A Carer is Not Allowed to be Ill

On Christmas Eve 2023, two weeks after his DAT scan and three days after his MRI scan, Chris fell out of bed and couldn’t get himself up. He was very confused, and I dialled 999 for help. The paramedics arrived within 20 mins. These wonderful people got him back on his feet, helped him to the bathroom, and then back to bed. They submitted a referral to the falls service, who actually phoned later that day to apologise that they couldn’t make a home visit on Christmas Day! Suddenly we felt that our concerns were being taken seriously. Then on Christmas Day 2023, we both tested positive for Covid.

The presents for the grandchildren were left safely outside to be collected, and we quarantined ourselves until further notice.

I think this was the first time that one of the realities of being a carer struck me with such brutality.

A carer is not allowed to be ill.

We were both poorly. This version of Covid seemed to give rise to record breaking congestion and coughing. But I was just about able to get to my feet, make drinks and organise food and medication, so I had to carry on. A few days later, I tested negative, but the virus lingered in Chris’s immune compromised body for more than two weeks.

In early January 2024, I intercepted a letter to Chris which appeared on the NHS ap…no phone call from the hospital, no appointment with a Neurologist, no conversation with our GP, just a stark digital letter.

‘Regarding your DAT scan this demonstrates asymmetrical reduced uptake of tracer within the striata, with right-sided changes more prominent than left. With increased background uptake. This appearance is suggestive of a loss of presynaptic dopaminergic terminals…..I believe this will make a diagnosis of Parkinsonism with Lewy Body Dementia.’

Chris was asleep when I read the letter. I cried for an hour, then made Chris a cup of tea and broke the news as gently as possible.

Comments

Where is the Beginning?

When a patient and carer finally meet a consultant or specialist nurse or similar to discuss concerns, one likely question asked will be 'When did this begin?' This question has been posed to me many times over the years, and I never know what to answer. This is because there was no clear starting point for my husband's symptoms. They just crept up on us. I can look back and remember significant moments, but unlike birth and death or divorce or breaking a bone, neurological problems tend to emerge over time. So before I post my husband's current and complex diagnosis, let's journey back in time to a significant moment ten years ago. I call it significant now, but at the time it was just something that happened. The year is 2014. My husband Chris and I are living in a large bungalow in Bexhill with about a quarter of an acre of garden. Chris was diagnosed with type 1 Diabetes as a younger adult, and his eyesight has suffered. I had also noticed his ene...

In An Emergency

One of the most stressful things about the role of ‘carer’ is the unknown. You never know what’s round the corner. This of course applies to everyone, not just carers, but when you are looking after someone with a degenerative health condition, the risks of unexpected crisis are much greater. Crises which involve falls, hallucinations, problems with medication or paramedic intervention are always stressful. The stress cannot be avoided. But over the years I have learned to mitigate the stress to a certain extent. This is my learning so far… 1. I don’t let the fear of a crisis stop me from leading an interesting life. If a crisis happens, I just have to deal with it. 2. I try to keep the pace of my life manageable. I build in gaps between activities to give me time to deal with the unexpected. 3. . If I am booked to do something really important, I have an emergency plan in place eg a helper...

Re-inventing Myself

Caring for someone with Dementia takes a lot of time, as many tasks are no longer shared. I now organise the medication and appointments, fill in the forms, sort out the diary and finances, as well as having sole responsibility for all domestic tasks including shopping and preparation of meals. On the whole, I don’t mind, though I’m not a great lover of domesticity! So my resolution last year for 2024 was to re-invent myself in order to cope. I gave up some of my voluntary work and only retained those activities which I enjoyed. I tried a few new things, some successful, some disastrous, and, when we could afford it, I bought in some additional help. Being a carer can be quite isolating, so getting out and meeting people was and still is an essential part of my survival kit. Sometimes I've had to show great strength and insist on time for myself. Chris and I had done so much together in the past, and he found it difficult to understand that he couldn’t always accompany me anymor...

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