Bill was a dairy farmer and spent his entire life outside. He was up before sunrise milking cows before the birds had even started chirping. Every evening, he was out milking again. His entire life was set by the rhythm of farm life.
Bill now resides in your long term care home in your secure unit since he is adamant he needs to get outside and milk the cows. With his advanced dementia, he does not realize that he hasn’t milked the cows in nearly 25 years, but his circadian rhythm is indelibly marked by the farm rhythm and he’s bound and determined to get outside.
Of course, Bill is safe on your secure floor and he cannot leave. But as dusk arrives, Bill becomes increasingly agitated as he feels the need to be out on the farm, and his agitation is contagious. He paces the floor back and forth, he looks out each window longingly and he searches for the exit. Other residents can sense his unease and though they don’t know what he’s anxious about, they share the sentiment.
The approaching evening as the sun is setting can be a challenging enough time within long term care as many residents have competing needs at that time of day. Bill’s increasing agitation only compounds those needs.
What Bill really needs is a dedicated caregiver companion who can address his personal needs. A caregiver can take Bill on safe outings, fulfilling his desire to be outside. When evening approaches Bill’s caregiver can reassure him “not to worry, you milked the cows a little early today; everything is fine on the farm.”
His caregiver can keep Bill occupied so that he doesn’t start looking for something to do—his history dictates that if he had a moment of boredom, he cured it by heading out to the barn. Instead of letting Bill feel bored—and likely to want to exit seek—his dedicated caregiver can keep Bill engaged in conversation and activities until dinner time when he typically settles into a routine.
Of course, Bill receives the most direct positive impact from his caregiver, but the incredible part is that he is not the only recipient! Other residents also benefit when Bill is calm and redirected. The source of the anxiousness and agitation that spread contagiously is solved. By extension, staff benefit when residents are content and happy. Bill’s caregiver addresses his emotional need, which frees staff to care for other residents who may be in need.
When you have a resident who is intent on leaving the secure floor, remember that one of the most effective strategies may be a dedicated caregiver who can address emotional needs and redirect attention. The positive impact will have a ripple effect across the entire floor!
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.
If a picture is worth a thousand words, then what does the photo selection on our walls say about us? When you look around your home, what photos do you have prominently displayed?
Photos are one of the ways to personalize your living space, be reminded of your closest friends and family, or commemorate a favourite event. What if the photos on your wall no longer triggered happy memories? What if you didn’t recognize the people or places in the photos on your walls? How would you feel?
If you didn’t recognize any of the photos, you might feel like you’re out of place, that it can’t possibly be your home. You might feel disconnected, or perhaps even a little lost. You might wish to go home, to a place that’s familiar and recognizable.
That is exactly how someone with advanced dementia can feel. For some people with dementia, they will have a tough time recognizing photos of family members or even photos of themselves. In the early stages of dementia, it can be helpful to have recent photos of grandchildren available so they are more recognizable when they visit, especially because they grow up and change so quickly. But as someone’s dementia advances, keeping up with updated photos can be challenging.
For someone with advanced dementia, it can be quite abstract to look at a photo of a baby or a child and connect to that person as being your great-grandchild. Having recent photos of the latest great-grandchildren may not provide an anchor-point for identity. It may just be a nice photo of a cute baby, but no greater connection than that. In fact, I’ve had clients with advanced dementia tell me that the cute baby photo—which is indeed their newest great-grandchild—is just the sample photo that came with the picture frame and since they liked the photo, they never changed it out!
Photos of unrecognizable family members may be pretty photos, but if someone with advanced dementia does not realize it’s a family member, then the photo does not have much significance. It does not signal “you are home” or “you belong here”. It does not spark memories of happy times, it doesn’t connect to a sense of identity.
Instead, it can be helpful to understand what and who your loved one is thinking about most these days. Oftentimes, people with advanced dementia are thinking and talking about times that they can more clearly remember and understand. Since long-term memory is stronger, people often revert back to childhood or young adulthood memories. If that is the timeframe that is clearest, then provide photos to match the era that your loved one can remember.
