Imagine if You will caregivers how if one forgets, hedges or becomes frustrated with anything, to feel watched (observed) for signs of dementia, the worried look on Your faces, the frowns of concern. Think about the Stress inserted into the mix. Think about time you worry, time we're worrying, this is a progressive disease, think about the time wasted in worry. And worry won't stop it.

Maybe this is just a cycle of the forum as posters are dealing with "D" I don't know but I ask all here to think about finding this forum, Your first visit. Your wonder of why didn't I hear of this site before? That's what this forum is about! Helping across the board! We don't want People coming for help, answers and leaving with a don't bother report for others. A reputation of obsession of dementia and end disease. Dementia as an terminal disease, Yes, but we're having one hell of a time getting Parkinson's recognized as a terminal disease. Let's recognize dementia, address it as how to help the patient and caregivers live easier or better quality of life with it. And get back to Parkinson's Disease and all that may come with it. Let's crusade against Parkinson's Disease, the baggage comes with it.

I know I may have upset some with My words, please believe Me it isn't My intention. The wording could have been better I know forgive Me if I've upset You. I know many Parkinson's Patients some newly diagnosed some in end of disease and too many passed, to lose sight of the forest for the trees. I, We owe it to them to help make the journey lighter and as easy as We can until hopefully there is a cure. I believe we're here on the forum not for denial, not to gloss over Parkinson's, not to cloud the future but to lighten the load as We can. We are all in this together. Take care, best of luck and hang in there.

By Pearly4 On 2009.10.21 06:03
As a FORMER caregiver I came to this formum for CAREGIVERS simply because I needed the truth, the whole unvarnished truth and found I could get that here without being spoonfed by others who were in the same boat. If we tone everything down to the point where it no longer scares someone, we aren't talking about Parkinson's anymore! Parkinson's and dementia are something that we all need to be scared of and in order to CAREGIVE we need to be scared enough to know the truth and deal with it. My mother had Parkinson's and dementia -- it was awful for her and for us. Which was more awful? -- They were both monsters.

Bottom line, we need input from thsoe who have the disease, yes, but its a CAREGIVERS formum and we can't lose sight of that. Give me the truth (albeit with love) or it won't help.

By Emma On 2009.10.21 06:50
Like Pearly4 I want the whole gamut of information. A few years ago I participated in a board that was full of people talking about how blessed they were to be caregivers. Nothing negative was ever mentioned. It made me feel like a witch for having the feelings and concerns that I had and really wasn't helpful at all. I would have been so happy to know what might be coming and to know that I'm not alone (which is how I feel on this board). I don't think it would have been frightening to me in the early stages. Knowledge is power.

As for dementia, it can happen to anyone, not just PD patients, so I found this article very interesting and informative. In my case, my mother and grandmother (opposite sides of the family) both had Alzheimers. My aunt has had it for 10 years. I'm swimming in a polluted gene pool and I know it. Consequently, I talk to my daughter about it openly and often. I want her to know what to look for and what I want if I develop the disease. I'm going to share this article with her.

By karolinakitty On 2009.10.21 07:31
Again Al thanx for you patient and my Jim should get think alike.
Even though Jim has had a rough first year with this disease, he has your attitude.
Dignity...his number 1 request....leave me my dignity, at all cost.
Independence ...number 2 ..... give me as much as i can possibly do.
Depression's not allowed ... he refuses to get unhappy or sad about what is going on inside his body and how it affects his daily life.....

As far as a new caregiver. i am not afraid of the straight forward answers. That's what i prefer. Don't sugarcoat the answers for me.
My mind and emotions work on a different path than most. I would rather have the worst case scenario, so that when things happen, maybe on a smaller scale, i can think to myself, "Boy, that was easy", and go on to the next.
I don't care if it's PD, straight Dementia or whatever else comes along, we all have to deal with "old age" symptoms. What does matter is how we deal with it and how much we let it deal us our lives. Al is by himself and doing quite Jim, don't no how long he'd make it by himself, not because he's the dependent type either, but because the intelligent, analytical and independent aspects have lessened and the more child like qualities have reared their heads.

By LOHENGR1N On 2009.10.21 08:43
Pearly4 said, "Bottom line, we need input from thsoe who have the disease, yes, but its a CAREGIVERS formum and we can't lose sight of that. Give me the truth (albeit with love) or it won't help." Referring to my post.

