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.
Everyday communication is important for our elderly population, certainly more so during these isolating times. Bill Walsh from AARP said: “At this moment in time, we’re not just combating the coronavirus, but we’re combating fear and anxiety and social isolation as well. So, it’s important to stay in touch with your loved ones and let them know that they haven’t been cut off or somehow marginalized.”
A quick traditional phone call is always lovely but why not introduce unique devices or new apps to your loved one? Your loved one’s interest in technology might surprise you. A study completed in 2017, discovered that 70% of seniors are now online and from 2013 to 2016 tablet ownership in seniors doubled. I know when chatting with our clients, I am always surprised to find out how many of them use Facebook, Facetime, Apple apps, Furbo, etc.
There are unique ways you can virtually connect with your loved one! We have compiled a list of the four best ways to virtually connect.
1) Videocall your loved one
If your loved one has a WIFI connection, a smartphone and an email address, they’re already three steps ahead! There are several apps you can use to video call your loved one – Zoom, Skype, Facetime, Google Duo, WhatsApp – just to name a few. I recommend keeping the conversation at a maximum of three people. It increasingly becomes difficult to hear with additional people, especially if people are talking at the same time!
Traditional phone calls are wonderful and always appreciated but video calls are more interactive. In a video call, you can see your loved one’s facial expressions and body language. You can even get creative with video calls! On a call, you can virtually share a cup of tea, you could try puzzling together, or you could even start a craft together. It doesn’t have to be a traditional conversation it could be a time to engage your loved one in a fun activity.
2) Play an online game with your loved one
If your loved one doesn’t want to be on video but wants to interact virtually, you can introduce online games. There are apps where you can compete against your loved one, such as words with friends, chess, scrabble, billiards, etc. There’s an endless amount of options in the Apple store and in the Google Play store. You are bound to find a game that looks interesting and fun!
3) Watch a movie together
Who doesn’t love movies?! Pop some popcorn and watch a movie with your loved one. Netflix released a new feature called Netflix party for desktop computers. It allows you to synchronize video playback and adds a group chat between yourself and your loved one. This is a great tool for a fun family gathering! You can add the grandkids to the party as well, and it can become a weekly ritual.
If your loved one doesn’t have Netflix or a computer, you can always video call your loved one as you both watch the same TV channel or DVD. Another option is simply calling your loved one on the phone. Even though watching a movie is generally done quietly, it’s comforting knowing that you are with someone and sharing the moment with someone you love.
4) Visit a furry friend on Furbo
Furbo is a camera that’s designed for dogs. It’s a neat device that allows owners to check in on their pets remotely. There is also a microphone so dogs can even hear their owner’s voice commands.
We have a client – let’s call her Jeanie - who loves receiving visits from her daughter’s dog Buddy. When chatting with Jeanie, I was happy to discover that she’s been visiting her daughter’s dog virtually on Furbo. Through the app on her smartphone, she is able to talk to Buddy, see what trouble he is up to and throw him treats by clicking a button.
Throughout my conversation with Jeanie, I could sense how happy she was to have the chance to interact with Buddy. Even her regular caregiver mentioned how Jeanie brightens up after interacting with Buddy on Furbo. The moments she is interacting with Buddy not only make her laugh and smile but they also provide Jeanie comfort and peace.
It might take a few tries to get your loved one comfortable with technology but the time and patience to teach them is worth it. Your elderly loved one will thank you for giving them the opportunity to connect. During this difficult season, we might have to socially distant but we don’t have to socially isolate.
When you break down the format of everyday conversation, you might be surprised how much it tends to be an exchange of facts. We’re often using the old-fashioned newspaper reporter method of the W’s: who, what, where and when. Sometimes we also include the “why” and “how”, but often it’s just the first four W’s.
Conversation tends to report on who did what with whom, where they went and when. We depend on each other to convey those “facts” in an accurate way, and we equate that with telling the “truth”. Since we tend to consider “truth” as a value, we place a lot of importance on conveying facts accurately.