If your loved one is talking about their parents, see if you can unearth an old photograph of their parents from decades ago—a photo of what their parents would have looked like when they were a child or teen. If your loved one is talking about their siblings, find old photos of the siblings together as children. You may have a recent photo from the latest family reunion, but if your father is remembering his brother as an 8-year-old child, he may not be connecting with the photo of the 87-year-old man who is his brother today.
Many elderly women have strong memories of having children. Their strongest memories are of their children as babies, toddlers or young children. Finding the old baby photos that might have adorned the walls over 60 years ago can be helpful. The photos will be familiar and will likely spark a smile and perhaps even some fond memories.
Another option, though much tougher to implement, is to adorn the walls with photos, pictures, or wall hangings that were in your loved one’s childhood home, or even their first home when they moved out. Of course, many of those photos and prints may be long gone, but if you can find anything stashed away in the attic, it may be worth bringing them out to see what reaction you get.
For someone with advanced dementia, adjust their environment to match their internal reality. Have photos to match their strongest memories. Select pieces that bring comfort or joy and spark a memory.
Whether modifying someone’s home or decorating their new living space in a retirement home or long term care centre, provide photos that spark a sense of pride and identity for your loved one.
Have you ever been to visit someone in long term care, and they told you to “get out!” of their room? Or perhaps you’ve been visiting someone and you’ve overheard another resident angrily throw someone out of their room.
It’s not uncommon, but visitors are often shocked by it.
Why is it that someone in long term care might yell “get out” to a visitor, a care provider, staff or another resident? To better understand the reaction, let’s step back a little and think about human nature on a larger scale.
As humans, we have an instinct to seek shelter and collect items we might need to keep us safe or fed in the future. Most of us have had the benefit of living in a home, apartment or condo throughout our lives, and we made that space into our own personal haven. Think about the layout of your home or apartment. Which rooms do you invite visitors into?
Likely, you have visitors in the living room and the kitchen, maybe the family room or den. For decades throughout your life, you entertain in these rooms. How many visitors do you invite into your bedroom? Likely, not very many!
Throughout your life, you have likely associated your bedroom with deeply personal and deeply vulnerable activities. Human beings are most vulnerable when we’re sleeping, and most of us associate bedrooms with sleeping. It may also be the room where you change your clothes, which is also a moment of vulnerability.
So for decades of your life, your bedroom has remained off-limits to all but the very closest people in your lives. No one entered your bedroom without express permission. You had an expectation of complete privacy, safety and security in your bedroom.
Now think back to that resident who has just moved into long term care. Possibly for the first time in her life, that woman now has only one small room to herself. That room is where she sleeps and where she changes. The only washroom she uses is within that one room. Her most vulnerable and intimate personal care all happens within that space.
A room that has been private and personal and by-invitation-only her entire life, now has strangers entering it. Care providers, staff, fellow residents seeking their own rooms, lost visitors—any of these people may enter her most intimate, private space without warning.
No wonder she might cry out! No wonder it might cause distress! For eighty years this woman has had an expectation of privacy in her bedroom and suddenly a stranger waltzes in her room. If this same woman has dementia, she may not remember that she has moved; she may not remember that the “intruder” is the same care worker who served her yesterday. It may continue to be an intrusion for quite some time.
What can you do?
Whenever you are visiting someone in long term care, be sure that you always ask permission to enter their room. Think about how you would feel if someone entered your bedroom unannounced; be sure you don’t cause that distress for someone with dementia.
Announce who you are and how you are connected to them, and then ask permission to join them in their room. Respect the fact that some residents prefer to socialize outside their room in the open common areas, and other residents prefer the privacy and comfort of their room. Ask the resident what he or she prefers, and remember how personal their room maybe for them.