Ok You're right it is a CAREGIVERS but it also is a Parkinson's Forum first and foremost, I tried to show understanding in my post I stated We're not here to gloss over anything however in healing some may become preoccupied in facets of the disease. I'm not sugarcoating anything. And as a caregiver to myself I believe I have the right to be and post here. Perhaps I should have sugarcoated my post so a few onboard wouldn't feel offended and might extend the civility and understanding back when they answer a post? Take care, best of luck and hang in there. Take care, best of luck and hang in there.

By annwood On 2009.10.21 10:28
I think that we are dealing with two different schools of thought here. One, let me find out these things for myself as they impact my life, and Two, let me have the knowledge that will enable me to make decisions on actions I may have to take in the future. As you have noticed I fall into the later catagory. I have control issues and I need to know what MAY happen so I am prepared. I am angry that I didn't know these possibilities because I feel that my husband and I would have looked at life differently had we known what was ahead. We would possibly have altered our busy lives if we had known he would develop dementia. I am angry at the physicians who failed to tell us what could happen and to this day believe that patients don't need this information. I applaud Dr. Sachs and his efforts to highlight the terrible effects of dementia.

Al, your contributions to this forum are invaluable. I am so happy that you are with us and that you have not developed dementia. I can understand your fears as a patient when you read some of our posts. You are that link to what our loved ones might be feeling as they struggle with this disease. Sometimes that link is critical when a loved one has withdrawn and we just don't know what to do. I hope that you see that many of our loved ones are not as functional as you are.

I think that most (not all) of the participants on this forum are dealing with advanced PD and many of those have dementia as a component. I think that in the earlier stages the individuals are leading normal lives and don't have time to participate in a forum of this nature. I remember attending a PD meeting with my husband shortly after his diagnosis. We were both horrified at the condition of many of the people there and never went back. It was a shock and we both wanted to believe that this would never be the case for us. I believe that our major contribution on this forum is to be there for those people struggling with the problems of PD. When we "argue" it is a combination of fear, frayed nerves, and fatigue. We are like a family and we share some pretty dark secrets so we stay together.

I agree that we need to do everything possible to maintain the person's dignity. I did that for 15 years but the last two years dignity was not an issue. There is no way to preserve dignity when you are running around the yard naked, urinating in the livingroom floor or crying and accusing the house painter of having an affair with your wife. At that point about all you can do is try to keep the person safe. I believe that is the point in Dr. Sachs' article. Is there dignity in dragging them to the hospital, in putting in a feeding tube or prolonging life? His point seemed to be that the more families understood dementia the better able they were to make decisions. I continue to believe that these things need to be discussed before problems arise so the caregiver can make decisions knowing that was the patients wish. It certainly made it easier for me to decline the feeding tube for my husband and to keep him home and comfortable at the end instead of rushing him to the hospital. Note I said easier not easy!

I have to continue my crusade of getting out the information on this forum. At some point you may want me to leave and I will but I will continue to believe that knowledge is power.

By Mary On 2009.10.21 12:39
I like to be informed and prepared so I welcome the information on dementia.

Al, I respect you 100% and took your response to heart. We are blessed to have you as part of this forum. I look to you and Bob for insight past, present and future. You are my Dad's voice to help me understand the shoes he walks in. I also feel sad that you do not have someone that loves you caring for you, Al. I hope you have a wonderful support group of family and friends nearby.

Annwood, I also respect you 100% and hope you never leave this forum. You are a very important part of it with both your experience and medical knowledge. Many come and go but you have stayed - thank God!

My Dad continues to struggle with Parkinson's Disease, as well as other diseases, as if Parkinson's was not enough. I am continually trying to learn about all of the diseases he faces whether by research, medical personnel or others struggling with those same diseases. My Dad is on such a difficult journey and I try to hold his hand through it but the burden is on his shoulders. I love him so very much. Wouldn't it be nice if love was enough to get him through his struggles?

Hugs and blessings to all, Mary

By Pearly4 On 2009.10.21 12:50
Mu apologies if I offended - it was not the intent. I too have requested input from those of you who suffer the disease. It was only meant to point out that perhaps as a FORMER caregiver my viewpoint might differ but that also I believe the information should be geared to the CAREGIVER (that's not an inflammatory capitalization!) not the patient.

