1. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Hi All,


    So I've finally got 1 weeks much needed respite.
    Dropped my husband off yesterday PM.


    I should be feeling great, and 'full of beans', but I feel lousy.


    Two of my 'wonderful' (NOT !!) in laws have phoned me
    and suggested that 'we go out for lunch' on two of my days off...


    WHY CAN'T THEY DO THIS WHEN WE ARE BOTH HERE !!


    I promise that I am not being ungreatfull in the slightest.
    They spent the best part of the year AVOIDING us to their best ability, so when their brother is not 'here' .... all of a sudden they 'find' the time to see me...
    Makes me sooo mad.


    My husband looked really sad yesterday when I dropped him off.
    Stayed the best part of 2 hours to settle him in....
    I do feel a little guilty, but I know I need this break.



    I'm feeling particularly low, as my mum is REALLY sick in NZ, and it looks like she may not make it.
    She's been ill for some time, almost 6 weeks.... and recently the doctors have spoken to my sister about the 'possibility' of mum not pulling through this time.

    I've been keeping my husband 'informed' on a day to day basis about 'the latest news' ... and some days he can't even remember that she is in hospital in the first place !!! He then is MAD at me for not telling him.

    How have others coped in telling an AD sufferer the BAD NEWS?
    Should my mum die when he is in respite... should I tell him?
    ..and if so HOW?



    Anyway,
    A week to myself. Luxury .... Peace......
    Try to relex...ish !!



    Another Q?

    What EXACTLY does a CPN do?
    Are they similar to a psychologist (not in qualifications).... but in ...
    do they just chat to you or what?

    Has anyone found them helpful?


    Thanks for letting me ramble on.


    DaisyG
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Daisy,
    CPN's just seem to chat, but I always felt that the more people keeping an eye on mum and dad the better.
    So sorry about your mum. If she does die, I would tell your husband once, but if he does not take it in, try not to let it get to you. Your feeling are what will be most important, and we will be here to try and support you with those.
    As to the in-laws, if you don't want to spend two of the days having lunch, I would just tell them that you are busy - but maybe it would be an opportunity to sit down and talk, and say "I could really do with doing this regularly when.. is at home. He would love to see you as well".
    Enjoy your week!
    Love Helen
     
  3. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi daisyG

    hope your able to enjoy your time to your self, i think youve earned it
    id tell your relatives your busy, but tell them you's love to see them the following week when your hubby's home.
    im so sorry to hear about your mum it must be awfull to be so far away when she's ill.

    as for CPN,S all my mums do is come in a few times a month for a chat, to see how she is, she told me to ring whenever we need her ive tried to ring on some occasions only to get a answer phone with the message we'll get back to you were still waiting!!
    so in my case not much use at all!
    have a lovely week,
    take care xx
     
  4. Bets

    Bets Registered User

    Aug 11, 2005
    100
    South-East London, UK
    I accessed the CPN four years ago, at my request. My GP wanted to know whose idea that was!

    CPN saw my husband (just for a chat) three times and made it clear that her main role was to monitor any dementia-related medication. As he was no longer on anything, didn't hear from her again. I asked for another referral eighteen months ago when I wanted advice about persuading him to go into respite. She thought it better that I discuss it with him. I said I would appreciate a phone call from her every couple of months or so - I don't see why I should always be the one to initiate contact, it makes me feel abandoned - and she did phone a few times. Then she left and her replacement has phoned me twice in seven months.

    So I haven't felt CPN input has been very valuable. I think this another of those areas where the service varies across the country.

    Do enjoy your respite and DON'T feel guilty - it's only one week, after all!

    Bets
     
  5. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Respite

    Hi,

    Family (in laws !!) NEVER EVER have the time to see 'us' as a couple.
    WILL NOT... and NEVER have gone out of their way to do anything.

    I've asked nicely.... even offered lunch etc... NOPE !!, just not having it!!

    Tried 'talking' to them over the years... not interested.
    Basically in BIG denial.

    Talking WILL NOT WORK. I've tried it. Conversation SWIFTLY gets changed.
    They then walk away !!
    WILL NOT TALK AT ALL.


    I find it so sad thet they are going to 'miss out' on these final 'good' (don't like using that word in that context) months/years... however long.... we have....


    Thanks for the replies.


    DaisyG
     
  6. Áine

    Áine Registered User

    Hi Daisy

    Re your last Q - CPNs are nurse trained and can take quite a role in sorting out medication. What else they do sort of varies, I think depending on individuals and how they work - they're sometimes trained in one or other mode of psychological therapy, but not necessarily. I have to say that the CPN sort of involved with my dad has been really good - she's offered me a lot of support and info and been the best person involved in his care for me to think things through with.

