Losing them Twice: The Alzheimer’s Grief Journey

Today is World Alzheimer’s Day, created to raise awareness of the disease as well as to introduce a conversation for those affected. If you’ve lost a loved one to Alzheimer’s, you may also find this to be a day of reflection for you.

The grief journey presented by losing someone to Alzheimer’s can be especially complex, not only because you can end up feeling as though you lose them twice. You may also have had to step into the role of a carer to support them, which could leave you with a sense of lost purpose now. You may also experience a level of relief for their passing – and, typically, feelings of guilt with this!

Grief then Bereavement

Many who have lost a loved one to Alzheimer’s speak of a feeling of losing them twice; once when they stop being the person you knew and often stop knowing you in return, and again when they pass away. Because of this, there can be a delay in the grieving process, and you may find you cope well immediately after their death but feel your grief more heavily later on. This is not unusual and it’s important to remember there is no time limit on grief. Take the time to check in with yourself now and then and make sure you are giving yourself the space and understanding you need to grieve, whenever it is that you need it.

What do I do now?

If you did take on the role of carer for this person, it may have been something that came on suddenly and caused a big life change for you. Now all the changes you made to accommodate this are still in place, however the role of carer is no longer required. This can cause an additional struggle while you reassess what life looks like now and what you do now with this additional time. Try to use this as an opportunity to consider your needs and your own self-care. Whether that’s reserving Wednesday afternoons for a bubble bath, Thursday mornings for DIY projects or Saturday evenings for a catch up with friends, try to fill this space with activities that prioritise your own needs and mental health. If you’re considering going back to work, try to wait until you’re ready.

“I didn’t think that was fatal?”

Part of the struggle in losing someone to Alzheimer’s Disease is a lack of understanding from your peers. There still isn’t a great deal of awareness around the fatal aspects of this condition which means that some may struggle to understand what happened or how to support you through this time. Approach this in your own way, but don’t be afraid to use it as a teachable moment for others. Whether that’s opening up a conversation or drawing a clear line where you’re uncomfortable, you will be making it easier for others to understand what you’ve been through and how they may be able to better support you now. There are still a lot of misconceptions and even stigma around dementia, so contributing to better understanding might end up helping others who are affected later down the line. Some people even find meaning in their loss by volunteering or fundraising for dementia charities, which is an option to consider only when you feel strong enough.

Relief in Grief

Some feel relief after the person living with Alzheimer’s does pass away, which typically stems from the remorse you felt in watching them lose their independence towards the end of their life. This is perfectly normal, however it is important that you don’t deny yourself other feelings around the loss just because you’re conscious of a sense of relief. Relief is but one potential element of your grief journey. Guilt, remorse and anger are but a handful of the typical emotions associated with grief and you are entitled to feel each and every last one. Do not hesitate to seek support on this journey should you ever feel you need it.

How to talk about it?

Like with any form of grief, you must approach this in your way and in your time. The GriefChat free online instant chat with dedicated and qualified Bereavement Counsellors – many of whom are Dementia Friends – is open Monday to Friday 09:00 – 21:00. If you’ve lost a loved one to Alzheimer’s and need to talk about it, we are here to listen.

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