By LOHENGR1N On 2009.10.21 13:10
Annwood, I don't believe either of us should leave this forum. Since Parkinson's Disease has intruded into My life I've always advocated first and foremost learning as much as possible about it and it's hideous progression along with possible complications. I know many are less functional than I and many are more functional. Some can probably knock off a post in a few minutes, others not at all. I'll let you in on a little secret folks, to post I labor at the keyboard most times up to an hour (for a couple of paragraphs). I'm not complaining, to Me it's a labor of love, I love still being able to help people even if it's in this limited role.

We all know the isolation (to one degree or another) Parkinson's brings to caregiver and patient alike. Friends stop dropping by, hell even family does. Ann I can relate to the support group thing, many years ago I wasn't ready to see advanced or moderate patients, when I thought I was I called about a group posted in the newspaper, the woman who answered (former caregiver) was hesitant answering questions then she said I'm sorry but I can't think of any other way to put this but the group doesn't meet anymore all the Patients are dead! This is a cruel disease. And Yes Ann you can understand some of our fears from reading posts online here. However We have other fears daily, I'd bet $5 to a donut (inflation adjusted phrase) Almost all patients fear with our first dose of med's in the morning that it won't work as well, that somehow while asleep enough cells have died in our brain that whatever control We had has lessened (as eventually We know it will) and a new set of obstacles must now be faced. Our friend Bob emailed Me asking Me to take over his role of commentary writer awhile ago as it was just too much. We know Bob's position on tough love, He told me he had voice recognition programs installed I warned Him (He might have trouble being understood by the program) when We think We are one up on P.D. it strikes back and steals the voice making it just as hard to communicate as He's alluded to in recent posts. We all struggle with this disease, patients and caregivers, then caregivers have to struggle back alone. It's the pits! I do hope this thread doesn't become a brawl of posts.

I don't think this is a case of two different schools of though but you may be right. Knowledge of potential (or even likely) problems is needed but also it is needed to try to continue life, deal with what's at hand now (which seems in a constant state of flux). We're all in this together, We have to post if something is bothering any of Us, what else can We do? Walk away? No! We're all made of sterner stuff here, we're fighters! Each and everyone of Us here. Sometimes We will react as fighters, crumpled, trembling bodies with spirits like the Valkery. We post, We talk it out and continue on. All I was getting at is lets not lose sight of the Whole and become lost dwelling upon the parts. I think what bothered me most was the brunt of the article was dementia (a part of Parkinson's) being redefined as a terminal disease as We watch funding for research on Parkinson's struggle because it isn't termed terminal. So yes I am upset by that. 1&1/2 hrs on this one folks, time for a break. I'll try to play nice, we're all in this together, disagreements will happen. Take care, best of luck and hang in there.

By LOHENGR1N On 2009.10.21 13:14
No problem Pearl My friend.

By annwood On 2009.10.21 15:49
As usual, Al, you are eliquoent. I can imagine the struggle you go through writing these posts. It is appreciated. I also struggle with why I remain on the forum. Perhaps I'm not doing as well as I think I am? Perhaps I can't let go? Or perhaps, like you, I just want to try to make the burden easier for someone else going through what I did. I am sure that it is doing something for me - being cynical I question pure altruism. There may be a time when I say I don't need this anymore but for now I need you guys. I hate it when we bicker but I don't see this as bickering. Everyone has made good points and we haven't digressed to that nasty point we hit a few months ago. Let us hope that never returns. We are all in a terrible fix and what we aim to do is support.

Your point on Dr. Sachs' article is taken. My take on it was that he was merely discussing dementia regardless of the cause. He mentioned PD and Alheizemers as just two of the predisposing factors. I read it as more of a recognition of the condition and end of life considerations. I agree that PD needs more attention and funding. Why can't we get some of the attention that breast cancer is getting?? I recognize that breast cancer is a horrible disease - I have watched women die of it. BUT, unlike PD breast cancer it is curable much of the time. I just returned from the grocery where I saw pink coke cans, pink batteries, pink milk cartons, etc. We need that type of recognition. We seem to have taken care of erectile dysfuntion in record time. Have you ever seen a drug clear FDA so fast? Now we sit and listen to the comericals through dinner, football and possibly Barney & Friends by now. If you have seen the commercials please explain to me the significance (and practicality) of two bath tubs on the beach?

We are a family here, we will have our differences, we will be insensitive at time but we seem to stay together. Take care.

