As we come to the end of a year that I’m sure no one expected to turn out the way it has, most of us are probably feeling that our coping skills have been sorely tested. The exponential rise of both COVID-19 and the mental health problems lockdowns have caused have left countless numbers of people struggling, and none more so than families who are supporting loved ones with dementia.
I often talk about acting before a crisis point occurs, but of course COVID-19 was perhaps the most unexpected of all crisis points, and despite advancements in treatments and vaccines it remains a severe and ongoing pandemic affecting all of our lives.
The themes of trying to cope and experiencing a crisis are ones that sadly pretty much every person I’ve ever met who is living with dementia or supporting a person with dementia know only too well. Most families try to cope for as long as possible, for many different reasons but predominantly out of love, and most of us fail to plan adequately in advance for the deterioration in ours or our loved one’s health which means a crisis generally always occurs, usually when the person ends up in hospital.
COVID-19 has of course exacerbated all of these issues, making it harder to cope and plunging many people into crisis, and so I wanted to finish my 2020 year of blogging by addressing both of these themes to help those of you who are supporting a person with dementia to (hopefully) feel better able to cope and to avoid a crisis in 2021.
Make a plan
The nature of dementia means that things won’t stay the same forever. So even if you feel like you’re coping and the person you are supporting is eating and drinking ok, mobile, communicative, continent and socially active (even if only via more remote means at the moment), this sadly won’t remain the case forever. With dementia being a progressive and terminal condition it means things will change either gradually or suddenly in the future.
Discussing and looking at care options and ascertaining the person’s wishes are key in planning for the future. This isn’t a conversation solely about decline and death – it should be a positive part of planning for the best life possible in 2021 and beyond. Need some prompts? The My Future Care Handbook is a good resource to help you begin your planning.
Start the assessment process
Even pre-COVID getting assessments completed wasn’t a quick process for many people. In these unprecedented times, it’s often considerably harder. So, if you haven’t had a Carer’s Assessment from your local authority, or you aren’t sure what assets will be taken into account in a financial assessment, find out. Forewarned is forearmed! And if you think you may qualify for NHS Continuing Healthcare funding (my dad had this) then ask, and be persistent in getting answers (persistence is very important here).
Be honest – Do you need care and support now?
Often people wait to engage care services until they are in a crisis situation. This is generally the worst time to make decisions since you are likely to be stressed, under pressure, exhausted and unable to take in everything that’s being said to you or asked of you.
Engaging with care and support services earlier can help to prevent making rushed and often poor decisions. There is a wider breadth of services now compared to when my dad was alive – everything from companionship and wellbeing services that can support a person early in their development of dementia, through to hourly, 24-hours live-in or residential/nursing care for when a far greater level of care and support is required.
Ask for help
Perhaps the most vital point of all that underpins everything I’ve said is that planning, getting assessments and accessing care and support services isn’t an admission of weakness. It doesn’t mean you have let the person down. It doesn’t mean you are less of a person yourself. And it has absolutely nothing whatsoever to do with admitting defeat.
We are all human, with different skills and coping mechanisms. Just because your neighbour can look after her mother from the development of dementia through to the end of her mother’s life without support doesn’t mean you can. Every person’s dementia is different and every family carer’s experience is different. We all have our own struggles, many of which are often hidden, so be kind to yourself.
I would urge anyone needing support to make asking for help your New Year’s resolution, so pick up the phone and make a start. Whether that’s beginning an assessment process, contacting a care and support provider, or having a conversation about future wishes with a loved one. Don’t put off until tomorrow what you can do today.
If you need additional help to navigate supporting a loved one with dementia, remember that the Admiral Nurse Dementia Helpline is a fantastic resource for emotional support as well as advice on a wide-range of dementia related symptoms. You may also want to access Dementia Carers Count to equip yourself with greater knowledge and coping skills, or TIDE.
Thank you for all your support in 2020. Until 2021…