How I am coping with lockdown
Unlike most of you, I am no longer caring for my husband, Duncan, at home. He went into a care home in October 2019 and I haven't seen him in person since 13 March 2020 when the care home closed to visitors.
In some ways it is very difficult: I know I can't control anything myself and have to totally trust the care home for his physical safety and emotional health. There are no hugs, shared memories as we chat; no chances to celebrate anniversaries or discuss news about the children. I can't imagine how he feels or give reassurance. Phone calls are hit and miss and skype can reassure me only if he holds the carer's iPad at the right angle!
On the other hand, I only have to care for myself - which is a lot easier! I cope with my new marital situation by accepting two opposing things - I have no control over Duncan's well being; but I have to control my own well being in order to help him when I do phone or Skype him.
As carers of loved ones with dementia, we do have some advantages over the general population in this lockdown situation. We have already learnt how to live in a less social way, confined to a few rooms; we've had to slow down and reduce our future expectations; and we know we are in it for an unspecified but long time.
A course I attended for carers before coronavirus was incredibly useful. It was called 'Reclaimimg Me: Managing life following change and loss'. Until then, I hadn't understood that I was living with 'ambiguous loss'. As carers of Loved Ones with dementia, we are grieving gradual losses all the time. This knowledge allows me to give myself some slack when I feel angry or grieving-and to treat myself as I would a grieving friend rather than feeling guilty! An important resource was the book Loving Someone who Has Dementia' by Pauline Boss which I found very readable and immensely helpful.
We all know the drill - eat a balanced diet, drink litres of water, exercise, have enough sleep. A routine is also important for our loved ones. I have the opportunity to go out for an hour's walk each day so that has been amazing. I use the walk to take notice of things-sometimes photographing birds or trees. This raises my mood, gives me new things to engage my brain with as well as exercising muscles. I have used a free app called FreePrints to produce a photo book which I can then share with Duncan.
I have found a large whiteboard and drawn colums on it - morning, lunch, afternoon, evening meal, evening. It takes the busy thoughts from my head and allows a routine to develop in this uncertain time! I fill in daily routines-exercise, walk, ring Duncan, watch TV and allow some free time to do something for me. I have been watching free National Theatre plays online, singing along with Rock Choir, joined in my old exercise classes on Zoom, and been to a virtual book group discussion. There are many free cultural opportunities-I am having a virtual tour of Blenheim later! Also-timetable in some rest time-the days can seem long-no shame to rest for an hour listening to music or the radio-or knitting!
It's important to stay as connected as you can in these times. Phones, computers, skype, Zoom and old fashioned written letters and postcards brighten everyone's day. I 'speak' to my children daily by WhatsApp - different to my weekly phone calls to my parents decades ago - but I feel connected to what they are doing and thinking about. I have also arranged to meet friends on real walks - two metres apart of course!
As well as family, you might need a psychological family - a network who understand your situation and won't judge. YoungDementia UK could help, Age Concern have a helpline, and in the middle of the night...I have called the Samaritans and they will listen and help when others asleep!
Resilient really means emotionally stable-able to adapt to changes. You can do this-you have proved it by the fact you are a carer! As mentioned before, acknowledge the incredible task you are dealing with and the fact that you are doing this as well as grieving for someone who is still here!
It has helped me in emotional times to write a journal. It kept me going through cancer and the deaths of three family members. It's one way of pouring out those feelings in a safe way. Another helpful idea is to write down three positive things about that day on a post it note and put it in a jar. At the end of the month, stick them in a book and realise there have been good times too.
The most helpful things on a personal level have been having a timetable, talking to at least two people a day in some shape or form, prayer, being out in nature walking or gardening, reading, music - my Echo Dot plays whatever I ask! - a few minutes on a mini trampoline, things that make me laugh, relaxing baths, growing plants, learning something new; I'm tying to learn Italian with Duolingo.
We are in a sort of cocoon stage at the moment - hopefully we will all emerge as beautiful resilient butterflies!
- Caroline lives in Oxfordshire and is supported by YoungDementia UK