Since mum went into care in October 2015, I have been wondering whether an institutional home is the right place for her. Experts and professionals involved in dementia care have insisted to me that she is better off in a care home. This reassurance has put my mind at rest for weeks, and even months, at a time. However, the question invariably comes back with greater force and more insistence than before.

Decision to move into a care home

My sister Christine and I looked at care homes while our mother was in hospital for six weeks in October 2015. We could see that she couldn’t live on her own again. Her friends had been talking up the benefits of a care home, even before the mini-strokes that rendered her confused and dependent. Nevertheless, I remember being dismayed it was the only option presented at the hospital’s Best Interests meeting. It was decided that my mother, who had lived independently until a few weeks before, didn’t have the capacity to decide about where she would live, or how she would be cared for. Nobody involved my mother in this huge decision that affected only her. My sister and I were still reeling from the sudden dramatic changes in my mother, and knew little about her capacity to engage with such decisions, or how we could support her. I’m still not entirely clear what we should have done.

When I did take mum to see an award-winning care home, she was understandably frightened by the prospect of moving there. She felt physically sick. The specialists in the Best Interests meeting at the hospital didn’t present any other possibilities. They did not suggest ‘the least restrictive option’ which, as I now know, is prescribed in the Mental Capacity Act 2005.

Not happy where she is

The simple fact that fuels my constant nagging doubts is that mum is not happy where she is. She feels alone, surrounded by strangers. She spends significant periods of time anxious and unhappy. She becomes dismayed and distressed when she discovers she can’t get out. Given this, living at home with live-in carers would probably not be a better option. They would also have to restrict what she could do, and I suspect could not address her sense of isolation. What she needs is the comfort of knowing that her family are near.

Happy to be with family

When I arrive at the care home I sometimes watch mum for a few moments before she catches sight of me. When she sees me, the stress or agitation drains out of her face, sometimes immediately. She often greets me as if she hasn’t seen me for a while, with a big surprised smile and arms outstretched. Sometimes she collapses into tears on seeing my familiar face. Being with family is reassuring and takes away her sense of isolation. Between us, my sister and I visit daily, but that still leaves huge chunks of every day on her own.

Deprivation of Liberty Safeguard

In August, I withdrew my support for the Deprivation of Liberty Safeguard that allows the home to keep my mother locked in for her own safety. If no family member is prepared to sign the document, an expert called an Independent Mental Capacity Advocate (IMCA) is engaged to assess her needs. I hoped that mum’s persistent stated desire to get out of the home, her distress at being locked in and her many attempts to break free, would force the IMCA to present other options for us to consider. Instead, when mum was recently assessed, the advocate just endorsed the Deprivation of Liberty Safeguard. The IMCA didn’t consult me, which I expressly requested, and she didn’t offer a ‘less restrictive option’. I am still trying to get to the bottom of this.

If we were advised that mum would be better off at home, with family around, I would feel compelled to make that happen, or at least give it a try. I am not an expert, and I know you shouldn’t move people with dementia without good reason, so I don’t feel able to make this decision on my own.

Also, such a move would have major implications for me and my husband, Jack. I am aware that many others have made huge sacrifices to look after a parent living with dementia at home. These real-world angels have suspended their own lives to ensure their parent’s last years are as peaceful as possible. At a three-day workshop to support carers of people with dementia that I attended last week, I met amazing people doing just that. I must admit that I don’t want to disrupt my world in this way, but the alternative isn’t great either. My mother’s frequent distress hangs over me like a mist that won’t clear.

Time to decide

So how do I decide? Penny Garner, the pioneer of Contented Dementia, has re-inspired me to get back to work on ‘spotting’, a process I describe here. Penny has offered to help me make sense of mum’s words to see if between us, through trial and error, we can come up with some better, simpler guidance for the care staff to improve mum’s wellbeing. So, I have gone back to recording my mother’s words and transcribing them into my ‘Spotting’ document. I have also asked care staff to once again note all her most frequent questions, so we can try out more palatable answers. It feels as though we are testing the Contented Dementia method on its most awkward customer.

I am happy to say mum has been more settled this last fortnight following a change in medication. With this, and Penny’s expertise and support, I am feeling more hopeful. I’m setting myself a deadline of the end of February to make a final decision. If things haven’t improved by then (when I return from a three-week holiday) I will feel compelled to act.

4 thoughts on “Should I Bring Mum Home?

