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How Does Dementia Impact Incontinence?

 

Your mother hasn’t been going out as much lately. She even declined a few outings with you recently, which is unlike her. Then you noticed a pair of soiled underwear shoved behind the toilet…and another soiled pair under the bathroom sink.

 

 

What she may be hiding is trouble with urinary continence.  She may be feeling embarrassed and is trying to hide it, or if she has dementia, she may be confused about how to cope with this new change.

 

There are many possible reasons and treatments for urinary incontinence.  Ensure your mother sees her doctor and speaks openly about what she is experiencing.  Many causes of incontinence can be addressed medically, and those should be addressed immediately.

 

You may be able to suggest some lifestyle adjustments that will help to support your mother’s bladder, rather than irritate it. Read our other blog that addresses natural ways to support the bladder. If your mother has dementia though, the source of her challenge may be related more to her functional abilities than to her bladder directly.

 

As your mother’s dementia advances, she may not be as responsive to the signals her body is sending.  By the time she realizes that her bladder needs relief, it may be too late to respond and she may not be making it to the washroom in time.

 

 

Another challenge can be complicated clothing. Buttons, snaps, zippers or belts may be proving a challenge in the washroom. The more barriers there are to quick washroom use, the more likely your mother is to be slowed down and not make it in time. Be especially aware of skirts or dresses with back closures since it may not be self-evident how to undo the zipper. Modified and accessible clothing may make it easier for your mother to be quick and self-sufficient in the washroom. Drawstring or elastic-waistbands are often the easiest to manage.

 

If your mother’s dementia is advanced, it is possible she is confused about where to find the washroom.  Washrooms are not always easy to find, especially for someone with dementia.  Often, washroom doors remain closed, even when unoccupied.  Someone with dementia may not think to open closed doors to see what is behind the door. They may not have an intuitive sense of where a bathroom is likely to be located within a home or apartment. Although she may have lived in the same home for years, or decades even, dementia can cloud her memory and obscure what was once familiar. If she cannot easily find the washroom, she will not make it in time when nature calls.

 

 

Once she is able to locate the washroom, she may be confused about what to do once she’s in there.  For some people with advanced dementia, the washroom can feel very confusing and overwhelming.  If the toilet seat lid is down, the toilet may not look familiar. A white toilet and white sink may look very similar and can be confusing.  A wastepaper basket may seem more familiar and is often mistaken for the toilet itself.

 

Sometimes people attempt to sit down facing the toilet, rather than with their back to the toilet tank, as it is typically used. Because it feels so unusual when facing backwards, there is no long-term memory to cue what to do next.  It can also be dangerous since balance is impacted and there is a risk of falling.

 

If someone needs cueing through each step of toileting, their apparent challenges with incontinence may be more related to functional abilities and less so to their bladder or bowel function. They may be able to hold their bladder or bowel and may even be aware of when they need a washroom, but the confusion sets in with how to use the washroom.  If someone is experiencing functional decline, various support measures can be implemented to promote independent washroom use.

 

 

Cue cards can be helpful for those who can read and interpret directions. If your mother is inclined to read instructions and follow the directions, a cue card in the washroom to cue each step may be helpful.  In some cases, colour coding the toilet seat vs. the sink can be helpful. Contrasting colours can make it easier to see which item is which. If cue cards and colour coding are insufficient, your mother may need a caregiver to cue her through each step of the toileting process. 

 

When functional ability is preventing someone from toileting successfully, look for which step is causing the confusion, or which component of mobility is posing the challenge

 

By solving that specific component, you can help support someone to toilet as independently as possible.  Engaging the support of a professional caregiver may also help in identifying precisely where the needs exist. For more ideas on supporting independent toileting and continence, contact us at Warm Embrace Elder Care.

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It's Okay to Ask for Help

 

When self-isolating at home, have you found yourself scrolling through random online updates more often than you want to admit?  If so, you’ve probably seen articles and posts about parents who are going crazy being cooped up with their children for weeks on end. Both the parents and the children are feeling the strain.

 

It isn’t just the parents of young children who are feeling the parent-child relationship strain. It can be felt at all ages but is showing up particularly strongly for those who have been thrust into a caregiving role that is more extensive than they anticipated.

