URGENT QUESTION RE DEMENTIA Posted November 30, 2017 by admin


URGENT!!!! I am both ashamed and disgusted !! Please share


GPs, Doctors, Consultants, Psychiatrists and Community Psychiatric Nurses, CPN`s


On the 29th Nov 2017 I asked this simple question of FACEBOOK TO ALL my friends all around the world……………………..

The very same day I got these answers within an hour!!!!

All year I have been saying how far we have come ???

I am ashamed to say i thought we had come so far, so to all of the ABOVE


TIME To Get your act together !!!

(I have shortened the names of everybody to hide all identities)



Do we really Want to KNOW the truth about Dementia??

After having a conversation with a very dear friend of mine who recently lost a family member I would like to ask you ALL these questions, as I was asked the same, but first of all, I will write…………………..

“BUT NOBODY TOLD US THAT” (Please remember that statement)

I will start off with just 5 questions and if we get a good response we will ask a few more so here goes

1. When someone you knew was first diagnosed did they discuss “Sundowning ” with you?

2. Again, when first diagnosed did somebody sit down and explain What the future ” may or may not hold”

3. Later on, did anybody explain about LASTING POWER of Attorney with health and well being in CARE with you? Not just Power attorney?

4. Did anybody discuss INCONTINENCE with you?

5. Did anybody warn you that they could change their persona completely due to dementia (Not their fault) and they could become abusive and violent??

So, …… do we all need to know, or want to know the ins and out of everything about dementia? Or do we wait until we are crying ……………….




Answers / Comments


We were told none of the above. Not with dad, mom or hubby.


I found out Mams diagnosis last week after a dr told me on phone as if I knew. No consultants available to see Mam so I had to have the conversation. Taking it at her pace. Not acceptable regardless of me being a nurse.


I was lucky enough to have a great team to help me!


Since my sister has ONLY been diagnosed with MCI so far, none of her doctors have discussed ANY possible futures with us. That’s why you and the Purple Sherpas are so vital for me.


All of the above apart from No 4. Dad is now on palliative/end of life care. 😢. Dementia and cancer.

Norm Mac

Norm Mac Very interesting so far thank you so much xx


None of the above. I have had to spend many hours reading books and researching online and observing to learn anything. It’s exhausting and overwhelming.

Love · Reply · 2 · Yesterday at 15:56


I myself only “remember” a couple of these being discussed with us Norm. My wife may know better but it has been difficult learning about everything and thankfully we found you and the Purple Angels to help. At times I feel so ashamed and embarrassed to be such a burden.


Was offered no information upon diagnosis & now Mum is end of life stage according to doctors, but she still holding on. If I knew then what I know now. Xx


As far as I recollect we usually only hear about these issues after they start occurring and we ask questions.


No to all! Found out more on this page than anywhere xx


Not until further down the line


Hi Norm, none of the above. Not from Mom’s Doctor or any of her carers. We did our own research. XChoose File


No. No. But I largely knew due to family history. No but I drew them up as a qualified lawyer I knew. No. But she had incontinence already and toilet obsession. And no. I find info more helpful to be prepared so as not to panic but that’s just me.


Only thing discussed with my Mom was sundowning but that was AFTER we brought it up to them after doing our own research. She was first diagnosed with Parkinson and we didn’t agree with that. Turned out it was LBD.


You are an inspiration to so many!!!! I am in awe of you!!!! Xxxxx


Hi Norm. Nope, no one told us from the memory clinic. we got told by our (now) social worker and one of my friends who is a carer, especially the sundowning – most of what we learnt was by experience and internet searches. So terribly sad considering how widespread & complex this disease is 🙁 xxx


My specialist prescribed me Aricept and NOTHING – no referral to dementia Australia YOD DAI – I nearly topped myself – 11 creative ways. as I was ‘abused ‘ by a handful of MR’s who didn’t believe my self reporting and said I didn’t have it.


Norm, no one said anything! When John was diagnosed with LBD his doctor just told him to go out and enjoy his life now. Luckily I had researched it before getting the diagnosis so I had some idea. John doesn’t want to know. I have learned so much from this page! And I thank everyone for sharing. You and Curry Whisenhunt has taught me so much. Love you guys!


Norm we were not told any of the above. It was such a lost time for us. Thank you for your input, experience, knowledge and wisdom regarding dementia.


Hi Norm, I had to find it all out for myself from the internet.


No none of these questions


No to every single one Norms . Godsend was other Carers .X

Veronique Murray


No one told me anything .what would happen to me x


No to all. I have been reading up on it. But thanks to you Norm Mac I have learned a lot from you.




3-No but already had one


No,no,no,no,no. And yes I would have wanted to know everything about it sonI could prepare!


