1. Expert Q&A: Living well as a carer - Weds 28 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 Wednesday 28 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. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    Hi,

    I've been caring for my dad for around 10 years now, he's lived fairly well with vascular dementia on his own and I live 3 miles away with my family, which is what he wanted. However, his dementia has been progressing rapidly this year and, although I have reduced my working hours to 12 per week, dad needs someone with him pretty much all the time he's awake. So I now have a lot of paid help to the point the only time he's alone is when he's in bed and for 3 hours 9-12 three days a week while I go to work.

    However, he is now suffering from panic attacks. A lot. After searching for a pattern I'm beginning to think they are triggered by being alone.

    I have been to my go to discuss the fact that as we can't afford long term live in care, residential care is our only real option. But we have been told that there is no facility to suit his needs - fully fit and mobile, constantly requiring stimulation etc.

    Where do I even start looking for suitable care in these circumstances?
     
  2. Jessbow

    Jessbow Registered User

    There are homes that cater for the physically able. search Care homes rather than nursing homes. Most have activities and such where people can be semi independant
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    I would also specifically search for dementia care homes, dedicated dementia units and EMI homes.

    Who told you there was nowhere that would suit his needs? Mums care home would accept most people with dementia - they just couldnt accept violence.

    A lot of care homes say that they will accept people with dementia, but as soon as there are symptoms of dementia like wandering at night, going into other peoples rooms, trying to escape or resistance to personal care (all perfectly normal with dementia) the home will often give notice and you have to look for somewhere else, so ask about these sort of things.
     
  4. Elle3

    Elle3 Registered User

    Jun 30, 2016
    603
    Hi Bassetlaw Badge, I'm not sure I really should be replying to you in my current emotional state, but I felt I needed to, I will try to keep it as brief as possible. So please also feel free to ignore me.

    My dad has Advanced Dementia and we came to a point in January when myself and the Social worker agreed dad should no longer remain at home alone, due to his safety and welfare. So I was given the task of finding a care home for him, with not a lot of guidance to be honest and I was basing our needs on my dads current demeanor, which was very similar to what you say your dad is, fully fit and mobile and required practical stimulation, as he doesn't like TV/Reading/Playing games etc. The only thing wrong with my dad was his brain no longer worked due to the Dementia so he was putting himself at risk.

    Roll on a couple of months, I finally found a care home I liked, it was on the list the Social worker had given me, it was local to my dad, they came out and did an assessment and apart from some concerns they had about dad wanting to go out a lot, they agreed they could offer him a place so he joined their waiting list.

    Nearly 3 weeks ago I got a phone call to say a room had become available, I had to agree to accept it straight away and within 4 days I moved dad in on Friday 13th April, which turned out to be a lot easier than I thought as he trusted me and I told him it was for a holiday and to help his leg get better (he kept burning it on his electric fire).

    The following evening (Saturday) I get a phone call, dad had got verbally abusive with another resident and had tried to grab his arm so they had to report him to safeguarding. At this point dad was also asking to leave and was going around trying doors and windows.

    Dad continued all the following week to try and leave the home, trying doors and windows and setting off alarms etc. On the Saturday (21st April), I get a phone call at around 10pm to say dad had managed to break a window lock and had climbed out of the window and had escaped from the home and they had Police and staff out looking for him. Fortunately he was found about a hour or so later. But this then lead on to the home saying they had reached crisis point with him and they could no longer take care of dads needs and he would have to leave.

    So in less than 2 weeks we have gone from dad still living at home, on no medication, happy in his own little world, going out as he pleased, having lunch with me and with me taking care of his welfare needs and keeping a watch on him with a system called 'just checking'. To now dad being called 'Challenging, aggressive, distressed, agitated and being assessed by the later life and memory service and prescribed medication of Trazodone and Lorazepam. He has become incontinent and the care home have asked for him to be removed asap as they have expressed concern about the potential risk to my Dad's safety and the significant risk to the safety of others.

    (I do have a couple of recent threads about my recent journey and my current crisis if you want the full story).

