Grieving the loss of a grandparent with dementia and 'the storm' that follows

The loss of a much-loved family member can be a very emotional experience. In his latest piece 'Storms', 14-year-old A'yaan shares the story of his grandma's death, who had Alzheimer's disease.

STORMS

By A’yaan Abdul-Mughis, aged fourteen

I had promised my grandma that I would hold her hand a little tighter the next time I saw her after lockdown restrictions eased.

And here I was holding her hand – fragile and cold. It was the middle of the night and she was asleep. Her breathing was becoming more erratic and we had gathered around her bed. Then, without a fuss, she took her last breath and simply slipped away. It was all over.

That’s when it really began to get messy.

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You see, you spend years in the eye of the Alzheimer’s storm. Reading up on the latest research, googling the different stages of dementia, searching for tiny signs of improvement, glimmers of the person you used to know.

You’ve cycled through years of hating it, wanting to scream out at the unfairness of it, guiltily wishing for some respite from it, helplessly watching your loved one lose pieces of themselves.

You think you’ve cried your tears so that when the time comes, it won’t be so bad. You think when it’s all over, the storm will pass.

But no one tells you about the storm that will follow. Storm Grief.   

Showing no mercy, it bruises and batters you in ways you didn’t think possible. It penetrates your every thought and action and weighs you down until you fall to your knees. And you thought you were strong. You thought your loved one’s Alzheimer’s journey had toughened you.

You thought you were mentally prepared to face the death of your loved one. 

So the ferocity with which grief hit took me by surprise. The intense waves of memories and sadness and anger and physical pain kept encroaching for weeks with no particular pattern.

And just when you think you might have regained your balance, it knocks you down again. And again. And again. 

A lonely purple crocus flower in full bloom, growing from darkened rubble

When there is a lull in the storm – and there always is, however brief – you are faced with an echoing emptiness.

Then, miraculously, just as a flower blossoms in the rubble, so those empty spaces start to fill up with beautiful and positive memories of the vibrant souls that our loved ones were.

That all-encompassing Alzheimer’s cloak that once threatened to define grandma is put in its place – as just one motif in the rich tapestry that was her life; a life that we now, six months after her death, can begin to celebrate and draw inspiration from in a way we weren’t able to when she was alive.

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Discussions about Grief and Loss in our online community, Talking Point...
Discussions about Grief and Loss...

And then one day you get up and stay up a bit longer after you are knocked down. You feel a bit steadier within.

Because gratitude and love are no match for whatever grief has in its arsenal (most of the time, anyway).

It’s not easy but with time and patience, you realise that you never really lose a soulful connection even through the challenges of dementia and death. You just learn to water it in different ways and it can be as strong as you choose it to be.

In hindsight, I am enormously grateful for all of it. For seeing what dementia can do to a person and to their family. But also for seeing what it can’t do, despite its best efforts, in the face of human resilience.

For the wonderful stories of the amazing people I read about here - those who suffer personally with great dignity; those who care with a super human level of sacrifice and compassion; and all those who work to making the world more informed, better supported and ultimately free of this devastating disease.

Feelings after a person has died

When a person with dementia dies, this may feel like the final loss of many. Read more about grief, loss and bereavement on our website, or download the full factsheet as a PDF.

Read more online Download the factsheet
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My mother was diagnosed with dementia over a year and a half ago. She will be 91 in October and I feel so blessed to stil have her. We've noticed a change in her, like misplacing large amounts of money, forgetting her children's birthdays, forgetting the day of the week, and so on. I call myself trying to become more knowledgeable as to what I can expect to witness. My husband has been a great support system for me. We moved her into our home. I have a sister whom I was sharing the responsibility with. The arrangement was every three months we would rotate who mom lived with. During my watch, she ended up in the hospital with COVID. Thank God she pulled through. Once my three months were up she went back to my sister's home. She was there for two weeks when she called for me to come get her because she didn't want to stay there anymore. My sister's response was "I can't do it, but once I return from vacation I will come get her and give you a break". Her vacation ended over a week ago. I have not heard from her. I ended up taking FMLA from my job to care for my mother. I just don't know how long I will be able to do it. All of my immediate family members have so much to say as to where my mother should be, but no one is stepping up or stepping in to help me other than my husband. Any words of encouragement are appreciated 😥😥😥

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Hi Yvette,

We're really sorry to hear about your mother's situation. We're relieved to know your husband has been a great source of support.

It sounds like you might also benefit from joining our online community, Talking Point, where carers and other people affected by dementia share their experiences and offer support. This could be a great place for you to speak to and get advice from others who have been in similar situations: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

If you're based in the UK, you can contact our Dementia Connect support line on 0333 150 3456. When you call, our advisers can offer you detailed information, advice, and emotional support specific to your mother's situation. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps, Yvette.

Alzheimer's Society blog team

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Dear Yvette. I lost my darling hu baby of 41 years marriage just over 2 years ago... the pain is easing thank God!
I am now able to be grateful that he wasn't here during Covid to add extra stress, bewilderment & hurt!
With regard to your problems I have found in my volunteering roles now as a Dimentia Friend at local rugby club that no matter the size of the family, it seems the role of carer usually falls to just one person (& their family) If you are an only child you expect this but not if you have siblings! But unfortunately, for whatever reason, this is very often the case.
This can lead to stress, resentment, frustration and anger on the Carer
Please try to get help elsewhere from organisations, hospices or local authority these can often come up with offers of help, respite, breaks that you may not know about. Luckily my local hospice & hospital were supportive and helpful when we were going through our Dimentia journey. Strength is needed in more ways than you know about! Good luck with your journey and may you have a calm reaching of the destination. X love from Margaret in Worcester u.k.

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