The worst part of every encounter with my mother comes when it is time to say goodbye. I sometimes stay at the care home much longer than I planned, trying to find the best moment to go. When the time comes she often seems surprised, and asks, ‘You’re not leaving me here on my own, are you?’ or ‘Would you just drop me home?’ The feelings triggered by my departure can escalate to full-blown anxiety and distress, and I then blame myself for not handling it better. Driving home, I have twice turned around and gone back to make sure she was OK.
Today’s goodbye followed a trip to the local church, near her old home. When I arrived to collect her, she was slumped over and sleeping in a chair in the dining room. On waking she seemed flat, but nevertheless was clear she wanted to go to church. Up until recently, I arranged for mum’s former cleaner to take mum to the church services that she used to attend, pre-dementia. But as the woman no longer has transport, mum’s church trips are much less frequent.
After communion mum looked at me and mouthed quietly ‘Thank you Julia,’ as she has done previously when I brought her to church. It reminds me, if I needed reminding, how important church is to her. It has been the one constant in her life. She has contributed so much to her various churches: taking Sunday school; providing counselling; and welcoming new people to her church during 20 years in Hong Kong. She also turned to, and got support from, the church and its community, in times of personal crisis.
After the service, a few of her old friends came over and made a fuss of her. She became emotional, and so did I. We were both in tears.
Time to go
After taking her back to the home, having a coffee together in the garden, and then waiting until she fell asleep in her room, I was ready to leave. I left quietly, but made a noise as I was closing the door, then checked to see if I’d woken her. I had. She was immediately alert, and wondering where I was going. I explained lunch would be ready shortly and my sister was coming in later. She didn’t want lunch and said she would prefer to come with me. I went back in and sat with her, as I tried to work out my next move.
Contented Dementia Trust advice
The advice from the Contented Dementia Trust is to avoid saying goodbye altogether: to try and create the impression that you are always there, or nearby. For example, you should plan to arrive at the care home without your coat and bag – leave them in the car or at the entrance. This helps to make it appear that you have come from another room and that you were there all along. When departing, be casual and try to make out you are just popping out momentarily, or perhaps going to the loo.
For my mother, I discovered these techniques don’t always work, and I fear undermining her trust:
- Even without coats and bags, it is difficult to arrive casually. Care home staff and relatives of other residents compete to be the first to tell my mother that I have arrived. They do this because my mother has been telling them she is worried about where her daughters are, and that she is keen to get in touch with us.
- When I leave, I have tried saying, ‘See you later,’ until one day I realised mum sometimes waited for me to come back. One day, mum told me she had waited hours the night before. She asked me why I didn’t tell her I wasn’t coming back.
Advice from others
Feeling a bit wobbly about all of this, I phoned the Wales Dementia Helpline today. The service is both for people living with dementia and their families and carers. The woman at the end of the line listened attentively, and then gave me some guidance. None of the advice was particularly new to me, but nevertheless it was helpful to have it reinforced. She suggested:
- Listen and empathise with the person;
- Maintain eye contact;
- Reassure them that you are coming back.
Also, some good general advice from Teepa Snow, applies to any situation where the person is distressed:
- Acknowledge the situation is hard for the person with dementia, and let them know that you find it difficult too.
Dementia Challengers (a now defunct site) suggest:
- Wait until there is some activity such as a meal or bath time ‘to provide comfort and a little distraction as you take your leave’.
Finally, a great short summary on YouTube from Alzheimer’s Society of Ontario. It repeats some of the above, and sums up neatly with explanations, the following advice:
- Give a reason for your departure e.g. you need to go to the dentist.
- Coincide your departure with an event for them e.g. lunchtime.
- Make a quick exit. Don’t drag it out, as it can be more painful.
- Don’t use the word ‘Goodbye’.
Today, what facilitated a smooth departure for me, was gently telling my mother I had some work I needed to do. Instantly her natural desire to take care of me took over. She softly, yet firmly told me I should go, and that she would be OK. So, I went, after reassuring her again that I would be back tomorrow. Of course, I don’t know how she felt after I left, but I like to think that taking charge helped her in some way.