Think about the basics of life for a moment, like waking up in the morning in your own bed and knowing that it’s your own bed. Getting home from a day out and knowing that you are, in fact, at home and can enjoy that feeling of being comfortable and safe. Or seeing your partner, siblings, children or grandchildren and knowing exactly who they are and how you are related to them.
Recognition of places or people that form part of our everyday lives gives us grounding, a sense of belonging, of knowing who we are, how we fit into our family and where we can feel secure and be ourselves. Living with dementia has a tendency to change those key markers for many people, leaving them disorientated in previously familiar surroundings or struggling to recognise faces that have been part of their life for years.
Amongst the many symptoms of dementia, these are some of the most difficult for someone who is living with dementia and their family to come to terms with. The pain of seeing a loved one so lost and bewildered or struggling to work out who is in front of them is heart-breaking. For the person with dementia, however, it is likely to be even worse.
In the earlier stages of dementia, when a person often still has a high level of awareness, that desire to show those around them what they can do and prove that they are still their own person is huge. Anyone feeling like they’ve lost control of their life is always going to want to claw back that control, and not being able to feel comfortable in a place that you are told is home, or indeed amongst people who are apparently your nearest and dearest, would elicit feelings of confusion, sadness, frustration, anger and utter misery on the best of us.
Not being able to recognise a place that has been your home for years, to the point where you can’t even find your way to the bathroom when you need the toilet, is likely to feel degrading and humiliating. Worst still, if the place you are being told is home doesn’t feel like home, all those comforts that we associate with being in our own space are lost, and you potentially then feel permanently on edge, unable to relax or conduct normal activities.
If you are already struggling to remember how to have a shower so that all of you comes out clean, or get dressed in the right order (with co-ordination, appropriateness for the occasion and comfort in mind), make a cup of tea (in a cup, with boiled water and the right amount of milk and/or sugar) or turn the TV on and find your channel of choice, your environment will feel even more alien. A bit like living in a hotel that you found when you were lost, where you’ve no idea how anything works, haven’t packed the right things, don’t want to bother anyone by asking (since you then feel like a nuisance) and can never leave. Suddenly it makes a stay at Fawlty Towers* look quite appealing!
When it comes to knowing who the people around you are, it’s an even more terrifying prospect. From time-to-time we all struggle to put a name to a face, but when it’s the people you grew up with, those you have lived with for years, the children who you bought into the world or the grandchildren you lovingly cradled, life can feel very desolate.
Not being able to recognise family members can have far-reaching consequences too. You might have woken up next to your partner for the past forty years, but if the day comes when you wake up next to them and have absolutely no idea who they are, or where you are, you are likely to feel terrified or angry. Many a call has been made to the police by a person with dementia who cannot recognise their surroundings or the person that they are with, and as such are feeling in danger or believe that they are being held against their will.
Without recognition of who someone is, or reasoning to assess a particular situation or the actions of a family member, accusations of improper conduct or criminal behaviour like abuse or steeling can be incredibly hurtful and mystifying for families. Paranoia is a common symptom of dementia, and something we experienced with my dad when he became convinced his neighbours were stealing from him. For the professionals who are often called in to investigate such claims, it can mean treading a very fine line as you try to discover if someone is paranoid as a result of their dementia, or is in fact trying to report something very real and potentially unlawful.
With all of these complexities of day-to-day life with dementia in mind, my advice to you today is to stop what you are doing for a moment, take in the familiarity of your home, the love of your family and the security that comes from these things, a security that those of us without dementia often take for granted. It is anything but mundane, it’s priceless.
You can follow me on Twitter: @bethyb1886
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