Nau Mai – Haere Mai
Welcome back!
July 2024
I am sincerely thankful for the amazing support and positive feedback on my blog. Your interest and encouragement have motivated me to keep sharing my journey. I want to clarify that I do not accept payment for endorsing products or running advertisements on my platforms. My sole purpose is to share what has proven beneficial for my mother and me, hoping that it will also benefit you.
Mistakes are the Stepping Stones of Wisdom
Oprah Winfrey
During one of my first carer meetings, I came across the “10 Commandments for Caregivers.” These guidelines for effective caregiving particularly intrigued me. As I was in the early stages of understanding dementia, I took a keen interest in what it had to say. Upon reflection, I realised that most of what it said was the opposite of what I was doing. I want to share this experience with you and explain how it is so easy to do the wrong thing. I didn’t know any better then, but now I understand the impact of my actions. It’s no wonder I was constantly stressed out, and I think back to how my mother must have also felt. Nevertheless, this experience has led to significant personal growth and a better understanding of caregiving.
The Caregiver’s 10 Commandments
ALWAYS
AGREE – Never Argue
Sometimes, my mother used to talk about or share stories that I knew were not entirely accurate, and I felt the need to correct her. I thought I was doing the right thing by pointing out the inaccuracies, which often led to further arguments and tension. Reflecting on those moments, I wondered why I needed to correct her, as it only caused more stress. Eventually, I realised that understanding her perspective and letting her enjoy her storytelling in her way was more important. Now, I embrace her stories as she tells them, and I find that it brings us closer together, creating a warm connection and a sense of joy between us that I hope you can also experience with your loved one.
REDIRECT – Never Reason
People with dementia do not always respond well to reasoning. Redirection can shift their distressed attention away from the situation. For example, when my mother asks about her parents, I tell her they have gone to heaven. This response makes her smile, but she often forgets and asks again. I used to get frustrated, but now I understand that to her, each time she asks, it feels like the first time. This realisation has taught me the value of patience. So, I changed the activity and offered her something she enjoys, like a crossword puzzle or her favourite drink, hot chocolate. This shift in focus helps manage her distress and gives me hope and a sense of empowerment in managing her stress.
DISTRACT – Never Shame
Since my mother was diagnosed with dementia, I noticed that she occasionally made comments that may come across as disrespectful, which is unusual for her. Initially, I used to get upset with her, but I came to realise that it’s dementia causing her to say these things, not her true self. As her carer, I’ve learned to apologise and explain the situation to anyone she may have offended. Understanding the impact of the disease has helped me handle these challenging situations more effectively.
REASSURE- Never Lecture
When attending special events, such as family functions, can be overwhelming for a person with dementia. My first experience with this was assuming my mother would be fine since she was with family. I would tell her, “You know who that is; it’s your grandson,” and then get annoyed when she didn’t recognise anyone, leading her to want to leave. I now understand how vital reassurance is. I let her know I am right here, and if she is unsure who anyone is, I can help her. I also learned that creating a quiet space for her to rest and providing familiar items can make the environment more comfortable.
REMINISCE – Never Say Remember
Initially, I was focused on my needs, wanting my mother to remember. However, I’ve come to understand that her needs are more important. This shift in perspective has led me to realise the significance of providing emotional support in our interactions. I’ve learned that reminiscing is a powerful tool that strengthens memory, restores a sense of identity, and promotes mental and emotional stability while reducing confusion, frustration, and depression. This understanding has made me realise that it’s more important to support her than to ask her to remember.
REPEAT – Never Say I Already Told You
It had become a regular occurrence for me to find myself repeatedly saying, “I already told you,” in response to my mother’s forgetfulness, especially during the early stages of dementia. However, I realised this approach was ineffective in helping her remember the information. Instead of being a gentle reminder, it became a stark reminder of her condition, adding to the distress that both of us were already experiencing. I knew I had to change. I decided to repeat the message as if it was the first time and ensure she heard it all, and I learned that patience was vital in this process. It is gratifying, and I hope you can also experience the sense of accomplishment and satisfaction that comes with practicing patience in these situations.