The reality is that any of us is only ever conveying our perspective, our experience of the world, our interpretation of events. You know the old saying….” if there are 10 eyewitnesses, there are 10 different accounts”. I might even argue that you’d get 11 or 12 different accounts with 10 eyewitnesses! We each have our own understanding of events or recollection of past events.
Oftentimes, a conversation that includes sharing past memories becomes an exercise of correcting each other’s recollections of the “facts” or telling the “truth”. When different narratives emerge, a lot of effort is spent trying to reconcile those different narratives, assuming only one can be correct; or that details of each need to be merged and one variation decided upon.
The focus on “facts” and telling the “truth” makes conversation very difficult for those with dementia.
Recalling the first 4 W’s is tough: who, what, where and when. When someone’s brain has been impacted by dementia, their ability to recall precise details is impaired. Short term memory no longer encodes details into long term memory. When someone attempts to retrieve the details a few hours or days later, the information is no longer there since it was not encoded into long term memory.
Long term memory that was established decades ago may remain as the strongest memory. Eventually, even long term memories are impacted by the progression of dementia. When those memories are affected, it will be the details and the “facts” of the memory that are first at risk. Someone will continue to remember the feeling associated with a memory, but they can’t necessarily recall who was present, or when it occurred, or where exactly it was. They’re more likely to remember the “why” or the “how” of the event because those elements are typically more connected with the feelings of an event.
When trying to recall a memory, and someone with dementia or Alzheimer’s has an impression of the “why” or “how” of an event, their brain may fill in the gaps on some of the missing “facts” of the story to help it make sense. Their brain may provide a missing “who” or supply the “when” of the story—and those details do not line up with your recollection of the event.
In fact, those supplied details may not line up with the version of the story that the person told yesterday. Each time they retell the story, their brain may have to supply a different missing detail.
Instead of focusing on the “facts” of the story, focus on the feelings.
Don’t worry about correcting the details that may have different from the last telling of the story.
Don’t contradict the details or get worried about the “accuracy” of the story.
Do listen to the “why” and the “how” of the story that starts to emerge.
Let your loved one explore their memory and remember that they are trying to put words to an emotional experience. The emotion of the memory may remain strong, but finding the words to express it can be difficult. If the details they supply keep being corrected by someone else, they may stop trying to articulate what they’re feeling.
Stop and consider: what is the purpose of this conversation?
If it is a nice conversation between you and a parent, then enjoy it for all it is worth! Savour the clear moments, find the emotion underneath the words, and use it as an opportunity to connect. Correcting “facts” will only inhibit the purpose of this conversation—which is to create a connection and convey love and caring.
If it is a conversation with your loved one’s family doctor, then the purpose of the conversation is different. Suddenly, the facts of a particular symptom are critical. In this case, having correct “facts” truly is the purpose of the conversation and being focused on precision is important.
When you consider the purpose of a conversation, you can remain focused on what matters most. If exchanging factually correct information isn’t the point of the conversation, then don’t worry about correcting facts!
If the purpose is to create enjoyment for your loved one, you can achieve that by supporting their feelings and their recollections. Focus on the feelings, not the facts and you’ll find conversations far more enjoyable!
When someone has advanced dementia, their ability to complete tasks may become impaired, but their desire to have an important role and care for others often remains strong. While they may require quite a bit of assistance themselves, they are keen to offer assistance in return.
Caring for others is a deeply rooted desire for many people that persists throughout the journey with dementia. Simply trying to tell someone “you’re retired and you don’t have to worry about anything!” often produces more agitation. Instead, figure out how to tap into that desire to help for even better results.
One option is to provide doll therapy.
Doll therapy allows someone with dementia to care for a doll as though it were a baby. For some people, this can be highly effective and meaningful since it connects with identify—someone’s identity as a parent or a caregiver.
In some cases, a regular doll is sufficient. In other cases, a true therapy doll is more effective. A therapy doll is designed to be as life-like as possible. The doll is weighted so it feels similar to holding an actual baby. Most are designed to look like a peacefully sleeping infant.
The ways that people interact with their own personal therapy doll can vary significantly. We served two different clients, Mildred and Betty who each resided in long term care and had a therapy doll, but their forms of interaction with their dolls differed. In each case, we let the client initiate the interaction with the doll and we matched their interaction.
