CPN's whats your experience?

[kate34]

Hi back again after a short while, sorry folks, work etc keeping me busy, in fact as callous as it sounds i am actually working more hours at the moment just to get out the house a bit more; mum thinks i should be mixing with more people my own age etc [plus full time money is much better looking in the bank lol]
Well Dad is more disoriented these days, he is still on Reminyl 12mg per day and hasnt been visited by the CPN's for nigh on two months!! personally i think their input is 'rubbish' to put it politely [sorry this is a bit of a rant!!] but they have failed to fulfill their support role for mum in my view and it has been me that has tested Dad on the MMSE on the past three occasions!! His medication hasnt been properly reviewed for ages and the CPN who has just phoned last week to say she has been off sick for several weeks said 'oh well we can only visit but thats about it'
I was talking to mum last night about a respite break so i think i will give her a couple of days to mull it over; i dont think she is keen. Personally i think in this country..once you reach 65+ no one gives a stuff!

 

[Angela]

Hi Kate and welcome back
When you say dads medication hasnt been reviewed for ages, how long? It USUALLY is reviewed by the consultant at the very least annually, and inbetween by visits form the CPN. The CPN will visit as often as he/she and the consultant deem necessary to ensure all is going as well as can be expected. Im afraid the emphasis is on the family to contact either of them if there is a change or any cause for concern. This does not excuse their "dont care a bit" attitude that you seem to have to contend with.
Thats where ppl like me have been brought in to "fill the gap" that does exist. Ppl like me may come form the Society or within the community mental health team. Do you not know of any support worker that can visit? Ask your team.
At least you know there are some of us that "do give a stuff."

You obviously know all the benefits of having respite, and I wish you luck in convincing Mum to at least try it. In my experience, respite once tried, would never be without it.

 

[Sheila]

CPN?

Hi Kate, what CPN? we/I have not met one for my mum and she has been living with us for the last 2 years. Where do you go to get one then? Mum has a social worker, she is very nice, but of course she can't do anything about medication revues. That seems to be down to me to work out in the long run on my own mostly!
My mum is in respite right now, went this morning as a matter of fact. Tell your mum it will do you all a power of good to just let go of the reins for a while. I went out for the day with my sister in law, we did some girlie things, coffee. shopping, lunch etc. it was wonderful to go out without worrying about not being long etc. This is what your mum needs too. I f you do it fairly regularly, it gets easier. Does your dad go to a day centre, if he does can they take him for respite? The reason I ask is, the first respite mum had, we took her and it was awful leaving her, it could be that leaving him is what's stopping your mum. What we do now is, I arrange the respite to start on a day centre day, so they take her (and her case), she comes back at the end of a week, on a respite day, they bring her home, (with her case), I say, "Had a good time Mum?" she says she can't remember, I put the kettle on and all is well!!!

Love,
She.
XX

 

[kate34]

re: CPNs

Your GP should be able to refer to you a CPN at the very least; and i hope you have better input than us.I have a feeling that owing to the fact that Dad's diagnosis was a 'likely' one of Alzheimer's Disease, the fact that he was a moderate to heavy drinker for the latter part of his life may well be playing a part. I have been doing my own research on the internet, surfing various psychiatric web sites as I am wondering now if he has in fact been mis diagnosed!! We have not seen the scans despite repeat phone calls; getting appointments with the psychiatrist has been largely unsuccessful; we have been put on a waiting list which we have been told is more than 2 months in length... they have not been to visit him [the CPN] for more than 2 months and he hasnt seen the psychiatrist in nearly 2 years!! The lady who does keep in touch if at all is a HCA for the mental health team and is no use whatsoever. When we asked about a short term psychiatric admission for respite we were told that
1] It would serve no use as there is nothing they can do and
2] He is not 'behaving badly' enough!1
Meanwhile we are climbing the walls...Day care is an option but Mum cannot bear to think about Dad sitting in a circle singing songs or chanting rhymes, she says she cant put him through that yet and even I know he would hate it.
REspite care is another option but owing to Dads pension we have been told we would be largely responsible for paying for the costs and at over £300 per week it is prohibiitively expensive.
No disrespect but community care is a dirty word in our house at the moment; however hopefully it is not endemic just yet; i wish you luck!!

 

[kate34]

CPN'S bah!

