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Have I just made a terrible mistake!?!

Kamiller

Registered User
Sep 17, 2013
16
0
I have unfortunately had a lot of dealings with Dementia in my short 30 years of life. However, until my wonderful nan who is more like a mum to me was diagnosed with Alzheimer's this year, I have never found it harder to deal with than this. I could fill this page with wonderful things to say but words won't be able to convey the love I have for her as I'm sure everyone here will feel the same. Anyway. She had heart failure 6 years ago, has a vitamin b12 deficiency and has had depression at some points throughout her life. I have been researching this and apparently these things separately can lead to misdiagnosis of AD. Now imagine they are combined. Surely this could be the case here!?! I have taken this information to her and she says she feels this could be true also and has already spoken to my (also wonderful grandfather) and Monday she is going to speak to her doctor. Now I am aware we could just be in denial, but I am also aware that this COULD be what's happened I just worry I may have given her false hope. Have I made an awful mistake? How could I have slept at night having this information and not doing anything with it!?! I am so excited by this and can hardly contain myself but I am trying to keep a sensible head on. :-(
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,059
0
Kent
It might be wishful thinking, K, it might be false hope, but you would`t be able to rest if you ignored anything which may prove beneficial to your nan.

I do hope your thoughts and findings are correct.
 

LYN T

Registered User
Aug 30, 2012
6,958
0
Brixham Devon
Hi

Who came to the conclusion that your Nan had AD? Was it a mental health specialist? Do you know what tests were done, or were there any scans.?

As you say there are plenty of things that can appear to be the symptoms of Dementia but I'm sorry to say that these are normally ruled out before a diagnosis is given.

Take care

Lyn T
 

Kamiller

Registered User
Sep 17, 2013
16
0
Thank you. I just don't want to seem naive as I have met many people who are in denial and always felt really sad for them. But I truly feel they are wrong. And I know how this sounds. I really do. But how wonderful if proven wrong.

Thank you for replying. I only discovered this site a couple of days ago and reading yours and many others posts, I have been filled with great comfort xx
 

Kamiller

Registered User
Sep 17, 2013
16
0
Hello Lyn.

No Brain scan was taken. Just doctor tests. Once diagnosed Nan was given Aricept. I don't really know a lot about this drug. Is it the most commonly used do you know? xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,059
0
Kent
Aricept and Reminyl are the two most commonly used drugs prescribed for people with Alzheimer`s .
 

Saffie

Registered User
Mar 26, 2011
22,516
0
Near Southampton
If your Nan hasn't been tested for vitamin B12 deficiency and depression, I would certainly say that this needs to be done even if just for everyone's peace of mind. These were checked by our GP before my husband was diagnosed by the consultant psychiatrist as having vascular dementia though he never had a scan.
 

Noorza

Registered User
Jun 8, 2012
6,542
0
I really don't know, I hope you are right and it's always best to get these things checked out. They are normally very thorough before diagnosis but no one is 100 percent perfect. Mum's heart problems have led to her dementia (vascular) but only by getting your nan checked out will you know for sure.
 

Kamiller

Registered User
Sep 17, 2013
16
0
She has had the deficiency for about 20 years confirmed. Heart failure, confirmed and has been on depression tablets pretty much forever. It's interesting to know they test for this as a part of the testing process. Could mean they took it into account already :-(
 

Noorza

Registered User
Jun 8, 2012
6,542
0
She has had the deficiency for about 20 years confirmed. Heart failure, confirmed and has been on depression tablets pretty much forever. It's interesting to know they test for this as a part of the testing process. Could mean they took it into account already :-(

I am sorry to say that heart failure is a cause of vascular dementia, mum started having her heart attacks 20 years ago, the problems started a couple of years ago with moods and memory. If the heart is not feeding enough oxygen to the brain the small vessels in the brain can become damaged.

There is no harm at all in getting a second opinion.

Don't worry you won't have hurt anyone, the worst thing is that you've given yourself false hope if you're wrong, you could be right. I think you are a loving person to have taken the effort to research on behalf of your nan.
 

Kamiller

Registered User
Sep 17, 2013
16
0
Maybe I've made it worse for her. What if she now has to hear it twice after taking it so well and being so strong the first time round!?! We are very realistic and not at all trying to ignore or disprove the obvious but they can get it wrong.

I can see how this makes me look naive and like I'm clutching at straws. I'm going to tone it down a bit. And just see what they say. I hope I've not made her sad
:-(

She took it so well. She's such a tough cookie. xx

Thank you everyone. xx
 

Eternity

Registered User
Jul 17, 2013
226
0
London
I hope the best outcome for your nan.

Is anyone going to the doctor on Monday with your nan? You say in your first post 'she is going' - could someone go with her to make sure all the right questions are asked?
 

Kamiller

Registered User
Sep 17, 2013
16
0
My Nan had a fall and has broken her hip so she is in hospital. I suggested talking to one of the doctors on Monday and she has promised me she will. I spoke to her three times today to make her promise ;-)
My grandad will be there too as I'll be at work. He is always by her side and will certainly be at any appointment she may have. If not, I would be there with bells on. I don't want to butt in with it all as they cope so well together but I know only to well the way this goes and I worry he will need so much support and not ask. Do you think I may have made things worse? I have heard so many people get cross when diagnosed and no one wants to help them disprove the doctors. But then in this case, there's me, possibly giving Nan false hope. Have I been totally selfish! Maybe I should have gone and spoken to my doctor and for advice first? I just got so excited and wanted her to know I wasn't about to give up on her. Whatever the outcome, and whatever this awful disease brings, I will be there - whether they like it or not ;-) I just don't want to cause her to have to hear it all over again.

