There is something that touches your soul when you hear the individual stories of how people care for those they love the most. Families often make such huge sacrifices in these circumstances, completely altering the plans and lives they once had to accommodate the needs of someone so dear to them, that they would literally put their life on hold indefinitely, just to give their loved one the best quality of life possible.
Husbands and wives devoted to their other half, truly embracing the very heart of the vow in sickness and in health, children and grand-children giving their mum or dad or grandparent the love and support that they once received from them, siblings caring for a brother or sister, or more extended family members, friends and even neighbours helping to look after someone vulnerable and in need.
Every caring role, no matter what the age or health problems of the person needing care, demands such special skills and devotion, but in dementia particularly, I think the challenge of meeting someone’s needs is even greater. The mere fact that as dementia progresses the person living with it becomes less and less able to contribute to decisions about their care, in itself poses huge difficulties.
Add into that equation unpredictable or distressing behaviour of which there are numerous examples, the fact that your average home can hold previously unrecognised dangers that can put you or the person you are caring for at risk, and that at any given time you could be required to cook, clean, provide personal care, stimulation and activity, protect your loved one’s health and safety and monitor their whereabouts, pretty much simultaneously, and it is no wonder that so many carers struggle.
Meanwhile, as you are doing this, you are also trying to make the most of every moment with your loved one, who is gradually changing from the person you knew. You need time to adjust to this new reality and enjoy the simple pleasures that can still exist, and yet the relentlessness of your role can make that impossible.
All the time the carer and their loved on are on this treadmill there are only two certainties: 1) that dementia is a progressive disease and 2) that it is terminal. However, there are no time frames for each stage of the disease, no map of this journey since everyone is affected differently, and no telling how you will cope, both with your caring and your own personal feelings, further down the line as things inevitably progress.
People are not robots. Carers may often feel that they have turned into some sort of machine, but emotions bubble under the surface. Anger, resentment, guilt, sadness or the sheer claustrophobia that you can feel as a carer can all become overwhelming. Yet people do not give up. Roles may change, as I discussed here, particularly as dementia progresses and the needs of the person living with it become ever more complex, but the love and devotion never end, even when the person you have cared for over many years passes away. I still struggle now with the adjustment of having my life to lead and it not including caring for my dad.
No one inspires me more than people who embrace a caring role, most notably those who do it unpaid and for family members, but also those who devote their working lives to caring for others. I’ve met many wonderful carers from all walks of life, both paid and unpaid, and one thing that has always struck me is how very inspirational they are. If everyone had the same love, commitment and selflessness within them then the world truly would be a better place.
If you are caring for someone right now, don’t ever underestimate the amazing contribution you make to society. Anyone who does not recognise that has never walked in your shoes, but may well do so one day and will then see just what this unique role entails. If I could make what you do any easier I gladly would, and through keeping you at the heart of campaigning for awareness, education and change, I hope that in time I will.
Since I began D4Dementia I have met in person, and through social media, many wonderful carers, and been privileged to share in their stories. Your comments are always very welcome, and I am here to answer any questions that you may have, or just provide a sounding board whether your day is a good one or a bad one.
Until next time…