What no one tells you about grieving a parent with dementia is it’s not the obvious things that can take you down.
It’s almost three months since mum died and I thought I’d crumble with Mother’s days and Eid Al Fitr, our first big celebration days but by choosing not to be alone most of the day I survived it.
But then I came home to an empty house. I heard a noise and thought it was mum calling out for me even though I knew it couldn’t be, just my mind playing tricks with me.
No one prepares you for the grief that comes after caregiving ends. Losing a parent is hard enough. But losing the person you cared for every single day? That grief hits you so differently.
Here’s my experience of what no one tells you about grieving a parent with dementia.
Do let me know if anything resonates, or whether you find these grief or caregiving posts still helpful by dropping a hi in the comments!
People Expect the “Big Grief” – But I Was Just… Tired
My grief hasn’t been loud or dramatic most days, it’s just there in the background. Then I remember something that catches me off guard. After the funeral, people expected me to collapse and fall apart. But I didn’t. Not because I didn’t care but because I was exhausted.
No one tells you or talks about how tired you’ll feel.
I hadn’t realised the weight of carrying the stress, the fear, the responsibility over all those years. Being the responsible one for making decisions was especially hard. So now that’s all stopped I just feel empty and tired.
If you’ve lost someone to dementia, and your grief feels strange, then you’re not alone in this. If you’re not crying, if you’re not devastated in the way people expect that’s okay.
The Guilt That Doesn’t Stop
There’s this idea that once someone passes, you learn to make peace with it. But for me, it’s the guilt that is hard to deal with.
Guilt from feeling relieved that you’re not going through this anymore. I’m glad you’re not suffering any more but honestly, it’s also that I don’t have to be the one caring for you on my own anymore. Just thinking that makes me feel even more guilty.
I don’t know how to describe it, but I was getting scared, scared that I wouldn’t do the right thing, like not being able to help if you had a real choking incident.
Or not getting the relief you need because the doctors didn’t see what I saw was wrong.
I’m relieved that I’m not making those medical decisions anymore and so much more. The guilt of that is just eating me up, does that make me a bad daughter?
Then there’s the second guessing that haunts me.
Second Guessing
Did I do everything I could? Should I have called the doctor sooner? Why didn’t I listen to my gut instinct? Should I have been with you in hospital during the day rather than nights and early mornings?
No one tells you how long these questions and many more will keep popping into your head. The last few days I’ve been questioning whether I’d reassured mum enough by talking to her when she was in hospital or was, I too focused on tasks.
I know in my head, she wasn’t awake most of the time, and being on a ward after midnight wasn’t a place to talk to mum without imposing on other patients, but I believe that I should’ve done more. It’s a constant loop in my head at the moment.
No one tells you how intrusive these thoughts are and how they keep you up at night.
The Grief That Begins Too Early
Looking back, I know the grief began years ago despite my now rewriting history in my head.
I know that the first-time mum forgot who I was, I corrected her but when she did it again, I just smiled and answered like nothing was wrong.
But something shifted when I realised she didn’t recognise me.
There’s no funeral for that type of loss. No condolences when your mother calls you by another name. You just carry on. You might rationalise it away or have a wee cry when you’re alone.
But over time, you just become numb to these changes. I adapted to the person you were then while quietly mourning the person you were. I remember being so sad when you could no longer make samosas for Ramadan. Just a small thing, but it was enough to make me cry.
No one really prepares you for this kind of grief. It’s different because you’re dealing with anticipatory grief that starts long before their death.
Did Anticipatory Grief Help?
Grieving parts of someone with dementia before they’ve died is complicated. You have so many ups and downs, a spell of good days, or even hours then something happens, and you suddenly feel a new loss. I know I tried so hard to not show that to Mum.
Every day was a new day, and my role was to help you do whatever you wanted or could do. I had to stop myself so many times from rushing forward and prejudging your capabilities.
I found myself confused on how I should feel. I had to resist the urge to protect you.
