Now I have adequate time off and enough sleep, the biggest issue I face is how to support mum through times of emotional turmoil. The turmoil is not only felt by her. When mum dips into despair or becomes greatly agitated, I experience a surprising range of emotions. Empathy, compassion and concern for mum are usually my first responses; but not always. Sometimes I feel upset with her, and I can react negatively.
This troubles me because the worst thing you can do with someone living with dementia is to create an environment, however fleetingly, where they feel unwelcome, unsafe or uncomfortable. As they are increasingly unable to record new facts, they won’t know what caused the distress, but they will feel something is wrong. Feelings are more important than facts, as dementia care experts stress (1).
Caught Up in the Maelstrom
For example, a few days ago, mum said she felt she was imposing on me; I had things to do, places to be, and she didn’t understand why I had taken her in. She was miserable. What compounded her insecurity at the time was that she didn’t know I was her daughter. “I have no relatives that I know of and am not feeling like I belong.” She remembered that her sister had children but didn’t think she herself had any. As I’ve learned before, there is no point telling mum I am her daughter at such times. She looks bemused or confused, and certainly not reassured.
In moments like this mum’s statements can feel like a reprimand to me, an indication I am not doing a good job. I was bewildered about her feelings that seemed to emerge from nowhere. I was upset she was unhappy with me, and cross that however much I did, it wasn’t enough. I was also perplexed about where her feelings came from and fearful about how long they would last. Moments later, I felt such deep concern and compassion for her, that I welled up with tears as I tried to comfort her.
Often, I get completely caught up and carried away in this maelstrom of emotions: feeling bad, reacting automatically, and trying to fix things.
Trying to be Mindful
Yesterday, when emotions ran high I tried something new. After lunch, mum normally likes a nap, either in her bedroom or the living room depending on where she thinks she is. Having said she would lie down in her room, she started talking about wanting to go home again. When I said I would take her after her nap, she was adamant she didn’t want me going out of my way. She insisted she would drive or catch a bus. Whatever I said to reassure her, that her home was on my route, that I was planning to spend the day with her, that I had no other plans and how nice it would be to go for a walk first, she was clear she didn’t want me running myself ragged.
I was disappointed that I wouldn’t get my short break after lunch, but I could see that staying at home wasn’t helping. Though mum was still feeling miserable, she agreed to come out for a walk. In the car, mum continued to explain what was wrong. This time, instead of trying to fix things, to reassure her or to say anything at all, I simply focused on the physical sensations of my breath, as my mindfulness teachers have taught me to. The book ‘Mindfulness: Guide to Finding Peace in a Frantic World‘ trains us to tune into the movements of the breath in the lower abdomen, when we catch ourselves in automatic mode or becoming reactive. I am normally so caught up in mum’s moods I rarely remember this.
Mum’s words and agitation repeatedly pulled me off centre, but I kept returning to my breath. Gradually I started feeling calmer, and less swept up by mum’s emotions. After a short while I was able to respond from a more stable place. I felt less like I was responsible or had to fix things, and mum grew calmer too. I don’t know if my inner state helped to stabilise her; it could have been the effect of the walk, or her mood changing naturally over time. I am not sure, but I do know that remaining mindful helped me. So, I will be trying this again.
- “Feelings Matter Most” is front and centre of Dementia Care Matters’ philosophy. “Feelings are more important than facts”, is also a fundamental learning point in the methodology of the Contented Dementia Trust.
PS: I am delighted to be speaking about my experience of supporting my mother through her emotional pain, on a panel hosted by Dementia Care Matters, at this year’s Dementia Congress (pdf). The session entitled, ‘“I want to die” – finding a way to be alongside deep emotional pain in dementia care,’ runs as an alternative workshop to the main plenary session at 11 am on Thursday, 8 November.