Lol sorry for previous rant, but it is sooo therapeutic however if you find the posts disagreeable do tell me and i will try and restrain myself lol. With regards to medication, Dad has been on Reminyl for the duration of time since the PET scan he had over 2 years ago, it has been 'reviewed' in the respect that it was stopped for a while, thinking it wasnt working; no alternative was offered in that time and then it was restarted again, he was still drinking alcohol quite frequently then, and now he only has a couple of pints a week when he joins his friends at the golf club, i mean poor chap has to get out a bit at least!! So now he is back on the reminyl again, all we have had is verbal advice on what to give him [in graded doses over a 4 week period] and he has not seen the CPN's since and hasnt seen the psychiatrist in 2 years!!
We have phoned the CPN's on numerous occasions for a visit and they have let us down; the last time they came, they said they were 'passing through' and thought they would 'drop in'!!
I have met other CPN's through the hospital where i work as a nurse and they are so different from the idiots that visit us, I just hope that ours are an unfortunate exception.

 

[Angela]

Ok it does sound as though your case may have slipped through the.... net isnt the right word.... hole!? Lol

FACT Your family is entitled to respite of up to 6 weeks per annum at reduced rate, usually paying aprox £140, so the £300 is wrong.
You would be within your rights to contact the Senior Practioner at the office of the CPN's. This is the person "in charge" of the CPN's who are obviously not forfilling their role within your case. I am somewhat concerned that Dad does not seem to be monitored with any consistentancy, as I said it would be on the family to approach the team with any concerns, but in your case you are are not having any response to the issues you wish to raise.

Its a little brave to say that your Dad may have been mis dianosed and I would love to hear in more depth your reasoning for this. However i should point out that only a very good consultant can diagnose Alzheimer's,after other dementia have been ruled out, and then it could be a duel daignosis.
When you say "short term psychartric admission" Im presuming you mean to that hospital, and this is only the case if there is a change that needs reassessing, so the HCA is probably right.
Of course all that Im typing does only tells you what you dont want to hear.
You could try (if you havent all ready?) contacting social services, who have the duty of care under the community mental health act. to ensure that both your parents are having the most suitable help. If you have done so in the past, tell them there has been a change in Dads behaviour and you want a REassessment of both the care and carers assessments. They will tell you what your parents assessed needs and entitlements are, ie day care, respite, paid carers to the home.
And finally, do you have a voluntary org in your area such as us or crossroads, they too can be a great source of info and... dare I say .... butt kicking.
Hope this little extra helps. let me know

 

[Ruthie]

Hello Kate and Sheila

Sorry to hear of your poor experiences with CPNs. I count myself lucky as my husband's CPN is excellent - always phones me back within a couple of hours if I have a query or a crisis (he's often out visiting when I phone), visits my husband frequently (almost always makes an appointment first although sometimes drops in if he's nearby, which is fine by me).

If it's something he can't deal with he talks to the consultant and phones me back within 24 hours, or arranges for the consultant to visit us at home.

My husband relates really well to him (not the case with everyone these days!) and I regard him as a friendly face who is always there with advice and support when needed.

He is part of the Elderly Mental Health Team in our area, which includes Health Authority staff and Social Services. I can't remember how the contact was first made - I think it originated from my husband's consultant via the Team.

I do hope you can find out how to get allocated a good CPN in your area. In our case he is the main source of help - our local Alzheimer's Society branch has monthly meetings with a talk on various subjects (eg medications, benefits etc), but there isn't a great opportunity for just chatting to other carers and as far as I know there isn't anything in the way of one-to-one advice or help. Perhaps I just haven't asked what's available through the Society.

All best wishes

Ruthie

 

[Sheila]

Respite

Angela, please can I ask, is the 6 weeks respite you mention means tested or is it a fact for everyone with dementia? I ask this because mum has definately been charged much more than this for each of her respites in the last year.
Thanks, and thanks for all your help,
She.
XX

 

[tcarthy]

CPN

My experience of above is mixed - I don't live in England & spent a fortune ringing trying first of all trying to get help - and then trying to get information. At first I was made to feel that I was "annoying" her, but after getting quite "firm" I now can ring. The social workers are another matter!! Mum signed a letter giving me authority to get information, but they never even reply to my emails & I have to resort to ringing again. Any concerns I bring up are either dismissed, or I'm told that it is not within their remit. I really feel that I'm wasting my time contacting them - but don't want to lose contact all together. I brought up the question about what would happen to mum if anything happened to my step-father, who is of course deemed to be next of kin, and was told that I couldn't become an advocate for mum - that if anything did happen, social services would be acting on mum's behalf - I feel that this is wrong as I am her daughter & want to be involved in decisions - anybody any advice on this??