 

 

Adult children of ageing parents who have dementia or other high-care needs may suddenly find many of their regular support systems removed. The Adult Day Program that your mother attended a few days weekly is now closed; her regular social groups at the church have shut down; even the PSW who usually comes to bathe her has not been coming. Your mother’s schedule is in upheaval and you have become the primary—and only—caregiver.

 

It can be pretty overwhelming to suddenly find yourself in the full-time position of caring for someone with dementia. While you’re happy to help sometimes on some days, being the only support person day after day is wearing you out and you’re starting to feel the strain.

 

 

It is okay to admit that, just like your mother, you’ve experienced a massive upheaval in your schedule and routine, with newly added responsibilities.  And though you may be tempted to think “I’m not working at the moment so I should be fully available to care for mom,” providing 24/7 dementia support is more than one full-time job.

 

Providing care to a loved one with dementia is more than just physically taxing. It can be emotionally exhausting as well. There are certainly very meaningful moments with laughter and joy, but when it is your parent or your spouse whom you’ve known for decades, it will undoubtedly be emotionally exhausting as well.

 

 

Just because you are home at the moment and may not be working does not mean that you are equipped to provide 24/7 dementia care. It is okay to acknowledge that sometimes, a professional is required and someone who is not related to your mother may be better able to provide the assistance she needs right now.

 

Fortunately, caregivers to the elderly are essential and permitted to continue caring for seniors. Here at Warm Embrace, we continue to serve our longstanding clients and we are also equipped to help families who are now finding themselves in need of more care.

 

As an essential service provider, we’re here to help your family through this difficult time. Contact us for more information.

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Being Factually Correct is Not the Point

 

When you break down the format of everyday conversation, you might be surprised how much it tends to be an exchange of facts.  We’re often using the old-fashioned newspaper reporter method of the W’s: who, what, where and when. Sometimes we also include the “why” and “how”, but often it’s just the first four W’s.

 

 

Conversation tends to report on who did what with whom, where they went and when.  We depend on each other to convey those “facts” in an accurate way, and we equate that with telling the “truth”.  Since we tend to consider “truth” as a value, we place a lot of importance on conveying facts accurately.

 

The reality is that any of us is only ever conveying our perspective, our experience of the world, our interpretation of events.  You know the old saying….” if there are 10 eyewitnesses, there are 10 different accounts”. I might even argue that you’d get 11 or 12 different accounts with 10 eyewitnesses!  We each have our own understanding of events or recollection of past events.

 

Oftentimes, a conversation that includes sharing past memories becomes an exercise of correcting each other’s recollections of the “facts” or telling the “truth”.  When different narratives emerge, a lot of effort is spent trying to reconcile those different narratives, assuming only one can be correct; or that details of each need to be merged and one variation decided upon.

 

The focus on “facts” and telling the “truth” makes conversation very difficult for those with dementia. 

 

Recalling the first 4 W’s is tough: who, what, where and when.  When someone’s brain has been impacted by dementia, their ability to recall precise details is impaired.  Short term memory no longer encodes details into long term memory.  When someone attempts to retrieve the details a few hours or days later, the information is no longer there since it was not encoded into long term memory.

 

 

Long term memory that was established decades ago may remain as the strongest memory.  Eventually, even long term memories are impacted by the progression of dementia. When those memories are affected, it will be the details and the “facts” of the memory that are first at risk.  Someone will continue to remember the feeling associated with a memory, but they can’t necessarily recall who was present, or when it occurred, or where exactly it was. They’re more likely to remember the “why” or the “how” of the event because those elements are typically more connected with the feelings of an event.

 

When trying to recall a memory, and someone with dementia or Alzheimer’s has an impression of the “why” or “how” of an event, their brain may fill in the gaps on some of the missing “facts” of the story to help it make sense. Their brain may provide a missing “who” or supply the “when” of the story—and those details do not line up with your recollection of the event. 

 

In fact, those supplied details may not line up with the version of the story that the person told yesterday. Each time they retell the story, their brain may have to supply a different missing detail.

 

Instead of focusing on the “facts” of the story, focus on the feelings.

  • Don’t worry about correcting the details that may have different from the last telling of the story. 
  • Don’t contradict the details or get worried about the “accuracy” of the story. 
  • Do listen to the “why” and the “how” of the story that starts to emerge.

Let your loved one explore their memory and remember that they are trying to put words to an emotional experience. The emotion of the memory may remain strong, but finding the words to express it can be difficult. If the details they supply keep being corrected by someone else, they may stop trying to articulate what they’re feeling.