Nobody told me nothing, what i know is what I found out for myself……… & that isn’t a lot lol xxxx


To be honest not one of these things were discussed with us at all. We were through in at the deep after a double stroke my mom i would say would be a stage 6 so she basically became double incontinent, needing fed, needing hoisted, and not beinging able to stand never mind walk. Some days she talks a tiny bit and others she sleeps all day but no 2 days are the same.☹☹☹☹


The same with me. No to all questions, but given a ‘book’ for help & knowledge. The BEST info I got was here! & I researched on my own. I think that if the LBD is too bad at the beginning, it would hurt to know too much, but, as some changes start, the…See more


I know all the feelings you describe. God be with you and your precious husband… may He give you both the strength to endure. 🕊❤☝️


No to all the above. We were told Dad had Vascular Dementia and that was it.


Nobody mentioned these things at diagnosis only learnt of them from support groups on line


No, we found all this out as we walked the shocking journey xxx


This seems a shcoking failure. Well done Norm Mac Elaine, Jane and all the angels for all that you are achieving.


No. They didn’t. All I was told was: Buckle your seat belt… it’s going to be a long and bumpy road.


No just go home and try sort it out yourself. No leaflets


No to all the questions. I have learned from my own research, other care givers and Dementia sufferers.


Nobody told us anything in detail. Just had help to apply for the P.O.A’s. Then left to get on with it, doctors don’t even ask how you are getting on, when you see them for anything. 😡


No to it all I did research it myself but we were just told mum had dementia.


No to all


. No

2. No

3. No…See more


Nobody discussed these topics with our family. Only thanks to my job and support from them Sarah Sabater that we have understood about them xxxxx


No doesn’t matter. We just deal on daily basis.



Told nothing just that my mum had dementia. Fortunately I worked in a nursing home and knew what to expect. She actually had Alzheimer’s – found at post-mortem. Worse still I was diagnosed


My answer to all questions is a big fat NO. I was blindsided and the doctor was NO help. Mother was in denial, and he told me he could only talk about her with her present.


No nothing


No to all of those questions 😞😞 Been learning the hard way but learnt so much from some brilliant dementia groups on Facebook


Never told a thing. Everything I know I learned from FB postings & others’ experiences. 😔




I don’t think people are told. I have done some nursing training and am also a support worker. We had a couple of hours training recently that I think would be useful to anyone who has a family member diagnosed

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Nobody told us that, we are all just left to find these things out as they happen, after all, it THE BIG D, it replaces the big C from years gone by. Struggling on. Terri


No one told me any of this. 😩 But I learned real quick!


Nobody told me… I’ve researched and continue to do so. I also find your poetry and posts illuminating, thank you, Norrms ♥


No, to all, my research and this group


No to all questions. I have learned ad I go.


No to all. Not me anyway, maybe my sis. I became a caregiver 6 yrs ago as my job. That’s where I learned. And Teepa Snow. Although my mom had already had it 6 yrs prior, she wasn’t bad yet.


I can’t find where the post is on Norms’ page, and I can’t post direct on there. So here are my answers – No to all the questions.


No. The most information came from his testing as to his skills level in comparison to the norm. No doctor sat down and said this is what you can expect but I was proactive in doing some reading and research; and took caregiver training. He has Alzh…See more


When my husband diagnosed with early onset Alzheimer’s at 56 the consultant just said go away and get yr affairs in place , Poa etc I was terrified, but like other no to all the questions

Terry Ventura

Terry Ventura No to all. Initially, I think the legal aspects need to be in place for later decision making and financially to help your LO. If I had known, my lawyer told me we could have applied for Medi-cal to get mother qualified even though she did not need it …See more


Researched…thats how we learned..


No to all. Research as well. Just discovered Purple Sherpa Group. Seems to be very insightful so far!


Not one person told me any of this. I had to research the disease myself.


No to all.


No to all I’ve trawled the net to get answers to prepare for the future even our GP doesn’t really want to know😮


NO TO ALL….Have to do own research….


No to all questions.


Nobody told us any of that. Answers NO


My daughter Rachel Clampet Roy did all the work for us.

I think it would have been too overwhelming for me to know what this diagnosis meant and what was in store for my husband and me when my sister was diagnosed. There’s no way i could do this without “living only in the moment.”


My answer is no to all 5 questions. We were told to get Barry’s affairs in order. Left the neurologist office absolutely terrified. Everything I’ve learned has been on my own and through the Purple Sherpas.


No to all. I researched everything I know and learn something new every day.


No to everything you listed!


no to all five questions


No one told me anything, I just learned as we go along.


No to all 5 i researched everything myself plus sometimes when we ask certain questions we are told why worry about them now take each day as it comes and deal with those things when they happen.


Nope. Doc handed us a prescription, told us not to let her drive, and gave us a list of Alzheimer’s Association support groups saying “this is going to get harder, you’ll need support.”


some of this was explained some was not


No !!!😔

Norrms here, by the time you reach the bottom of this list i hope your as SHOCKED as i am , so now we have to ask ourselves ??


Where do we go from here ???

PLEASE SHARE xxxxxxxxxxxxxxx

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