Becoming a caregiver for a loved one with dementia or Alzheimer’s can be an overwhelming experience. Most of us cannot prepare for the possibility that we might not be remembered by our own loved ones, or that we ourselves would not remember them.
It’s a journey filled with unexpected twists and turns, challenging our perceptions of memory, identity, and relationships. This article explores the complexities of compassionate caregiving, offering insights and support for those new to this role.
If there is just one thing to come away with from this article, it may be that the human experience is not necessarily better or worse with or without control of what we can and cannot recall from moment to moment.
Understanding Memory: A Mystery Even Without Dementia
Our memories, like our minds, remain largely enigmatic. Even without dementia, we don’t fully comprehend how our emotions influence our recollections. Some experiences stick with us vividly, while others fade away. This natural variability in memory reminds us that cognitive changes in dementia are part of a broader spectrum of human experience.
How many of us have unexpectedly forgotten an important deadline, or lost track of time and missed a doctor’s appointment? And perhaps you have accidentally found yourself spending an hour looking for the glasses that were already on top of your head? We don’t know what we don’t know, and when we get older, sometimes our lives can be so overwhelming that we may need even less of that information just to survive.
The Emotional Impact on Memory
Feelings play a crucial role in shaping our memories. Strong emotions, whether positive or negative, can enhance or distort our recollections. For those with dementia, emotional memories often persist even when other details fade. This highlights the importance of creating positive emotional experiences in compassionate caregiving.
You may be wondering if it makes sense to share your pain with a loved one when that loved one might forget and ask you about it again. This is ultimately your choice. It may surprise you what in fact another person can absorb and keep when the news has more of an emotional impact. The less you inform your loved one of what is going on with you, the more likely that your relationship will suffer. Sharing your truth may have some more valuable consequences than hiding it, particularly if it is something you are still grieving.
The Fear of Dependency: Breaking the Cycle
Many new caregivers may also worry about becoming dependent on their children in the future because of the genetic and environmental factors that cause dementia or alzheimers. This fear of a never-ending cycle of care can be paralyzing. However, it’s essential to remember that each caregiving journey is unique. Focus on the present and the meaningful connections you’re creating through compassionate caregiving. After all, being able to control what you remember is only an illusory attempt at being in control of life in general.
Embracing the Present Moment
Compassionate caregiving teaches us to value the present. By focusing on current needs and experiences, we can reduce anxiety about the future. This mindset not only benefits the person with dementia but also helps caregivers find joy and purpose in their role.
The Seven-Idea Limit: Simplifying Care
Research suggests that any person can typically hold about seven ideas in their mind at once. This concept is particularly relevant in dementia care. By simplifying routines and focusing on essential information, caregivers can reduce stress for both themselves and their loved ones.
Overwhelming someone with more than two or three ideas at a time is not helpful for instance in a situation when you need an answer or support for planning an appointment within 24 hours for instance. Focus your requests into the minimum necessary to relate the urgency of the situation, while still listening to the other person and understanding their own needs.
Imagine what your loved one’s seven memories might be that they are currently juggling in their short term memory. If they have difficulty recalling more than one thing, asking how many they think can be recall at one time might be helpful.
Strategies for Simplification
- Create clear, concise daily routines
- Use visual cues and reminders
- Break tasks into smaller, manageable steps
- Focus on one activity at a time
- Eliminate unnecessary clutter and distractions
Unexpected Positives: What Improves with Dementia
While dementia presents many challenges, there are aspects of life that can actually improve. Recognizing these positive changes can bring hope and a fresh perspective to compassionate caregiving.
1. Increased Emotional Authenticity
Many individuals with dementia express emotions more freely and authentically. This openness can lead to deeper, more genuine connections with loved ones. Compassionate caregiving involves embracing and responding to these authentic emotional expressions.
2. Living in the Moment
People with dementia often develop an enhanced ability to live in the present. This mindfulness can be contagious, teaching caregivers to appreciate small joys and simple pleasures. Compassionate caregiving includes savoring these moments together. There are some interesting studies that theorize that adding cheese to your diet can improve your memory.
3. Rediscovery of Past Interests
Sometimes, dementia can reawaken interests or skills from the past. A person might rediscover a love for art, music, or nature that had been forgotten. Compassionate caregiving involves nurturing these rediscovered passions and finding new ways to engage with them. If our loved one has lost the memory or will to speak for instance, supporting them with music or artwork might be especially helpful.