Have you ever been in line at the checkout and the guy behind you is getting too close….awkwardly close? How do you react? What is your body language like? What is your facial expression?
I’ll bet your expression is a cross between curiosity and suspicion. Your eyes are watching carefully; you’re on high alert. Your body language is likely standoffish and you’re tense; you’re ready to react or even defend yourself if necessary.
Is that normal? Perhaps it’s a bit stronger than necessary for a checkout lineup, but your natural instinct is to protect yourself. You interpreted the intrusion of your personal space a possible threat, and you’re on high alert until the threat subsides.
This human instinct to protect yourself and your personal space is a normal human reaction, and it doesn’t disappear just because someone has dementia.
In fact, this instinct to protect oneself may become even stronger in the face of dementia.
This self-protection instinct comes from the amygdala, a small area deep within your brain. The amygdala continues to send out survival instincts even when other portions of the brain are affected by dementia.
The part of the brain that houses reason and logic—the prefrontal cortex—is often first affected by dementia. It is this part of the brain that allows you to think through a situation and respond appropriately.
When the guy at the grocery store gets too close, your amygdala sends out a threat alert, but your prefrontal cortex uses logic to asses and notices that the store is crowded. You then realize that the guy moved into your personal space because he was bumped from behind. There is no threat after all, and your prefrontal cortex sends a message to the Amygdala that all is safe and secure.
For someone who’s prefrontal cortex is affected by dementia, their ability to assess the situation for danger diminishes. Their amygdala is still sending out the danger warning, but they do not have the ability to use logic or reason to understand the situation and reduce their sense of risk.
Think back to your initial reaction to the guy in the checkout line—your facial reaction and body language were not friendly or welcoming, were they? That’s because you were feeling at risk for just a second. Now think about someone with dementia who may have a concerned or suspicious expression on their face or their body language is reactive. Perhaps they are feeling threatened and they are on high-alert.
That person with dementia may not be able to use logic or reason to reassure themselves that there is no threat. If someone is in their personal space, and they feel threatened, they will react exactly like you did—defensively. They will not be able to contextualize and say “oh, that person is wearing scrubs. It must be a doctor or a nurse who is in my personal space to treat me medically.”
They may not recognize a family member, friend, care provider, or fellow resident. If they don’t recognize the person who is entering their personal space, then that person may feel as strange as the guy in the checkout line. If so, the reaction—even to a family member or friend—will be the same defensive reaction as a stranger intruding on space.
What can you do?
When you’re interacting with someone who has dementia, be on the lookout for defensive body language. If you notice a defensive stance or a suspicious facial expression, recognize that the person with dementia may be feeling threatened or at risk and help them to feel reassured. Be kind, and help them to contextualize. Fill in the missing details that their brain may not be able to supply. Help them to recognize relationships or connections and do not enter their personal space until you are sure they welcome you.
A beloved family member with dementia may not recognize your face, but they will recognize how you make them feel. Focus on helping them to feel safe and reassured, and the defensive behaviour will melt away.
I get asked this question a lot. And the answer is yes, without a doubt, yes. It certainly is sad when a client passes away. We have many long-standing clients whom we have served for years. We have seen them through major life transformations, journeyed with them as their health and abilities fluctuate, and have been at their side in their final moments.
These are people for whom we have provided intimate personal care. These are people who entrusted us with even more than their physical needs; we are often their listening ear, the ones who reassure them when they voice fears or concerns, the ones who acknowledge and validate their current reality.
Our clients are more than clients. They are an extended family with whom we share deeply meaningful moments. So the answer is absolutely yes—when a client passes away it certainly does impact us.
The next question that usually follows is: “how do you keep doing it? If losing clients is tough, how do you not get depressed by it all?”
That is a tougher question to answer, but finding the answer to this question makes all the difference in the world. It is always important to step back and consider the impact that we have made in the client’s life and the lives of their family.
