How to Deal With Dementia in a Parent
The Caring Generation® – Episode 145 July 20, 2022. Learning how to deal with dementia in a parent can be an ongoing challenge for family caregivers. Caregiving expert Pamela D Wilson shares tips to help family caregivers prepare for this unpredictable journey.
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Family caregivers ask, how to deal with dementia in a parent? While there are many aspects of managing dementia care for elderly parents the focus of this article is mentally shifting to gain a different perspective about caregiving activities and life events.
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Gaining insight can help shed light on why thinking differently and learning about dementia, Alzheimer’s, and other types of memory loss are valuable. Additionally, learning how to communicate and respond positively to behaviors is another aspect of how to deal with dementia in a parent.
Forgetfulness and Disorganization
Let’s begin with how to recognize and deal with dementia in a parent. Early on, slight signs of forgetfulness may be dismissed as normal aging for a parent, spouse, or another family member. You might hear, “well, everyone gets a little forgetful with age, or mom and dad have always been a little absent-minded and disorganized.”
Now, if you don’t spend a lot of time with a parent because you don’t live near them or maybe you live in the same town or area but don’t see them often, noticing signs of memory loss can be challenging. Add to this consideration what I call workarounds.
Suppose your parent is highly educated, for example, with a master’s degree, or was an engineer or worked in a field that required a lot of thinking and planning. In that case, mom or dad may be able to hide or manage the effects of early-stage memory loss.
Plus, if there is a lack of awareness about dementia or Alzheimer’s, forgetfulness and creating a process for workarounds mot not be seen as anything unusual. These are routine activities a parent would have to take to solve any other problem they face in life.
Managing Until Elderly Parents Can’t Manage
I had many clients, women in particular, who were able to manage for a long time until their memory loss advanced to a point where living at home alone became unsafe or difficult. In these cases, a friend or someone close to them—not necessarily a family member—often brought up the topic of memory loss and suggested seeing a doctor.
There may have also been other noticeable signs like getting lost when driving a car, forgetting to pay bills, and other things, like water flooding the home due to forgetting to turn off a faucet. The other challenge is that parents or spouses may not regularly see a doctor if they are healthy and active.
Why Not Diagnosing Memory Loss is Common
A lack of regular medical care is valid for persons of all ages who are not knowledgeable about the importance of annual check-ups. If parents attend annual check-ups but don’t mention any concerns about memory, a primary care doctor isn’t going to take any steps to identify memory loss as a concern.
So, what you have in these situations—which is unfortunate—is a person who may or may not have insight into the degree of their forgetfulness. If a friend or a family member brings up the concern, there may be denial about being forgetful or refusing to see a doctor.
The Importance of Annual Medical Check-Ups
This same lack of awareness applies to any health condition—heart disease, diabetes, COPD. When these diseases remain undiagnosed, they cause more problems later. For this reason, an annual check-up has benefits even if you think you don’t need it.
Even if one sees a primary doctor who confirms early memory loss, the diagnosis may be classified as mild cognitive impairment or MCI, which may not be taken seriously.
If the doctor a parent sees is not comfortable or experienced with advancing memory loss or if you or your parent don’t ask questions, this is a missed opportunity to learn about preventative steps.
Benefits of Seeing a Medical Specialist
So with MCI, there can be this sense of limbo about having advancing memory loss with a person wondering, “do I or don’t I?” Not having enough or the necessary information is why looking at research and asking questions about memory loss testing becomes very important.
Family caregivers must be proactive and ask how to deal with dementia in a parent to avoid surprises in the future. Unfortunately, my experience is that most primary care physicians lack experience in diagnosing dementia and Alzheimer’s.
Connecting with medical specialists for a diagnosis and prognosis of what the future looks like is critical. Make an appointment with a neurologist, neuropsychologist, or geriatrician. Research confirms that mild cognitive impairment is likely to translate into dementia or Alzheimer’s.
Managing Chronic Disease
Let’s take this thought process and relate it to other chronic diseases like heart disease or diabetes to give a different perspective since this is the focus of this episode. Heart diabetes and diabetes—when they advance—are serious illnesses.
Both can contribute to a diagnosis of dementia and result in circulatory issues, potential strokes, and other health complications. So let’s look at something as simple as high blood pressure or pre-diabetes blood sugar readings.
In the early stages, high blood pressure and blood sugar readings may not show obvious signs for many people. For this reason, identifying and taking steps to manage these conditions in the early stages is vital for health and well-being—similar to identifying memory loss at an early stage.
