John is 81 and was formally diagnosed with mixed dementia (Alzheimer’s and Vascular) about 6 years ago. Until 2019, we managed well and I was able to leave him for periods during the day. I was still working as a voluntary chaplain at St Kentigern’s Hospice and was also sitting as a lay member on the Mental Health Review Tribunal for Wales.
As a couple we still were able to enjoy regular outings and we attended church (St Asaph Cathedral) each Sunday. We were also able to meet up with our three sons and their families (we have seven grandchildren). One lives in Hoylake, one in Bristol and one in Sussex.
His condition deteriorated during the year and I was no longer able to leave him home alone. He also showed signs of “sundowning” and during these periods would want to “go home” which for him meant catching a train to London. These times were particularly difficult to manage. He would take himself up the drive, I would follow at a discreet distance to ensure his safety.
I had a carer’s assessment and was found to be eligible for direct payments. This was wonderful. I was able to recruit two wonderful carers so that I was able to continue with my life knowing that John was safe and happy in their capable hands. His condition further deteriorated to the point where he was becoming extremely anxious and agitated. I was allocated a social worker who advised that I would be entitled to regular residential respite care for John.
A review with the consultant was advised and an appointment duly made.
But then we went into lockdown! Although we could not attend in person for the appointment with the consultant a telephone appointment was made. I felt he really listened to my concerns. He advised an increase in his medication and following that I had regular calls from the nurse at the memory clinic. The social worker also rang on a regular basis. Of course the carers who had been looking after John were no longer able to attend, and there was absolutely no access to residential respite care. Fortunately, we live in a wonderful old Hall that is divided into flats and is set in extensive grounds looking down the valley with Moel Famau in the distance. There are only six of us who live here on a permanent basis and we were well supported by our neighbours. We had always been keen walkers and John was still able to manage to walk on the flat for about ¾ of a mile round the block each day. He had no concept of what the pandemic was all about or why he couldn’t venture further to see our family (all of whom live in England).
I didn’t go shopping and for the first 7 weeks had to rely on a friend to shop for me as it took 7 weeks for me to be able to get an online slot. That in itself was frustrating, but I felt I just couldn’t cope with the stress of leaving John in the car while I shopped. And by not going out to the shops etc., the feeling of isolation was compounded. Loneliness / isolation is a strange thing as even in a crowded room you can have such feelings.
I had been involved with the Alzheimer’s society and also with TIDE (Together in Dementia Every Day) prior to lockdown and so continued to be involved via ZOOM. These meetings were, and still are so helpful in terms of both support and advice as well as being socially enjoyable.
We were also able to watch the Sunday services from the cathedral via Zoom, and this I found had a particularly calming effect for John.
John had been due to have eye surgery prior to lockdown and fortunately this was able to be undertaken at Abergele. He also required dental treatment and again this was made possible. In both cases the care and support at the hospital and dental surgery was excellent.
As the weeks and months passed I was eternally grateful for being able to spend time in the garden in the glorious weather we were blessed with. And even though we had our neighbours I felt isolated at times. Our three sons phoned regularly, one of them phoning daily. But it was quite emotionally draining trying to remain positive when inside I’m grieving for the person who has been my husband and strength for 54 years.
In July Safe Hands a small independent day care facility in Trefnant reopened and John was able to attend. He settled well and attended twice a week. This was wonderful for both of us, and I was able to get out for longer walks which is my way of relaxing and re-energising, fortunately the facility has remained open ever since. John now attends 3 times a week.
Then out of the blue I had a call from St Kentigern Hospice offering me a week’s respite! The hospice has an Admiral Nurse working with them and also a respite bed for dementia patients. Due to lockdown they hadn’t been able to start this new service and needed a guinea pig to trial it! John received the most outstanding care while he was there and I spent a week with my youngest son and family in Bristol. It was heaven sent!! I came home with my batteries completely recharged
Christmas of course was a great disappointment for thousands and we were no different as we could not spend it with family as planned. And the winter seemed to drag on making this lockdown seem much harder than the first when we had glorious summer weather
Coming out of lockdown
It’s been wonderful to have a bit more freedom in so far as being able to go further afield for walks and meet up with friends outside. But as far as John is concerned nothing has changed. I still don’t take him anywhere where there are likely to be too many people as he still has no idea about social distancing. We still don’t attend church as I just don’t want to be in the situation when I have to keep telling him what he can and can’t do with regard to the Covid regulations in place.
John has become more agitated again recently and once again I was able to have an extremely helpful telephone consultation with the consultant who recommended another medication to be used at my discretion, and so far so good!!
The routine of the past year has been so set, which in many ways has been good for John, but it means that any changes to that will need to be introduced slowly and carefully.
Sue Last, May 2021