1. danielle

    danielle Registered User

    Apr 9, 2005
    26
    Hi
    As you will know from my previous posts i was feeling sorry for myself and decided to take time out.... :rolleyes:
    This included trying to banish all thoughts related to uncle tom out of my mind just for a couple of days
    I felt i needed to get some normality back in my life for my partner and kids
    Reality hit me when i picked kids up from school and youngest one aged 7 (i have 5) informed me that he had told the teacher that i could not go to parents night as i would be visiting Uncle Tom....
    Reality Check..... :eek:
    I am ashamed to admit that i have not been able to stick to my descision..
    I never visited Uncle Tom for 2 days but.... phoned twice each day... and he was constantly in my thoughts. I was told by staff he was fine and settled.
    I couldnt rest...own peace of mind..
    Decided to visit today... Took my dad with me just to give mum a couple of hours break....(dad in wheelchair)
    I was greeted not by uncle tom but......a flying plastic beaker which just missed my head...and the words "im freezing why didnt you bring me a blanket" and "get out....you have signed papers to keep me in prison"
    Once again i was gutted and guilt took over for a while and i thought he was punishing me for not visiting but...
    Through the info and advice i have recieved on here i managed to convince myself that this was not my normal Uncle Tom talking....
    I spoke to a nurse who told me that Uncle Tom had been "naughty" for the past couple of days..... he had been wandering and shouting and had even got into someone else's bed and refused to get out.
    NAUGHTY.....for gods sake he is 74 years old not a baby... :mad:
    I was not impressed,but was even more distraught when i turned to speak to my dad and was horrified to see that tears were pouring down his cheeks...
    I have never seen my dad cry in 39 years.... reality check for dad i think...he has alway been of the opinion kick him up the backside and get something done....
    He swore that there was nothing wrong with Uncle Tom only a bit of depression...
    Dad was gobsmacked that Uncle Tom even raised his voice, as uncle tom was the most placid person ever.
    I since found out that the doctor has declared Uncle Tom fit for discharge.. as they feel his chest infection has cleared up... i havnt yet met with s/s
    To me this seems stupid as he was fine a few days ago we even had a "half" sensible conversation but he is now showing signs of chest infection reaccuring...(confusion) etc....
    Im confused....im of the opinion he is "hard work" for the staff..... am i paranoid ?
    Anyway they have said that Uncle Tom will be transfered to discharge ward tommorow and then to a EMI home
    What is an EMI home?
    Sorry to sound thick but was so stressed never asked....
    It seems that this is never ending and its playing havoc with my head...
    one day fine ....next day not...i really dont know what to expect when i visit.
    Sorry to whinge once again but feel totally unheard - confused and gutted. :eek:
    Take care Danni x
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hey there Danni, you're not whinging!

    The situation you are in is one of the bad ones because it combines guilt that we should not feel, pain in seeing a loved one in torment, frustration at not being able to do much, anger at the other people for not looking after him as well as we all would wish, anger at ourselves for the same thing, etc, etc, etc

    I thought that the term EMI had been superseded these days. It stands for "Elderly Mentally Infirm", so should be a place where they specialise only in people with dementia and other such conditions. Whether that automatically means the place is secure, I don't know - worth checking that the doors are controlled, if he is to go there.

    Hospitals do like to get people with dementia off their hands asap as they don't understand the condition and are not geared up for it. Try to ensure that he really is better and able to be moved before that happens. They do have responsibilities, and shouldn't just discharge him.

    Best wishes
     
  3. janey

    janey Registered User

    Jun 29, 2004
    86
    Hi Danni
    Brucie is right to say that EMI units have been superseded, but confusingly most SS and NHS staff seem to still call them that! It refers (in my own experience) to Care Homes which are registered to look after people over 65 years old who have dementia. If they are, there will be a locked unit within the home for these people. You can find out which care homes in your area have this registration by visiting the 'Commission for Social Care Inspection' website at
    http://www.csci.org.uk/
    You can search by county or by postcode. When you look up a particular home in their directory, under 'Type of Care' it will say if the home is registered to care for people with dementia. You can also download Inspection Reports for each home (free). By the way, apparently there is no longer any such thing as a 'nursing home' either - they are now all 'Care Homes'. Hope this helps.
    Its an awful time for you and your family - here is a big e-hug to give you strength ()
     
