I Care

 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...

  Over the years, Chris and I have travelled extensively, often on cruise ships as we had the added security of a floating medical centre. Not wishing to accumulate a growing collection of fridge magnets or coasters, we decided to buy Christmas tree decorations at each venue visited as souvenirs. These were then tucked away on our return home, but brought out each Christmas to remind us of our travels. Nowadays our Christmas tree displays glass angels from Venice... Clogs from Amsterdam... Canoes from Quebec... Russian ornaments from Vladivostok  To name but a few... Travelling is far more difficult than it used to be. We haven't taken a foreign holiday for some years now, and since 2023 we have no longer managed any time away together. So I admit I approached the decorating of this year's tree with some trepidation. I wondered if I might feel overwhelmed with loss as I hung the years of souvenirs on our tree. But I didn't. It was lovely to remember our holidays together, a...

 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 resea...

 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...

 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 t...

 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...