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A carer's grief

A carer's relationship with grief can be long, deep and complex. And sometimes, this sense of loss and sadness is not around death. It's an emotional and emotive subject, but an incredibly important one.

A carer sitting alone in her thoughts.

Here we talk candidly about the type of grief we may experience as a carer, and how we're helping ourselves and each other to manage our own paths through.

What is grief?

An article by Stuff states:

“Grief is our body’s way of dealing with a significant loss that has affected us in our day to day lives”

With this in mind, consider how big a part caring may be in our day to day life. How emotionally invested we are every single day. In some cases, our mind is working in overdrive. Perhaps it’s reasonable to expect us to feel the presence of grief more resolutely.

As Queen Elizabeth II so eloquently once said;

"Grief is the price we pay for Love"

Or a Stuff's article goes on to say:

"The depth of our grief is directly proportional to the amount of love or security we have lost."
"The greater the investment of love, the greater the impact of grief."

When looking after someone, these quotes may resonate deeply. Particularly for those of us who have been fortunate enough to have a positive relationship with the person we care for.

Even where the relationship has or is not easy, the sheer impact of their presence, as it changes, will deliver its own version of grief and other emotions. We may also be grieving the loss of our own identity - the person we once were before we started caring.

A carer's grief journey

We experience waves of grief throughout our caring journeys – not just at the end of someone’s life.

It may be fair to say that the grief journey for a carer, maybe longer, more complex and felt more deeply.

We talk about the types and times we experience grief as a carer further below. From grief over the loss of a future we feel has been stolen, to anticipatory grief as the person we care for changes, and may ultimately enter palliative care. And all the many types of grief in between.

Recognising grief

In some circumstances, it can take a long time to recognise grief, and then accept it. This can be especially true, when the person we care for is still with us. Our grief is complex, not linear. It isn’t life, death, then grief. It’s far more complex when we’re in a caring role.

“Our daughter had a regression when she was three years old. She lost all her key skills, including her recognition of us as her parents. For many years I felt so very heavy and with a deep sadness. I had never recognised the feeling as grief – at the loss of the little girl she used to be and the relationship we used to have. I’d never considered grief, as my daughter was still with us. Recognising and acknowledging the feeling was the most impactful thing I did, and the start of my healing.”

Seven types of grief we may experience

Grief comes in waves – at each milestone missed, at the loss of the person they once were, or of the future we thought we had together (and independently).

Ultimately, as the person we care for passes away or into the care of someone else, there are many types of 'losses' we may experience along the way.

1. The loss of a future we’ll never have

As a parent of a child born with a disability we may grieve the child (and future) they never had. We may grieve each milestone our child misses (starting school, making friends, learning to talk, getting a boyfriend/girlfriend, going to university, starting a job). Each transition in their life may trigger a fresh wave of grief for us.

The same can be true in other caring relationships too. The retirement plans we had with our partner. Or the loss of our own independence and plans for the future, as our caring role takes over.

2. Grief as relationships change

As a son or daughter caring for a parent with dementia, or a husband caring for a wife with a degenerative disease. We may grieve the loss of the relationship we had.

Where once our parent cared for us, we have now seemingly stepped into the role of parent to our parent. Where we once went out on dates and had fun, we're now providing personal care.

We’re grieving a lost relationship, but our Mum, Dad, husband or wife is still here. We’re also managing anticipatory grief, as their health or mind decline, and the clock is ticking.

Their personality may have changed, and in some cases our relationship with them may even be becoming difficult and unhealthy. Each of our paths is unique.

3. Anticipatory grief

Rosie’s story is such a powerful example of living with anticipatory grief. Where the person we care for only has a limited time left. Rosie sensitively shares her experience, and offers some words of advice:

  • None of what we tell ourselves really matters. What matters is the time we have left. Make the most of it. Allow everything else to fall away.

  • Ask a loved one or close friend to notify friends. If it’s possible to keep the circle of those closest to us up to date in one go. The energy we’ll save having to go over the same things repeatedly will be invaluable. My husband set up a group chat separate from me to keep our close friends up-to-date. It meant they were aware of what was happening without me having to say anything.

  • Talk to the one who is dying about it. Talking about death will not hasten it, and the relief of sharing some of those emotions will bring comfort later on.

  • Allow ourselves the space to remember that what we’re living through is fundamentally imperfect and unfixable. Give ourselves permission to know that we are doing the absolute best we can in an impossible situation.

  • Allow ourselves to find the pieces of humour wherever we can - it’s the moments of levity that will stay with us.

4. The loss of our identity

When we're looking after someone, so much of our time can be taken up with thinking about the other person. Slowly, we start operating on their schedule, carrying out errands for them, and planning how their day should go to make things smoother.

The things we once did for ourselves start to fade and we forget about the things that we did for ourselves.

It may be that throughout our caring journey, we've been faced with many obstacles, and 'no's'. We may start to question whether we're good enough. The loss of our identity isn't a good feeling - it may lead to increased anxiety, low self-esteem, depression and loneliness.

If we're experiencing any of these emotions, it's important to reach out for support. A trusted friend, GP or local carers support are a good sources of support. Talking therapy and journaling can also help us with our thoughts.

Join our carers' hub or one of our daily online cuppas, where we can connect with other carers in a safe space.

