Picture this. You wake up in a strange place. You don’t recognise the room, you don’t know where you are, or even what country you’re in. Gradually you notice familiar objects: your dressing gown, photos of family and ornaments. You wonder how you got here. You try the door to the garden, it is locked. You go through the door to a corridor, and spot other doors that won’t open. You recognise some people, and ask for help. They smile, but look awkward. You ask again, and they say, ‘You are living with us now, June.’ They know your name! You feel a growing sense of unease. You want to get out, but they won’t help you. You wonder where your family is.

Loss of orientation and place

I try to imagine what it must be like for my mother every morning when she wakes up at the care home. I guess it goes something like the above. Dementia has robbed my mother of her sense of orientation and place. So, although she has been in the care home for two and a half years, she doesn’t recognise it. Pre-diagnosis mum was already experiencing a loss of orientation, unable to venture out to new places on her own. She was petrified at the prospect of travelling by train from one location to another, even when being dropped off and collected at each end.

When I visit her, usually in the afternoon, I first listen carefully as she describes her anguish. She explains how she feels and why she is distressed. She often can’t quite find the right words, but short phrases reveal her lack of orientation and the resulting deep insecurity. Recently she told me,

“The general [view] conception is that I am staying here…. I suppose I am frightened, I am frightened of being accepted to this group. I don’t know where I am, and I don’t know anybody. I am just frightened. It is something new … I feel I want to cry my eyes out. …[crying] I am sorry if it makes you feel horrible, it makes me feel horrible too. But that is the only way I can have you to take me home. I don’t know how to get back from here to Bridgend or to….”

After describing how she feels, mum is usually able to relax into whatever I have planned or even just to spend time at the home and in the garden.

In a public space

The problem for mum, is that when she is in the living room in the care home, she thinks she is in a public space. She describes the other people there as strangers, though she does recognise them. She doesn’t realise she has a room there, even moments after leaving it. When we are in her room for a while she doesn’t know what is outside the door. Disorientating doesn’t begin to describe it.

When family members are with her she feels safe, and then the horror starts again when we say we are off. With a look of shock on her face, and tone of incredulity she often says, ‘Are you leaving me here?’ as if we are leaving her in a public space. She asks where she will sleep, unaware she is sitting on her bed and that we are in her private room. She asks if I could just drop her home.

She lives in groundhog day, every day having to reorient herself to her ‘new’ surroundings.

Frightened about being on her own

My mother is aware that something is wrong with her brain.  Given this, its understandable she doesn’t want to be left on her own to fend for herself. Recently she said, “I don’t feel I can operate as I used to. I am nervous. I feel so frightened. I am frightened all the time. Frightened about being on my own.”

Staff try to reassure mum about where she is, that she is safe, and that one of her daughters is coming to visit. If they do this early and often enough they can divert the extreme distress and hopeless resignation that will otherwise follow. When mum is engaged in relevant activities that are meaningful to her, she is able to be in the moment with less time to ruminate and worry. Unfortunately, there aren’t enough activities at the care home that are relevant to my mum. Too often she feels alone amongst strangers.

She is often distressed or resigned. According to recent reports mum still has an emotional meltdown around once a week, usually when she discovers she can’t leave the care home. The management at the care home believe nothing more can be done to alleviate mum’s distress.

Bringing mum home

So finally, we are going to try something different. We had a Best Interests meeting to discuss other options for mum last week. With an Independent Mental Capacity Advocate, social services, care professionals, my sister and husband, we agreed I will support mum to live back at her home for a trial period. Living with her she won’t have to feel she is being left in a public space, and hopefully she will feel more settled and comfortable. If the trial works, for both her and me, we will give up her room at the care home and continue to live together.

This decision has been a long time coming. I am relieved with the outcome, but naturally a bit worried about what it will mean for me. I will write more on this soon.

11 thoughts on “Mum’s Groundhog Day

  1. Wow Julia, you’ve decided to go for it. I’m very happy for you – I know that sounds a bit odd but I know this decision has been forming for a while and it must be a great relief to finally have the chance to see how it works for you and your mum. I really hope it goes well. You need and want to know you are doing the best for June and are in my thoughts, all best luck for this new adventure with your mum. In being willing to try, hopefully you can help her.

