Margaret and Peggie
I've had a lot of contact lately with Stage 8: Caregiver Recovery, and not just trying to puzzle out my own issues with both Mom and Dad's deaths. Margaret, a Stumped Town Dementia reader, sent me a lovely email updating me on how she is faring after the recent loss of her mum Peggie, the infamous Christmas Cake maker! (I'm sorry I missed out on the chance to wheedle one out of her.)
I connected to her letter so deeply in so many of the thoughts and feelings she shared, and saw our dementia journey with Mom mirrored in her reflections and hopes for the future, that I asked permission to share her words with all of you; for me, even in the Caregiver Recovery faze I am utterly grateful to know I'm not alone. I want you all to know that too.
Hello from England!
Mum slipped off peacefully at the beginning of February and I've been kept busy since then catching up with life and slowly I am letting myself remember Mum before dementia. It's so wonderful that for once, someone out there is making sure our voices as family carers are actually heard loud and clear.
Looking after Mum has been the best and worst experience of my life.
The most strange thing is how the very worst moments broke my heart and then revealed to me just how much she must have loved me (and tolerated me!) as a messy, volatile toddler (with bladder and bowel control as work in progress!) and an uncooperative teenager with an immature mind and an adult vocabulary. Her dementia sapped my strength but it was the example she gave me in her life before dementia, as my Mum, that I drew from to keep going.
Some resolutions crumbled: she did see me crying sometimes and I did lose my patience. I let myself burn out and put on a brave face more times than was sensible and in those rare moments when Mum seemed to find herself just for a while, I was prone to seek her approval and validation for my efforts instead of just enjoying the moment.
At the end, she was peaceful, sleepy and content. We held hands a lot and she remembered little songs, phrases and stories from our childhood. It was a sudden change from a few weeks of hallucinations...
I got used to going along with the recurring nightmare of children trapped in a tunnel of some kind and walking around with a notebook, confirming each child had received first aid and a drink and all the parents had been contacted!
...interspersed with her begging to go 'home' to her auntie's house and asking what right I had to keep her with me because she hated the room and the house and would never forgive me.
What the 'experts' never told me is that whatever dementia Mum had (the diagnosis was Alzheimer's) even to the very end, she did have moments when she questioned what had happened to her and realized she had, in her words, 'lost my marbles'. At those times she would question me about the disease, asking how many other people had it and what happened to them. She would admit to 'losing' days and having no idea of time and I would tell her she had been down her 'black hole'. She even asked, "Oh dear - what did I say this time?" and we would laugh with giddy relief that we'd eked out another precious shared moment of understanding and love from the wreckage.
The really awful bits that would have mortified her, I kept locked away in my head, but the funny and often surreal ones, we laughed about and they nearly all involved the commode.
After one horrendous bout of constipation (the last 4 years have been a battle fought with prunes and disinfectant!) she managed to produce something that landed with a huge thud in the commode bucket, smiled and said, "I'll call this one, Baby Blue Eyes!" What can you say to that?!
The seemingly targeted and impeccably-timed venom directed at me is something you captured so accurately in your writing. It was always strange seeing pictures of Gloria and recognizing something of Mum in that dementia face and posture. It was so incredibly powerful an image when you posted that final photo with the real Gloria in sharp focus in the photo frame and one I kept in my head with the hope that one day, the real Mum would return - in Heaven if not on Earth. Mum and I gave dementia a final punch in the face in the early hours of 2nd February as she slipped peacefully away after a calm and snoozy day before, waking only to chat and giggle a bit like a happy child.
Take that, dementia - you utter bastard! We beat you - she is at peace.
I can't thank you enough for the blog and the documentary. Just knowing there were others like me and Mum out there made all the difference. I'm hoping to set up a holiday cottage in the seaside town Mum and Dad loved, kitted out with all the things that make life in the early stages of dementia more smooth. It's a ways off yet, but one day another Peggie (or a Gloria) will maybe enjoy one last little holiday without confusion, panic or frustration and give her loved ones a few extra happy memories to hold in reserve for the times ahead. It's not quite on the scale of making a documentary, but as far as ethical investments go, it seems like the right thing to do.
I've attached a photo of Mum, mixing her last ever famous Christmas cake. We didn't just soak the fruit in Christmas spirit - we drowned it!
With every good wish for the future and so much thanks,
Margaret
Thank you, Margaret and Peggie
Companion Posts: Three Faces of Grief