1. ElleSH

    ElleSH Registered User

    Feb 26, 2015
    Sorry in advance for the long post!

    My mum (65) was diagnosed with frontotemporal dementia last year and is unfortunately deteriorating rapidly. We made the difficult decision to place her in a care home at the end of last year after it became apparent that my grandfather could no longer cope and his own health was in danger (mum originally moved in to help care for him – only for the roles to reverse :(). I work full time and live over an hour away, so can mainly only visit at weekends.

    Mum hasn't settled well at all in the home and generally seems very unhappy and anxious. She has also recently become increasingly verbally aggressive – and has actually physically hit another resident. The social worker recently visited for a care review (which I unfortunately was unable to attend due to work) and mum told her that she hated it there.

    I also have some concerns about the home. From what I've seen there seems to be little in the way of activities put on for the residents - mum seems to spend most of her time in her room, or wondering back and forth. Whenever I visit, most residents are sat (mostly silently) in their chairs and the atmosphere is very depressing (at least to me). Without going in to too much detail, I also have some concerns about the staff and the way things are communicated, as well as the way in which mum's own needs have been assessed and dealt with.

    Anyway, the point of this post – the social worker contacted my grandfather today to say that a room has become available at another care home much closer to where he lives. Mum's current home also isn't far away, so we’re talking a 5 min drive as opposed to 20 min.

    I've done some internet research and this new place looks pretty good and has a good CQC report from last year (but then the current home also looks good on their website and has a decent report from 2013!).

    My grandfather is very opposed to the idea of moving mum, as he thinks it may unsettle her even further. She also still regularly asks about going home (even devising plans to 'escape') and he is concerned this will become even worse if she is closer. The new place is also a bigger home and he is worried will be no better – the grass isn't always greener after all.

    I fully understand his concerns – I think the biggest problem is that mum is so young to be in a home and still believes she can live independently. The pessimistic part of me therefore thinks she won’t be happy in any care home…. but maybe she might be less unhappy somewhere new?

    The big question then – do we move her? I've asked if we (myself and my grandfather) can visit the new care home this week for a look round. However, I'm trying to put together a list of what I should be looking for / questions to ask (we didn't get the chance to visit her current home beforehand, as she initially went in for emergency respite). Depending on that visit, I'll obviously also then have to work out how to approach the topic with mum.

    Obviously, at the end of the day, only we can decide but I wondered if anyone else has had a similar experience of making this kind of decision? Any thoughts or advice would be much appreciated.
  2. Beate

    Beate Registered User

    May 21, 2014
    While moves can be unsettling, if the current care home isn't up to scratch, can't meet your Mum's needs and your Mum hates it there, a move might be a good solution. Obviously you need to make sure the new care home is able to meet her needs so it isn't just out of the frying pan into the fire. Your Mum may hate any care home chosen just out of principle, but there are big differences in care and staff attitude to be had. Why should she be left in a depressing place without activities? There is a good fact sheet here: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=150
  3. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Hi Elle,

    You have nothing to lose by going to check this other home out. Just go on speck, you will see from that if they agree to show you around and talk to you about it. Ask lots of questions, only then can you do a comparison.

    Whilst dementia sufferers do not like change and can unsettle them, I think they do adjust to new surroundings, as my mom was recently in hospital for quite a few weeks and then into a care home and she did not really notice a difference.

    If you have a CPN assigned to you, this would also be an avenue to talk through your concerns.
  4. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    i think you will get a feel for what is right when you have been around the new home, you do get a feeling for good and bad homes, also for what will suit your Mum best. i think it is interesting that the social worker is offering a place elsewhere, presumably she has some doubts about your mum's current placement.

    I would check out that the potential home can cater for your Mum long term, what you want to avoid is moving her and then having to move her again. Being aggressive can sometimes be modified with medication, to a degree, it may be worth talking to her GP or pscychiatrist aboht this. It could also be indeed a sign of frustration and irritation at her predicament. At such a young age, it certainly sounds as if she would be best off somewhere she can get involved in activities, if she is able, they can be excellent for distraction.

    It must be very awkward if you feel you and your grandfather are going to disagree on this one but you must do what you feel is your gut instinct of what is right for your mum. If he is ill, in the long term, should she be nearer you than near your Grandad, if she is likely to outlive him? I would plan at this point for the long term. Good luck with this difficult decision, let us know how you get on.
  5. ElleSH

    ElleSH Registered User

    Feb 26, 2015
    Thanks so much for the replies. I was feeling pretty lost and self-doubting last night and reading these this morning has really helped.

    I had previously raised the possibility of looking for a new placement with the social worker and got a fairly negative response – pretty much "well it's unlikely to be better anywhere else" – so was quite shocked when my grandfather rang to say she had suddenly found a place mum could potentially move to. I was also taken aback by how he instantly started listing the reasons it was a bad idea to move mum – he apparently initially told the SW "no" straight away but she insisted he discuss it with me first. I'm actually wondering why she rang him and not me – a bit strange.

    To be honest, I've really struggled with the change in my relationship with mum and the fact that I am now the one assuming the more 'parental' role. This probably sounds selfish but I feel like I'm barely in control of my own life, let alone having to make hugely important decisions for someone else. I've therefore really relied on the support and back up from my grandfather - and was completely thrown at the prospect that we may now disagree on such a big decision.

    Things are looking more positive this morning though – we're planning to visit the new home on Thursday and my grandfather actually (on his own initiative) went for a drive to find it and have a look at the outside this morning. He's now sounding a bit more positive about things and has agreed that it can't hurt to consider our options. So we'll see how things go on Thurs…..
  6. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    We ended up having to move my Mum twice! this certainly was not planned originally.
    One cannot anticipate the future with Dementia with any certainty. Sounds to me that you have nothing to lose by moving her. Please try not to feel too guilty, you are doing what is in her best interests, keep that at the front of your mind.
    Agree with previous post that medication can make a very real difference, mostly its used on an 'as needed' basis, not continually.

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