    Sent from my iPhone

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  2. Clare, thank you so much for your very positive response. I feel so relieved the decision is finally made with the support from all the professionals (apart from care home management who think its bonkers – I hope to bring them round as I will need their full support if mum needs to move back).
    I have a couple of months grace to fulfill commitments and get things ready.

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  3. Best of luck. If you can get some part time work to help with the drudgery (cleaning, ironing etc), that might help with the extra commitment you arr taking.

    Always remember, this isn’t an exact science, you are making a difference and that, as your blog implies, your mother’s needs are best served by balancing your needs and hers. It willbe possible, particularly as she gets worse, that she may need to go back to the home. That decision will need to be made with the head and not the heart.

    All the best.

    Liked by 1 person

    1. Thank you for your wisdom and experience, Hugh. As ever, hugely valued. Yes, will need lots of support to make this work and am considering how I do that. Getting a cleaner is a good idea. In fact I might be able to get mum’s old cleaner back which would be amazing. Yes, I know I won’t be able to support her into the later stages of dementia. In fact, the long term is unsustainable for me too, as it is keeping me away from my beloved husband, who I miss hugely. So back to a home is definitely on the cards but I am hoping I will be in a better position to give really clear guidance to care staff, that if followed should keep mum much happier, than previously.

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  4. Gosh – that really is a massive decision and one that must have taken a lot of soul-searching. The way you describe your mum’s distress is so poignant and I can see that witnessing this level of upset every time you visit must be equally horrible for you, which presumably is why you’re doing what you’re doing. I’m really impressed, a lot of people (and I wouldn’t blame them) would simply be unable to take on the role you are about to. Keep us all posted and if it does all get too much and you have to change tactics don’t beat yourself up too much – we are all just doing the best we can with a crappy set of circumstances.

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    1. Thank you ‘mumhasdementia’ for reading the post, sharing it on twitter, and for your very supportive comments. Yes, it really is a big deal. I am already living away from my husband and my home in Brighton, and while I am in limbo I have let my work slip – normally very motivated by my work. I was originally living here in mum’s house until she settled into the care home, but it is clear she is not going to settle. I think she is probably lucid enough to be very unhappy about her situation, but when she is occupied with me she is generally calm and content. When she is further down the road it might be easier for her to be in a care home. I don’t know, but I do know I can only make this commitment for a limited time. I agreed with my husband a year, so we’ll see how that goes. And in the first instance I am trialing it for a month.

      Yes, you’re right it may not work for her or me, so I will have to face up to that and not beat myself up. It is difficult to just relax with mum, she normally needs to be occupied, something I felt the care home didn’t do adequately, so I will be getting in help otherwise I know I wouldn’t be able to cope. Also I am getting lots of practical and other support from social and health services, which I am very grateful for. I am going to use my mindfulness practice to keep me sane, and to help mum live more in the moment with less time to ruminate. I hope to post updates to report how it goes, that is definitely my intention.

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  5. Such eloquence Julia. My mother-in-law is in the same state and currently being looked after by her husband at home, but at great personal cost. It’s an enormous societal challenge that society doesn’t want to acknowledge. Enormous respect to you and your siblings, and good luck!

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    1. Thanks so much Megan. Yes, it is a huge challenge. I wonder how people manage who don’t have family caring or fighting for them. I hope your father-in-law has practical support and lots of breaks, and that he is aware of the basic principles in dementia care that help avoid confrontation and unnecessary distress. Do let me know (by email) if there any topics that you think he might benefit from practical tips and I will send links?

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  6. I wish you and your mum all the best. It must have been a very difficult decision and I hope it is successful.
    I appreciate your posts and as someone who is in a similar situation to you I respect your honesty when you describe some of the things you are going through, especially as it can be so difficult to talk about.
    Very best wishes, Sally

    Liked by 1 person

    1. Thank you Spicy Philosopher. Yes, it is difficult at times, and I am at times fearful about the next steps, but it’s not all bad. Sometimes I feel my life is on hold, but others I think this is my life, and its my job to make it is as meaningful, worthwhile and fun as it can be. Speaking of which, I realise I need to get some creativity into my life, especially when mum comes home, so I will keep following your blog for good ideas.

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