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?
Your parents recently moved into a retirement home and you were relieved they’d now have three proper meals per day. With your mother’s progressing dementia, she hadn’t been cooking for quite some time.
There’s only one problem.
Your mom has been bringing her purse to the dining room where she stashes extra food! She takes it back to their room and hides the food and you’ve been finding it in various states of science-experiment decay!
What is happening?
In the past, this might have been called “hoarding”. But “hoarding” has a negative connotation and is quite different than what is happening for your mom. A more suitable term might be “collecting”.
Her new behaviour is not unusual and it makes sense when you consider what is happening in her brain.
The drive or instinct to gather is a hard-wired human instinct. Humans have been hunters and gatherers for millennia. We have the instinct to gather food beyond what we immediately need to prepare for future hunger.
In modern society, most of us are blessed enough that we don’t have to worry about our next meal. With 24/7 grocery stores, we have access to food at any time. But for your mother who has dementia, that option is not as viable.
First of all, she likely grew up in an era where stores were not open 24/7. Secondly, she may feel particularly vulnerable that she has no way of accessing food at any given time—she likely cannot drive, she likely wouldn’t know how to get to the closest grocery store, she might not even have access to money to purchase food. Her instinct to gather food that is available actually makes perfectly good sense. She is gathering food because she doesn’t know where her next meal is coming from.
“But wait!” you say. “She has three full meals daily with access to a coffee bar that has muffins and cookies and fruit—she’s never left hungry. Of course, she knows where her next meal is coming from!”
Your response is perfectly logical. Remember, though, that her brain’s ability to be logical is diminished. If she has dementia, she may not remember yesterday clearly enough to remember that she did, indeed, receive three full meals. She can’t use yesterday’s experience to reassure herself that she will likely receive three meals today.
From her perspective, she is suddenly in this new place that doesn’t yet feel familiar.
There is no kitchen that she can see. She doesn’t recall the delicious dinner she had last night. No wonder she is concerned about where her next meal is coming from! On top of all that, one of the deeper portions of her brain—the Amygdala—continues to send out hunger-gathering instincts for self-preservation.
Instead of considering her behaviour to be “hoarding” and problematic, understand that she is doing her best to provide for herself and meet her most basic human needs.
September is synonymous with back-to-school time. Long after you’ve graduated, it’s hard not to feel the appeal of the fresh new school year that starts each September. The back-to-school advertisements start (far too early!) in the summer and remind everyone—even those who are not students—that the new school year is fast approaching.
With all the anticipation over new school supplies, different classes, reconnecting with old friends and meeting new teachers, September is tinged with excitement.
For some people though, September comes with a whole new set of challenges. Those who are squeezed into the sandwich generation can feel the extra pressure that the school year brings.
The sandwich generation includes those who are caught between caring for their children, while simultaneously providing care to their ageing parents. Those feeling the crunch in September are likely even members of the club-sandwich generation: mothers who have young children at home who are providing help to their parents and their grandparents at the same time.
Club sandwich members are lucky enough to be in families who have four living generations at the same time. Their young children are the youngest generation, the hectic mother is the second youngest. The grandmother may be in her 60’s or 70’s and the great-grandmother in her 80’s or 90’s.
The young mother is caught between raising her young children, getting them out the door on the first day of school and being there for them when they step off the bus at the end of the day and also helping her mother to care for the elderly great-grandmother whose needs have suddenly increased.
September may represent a time of excitement and fresh beginnings for many people, but for this sandwich generation young mother, it may mean increased stress and an even more hectic schedule as she’s attempting to ferry children to after school activities, help with homework, and also deliver meals to her nanna across town.
Those in the throes of the club sandwich generation need support to manage the needs of so many generations at once. The help can take many different forms—extended family and friends, a nanny for childcare, a driver to chauffer children to all their activities, or a caregiver to support great-grandmother Nanna.
A professional caregiver can provide the support that Nanna needs, while also alleviating pressure off the young mother who is hoping to get her children’s school year off to a good start. September can be a time of exciting new beginnings for Nanna too! She can look forward to meeting friendly caregivers who will become new friends.
Who in your family or circle of friends might benefit from the back-to-school excitement of September by engaging the support of a professional caregiver?
Family caregiving is an immense responsibility at the best of times. When a health crisis occurs, a family can feel that they’re in over their heads. Families need caregiving support during crisis more than ever.