The earlier you notice these conditions, the more opportunities you have to adjust your lifestyle habits to remain healthy and avoid more health conditions. For example, high blood pressure can turn into significant heart disease, requiring bypass surgery, experiencing circulatory issues or having a stroke, congestive heart failure, and other conditions if not monitored.
Learn More About Managing Heart Disease
More on how to manage heart disease is on The Caring Generation Podcast Episode 5 Why Caregiving Takes More than Love featuring an interview with Dr. Melissa Walton-Shirley.
Learn More About Managing Diabetes
The effects of high blood sugar can be just as severe. Long-term complications of high blood sugar include heart disease, nerve pain, kidney disease, vision, dental, and skin conditions.
More on the topic of managing diabetes is on The Caring Generation Podcast Episode 16, Why is Patient Education and Engagement So Important. Listen to my interview with Dr. Mayer Davidson.
Both conditions cause problems with other body systems and organs. I like to say that the human body is a chemistry project that, when kept in balance, is positive, but when something happens, one thing causes another.
How to Deal With Dementia in a Parent
So, if you are an adult child noticing changes, the best way how to deal with dementia in a parent is to be kind and direct. For example, “mom or dad, I am noticing changes in your ability to remember information. Are you noticing anything?”
Let’s assume that an elderly parent says no. The next step is to say I’m concerned and would like to get this checked just in case it is an early sign of something important going on. Then ask if you can make and attend the doctor’s appointment with a parent.
Family Denial About Memory Loss
At this point, your siblings—if you have them—may be in denial, especially if they don’t live near your parents. Refusal or resistance is a starting point for how to deal with dementia in a parent and notice your biases or beliefs about the diagnosis.
So let’s say that your only frame of reference is a friend’s mother who was diagnosed with dementia. Your friend’s experience may not have been good, and you remember this.
If so, your thoughts around what might happen with mom or dad may be slanted negatively. This negative thinking may relate to the brain’s activity trying to make sense of an event by relating it to something in a past experience.
Responding to Heuristics
There is a word for the brain trying to make sense of information. It’s called “heuristics.” The brain prefers to be efficient and save time.
So what happens is that the brain relates A to B and decides for you. Heuristics supports the brain and may lead to avoidance of assessing new evidence or beliefs.
The heuristics process can result in being closed-minded—or simply stubborn—unless one realizes this process and stops the brain from being efficient and sometimes lazy.
Emotions Sway Decision-Making
If you have been a family caregiver for any length, you might realize that emotions sway the brain and the decision-making process. For example, I had many adult children say to me, “mom or dad is being purposely difficult to be mean to us or to get back at us,” when this was not the cause.
You see, this simple explanation for memory loss was based on heuristics because it avoided going to thoughts of making a doctor’s appointment, receiving a diagnosis, and then deciding what to do next.
It’s the brain saying, “let’s just put a rug over the issue. Cover it up. Hide it. Maybe it won’t get worse.”
Experiencing denial specific to diagnosing memory loss or any chronic health condition likely to advance is not the best solution. Fear of the unknown can be a deterrent for information seeking.
How often have you been in a situation that blew up and veered out of control because someone preached doom and gloom, and the issue—after researching— didn’t turn out to be so bad?
Ask Questions and Challenge Assumptions
When there is an inability to control the brain from making an immediate decision instead of asking questions or challenging assumptions, family members can fall into a herd mentality or be led by a majority who think the same.
As the caregiver, you may be in denial because you realize that if mom or dad is diagnosed with Alzheimer’s, you as a child might be carrying the gene. Dealing with dementia in a parent or Alzheimer’s can be scary.
If you are an adult child caregiver, facing the possibility of succumbing to Alzheimer’s may be intimidating. The upside of knowing is that you can be proactive about all aspects of your health.
Responding to Unexpected Events
When you think about responding to news—good or bad—the way you feel about a parent’s diagnosis might arise from the foundation of how your parents managed through challenges throughout their lifetime. Dealing with dementia in a parent can mean looking at the past.
Were your parents practical and realistic? Did they search for and want information so that they could be prepared, or did they respond to situations as they blew up or grew to be out of control?
Were they direct and practical in their response to life events? Or were your parents the opposite? Instead of being planners, maybe they were procrastinators or dreamers who blamed others when things didn’t work out as planned.