Everyone here is so supportive when you have so much heartache going on in your own worlds xx
 

Eternity

Registered User
Jul 17, 2013
226
0
London
You haven't done the wrong thing. They are very fortunate to have such a loving and caring grandchild who wants to be involved. That is truly a beautiful thing.

I'm sure the doctors are used to people asking them the "are you sure, have you checked for this/that" questions. It may also give the doctors something else to check or the doctors can provide clear detail to your grandparents as to why they've reached the diagnosis they have

I'm sure it will all go well

x
 

Noorza

Registered User
Jun 8, 2012
6,542
0
Please don't beat yourself up because you care. They are lucky to have you. Everyone accepts the diagnosis differently and we all suffer from carer guilt. That's what you are sharing with us now, trying to do the right thing while fearing we've done the wrong thing.

We've all done it. You can only do your best and that's what you are doing. You could be right the only way to know is to ask the tough questions.

What I tend to do now, is to put the problems and issues to a thread on here and take on the advice from other posters. We all handle things differently so I just pick and chose the ones I think would work for me and my mum.
 

Kamiller

Registered User
Sep 17, 2013
16
0
Thank you for both of your lovely replies. Feeling a little silly about being so positive. I know how it sounded. But I'm not ready to give up yet, will hopefully know later. I know I'm prepared either way.

I have a feeling in going to be coming on here for quite a while yet. And I look forward to hopefully being able to offer others support if and where possible. It's funny how I've never been one to come on this sort of thing. And yet, the last fews days I've been saying, well on this forum this and on this forum that. ;-)

Hope everyone's well xx
 

Fed Up

Registered User
Aug 4, 2012
464
0
I hate to be pessimistic and I hope you are right but the internet has in some ways made doctors of us all, so much info at the click of a mouse. The experience I have is that an experienced doctor does'nt really need tests very often they know what is wrong and do their very best; so I'd say be careful if an experienced doctor has said that is what he thinks it is probably worth enquiring about, but don't be upset if it is a false premix. Especially if drugs have been administered and are working as your nan needs reminding it sounds like she is forgetful and we know that is one of the signs.

Lots of things can it is believed cause Dementia old age is the most common, my mums (87) heart is fine, never had any heart problems ever, but she has Osteoporosis and suffered from Paranoid Psychosis, the Dementia as her memory failed took the Paranoia away, it seems to be common that people who are outgoing become withdrawn and the frightened become less afraid as though its a disease of opposites.

I have no idea whether your right or wrong but please be careful, as if your nan now refuses to take tablets because she does'nt trust the dr than more harm could occur as trust is one of the main things we seek with our doctors and its not often they are wrong. Many best wishes to you both.
 

nita

Registered User
Dec 30, 2011
2,410
0
Essex
If you say your grandmother has had vitamin B12 deficiency for 20 years, I presume it is being treated? But she might need to be retested to make sure that the levels are OK. You probably know that this deficiency can lead to loss of memory but if she is on the correct treatment then that will not be the case. My uncle had injections for B12 deficiency but it didn't make any difference to his memory loss, unfortunately.

I can understand you getting excited at the prospect of there being another cause for her problems. I too was like this at the start. For a long time, I thought my mother's continuous UTIs were the cause of her short term memory loss and confusion. Eventually, I had to accept it was Alzheimer's.
 

Kamiller

Registered User
Sep 17, 2013
16
0
I know, I would totally hate to be a doctor today. A mild headache can go from a headache to a brain rumour within one article :-( so I totally know what you mean.

She isn't a dreamer. She is totally grounded (believe it or not so am I) but she was a nurse so is clearly trying to see this isn't the case as she too knows what's coming. She is realistic about the whole thing. But she hasn't much faith in the diagnosis now especially as she has been in hospital for 8 nights, and has not been given her correct meds even one night! And the Aricept has only been given to her on ONE occasion. As for her injection, I actually saw them mess that up this evening and ASK HER if she has it as they were not sure. All this aside. She doesn't complain and will take what they give her. She trusts totally in what they are giving her, even if Grandad and I are sat there completely aghast!!

I know how all this sounds. I really do.
Deep down I think I know they have it right, but I just want one more little push to check. And then we will whole heartlessly accept and deal with what's to come.

This is why I love this forum. People are so honest and want to help. No 'yes people' people telling you what they think you want to hear.

Thank you :)
 

Fed Up

Registered User
Aug 4, 2012
464
0
Dear Kamiller
I truly feel for you, and know how hard it is, so do push one last time but stay strong and hospitals these days seem to be so dangerous (ours is its in Special Measurers at last someone is looking at it) I know where your coming from and I've got relatives in Germany who are nurses and can't believe how short staffed our hospital are and have wards and still without a swimming pool. My uncle had a mild heart attack there the dr comes to you by helicopter, he decides which hospital (Frankfurt) you go with him and treatment is straight away. Three weeks standard stay making sure medications are correct etc, then no you don't go home but to a Spa for therapy!!! Here 3 days in the ---- if your lucky. So my mum went in perfectly capable of using a loo and walking to it with her frame, but frame disappeared and no one had timre to help her so they used a pad. Her dignity was forgotten and I'm sure it did'nt help her mental health and the level of boredom and in a smelly dirty mixed ward as well. But at least she had a bed I suppose A bit of a hobby horse but but I really think we must demand more compassion and its not about money the amount of clerical staff is unbelievable and why computers not used more and paper still be carried in huge bundles is beyond all reason.