Impact in the Client’s Life
We had a long-term client who passed away just last week. Over ten months ago, she was deemed palliative and initially was told she may only have a few weeks left to live. She proved everyone wrong! Every day our fabulous caregivers arrived to spend quality time together, with hopes of drawing out her charming smile. Many have suggested that she lived for our daily visits; it is possible that the companionship of our team contributed to her surviving months longer than doctors predicted.
We impact our client’s lives each and every day. We arrive at each client visit with the viewpoint of: “how can I make today a better day for this client?” We have countless heartwarming moments that will make you laugh or cry—or both! We share these Heartfelt Moments so others can feel the joy and deep meaning that we experience. We aim to make every day special for clients—whether it’s our first visit with them, or it’s within their final days.
Impact in the Family’s Lives
Recently, we were asked to provide palliative care to a client who had stage four cancer that was rapidly progressing. Although we did not have years of history with this client, we quickly grew to love her too. It was her family’s wish that she remain in her apartment until the very end—they desperately did not want their mother to pass away in hospital. Our attendant care granted this family their final wish for their mother. She passed away in her own bed, at peace, with someone holding her hand.
We cannot doubt that the family was impacted. The family had peace of mind knowing that someone was with their mother around the clock at times that they could not be present. They knew she had the tender and loving care that she deserved. They were granted their wish to have their mother pass away in her own bed at home.
In moments when we are tempted to feel sad and depressed because clients have passed away, I stop to consider—what impact did we make? If we were brought in specifically to provide palliative care to someone in need, and we successfully enabled them to remain at home and experience the passing they had envisioned, what more could I ask? When I realize that without our care, the family’s wish and the client’s wishes might not have been granted, then I realize that it would be selfish of me NOT to provide the care and support that they request.
When I recognize that our clients received a higher quality of life for the final months or years of their life, I realize that it is all worth it. I am a better person for each of the clients I have met. They each leave a lasting touch. What a blessing that I get to meet so many incredible people who touch my life, and who have entrusted me with the great honour of impacting their lives too.
So is it tough to lose clients? Yes, it most certainly is. Is it depressing though? I would say no, it is not depressing. Instead, it is a blessing to have been invited into the client’s life at such an important time. I am honoured, I am blessed, and I am touched.
When families are seeking companionship for their loved ones—especially within retirement homes or long term care centres—some families are surprised that the minimum companionship visit is three hours. The reason we have minimums is to fulfill our mission and philosophy of care. Within the context of long term care, there is another element that is also crucial and that is providing your loved one with one-on-one undivided attention.
One-on-One Undivided Attention
One of the reasons that companionship services are so beneficial within long term care homes is your loved one receives one-on-one undivided attention. Of course, there are wonderful staff members in the long term care home who are providing various types of care and assistance, but their attention is not undivided. They are typically rushing off to attend to the next resident because there are so many people who are in need, all at the same time. Your loved one can feel this. They can feel the sense that someone is hurrying along, or watching the clock, or checking a pager or other device. While completely unintended, your loved one might not feel important at that moment.
Our companionship services are an antidote to the rushing around and unfocused attention they’re receiving. Our caregivers slow right down and sit with your loved one. They’ll exude a sense of peace and calm that says “I’m here for you, and I’m not rushing anywhere else.” Because they have the luxury of time (at least three hours), they are not watching the clock, they are not rushing off to attend to other residents. They are focused entirely on your loved one giving much-needed undivided attention for hours on end.
We have served many clients in long term care who are in the very late stages of dementia. In many cases, these clients have very little verbal communication left. Many would say that they are past being able to recognize faces, and certainly beyond knowing names.
We served one such lady at a long term care home in Kitchener. She was non-verbal and most of the time her head hung low. She rarely made eye contact and only groaned occasionally. When family enlisted our help, many others wondered why they even bothered having a caregiver visit. Others assumed this woman could not benefit from a companionship visit since she couldn’t converse.