  4. danielle

    danielle Registered User

    Apr 9, 2005
    26
    Danielle

    Brucie and Janey
    Thank you so much for info and kind words will let you know what happens ;) Just off to visit
    Take care
    Danni x
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Danni, try not to worry, an EMI unit is probably the best thing really. It is a safe environment for him, they are secure, so the patients can wander about as they wish within the unit, often the garden as well. But they are unable to leave the facility and become lost. The staff there will be trained in the needs of dementia patients so will be able to cope better. You may find he settles more there, but it will take time. Love She. XX
     
  6. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Janie
    does this now mean that care homes are as nursing homes used to be with care and nursing staff?
    Are there now no homes with just care staff?
    Regards
    Norman :confused:
     
  7. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear danielle, so sorry for yor imeditate dilemma, Am typing this blind as I am so upset. WHERE IS THE HELP PROMISED. I feel so alone, I want to comfort you, but am deling with issues of my own. My thought, and lov are with you, Connie
     
  8. danielle

    danielle Registered User

    Apr 9, 2005
    26
    danielle

    She..
    Many thanks once again you always seem to say the right things...
    I have been to the hospital tonight and uncle tom seems to be more settled. just asking to come home all the time..
    He is still on the same ward as there is not a bed available on the discharge ward yet. but was told that it should be in the next few days.I have spoken to a nurse and asked if i could view the home before he has to go and would it be long or short term.. was told that she didnt have a clue....
    I feel the only thing for it is to take it day by day as im now starting to worry about things that havent even happened yet.
    Thanks again
    Danni x
     
  9. danielle

    danielle Registered User

    Apr 9, 2005
    26
    danielle

    Connie
    Thank you for your kind words and thoughts... I feel that at times i am so alone in dealing with Uncle Toms problems and then...
    I recieved your message and realised that we are all in the same boat so to speak
    I feel humbled that you found the time and patience to reply to my message especially as you are having issues and problems of your own...
    I t has made me look at my situation once again and realise that im not alone, and there are people out there who are in a worse situation than me.
    Many thanks
    Your kind words really do help
    Take care
    Danni x
     
  10. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Danni,

    I've read your posts over the last few weeks and you really have been on a rollercoaster. Your family, and your Uncle Tom in particular, are so lucky to have you!

    I totally agree with you about the use of the term "naughty" to describe the actions of someone with dementia being completely inappropriate and shows a lack of undertsanding and respect.

    It is good that your uncle's latest chest infection looks like it has cleared up. The process of moving from hospital care into some type of care home can be tricky one and it's important to know all of your uncle's entitlements and be able to choose a care home that meets his needs (and your family's expectations - even on a practical level like travelling distance).

    Technically, the hospital has a duty to assess your uncle for entitlement to NHS Continuing Care (where the NHS would pay for all his care costs - see the Alzheimer's Soc. factsheets, plus search TP threads) before an assessment by social services. Also, I know some councils are in the process of implementing a Single Assessment Process (SAP - if only I had a pound for every acronym I've learned in the last few months) where medical and social service do one comprehensive assessment.

    Janey gave you the link for the Commission for Social Care Inspection. I have just started to investigate care options for my father-in-law so I have been using the site a lot. The advanced search for care homes is probably the most helpful:
    Advanced Care Home Search

    It lets you search for homes with or without full-time nursing staff and also to specify dementia care. The results can be a bit misleading as some of the homes may only be licensed to care for existing residents who went on to develop dementia and aren't actually licensed to take new patients with dementia.

    Don't feel like you're being rushed into any decisions regarding a care home. It can take time to go round and visit your top choices, and several of them may have waiting lists.

    Take care,

    Sandy
     
  11. danielle

    danielle Registered User

    Apr 9, 2005
    26
    Uncle Tom......

