Another Awareness problem

Ed1937

Most of you know that I'm trying to increase awareness of dementia. For those of you who might not, I'll keep this part short. At the present time, I'm working with a reporter for the largest newspaper in our region to get our story out there.

This reporter is a seasoned veteran of reporting. Yesterday he emailed me four articles he had previously written about dementia. They were well written, but they did not communicate the horrors of the disease. It was kind of like "They have been dealing with dementia for 12 years, and now she can't speak or feed herself. But he looks for the bright spots every day, and he finds them." So everything seems to be rosy. Nothing about violence, incontinence, and many other major things that make this journey what it really is. If my story is going to be published, I want the audience to understand, as much as possible, what the caregivers go through on a daily basis. I want them to understand that whatever the diseased person does is not their fault. I want them to understand what dementia is and isn't. I want it to be ugly. Now I feel as though he sent me those previously written articles to let me know what he expects out of me.  Our story will need to be much longer than the others he has written. I want people to understand why being diagnosed might be really important. I want them to know the isolation caregivers feel. I want them to know caregivers need help. I want them to try to understand how hard each loss is. I want them to understand that this disease rips families apart. I feel the need to email him, letting him know what I want, without making him feel that I think he did a poor job of reporting in the past (he did an excellent job), but I don't know how to word it. HELP!!

mommyandme (m&m)

I think if I read the rosy stories while in the depths of dementia caregiving, I would feel hopeless and that I must be doing it wrong.  If I wasn’t involved with dementia I probably wouldn’t read them anyway.  All the feel good stories in the world will not help much and may bring on despair for some caregivers.  Of course we find bright spots but the shadows of who we and our LOs were is the reality. Give me a story with the down and dirty aspects of this disease and I’d probably read it. I watch a lot of true crime though soooo…

I’m not a writer obviously and probably can’t be of much help but I commend you on your efforts.  Thank you. 

Jo C.

I think there would best be a balance in sending out information to the broad community; perhaps the newspaper reporter is concerned about too much negativity and perhaps is looking for balance?  If he/she has no clue that there is an entire range of dementia experiences, then educating that reporter is also, in a way, a win.  (I wonder if the reporter has come to Alzconnected to do some reading and see reality.)

The financial aspect of  dementia care needs can be significant.  One of the dynamics I find heartbreaking are those that are early onset dementia at a very young age; especially when the one with early onset is the major breadwinner of the family and there are young children.  So often, at any age; any savings or assets are plowed through leaving the surviving spouse with nothing for their own aging future and other needs, etc. In this country; this is not a popular cause and so many are left dangling.  (I feel a series of articles coming on if you are up to it.)

However; there is the other side of the coin re relating dementia issues:  that is, not to scare the bejeebers out of those very early in dementia with entireley dreadful input that an inexperienced person may take as gospel that this is what they will absolutely be facing.  (And of course, there are multiple different kinds of dementia of which Alzheimer's is only one type.) While relating one's own experience, it can be explained that not all have the same symptoms, or experiences within a very long range of experiences.

Example:  My mother had a behavioral variant of FTD; her course of illness lasted about nine years, (although we think we missed earlier changes); it was a dreadful, dreadful, very long term, over the moon set of hellish 24 hour dynamics that were relentless and uber stress for much of that time over years. The last year or so, admission to a NH became necessary as the 24 hour hands-on care needs for many physical challenges were so overwhelming, it needed more than could adequately be provided at home. She was in the last year on Hospice service.

Her aged husband developed Alzheimer's Dementia during the course of her disease.    His course was more than twelve years and it is thought it may have been as many as 20 years with earlier stages.  In contrast to my mother, he was a calm, relaxed man with few issues and those were able to be addressed rather simply.   He continued on right until the end of life being able to toilet himself and was continent, if clothes were laid out, he dressed himself, he could self-feed, he showered with mostly standby assistance, and was very easy going . . . his short term memory was greatly compromised as was his judgment and reasoning; he watched favorite TV programs in his recliner as the disease progressed.  He was able to live at home until shortly before his death when he needed hospitalization in Skilled Care for another issue.  He was not on Hospice as he was doing so well.   He died in his 90's from an unrelated cause.  HUGE difference between the two experiences.

My MIL and GMIL each had Alzheimer's Disease.  Those two women eventually needed incontinent wear due to loss of bladder control, but both were calm, serene, and also easily pleased with no acting out in long term behaviors.  Small frustrations were usually quickly and easily managed.  Certainlysome blips along the way, but it was usually something that could be managed without a major kerfuffle. They each did end up in care; they did not die at home as each became a 24 hour ongoing care issue.

Dementia is strange, going from one end of the behavioral spectrum to the other.

Definitely, honesty is the best approach in sharing what your experience was like; the challenges were great and kept growing and you always rose to the challenges.   Perhaps such an article can relate that not every person with dementia develops the same symptoms or even the same behaviors, while honestly relating one's own personal experience.

It would be one way of relating going into an article for the open community and another way of sharing if speaking to nursing students, etc, where the failures of healthcare staff is profound and how it relates to the in-hospital and ER experience.  Volumes could be written regarding that for sure.

I think that you are doing a very good thing, Ed and am glad to hear that you are moving forward in that respect. Let us know what happens with the reporter and hope all goes well.   Next we need to send you and Jim to D.C. to tell it like it is and break down some doors.

