I realized my husband was developing signs of dementia over the 3 years or so before diagnosis, mentioned it three times during that period to my GP with no response. An incident brought it to a head in November 2005 and I made a GP appointment for both of us, about my husband's "memory problems", which he angrily denied and was very defensive. GP did the usual short test, husband was OK with some questions, not with others and defensively said "Does it matter?" that he did not know the year, month, date although (then) knew the day. Anyway, she referred him to a Memory Clinic where he saw a female specialist (Psychiatrist??) in February 2006. First we were interviewed together, then husband alone, then me alone, then both together again. She told him he had dementia and was "quite far down the line" and was talking about the various drugs she could prescribe later.
I did not think he was as far down the line, the main problem was memory, some confusion at times and mood swings. Also his own personality and personal circumstances played some part in questions she asked him. He did poorly when questioned about our family. Mainly because a) they lived some distance from us (150 miles and over 400 miles)and we did not see them often. Also b) after a divorce two of one daughter's three children had from a young age been living with their father and we saw even less of them. Even without dementia my husbnad would have had difficulty remembering names and ages of six grandchildren he very seldom saw. The two mentioned we have not seen for 7 years, although I am in touch with them as much as is possible via email, TEXT, occasional phone calls.
We waited for a date for a CT scan which eventually came 5 months later in July 2006. Another very long wait for the result from the specialist when we eventually saw her again. Over this period and beyond, the male CPN regularly visited. In fact I actually phoned him to ask about the scan result. I had asked our GP earlier on, she was surprised we had not heard the result and said the CT scan showed "age related" problems. The CPN gave more details, including small vessel damage, calcified carotid arteries, no sign of TIAs.
The second interview with the Memory Clinic specialist was winter 2006, much shorter and she seemed to back peddle her original statement that my husband was quite far down the line. I politely challenged this and she said she had not realised she had implied that. She insisted the vascular dementia was due to numerous TIAs although no signs of them on the CT scan, and no evidence of them. (I realise these can be brief and difficult to detect. Although the late husband of a friend who had dementia had many TIAs) It was a brief meeting, the specialist said she would not be seeing my husband again, I said where do we go from here, she said "to your GP when necessary. Go away and learn as much as you can about dementia, and prepare yourself".
Initially when the CPN visited he would ask some questions, do a lot of writing in his notebook, thought it was "not normal" that my husband got up "about 9am or 9.30am". My husband, then much more with it, replied that most of his working life he had risen at 5am, and said "one of the perks of retirement is I can get up when I chose to do so". Now, when he is further down the line, he will not get up before 11am and often later, trying to get him to do so results in considerable hassle. When he has to be up early for a medical appointment he will NOT be rushed and twice I have had to phone or cancel. Now I try to arrange them for a later time and make sure he is up two hours beforehand.
When the CPN visited he would sometimes do a test, the MMRS ones, all of which Henry got correct. (he would not now) Perhaps because he was relaxed in his own home. Then the CPN would sit in silence. My husband is by nature a quiet man, so both were silent. Later the tests stopped, and he would just sit in silence - and my husband wasn't saying much. Although he used to be chatty with friends he was by nature quiet with people he did not know, not one for small-talk. So both sat in silence. I ended up making small talk conversation, and wondering what the visits were all about. Eventually I simply did not see the point of such visits and said to the CPN that I thought, at that stage in my husband's condition, I did not think his visits necessary. He agreed, we parted amicably, and that was that. Earlier on he had given me the dementia handbook which I read, along with every article I could find online, and various books.
I still do not know what the exact duties of a CPN are..... My husband is much worse now, and especially the last six months. We were never told what stage he was at, and I have found it difficult to judge from what I have read about the various stages of dementia. He seems to have had some symptoms from various stages from the beginning, all worsening now. By far THE worst are rages, aggression foul language, constantly raging at me, cursing me, etc.
I used to speak to my GP about this and how it was affecting me, but now... she suggested anti-depressants, I said no thank you. She often suggested my husband attend the dementia day care centre once a week, I said I had talked about that to him and he totally refused. Also I did not think it would work for him, he would only sit in silence, has no interest in doing anything etc. When seeing the GP about his other health problems (Diabetes Type 2, high BP) she has three times suggested the day centre to him and he has flatly refused. She had mentioned to me that respite could be possible, but having seen how my husband felt about the day centre she realised he would probably resist that even more. He would. His haven is his home, does not want to go out, meet anyone. He thinks he is normal, is in total denial about anything being wrong with him.
Although he always manages to show a better side of himself to the GP, all professionals, other people. When asked by the GP if he still does his daily walks, he says yes. (He used to do hill walking and several miles a day of low level walking) Now he shuffles around the corner and back for his newspaper and that's that. Until a year ago he still had almost daily much shorter walks, but that has stopped . If the GP asks him how he is he replies, smiling (rare) "I'm fine, nothing wrong with me!" Asked about his interests ( now nil) he laughs and says "My wife is my interest!" (he now has no interest whatsoever in me)
Several times the GP has suggested having the CPN resume his visits, saying to me "He could help you, be supportive". I have explained to her what he was like, just sitting saying nothing and me breaking the silence by aimless chit-chat, so what was the point? I said "he is a numpty" Last time she just stopped short of agreeing with me! Mentioned having met him at meetings.
Even if he was different, how could he be helpful or supportive to me? How could I talk about Henry's deterioration and the aggression problems, how tense, stressed I feel, at times at the end of my tether? In front of my husband????
Sorry this is so long if you have read this far! 
Also I have rambled, not well written. Many interruptions. (It has been a very bad day) But back to my original question, bearing in mind that physically my husband does not yet require personal assistance. The only physical problem is ever decreasing mobility, he just drags along, shuffling, and his balance is dodgy.
That question being, what exactly are the duties of a CPN? Thanks for bearing with me.
