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!
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 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.
It’s no secret that the holiday season has become increasingly stressful this year for several reasons. In the midst of all the wild events happening in our world, there's still this pressure to orchestrate a picture-perfect holiday dinner. As we all scroll on Pinterest boards for inspiration, we adding more tasks to our to-do lists for the perfect Instagram worthy Christmas party.
While some people may enjoy making detailed desserts that look like a Martha Stewart display or the hours of Christmas shopping, many others find it stressful. According to the mental health charity called, Mind, at least 1 in 10 people struggle to cope with the pressure of having the "perfect Christmas."
I am sure if you ask your grandparents what Christmas used to be like, I’ll bet they would tell you a different story. If they were of the generation that lived through the depression era, you can be certain that there was very little—if any—Christmas shopping to be done.
Let's take a pause, a breath and reflect on what matters the most. This holiday season doesn't have to be stressful, you can change that by adopting these three tips inspired by our elders.
1. Focus was on being together with loved ones and participating in activities together.
Rather than rushing around trying to have everything in perfect order, focus on doing fun things together as a family. You can play board games, share funny stories around the dining room table, bake homemade goods together, watch funny and heartfelt Christmas movies, and so on. If you can't be with your family physically this year, you can always connect online.
2. Simplicity is key
Decorations were much simpler years ago! Popcorn was strung and used as a garland hung outside for the birds to enjoy. Fruit featured prominently in décor—orange peels were used creatively as little baskets, or peels were dried and cut into shapes. These simple traditions are low-cost and allow everyone to focus on quality time together, rather than stressing about fancy décor.
3. Take a breath and slow down
Perhaps this year you can slow down the pace of the holiday season by practicing the art of saying no. You don't have to do it all, you don't have to host a family dinner again, and most of all it doesn't have to be picture perfect. Be present, slow down, and enjoy the everyday moments. Enjoy your fresh cup of coffee an extra five minutes, read your favourite book in the evening snuggled in a warm blanket, cuddle your furry friend, or whatever helps you to slow down from the holiday rush.
What I've learned from our clients is that there's something special about holiday traditions. Maybe it's time to slow down and revert to some time-honoured traditions from your grandparents’ era.
Just wanted to thank you for bringing joy to us seniors especially this past year when like you said so much has changed. We all still have so much to be thankful for and choose to be happy because of it. A very happy wish for you to have a joyful Christmas. We have time to do things like reading a book, take in a few movies.......zoom with friends and family, etc. how about writing a book !! I have always wanted to do that.....Maybe ????
Do you know a senior who has suffered a serious fall? Likely you do, since approximately 30% of seniors who live in the community suffer a fall each year. The consequences of a fall can be quite serious—injury, hospitalization, even death from complications.
Did you know that falls are the cause of 90% of all hip fractures, 50% of all injury-relatedhospitalizations in seniors, and the 5th leading cause of death in the elderly?! These numbers also double when a senior has dementia. So, it is extremely vital in keeping seniors strong and steady on their feet.
Why do seniors fall in the first place?
“Falling isn’t as much about slips and trips. It’s about the failure to recover. Slips and trips happen at all ages” (Dr. George Fernie). There are various external factors at play that contribute to slips and trips; such as:
Poor footwear (e.g. slippers)
While some falls can be attributed to tripping—such as tripping over floor mats, pets or curbs—other falls seem mysterious. The person will report that they just went down and we're not sure why. In many of those mysterious cases, the fall is due to internal factors such as:
Visual and hearing deficits
Neuropathy (abnormal sensory feedback)
Low blood pressure
Pain and foot drop
Weakness and tightness
Slowed reflexes and balance disorder
What can we do to prevent falls?
Get rid of all the external factors that cause slips and trips! Ensure that your living space has no loose carpets or rugs, the lighting is bright for increased visibility, all chairs are sturdy with armrests, everything needed is on the main floor (no stairs), and that proper footwear is worn in the house.
Improve balance and stability!
“She says she wants to keep living in her home. We say it starts by keeping her on her feet” (American Academy of Orthopedic Surgeons). The number one key to fall prevention is staying active!Physical activity has shown to mitigate the deathly consequences of falls – just walking, gardening or housework is enough for an elderly loved one.
However, when your elderly loved one refuses to do regular exercise the best option is to increase their base of support.