  1. I’m so sorry your Mum isn’t happy.

    You say she ‘feels alone, surrounded by strangers’, and ‘distressed when she discovers she can’t get out’. You then say ‘Given this, living at home with live-in carers would probably not be a better option. They would also have to restrict what she could do, and I suspect could not address her sense of isolation.’ You then go on to say ‘What she needs is the comfort of knowing that her family are near.’ That is the key here. It doesn’t actually make a difference whether you’re in the next room or 1000 miles away, it’s the FEELING that you’re near that’s important. We need to somehow engender the FEELING that you are somewhere around and that if you’re not actually sitting next to her right now, that you aren’t far away and will be along soon.
    I used to visit a man whose family had got this down to a fine art and he used to say they were ‘always popping in’ and I got the impression that they visited at least daily, when in fact it was a fortnight since any of them had been.

    The attitude of the care staff makes a big difference too. One of my clients had decided to keep his mother at home ‘for her benefit’ with carers during the day and he cared for her at night. It didn’t work terribly well because the carers didn’t seem to be able to get on to her wavelength and she was often in distress by the time he got home. She is now in a care home and although things aren’t perfect, she is more settled there than she was at home. The doors are locked but she doesn’t feel locked in. After all, you don’t discover that a door is locked until you try to open it to get out.

    If your Mum doesn’t feel ‘at home’ where she is, (by the way, where does she FEEL she is – hotel? hospital? boarding house?) you can agree with her that things aren’t very good here and that you are doing everything to get her ‘home’ soon (ie ‘home’ in the sense of that place where everything makes sense).

    Wherever she is, she won’t feel so isolated if there is someone on her side, so if you do bring her home, any live-in carers need to understand how to *be* with her and how to be *with* her. That is what your Mum needs more than anything.

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    1. Wow! Shirley thank you so much for this. You are so kind to read my post and respond so comprehensively. Mum doesn’t recognise her room from one day to the next. Depending on how she feels she is happy to stay there or is really uncomfortable, as if she is in a public space. I know and agree this all has to do with how she is ‘feeling’. I don’t actively want to bring her home as that will mean living here in her home indefinitely, and at some point I will want to resume my own life, back in Brighton. That makes sense about learning how to make those feelings present when she is at the home, which would help to avoid the meltdowns where she gets quite agitated. In your words comes a lot of learning and insights. Mum knows I am on her side, and is aware I visit for a short time regularly (2-4 hours 5-6 times a week). I have told her we will find a better solution if this isn’t working. Perhaps I have said it so many times I finally think it is time to act, if we can’t make it work. I don’t think the staff get ‘it’. They are quite happy to contradict her, even yesterday finding her ‘This is me’ book to point out she got something wrong!!! Yes, I think my mother only becomes aware she is locked in when she thinks its time to go. Then she thinks she is at work or in a public place and simply wants to go home. Then the horror of realising she can’t get out, over and over again is horrific.

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  2. Julia – this is really interesting to me – My mum, who was diagnosed with dementia five years ago aged sixty, is still at home but the only reason this is possible is because my dad is able to care for her. We are reaching the point with her dementia where her mobility is reducing and she now stumbles over steps, struggles to get a cup to her mouth etc – I wonder how much longer she will be ‘safe’ at home. She is almost entirely unable to communicate now so it is very difficult to know whether she is happy or sad or anxious – there are non verbal clues but often she just looks vague – as a result it is hard to know what she wants. On the occasions where my dad needs some respite and my sister and I are unable to provide cover (most of the time mum stays with us for a few days) she has been attending a residential home for short breaks. The staff there have suggested that she isn’t getting much out of the activities on offer and that she might be ‘happier’ on the top floor where the other residents with dementia stay. It feels as though she is being incrementally institutionalised. I am a GP and cover a nursing home in our locality – the surroundings and noises and smells of a care home are much more familiar to me than the rest of my family. My mum, in her pre-dementia state would have found the whole idea completely abhorrent but she does not seem distressed when she goes for a short break – maybe because she knows she’s going home again after or maybe because she is just withdrawing more and more into her own little world. Either way, I feel that we are currently in a precarious situation balanced between long term care at home or in a residential setting. I am really interested in how others deal with these dilemmas and will follow your blog to see how you get on – best of luck – it’s not easy.

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    1. Dear mumhasdementia First, I am so sorry that I forgot to reply to your lovely informative message, after approving it over a month ago. I remember being very interested in your situation and have been to your blog. I think things were a bit busy around then, and I just forgot. It’s amazing your mum has been supported to stay at home for so long, and I think she will have benefited hugely from this. But yes it does sound like she could get more support now in a care home. I will be interested to hear your next steps, and I will check your blog, to see if any further decisions have been made. My mother is still very engaged in things she wants to do (go to church, walks, etc) and she is able to chat at times quite fluently, and other times with frustration as she loses words, and trains of thoughts. We have now made the decision to bring her home as I describe in my latest post, but I will have a couple of months grace to fulfill commitments, and get things in place. Good luck with your decisions. Julia x

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