Dementia and Well-being: A Backward Kind of Journey

In my picture book, "I Love My Grandpa," the center page showcases a little boy climbing up a ladder while his grandpa descends. The intention is to depict how older people with dementia return to their childhood state. I wrote it while caring for my dad. Lately, I've come to observe my mum, who has Alzheimer’s, also taking steps back into childhood. It feels a bit like a tape on rewind. Right now, my mum seems to become very anxious if I’m not in her sight. It reminds me of when my youngest daughter, Betsy, just couldn’t bear to have her dad out of sight, even for a few minutes.

It got me thinking about whether an older person’s return to childhood closely adheres to their experiences as a child or whether it is more general. I even did a bit of reading up on attachment styles. As a child, my mum had prolonged hospital stays, her dad was away at war, so it's easy to deduce she might have had an insecure attachment. Perhaps that's the reason behind her yearning for her needing me close by. I would like to say that understanding means I never mind, but I do sometimes feel frustrated at this constant need to be near me. Take today, for instance: My eldest daughter, Annie, rang for a chat, and, surprise, surprise, mum suddenly felt the urgent need to visit the bathroom. As I had suspected, it was a false alarm and perhaps the result of feeling that she wasn’t getting my attention. I’ll be honest; it is tiring. Particularly today, as she’d had an upsetting episode of vomiting, which meant more washing, more cleaning, and, to continue the toddler analogy, more challenging than a little one.

Please don’t think I’m heartless. I'm well aware none of this is her fault. But buried deep inside me, sometimes, bubbles up a feeling of resentment and a sense of being trapped. I know I’m not alone, and it is a feeling many carers feel from time to time. We all have our strategies for coping. Some of us swear by journaling, others by taking brisk walks (if they can), sweating it out with some form of exercise, confiding in someone, or even blogging. The latter is a bit of a tightrope for me. I never want to paint my lovely mum in a less-than-flattering light, yet I also want to maintain the authenticity of my experiences navigating this part of my life.

So, how do you juggle care, love, and that tiny, sometimes annoying voice of resentment? How to navigate the tricky waters of resentment when it wells up inside and how to balance caregiving with self-care? I really don’t know, but that’s where my young friend Sam comes in. Here’s his take on things.

Sam can add a bit more. I can’t honestly relate yet, but I do appreciate the sense of being trapped. For example…

So overall, these are my suggestions for managing stress and resentment whatever the situation. After all, while it is easier said than done, it is only by practicing self-care that you can be strong enough to care for others.

1. Self-Validation: Recognize that your feelings of resentment are valid. You're handling a challenging situation, and it's natural to feel overwhelmed. Accepting this is the first step to address it.
2. Mini Breaks: Take small, frequent breaks throughout the day. Even a five-minute pause where you breathe deeply, listen to a favorite song, or sip a warm drink can help.
3. Journaling: Keep a diary handy. Write down your feelings, no matter how raw they are. As you know, writing can be therapeutic and offers a safe space to vent without judgment.
4. Stay Connected: If going out isn't an option, try virtual means. Regular phone calls, video chats, or even joining online support groups can keep that feeling of being connected.
5. Mindfulness & Meditation: Practicing mindfulness, even for just a few minutes each day, can help ground you. Apps like "Calm" or "Headspace" offer short guided sessions tailored for stress and resentment.
6. Educate Yourself: The more you understand the situation you’re handling, the better equipped you'll be to handle situations without personalizing them. There are many resources and books available on the topic. I know you've read several books on dementia. Check out your posts on Sally Magnusson’s "Where Memories Go" and Wendy’s Mitchell’s “Someone I Used to Know”.
7. Seek Professional Help: Consider therapy or counseling, even if it's online. Speaking to a professional can provide valuable coping mechanisms.
8. Physical Outlet: Since going out might not be feasible, find indoor exercises that help in releasing pent-up energy. This could be simple stretching, yoga, or even dancing to a few songs.
9. Reminders: I hope this doesn’t sound pie in the sky, but consider creating a 'positivity wall' or a 'memory lane' with photos, quotes, and reminders of the good times. When resentment builds up, take a moment to look at this space, reminding yourself of the good times.

How's that, Sal? I'm hopeful that these tips will help you navigate the situation that you were brave enough to share with us.