At one time, it felt manageable to assist your mother in remaining in her own home. Sure, some weeks were a little more hectic than others, but on the whole, you were managing. Then she fell.
You’re not too sure how long she was on the floor before you discovered her; she was pretty disoriented and doesn’t recall the circumstances surrounding her fall. She was rushed to the hospital and you’ve been visiting her daily. She’s still quite confused and you’re not sure she’d eat anything at mealtime in the hospital without you there to unpackage the food and insist on every bite.
It was fine for the first few days, but your mother isn’t doing as well as you’d hoped and it’s evident she won’t be discharged any time soon. The daily visiting routine you started just isn’t sustainable—especially if your mother goes to Freeport for rehab as the discharge planners are now talking about.
Visiting daily in the hospital is certainly not sustainable long term, and even more overwhelming is the question of how much assistance your mother will need when she does return home, whenever that might be.
Warm Embrace caregivers serve clients wherever they need us most, including in the hospital. Our caregivers can provide daily visits that cover meal times to ensure your mother eats her meals. Between meals we’ll visit with her, enjoying conversation and keeping her mind active and engaged.
If her next move is to Freeport, our Caregivers can continue visiting her there while she recovers. Best of all, when it comes time for discharge, you won’t have to panic. You’ll already have the care in place and ready to go.
The caregivers who have already met your mother and grown to love her can now help her to transition home. The crisis situation of a fall and a fractured hip is much less stressful when you have reliable care that will help you through each stage of the journey.
Instead of feeling like you’re in over your head, you can feel relaxed and at ease knowing that experienced professionals have everything under control.
When you think of family caregiving which words come to mind?
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 enjoy dinner out, or attend a rock concert, or read a book, or travel. 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 one. 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 burn out. 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 is 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.
Inclusion is a hot topic and a very important one for our elderly population. It emphasizes the importance of inviting the active participation of all citizens, including our elderly population, into our social fabric.
The Canadian Network for the Prevention of Elder Abuse (CNPEA) has reported that:
Being socially isolated is a common affliction among older adults. More than 30% of Canadian seniors are at risk of becoming socially isolated.
Isolation and loneliness are as bad for your health as smoking 15 cigarettes a day.
And, social isolation can put seniors at increased risk for elder abuse.
Inviting the elderly population into social spaces is the first step, the second next step is creating an age-friendly community.
What exactly is an age-friendly community?
Being age-friendly means that there are no barriers to accessing services in the community, regardless of age or ability. A city that is designed to include and be accessible for its elderly residents is automatically factoring in the needs of its younger population.
For example, if a community is accessible for someone using a walker or wheelchair, it is also accessible to a parent pushing a stroller. The examples that we think of quickly are usually about physical accommodation such as ramps, wider doorways, longer crosswalk signals, etc. These accessibility features are certainly important, but a truly age-friendly community is about far more than just physical accessibility.
Dr. John Lewis, professor at the University of Waterloo, points out that currently, one-quarter of Waterloo Region’s population is age 55 plus. That number is only going to increase in the next few decades. It is not acceptable that there are ageist prejudices towards 1/4 of our population! If we want to have a community that is inclusive to all members, it needs to be designed to suit those who are age 55 and older.
Age-friendly communities are about inclusion and a sense of belonging. It is about receiving the respect and dignity that all citizens deserve, regardless of ability or age.
Often, these issues relate directly to coping with ageism. Ageism is the stereotyping of and prejudices against someone because of their age. It might include automatically treating someone in a certain way, just because they appear to be a senior.
For example, assuming someone is hard of hearing because they have gray hair is an ageist stereotype. Another example is the way that professionals often speak about a senior to their family members, as though the senior is not even in the room! The conversation should be directed to the relevant person, regardless of age.
In addition to physical challenges, some people experience cognitive changes. These people deserve the same level of respect and inclusion as all other members of society. Brenda Hounam, dementia advocate and spokesperson, highly advises communicating about dementia itself. Rather than hiding her challenges with dementia, she has decided to be very public and make others aware of her disease.
Hounam suggests that people “open the doors for communication—just ask”. She feels that it is much better to ask for clarification and to communicate clearly with someone who has dementia; do not just make assumptions. She asks that people do more than just listen; she wants people to truly hear and validate what she is saying. Hounam’s overarching message is that “we are all unique, and we all have something to contribute until the last breath.”
