1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. VerityH

    VerityH Registered User

    Aug 21, 2018
    Dad's had dementia for years - no formal 'type' short term memory loss and some confusion. Mum has been his carer with help from morning and evening carers.

    Mum has been showing signs of dementia for the last year. After many months of waiting for diagnosis, she was diagnosed with rapidly shrinking brain, alzheimers and vascular dementia. She started donepezil last week, had bad reaction (maybe) and blue lighted into hospital Weds night, possible TIA. Still in hospital having tests, but medically not bad now. Dipping in and out of sanity. Sweet mild mannered mum turns into mad lady sometimes and delusional, thinks we're all criminals and the police are coming for us. Hates me a lot of the time. |But lovely mum sometimes.

    We got dad into emergency respite care home, which is safe but not really meeting his needs. As he has no short term memory, he needs someone at his side constantly telling him where he is and where mum is. |This is not possible with the staff ratios. In first day he's lost his glasses, his walking stick, his tv remote and his head wound has been treated incorrectly despite our medical instructions.

    Mum's care in hospital questionable. No joined up communications. No-one looks in records. We don't get to see the doc as he comes round mornings and we are not allowed on ward till 1pm.

    We need to find a home for both of them, but have no time to visit and check out homes, as we are both with either or them most of the time. I've got MS and need to maintain my health so I don't get ill. My sister lives locally to them, I live about 1.5 hours away.

    Self funders so no help from social services. Alz Soc sympathetic but other than giving helpline numbers not much use.

    Hello all you fellow crisis livers out there. Has anyone got anything in the way of good advice for us?

    Sorry if I sound nuts. I rather think I am.
  2. chris53

    chris53 Registered User

    Nov 9, 2009
    Hi Verity,a warm welcome to you to Talking Point.
    Oh boy such a lot going on for you and your family,trying so hard to get mum and dad much needed help, just because your parents are self funding doesn't always mean that Social Services,could or should dismiss your situation, vulnerable adults and duty of care seem to be the key words,if you and your family were not able to look after them then they would have to step in,having a chat or dropping in a letter outlining the situation to your parents GP can sometimes be worth its weight in gold as the doctor can lay it on the line with SS..also PALS at the hospital will be very informative, I believe many hospitals have their own social care team.
    Hoping you will get much needed reassurance and practical help soon.
  3. Helly68

    Helly68 Registered User

    Mar 12, 2018
    What Chris says is spot on. We self fund my mother in a care home, my Dad still lives independently. When SS assessed us - actually a waste of time but sometimes you have to try - we made it clear that as I have a disability I couldn't safely care for Mummy - in any setting. If she fell, always a huge health risk for vulnerable people, I couldn't lift her and I can't transfer her to a wheelchair as she now needs. I wonder if phoning some care homes in advance, explaining that you would find it hard to visit and getting as much info as possible before making any visits. For instance, some care homes don't have specific dementia services, some cant deal with "challenging behaviour" - it is helpful to get them to define this - if they can't support these things, and a surprising number of homes can't then take them off the list.
    Also helpful to talk to CH managers as they often know of other facilities. Do either of your parents have medical needs that might mean a nursing home is required? it is a lot to think about but my Mum has done very well in her CH.
  4. kindred

    kindred Registered User

    Apr 8, 2018
    Yes, Chris is right. I say this from personal experience: ask the hospital if they have a social work team attached? It doesn't matter if you are self funding or not. When my husband had bad accident and had to go into hospital, the social worker there was the best help I ever got during his pre-nursing home times. Tell her your predicament and keep in mind that SS usually know where the vacancies are. The social workers at the hospital found me the home my husband is now in, I went to check it out, gave them the thumbs up and the transfer happened.
    Otherwise telephone the homes. This is happening all the time, i can hear this happening when I am with husband in his nursing home. If they sound hopeful, have an e mail ready describing their needs in more detail, send it across and see what they respond.
    Warmest, all the very best, Kindred.
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @VerityH
    a warm welcome from me too
    there may well be some useful info in the AS site's directory of local services
    and the CQC site

    and Admiral Nurses may also be able to help

    I am disappointed that you are not allowed on the ward until a certain time - ask if there is a dementia matron (or some similar title) and speak with them, as you need access to the medics - the PALS will probably be able to set you in the right direction
  6. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    I found PALS very helpful when I was trying to chase up information about my dad who is currently in hospital. It was almost impossible to find anything out before I involved them.
  7. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    John’s Campaign speaks for the needs of dementia patients in hospital, it advocates for wider visiting times. If you google John’s Campaign you can find a list of NHS trusts/hospitals that are signed up to this.
  8. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    It is always prudent to seek out any 'dementia team' active in hospital. They can alleviate much angst, as hospitals - alas - are not generally conducive to dementia care.
  9. Beate

    Beate Registered User

    May 21, 2014
    Our hospital has a DAD - Dementia and Delirium Team that was very helpful when I ran into pig-headed nurses who insisted on me adhering to visiting times, but I never let them win. Sometimes a hospital is signed up to John's Campaign but the nurses don't even know! These days they actually hand out carer passes so you don't get hassled, which is progress.
  10. VerityH

    VerityH Registered User

    Aug 21, 2018
    Thank you all. This is the first chance I've had to check back to see if anyone had answered my post! Things are settling down a bit. I got in touch with PALS at the hospital, who were sympathetic and got in touch with the ward manager. We WILL have mum assessed by a social worker before discharge, different times of day and different days, so they can see how much she can remember and how aware she is of what's happening. She's got no idea what's going on so that should be flagged up. Mum is usually upset and aggressive when we arrive to visit her, but calms down after a while. Whilst we weren't over impressed with the emergency care home we got dad into, it suits his needs and is easy for him to navigate physic'sally, and the other places we managed to visit, whilst nicer, were a bit up and down and he wouldn't have managed stairs and lifts etc. So we've provisionally booked mum in to the same home as dad when she's discharged from hospital, and we'll have to see how that goes. I hope with all my heart she settles into it and her dementia doesn't mean she is too much for them to handle, but only time will tell. Dad's funny with his short term memory loss. When we visit, he just does the same 5 questions over and over again, as usual, and seems to agree with the way we're handling things. He was wanting to know yesterday whether we've sold the house - it's only been 10 days!

    Hey ho. We are surviving, just. Thank goodness for people like you lot who can direct us to the services we will need, as the organisations set up to help us have been somewhat lacking, to put it politely, thus far!

    Thank you thank you thank you.

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