To remain balanced, there must be a stable base of support—the wider the base of support the more stable it becomes. The base of support is the invisible box that can be drawn around your feet when you are standing. Added to this is our centre of mass—which is approximately where our belly button is located.
When someone’s centre of mass is in the middle of their base of support, they are perfectly balanced. When their centre of mass begins to reach the outer edge of their base of support, they are more prone to falling.
For example, a ballerina narrows her base of support to be only one square inch when she is en pointe. Her balance is quite precarious because her base of support has been reduced. The only way that she remains upright is by perfectly hovering her centre of mass over her base of support. She is constantly adjusting to ensure that her centre of mass doesn't sway too far aware from her base of support.
In contrast, a football player crouches low and spreads his feet wide so that he has a wider base of support than he normally would. He may even put one hand to the ground adding a third point of contact and expanding his base of support further. He has a stable base of support, and his centre of mass is positioned in the middle of his base.
In the case of a frail senior, their feet may ache or have bunions, causing that person to only walk on the edges of their feet, which reduces their base of support and their balance. Instead of using the full surface of their foot, they have reduced their base of support more like a ballerina. As well, the senior’s posture may be more forward-leaning, pushing the centre of mass to the outer edge of the base of support, causing instability. A senior will not likely be crouching down to touch the ground for support, the way a football player does.
The best way to create a strong base of support is to use a walker. The four wheels of the walker expand someone’s base and provide the necessary support. Much like a football player, a well-balanced senior using a walker is less likely to fall than a senior who is precariously balancing on sore feet. If their posture is forward-leaning then the walker extends the base of support ensuring that the centre of mass remains in the middle of the base of support.
Encourage the seniors in your life to carefully assess their centre of mass and base of support to ensure that they are as safely balanced as possible. Every fall that is prevented is a great success and ensures a longer and healthier life for that senior.
You’re worried about your parents and you think they could use more help. You suggested home care, but they wouldn’t hear of it. They told you: “we’ve managed just fine on our own this long, we don’t need any help.” What they're really saying is that they don't want to face change. That's because change is scary.
Change is scary for all of us, at some level. Each person has a different tolerance for change, and it might take a lot more change to scare some people than others. But if you introduce a drastic enough change, eventually, any of us would feel trepidation about that change.
It’s little wonder then, that for seniors in their 80’s or 90’s, the thought of even a small change can be quite scary. After eight or nine decades, they are likely pretty set in their ways. They want things done a certain way; they want to keep their environment the same. As long as everything remains the same, it feels more manageable. It might help your parents to understand that home care is all about reducing the amount of change that your parents will experience.
Warm Embrace caregivers are trained to match each client's specific preferences.
Caregivers DO NOT barge into a client’s home and just take over. Caregivers DO wait to be invited in, and they ASK permission to proceed. They ask how that particular client prefers the laundry or housekeeping to be done. They cook from the client’s recipes or directions to match their particular tastes. They help to keep clients’ lives consistent.
Homecare is one of the best prevention strategies for one of the biggest possible life changes: admission to a long-term care home. Moving to long term care is a HUGE change—absolutely every single element of someone’s routine is changed. From the time they get out of bed, to when they eat, and whether they wear pyjamas to breakfast—everything is adjusted to match the schedule of the long-term care home.
Homecare ensures that individual clients maintain their own personal routine, they maintain their home, they maintain familiar comforts. Caregivers match clients, rather than clients matching caregivers. It reduces the amount of change they must experience.
Since home care is completely client-focused, each client calls the shots. The client decides what they’re doing each day and how they want things done and in which order. It is very empowering for seniors to get to make all the decisions that impact their own day-to-day living. Homecare grants this level of autonomy and independence.
Help your parents see that home care will ensure the least amount of change and help to maintain the lifestyle that they know and love.
You’re busy working from home watching the clock, mentally calculating whether you have enough time to check in on your mother, pick up some groceries, and cook dinner for your teenager. . . or will you be ordering pizza yet again tonight?
If this scene feels at all familiar to you, then you’re likely one of the 2 million Canadians who fit into the infamous “sandwich generation”. According to Statistics Canada, 28% of all caregivers in Canada are part of the sandwich generation. The sandwich generation generally applies to those in their late 30’s to early 60’s who are simultaneously caring for their ageing parents as well as their growing children.