Being inclusive and respectful of all citizens—regardless of age, ability, or illness—better allows us to fully acknowledge and appreciate the contributions of all members of society.
Don’t be discouraged and let the cabin fever get to you—instead, speed up spring!
One of the best ways to bring spring to you is to start your gardening early—indoors! Rather than waiting on mother nature to cooperate for a display of spring colours, get things started yourself by forcing bulbs.
Indoor gardening is a very accessible way to garden. There is no need to bend over or kneel on the hard ground. Bulbs require very little maintenance or effort. Indoor gardening is a great way to connect with an elderly loved one’s passion and hobby without being overwhelming or too physically demanding. It can also be a great intergenerational activity, drawing children and grandparents—or even great grandparents—together over a common task.
Forcing bulbs indoors mimic the outdoor environment that causes a bulb to grow and bloom. Unlike large, potted house plants, bulbs do not need big pots. A small, shallow dish is sufficient. Many bulbs are easily forced using only water and pebbles, rather than soil, resulting in much easier clean up when gardening indoors. It is also more fun to watch the roots develop and see the bulb change as it grows. New growth development is exciting to see—at any age!
Using your shallow container, fill it half full of pebbles or marbles, then place the bulbs on top of the pebble layer. Gently fill the rest of the container with pebbles or marbles to secure the bulbs in place, but do not completely bury the bulbs. Put enough water in the dish so that the water touches the bottom of the bulb, but do not submerge the bulb in water or it will begin to rot.
The step that is most often overlooked when forcing bulbs is the chilling step. Your freshly “planted” bulbs need to be chilled in a cellar or in the fridge to mimic the winter season. Some bulbs only need a few days of chilling, and others need a much more extended chilling period of several weeks. Be sure to check the specifications on the bulbs that you purchase.
NOTE: Please do NOT store bulbs in an elderly person’s fridge. If that person has dementia or mild cognitive impairment, the bulbs (or pebbles) could be mistaken for other produce. Likewise, if your loved one has impaired vision, the bulbs could appear similar to onions. Senses such as taste and smell become dulled for many people as they age; the smell or bitter taste that might alert you to food being harmful may not alert an elderly loved one.
When roots begin to show you will know that your bulbs are ready to begin their growth cycle and it is time to remove them from the chilling stage. With roots now showing, your bulbs are ready to be moved into warmth and sunlight. You need to introduce them to sunlight slowly, just the way that the spring sunlight is soft at first and then gradually gets warmer. Place your bulbs in a cooler area of your home, away from direct sunlight. When your plants begin to grow and the stems take on a healthy green colour, then it is time to move them to a sunny windowsill to watch the beauty unfold!
In theory, any bulb can be forced to grow indoors, but some varieties are easier to force than others. Paperwhite narcissus grows well indoors and does not require a very long chilling period. They grow well in water and pebbles and are quite fragrant. Amaryllis are very easy to force and the blooms are giant and colourful. They grow so quickly that you can see growth daily.
The warmer the environment, the faster the amaryllis will grow. Once it blooms, it is best to move the plant to a cooler, shaded area for the blooms to last longer, as they can remain for up to a month.
Hyacinth and crocus can also be forced and take eight to ten weeks to grow. Although tulips are a favourite spring bloom, they are probably best enjoyed out in the garden as they can be trickier to force and require a long chilling period of sixteen weeks.
Enjoy your head start on spring by forcing your favourite bulbs indoors, and use this easy, timeless, and ageless activity to connect various members of your family. You will have spring beauty unfolding in your own living room—no matter how much snow remains on the ground outside!
You want what is best for your parents, and you worry that they need additional help. Your parents believe that they’re managing just fine on their own.
So, Who decides?
First of all, you need to consider whether your parents are cognitively well and capable of making sound decisions. A “sound decision” is not necessarily a decision you agree with—two people of sound mind can arrive at different decisions!
Capacity to make decisions is based upon someone’s ability to understand the choices with which they are faced, and the consequences of their decisions. For example, as an adult with capacity, you are aware that your chance of winning the lottery is very limited, and yet you choose to spend your hard earned money on a lottery ticket. Someone could say that is an unwise decision because the consequences are not in your favour; however, you understand the risk involved and the likelihood that you will not win. The reason that minors are not permitted to gamble is that they do not fully understand the consequences of their decisions. As a capable adult, you are permitted to make decisions that others might judge to be unwise, but it is your prerogative to do so.
