Supporting a loved one who has dementia can take it out of you. The nature of the condition means that your special person is gradually losing their ability to remember, to take care of themselves, and to function fully in the world. Supporting someone with dementia can be incredibly draining on the inner resources you usually rely on to cope with the stresses and demands of daily life.
This is how the World Alzheimer’s Day website defines dementia:
“Dementia is a degenerative brain condition that affects over 50 million people internationally. It robs a person of their memory, competency, comprehension and behavioural awareness, usually slowly, over years. It is a sad condition to live with or to witness in a loved one.”
It is indeed a sad condition to witness, and you may be grappling with all kinds of mixed emotions towards your loved one and towards yourself. World Alzheimer’s Day (21st September) offers an opportunity to reflect on the challenges of supporting someone with dementia – and how to become more resilient to cope with the condition and the stigmas attached to it.
The reality of supporting a loved one with dementia may involve coming to terms with the following…
They will gradually lose their faculties
Babies learn to walk, talk, feed themselves, go to the toilet, tie their shoelaces, get dressed, pack their own bag. Dementia takes the opposite route and eventually robs people of their ability to look after themselves. People with dementia gradually unlearn and lose the ability to do the day-to-day things that we take for granted. Witnessing that depletion and degeneration can be heart breaking.
Your loved one’s behaviour may become erratic and odd
A previously reserved relative may start to become gregarious, uncontained and, at times, inappropriate or embarrassing. A previously outgoing person may become more inwardly focused and withdraw from social and family situations. Either situation can add to your anxiety and fears over how to deal with them when they’re acting up in public.
People may stare and comment
This factor really should be last on your list of worries, but sometimes people’s tuts and sighs and raised eyebrows can get to you. People out there really don’t know what’s going on for you or your loved one, yet they may pass judgement none the less.
You’re losing a future
The stark reality is that you’re spending time with, and looking after, someone who has a degenerative and fatal condition. The rate of the degeneration can vary from person to person, but whatever dreams you had with your loved one will be forever changed.
It will hurt when they don’t remember you
When dementia is first diagnosed, it’s scary for all involved. You know their memory will diminish at some point, but you may not be fully prepared for the moment when they don’t remember you personally – whether you’re a child of theirs, a partner, cousin or friend. Prepare yourself for when that moment will come.
There will be good and bad days
Your loved one with dementia may have extremely lucid days, when they appear ‘normal’ and functioning. On other days, they may appear lost and chaotic. It’s part of your job as carer to anticipate and deal with both.
You may experience anticipatory grief
This means that you may feel a sense of impending loss. Some people describe dementia as grieving twice: once when their loved one starts to lose their mental capacity, and once when the person eventually dies. Studies have shown that grief before the actual loss can be more severe than the eventual loss.
Ways you can become more resilient when supporting someone with dementia…
You need to put on your own oxygen mask first. Reflect on how you generate that oxygen for yourself and how to obtain more of it. Think about exercise, nutrition, sleep, connection with others. You will need to create sustainable activities outside of your relationship with the loved one with dementia.
Don’t feel guilty about having your own life
Your attachment to the person with dementia may create some awkward or difficult feelings within you. Why would you go to the dinner party with close friends when your mum is dying from dementia? Yet if you don’t go to that dinner party you are losing out on a way to replenish your resilience. You may need to reframe your social situations as a way to support you, rather than as a way to take you away from your loved one.
Dementia doesn’t act suddenly or all-consumingly. While your loved one may have moments of no memory, they may also have days of being lucid and present. Make sure you book in some days when you can have shared moments together – and catch them on camera.
Don’t take it personally
It can feel incredibly personal when your loved one is making fun of you, forgetting you, or acting in a way that is intensely embarrassing or shaming to you. Try to remember that it’s the condition taking over and acting out. It’s not them. Try to see the person, not the condition.
Be prepared for awkward jokes
Have a comment ready in response to people who may mean well but who are a bit jarring or awkward in their humour regarding dementia. Someone who jokes that ‘they were going to say something but have now forgotten what they were going to say’ isn’t funny. Take a moment to think how you might respond to such people – well-meaning or otherwise.
Speak to other people
It can feel liberating and supporting to speak to other people going through the same thing as you. Reflect on whether family members, support groups or individual therapy may be right for you to air your feelings and identify with the experiences of people going through a similar situation.
If you feel you need professional support to help stay resilient when coping with a loved one with dementia, then get in touch with us. We have appointments available seven days a week at our centres in Clapham and Tooting. Call 020 8673 4545 to speak to a member of our Front of House team. You can also email us on [email protected].