Aged to Perfection

Family caregiving is an honourable endeavour and can be intensely meaningful and fulfilling.  But not all families are the same, and there are situations where family caregiving for an elderly parent or relative may not be suitable. In some situations, attempting to be a family caregiver can actually cause more upset to the overall family than enlisting external help.  

Here is a top 5 list of reasons where family caregiving may cause more strife than benefit.

1. Siblings rivalry was never outgrown

Do you still squabble with your siblings as much as you did when you were children?  Family caregiving can be challenging in and of itself; add sibling rivalry and the emotional toll just jumped to a whole new level. Siblings who exert more effort competing than cooperating will not likely set their personal issues aside and be completely agreeable over care for mom or dad.

When there are long-standing sibling rivalry issues it often ends up feeling as if you can’t do anything right. No matter which action you take, it is misinterpreted by your siblings. You provide hands-on care, it is criticized; you step back to allow your siblings the opportunity to participate, and you’re labelled as “uninvolved” or “being selfish”. With dynamics like this at play, involved family caregiving likely won’t heal sibling wounds. Rather, there is a great risk that the sibling divide deepens.

In family caregiving, the recipient of care—your elderly parent or grandparent—needs to be the focus. Sibling rivalry can’t continue to be the main issue at hand. Out of fairness to your elderly loved ones, you may want to enlist external support so that long-standing sibling rivalries don’t rear again over family care.

2. Your parent is intensely private or modest

Every family has different comfort levels around privacy and personal care. For someone who was intensely private and modest her entire life, she may find it terribly uncomfortable to have family or friends assist with personal care, such as bathing or toileting. An elderly mother may not wish to have her sons bathing her—and her sons are often even more uncomfortable with personal care than is she!

For these families, the kindest option is to have someone else provide personal care—someone who was not previously known to the elderly mother. This way, she can maintain her dignity and privacy in front of her sons, her daughters-in-law, and her friends. Receiving support from a caregiver whose role it is to provide personal care is exceedingly different than forgoing privacy and modesty in front of family and friends. It is less about gender and more about personal preference and maintaining dignity.

The role reversal between parents and children is a complex issue that is deeply personal. It is challenging enough when adult children are suddenly managing schedules and household needs; crossing into the realm of personal care can exacerbate the role reversal.

3. Personality Clashes

Let’s face it—most families are not like the Brady Bunch. Not everyone gets along, and there are decades of history by the time caregiving for elderly family members arises. The elderly grandfather who suddenly needs assistance does not develop a new personality just because he suddenly requires care. If he was ornery his whole life, it is likely he will be ornery in his senior years too!

If he burned bridges with various family members in the past, it may be unrealistic to expect family members to set aside their grudges and hurt and begin family caregiving for Grandpa. In addition to past hurts that may be resurrected, those same family members are now exposed to a whole new host of potential personal insults. Grandpa is also less likely to be a gracious recipient of care from family members with whom he is accustomed to being ornery. There is a better chance that Grandpa will actually be kinder and more satisfied receiving care from someone outside the family.

It may just be that parent and child have two different personalities or styles that clash in a caregiving situation. Perhaps an elderly father prefers to be very detailed, slow and meticulous, doing things in the particular way that he has always done. His adult daughter—who loves him dearly and is trying so hard to help—is fighting her natural tendency toward efficiency. She wants to accomplish tasks quickly since she is already torn between her demanding career and her own family waiting for her at home.

The father and daughter have different styles and different personality types—something that may have been complimentary at other stages in life. But when it comes to caregiving and ensuring that her father has the quality of life that he prefers at whatever pace is comfortable to him, his daughter would be well-advised to step back and allow a professional caregiver to assist her father in the way he needs.

4. You're just not a caregiver at heart

Truth be told, you’re just not the caregiving type. We can’t all be good at everything; being compassionate, gentle and patient just aren’t your top strengths. There’s a reason you didn’t become a nurse or an activities director at a retirement home. You know your strength, and it isn’t caregiving.

There’s no shame in acknowledging that you’re just not the right person for the job. Your strengths can be utilized in other ways to support your elderly loved one.  when it comes to personal care and more intimate needs, you would be wise to enlist the support of someone who is particularly compassionate, gentle and patient for the sake of your elderly loved one. They deserve the best and a trained caregiver can provide what you cannot.

