Dementia: grieving for the living
This article was written by a Kooth mental health writer and contains themes of illness, grief, and loss.
Having a relative diagnosed with dementia can affect the whole family. This article aims to explore the effects of dementia on family members and loved ones and how you can support yourself, too, while in a caring role.
Kooth is full of useful resources, content and support services to help you navigate all sorts of emotions and feelings.
What is dementia?
Dementia is a condition that affects the brain and the way it works. This means it can change the way we think, speak, remember things, and understand the world.
Dementia is a term that covers a whole range of neurological conditions. There are hundreds of conditions that come under the “dementia” umbrella, but some of the most common are:
- Alzheimer’s disease
- Vascular dementia
- Dementia with lewy bodies
- Frontotemporal dementia
- Mixed dementia (or, having more than one type of dementia)
What are the symptoms of dementia?
We are all unique, and dementia can affect people in different ways. Here are just some common early symptoms:
- memory loss (sometimes with this symptom, it may only affect certain memories, such as short term memory)
- problems with concentration
- confusion
- mood changes
- difficulties following a conversation
- trouble thinking of the correct word in a conversation
*These symptoms were cited from this NHS page.
If these symptoms feel familiar for yourself or someone you care about, we recommend making an appointment with your GP.
Who does dementia affect?
Dementia can affect anyone and, while many people might associate it with older people (as it generally affects this age group more), it can affect much younger people, too. Dementia that affects people under the age of 65 is often referred to as “early onset dementia.”
How is it caused?
The brain is a spectacular communication station that sends and receives messages to help the body function. Dementia is caused by damage to or loss of nerve cells which affect their connection to the brain. This affects the way the brain sends and receives messages. When these messages are not sent or received correctly, it means that the body may not be able to function effectively.
How dementia affects family and loved ones We are learning all the time about how dementia affects people. But, for the loved ones around the person directly affected, it can also be a challenge and period of real change.
We know how helpful it is to read about real people and real experiences, so, to help us understand what this situation can be like, we spoke to “Sara”, whose mum has vascular dementia.
*This is Sara’s personal experience – that doesn’t mean that it is everybody’s experience. So, if Sara’s story doesn’t match yours, that’s okay – everybody is different, and how we respond is unique to us.
Sara’s story
When my mum was diagnosed with vascular dementia in her 70s, it was a relief, in a way, to finally have some answers to some of the things we had been noticing for a while – things we felt went beyond the expected consequences of ageing. The forgetfulness, the mood changes, and [the inability] to complete tasks she had once done with ease…had gradually become more apparent.
But after the relief came a real period of what I can only describe as grief. The grief in my case was gradual, quiet, and suddenly overcame me in really unexpected situations. I know sometimes people talk about different phases of grief and I guess for me, I go in and out of those phases all the time because I’m still very much processing my grief so it evolves constantly.
Here are just some examples of how I move in and out of these phases:
Denial – sometimes I don’t accept that my mum is unwell, and I try to carry on as normal.
Anger – sometimes I get frustrated with medical professionals, or even my mum, when they don’t have the answers or don’t understand what I’m trying to communicate.
Bargaining – I sometimes pray that mum will be well again, even though I’m not particularly religious.
Sadness – this is a big one for me, and [it’s] something that catches me by surprise all the time. For example – I remember being out shopping one weekend and realising that I probably couldn’t do this with my mum in the same carefree way again. I also had the out-of-the-blue realisation while watching TV one day that she wouldn’t ever be a hands-on grandmother to any future children in our family. Another time, chatting to a neighbour in the garden one afternoon about plants, I realised my mum would usually be part of these chats. Every time I am caught by these surprise realisations, I am overcome with sadness.
Acceptance – some days, I feel more accepting that she is unwell and won’t recover.
Grief isn’t linear, so I experience different phases all the time. But I guess the idea of grieving for someone who hasn’t died is a complicated concept and one that I feel not everyone is able to understand.
I sometimes feel guilty carrying all these different emotions and so often keep them inside, not knowing where to take them. There are so many wonderful dementia organisations, and there has always been support offered to us as a family – especially in terms of physical help – but, emotionally, I have definitely felt alone at times. That’s not because the support isn’t out there; it’s because of the feelings of shame attached to how I feel. I often feel guilty for feeling the way I do when some people don’t have their parents around at all.
It’s a really complicated feeling to be grieving for the living. It can be tricky, sometimes, dealing with a parent’s condition and also managing your own feelings while trying to get on with general life, too. I am definitely still in the process of my own grief but, like everything, it is also evolving over time. The early days were really quite challenging and overwhelming, but this is what I’ve found useful over the years.
Sharing the load
If you have other family around, it can be useful to think together about a schedule for care, if this feels appropriate. For example, it’s my job to take mum to her weekly medical appointments, it’s my brother’s to take her shopping once a week, and my dad takes care of meal times. This means we are all doing something, but one person is not doing everything – which might feel a little too much. Plus, it helps my mum to have a routine, too!
Having an outlet for your own emotions
For me, it’s definitely music. Whether I need to release my emotions or to feel better after a difficult day, my playlists are so helpful!
Having an emotional support network
My family are sometimes my go-to people, but not always. Sometimes, it’s my friends, neighbours, and colleagues who provide a listening ear or a chat over a cup of tea. Even just a walk in the park with someone who boosts my mood is useful. My support network provides different things at different times. Sometimes I need to be around people who lift my mood, but other times, I just need to be honest about how I feel, however difficult.
For me, it’s so important that I have a safe space to voice my thoughts and feelings with people who are non judgemental and accepting. For example, there have been times that I’ve shared some stuff that feels really hard to say out loud – like getting annoyed with my mum for not remembering something, or for needing so much from me emotionally and physically. These are the things she can’t help, so it makes me feel guilty but talking about it, helps me realise that my feelings aren’t so uncommon either.
If this doesn’t feel possible, why not start a discussion board for help and advice from those who have been through similar experiences? You can do that here.
Practising self-care
Sometimes, when you are caring for others, you can forget about yourself. I have found practising some really simple self-care can make such a difference to how I feel. Taking a shower, remembering to eat and drink, and getting my body moving on a daily basis means I feel much more able to take care of Mum, because I am not neglecting my own needs – which are also so important!
Writing things down
When someone you love has a condition that essentially changes who they are, it can be really difficult to deal with. I often have questions, thoughts, or even feelings that I want to share with medical professionals, if it’s to do with Mum’s dementia – or family members or friends, if it’s something to do with how I feel. Writing things down helps me to organise my thoughts and plan what I want to say. I have a notebook especially for this, which helps, but notes in your phone or wherever feels most helpful might be useful, too.