We paired this woman with a caregiver who had a particular knack for connecting with people who are non-verbal. The caregiver spent hours with this woman, slowly getting to know her and understand her body language. She developed trust and rapport with this woman. Before long, the elderly woman was responding to the caregiver’s voice.
The woman could be sitting in her wheelchair, slumped over with her head drooping, but at the sound of the caregiver’s voice, she would suddenly open her eyes and lift her head. When the caregiver was within sight her eyes would sparkle. She knew that the caregiver was there to see her personally. That caregiver wasn’t there to help everyone; she wasn’t there to do activities with or entertain the whole crowd. She was there for the sole purpose of being with this particular woman, and the woman knew that and responded to that individual attention.
This woman—who many might have disregarded as being unresponsive or too progressed with dementia to bother providing companionship—clearly benefitted hugely. We’ll never know how much she comprehended the caregiver’s one-sided conversation, but we know that she comprehended the feelings elicited by the caregiver. The woman felt noticed and appreciated, she felt valued and she recognized that the caregiver was there for her alone.
That is why we provide companionship to clients regardless of their physical or mental diagnoses or conditions. Making that woman’s day, providing her with a sense of joy and moments of contentment and fulfilment are what it’s all about. Would you like to have the same for your loved one?
In the world of homecare, terms like ‘minimum’, ‘maximum’, and ‘eligibility’ frequently arise.
When arranging publicly-funded homecare through the LHIN, the first concern will be eligibility—is your loved one eligible for LHIN homecare? If they are, the next question will be “for how much homecare?” Publicly-funded homecare is all about eligibility and maximums—the maximum amount of service that can be provided based on eligibility.
Privatehomecare is exactly the opposite. There are no eligibility criteria, and there is no maximum amount of service. We gladly provide as much service as a client needs or wants. In fact, to ensure that clients truly are well-served, we have minimum service provisions rather than maximums.
Why do we have minimum service provisions?
Here at Warm Embrace Elder Care, we have service minimums as a way of ensuring that we always provide service in line with our philosophy of care. Here are a few important ways that minimum service provisions contribute to the fulfillment of our mission and our philosophy of care:
Our philosophy of care is about promoting abilities and never doing for a client what he or she can manage independently. It takes significantly longer to support someone in doing a task slowly, at their ability level, than having caregivers just rush through a task on a client’s behalf. What is best for the client though? If caregivers always just do the task because it’s faster, eventually, the client will lose the ability to manage that task independently. Promoting abilities—even though it may take much longer and requires more support—is better for clients, so we allow enough time to support independence and not just do tasks ourselves.
Part of dignified care is ensuring that we match each client’s individual pace. Being rushed through your daily routine, especially with something as intimate as personal care, can feel very dehumanizing. Our clients deserve the dignity of taking time and lingering over their personal routines and not being rushed by an artificial deadline imposed by a one-hour visit.
Companionship is an essential element of our service. Our clients and caregivers establish a special bond, and this bond is developed by sharing quality time together. If caregivers simply rush in the door hurrying to complete a specified task in less than an hour and rush back out the door, it is difficult for rapport to develop. Slowing down and getting to know each other as human beings first, before jumping into tasks or personal care, puts the focus where it should be—on the people first and not on the tasks alone.
When a caregiver is paired with your loved one, that caregiver is prepared to assist in numerous ways. Caregivers are able to help with numerous tasks in the time they are present—they might do some laundry, wash dishes, make dinner, help your loved one to shower and get dressed, and then run errands. The benefit of this model is that you don’t need a separate person for each task—you don’t need a driver who only does errands, and someone else who only assists with personal care, and someone else who only does laundry, etc. It’s a more comprehensive approach where all the different elements of daily life can be seamlessly woven together—the same as you weave numerous elements throughout your day. Because we’re aiming to assist with so many different elements of daily living it takes more than an hour or two to effectively assist with each.