If so, you may have heard things like, “we’ll deal with it when it happens,” or “we don’t talk about such things because if we do—the event is certain to happen.” Learning how to deal with dementia in a parent is even more challenging when a diagnosis comes late and memory loss has advanced.
Looking at Dementia from a Different Perspective
It’s also tricky if the healthy parent, siblings, or other family members are in denial about the day-to-day situation. So how can you deal with the stress of family members or yourself who might be struggling with looking at the problem from a different perspective?
How can you be more empathetic, compassionate, or proactive instead of being reactive or stuck in a mindset not open to change? Experiencing any change, especially if one is already a caregiver facing many unexpected situations, can result in hesitance or procrastination.
Losing Control Over Life
How many caregivers and the persons they care for feel like they’ve lost control of their lives? Loss of control is an experience that can lead to avoiding change or a shift in mindset.
What might be even more difficult to see is that there is magic in taking a different perspective. How might you look at the current situation of caring for an elderly parent with dementia if you were watching from the outside and the caregiver was your best friend?
Steps to Gain Perspective
Here are a few steps to take and questions to ask yourself to set the stage for gaining perspective.
1 – What will life be like in 12 months if you do nothing today?
2 – Assume the time is one year from now. What is your stress level? Is the anxiety better? What does your future self — know that you do not?
3 – Write a letter to your future self to explain what’s happening today.
4 – Have you dealt with a similar stress in the past year? What actions did you take? For example, did you attend meetings, send emails, perform research, or gain knowledge? Who did you speak to and about what?
Pulling yourself out of the present increases objectivity. So let’s think backward for a moment.
Learning from Past Events
We can’t change past events, but we can learn from them. What limitations exist regarding your involvement if your current caregiver situation is not ideal?
- Are you spending more and more time in care activities versus doing things that are important to you?
- Do you feel like you had no choice in becoming a caregiver?
- Are your parents refusing outside help?
- Do siblings refuse to help?
- Have you asked for help?
- Is caregiving affecting your health and personal relationships?
- Are you considering giving up a career or job to become a full-time caregiver?
Giving Yourself Advice
Imagine that the time is five years into the future, and you are no longer a caregiver. If you were to write a letter of advice to yourself today, what would the letter say?
Because day-to-day activities relating to caring for parents can be emotionally distressing, making time to remove yourself physically and mentally has benefits for gaining perspective. Daily routines can put anyone in a mental and physical rut.
How to Recognize Feelings of Being Powerless
How many of you have ever had a hamster for a pet? I did as a child. In fact, we had several hamsters.
The little guy or gal gets in that wheel and runs and runs and runs but goes nowhere. So many caregivers feel like they are stuck and going nowhere.
Family caregivers work and work and work, and nothing seems to improve. The health of parents, a spouse, or a loved one, continues to decline, and the caregiver feels powerless.
Many Caregivers Feel Trapped
Most hamsters, if yours were or are anything like the ones I had as a child, spend most of their time figuring out how to break out of their cage, sometimes ending up in a worse situation.
Like falling down a furnace vent and being unable to get out, being eaten by the family cat, or being harmed by the dog. Or the ambitious hamster faces another unfortunate event that leads to death.
Similarly, family caregivers can feel trapped like a hamster in a cage—but not always face such tragic situations when escaping.
I know many family caregivers who delay or give up their careers, delay having children, maybe their marriages break up, or if they have children, the children feel ignored and act out at school. Figuring out how to deal with dementia in a parent who will need care for an extended time takes work.
Regain Focus and Stability
So let’s talk about a few practical steps to regain focus and perspective plus reduce caregiver anxiety and stress. These steps include tips for communicating with parents who can become agitated, resistant, or angry.
Many caregivers I know and speak with are great list makers. For myself, when I might be feeling overwhelmed, spending time organizing and making a list of the next steps has a calming effect. The result is that I feel that everything I need to do is more manageable and scheduled.
On the other hand, I know many people who keep going and don’t make lists or plans because they think that making time to think and plan is not a good use of time. However, if you take these steps, you will find that time spent investigating, planning, and creating step-by-step processes will save you time and worry.
Your actions will reduce the likelihood of unexpected ongoing situations. And, if something unexpected happens, you’ll already have a plan to implement.
The Importance of Planning Discussions
The discussion and planning components of how to deal with dementia in a parent can help the entire family if you become the person who leads this effort. But, you might wonder, how do I become the person who directs activities when parents or siblings seem to be fighting me every step of the way.