SAY “DO WHAT YOU CAN” – Never Say “You Can’t”
As I mentioned in my blog, being part of the whanau (family) unit gives your loved one a sense of belonging. Taking part in daily activities such as washing the dishes, folding washing, helping with cooking, and doing daily chores positively impacts their mental health, well-being, and personhood. There are days when I do too much for my mother as I feel she needs the support, only to be told to leave it. I can do it myself; I am not a child. This sets me back a bit, but I also think she’s back, even for a moment. It’s a reminder of the importance of patience in caregiving, a reassurance that every step, no matter how small, is a step forward.
ASK – Never Command
When we set out for an activity or an appointment in the earlier stage of the dementia, I would take control. This was mainly because I did not think she would comply or we might arrive late. I realised by trial and error that arguing or trying to explain was quite tiring and, when I think about it now, it was very time-consuming and probably why we were late. However, when I started asking or explaining in easy-to-understand languages, such as Mum, we have an appointment today; the doctor wants to see you to ensure everything is working correctly. She would laugh and answer, there is nothing wrong with me. Yes, you are right, but he enjoys your visit. Let’s go and make his day. This approach has made our interactions more joyful and engaging and has strengthened our connection, and we always arrive early.
ENCOURAGE and PRAISE – Never Condescend
It can be very disheartening to exclude someone from a conversation, especially when the conversation is about their well-being. I learned this the hard way when I ignored my mother while discussing her health with the family. I made her feel invisible, and I didn’t realise how hurtful it was until later. Always try to include your loved ones in conversations and consciously acknowledge their presence, even if it’s just by holding their hand or sitting close to them.
REINFORCE – Never Force
My mother is a strong-willed and fiercely independent woman, and sometimes I find myself consistently when I ask her to do something, quite distressed. However, I’ve learned that it’s all about the approach. As a caregiver, you’ll know your loved one’s quirks and behaviours, so do what you know will work for them. In our case, we use humour to communicate with my mother because that’s who she is. We laugh at ourselves, and sometimes I’ll hear her say, ‘Gee, I think I’m losing it,’ to which I’d reply, ‘Me too.’ No one likes to be told what to do or that they’re doing something wrong. A better approach is to acknowledge what they’re doing well and why.
REMINDER!
It is critical to remember that we can’t change the person we care for who has dementia because they have a neurological disease that has shaped their personality. Attempts to control or change their behaviour will likely be ineffective and met with resistance. Instead, we can positively influence our loved one’s attitudes by changing our behaviour or the environment.
As the Ten Commandments above demonstrate, patience is one of the most essential skills a carer needs. Sharing personal experiences and learning from others can provide invaluable insights and encouragement, inspiring you as a carer to continue your journey with renewed motivation.
What works today may not work tomorrow due to multiple factors influencing behaviours. The key is to be creative and flexible in your strategies; remember, you are not alone.
My next Blog will focus on Creative and Flexible strategies!
He iti hau marangai e tū te pāhokahoka
Just like a rainbow after the storm, success follows failure.
Promoting and Celebrating National NAIDOC Week
E mihi tēnei nāku ki nga Tangata Moemoea ngā Kaitiaki o te whenua ātaahua nei, te whenua whero, te whenua tawhito. Nei rā te mihi ki a koutou!
Let’s take a moment to reflect on the significance of National NAIDOC Week, a time to honor the first Day of Mourning and to celebrate the incredible history, culture, and accomplishments of First Nations people. I’m providing the NAIDOC TOOLKIT to help you inspire your team, workplace, school, club, or community group to celebrate National NAIDOC Week. This toolkit is not just for a week but for the entire year, fostering genuine partnerships, acknowledging Blak excellence, and amplifying Aboriginal and Torres Strait Islander voices.
We are all visitors to this time, this place. We are just passing through. Our purpose here is to observe, to learn, to grow, to love ….. and then we return home.
First Nations People