Advances in healthcare are allowing people to live longer lives, though not necessarily healthier lives. The end of one’s life may include more intensive care, further demanding the time and energy of the sandwich generation who is caught between their parents and children. The increased life expectancy has led to another possibility—the club sandwich generation. The club sandwich refers to people who are assisting their ageing parents, while also being involved in their children’s, and grandchildren’s lives.
Four living generations is no longer a rare scenario.
It is now possible for families to have two generations who are both in their senior years at the same time! The club sandwich can also apply to someone who is in her 40’s who has teenagers at home, while also assisting her 68-year-old parents and her 92-year-old grandparents. A woman in this situation is caring for two senior generations simultaneously, while also raising her own family.
Add to this the pressures of working from home, parenting, homeschooling, marriage, personal life, and personal health—no wonder there is concern about the sandwich generation suffering burn-out! Often people feel that they should be able to manage all of the simultaneous caregiving because previous generations managed to do so. In reality, previous generations did not experience the sandwich generation phenomenon to the same degree, and they certainly did not experience club sandwich generations or a pandemic!
Recognizing the unique challenges faced by today’s sandwich generation - especially in such unique times, will help to alleviate guilt and replace the sense of “I should be able to do this” with “where can I find meaningful assistance?". Acknowledging that you cannot do it all alone and that you deserve assistance is the first step. There are services available to help so that you don't have to this all alone!
Caring for your own health and well-being is crucial!
Managing to eat healthy meals, and getting exercise needs to be a personal priority, not just something to do if you have time left over—because there is never time left over. If you are feeling completely stressed and burned out, you are not in the best condition to care for loved ones.
Instead, think about accepting homecare assistance so that you are able to lead a balanced lifestyle that cares for you too! Put support systems in place to assist you in caring for your parents and grandparents. A loving companion aide might be just the solution to support your parents while caring for your health at the same time.
With support systems set in place, you can avoid burn out, and enjoy your free time for some personal self-care or a well-needed vacation.
When asked “how much do you exercise?” the answer is invariably “not enough!” We know that we should exercise more, but do we know what the consequences are if we fail to exercise regularly?
Lack of physical activity is a risk factor for heart disease and stroke(as well as other many other illnesses such as diabetes and even dementia). It is a risk factor that we have control over, so we should reduce our risk!
How much exercise do we really need?
The official guidelines from the Canadian Society for Exercise Physiology recommend a minimum of 150 minutes per week of aerobic physical activity. That’s it! That’s an attainable goal—within reach, even for people who aren’t accustomed to exercise. Even 10-minute increments of activity count toward the total of 150 minutes.
Of course, 150 minutes doesn’t need to be a limit. More activity is even better. The guideline is a base limit for how much activity adults (middle age, baby boomers, seniors, and even the frail elderly) require each week.
Which activities count toward your 150 minutes?
The good news is that going to the gym is not your only option! Walking is a simple and easy heart-healthy activity and counts toward your minutes. Even household activities can count—vigorous cleaning, gardening and yard work all elevate your heart rate and get your blood pumping, and that’s the goal of physical activity!
I find it encouraging to measure exercise in terms of 150 minutes weekly because it allows for flexibility. In contrast, if you measure exercise as ’30 minutes most days of the week’, the focus is on 30-minute intervals, and missing a few days in a week can feel like an overall failure.
For the frail seniors who are utilizing our Triple Vitality program, they appreciate the flexibility in measuring total minutes over the course of a week. Ten-minute increments feel very accessible. Frail seniors can manage 10 minutes of light exercise! Thirty minutes may be out of reach when we first start, but 10-minute activity sessions throughout the day add up quickly!
Our clients are so encouraged by the progress that they experience. You can feel the benefits of exercise very quickly. Increased energy and stamina, renewed interest in activities, reduced stress, better sleeping and digestion, are all immediate benefits to exercise. Knowing that you are contributing to improved overall health and reducing your risk factors for heart disease, stroke, diabetes, and other illnesses only increases the incentive to continue being active!
Be sure to track your minutes of activity this week and see how close you are to the recommended minimum of 150 minutes. Remember that 10 minutes of activity at a time can count toward your total!
