A little bit upset and a lot cross

Given the hours wasted on meetings in hospitals, to discuss what they call 'the patient journey' this type of thing is unforgivable, however, having had to sit through those meetings I can see that very little changes.

I am sorry that this has been distressing for you.

Aepgirl. I have dealt with it and still am ..for almost 10 years.

I'm more shocked that this is the first follow-up appoinment offered by the GP. I hope you're receiving all the help to which he's entitled, both medical and financial.

Perhaps you could have explained that in your first post Nan and I would have understood that you were only offering your opinion knowing what my situation was as you know all about it.I am sorry that you have been in the situation for so long, you have my admiration.

My friend is struggling with her h who is in his sixties took early retirement and never did anything, she is always busy has her own business and works long hours. As he didn't get himself a little part time job, he got bored and started drinking lost his car licence for a year and has been diagnosed with early stages of dementia but she thinks it could be depression. I agree with her he goes to a memory clinic.

An inside letter box you can lock?

To tell someone they are on any "register" is clumsy in the extreme.
I would really want to complain about how insensitive that is. Whoever wrote that needs a lesson in tactful letter writing.

How about "Dear Mr Sixty we would like to see you and your partner again at our memory clinic on" whatever.

(Well he's not going to get there without you.)

I have seen some pretty bad clerical produced letters in social services at times.

Probably not a good way to communicate a diagnosis ...but on the other hand, my OH has vascular dementia and Parkinons and a host of other things (he is 84) ....I always go to the doc with him, and she explains thing to him but he does not understand ...so I have to shout out what she is saying (he is also quite deaf) ...he has no concept of the illnesses he suffers from ,,,and refuses to discuss the consequences and long term problems .....he also refused a hearing aid, a mobility aid and several other things ! He is in denial there is anything wrong ....so trying to address his problems is difficult (walking with difficulty, falling over frequently and injuring himself ! not wanting to eat ....the list is endless !) I told the doc all this, and his daughter,( in case they think he is trying to kill himself and I am not trying to stop him !) ...the doctor said let him do what he wants (as in climb ladders, use power tools, cut trees ....aargh ! I despair !) ......and his daughter said I know my dad and you will never stop him and I understand !......so I am relieved that at least no one will blame me ! I do try to stop him, though, without success ! As in your case, he opens mail, but doesn't understand what it is and has difficulty reading it anyway ....a lot of it, as we live in France, is obviously in French ...which he never understood anyway !! all I do is look through the paper recylcing bin before throwing it away just in case ...I have often retrieved bills bank statements etc all bill are paid by bank prelevement, so they would be paid in any case, but I worry about account numbers etc being stolen ....but I am like that !!!! c'est la vie ! Good luck ....we need it !!

Annsixty, I don't think you were being unreasonable at all. Am glad DH was not upset but very sorry you were. My brother went down the dementia path and it was very difficult so you have all my sympathy.

Even though dementia comes in many forms and many different types of behaviour. I think to understand what it is like to live with a person with dementia you need to experience it. I, thank heavens, only did it for a couple of months. I know many of you have done it for years, but even though I had worked with people with mild dementia before, it was only when I became carer for first one person, with dementia and then, when his wife came out of hospital, two people with dementia that the every day difficulties, stratagems and negotiating that goes into caring for people with the illness really struck home.

Is there anything that he still enjoys? Tv ,music ,singing, going out for a car ride? And when you go to this meeting , I suggest you ask for all the help possible, really let them know how difficult it is,. Perhaps talk to them on your own so you don't upset your husband.
Just a thought!

annsixty You are not alone.Easy for those who have not experienced what you have with their unsolicited advice in how you should feel or deal with it. Been there and had it not been for Adult Social Care I could not have coped when DH vascular dementia grew steadily worse.
They arranged respite which gave me a break .I agree with Aepgirl and to recharge your batteries try and have some time on your own.

When my DD aged 16 was about to have chemo, they told her that it would affect her fertility. She was on her own (as she was 16) without her parents knowing. That was 24 yrs ago before special teenage wards so I hope it is done differently now. She only lived for 40 days after diagnosis (AML) so we never found out if fertility was compromised.

That is so sad Gadabout Gran. No words.

So sorry Gadaboutgran although many years ago I am sure you live with it everyday. Like you I hope things have changed for the better.

I'm really sorry you have been so upset Ann. I think this is about your own reaction to your husband's dementia and not his. I understand this well. I looked after my husband for 15 years before he died of a rare early-onset dementia. I too was hijacked from time to time by such things, but actually, as others have pointed out, your GP has done nothing wrong. Dementia is the name of the disease he has got. I am so sorry that the stigma is still around. People can't help having dementia and it is nothing to be ashamed of. I'm one of thousands of Dementia Champions for the Alzheimer's Society and every month or so I have been running a one-hour Dementia Friends Information session designed by the Alz Soc. to help people become better informed about the dementias and the little ways everyone can help. Over 2 million people in England and Wales have attended a Dementia Friends session. If everyone attended the one hour Dementia Friends sessions, available free all over the country, then the stigma would be very much less, and people would realise that a diagnosis of dementia does not mean their life is over and would not catastrophize about being immediately at end-stage. Another point brought out by this thread is the notion of people with dementia being 'in denial' - an old-fashioned Freudian notion. Many people with dementia are not 'in denial', they are unable to recognise their impairments, they are experiencing a form of agnosia. It is beyond their volition to recognise the condition. Ann, you might want to contact a dementia counsellor at your local Alzheimer's Society for a chat about your situation. For anyone that wants to attend a Dementia Friends Information session, find a local session at www.dementiafriends.org.uk Very best wishes in your journey.

Difficult one this. Ethically, any medical condition should be ldiscussed with the patient, unless there has been a request, by the patient, for it to be discussed with another party.
I do understand that seeing something like that in black and white would give you a jolt but, I do not understand why the condition was not discussed with your husband when the diagnosis was made, or was it and he has forgotten?

Yes, I think this very insensitive, if I were you I would have a word with G.P.

Hard to pass judgement Nemosmum but the impression I get is that annsixty knows the exact score with her DH's dementia having lived with it and its impact on her life for 4 years since diagnosis (and probably longer)
I may be wrong and I don't doubt your sincerity, but the notion of "stigma" doesn't come into it. While I admit this may be the case, especially where a diagnosis is recent, I have to say I think you have misjudged the situation and hope Annsixty is not hurt by the misunderstanding.

PS NemosMum I realise in the light of your own experience that you too know exactly what you are talking about and apologise for my unintended insensitivity .