Mildred treated her therapy doll as though it were a real child. She held the baby properly and laid it down to nap peacefully. In this case, we mimicked Mildred’s interactions and also treated the doll as though it were real. Often, Mildred wanted to put the baby’s needs above her own—she would decline to go to the dining room for dinner since the baby was sleeping and she didn’t want to disturb a sleeping baby. In this case, we offered to hold the baby during dinner so Mildred could eat. We went together with Mildred to the dining room and sat by her table, holding the doll where she could keep an eye on her baby during mealtime.
Betty had quite a different interaction with her doll. Betty always wanted to have her doll nearby, but she didn’t always hold it the way one would hold a child. Sometimes she’d pick the doll up by its head, or carry the doll around in a plastic grocery bag. She was comforted by having the doll nearby, but she didn’t interact with it as though it were real. Out of respect for Betty, we handled the doll carefully, but rocking the doll throughout dinner wasn’t necessary for Betty’s peace of mind.
When interacting with someone who is soothed by doll therapy, always ensure that you act as though the doll is a real baby. Offer to hold the baby, and hold it correctly as you would a real child. If someone is upset their therapy doll is not within sight, provide an explanation that would make sense if it were a real baby.
Saying “it doesn’t matter where the baby is—it’s just a doll!” can be quite upsetting. Instead, saying “oh, your baby is having a nap and the nurses are keeping an eye on her. Best to let the sleeping baby sleep.” Your reassurance with an explanation that fits the scenario will provide more peace of mind.
Therapy dolls can meet someone’s need to nurture and care for others. It isn’t only women who have a need to nurture. Many elderly men with dementia do very well with a therapy doll as well. One gentleman we met, Dyck, was rather despondent. He wasn’t interested in joining any of the activities in the long term care home he had just moved into. He was even trying to avoid some mealtimes.
The introduction of a therapy doll completely changed his demeanour. He was proud of his new role and was keen to show off his baby to others. When staff and visitors would say: “Good morning Dyck, how is your baby today?” he would proudly respond “she slept through the night again!” The tactile comfort of carrying the baby, joined with the sense of purpose and newfound caregiving role helped Dyck with his transition into long term care.
Doll therapy does not have universal appeal. Many people are not at all interested in carrying a doll; others are very well aware it is a doll and not a real baby; others still become so preoccupied with the doll that it can become problematic. Some people become concerned that the baby is sleeping all the time and they’re concerned when they cannot wake the doll. The inverse can happen too if the doll is designed to look like it’s awake—a concern that the doll never sleeps. If someone is distressed in any way by the details, then doll therapy may not be ideal for them.
The next time you’re in a long term care home and you see someone carrying a baby doll, remember that it could be a therapy doll and you should treat it as though it’s a real child. Ask the person holding the doll about their baby—you will likely see them perk right up and be very proud to tell you more. While doll therapy certainly isn’t for everyone, it can be a great comfort and benefit to those seeing a nurturing role.
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!
Learning to be zen and mindful is something that takes incredible focus, dedication and practice. There are entire fields of study dedicated to mindfulness and how beneficial it can be to our overall health. People spend excessive amounts of money to attend yoga and mindfulness retreats where they aim to be entirely present in the moment without regretting the past or worrying about the future. While these retreats may have their place, there’s another way to learn how to be present directly from a zen master.
Spend the afternoon with someone who has dementia. That’s right. That’s all there is to it. People with advanced dementia or Alzheimer’s disease can teach us a lot about how to be in this moment, completely and fully.
When you spend time with someone who has dementia, they are present in that moment and they’re acutely aware of their environment around them. They are noticing sights and sounds and temperature variations in that particular moment in time. They may not be able to articulate it entirely, but they are very much present in the moment.
The challenge is usually more for us than it is for them. We are the ones who have a hard time slowing down. How many details from our immediate environment do we miss completely because we’re totally absorbed thinking about the past or worrying about the future? When you spend the afternoon with someone who has dementia, they are truly with you for that afternoon. They are not creating a grocery list in their head. They aren’t worrying about what to cook for dinner later. They aren’t wondering if they’ll have enough time to squeeze in an extra errand after the visit. They are present, with you, in the moment.