Let me share a thought I’m taking from Dr. Wayne Dyer’s book Wishes Fulfilled (page 48) about working from the ego versus a place of peace and service. This question or situation can be invaluable when you feel stressed and pulled in multiple directions.
Choosing to Work from the Ego or Peace
Set aside multiple times each day to ask yourself this question.
Right now, in what I am about to say or do, do my desires stem from my lower self (ego) or my higher self (peace)?
The ego is about self-serving, ownership, winning, judging, and so on. On the other hand, the higher self is about serving, loving, and being in a nonjudgmental state of peace.
When you think about your responses to this question, you might realize that you have more control over your actions than you think. Let me relate this idea to being around negative places or experiences.
Getting Mentally Unstuck
Dealing with dementia in a parent is challenging – there’s no doubt about it. So, where are you spending your time?
- Are you angry with mom or dad because they can’t remember things that you think they should be able to remember?
- Are you fussing with brothers or sisters who aren’t helping and are unlikely to assist in the future?
- Do you get caught up in the day’s news and become upset over things you have no control?
It’s so easy to be caught in a groundswell or tornado of emotions and problems and issues when dealing with a parent with dementia. Know that you can choose peace over ego and chaos. But you have to believe that you have this choice.
One way to know is to ask yourself the previous question and monitor your responses. The more you find yourself serving, loving, and being nonjudgmental, the more quickly you will be able to balance caregiver responsibilities.
As I mentioned, serving and choosing peace requires investigation and a lot of planning. So there’s work to be done.
Managing Family Disagreements
While parents or siblings may fight you today, your confidence level will rise, and your stress level will decrease when you create and work on the plan. Doing this work requires you do your research well in advance to know what to expect.
Planning for the future requires some level of participation by a parent with memory loss if their diagnosis is in the early stage. While receiving and talking about the diagnosis can be very emotional, once you and a parent learn the facts and the progression of memory loss, you can have conversations that plan for the practicalities of caregiving responsibilities and advancing care needs.
Never Assume You Will Be the Only Caregiver
The caveat here is never to assume that you will be the only caregiver or that you will be the caregiver forever. Life happens. The level of dedication you are giving today may not always be possible.
My recommendation is to create an activity-based and concrete plan documented in writing. This plan may initially have you as a helper. Still, as care needs increase beyond a certain number of hours a week, you agree on other options like paid caregivers coming to the home or a daycare program or eventually moving to a care community.
Initiating Hard Conversations
Moving through these steps forces hard conversations about money to pay for care and investigating public benefit programs. When dealing with a parent with dementia, taking these steps will reduce the anxiety of the situation on a daily, monthly, and weekly basis.
Avoid focusing on wondering “why this or that happened.” Instead, be practical about the eventual outcome of a parent dying from health complications related to dementia.
In some circumstances, the caregiver—the healthy spouse or an adult child—dies before the person who needs care. The role of a caregiver is stressful.
Dealing with dementia in a parent also means learning to deal with outside providers. For example, managing in-home care agencies, home health, doctor’s offices, nursing homes, hospitals, hospice care, and more.
When you are in the thick of things working with providers, return to the question about coming from a place of ego or a place of peace. The same goes for dealing with difficult siblings or even the person with memory loss.
Behaviors Are a Normal Part of Dementia
It is essential to recognize that much of the resistance and the behaviors that family caregivers experience result from memory loss—an inability to recall information or follow a conversation. So rather than giving lengthy explanations that may make you feel better as a caregiver, consider that a parent cannot remember the beginning of something you said by the time you get to the end.
Increasing forgetfulness represents the progression of memory loss progresses. So, keep conversations simple, and offer options.
For example, mom or dad, do you want A or B? Make sure your siblings or others who visit are familiar with the best ways to interact with parents with dementia.
How to Talk to a Parent With Dementia
A great resource for How to Talk to Parents with Dementia is on The Caring Generation Podcast Episode 26 How to Talk to a Parent with Dementia featuring an interview with Dr. Stephen Post.
Examine Personal Bias and Take on a New Perspective
Dealing with dementia in a parent is as much about examining caregiver biases and ways of thinking about situations as anything. For all caregivers of persons with memory loss, I suggest seeking as much education as possible, including joining an in-person or online support group.
Gaining education and knowledge about dementia is time well spent. I have a group on Facebook called The Caregiving Trap. I invite you to join to share your experiences and ask questions of caregivers, many of whom are in similar situations.
Looking For Help Caring for Elderly Parents? Find the Information Including Step-by-Step Processes in Pamela’s Online Program.
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