Skip to main content

Coping with a Diagnosis

 I had known for many years that Chris suffered major health issues, but even so the diagnosis of Lewy Body Dementia came as a brutal shock. The likely future symptoms were scary, and, combined with Type 1 Diabetes, I knew we were in for a bumpy ride. For the first three weeks after his diagnosis I woke every morning unable to hold back the tears. I had been assaulted by a psychological car crash, and my mind and emotions took a while to adjust. At the end of three weeks, I began to take myself in hand. I decided the only way forward was to take control.

I joined a fundraiser for Dementia UK which involved walking every day in February and raising funds for the charity.


I bought some new clothes (any excuse!) and promised myself I would look after my appearance. I contacted friends and ensured my social life was still intact. I joined a carer's group and the Bexhill Parkinson's Cafe. I kept up some activities I had previously enjoyed whilst ditching the ones I disliked. I researched available support and financial help and wrote a timetable of tasks to ensure we would receive our entitlement, however limited. I'm not suggesting it was easy, but activity undoubtedly held me together at a very vulnerable time. I also made a firm pact with myself that, if I was to be a good carer, I would need to set aside some time out for my own needs. 
My journey in 2024 was centred around adjusting to my new role. There were of course ups and downs. Some plans made a positive difference, some were disastrous.
Future 'I Care' blogs will be about sharing the good and the not so good         

      

Comments

  1. Richwinter21 December 2024 at 06:18

    I hope you highlighting the ups and downs of being a carer helps improve the support available. A very moving article.

    ReplyDelete

Post a Comment

Popular posts from this blog

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...
Post a Comment
Read more

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...
Post a Comment
Read more

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...
Post a Comment
Read more