 

 

Stop and consider: what is the purpose of this conversation? 

 

If it is a nice conversation between you and a parent, then enjoy it for all it is worth! Savour the clear moments, find the emotion underneath the words, and use it as an opportunity to connect.  Correcting “facts” will only inhibit the purpose of this conversation—which is to create a connection and convey love and caring.

 

If it is a conversation with your loved one’s family doctor, then the purpose of the conversation is different. Suddenly, the facts of a particular symptom are critical. In this case, having correct “facts” truly is the purpose of the conversation and being focused on precision is important.

 

When you consider the purpose of a conversation, you can remain focused on what matters most.  If exchanging factually correct information isn’t the point of the conversation, then don’t worry about correcting facts! 

 

If the purpose is to create enjoyment for your loved one, you can achieve that by supporting their feelings and their recollections.  Focus on the feelings, not the facts and you’ll find conversations far more enjoyable!

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What is Doll Therapy?

 

When someone has advanced dementia, their ability to complete tasks may become impaired, but their desire to have an important role and care for others often remains strong. While they may require quite a bit of assistance themselves, they are keen to offer assistance in return.

 

 

Caring for others is a deeply rooted desire for many people that persists throughout the journey with dementia. Simply trying to tell someone “you’re retired and you don’t have to worry about anything!” often produces more agitation. Instead, figure out how to tap into that desire to help for even better results.

 

One option is to provide doll therapy. 

 

Doll therapy allows someone with dementia to care for a doll as though it were a baby.  For some people, this can be highly effective and meaningful since it connects with identify—someone’s identity as a parent or a caregiver.

 

In some cases, a regular doll is sufficient. In other cases, a true therapy doll is more effective. A therapy doll is designed to be as life-like as possible. The doll is weighted so it feels similar to holding an actual baby.  Most are designed to look like a peacefully sleeping infant.

 

The ways that people interact with their own personal therapy doll can vary significantly.  We served two different clients, Mildred and Betty who each resided in long term care and had a therapy doll, but their forms of interaction with their dolls differed.  In each case, we let the client initiate the interaction with the doll and we matched their interaction.

 

 

Mildred treated her therapy doll as though it were a real child. She held the baby properly and laid it down to nap peacefully.  In this case, we mimicked Mildred’s interactions and also treated the doll as though it were real.  Often, Mildred wanted to put the baby’s needs above her own—she would decline to go to the dining room for dinner since the baby was sleeping and she didn’t want to disturb a sleeping baby. In this case, we offered to hold the baby during dinner so Mildred could eat.  We went together with Mildred to the dining room and sat by her table, holding the doll where she could keep an eye on her baby during mealtime.

 

Betty had quite a different interaction with her doll. Betty always wanted to have her doll nearby, but she didn’t always hold it the way one would hold a child. Sometimes she’d pick the doll up by its head, or carry the doll around in a plastic grocery bag.  She was comforted by having the doll nearby, but she didn’t interact with it as though it were real.  Out of respect for Betty, we handled the doll carefully, but rocking the doll throughout dinner wasn’t necessary for Betty’s peace of mind.

 

When interacting with someone who is soothed by doll therapy, always ensure that you act as though the doll is a real baby.  Offer to hold the baby, and hold it correctly as you would a real child.  If someone is upset their therapy doll is not within sight, provide an explanation that would make sense if it were a real baby.

 

 

Saying “it doesn’t matter where the baby is—it’s just a doll!” can be quite upsetting. Instead, saying “oh, your baby is having a nap and the nurses are keeping an eye on her. Best to let the sleeping baby sleep.”  Your reassurance with an explanation that fits the scenario will provide more peace of mind.

 

Therapy dolls can meet someone’s need to nurture and care for others. It isn’t only women who have a need to nurture. Many elderly men with dementia do very well with a therapy doll as well.  One gentleman we met, Dyck, was rather despondent. He wasn’t interested in joining any of the activities in the long term care home he had just moved into. He was even trying to avoid some mealtimes. 

 

The introduction of a therapy doll completely changed his demeanour. He was proud of his new role and was keen to show off his baby to others. When staff and visitors would say: “Good morning Dyck, how is your baby today?” he would proudly respond “she slept through the night again!”  The tactile comfort of carrying the baby, joined with the sense of purpose and newfound caregiving role helped Dyck with his transition into long term care.

