A few weeks ago I hit rock bottom. I felt absolutely unable to keep going; I had nothing left to give. I realised I had had no respite from caring for Tony in well over a year. We have been away together, but that is not a break for me. In reality, it’s just more of the same.
I woke up one morning and knew I had to do something about our situation, urgently. Broken sleep is tough when you are young and have babies and small children. Night after night of broken sleep when you are 60 has to be a potential killer.
I rang a local nursing home and booked Tony into respite care that same day. Of course, he was furious with me. I pointed out that a week in there so I could recover was a much better option than if I collapsed and he was permanently in care. Tony’s instinct for self-preservation is still very strong, despite the dementia, and he quickly saw the sense of this.
Isolation
I spent the week in an isolated cottage in the Scottish borders with our dogs. How I managed the drive I do not know. I was half crazy with exhaustion. I managed to unpack the car and close the cottage door behind me before I started to cry. I do not cry very often, but this was unlike anything I have ever felt.
It was as if not just my heart was breaking, but that I was being torn apart by the sheer force of my sobs. I was literally howling. Loss, pain, anger, grief, frustration, loneliness: months of negative, destructive emotion came roaring out of me. Emotion I had kept tightly reined in, so I did not frighten or upset Tony.
By the time I brought myself back under control I was on the floor, my nose bleeding, my throat sore and my chest aching with the effort of breathing. My poor dogs were trying to nuzzle me and lick the wreckage of my face. All I could do was crawl into bed.
The next day the wind was up and the rain was hammering down. I decided to go to the coast. I love the beach in rough weather. The raw power and exhilaration of the breakers lifted me out of myself and soothed my wounded spirit. It was the perfect antidote to the night before.
I spent the next few days just pottering; going with the moment and what I wanted to do. The sun came out, so I had lots of long walks with the dogs. I found a brilliant bookshop, too good to resist, and spent the evenings curled up in front of the log burner with a book and a glass of wine. I returned home feeling so much better. I had needed time and space and the opportunity to be solitary.
Of course, once I was at home it was straight back to the usual routines, but in a much better frame of mind. Not being tired was a huge bonus.
Tony was pleased to see me when I went to pick him up. I think we both benefited from the break from each other. My ill temper and sarcasm were not of any help to either of us.
A few days after this was the official launch of Dementia Friendly Todmorden (DFT), an organisation I have helped to set up in the town where we live. As with all these things, there was last-minute running around and the occasional frantic communication. On the day, it was wonderful. The town hall was packed and the number of stalls meant our plans for a one-stop advice centre were realised.
I remember just how hard it was to join the dots when trying to access support, care and advice for Tony when he was first diagnosed with dementia. It is an isolating experience.
I believe it is so important to reach out a helping, friendly hand to others in the same situation and hopefully make things easier for them.
One of the interesting and probably most beneficial outcomes of having so many different organisations in one space is that they talked to each other.
This sort of networking is not rocket science, but for many of the people there it was, in some cases, the first time they had heard of each other, let alone spoken or collaborated.
Most of them asked if they might come to future DFT meetings, so they could stay in contact and work with each other. We have now become a catalyst for joined-up thinking and further grassroots activity in our area, helping and supporting people with dementia. This has to be a way forward.
Steph Booth lives in the north of England with her husband, the actor Tony Booth.