Sometimes, someone with dementia will jump from one topic to the next and you might think that they weren’t engaged in the conversation if their brain was heading in such a different direction than yours. Remember that the connections between areas of the brain and the way information is stored, retrieved and processed is very much impacted by dementia. Two different topics that to you seem unrelated, might be connected in an abstract way for someone who has dementia. In their mind, those two topics may be connected and to them, it feels that the conversation is flowing. They aren’t feeling that the conversation is disjointed; they are following the conversation exactly as their brain is permitting in that moment. They are entirely present and engaged; their brain is just taking a different route than your brain.
Sometimes when someone has advanced dementia they may be using the knowledge that they gained early in their life to make sense of their world. They may ask for their parents; they may call you by their sibling’s name. They may reference attending school, or planning for their wedding, or having their first child. Sometimes, people interpret this to mean that someone with dementia is “living in the past.” This isn’t true.
Someone with dementia is living entirely in the moment today—they are as much in the moment as you are. Their brain is just relying on information from decades ago to explain what they are experiencing in this present moment. They recognize that you are a person who is close to them and very much connected to them, and their brain uses that archived knowledge when it assigns the name of their sibling to you. They are not living in the past; they are engaging with you in this very moment. They are just relying on data from their long-term memory that is no longer reliable. But be aware that they are very much present in the moment and acutely aware of information they’re absorbing through their five senses.
We can learn a lot from our friends who have dementia. If we can join them, at their pace, to experience the world around them, we can have a very zen moment. We can learn to notice and appreciate small details.
When a loved one has dementia or Alzheimer’s disease, it can be difficult to know what to talk about. Sometimes, family members will even say “I didn’t know what to talk about and it felt awkward, so I just stopped visiting.”
Rest assured, your visits mean the world to your loved one! It’s almost guaranteed that any awkwardness was felt by you, more than it was felt by them. Sometimes, just being present is enough. Just being together in the same room conveys love and caring and appreciation.
When you do try to strike up a conversation, here are a few tips that may ease the conversation.
1. Talk about right now
Comment on your surroundings—are the flowers just poking through the ground outside? Is it warm or cold out? Is it a bright sunny day or dreary and overcast? When you comment on the environment around you, you are welcoming the person with dementia to experience the environment equally. They too can comment on the weather or the temperature. They too can appreciate the view out the window of the garden or the trees or the sky. Commenting on this very moment does not require memory or complex executive functioning. Simply noticing and commenting on your five senses is a great way to stay focused on the moment at hand and invite your loved one to join you on equal footing.
2. I thought of you the other day when…
This is a great way to draw your loved one in and help them to feel connected to you and your everyday life. This simple line conveys ongoing love and caring. It gives you the opportunity to share more about what is happening in your life. You can cue your loved one with some information and it may spark a memory that otherwise may not have surfaced. When you say “I thought of you when I was driving Liam to school the other day…” you might be surprised that your loved one suddenly asks about their grandson Liam and a whole new conversation starts.
3. I was remembering the time you…
Get the storytelling rolling without asking a question. If you ask “do you remember the story you used to tell about….” It puts pressure on your loved one to remember something specific. Instead, you start the story by saying “I was remembering the story you told about…” If you see the spark of recognition, then step back and let your loved one fill in all the blanks. If they can’t recall that story in the moment, you can tell it however you best remember it and share that family moment together. Either way, you’re sharing your family history together without it feeling like a “test” that someone has to remember.
4. What is your favourite…? Do you prefer…?
If you’re going to ask a question, be sure it’s an opinion-based question. Opinions can’t be wrong! If you ask an opinion-based question of someone who has Alzheimer’s disease, you may be amazed at the robust answer you receive. Asking “did you attend bingo yesterday afternoon?” is a fact-based question. The answer is either correct or incorrect and the person with dementia can sense it. If they’re unsure of the answer, the question suddenly feels like a test. Instead say, “I see both bingo and euchre are on the schedule this week. Which do you prefer?” The opinion-based question invites your loved one to provide a personal opinion as a response. If they actually did attend bingo yesterday, you may cue their memory of attending bingo by providing information before you ask the opinion question.
