Last Friday, my mother moved into a new room on a newly created lower ground floor in her care home. Having created the new floor, the care home sought to separate residents so that those who had ‘nursing’ needs above usual dementia support, stayed on the original floor. Nine residents including my mother were moved to the new floor.
Moving someone with dementia
With dementia, any move can add to a person’s sense of confusion and disorientation. Given this, I was surprised at how little advice I could find online for moving someone within a care home. I resorted to ringing two dementia helplines. The first didn’t really know and referred me to a local number. The second, the Alzheimer’s Society National Dementia Helpline, provided some general common-sense advice:
- Do the move at a time when she’s at her best;
- Move her personal objects to the room first, so they are there when she first arrives;
- Put nice smells that she likes in her new room;
- A relative should be with her for the move.
The advisor couldn’t find an advice sheet specifically on this topic, but she directed me to a helpful more general guide for making a dementia-friendly space (PDF).
More relevant for the move is a section entitled ‘Moving between care homes’. It suggests planning the move, being positive about the move and giving the person with dementia as much choice as possible.
Moving a person with dementia without considering the potential impact on them has caused unnecessary distress for some people. This was the case for Ming Ho’s mother, as her daughter recounts here. Tragically, the unplanned and insensitive move precipitated sudden illness and a steep decline for the elderly, frail woman.
Originally, the care home said there was an opportunity to move my mum downstairs onto a new floor, and asked if we wanted to take up the offer. We declined. Then, several weeks ago, the care home urged us to attend a relatives’ meeting. The relatives of nine residents were first asked to air our concerns about moving our relatives, before being politely told we had no choice in the matter.
Apart from wanting to avoid unnecessary disorientation for my mother, I was conscious the new floor is smaller, with less light and much less communal space. In addition, the communal garden is not yet complete so in these unusually warm summer weeks my mother won’t have direct access to the garden. She always wants to get outside for a walk, and over the last few months had become increasingly agitated and distressed when she finally realized she was locked in, as I describe in a previous post. This sense of being imprisoned is bound to be more acute and oppressive on the new floor, where there is only one corridor, lots of doors that you can’t get out of and no access to the outside.
I had to leave the relatives’ meeting early, and made a fleeting attempt to organize a challenge to the move with the other relatives, who had seemed as opposed as us. However, I soon learnt that at the end of the meeting they had all been invited to choose their preferred rooms for their loved ones. With other relatives staking their claims, we felt we had had no choice but to work with the home to make the move as stress-free and positive as we could.
Of the rooms left we could choose between a small dark room with a poor layout and an ensuite toilet, or a bigger, light and airy room with a long walk to a shared toilet. My sister, Christine (pictured), and I agreed that Christine should take mum to the two rooms and find out which she preferred by pretending Christine was going to stay in one of them. We feared telling the truth, as the prospect of staying anywhere alone scares my mum, and after almost two years she still doesn’t seem to realise that she is staying in the home. Mum chose the room with the toilet, so that is now her new room.
Getting the room ready
Over the last couple of weeks, I have been working with the management of the home to get the room ready. Below I list the improvements and the reasons:
Arrangement of room
The room has been rearranged so we can get maximum use out of the space and views of the trees outside. This involved decoupling the wardrobe from the wall where it had been chained for safety, and re-chaining it to the opposite wall. Now there’s space for two comfy chairs facing the glass doors so mum can look out at the garden. Before the room change, the local hospital consultant responsible for mum, Dr. Colgate, had suggested we create a ‘safe space’ to help address her ongoing distress. Having the bed and chairs facing the trees and outside view felt important for this.
The light fitting has been changed from a single bulb in a traditional shade, to an IKEA ceiling light with five spot lights. Making the room lighter was not only an aesthetic consideration, but a practical one. According to the Social Care Institute for Excellence, “Ageing eyes need twice as much light as young eyes – and people with dementia need even more”.
Nice smell and sound
A good quality scent diffuser has permeated the room with a rose-like smell suggesting the outdoors, and contributing to the ‘safe space’ we are trying to create. As some senses deteriorate, other senses become more important and it is important to provide for all. For this reason, she also has a CD player with calm relaxing music and church hymns. She can’t turn it on by herself so staff turn it on for her.
Mum’s favourite family pictures have been grouped and hung over her bed and a big family portrait further down the wall. I have carefully avoided family photos over the thirty-year span that my brother Tudor was alive. Unprompted, she doesn’t remember him, and reminders are unnecessary and painful.
Familiar and meaningful objects
Mum’s wooden crosses adorn the wall and surfaces. As a committed Christian she liked to say her prayers facing a wooden cross. She can’t concentrate now, so doesn’t have her morning prayer sessions anymore, but they provide an important connection with the church. Her prominent brass lamp stand and shade is now lighting up one dead corner. Also, placed around are a few familiar items of furniture and ornaments that have been in the family for decades.
Clues that it is her room
Mum often thinks her room in the care home is mine, or Christine’s. So, to provide a clue that this is where she sleeps, I often drape her old night clothes or dressing gown over the end of the bed. This sometimes gently prompts her that this is where she is sleeping, and consequently she has become less agitated when I leave. I had made repeated requests to put up a hook on the outside of the bathroom door in her original room, so mum’s dressing gown could be placed in a prominent place. This never happened as there seemed to be some bewildering concern about marking the door. This is now solved in her new room, where she has a set of hooks hanging over the door.
The one upside of the move is that the mum has left behind residents who have more advanced dementia, and whose behaviour can be disturbing. Also, the home has assigned only regular staff to the new floor, instead of new staff. So, despite the move everyone is still familiar to my mum: the staff, other residents, and even the relatives of those residents. Although her short-term memory is hugely impaired, she recognises people, even relatively new people, if she sees them regularly enough. This constant has been a hugely beneficial factor in creating a seamless transition.
How did the move go?
Over the last couple of weeks I got quite concerned about the impending move, while my mother remained oblivious. So, in the end how did it go and what does mum think?
On the day of the move, I tried to frame the move to mum in a positive way. She often believes she works at the home and complains that the work is too demanding for someone of her age, qualifications and abilities. In fact, she frequently tells me she has handed in her notice. So, I told her that now she has retired she can at last relax in this new quieter room away from the demands of her old job!
The actual move happened while mum and I were out. When we came in we simply went to the new room. To be honest, I am not sure mum noticed the transformation. She likes the room, but doesn’t want to be left there on her own. So, no change there. She never recognised her previous room at the care home. And for that matter, on her last morning in her former home of twenty years, she didn’t recognize that either.