5. The loss of the job we loved

Some of us may have had to make the difficult decision of leaving our job, to care. Giving up work is not easy. We may be impacted financially, and if work is something we enjoy, we may feel we're also giving up our own aspirations, and part of our identity.

If we're struggling to balance work or would like to go back, we have a guide of working and caring - full of carers' tips and legal rights to get you thinking...

We may experience feelings of guilt and resentment for the way things have turned out. Sometimes, we can't pinpoint exactly what we resent, we just know that it feels unfair. Our guide to managing feelings of resentment and guilt is a helpful starting point to help us recognise these emotions, and where we can go for help.

6. The loss of our passions, hopes, and dreams

The loss of our passions, hopes and dreams is another type of grief.

We may struggle to find the time and opportunity to take part in our hobbies. Or it may be that we've lost our energy or enthusiasm for a much loved activity.

We may also mourn the loss of future adventures we may now not get to have.

7. Mixed emotions

With all the emotions of sadness, relief, guilt, anger, bitterness, or resentment, hopefully there are some joyful memories to look back on, if we're lucky enough to have had a good relationship with the person we care for.

How we process all of these and carry on one step at a time, is a very personal journey.

For many of us, our lives are so entwined with the person we care for, that feelings related to grief are felt strongly, and often on a loop.

Overall, these emotions can feel very strong. Acknowledging these emotions as a type of carer's grief, can give us the opportunity to process them and begin to heal.

So how do we keep going?

Some incredibly brave carers in the Mobilise community, have been sharing how they are supporting themselves in the toughest moments of grief.

“After years of decline, my Dad is now dying. Nothing takes away the pain, but there are little things I do to feel better for a moment”

Five ways in which carers are supporting themselves through grief:

1. Sketching pictures that reflect my thoughts and feelings

2. Reading and watching uplifting books and TV programmes for an escape

3. Reading poetry that shares our human experiences

4. Making time for me

5. Acknowledging and accepting the grief

"One of the most painful but helpful things I’ve ever done, was to experience a guided visualisation where I accepted, and really felt my grief. It was overwhelming, emotional and exhausting. I let it all in, like crashing waves. Afterwards, I felt very fragile, but oh so light. I’d carried that grief with me for years – it was like a heavy weight, which had now been lifted somewhat. I’d been too scared to really feel it, but now I know I had no chance of really moving onwards and healing until I’d dealt with those feelings – however uncomfortable."

"We shake with joy, we shake with grief. What a time they have, these two housed as they are in the same body" - Mary Oliver

It can be really helpful to us all, to understand how we can experience complex emotions in a healthy way.

Chronic sorrow

As carers, we're more likely to experience something known as 'chronic sorrow' when dealing with feelings of loss or grief.

Chronic sorrow is a deep feeling of sadness or emotional turmoil over a long period of time - at which we may start to feel as though it is permanent. It may be helpful to remind ourselves, that we're not alone with this.

More specifically, chronic sorrow tends to stem from the emotional care we provide for our loved ones, as opposed to physical care. For example, if the person we care for has had a diagnosis which leads to a noticeable change in behaviour, our attempt to reduce this change can be the start of us experiencing chronic sorrow.

What are the signs of chronic sorrow?

  • We feel like we need to be strong at all times, for the person we care for.

  • We're finding it difficult to sleep, either because the person we care for can't sleep, or our minds are constantly racing even though we're physically tired.

  • We feel like the future to experience things with our loved ones has been robbed.

  • We're either fixated on specific memories or 'what ifs', or completely block them out.

  • We feel there is a lack of support from our friends, family or health professionals.

  • We feel like 'prisoners in our own homes'.

When we're experiencing chronic sorrow, it can be extremely difficult for us to reach out to others. Whether it be because our loved ones are not ready to tell others about their diagnosis, or we simply don't know how to.

However, research in 2015 carried about by Christine K Mercer has shown that carers who were able to share their experiences with others, helped them come to terms and make sense of their own situations.

Illustration of two friends sitting together, chatting.

Helpful tools to support our wellbeing

As carers, we can struggle to prioritise time for our own wellbeing. This can be exacerbated when we’re managing palliative care (end-of-life care) and (anticipatory) grief. Where we feel the time is short and/or the medical needs we are managing feel all-consuming.

But neglecting our own wellbeing can make a difficult or unbearable time harder, not easier. Our blog, “How to care for yourself when there is no time to care for yourself” has some really simple techniques that take minimal brain power and minimal time – but which will support our own wellbeing. We call them "micro-respite" moments.

We've also created some resources, with the input of other carers which you can dip into at our own timing:

Maybe a helpful way to approach this is to think of the benefit for the person we care for. If our mood is lifted, they will feel that energy. If you’ve read Rosie’s blog, there is a time for floodgates and talking through your emotions, and a time for laughing too.

“Allow yourself to find the pieces of humour wherever you can - it’s the moments of levity that will stay with you.”

If you're affected by grief, organisations like the Good Grief Trust and Untangle have lots of support and advice. And Mind have a helpful directory to bereavement charities and organisations.

We'll also leave you with a short, relaxing, guided visualisation, which may support you to drift off to a much-deserved sleep. Sleep is where we replenish and repair. Sometimes even a five-minute power nap can be incredibly revitalising.


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