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.