Depression and Dementia
Research indicates a potential connection between depression and increased dementia risk. However, it’s unclear whether depression is a risk factor or an early symptom. Compassionate caregiving includes addressing mental health needs for both caregivers and care recipients. Keep in mind that for some people, cognitive changes may also signal more than mood changes but also personality changes, and while some may change for the worse, others may be positive changes.
ADHD and Cognitive Health
Some studies have explored potential links between ADHD and cognitive changes later in life. However, the relationship is not fully understood. Maintaining overall brain health through lifestyle choices is beneficial for everyone, regardless of ADHD status.
Embracing Empathy in Compassionate Caregiving
Empathy is the cornerstone of compassionate caregiving. It involves understanding and sharing the feelings of another. For caregivers, developing empathy can transform the caregiving experience, creating deeper connections and reducing stress.
Cultivating Empathy without Compassion Fatigue
- Practice active listening.
- Validate emotions, even if you don’t understand them
- Respond to the feeling behind words or behaviors
- Use nonverbal communication to show understanding
- Take time for self-reflection and self-care to prevent burnout
The Mystery of the Mind: Embracing Uncertainty
Our understanding of the human mind, with or without dementia, remains limited. This uncertainty can be both challenging and liberating. By accepting that we don’t have all the answers, we open ourselves to new perspectives and approaches in compassionate caregiving.
Finding Peace in the Unknown
Embracing the mystery of the mind can reduce anxiety about the future. Instead of trying to control or predict cognitive changes, focus on creating meaningful experiences in the present. Compassionate caregiving involves finding joy in the journey, even when the destination is unclear.
Building a Support Network
Compassionate caregiving doesn’t mean doing everything alone. Building a strong support network is crucial for both caregivers and those with dementia. This network can provide practical help, emotional support, and opportunities for respite. Check your local 211, library, or senior centers for possible resources for elder “memory care” supports. They may have some life experience to impart not only as caregivers but as survivors. Here is a related article from AARP.
Creating Your Circle of Support
- Reach out to family and friends
- Join caregiver support groups
- Explore community resources for dementia care
- Consider professional help when needed
- Don’t hesitate to ask for and accept assistance
The Power of Adaptability in Compassionate Caregiving
Flexibility is key in dementia care. As needs and abilities change, caregivers must adapt their approaches. This adaptability is a strength, not a weakness. It allows for creative problem-solving and personalized care.
Strategies for Adaptable Care
- Regularly reassess care needs
- Be open to trying new approaches
- Celebrate small successes and learn from challenges
- Adjust expectations as needed
- Stay informed about new developments in dementia care
- Everything in moderation (regarding foods & non-processed cheese)
If your loved one is asking about something repetitively and you don’t want to record anything, it may be difficult to hear the same question. Your mood does not have to be the barometer of how well your loved one recalls any particular thing. It is helpful to remember that you chose to keep your loved one with you in their time of need the same way you needed that person as a child. You may also want to consider that no one, not even you will have a perfect memory.
Here is an interesting thought experiment. Let’s pretend you are the one constantly forgetting the same things that your loved one is forgetting. See if you can ask the same questions you know your loved one will ask before they do, and see if you can predict whether or not that person will know the answer this time, while sharing your observations about what might be affecting this particular memory. Is that memory affected by feelings about something that you feel differently about?
Are you living with your loved one? Consider the possibility of using a light up bulletin board that you can both easy see and write notes on, putting it in a place where both of you commonly interact to help give her reminders about what news may have been shared. While you are still able to remind her of what was said verbally, it may be easier for both of you to learn to use this shared memory tool. Similarly a digital photo album may help remind her of what has occurred especially if you are able to share videos there with her and voice memos of what has just been said.
Conclusion: The Heart of Compassionate Caregiving
Compassionate caregiving is a journey of love, challenge, and growth. By embracing empathy, accepting uncertainty, and focusing on meaningful connections, caregivers can find fulfillment in their role. Remember, you’re not alone on this path. With support, understanding, and compassion – for both yourself and your loved one – you can navigate the complexities of dementia care with grace and resilience.
There has been some research that claims that unprocessed cheese might support your memory. So if you happen to be a fan of Quantum Leap and know Sam Beckett’s catch phrase about his “Swiss Cheese memory” he might have found an accidental synchronistic connection and a perfect analogy for the human condition. Each of us have holes in our memory and stronger bridges elsewhere. We each must take a leap of faith that our memories are true …hoping each time that the next leap will be the leap home.
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