Fast Forward to 2023

Even after a visit to the GP in 2014 to explore the possibility of Parkinson's, medical opinion at that time was that Chris’s symptoms were a likely product of Type 1 Diabetes. After something of a battle, Chris was referred to Kings College Hospital and given a sensor insulin pump which alarmed if his blood sugar dropped. It was a life changing piece of equipment, and we were both trained to use it. I became an expert at ‘rewiring’ my husband.

And so we reach 2023. Lockdown is over, and I have increasing concerns about Chris’s mental deterioration and his decreasing mobility and dexterity.

We have moved to a large ground floor flat closer to the town centre, so that I no longer have a lawn to mow, and Chris can walk into town. However, his balance is poor, and he starts to walk with the aid of a stick. I buy him a small mobility scooter on Ebay.

At his 6 monthly appointment with the Diabetes Nurse in early 2023, the nurse refers Chris for a Dr’s appointment to discuss his mobility. A young locum phones to talk to us, and Chris actually gets a ‘face to face’ appointment the very same day. His cognition, movement and dexterity are scrutinised. He is referred to the specialist memory nurse, and for an appointment with physiotherapy. This leads to an MRI scan on his spine (nothing of significance shows up) and FINALLY a memory clinic appointment and a referral to a neurologist.

The memory clinic comes first. Chris is assessed on the Addenbrooke’s scale and comes out with some indications of dementia. The Dr explains everything very clearly.

‘Your husband’s cognitive profile is unusual. His short-term memory is not too bad, but he is finding it hard to process language. Something is going on here, but I’m not sure what it is. I don’t think it’s Alzheimer’s. Combined with his mobility issues, we could be looking at a diagnosis of Lewy Body Dementia.’

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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