J.

loveskitties

Ed, you might be able to get out the points you want if you can convince the reporter to write it as a series on "Caregiving for a dementia patient".

This would allow you to get in the good, the bad and the ugly of this disease which impacts all in the orbit of the patient.

As one who only saw this disease from a more distant relative point of view, I know that it was an eyeopener for me when my Dad was diagnosed.

There is no other disease that I can think of which has such widespread impacts, not just on the patient, but also the caregiver and those that love them.

I hope that you can convince the reporter to go for the real truth of this disease.

Thank you for your efforts...

Ed1937

Thank you, Jo. You always have common sense advice. I think I might ask him to view at least this thread. I'm certainly willing to work with him if he would like to maybe do a series of articles, eventually leading up to the nitty gritty of dementia devastation on both the caregiver and the person afflicted with this disease. Or any other way he might suggest, while still putting emphasis on the effects of this disease on everyone close to the situation. You are probably right about not wanting to scare the public out of reading further. He's the pro, and I'm sure he'll know how to handle it.

Ed1937

Marie, thanks for the post. I didn't know you wrote it until now. Our posts were only a minute apart. I think the more posts we have, the better it will be for both the reporter and me. They will all have something to consider.

Iris L.

Ed, just about all new members post that their LO is in denial.  I get the impression that they are waiting for their LO to come to them and ask for help and allow them to take control.  They need to be aware of when and why they need to step in.  If they understand that anosognosia is real and that it is not denial, I believe they can approach their next steps with a clearer mind.

Iris

harshedbuzz

Mayor Ed-

It's great of you to step forward and drive this. 

I think Jo made some very valid points about the how dementia can be a very different animal depending on diagnosis, personality, resources available and stage of the disease. And I do think that people have enough dreary news in their papers right now so a gritty piece about the horrific realities of dementia might be a hard sell. When I used to do the odd interview on autism, reporters always wanted to talk about the bright quirky kid and never about the one who is nonverbal, aggressive, destructive and not toilet-trained at 15. 

It's also very possible the editor who assigned this person already has an angle they want to use-- maybe they want a human interest piece about a devoted husband who is honoring his wife's memory with a personal awareness campaign. If this is the case, you could give a comprehensive interview and find they cherry-pick the quotes that support the story they already constructed in their minds. 

I think it might help to narrow your scope unless you can push for a series of pieces on different aspects of the disease. There are only so many column-inches available for this sort of story. You say you want to spread awareness. What does that mean to you? Do you want people to understand that things like poor decision making and mood changes could be early signs of dementia? Do you want to put the myth that significant memory loss is a normal part of aging? Do you want people to understand dementia as a terminal illness with stages? Do you want to highlight the challenges caregivers face in dementia care?

HB

Joydean

Ed I agree with all the things you stated you wanted the reporter to know. And yes if i was reading the truth about dementia/Alzheimer’s it would have scared the crap out of me. But I also believe honest truth is so much better than sugar coating it. I would have been scared but I would have known what to expect. I prefer to be prepared for the worst and still hope for better days. These are just my personal opinions. 

I have so much respect for you for what you are trying to do.  

loveskitties

Fear of the unknown is part of being human, and dementia certainly provides circumstances that cannot be predicted.

However, shared knowledge gives each of us something to work with in our own personal situation....from getting all legal paperwork in order (don't have to have a LO with dementia to need to do this), understanding of what is going on with our LO's brain...how it impacts their interaction with others...learning how to cope with situations for the betterment of our LO and ourself.  

It cannot be stressed enough that each and every caregiver needs moral support to get thru the guilt process that this disease brings...whether it is for letting their behavior get on our last nerve, needing to walk away for a period of time to regroup, for having to take on so many more daily responsibilities, for not being able to "fix" them, for considering placing them rather than keeping them home...for wishing it was all over.

Even if the person reading the article is fortunate enough to never have a LO with this disease, it will help them to understand, empathize, and perhaps reach out to someone they know who is dealing with this.

I know for me, each person here who has shared their experiences has brought a bit more light into the darkness of the dementia journey,  It made a big difference in how my family made my dad's journey easier for all of us.

Ed1937

Thank you for all the posts. They help. I guess there's a fine line on just how far you can go, and expect people to read about it. Part of me wants them to know everything about it, so maybe they will find time to help other caregivers who may not have anybody. The ones who live remotely, and cannot find help. The ones who are not financially able to provide things their LO needs, maybe simply Depends or other items. I want people to help other people, but I'm not sure how to get that done without scaring them to death. We've had people come to this site, read through posts, then never return because they can't handle facing a future like that. I want them to know that just because John's wife has done something unimaginable, doesn't mean their LO will get like that. 

Alzheimer's was found over a hundred years ago. I want people to be afraid of the disease to the point where they will pressure congress to do much more than they have so far. I don't think they will do that in mass unless they understand how bad it can be. I want people to learn all about the disease, but I think finding a way to get that done is elusive. Even if we had a series of articles, explaining the progression of the disease, I expect people would stop reading when it got to be more than they're comfortable with. Back to square one.

jfkoc

I agree that it would be very helpful to know the purpose of the article. That way you will have an idea how best to educate the readers. You can do some spoonfeeding.

Could you add what support there is for the caregivers in your area?

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