By Mary On 2009.10.21 15:51
My Dad always tells me that his biggest worry is losing his mind. With all of his physical struggles, I would think that would be his last worry. If his mind were gone, he wouldn't be so aware of the rest.

By Emma On 2009.10.21 16:55
Annwood and Al, Please, please, please do not leave this forum! We need you. You each have a unique perspective and valuable insights to share. I appreciate both of you very much.

By karolinakitty On 2009.10.21 17:22
Sorry Al .. i didn't mean you sugarcoat the answers .. i meant that i would rather have the real truth if it's from you or annwood or whoever.....

Everybody who posts regularly on here posts from the heart, in my opinion. I like that, it helps me understand things better.
I cry
I laugh
I analyze
I agree
I disagree

This forum needs both of you to help us newbies out...

Al i know how hard it is for you to post... Jim has been part of many catfishing websites for many years now. he has had to step back from them, not so much for the pain of doing it, or the the troubles of tremors getting in the way, but from the mind not working so clearly. It takes a long time for him to get thoughts out and he can't be interupted when he is typing...he loses his place and has to start the thought process all over...... so he has let go of those but not the fishing....we still go out regularly...only now i catch most of the fish .......

By LOHENGR1N On 2009.10.21 19:31
karolinakitty. lol, thanks I needed that, I suspect (if Jim reads this I hope He doesn't get mad for Me letting the catfish out of the bucket) He lets you catch most of the fish now to help bolster You up and make You feel better. You know how We fishermen are if We aren't catching the fish We can come up with some novel excuses and always lie about the one that got away. Keep fishing!

By Pick On 2009.10.21 23:50
I'm responding to this thread but IMO it pertains to several threads I've read lately. I think all opinions should be heard openly on this forum. Whether they be from caregivers or patients, those dealing with dementia symptoms or those whose loved ones are cognitively ok.....those w/YOPD or those who develop it later in life.

I see lots of concern for newcomers leaving because supposedly (admit it, no one knows why they don't post a 2nd or 3rd time. Couldn't that just be the nature of the internet? Let's be honest...some of you are making assumptions.) they are overwhelmed when they read the dirty details of PD. Where is the concern for long time posters such as myself who have stopped posting because we feel so bullied everytime we post something negative about Parkinson's Disease and psychosis and dementia? Why do we count less than the newcomers?

Whether its 40% or 60%...whether its r/t to Parkinson's or just old age as mylove is a very siginficant percentage of family's dealing with this phenomenon. Caring for advanced PD patients is challenging, caring for advanced PD patients with severe cognitive impairment is a nightmare. I think there is something very unsavory when people who have never had to face this challenge tell those who are up to their elbows in it to quiet down. This is what I've seen happening on this board for the past year or so and it's a shame.

This is really, really difficult stuff. I've cared for advanced Alzheimer's patients who were otherwise healthy as well as advanced PD patients with relatively mild cognitive impairment. Believe me when I say the advanced Alzheimer's patient was a piece of cake compared to my dad. So who cares if the dementia is PD related or something old people would get anyway???? Cognitive impairment makes everything more difficult and that is what matters.

It's not that I don't sympathize with your fears....but instead of making us your adversaries, why not illiicit our support? Instead of censoring people who want to discuss dementia, why not explore why everyone is so afraid of it? Gosh, is the fear related to issues discussed in the article above? Losing autonomy?? I've read posts here about caregivers locking loved ones in their rooms, physically restraining them, taking over finances. How come we never talk about that?....let me tell you sometimes my dad literally doesn't even know his own name, yet we have not invoked PoA, he pays all the bills himself (with the help of an accountant), and makes many, many, many decisions (many of which infringe upon my right to live a healthy, independent life) which I don't agree with but support anyway. Many of you are so quick to demonize me, yet I have made huge personal sacrifices to support my dad's autonomy...especially after he developed cognitive impairments. I think my dad lives a very dignified life...often at the expense of my own dignity.

Give us a break.

By annwood On 2009.10.22 00:50
Pick, I agree with you. I have spent a fair amount of time today thinking and posting about this.

While I agree that there are people on this forum who are doing well, I believe that the majority have big problems. I don't think most people take the time to subscribe to these boards unless they are having problems. If one were to look back to my very first post over two years ago it is entitled "dementia". I did not know what was happening until I got here. The consensus today seems to be that people want to know everything. If a thread does not pertain to any one person I would assume they just don't read it.