    Re your other question about breaking the bad news ....... how awful for you to be anticipating the loss of your mother just as you get a well earned rest through respite. I'd suggest that whatever you do you look after yourself and your own grief first. I had to tell my dad that his brother had died a few weeks ago, and it took me by surprise how much of that he seemed to take in, though he's very confused at other times. The CPN (and group here) helped me sort out what to do.

    I guess at the root of it there's two options: 1) you decide the aZ sufferer is too confused to be able to take it in and don't tell them - but then they're further isolated from family life or 2) you tell them even though it's distressing and they might forget, because at least they're then able to share in family grief and still included. I chose the latter. It was suggested that people should be allowed the opportunity to grieve ONCE for a bereavement ....... but if they then forget it's not helpful to remind them again and again of the loss and have them traumatised and grieving over and over again. Perhaps if there isn't the time limit of a funeral to attend (sorry if the practicalities sound insensitive) you can give yourself time to grieve yourself before sharing it with him.

    I'm so sorry you're going through this - it must be very hard to have your mum so ill and be so far away from her.

    hugs

    Áine
     
  7. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    A word in defence of CPNs. Here in Wiltshire Social Services and Health Services are amalgamated as far as mental health is concerned, and our CPN is therefore the main contact for all forms of help, from respite to assessment to setting up befrienders. When she visits she does indeed chat, but also picks up on any deterioration in condition, etc. And, when yet again details of repeat prescriptions have not made it from consultant to GP she has intervened and got it sorted.

    Re the In Laws - are they husband's relations? If so, could you not say, sweetly, that alas you can't come over while he is in respite so let's fix a day the week after so you can both visit?
     
  8. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Respite

    Hi,

    Thanks for the info on CPN's.
    I alreday 'kind of' knew what they did.
    I guess there are good 'one the ball' ones, ... then others... just like any other job.
    I thought it was worth seeing one, in case they (possibly??) give us some info we don't already know.


    As for family ( IN LAWS ARE ALL HUSBANDS !!! , THEY HAVE ALWAYS IGNORED US PRE STROKE/S AND MID DIAGNOSIS ).
    I believe they are embarrassed and ashamed of him, because of the comments I have heard.

    ISN'T IS STRANGE THAT ALL OF A SUDDEN THEY HAVE THE TIME TO VISIT WHEN HE IS NOT HERE?
    I GAVE UP ON THEM MANY MONTHS AGO.


    Thanks to those who replied.

    DaisyG
     
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #9 Margarita, Jun 13, 2006
    Last edited: Jun 13, 2006
    My mum does not have a CPN never new she could in the first place, so I see a social worker who is great

    Then when I had my brother living with me who has a mental illness up pop a CPN , who I found useless so wanted a social worker , all CPN ever done was to see to my brother medication




    like what Rosaline said


    Hear in hammersmith and Fulham I am told as my mum has Alzheimer's a disease of the Brain she does not have a Mental ilness ,So does not come under the Mental heath team So does not need a CPN ,.........but can have a Dementia nurse .

    I say thank-god as in Hammersmith and Fulham CPN our over work doing to people Job & get help from someone that is called a Key worker only when my brother was not liveing with me did he get help from Key worker while liveing with I was doing the work of the key worker .


    So who do I talk to about mum when I need help is the social worker , I could get information about AD from the dementia nurse ,but what for I find more help on the internet & TP , to Just talk about mum I talk to Socail worker who help me with respite Or I phone OT for any Adoption I need in my home for mum

    I was in your situation during Christmas mum sister dieing in Gibraltar I told mum she was ill, but she did remember, but did not tell her how ill she was , when she died mum was in care home while I was in Gibraltar with untie , till she died care home broke the new over a few days ill getting more ill then dead she was wondering around few night could not sleep , when I got back mum ask me about it , but she still knows she is dead .

    Family don’t talk about Family there own there when there dieing & then wanted to know me. If you need them to of load use them , if you have friends that our more help full phone them & go for a coffee with them & if you don’t fancy either, pamper your self get your hair done , have a massage(sp) do what you please & enjoy your time have fun go bally dancing Joking
     
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    PS



    Like Anie says
    A CPN is a Community Psychiatric Nurse for the mentally ill, mental illness does not kill you like AZ/ Dementia does

    SO it Make me wonder seeing that Dementia nurse deal in AZ / Dementia can refer you to a Consultant for medication for AZ ?dementia .

