A Carer's Grief

A carer's relationship with grief can be long, deep and complex. It's an emotional and emotive subject, but an incredibly important one.

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.

An article in Stuff stated:

“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. Perhaps it’s reasonable to expect us to feel the presence of grief more resolutely.

As our Queen so eloquently once said;

"Grief is the price we pay for Love"

Or as the Stuff article goes onto 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. "

As carers, these quotes may resonate deeply with many 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 or slips away will deliver its own version of grief and other emotions.

Our grief is balanced against the depth of feeling we have for the person we look after.

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, may be 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 enters palliative care. And all the many types of grief in between.

Recognising grief

In some circumstance it can take a long time to recognise grief, and then to 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-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.”

Types of grief

Grief comes in waves – at each milestone missed, at the loss of the person they once were, of the future we thought we had together, and ultimately as the person we care for passes away.

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.

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 once we went out on dates and had fun, we're now supervising 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.

Anticipatory grief

Rosie’s story is such an eloquent example of living with anticipatory grief. Where the person you 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 does matters. What matters is the time we1 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.

Mixed emotions

But it’s not just sadness we may feel. Caught up in the tumble of emotions there may be relief, guilt, anger, bitterness, or resentment. All hopefully jostling with some joyful memories, 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, on many different occasions. And for many of us with a deep, deep sadness.

So how do we keep going?

Some incredibly brave carers in our community, have been sharing how they are supporting themselves in the toughest and most devastating 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.”

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 and (anticipatory) grief. Where we feel time is short and/or the medical needs we are managing feel all consuming.

But neglecting our own wellbeing needs, 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.

You may also like our three quick tips to help lift our mood.

We may not feel that lifting our mood is appropriate or we may simply not feel up to it.

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, a chat with Suzanne our carer's coach, may be helpful. Suzanne can support us to organise our thoughts and feelings, and sometimes we all just need a friendly, impartial ear to unload too.

I'll 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. I don't know about you, but I handle everything better after a good sleep. Sometimes even a five minute power nap can be incredibly revitalising.