don't worry about having a rant every now & then - I need one myself sometimes & having this site is so helpful - I'm sure my family get sick of listening to me so I find this chat site such a relief!!!!!!
Best wishes

 

[Angela]

Sheila
I THINK it may be means tested, but Im quite sure that it is still at a reduced rate if the person with the illness, (not just dementia) is on either DLA or AA (disability living allowance or attendance allowance.) I will find out on Monday ish and report back.

Theresa Im suprised that you have had more joy with a CPN than a social worker, its usually the other way around, NHS staff are more strict on theor confidentiality. Have you contacted a Mums local AS branch for assistance?

 

[kate34]

thanks for the reply!

Thanks Angela and othes for your support and helpful replies...
Mum has at last agreed and i think, realised herself that she needs a break so I have contacted Social Services [we had a short visit from them earlier this year but at the time it was just to discuss our options] and they are coming to see us on Thursday however imagine my surprise on the phone yesterday to be told our case had been 'closed' :|!!! because we had turned down help earlier this year and anyway that had been more of an introductory session for us anyway to discover to what we were entitled..so the case has now been 're opened' and thus our appointment has been arranged; god how ineffectual are they!! Sorry but i dont feel like giving an inch at the moment lol
I also wondered if anyone had experienced bizarre eating habits among dementia sufferers; while looking through the literature i can find plenty on appetite loss but dad seems to have a mania for food at the moment; especially chocolate, i will research it further myself but he would eat all day if he had the opportunity i am sure, not that we mind a healthy appetite at all but we think a routine for eating meals is a good thing surely.
What are others experiences?
Keep smiling!!

 

[Angela]

Respite charges do vary dramatically between areas, as do allocated annual entitlement.
Frequency - Apparently it is at the discretion of the care manager of your local S/S as to how often you are eligible for respite, and whether the needs of the person for whom you care, can be managed at their home from a package of care from S/S, if not, then your loved one can have respite in a suiatble care home.
Fees - If the person for whom you care recieves Attendance Allowance (AA), or Disability Living Allowance (DLA) for those under the age of 65, then ones respite entitlement IS at a reduced rate.
I have a meeting about respite in afew weeks and hope to have more information for clarification then.
Any specific Q's ask your local Social services, they are there to help??!!

HI Kate
I cannot give you any further response, other than to say over eating is not uncommon, just as over smoking is!
And thats just the carers!

 

[kate34]

progress?

well we had the HCA to see us today to take a blood test for ? thryroid dysfunction??? this was tested before and the results were slightly abnormal, however no action was taken, have since taken dad to GP where his blood results came back as Ok!!
Well we have certainly made our feelings known today and given the poor girl a piece of our minds or two!! We have social services coming out this afternoon to discuss placing Dad in respite so will let you know. He is definitely much worse..the reason i was mentioning Wernickes Encephalopathy and Korsakoff's psychosis was that Dad was a heavy drinker for most of his life and the symptoms of these are very similar to Alzheimers' Disease. We have also been informed that the psychiatrist will be visiting 'some time in November'
The HCA has been off sick and when i asked why no cover had been allocated to keep an eye on the situation she had no reasonable explanation..bloody hell dont these people talk to each other???? Grrrr! lol

 

[Angela]

Kate
My own Mother has Korsikoff and I do know a great deal about it, if you would like to discuss this in further detail i would be happy too.

 

[kate34]

CPN'S what use are they???

AAAAARGGGGHHHH!!!!!!!!!!!!!!
AAh thats better...lol
well we have had the CPN out on emergency call today as Dad was getting more and more agitated and Diazepam wasnt even touching the sides [interestingly the tablet container says on it 'take one when required', a rather dangerous thing to put on a packet of pills that has known addictive qualities and extremelly unsafe if not used correctly!!]
Well we have decided that the temporary respite week is not a good idea after all [due to Dad's expressed determination to leave if he is not happy!!!] So now we await the social worker's arrival and judging by what i have seen before with other people; most social workers are unable to get themselves in order let alone anyone else!!
The CPN who came today has taken over our case, she seemed quite understanding on the phone but when she came to the house i have to say within minutes i was experiencing a certain 'deja vu' ie lots of 'oh dear [tutting' sympathetically; i just said 'well its ok to say oh dear but you dont live with it do you?'
She was somewhat miffed that i have a weekend away planned in december and wanted to know how long i was going for [at which i said oh what i dont get a life either?? or my mother for that matter, doesnt her life matter either? i offered for her to take dad with her, needless to say, she declined...

