World Alzheimer’s Month takes place every September. In light of this, we’ve written an article to assist the loved ones of Alzheimer’s and Dementia patients. It isn’t an easy road for the sufferers, in fact, diagnosis is absolutely heart-wrenching. However, we often overlook the caregivers and how it affects their lives. If, regrettably, this situation resonates with you, we genuinely hope that you find our blog post ‘Supporting a Loved One with Alzheimer’s: 8 Essential Tips’ to be a valuable and enlightening resource.
When it comes to caring for and supporting a relative with Alzheimer’s, the word challenging doesn’t do it justice. In fact, not understanding the disease will only add to the heartbreak of watching them being reduced to a shadow of the person they used to be. Often, feelings of anger walk side by side with the heartbreak, and you will find yourself swaying from one emotion to the other. Nevertheless, there are several available strategies that can have a meaningful impact when supporting a loved one suffering from this devastating disease.
To start off this blog post, let me tell you a little bit about my own experience as the relative of someone with Dementia, and how it affected the lives of those around me.
My Own Experience With Dementia
Dementia took hold of my Father’s mind five years before he passed away. When I reflect on the man he used to be prior to his diagnosis, all that comes to mind is his larger-than-life character. A devoted husband and father, overflowing with love and an endless collection of hilarious stories about his youth, without forgetting to mention his ballsy temper.
When Dementia Erases The Brightest Moments Of Your Life
A storyteller at heart, you could often catch my Dad reminiscing about some anecdote from days gone by. Anyone within earshot would be enthralled by his storytelling skills and hilarious anecdotes. One couldn’t help but hang on to every word as he retold his most notorious stories. For example, the time he shaved his boss’s head, claiming to be a qualified barber (totally not true, he had no idea what he was doing). Or when, as a teenager, he sipped the sacramental wine, resulting in his banishment from the local church.
These stories would flow like a river. No matter how many times I’d heard them, they never failed to lift my spirits in the most extraordinary ways. The constant stream of anecdotes brought me a unique kind of happiness. It was the one thing I missed the most once Dementia reared its ugly head. Suddenly those stories became rare gems, few and far between. It felt as though the person he was, his life and his essence were gradually slipping away.
The Challenge Of Acceptance
One of the most significant challenges I faced after his diagnosis was acceptance. Accepting that he was no longer the person he used to be, triggered a wave of anger. Not directed at him but at the world. I found myself full of frustration towards life.
Entering my late thirties, I wanted, or rather needed more years filled with meaningful and funny conversations with my Dad. Because even though the world saw him as this outgoing and witty individual, to me, he was much more. He represented a well of wisdom, and I missed his guidance and comforting presence more than I could have ever imagined.
My Mum, The Caregiver
My Mum automatically became my Father’s caregiver. A role she never asked for, but one that she took on with an impressive amount of resilience and patience.
Everything she did for him, she coated with a thick layer of love and compassion. She embodied the concept of ‘in sickness and in health’. With grace and a smile on her face, was how she carried my Father’s illness, even though I knew deep inside she was breaking.
Supporting a Loved One with Alzheimer’s: 8 Essential Tips
1. Educate Yourself
Taking the time to learn about Alzheimer’s disease, will help you understand the stages, symptoms and challenges associated with the condition. This will essentially give you the tools needed to provide better care and support. Don’t forget, that knowledge is a powerful tool, the best one available to help you manage the situation effectively.
These are some of the best-selling and highest-rated books on the topic:
- Alzheimer’s Through the Stages: A Caregiver’s Guide – by Marie Moller
- Finding the Light in Dementia: A Guide for Families, Friends and Caregivers – Dr Jane M Mullins
- Forget Me Not: A Caregiver’s Guide to Early Onset Alzheimer’s Disease: Tips for Caring for Your Parent While Maintaining Your Peace and Avoiding Burnout – Torri L Fisher
For more online information visit Alzheimer’s Association.
2. Establish And Maintain Consistency
Alzheimer’s patients thrive in familiar routines and environments. By maintaining a consistent daily schedule, you can ease their confusion and anxiety, making life considerably more manageable and enjoyable.
3. Effective Communication
When communicating, it’s essential to maintain patience and clarity. Try to use simple, concise language, and ask questions that can be answered with “yes” or “no.” Maintaining eye contact and a calm demeanour will reassure them, promoting a sense of safety. Be prepared for repetition though. Patience is the imperative word here!
4. Discover Effective Go-To-Methods For Calming Down
When it comes to bringing peace to Alzheimer’s patients, patience and empathy are your trusty companions. Personally, I discovered that an effective strategy to calm my father during his occasional ‘tantrums’ was to switch the conversation to a topic that amused him or piqued his interest. It’s important to note that every patient is unique, so it becomes a bit of a trial-and-error adventure to figure out what works best for your loved one.
5. Help Them Keep Track Of Time
It may sound a bit unusual, but for my Dad, knowing the time was crucial. Even during his hospital stays, my Mom made sure he had a clock with him at all times. Without it, he would quickly become disoriented and, as a result, quite agitated.
6. Help Them Engage In Activities
Encourage your loved one to engage in activities that can boost both their cognitive and physical well-being. Options like puzzles, colouring books, gentle exercises, gardening, or enjoying music can make a significant difference. It’s worth noting that not every patient may initially embrace these ideas. For instance, my Father, true to his wit, often responded with the classic line, ‘I’m not a child’.
Remember to customize activities to match their current interests and abilities, and be patient, as their capabilities may change over time.
7. Practice Patience
When it comes to caring for and supporting someone with Alzheimer’s, practising patience is key, and in all honesty, a superpower. Almost like growing and nurturing a garden, but in this case, you are growing your tolerance levels and mastering the art of patience. You learn to go with the flow and savour the moments, even if they come at their own pace.
Whether it’s answering the same question for the umpteenth time or watching them meticulously arrange and rearrange items on the table, patience becomes your trusty sidekick. My Dad developed an obsession with napkins. He would keep one in his shirt pocket, take it out, fold it up again, and put it back in his pocket once again. Ten minutes later he would perform the same ritual.
8. Seek Support And Respite – You Matter Too
I don’t think we give much thought to the emotional and physical drain brought about by caring for someone with Alzheimer’s. My Mum went through it whilst still dealing with her own mental health issues. In my opinion, it takes a special kind of person with an incredible emotional strength, to take on the role of caregiver.
Don’t hesitate to reach out for help from support groups, Alzheimer’s associations, or professional caregivers. Taking regular breaks, like respite care can be greatly beneficial in order to prevent burnout and maintain your own well-being.
If I learned anything from my experience, it’s that Alzheimer’s disease progresses differently for each person. The key is to adapt your approach as their needs evolve. Amidst the repetition, the confusion and the heartbreak, you find that the magic lies in cherishing the journey and not the destination.
Looking back on my Dad’s journey, I find myself pondering if I was patient and compassionate enough. Did I listen to him and his needs as much as he wanted me to, or did I fail in making him feel acknowledged? In hindsight, all I can hold onto is the knowledge that I did the best I could at the time. And without a doubt, my Dad never ever felt unloved. He was always cared for and always loved wholeheartedly. Even if in the end we were left with a glimmer of the person he used to be, that spark in his eyes endured. Deep down he was always and will always be larger than life and no disease could ever take that away from him.
If you enjoyed this article, please check out Dad, My Hero: A Father’s Day Tribute
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