I didn’t want to limit you, all I wanted was for you to be happy, even if some moments scared me to death.
I had to learn to let go so that you were living your best life. And now looking back I think that’s what prepared me for when you died.
The Search for Meaning Continues
No one tells you that grief after dementia isn’t just about loss. It’s also about finding meaning for your own life again. I have to keep saying to myself ‘everything happens for a reason,’ otherwise I keep getting angry.
I need to find purpose and use my pain to drive me towards doing something more. I have a skillset that’s different from many others.
I know that I would’ve appreciated hearing from someone with my experience at the beginning of our journey, not just reading pamphlets or books.
For me, that meaning has come in small, unexpected ways. The understanding and compassion I feel for others going through this, in doing everything I can in advocating for better dementia care and in sharing my knowledge of caregiving.
I’m not going to leave it all behind. I’m going to use my superpower of caregiving, because not everyone can do it.
So, ask yourself when you’re looking for meaning after caregiving, what makes you unique or even better ask those around you! They’re the ones who opened my eyes when I kept referring to the fact that I was “only a caregiver”.
Grief is Confusing
Losing mum has changed me, and if you’re going through something similar know that there isn’t a “right way” to grieve just your way. It’s just confusing because you’re being bombarded with so many emotions, and you might have to hold it all together because you’re still caring for others. Or you might have to hold it together to deal with everything that comes after, but how you grieve is your process, there’s no deadline or timeframe for it. There will be hard days and good days, even small moments can rock you to the core.
All I can advise, in case no one tells you, is to try to be gentle with yourself and take care of yourself.
Incredibly beautifully written.
Thank you for capturing the emotions and offering advice. 😢🙏💕
Thank you, that’s kind of you to respond, good to know that it’s helpful for others.
So true. One year on and I am still exhausted. And guilty. And sad. And feeling old, and like my life has no purpose now and probably never will have again. Thank you for writing this.
I’m so sorry for your loss, the exhaustion isn’t something I hear a lot about with grief. The guilt and sadness is so hard to deal with as well, I hope you have someone in your corner to pull you out when things get dark and heavy. I know that I struggle with everything these days. I’m thinking of trying some grief support groups. I wonder if that may help you too? You take care of yourself and thank you for sharing your experience too.
I took comfort in a couple of strange scenarios:
After a particular bad caregiver day, when there was barely any care or giving coming from a very worn down me, I realized that as much as my mom loved her parents, she would not have uprooted her life and moved in with them to walk them through their end of life. That made me understand that yeah, sometimes I suck at this, but I show up, every day, every hour, every minute.
After Mom died I know she got to look back and review what the last few years of her life was like, and I know she was proud as hell of my sister and I for sticking with her through thick and dementia thicker. And there’s was no judging individual days or situations when I was way less than stellar in my care of her. She was just plain proud. That helped me alleviate a lot of guilt knowing that Mom didn’t care, she was just amazed and grateful.
You are right that there is no right way, there’s just your way. And I think you are feeling and doing exactly what you need to right now.
Thank you Kitty, I love that she was proud of you, as were we in your community for showing that there was another way to care, and it wasn’t always perfection and it didn’t matter what’s so ever to our loved one, because we were there for them. Thank you for your words, i’m so sorry that i missed your comment il now.
Thank you for sharing such an emotional and personal journey. I care for my mum so can relate to what you talk about. I hope you can find your purpose, you do have a unique skillset and you deserve to pamper yourself as caring is without a doubt a bit of a rollercoaster ride. I think a support group would be a great idea but please care for yourself , look after yourself and go out and discover the world. With people like you in it, the world is a better place. God bless you.
I’m apologise the late reply, but you words touched my heart. I hope that you’re caregiving journey was a brilliant as mine was, yes, we have the ups and downs, the really difficult days, but we get thought it with people like you who support and champion other caregivers, and who in turn do the same for you I hope. I know my community on social media carried me through many sleepless nights and even in our final days together they were there. I hope you have that too whether online, through family or friends. Thank you again for your kind words.