If you know someone who is elderly and they are unsure about how to become active, be sure to contact Warm Embrace. Our Triple Vitality program is specifically designed for the frail elderly who need assistance to become active. We love to make a healthy, proactive difference in people’s lives, regardless of age!
thank you for the email.. it has been quite some time since I received your emails. I found this exercise information interesting. I just started the wellness program for diabetics at the Y and am slowly getting more active again.
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.
When a loved one is diagnosed with a chronic illness or a degenerative disease, the diagnosis affects the whole family. It is easy to overlook the ways in which other family members are also impacted by chronic illness because the focus is upon the person who is unwell.
In the flurried rush of attempting to care for the person with the new diagnosis, families are often unaware that the emotional response they are experiencing is grief. People sometimes assume that grief only applies if there has been a death in the family, but people experience grief from many types of losses.
Grief is our human response to a loss. It is primarily an emotional response, but it can also have other dimensions too (physical, cognitive, social, spiritual, etc.). When a loved one is diagnosed with a serious illness, family members may grieve. For many family members, the grief is complicated by the fact that they are still in the throes of family caregiving, and they may be expected to remain “the strong one” for the sake of the family.
Grief is not a linear process that moves predictably through various stages. While there may be stages to grief, those stages are not sequential; there is no graduation from one step to the next. Each individual may experience various elements of grief at different times and remain with one stage for a long time, or they may move through various stages rapidly all within one day. There is no correct way to grieve, and there is no such thing as “failing at grief”. It is an individual journey and process for each person.
There can be triggers for grief, and those triggers are as individual as the grief process. A trigger could be something like hearing a favourite song that you once danced to with your spouse, and grieving that your spouse can no longer dance. A trigger might also be a daily routine that has suddenly become difficult, and grieving the loss of ability or independence that changes gradually.
For many families, there is grief over the loss of a role within the family. It might be the role of primary provider if employment is reduced; it might be the role of fix-it-man around the house and no longer being able to operate tools; it might be the role of coordinating family events and family members feel scattered and disconnected. The change of roles and responsibilities can be a difficult transition and grieving those changes is a normal—even healthy and expected—response.
Grieving is an action. It requires effort and work. The goal of grief is not “to get over it”. Unfortunately, many families feel that the message from friends and sometimes even health care professionals is that they should “get over it” or “get back to normal.” When a family member is coping with a chronic illness, returning to “normal” is no longer an option.
The previous version of normal doesn’t exist. Illness has redefined what normal will be like. The goal is to adjust to a new normal—adjusting to the illness as a new reality of life, and recognizing that this will alter many aspects of life. Once families have begun to adjust to their new normal, they can begin to see hope for a newly defined future.
Instead of looking for a reason that the illness is present within the family, seeking meaning can be a lot more helpful. Seeking meaning is looking for a silver lining—acknowledging that a difficult situation is the reality, but perhaps there can be some wonderful moments that are significant.
While this may seem like a subtle shift in mentality, it can result in vastly different feelings. Looking for reasons suggests that someone had to experience the illness in order to learn a certain lesson; looking for meaning is acknowledging that the illness has happened, and finding glimmers of hope will make the journey more meaningful.
How can you best support someone who may be grieving because of an unwell family member?
The most important thing you can do is to remain connected. Family caregivers constantly report that their closest friends and even other family members distance themselves because they don't know how to help, or they don’t want to impose.
One gentleman laments that while his wife was palliative, she had so few visitors. She felt the greatest relief from pain while a visitor was present, and her husband expressed this to friends and family, but few visitors came to the house because they did not want to impose. Visitors weren’t seen as an imposition, but as a welcome relief.
The greatest thing you can do is to ask how you can best be supportive, and then LISTEN! Truly listen.
Allow family members to tell you what they need and what they want. Most of all, they will appreciate a listening ear who acknowledges their challenges and validates their feelings and experiences. Pre-judging or assuming what someone is thinking/feeling is not helpful.
A woman remarked that the comment “but you look so well!” (or that her husband, for whom she cares, “looks so well”) to not be helpful. While it is intended as a compliment, it shuts down any conversation about how she is truly feeling. She would prefer that someone just ask her how she is feeling, and be open to a conversation.
To best support someone else, be a listening ear and don’t distance yourself. Remember that the person with the illness as well as the whole family is adjusting to a new sense of normal.
Be wary of judgmental statements such as “things happen for a reason”, and instead help others to see some of the meaningful moments that have touched you and might also touch them.
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.