    Why someone would be referring to a CPN ? or want to see one.? May be that why your doctor said who called for the CPN DaisyG

    I would be careful in what you say to a Community Psychiatric Nurse she may be Assessing your mental heath & writeing every thing down .
     
  11. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi DaisyG

    When I was in the forces we had an inviolable rule that if someone died or was killed during the hours of darkness the next of kin were not informed until the next morning. The thinking was that that night may well be the last good nights sleep they would get for some time.

    In your situation you desperately need your respite, does it matter whether you tell your husband bad news now or in a weeks time? What would you achieve? Have as much rest as you can get now, face the problem next week.

    Hugs

    Dick
     
  12. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Visitors

    When my Mum was in hospital with a broken hip, she did quite well for visitors. Once people realised that her mind was wandering and she was very distressed, they didn't bother any more. I am the only person who visits Mum regularly, in her nursing home. My children will only visit if go with them and Mum's friends seem to have disappeared into the woodwork.
    I'm an only child, so there's no one else to pass the buck to. My husband is supportive, as he manages her money and deals with all the paperwork, but he doesn't like visiting because he doesn't know how to cope with Mum's weird conversations. I just try to manage as best as I can, but it would be nice if I knew some one else visited as well. People say things like, "Oh, I don't think she would remember me, so there's no point in going."
    A couple of people from Church have visited and Mum enjoyed their company. She doesn't have any relations left who keep in contact, apart from a neice who is seriously ill with a liver tumour.
    Mum often lives in the past, and can't understand why her parents and brothers and sister don't come and see her. (they have died) Fortunately I do have two Golden Retrievers who love to visit Nanny (one at a time) and they are sure to be made a fuss of by the other residents as well. I suppose animals just accept people as they are.
     
  13. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Respite

    Update....

    It was the psychologist that said she may refer husband to a CPN ... no explanation why???
    She said that ' her work contract' was not going to be renewed due to NHS budget ....etc.... and a CPN may be useful????


    I KNOW that a CPN is a qualified nurse, but what can they 'actually' acheive.
    (I'm not disrespecting them at all ...)?



    DaisyG
     
  14. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello DaisyG

    Re in-laws [outlaws] in your case, perhaps the time has come to be blunt and tell them that unless they want to visit both of you, you would rather not see them at all.

    Harsh, maybe, but you have enough on your plate trying to get through the days looking out for your husband, without trying to be polite to people who seem to have no interest in helping. You both deserve to be treated better than this.

    Being in denial is fine, but sometimes, in my experience, it is used as an excuse by relatives or friends who either can't, or won't, try to understand the strain others are under.


    Look after yourself this week, be kind to yourself and re-charge those batteries.

    Kathleen
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    If I was you don’t worry about it now ,because your husband in respite , so as she /he seeing him CPN won’t get in touch till your husband back & it does take a while for the referral to be done .

    It it’s still bugging you why not just ring up the department that the CPN work at & ask them
    for my husband ?

    you do have a right to ask that you know , Then at lest it clear your mind on the issue
     
  16. cynron

    cynron Registered User

    Sep 26, 2005
    429
    east sussex
    Social Worker

    Ater 4 years caring for my husband i have finaly been given a SW .I did ask recently only to be told i did not realy need one!!! So i persisted as others have advised us to wail and wring our hands on this site. The out come is i am now finaly able to have a visit from a crossroads carer for one afternoon a week , and my S W has also set up three nights respite in a care home this is for a try out and if it works i can have a whole week and so can go away if i like:D This has only been acheived by my efforts and being PUSHY,so all of you must also stick up for yourselves.I should have done so long ago:cool:

    Love Cynron x x
     
  17. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Well done Cynron!
    Love Helen
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Cynron Good for you ,Well done your so right about haveing to be pushy SS told me it those that shout louder that get heard

    I like to add that you can have 8 weeks in a year , that what my SS worker told me .

    I have never been a person to complain, since looking after mum, but it you don’t they just leave you to it, till you crash, then say oh you are stress you better have respite. So I know how far I can go with looking after mum, before needing a break away from the carer role.

    I must admite I never new how much of one own energy went in to the carering role its so Draining .

    I have always been a giving person to my family & some out side of my family , but people have take advantage of my kind nature & in the last 4 year have lean that people see it as a weakness a venerability in me, so have to be so careful, it’s a same really that even the system is like that .

    I have a thumping eye headache today so maybe only I only understand what I mean, so better stop rumbling on
     

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