 

 

Doll therapy does not have universal appeal. Many people are not at all interested in carrying a doll; others are very well aware it is a doll and not a real baby; others still become so preoccupied with the doll that it can become problematic. Some people become concerned that the baby is sleeping all the time and they’re concerned when they cannot wake the doll. The inverse can happen too if the doll is designed to look like it’s awake—a concern that the doll never sleeps.  If someone is distressed in any way by the details, then doll therapy may not be ideal for them.

 

The next time you’re in a long term care home and you see someone carrying a baby doll, remember that it could be a therapy doll and you should treat it as though it’s a real child.  Ask the person holding the doll about their baby—you will likely see them perk right up and be very proud to tell you more.  While doll therapy certainly isn’t for everyone, it can be a great comfort and benefit to those seeing a nurturing role.

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Springing Forward!

 

It’s almost that time of year again—time to change the clocks!

 

The springtime change has a hopeful element to it; the days get longer and you have more daylight to enjoy in the evening hours.  It almost feels like you can measure the increased daylight every day!  It signals that spring is truly on its way.

 

There is one big challenge first though.  That’s the loss of one hour!  For most of us, that means the loss of an hour of sleep.

 

 

It would seem as though losing one hour of sleep shouldn’t be that detrimental. Surely we can handle one less hour of sleep.  And yet, statistics indicate that losing one hour of sleep does impact us, and not for the better.   It’s a well-known fact that there is a higher incident rate of automobile collisions on the Monday following the spring time change. Some studies have indicated an increased risk of heart attack too!  

 

If losing one hour of sleep can cause us to drive poorly and increase our risk of heart attack, what does it do for someone with dementia who may not understand what is happening with the time change?

 

Adjusting to the time change is essentially like dealing with jet lag. While it is only a one hour difference, it is enough to throw us out of whack for a few days as we slowly adjust. Our bodies are finely tuned mechanisms that follow a very careful circadian rhythm.  When that rhythm is interrupted, it takes us a while to get back on track.  If that much adjustment is needed for those of us who can cognitively understand the time change, how much more difficult is it for someone with dementia who cannot tell time?

 

 

Someone with advanced dementia may not be able to tell time anymore. Some days, it may seem as if they don’t have much routine if they are waking at odd hours and sleeping during the day. But even if their routine has shifted from what it was years ago, they still have an internal sense of the passing of time. Suddenly missing an hour throws off that internal sense, and it can feel disorienting and confusing.

 

Sleep is critical for brain functioning in all people, and especially so for those with dementia.  The brain needs a chance to recover and it is during sleep that memory is encoded. When someone’s brain is impacted by a disease that impairs memory, they may require extra sleep to encode even minimal memory.  Sleep is essential, and losing an hour of sleep can have an enormous impact on how someone functions. 

 

As much as possible, try to adjust bedtime and waking time in advance of the time change to make it a more gradual adjustment rather than a one-hour change overnight.  On the eve of the time change and the subsequent nights, ensure that your loved one still receives their usual allotment of sleep, even if it means going to bed a bit earlier or getting up a bit later.

 

 

When caring for someone with moderate or advanced dementia, just knowing what to expect can make a difference.  Recognize that the time change is just like dealing with jet-lag and it will be an adjustment for your loved one. Expect that they may exhibit some unusual behaviour or feel agitated and anxious the week following the time change.

 

Prepare as much as possible by making the adjustment gradual. And remember, these adjustments will be helpful not only for your loved one but also for you!

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Living in the Moment

 

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. People spend excessive amounts of money to attend yoga and mindfulness retreats where they aim to be entirely present in the moment without regretting the past or worrying about the future. While these retreats may have their place, there’s another way to learn how to be present directly from a zen master.

 

 

Spend the afternoon with someone who has dementia.​ That’s right. That’s all there is to it.  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 in 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, in the 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 is 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 in 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 in 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 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.

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The Art of Disguising Exercise for Seniors

 

At what age is exercise no longer important?

 

That’s a trick question—there is no age when exercise isn’t important.  Just because someone is elderly doesn’t mean they’re exempt from exercise!

 

 

It does mean the exercise needs to be modified to match ability level and possible injuries or conditions such as arthritis.  What qualifies as exercise also shifts as someone ages.  When someone is young, it may take a jog or run to get their heart rate up, whereas an elderly senior may increase their heartrate just by walking. The important thing is to increase the heart rate and to get the blood and oxygen flowing.