    Thanks Sandy,
    Your reply to my message really means a lot.
    At present im trying to do what i think is for the best without involving mum and dad.. There is no one else... Uncle Toms so called "other"members of family dissapeared long ago...
    I feel that i dont want to put any more pressure on mum and dad than i have to as they have prob's of their own. but on the other hand i reckon dad knows Tom better than any one, and would know whats best... or am i talking about my old uncle Tom not the new one....who no one seems to know ?
    I am going to research all info i have recieved today and many thanks to you all...
    I think its going to take me a while to get my head round it all though so please dont think ive blanked all the info ive been given im just trying to get it right...So as when im faced with a "professional" i seem to know what im on about...even though i aint gotta clue. :confused:
    Take care
    Danni x
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I suppose the term 'naughty' covers many things and someone might think they were being softer in tone than saying 'aggressive', 'troublesome', 'destructive', 'upset', 'incontinent', etc.

    They should learn that we have had to become very matter-of-fact about our loved ones. Soft words are all very well, but it is not a soft illness, and 'naughty' is most commonly used for children and - while our loved ones may seem to be regressing that way - it has negative connotations for us.

    If they told me that Jan had been 'a blooming pest, destroying everything in her path and laying waste the care staff' then at least I'd have an idea of what they were on about! She was never like that, as she was the gentlest person I have known, but you may get my gist.....
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hey Danni

    you say when im faced with a "professional"

    ...in my experience, I have generally known more about Jan's condition in the round than most of the so-called professionals. Don't denigrate your knowledge or the part you are playing.

    It is good to brief yourself though, to be able to counteract some of the inane things the professionals may say..... ;)
     
  14. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Danni,

    I think your approach to "study up" before meeting with the "professionals" is a good one. I've always said that "knowledge is power" but the dementia experience puts that slogan to an extreme test. I think that feeling of powerlessness, as you see your loved one change, is one of the hardest to cope with. Working to become their own personal expert and advocate can help with those feelings of helplessness (but can also feel frustrating and confusing, sorting through all the pieces of information).

    It was difficult to see your father so distressed at Uncle Tom's condition, but at least he is now on his own path to accepting and understanding what this disease is doing to his brother. The decisions that will have to be considered over the coming weeks will be much easier if you and your mum and dad have roughly the same outlook on your uncle's needs.

    Take care and feel free to post more questions or vent as the need arises.

    Sandy
     
  15. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Naughty

    Hi Bruce,

    Yes, I think that partially I object to the term naughty because it has childish connotations. Also, it's so non-specific that it doesn't really help identify what's been going on (and what the root cause might be).

    But I think my real problem with the term naughty is that is implies some degree of willful disobedience. If a child has been told not to have a sweetie before dinner, understands this message and then helps herself to a chocolate - that could rightly be described as naughty.

    It seems to me (and I am still in the early days of this process of supporting a loved one with dementia) that the best care is person-centred care, where we try and see the world through the eyes of the person with dementia. From their point of view, certain rules/conventions may be meaningless or can even seem mad. In that sense their behaviour isn't disobedient or naughty, as the rules aren't remembered or don't make sense.

    Thanks for helping me to ruminate on the issue and clarify my thinking.

    Sandy
     
  16. janey

    janey Registered User

    Jun 29, 2004
    86
    Morning Norman
    You asked 'does this now mean that care homes are as nursing homes used to be with care and nursing staff?
    Are there now no homes with just care staff?'
    As far as I can work out, all homes (both what used to be 'care homes' and what used to be 'nursing homes') are now called care homes, but some have qualified nurses in charge, and some do not. During the last year, my Mum has been in a 'care home' with no RGN in charge, and now is in one where there is an RGN in charge 24/7 (because she now needs nursing, as opposed to simply personal, care).
    Reading this, it looks as clear as mud - maybe someone else can confirm the situation for us?
    Best wishes
     
  17. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Jane,

    I think you've explained that difference perfectly.

    On the Commision for Social Care Inspection Web Site it says:

    There are different types of care home:

    Care home only
    A home that provides physical and emotional care to residents who are no longer able to be cared for in their own homes, but who do not need professional assistance on a 24-hour basis. Nursing support is provided by community nursing services.

    Care home with nursing
    A home that provides 24-hour registered nursing services to residents who are very frail and need professional nursing assistance on a frequent and continuing basis.

    Care home not providing medicines or medical treatment
    A care home where no medical or clinical intervention takes place. The service is based on the power of prayer.


    That third option was a new one for me. Possibly something to do with Christian Science teachings?

    Take care,

    Sandy
     
  18. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Thanks for the explanations,Re care homes.
    It seems to me that all that has happened is that we have lost the nursing home title?
    Regards
    Norman
     

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