1. Janeyre

    Janeyre Registered User

    Jun 11, 2015
    Hello fellow compatriots!
    My husband was diagnosed in 2013 officially, though for 3 years before that there were worrying issues! (Ken was a Hire Driver for private hires -walking groups that were taken by bus to remote areas of Scotland for a day's walking. Latterly in his career he couldn't remember well-known routes and was checking out maps. Verbally he did not remember instructions but was OK with a written manifest.)
    Since then it has been downhill (some plateaus) continuously, as many of you have experienced.

    I have been reading with interest and sympathy many "blogs". (Also don't understand some of the technological terms; I use it as similar to a ship's log; ie recording what's happening at any one time; thinking of the 'b' as 'biographical'.)

    Finding it quite difficult to enter the world of cyberspace with so many different rules and terminology for each site - this is I believe is what is called a 'thread'.
    Hopefully I can now interact with the site; many times I have written screeds and at final point it DOESNT GO and is wiped off !! (At which point I give up as hubby is pacing up n down saying "up shops" continually!)
    Ken has Separation Anxiety from myself,the car and "home"!

    I was given a week's Respite from Monday,3rd to 9th August, but only got 3 hours Monday as I had to fetch him home because THEY couldn't cope! Such is life!!
  2. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    Was that in a care home, the respite? They may not be people who care for those with dementia?
  3. Quilty

    Quilty Registered User

    Aug 28, 2014
    Hello And Welcome,

    I hope you get a benefit from being on Talking Point (TP) I most certainly have. If your respite failed, have you thought about asking social services to help you identify a more suitable place? You still need the respite after all.

    Take care and please relax. There are very few rules here. You are in a safe place amongst friends who understand and don't judge.

    Love Quilty
  4. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hi Janeyre, welcome to TP.
    This is indeed a thread :) and the individual replies are posts. A blog is short for web log - yes, like a ships log, but posted (written) on the web. Im sure you will get the hang of forums very quickly.

    Im sorry to hear about the respite, like chuggalug I wonder whether the CH is used to dementia. Some CHs are more general and although they they say they accept people with dementia (PWD) they are not dementia trained and cant cope with the more challenging behaviours.

    Anyway - welcome on board and join our merry crew :D
  5. Jinx

    Jinx Registered User

    Mar 13, 2014
    Hello Janeyre, and welcome. It does sound as though the respite wasn't in the appropriate sort of unit where they deal with mental health issues. What would have happened if you had gone away as I do when OH goes into respite? Do you have support from Social Services? If they arranged the respite I would go ballistic if I were you. Our Social Worker thought that my husband might be OK in an ordinary care home for respite despite my reservations, fortunately they took him for a trial day and had to put him in the EMI unit as they couldn't cope with his wandering.

    Sent from my iPad using Talking Point
  6. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    Hello Janeyre and welcome to Talking Point which is a marvellous place. Keep writing.

    I m sorry about the problems concerning your husband in respite, what a worry for you. As others have said it sounds like he was in the wrong type of care home.

    My husband has been in a care/nursing home just over 4 years and there are 6 different units in his care home. The one he is in is a secure Dementia unit. The staff are all dementia trained and the nurse on one shift is a Mental Health nurse. Sometimes they have someone with dementia in for a week or two respite care. They deal with all sorts of 'problems' and I have never known them to decline to take anyone with dementia because they could not cope with them. They deal with all types; wanderers, aggressiveness, shouting etc.

    The other units are all for elderly fairly active and reasonably fit, while others are more frail and some do have early dementia. Each unit has nurses on the day and night shift. The dementia unit has 16 residents, 3 carers, and a nurse on the two different shifts.

    I would think that is the type of care home unit your husband should go to for respite. If you have to find a different place, visit it more than once and ask lots of questions. Make sure there is a dementia unit and ask about nurses and carers dementia training. I visited a number of care homes and although most had a dementia unit I was not impressed by all the carers/nurses in some. It took me a while to decide on the one he is in, and thankfully as it has turned out my gut feelings - plus lots of questions - paid off.

    Sorry I can't offer more helpful advice but there will be others here who can. Good luck and very best wishes.

  7. Janeyre

    Janeyre Registered User

    Jun 11, 2015
    #7 Janeyre, Aug 6, 2015
    Last edited: Aug 6, 2015
    Improving technophobe!

    Many thanks for your replies, all of you, will do my best to answer a'body's queries as I would like any tips about trying to get Ken settled even for a brief period.
    firstly; quite right was not Dementia related but Social Services had placed him there after abortive trip to my relatives (for 10 days, only lasted 3;with emergency return on 11 hour train journey!! And thereby hangs a tale!!)
    Ken stubbornly refuses to move if he doesn't want to ( 10 stone toddler!)and we had to clandestinely get my daughter to take over suitcase from boot of my car, follow us up to outside C/H (daren't leave it in drive for him to see) deposit him with luggage & run for it! All this had been explained previous Friday to staff. Incidentally, SS had explained C/H not got dementia unit but were fully able to deal with all and any exigencies.
    I know you may be asking yourselves why Ken was not informed of arrangements - not possible to get him to agree to any choices other than ice cream instead of custard. And certainly if he has to be separated from me we just have to leave him with Support Worker or family members and I leave after they've taken him out of the house.
    I really need someone ( in authority) to help me see over the unit that they can get a placement in, and then arrange for Ken to be kept in while I leave after explanation.
    Ken is physically fit, we walk our JR terrier every day and he has no major health problems not controlled by medication.
    We are completely funded by local Council as we are below the 'own costs'level. Not sure if it makes any difference to choices I can have.
    I have been told by my Care Manager to look for a permanent home as it could be several years before a place is available; thanks for tips,Loopiloo.
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Nope - we all understand the scenario. You will find loads of stories about about telling them they are going on holiday, going for a cup of coffee etc etc and then making a quick exit while the CH picks up the pieces.

    Main tip - find a CH where the carers are dementia trained, can deal with his behaviour and doesnt phone you after 3 hours!
  9. Janeyre

    Janeyre Registered User

    Jun 11, 2015
    Found you all again!

    I'm sorry not to have been in contact but couldn't work out how to find proper site! But now got on "home screen " so hopefully can continue to hear posts, blogs,messages - whatever! (Still finding it difficult to navigate/arriving at desired point.)
    Just been to a friend's memorial service, without Ken; as he wouldn't get out of the safety zone of the car. Arranged to have support worker to come, take him shopping, afternoon tea & rock cake. Left him eating after lunch with a written note saying I'd be back in half hour. ( he wouldn't remember time passing and I was able to be away for 2 hours)
    Carer said he refused point blank twice to put on coat to go out! So she ignored him for a few minutes and then suggested would he like to get his rock cake? Huge smile and got coat on pronto. I find Ken has delayed understanding, but once a familiar word has sunk in and connected he can be got to move; albeit very slowly.( in his compos mentis days
    He used to say that he was too slow to catch a cold! Nothing new then, just exaggerated!)
    Thank you once again for your fellow feeling.

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