 

Sadly, many seniors lead highly sedentary lives.  All too often, the lazy boy recliner becomes the centre of seniors’ worlds. They settle into the recliner first thing in the morning and watch television for a significant part of the day. They nap in the chair…they may even sleep in the chair all night as a surprising number of seniors tend to do.

 

The most activity they get is a few steps to the washroom and back.  Even then, I’ve met many seniors who intentionally limit their fluid intake to reduce the number of washroom trips required!  Going to the washroom may be the only activity they’re getting, and even then they’re limiting that.

 

 

A senior who has become accustomed to such a sedentary lifestyle will need to reintroduce activity gradually. Compared to their currently sedentary day, it does not take much effort to suddenly double activity levels! Simply getting up and out of their chair becomes a form of activity that cannot be taken for granted.

 

If you’re visiting someone who tends to be overly sedentary, encourage as much movement and activity as possible.

 

As a precaution, you might avoid suggesting “exercise”.  Calling it “exercise” may be a barrier to some elderly people. If they don’t have the same context as you do for prioritizing fitness and exercise, they may not be inclined to want to “exercise”.

 

Instead, integrate basic activity into your visit.  Suggest sitting at the kitchen table together for a bit. Ask them to show you around. Step outside into the backyard.  While it may not qualify as exercise for you, it is most definitely an increase in activity for them. Be mindful to not push too hard too quickly, but continually suggest more and more activity—and increasing lengths of time out of the lazy boy chair.

 

 

When you’re in the kitchen together, ask them to reach items out of the cupboard. Bending, stretching, reaching are all basic movements that are necessary to maintaining a range of motion.  Ask for help folding laundry and putting it away.  The “excuses” you use to call your loved one into another room, or get them up and out of their chair are only limited by your imagination.

 

Before you know it, you might start getting a little devious in the creative ways you encourage more activity during your visit. The better you can disguise the increased activity as anything other than exercise, the more successful you’ll be!

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What's a Quiet Room?

 

Are you hosting any holiday gatherings where you have invited elderly relatives who have health conditions? You have probably already thought about accessibility accommodations such as helping them into your home and ensuring they have access to a bathroom. Those elements are very important and should not be overlooked.

 

 

Another element that should not be overlooked is how to make the overall

environment more manageable for your elderly loved ones, especially when there are health conditions to consider.

 

  • If someone has a chronic illness such as CHF or COPD, they may fatigue very quickly and need an opportunity to rest. 
  • If someone has edema in their feet or legs (swelling) they may need a chance to sit with their legs elevated. 
  • A stroke survivor may find the environment overstimulating and may need relief.
  • Someone with dementia may need some peace and quiet and a break from the noisy environment. 
  • Hearing aids may blur the sounds into a din so that individual voices are difficult to discern, and someone with hearing loss may need an auditory break.

 

To help facilitate these needs and more, you can create a Quiet Zone for your holiday gathering.

 

Part of the beauty of a Quiet Zone is that it can meet the needs of so many different health conditions. It is one solution that actually meets numerous needs simultaneously. It may even be appealing to younger family members too!

 

A Quiet Zone is a space dedicated to quieter interaction and less stimulation.  Ideally, the Quiet Zone would be a separate room, but if that’s not possible, then a nook or area that can be allocated as the Quiet Zone.

 

The Quiet Zone should be less stimulating than the environment of the main event.  If there are Christmas carols blasting on repeat in the dining room, the Quiet Zone does not have any music. If the Christmas tree in the living room has blinking lights and a miniature train set zooming past, the Quiet Room has steady, ambient lighting that isn’t distracting.

 

While the main event likely includes loud chatter, many people speaking at once, laughing, and loud voices to be heard over the din, the Quiet Zone is where people can have one-on-one conversations that can be more easily heard and understood.  For relatives of any age, the chance to step away from the noise and engage in a more in-depth one-on-one conversation might be a welcome relief. 

 

 

Someone who tires easily in a crowded room of people might appreciate the relief of settling into the Quiet Room.  Other guests can then take turns, one at a time, visiting within the Quiet Room.  This way, everyone is supported to be part of the family gathering, but they can participate in a way that matches their individual needs.  Having a space to retreat may allow people to reserve their physical and mental energy to join the group for dinner. 