5. You don't live locally 

Today’s families are more spread out geographically than ever before. Family members may be time zones apart, and visiting regularly just isn’t possible. When you do visit, you stay for a week at a time and try to get everything mom needs, but you’ve noticed that each time you visit, she needs a little more than last time. You feel bad that she’s on her own between your visits, and you worry about her more and more all the time.

It’s more than just stocking up on groceries and running errands. You want to know that mom has a reliable caregiver to accompany her to appointments since doctor’s appointments cannot always wait until you’re in town. You want the best for your mother. She deserves consistent care that isn’t dependent upon your work schedule. You also want the peace of mind that someone is checking in on your mom, even when you are not in town.

If your family fits into any of these 5 categories, then family caregiving may not be advised.  Family caregiving is highly stressful and involved in the best of situations, but if you add any of the above five elements, you may want to enlist some additional care for your ageing loved ones. 

It’s okay to admit that your family is better suited to enlisting caregiver support from outside the family. Doing so maybe just the thing your family needs to keep everyone sane and happy!

Humans are wired to be busy, to be productive, to be doing something.  Even when we are intentionally taking a break, we have to consciously remind ourselves to relax and not default to our busy-mode. 

This drive and desire to be productive is deeply ingrained, and for people who have heeded the productivity call their entire lives, it is a well-worn feedback loop. They feel the need to be productive, so they remain constantly busy, and the fruits of their labour are the visible reward for being constantly busy.

What happens when dementia interrupts that feedback loop?

When someone’s dementia has progressed, he has a harder time remembering how to do activities he did his entire life.  George, a gentleman who enjoyed woodworking and fixing things around the house may no longer understand how to use his tools.  He gets started on a task, and partway through forgets what he was doing, leaving a wake of unfinished projects behind him.

His desire to continually work on things around the house does not go away.  His drive for productivity and doing something meaningful and important will far outlast his ability to operate his tools. George was never one to sit and relax, instead, he was always working away on something, and that desire can carry on even as his dementia progresses.

The fact that George can no longer successfully fix broken household items will not prevent him from trying to do so. In fact, he may be inclined to ‘fix’ items that he is certain are ‘broken’ because he’s now having trouble operating household appliances.  Frustrated relatives might try to insist “just sit down and relax!” but since that was never in George’s nature, it’s unlikely he’ll be settled for long. George’s brain is sending him the signal to be productive. He has a strong sense that he should be doing something, he’s just not sure what that something is.

When George cannot easily find a task that meets his need to be productive, he will create one. Dementia has interfered with his ability to follow through with all the tasks he previously did. If the signals in his brain are scrambled, the output of his activities may also be scrambled.  He is trying his best to ‘fix’ the ‘broken’ wastebasket and has dumped its entire contents on the floor.  To an exhausted family member, this is just one more dementia behaviour that doesn’t make any sense and has now created a mess to be cleaned up.

What George needs are activities that he can manage.  Dementia has impacted his ability to do the same activities in the same way he did them 20 years ago, but it has not taken away his ability to do all activities. What George needs is someone who can customize familiar activities to match his current ability level. He needs someone else to break down an activity into individual tasks, and do only one small task at a time. George is still capable of doing many things. He needs direction and he needs cueing to successfully manage a sequence of complex activities.

George is bored. And when he is bored, his brain will create an activity to do. Even if the activity doesn’t make sense to someone else’s brain, even if the activity creates a mess or breaks something, or causes a disturbance, his brain is desperate for activity and stimulation. In the lack of meaningful stimulation, the brain will create its own entertainment.

The underlying cause of many so-called dementia behaviours is boredom.

When someone with dementia is occupied with meaningful activities that create a sense of purpose and productivity, their ‘behaviours’ are often drastically reduced. Their need to be productive is met and they feel satisfied.

Providing meaningful activities for someone with dementia is one of the most effective ways to reduce undesired behaviours.  It does not require medication changes and has no side effects.  However, it can be incredibly time-consuming and does require an enormous amount of patience.  Time and patience are two things that family caregivers often have in short supply—they’ve used up both!

Professional caregivers can fill the gap. Professional caregivers can take the abundant time and patience required to keep people like George engaged in meaningful activities. Caregivers help clients with dementia to connect to their passions and interests by making activities accessible.  Caregivers modify activities to match their client’s ability level—that might be fluctuating by the day or by the hour—to ensure that activities are never too difficult or too easy and boring.  

When people are enjoying hobbies that they love, and they are not frustrated or bored, their so-called behaviours are drastically reduced.  What passions might we re-inspire in your loved one, to spark their desire for meaningful engagement and productivity?