Aged to Perfection

Learning to be zen and mindful is something that takes incredible focus, dedication and practice. There are entire fields of study dedicated to mindfulness and how beneficial it can be to our overall health. Living in the moment can be your goal for this new year!

People with advanced dementia or Alzheimer’s disease can teach us a lot about how to be in this moment, completely and fully. 

When you spend time with someone who has dementia, they are present in that moment and they’re acutely aware of their environment around them. They are noticing sights and sounds and temperature variations at that particular moment in time. They may not be able to articulate it entirely, but they are very much present in the moment.

The challenge is usually more for us than it is for them.

We are the ones who have a hard time slowing down. How many details from our immediate environment do we miss completely because we’re totally absorbed thinking about the past or worrying about the future? 

When you spend the afternoon with someone who has dementia, they are truly with you for that afternoon. They are not creating a grocery list in their head. They aren’t worrying about what to cook for dinner later. They aren’t wondering if they’ll have enough time to squeeze in an extra errand after the visit. They are present, with you, at that moment. 

Sometimes, someone with dementia will jump from one topic to the next and you might think that they weren’t engaged in the conversation if their brain was heading in such a different direction than yours. Remember that the connections between areas of the brain and the way information is stored, retrieved and processed are very much impacted by dementia. 

Two different topics that to you seem unrelated, might be connected in an abstract way for someone who has dementia.  In their mind, those two topics may be connected and to them, it feels that the conversation is flowing.  They aren’t feeling that the conversation is disjointed; they are following the conversation exactly as their brain is permitting at that moment. They are entirely present and engaged; their brain is just taking a different route than your brain.

Sometimes when someone has advanced dementia they may be using the knowledge that they gained early in their life to make sense of their world.  They may ask for their parents; they may call you by their sibling’s name. They may reference attending school, or planning for their wedding, or having their first child. Sometimes, people interpret this to mean that someone with dementia is “living in the past.”  This isn’t true. 

Someone with dementia is living entirely in the moment today—they are as much in the moment as you are. Their brain is just relying on information from decades ago to explain what they are experiencing in this present moment.  They recognize that you are a person who is close to them and very much connected to them, and their brain uses that archived knowledge when it assigns the name of their sibling to you.

They are not living in the past; they are engaging with you at this very moment. They are just relying on data from their long-term memory that is no longer reliable. But be aware that they are very much present in the moment and acutely aware of the information they’re absorbing through their five senses.

We can learn a lot from our friends who have dementia. If we can join them, at their pace, to experience the world around them, we can have a very zen moment. We can learn to notice and appreciate small details.

When you think of family caregiving which words come to mind? 

Burden

Stressful

Sad

Depressing

Exhausting

Frustrating

Honour/devotion

Meaningful

Blessing

Joyful

Humour

Fulfilling

What creates the difference between the first column experience and the second column?  How can family caregiving be both frustrating but joyful, a burden and a blessing?

Here are 4 survival tips to take your family caregiving experience away from the first column and into the second column.

1. Take care of yourself

It may sound trite, but self-care is crucial.  If you don’t care for yourself, you’ll have nothing left over to give to anyone else.  You need to allow yourself time to refuel. How you re-energize will be unique to you; there is no right or wrong answer.  Maybe you exercise, or take a warm bath, or play an instrument, or read a book.  It doesn’t matter what you choose to do; it matters that you take time for yourself and prioritize your own self-care.

2. Allow yourself to be "off-duty"

It is not reasonable to expect yourself—or anyone else for that matter—to work or be on-call 24/7. And yet, when in the midst of family caregiving, people often hold themselves to an unrealistic standard of doing it all, all of the time. You need time when you are not “on-call”.

This includes elderly spouses who have assumed the caregiver role and who live together. It can be tough for the caregiving partner to feel “off-duty” when they are at home together with their partner who requires care. Respite care is critical to help both halves of a couple remain healthy—both physically and mentally. 

Feeling “off-duty” also applies to family members who are receiving constant phone calls from their elderly loved ones.  They need time when they can turn off the ringer and not field any phone calls—a timeframe when they are “off-duty” from repeated calls.

3. Enlist support before a crisis emerges

All too often people will say: “Dad won’t accept help from anyone else, so I have no choice!”  Then a crisis occurs and it is Dad who has no choice—he must accept help from another source because you, the family caregiver, are now experiencing your own health issue related to burnout.  Sure enough, Dad does accept the help, although it might have been a smoother introduction to care had it not been a crisis situation.

It will be a kinder transition for your father to accept outside support in a graduated care plan, rather than abruptly. With advance notice and the luxury of time, caregivers can be selected to match your father’s personality and preferences. In a crisis situation, you might have no choice but to get a caregiver—any caregiver—in place the same day.  A more ideal match could have been made with advance planning.

Best of all, your burnout can be prevented in the first place! It is far easier to prevent burnout by providing support early on than it is to recover after burnout has occurred. 

4. Protect family roles and relationships

Caregiving can upset the long-ingrained roles and family dynamics.  A husband who is suddenly thrust into the position of caring for his wife may feel ill-equipped for the role of the family caregiver. He doesn’t feel like a husband. . . he feels like a caregiver.  And she doesn’t feel like a wife. . . she feels like a patient. Their interaction as husband and wife has been interrupted and they begin to interact as patient and caregiver, which may start to stress their marriage.

It is important that key family roles and relationships are preserved. That couple needs to continue to feel like a married couple.  A parent and child need to preserve their mother-son relationship.  It may be best to let certain elements be provided by a professional caregiver so the family relationships can remain intact. 

Family caregivers are SO important to the health and well-being of their loved ones.  It is crucial that their health and sanity are protected.  If the family caregiver burns out, then there are two people requiring care! 

The only way to survive family caregiving and find the positive is to take care of yourself, have time that you are "off-duty", get help in place before it's too late, and aim to protect family roles and relationships for as long as possible.