 

The Quiet Room makes it possible to have a quick cat-nap if needed.  Giving the brain an extra boost of sleep can make the difference between enjoying the rest of the event, and just feeling overwhelmed and overstimulated. Family members who are stroke survivors or who have dementia will particularly appreciate the opportunity to have a power nap. 

 

 

When the brain has been impacted by stroke or dementia, part of the brain may not be working the way it once did. The remaining parts of the brain are functioning on overdrive to compensate for the losses. Those over-active brain areas tire easily and benefit enormously from rest. A Quiet Room creates the space and permission to invite such guests to rest their brains when they need it most.

 

This holiday season, consider creating a Quiet Room for large family gatherings.  The Quiet Room will be a retreat space to ensure that all your guests find the event manageable and can enjoy it fully.
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Boredom is the Cause of Behaviours

 

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?

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5 Situations When Family Caregiving does NOT Work

 

Family caregiving is an honourable endeavour and can be intensely meaningful and fulfilling.  But not all families are the same, and there are some 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.  If there are tensions or divisions within a family, the added stress of family caregiving can cause a further divide.  It is wise to step back and consider the whole family and the dynamics at play within your own personal family before attempting to take on family caregiving.  

 

Here is a Top 5 list of situations when family caregiving may cause more strife than benefit.

 

1. Sibling Rivalry was Never Outgrown

 

Do you still squabble with your siblings as much as you did when you were children? No one can get your blood boiling as quickly as a sibling who can reignite decades of rivalry in one snide comment! If this is the dynamic you have with your siblings, then family caregiving will be a particular challenge.

 

 

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.

 

 

Some families are surprised to learn that their elderly fathers often have the same high threshold for privacy. People aren’t surprised to hear that an elderly mother does not prefer to be bathed by her sons; not everyone is aware that the inverse—a daughter bathing her father—is equally as uncomfortable in some families. 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. For many elders, they feel that they are losing their last shred of dignity and decency if their adult children begin assisting with personal care such as bathing, toileting, or incontinence.

 

Family caregiving may be best provided in realms other than personal care in an effort to protect the privacy and dignity of elderly loved ones. Families can express their love and devotion and willingness to assist in a myriad of other caregiving capacities while leaving personal care to a professional.

 

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.

 

 

In this case, the family are not in the best position to be caregivers. They are not as likely to be able to provide exceptional care because they are distracted by personal issues. 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—someone with whom he does not have a long-established pattern of orneriness.

 

It may not even be something as notable as decades of family patterning. 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. This way, when she does visit, the daughter will be able to relax and match her father’s pace because she won’t feel burdened by an overwhelming to-do list. The differences in their styles and personalities can be eased by a professional caregiver, rather than being exacerbated by family caregiving and creating family tensions where none need to exist.

 

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. Maybe you’re a numbers gal and you can ensure bills are paid and finances are up to date. Maybe you’re a handyman and you can take care of the house and property for your loved one. Those are important contributions.

 

But 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.

 

 

Often people are thrust into a position of family caregiving; it’s not something for which they volunteered. It certainly isn’t something for which they’ve trained or been educated. Circumstance just places them in the role of “primary caregiver” and it’s a far bigger responsibility than they expected.

 

Elderly husbands are often the most stark examples. After being married for 60 years, the woman of the house develops Parkinson’s. The household had been her domain; work outside the home was her husband’s domain. They’re now retired and she is unable to do many of the tasks associated with maintaining a household. Her husband is inept with household tasks; in his 78 years, he has never been the primary cook or housekeeper. He’s at a complete loss. He doesn’t have the aptitude or the skill set to be a great caregiver. If left to muddle through on his own, it will be his wife who bears the brunt of it. His wife deserves professional care that will attend to all her needs and provide her with coping strategies for Parkinson’s. The couple deserves to maintain the lifestyle they have always known.

 

If someone is just not cut out to be a caregiver, it is wise to let them contribute in ways that suit their abilities while enlisting other caregiving support so that the person who needs assistance is not disadvantaged.

 

5. You don’t live locally or you travel frequently

 

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. Even keeping track of appointments has become overwhelming lately; having someone to help keep track of scheduling and appointments would be a welcome relief.

 

 

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.  The elderly loved one who requires care should remain at the centre of all decision making, rather than being distracted by the challenges that these 5 situations present. 

 

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!
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