There are people in denial, who want to believe that this disease won't progress and that it won't impact their lives all that much. I was once one of those people. I don't think that we are necessarily scaring them but rather making them face reality.

How can we ever hope to draw attention to this disease and the impact it has on the patient and family if we ourselves won't look at it honestly and openly? Patients and caregivers tend to not get involved until it is too late. I should also mention that the physicians caring for them don't want to acknowledge the seriousness of some of the problems. I remember once when I accompanied my husband to his neurologist's office. He asked the nurse if she saw many people as bad as he was. Her reply was "no, they usually don't come in when they get bad". That pretty much says it all. We hide this dementia aspect and yet so many of you have or will care for someone who develops dementia. It really doesn't matter what the cause is - if it looks like a duck and quacks like a duck it is a duck. Perhaps it is because it is percieved as a mental problem and that has always had negative conotations in our society. I just don't know. There will be very little research or public awarness as long as we bury our heads in the sand.

I have given radio interviews, written articles and spoken on the problems of dementia and caregiver stress. Sometimes people don't like what I have to say (mostly physcians) but I continue to do so. When I speak at PD groups I find that the patients and caregivers are very receptive tomy message - they keep asking me back atleast. We need to shout until we are finally heard.

Pick, I am so sorry if you felt mistreated on this forum. We need you here and I think you probably need us. Caregiving is hard and not too many people understand that. Bravo to you.

By Pearly4 On 2009.10.22 05:31
I third Pick (with AnnWood as a second). Let's live and let live, and just help each other to do so.

By susger8 On 2009.10.22 08:33
I know that when I joined here, I was looking for information on the late stages of the illness, and especially dementia/delerium/cognitive impairment. This is the only place I've found this kind of information. For me, there is a tremendous value in being able to look ahead to prepare for what may be coming -- even if some of the dire events never happen. I remember how I was blindsided after my father's first serious fall, when he was unexpectedly hospitalized with broken bones, and I had to make some very big changes in his living arrangements. I now look back and wish I had been better prepared for that event. I would rather not be in ignorance of what might come. I'd rather know, and prepare.

I do think it's important to be sensitive to other members, and to remember that all of us have different experiences, different lives, and different viewpoints. I really value the input of our members with PD -- it often make me think of things a bit differently when I hear from the "other side" of the caregiver/PWP relationship.

Where would we all be, back in the days before the Internet? Isolated, ill-informed, lonely. This is a tremendous resource, and I'm very grateful to you all.


By Mary On 2009.10.22 10:30
We are all not always going to agree but we all always have the right to express ourselves. This forum is my salvation. I was on another forum and Bob actually referred me to this forum. I truly do not know what I would have done without all of you. You all give your honest replies. A sugar coated reply doesn't do me any good. Thanks so very, very much to all of you who help get me through this difficult journey with my Dad. I wish my Dad was well enough to join a forum for Parkinson's patients. I know it would give him a source of support and comfort that he cannot get any where else. Hugs and blessings, Mary

By caregivermary On 2009.10.22 13:40

Again, I agree with your position on this subject. Recently, I wanted to share some experiences and get advice but it involves dementia and decided to find some other outlet to release my feelings. I also considered e-mailing annwood personally but decided I had imposed on her already.

I was one of those who thought the problems I had read about would not happen to my husb and therefore, didn't do any research. Well, it did happen and thank goodness someone like Annwood was on the forum to immediately respond. I go back every now and then and read all of Annwood's posts during her difficult time and find them extremely helpful. My situation is similar to hers and as the situation here continues to change I consult the previous posts to have a better understanding of what my husb and I are experiencing.

I would like this forum to continue to be very open to all subjects related to Parkinson's.

By annwood On 2009.10.22 17:23
Hi, Caregiver Mary,

Shame on you - you can always email me!! I will help in any way that I can. So sorry that you are going through this - it is terrible, I know.

I believe that we have a majority rule on posting the topics related to dementia. One of the graces of this forum is knowing that there are no taboo subjects.

Stay strong and sane.

By Pick On 2009.10.26 15:27
Thanks for your support, everyone. Annwood is right...I do need you guys and I'm grateful for those of you who are here to listen (or read, I guess) without judgement, without mandates, without making me feel like I'm walking on eggshells every time I have an opinion, etc. etc. Live and let live, as Pearly says. God bless you all!

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