    So now the advice bit. Make sure when looking for a home for your dad that they fully understand your dads needs and they can meet these needs, visit the homes at different times of the day too to get a best idea how it is run. I have been told now that I have to look for EMI/Challenging Behaviour Care Homes with specialist Dementia units that are very secure. Ask lots of questions how they would deal with certain behaviour and if they would tolerate it as you do not want to be in the situation I find myself in now, having to urgently find dad another care home that is willing to accept this 'monster' that being in a care home has turned him into.

    Sorry I don't want to dissuade you from placing your dad in a care home. I know we have to make these hard decisions for their own good and I still stick by that. I just wish with hindsight that I would have known how my dad would react to the change and that the home I chose could have coped better.

    Good luck.
    Elle x
     
  5. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    As others have said, there are dementia/EMI care homes which should be able to fit your dad's needs. My mother is mobile and physically healthy, and her care home provides activities and she has plenty of company and attention. I was in two minds about moving her, but as her care needs increased she needed supervision 24/7. Fortunately she loves the care home.

    If your father is self-funding and you have LPA you don't need to involve Social Services, you can look for care homes yourself. I found my mother's care home via carehomes.co.uk - looked at reviews and the CQC reports and then called and made some visits. They ask for a summary of your relative's needs and then do an assessment.
    If he isn't self-funding you need to contact Social Services.
     
  6. Malalie

    Malalie Registered User

    Sep 1, 2016
    307
    Female
    The home that Mum was in would be suitable I'm pretty sure - a big mix of all sorts of people, but it actually had three specific components - Residential was for elderly people maybe frail, unable to cope at home with no family, early dementia etc, etc. Nursing for people who were bedbound, or temporarily needed proper nursing care after an illness, and an EMI Unit for people with challenging behaviour.

    Where the resident lived did not dictate where they spent their day - the coffee bar area was always busy with visitors, activities going on etc etc Some of the EMI or Nursing people attended stuff going on downstairs. People from the EMI unit would be downstairs, and if they started to become upset or disruptive a carer would take them back upstairs so as not to disturb the others (My Mil was in residential, but they they were thinking of moving her upstairs due to aggression during personal care and sundowning after about 1600, but she was fine all day, and I'm sure she would have had lots of time downstairs if she was happy there.) The EMI had more carers per resident, and there were lots of activities up there too. Quiet lounges too, but I hardly saw anyone in them.

    There were trips out and anyone could go if they had an appropriate number of carers or relatives to accompany- trips were suggested by the activities organizer and relatives or residents. It was a very good set up, a chain, but each care home is only as good as the manager and staff of course.

    I think that you will be able to find somewhere if you hunt around - they are not all people sitting around sleeping in front of the TV (...although that's all my MIL did after midday in her own home....!)

    I wish you luck and hope you find somewhere that you are comfortable with.
     
  7. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    Thank you all for your replies - this week has not been any less challenging. I'm currently sat waiting for dad to 'settle'. He's got showered, changed into his pjs, then dressed again, then changed back into his pjs, put his trousers on over the top and then back into his pjs with my help. All in the last half an hour. He has no idea where he is. He is in the home he' s lived in for 35 years. I hate dementia.

    In answer to the comment, who told me there's nowhere suitable locally: both our GP and the Alz Soc told me. I have no idea what I should be looking for as everywhere sounds the same. I don't know what is available elsewhere that isn't available in our area.

    Elle - you sound like me, just a tiny bit further down the road. I can only hopefully learn from your experiences and hope similar does not happen to us. The Just Checking is providing me with a little peace of mind and has given me a couple of hours extra this weekend with my son as I would normally be here for 8am and I've watched until I've seen him move in his bedroom before coming over - and on both days it's been gone 9am before this happened. So that's been great.

    I've sent off for an enquiry to a Residential Village in York. But at £165 a day for respite it's not a permanent option for us - more like a fortnight's holiday once a year.

    Malalie - we are self funding for now, and quite near Grantham. I'd be grateful if you could let me know what residential home this was - and an indication of cost would be helpful too!

    Again, many thanks for all your replies, they have helped.

    Jx
     

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