5. What do you think about…?
Again, this question is an opinion based question. Ask “what do you think about…?” of things that are in the moment and do not depend upon memory or complex reasoning. Asking “what do you think about the upcoming election?” is probably not a fair question unless your loved one is a long-standing political junkie who has been following the news. Asking “what do you think about this guest on Ellen DeGeneres?” while you’re watching the show together is probably a better question. It is current and based on information from that moment only. Because it is an opinion question, it allows for a response of “I don’t know” or “nothing” and that’s perfectly fine. You may just be surprised at what does pop out though!
Don’t be afraid of having a conversation with loved ones who have dementia or Alzheimer’s disease.
There may be times when you need to carry more of the conversation or times when you are simply sharing comfortable silence together, but there will also be times when your loved one will surprise you by sharing more opinions or memories than you expected! If you follow the 5 tips above and stay completely in the moment, provide some information to cue your loved one, and only ask opinion-based questions, you just may have more engaging conversations.
Are you hosting any holiday gatherings where you have invited elderly relatives who have health conditions? You have probably already thought about accessibility accommodations such as helping them into your home and ensuring they have access to a bathroom. Those elements are very important and should not be overlooked.
Another element that should not be overlooked is how to make the overall
environment more manageable for your elderly loved ones, especially when there are health conditions to consider.
If someone has a chronic illness such as CHF or COPD, they may fatigue very quickly and need an opportunity to rest.
If someone has edema in their feet or legs (swelling) they may need a chance to sit with their legs elevated.
A stroke survivor may find the environment overstimulating and may need relief.
Someone with dementia may need some peace and quiet and a break from the noisy environment.
Hearing aids may blur the sounds into a din so that individual voices are difficult to discern, and someone with hearing loss may need an auditory break.
To help facilitate these needs and more, you can create a Quiet Zone for your holiday gathering.
Part of the beauty of a Quiet Zone is that it can meet the needs of so many different health conditions. It is one solution that actually meets numerous needs simultaneously. It may even be appealing to younger family members too!
A Quiet Zone is a space dedicated to quieter interaction and less stimulation. Ideally, the Quiet Zone would be a separate room, but if that’s not possible, then a nook or area that can be allocated as the Quiet Zone.
The Quiet Zone should be less stimulating than the environment of the main event. If there are Christmas carols blasting on repeat in the dining room, the Quiet Zone does not have any music. If the Christmas tree in the living room has blinking lights and a miniature train set zooming past, the Quiet Room has steady, ambient lighting that isn’t distracting.
While the main event likely includes loud chatter, many people speaking at once, laughing, and loud voices to be heard over the din, the Quiet Zone is where people can have one-on-one conversations that can be more easily heard and understood. For relatives of any age, the chance to step away from the noise and engage in a more in-depth one-on-one conversation might be a welcome relief.
Someone who tires easily in a crowded room of people might appreciate the relief of settling into the Quiet Room. Other guests can then take turns, one at a time, visiting within the Quiet Room. This way, everyone is supported to be part of the family gathering, but they can participate in a way that matches their individual needs. Having a space to retreat may allow people to reserve their physical and mental energy to join the group for dinner.
The Quiet Room makes it possible to have a quick cat-nap if needed. Giving the brain an extra boost of sleep can make the difference between enjoying the rest of the event, and just feeling overwhelmed and overstimulated. Family members who are stroke survivors or who have dementia will particularly appreciate the opportunity to have a power nap.
When the brain has been impacted by stroke or dementia, part of the brain may not be working the way it once did. The remaining parts of the brain are functioning on overdrive to compensate for the losses. Those over-active brain areas tire easily and benefit enormously from rest. A Quiet Room creates the space and permission to invite such guests to rest their brains when they need it most.
This holiday season, consider creating a Quiet Room for large family gatherings. The Quiet Room will be a retreat space to ensure that all your guests find the event manageable and can enjoy it fully.
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.