 

[kate34]

joke of the year!

i did comment to the CPn how ridiculous it was to have to get consent from Dad to read his notes when
1] he is by law mentally incapacitated
2] we have 'power of attorney'
joke or what!!!
who the hell do they think needs to know about his case? us or them? who does he live with? precisely
feedback welcome!

 

[kate34]

risperidone anyone found it useful?

i think after today they might start Dad on Risperidone which being an anti psychotic, stops hallucinations and other dementia related agitation ; the diazepam having limited use, [see earlier posting]
Anyone else used it with their relatives? Wouild be interested to hear experiences, mind you it cant make him any worse than he is already!!
lol [high pitched]

 

[Sheila]

Risperidone

My mum is on it too, has been for over a year now. It seems to help, especially when she starts to go into one in the afternoon, calms her a bit. It doesn't make her more with it or anything, just takes the edge off the agro!! It does cause drowsiness so you need to get the amount right, they will probably moniter your dad for this. Recently mum had another little TIA and since then she has not needed as much as before it.
Love,
She.
XX

 

[kate34]

RESULT at last!!

Hi folks, hope you are all keeping well and not struggling too much in coping with this terrible debilitating illness
Dad is now in the local psychiatric unit awaiting a long term/permanent EMI home bed. Things came to a head a couple of weeks ago and his behaviour just became too bizarre for Mum or I to cope with so i made a couple of ultimatums to the CPN office..I spoke to the HCA on the phone who then spoke to the Consultant and within 2 hours Dad was admitted, voluntarily for assessment and review. We made it quite plain that we would NOT have him back home and that his care needs far exceeded our abilities to provide them and now after a social work assessment, thank God they have at last listened to us and are keeping him in the unit until a bed comes up. Needless to say this is the best for all of us. We have investigated the financial side and thankfully we can afford the contribution to the costs of the home. Dad is receiving excellent care, they checked him over medically and he was found to be OK ie no physical cause for his sudden deterioration [ie infection or constipation etc] so it is definitely the dementia which has progressed rapidly causing his behavioural changes. I went to see him last week and did get a bit teary but i am relieved he is at last getting the specialist care he so badly needs after months of trying to tell the CPN's!!
He is eating well and looks very well cared for, the home itself isvery nice and the staff are dual trained [RGN and RMN] and we think he will be happy there. Mum is a different person without all the stress to cope with and happy with the care he is receiving.
Thanks for your support I will continue to post and if anyone wants to chat via messenger just give me a shout!
Best regards
Kate

 

[Jpr]

In my experience the service varies wildly for both CPNs and Social Services.
there is a 'ring fenced' carers grant to councils but each one decides how it is spent. Some councils choose to fund traditional respite weeks with the families paying about £60, others have instituted a range of other respite measures including day care provisions.

Some areas have Admiral Nurses who are CPNs who are directly responsible for the care and support of carers. They tend to become Admiral nurses because they are passionaltley interested in the subject and have access to better support mechanisms.

Referal to CPNs can be from GP or district nurses, possibly direct from families.

What all these replies tells me is that we should be developing a dementia equivilent of the hospice movement! If you have cancer there are multiple professionals part funded by charity to support you:
Marie Curie who will provide day or night sits as respite,
Macmillan Nurses who are expert in symptom control, and also provide ongoing support to the family, with the option of counselling.
Hospices for symptom control, day care, respite and dying with dignity.

As a district nurse I can confidently suggest to people with cancer and their carers that they should go and see the hospice as it will add to their peace of mind. The same can not be said for people living with dementia. The staff at our local day care centre are brilliant but the enviroment is grim and not at all suitable for people with dementia - I get lost when I visit.

Why don't we have the same levels of therapeutic support for dementia - the course of the illness is so much longer and even move devastating because it relates to mental health.

Both from my own journey through my mother's illness and through my role as District Nurse I strongly feel there is a need for a dementia hospice movement and for the Admiral Nurses to be roled out nationally. We all need the option of support as families living with dementia.