Living and serving by our mission and our philosophy of care is what makes our service exceptional. Minimum service is the first step to abiding by our mission. Beyond the minimum, the sky is the limit! Clients don’t need to worry about exceeding the maximum or being capped at a certain level. Instead of feeling limited by caps, maximums or restraints, clients can know that we’ll be there to assist as needed.
You have a resident, Henry, who insists on “going home”. Henry is adamant that he is “getting out of here” and that you can’t stop him. As the afternoon progresses, he becomes increasingly agitated and more insistent. Henry’s agitation is contagious; other residents are upset that he is upset.
Of course, logic won’t be helpful at this point. Reminding Henry that this is his home and he has lived here for months now is not effective. In fact, the more you try to reason with him and explain that this is his home, the more upset he becomes and the more he wants to leave.
“Going home” is not about the location. It’s moreabout the feeling Henry is experiencing. Henry is trying to communicate how he feels. He wants to go home because home is a place that represents feeling safe and secure, feeling in charge, feeling productive and knowing what to do. He wants to “get out of here” because he isn’t feeling safe, in charge or productive. He’s not sure what to do, so he figures he should go home where everything will make more sense.
Answering Henry’s emotional plea with logical answers won’t work. Explaining how long he’s lived there or which city he’s in, or the fact that he chose this home when he toured with his son—none of these explanations will be helpful. Instead, he needs someone to address his emotional needs.
The challenging part is that it takes a lot of time, a lot of patience, and a lot of one-on-one focused attention to effectively help Henry. It may take more individual time than your staffing allows, and other residents may have more pressing needs. This is where Warm Embrace comes in. Our caregivers provide one-on-one support to help redirect Henry when he wants to go home.
Better yet, our caregivers proactively address Henry’s needs. Since we know that Henry is more likely to want to go home as the afternoon progresses, we schedule an afternoon visit that starts before he typically becomes agitated. We keep Henry engaged in activities and provide positive reinforcement that confirms for Henry that he’s in the right place and he belongs. When Henry is busy working on a puzzle with his caregiver, or he’s in the courtyard enjoying the sunshine, or he’s joining in the sing-a-long in a chapel, he is less likely to focus on going home.
One-on-one companionship meets Henry’s needs in a non-pharmacological way. We can help to reduce his agitation and no medication is required. Other residents are also relieved when Henry is content and not agitated. Your staff is then free to attend to the needs of all the other residents in their care, knowing that Henry is in good hands.
Which of your residents would benefit from the same support as Henry?
You’re always encouraged when your residents have visitors. It brightens their spirits and gives them something to look forward to.
You have a fairly new resident who moved in last month and her daughter has been visiting daily. Initially, you thought it was to help ease the transition, but after a month, the daily routine is still in place. You’ve noticed that the daughter is looking increasingly strained herself. While the mother certainly seems to appreciate the daily visits, it seems to be taking a toll on the daughter.
This daughter needs a Warm Embrace caregiver! She needs a reliable visitor who will befriend her mother and visit consistently on set days of the week. We certainly can’t replace family, but we can supplement family visits. Maintaining a daily visiting routine is not sustainable for most families, and this daughter could be relieved to know that a reliable caregiver will cover set days of the week.
We can protect the daughter from burnout by alleviating her before she hits a breaking point with an unsustainable routine. If she reaches the point of burnout, there’s a risk she will no longer be able to visit at all. If she stretches herself too thin, she may become susceptible to illness herself, catching every cold or flu that circulates. If she becomes contagiously ill, she won’t be able to visit and then her mother will be left with no visitor at all.
Our wonderful caregivers create balance. We can supplement family visits by coordinating to match each family’s routine and schedule. Perhaps the daughter would like to maintain visits three days a week; we can provide a caregiver to visit on the other four days of the week. When the daughter would like to go on holidays, we can provide additional visits to cover the days when she would usually have visited.
By recommending a Warm Embrace caregiver for this new resident, you are supporting this family when they need it most. Which residents—or family members—do you see who are most in need right now?