Your parents have the same right. If they have the capacity—meaning they understand their options, and they understand the risk associated with those options—they are entitled to make decisions.
My parents won’t face reality — they won’t decide anything!
While it might appear that your parents aren’t planning because they aren’t changing anything, they might just be sticking with the status quo because they aren’t aware of all possible options. You feel that your parents require more help—have you suggested various sources or types of assistance?
It is possible that your parents view the decision as a dichotomy—living at home and “getting by” as they always have, versus complete institutionalization in a nursing home. While these may be two possible options, there is a myriad of other options that fall somewhere in between!
Help educate your parents on some of the options for assistance that won’t feel like such extremes. If your parents are cognitively well, it is their right to choose the type of care that they feel will best meet their current needs. Engaging your parents in the research and ensuring that they feel in charge of their own decisions will ease the process. When your parents realize that you’re not just trying to force them out of their beloved home (as so many seniors fear!), they might be more open to alternate care options.
To start your research journey, you can learn about some homecare options that emphasize health and wellness.
You care deeply about each of your residents but sometimes it can be difficult to meet their varying needs simultaneously. It can be especially tough when a resident with dementia progresses, and other residents are perturbed by the new symptoms. Sometimes other residents inadvertently exclude or even ostracize residents with dementia, which only increase agitation and confusion.
Our caregivers can help remedy this situation!
One of our favourite client success stories was with Lydia, who lived in a Waterloo retirement home. Lydia was quite spry physically and she was keen to “assist” other residents. However, her advancing dementia impaired her judgement and her ability to assess the situation. In some cases, Lydia was moving walkers out of reach or rearranging chairs as others were about to sit down, placing others at serious risk of falling.
This presented a challenge for retirement home staff. Of course, the safety of all residents needs to be a top priority, and managing Lydia’s need to be active and assist is also important. The BSO team was brought in to help problem-solve the situation and they determined that the best non-pharmacological option would be attendant care. Since Warm Embrace offers extensive dementia training to our caregivers, our team is particularly well-suited to support residents whose dementia is advancing.
Warm Embrace caregivers were paired with Lydia and found her to be delightful! When redirected to positive and constructive activities, Lydia stopped interfering with other residents. Her need to feel helpful, involved and productive could be met in ways that protected the safety of other residents.
Within a week, the other upset residents had stopped complaining about interferences and they became contented residents again. The staff could return to their regular responsibilities since they no longer had to be completely preoccupied with just one resident. Lydia herself was so much more content and happy; all traces of agitation evaporated.
Attendant care made all the difference in this situation. Retirement home staff were pulled in many directions attempting to meet everyone’s needs at once. By providing one-on-one support to Lydia, everyone’s needs could be met simultaneously, which also relieved the strain and stress on staff.
Which resident in your home could use the same support?
Many of the couples who reside in your home have been with you for years. They downsized out of the large family home when the house maintenance became too much and they relished meals being prepared for them, but they were still healthy and active and ready to enjoy all your residence has to offer.
Over the years though, their health has declined. The hard part is when one person declines more rapidly and begins to need more care, but the couple desperately does not want to be separated. That’s exactly the case with Walter and Margaret.
Walter and Margaret have been married for 64 years, and in all those years, they’ve never spent a night apart. When they first moved into your residence six years ago, they joined every activity and club — they played bridge twice a week, Margaret sang in the choir and Walter joined the woodworking club.
Over the past year, they’ve pulled out of all their activities because Walter is struggling to participate. Now playing Bridge is too complicated to follow and he finds crowds overwhelming.
Margaret is a social butterfly who is missing her friends and her activities, but she doesn’t want to leave Walter alone in their room all day. If she leaves him for more than 10 minutes, he starts worrying and is terribly upset when she returns. You fear the day when Walter’s cognition might require a move to long term care and they could be separated.
Warm Embrace will support Walter and Margaret within your residence, allowing them to remain together in their preferred residence. A Warm Embrace caregiver will spend one-on-one time with Walter, engaging him in activities that he can manage by modifying everything to match his current ability level. Margaret will receive some much-needed respite and an opportunity to see her friends and rejoin her social groups.
Most importantly, Walter and Margaret will still be living together in your residence for their 65th wedding anniversary, maintaining their perfect track record of never spending a single night apart.