News and events

Volunteering at Highview: “It’s so worth it!”

When the opportunity to volunteer at Highview Residences came up, Joanne Hammerton saw it as a perfect fit.

“My mother had dementia,” she explains. “I was recently retired. I had the time, and I could use my experience.”

In addition to her personal experience with her mom, Joanne had relevant professional experience from her years working on various research studies as an epidemiologist in Western University’s Faculty of Nursing, mostly around women who had left an abusive partner. She thought volunteering would help to bring some meaning and positivity to the journey she had been on with her mom.

She recognized that volunteering at the retirement home where her mom had lived from March 2020 until her recent death would have been emotionally difficult. Once she’d given herself time to heal a little bit, she began volunteering at Highview London.

“It was sad when I would go and visit my mom, and she wasn’t who I knew her to be anymore,” Joanne says. “But I’m entering people’s lives at Highview at a different point, where I don’t know them in any other way. And so, there isn’t that same sense of loss for me as with my mom. I’m just meeting up with people as they are now and trying to hold space for them.”

I Just Try To Make It a Fun Time

One of the first activities Joanne got involved with at Highview was the Salon Social. For many of the residents who attend on Tuesday mornings, it’s a familiar activity that keeps them socially active.

Joanne explains it this way: “My mom was of that era where she would go to the hair salon once a week, or once every other week, and get her set. She would see the same people at the salon because they would all have their appointments around the same time. And it was just such a good social time for her even as she became confused. She looked forward to those salon visits.”

When Highview’s activation coordinator asked her whether she’d like to be part of it, Joanne laughingly said, “Are you kidding? This is my dream come true!”

That’s because, as a little girl, she always had a doll’s practice head with hair that she styled. And as a mother, she always did her daughter’s hair.

Joanne says that Highview’s salon looks like “a real little salon”, but she hastens to add that she’s not a licensed hairstylist. Yes, she’ll curl hair with a curling iron, but what she really focuses on is social interactions.

“I just try to make it a fun time.” She says she plays music on her phone that she knows each resident will like and visits with the women who come to the salon. “We just talk. I’m sure my role will evolve into more, but for right now, that’s where we’re at. And I’m good with that. Because this is a great way for me to get to know people and feel comfortable with them and vice versa.”

Any Point Of Connection Is What I’m Aiming For

When Joanne doesn’t have any “customers”, she wanders out of the salon and mingles with people in the family room.

“If there are some residents who are watching a movie, I’ll sit down, ask them what they’re watching, and get into a conversation with them. Or sometimes people are working on puzzles, and I’ll sit down and ask if I can work on a puzzle with them. Any point of connection is what I’m aiming for. That’s what I’m there for.”

She sometimes also helps feed residents who need the assistance. “I try to have a little bit of a conversation while I’m doing that, to make it more of a normal mealtime, rather than something to just get through.”

Not all residents are able to verbally express their thanks, but that doesn’t matter. There’s one resident who’s never said anything to Joanne. “But I can see the appreciation just through her eyes. We have this connection. It’s such a good feeling to know that you’re serving someone in that way.”

Appreciating The Little Things

She says that spending time with people who are living with dementia has taught her so much: about just living in the moment and about appreciating the little things.

“It brings me joy to form connections and see residents enjoying the small pleasures of life. Even when I sit with someone and help to feed them.”

And should she ever run into an issue, Joanne knows that someone on staff at Highview will be there to support her. “I always feel like the doors of communication are open.”

Hayley Gignac, Highview London’s General Manager says, “Having Joanne here is like a burst of sunshine, every time. She clearly loves the residents, and they really enjoy what she’s doing with them. We love all our volunteers and are so thankful for the extra time they spend with our residents.”

A Warm And Inviting Atmosphere

Joanne remembers the first time she walked into Highview. “I just felt like it was such a warm and inviting atmosphere. It truly did feel like a home. Especially the way the whole kitchen and dining room are set up, unlike anything I had seen before anywhere else.”

To sum up, she says that she feels like people really enjoy her being there.

“If someone is thinking about a volunteer position, I would say that it’s so worth it. And yes, it’s sometimes hard to see people struggle, but I think that if you just accept them where they’re at, there can be so much joy in it.”

Highview Residences is a specialized care home for people with dementia. This secure home is purpose-built with a unique design that is just like your home only bigger: private bedroom and bathroom, small dining room, walking gardens and truly person-centred care supports our residents to the end of life:  Each Moment | By Design | With Love.

 

And Highview loves our volunteers! If you’re interested in learning more about volunteering at Highview please email our Coordinator of Activation:

Kitchener – Madison: recreationkw@highviewres.com

London – Heidee: recreationldn@highviewres.com

Event Recording: Toolkit to Manage the Risk of Getting Lost or Going Missing for People Living with Dementia

Featuring:
Noelannah Neubauer, PhD, OT Reg. (AB)
and Isabella Chawrun, PhD Student

Summary:
In this Webinar, Noelannah Neubauer and Isabella Chawrun gave a live orientation to the newly developed toolkit from the University of Waterloo titled “Toolkit to Manage the Risk of Getting Lost or Going Missing for People Living with Dementia”. This Toolkit is aimed to support people living with dementia and their care partners to reduce a person’s risk of getting lost and going missing. This Toolkit was co-developed by people with lived experience, service providers, search and rescue personnel, and researchers with funding support from Public Safety Canada. During this webinar, the presenters walked the audience through the Toolkit, who was involved in the co-creation process, and intended use in the community.

Learning Objectives:
How and why this Toolkit was created,
How to use this resource by orientating the audience to the various strategies included in the Toolkit,
How the wider community can benefit from using this resource and who the intended audience is, including how clinicians can refer clients to this resource and how police can use this resource as a handout to people with suspected dementia.

Note: This integrated KTE webinar event is brought to you by brainXchange in partnership with the University of Waterloo and Public Safety Canada, and is re-posted with permission.

The Stages & Steps to Picking a Dementia Home

by Joy Birch, Chief Operating Officer, Highview Residences

The hope for this article is to provide you with tools, resources and thought-starters to help support your search for a home for your loved one who has dementia. Feedback is welcome! Let us know how you’re finding it works for you.  Download, save it, print it, forward it – we hope it’s helpful.

There are five stages involved in choosing and moving your loved one who has dementia to a home, however, every person is different and so your journey will be different also! Through years of working with families as they navigate this part of the journey, we have generally found these are the Stages:

  1. Discovery – Info Gathering
  2. Financial Review
  3. Home Visits
  4. The Waiting List
  5. Saying Yes and Moving Day

 

Stage 1 – Discovery and Information Gathering

This stage can be longer depending upon how much time there is between diagnosis and decision-day. Sometimes families begin to look at homes as soon as there is a diagnosis of dementia; other times, for all kinds of reasons – it is an urgent situation and a solution is needed – right now (more about that urgent solution later). The goal of this stage is to learn the terminology, identify what matters to your loved one and to you, the benefits and features of different homes as well as the differences in Ontario between public (long term care) and private (retirement homes). Depending upon how much time you have, you may want to make the following lists to organize your Discovery:

A) Online research – input words like: “dementia + home + city name [the city you would like the home to be in] and see what homes come up – that’s a good place to start. Note the list and start to look at each home. What are the top three (or five) homes listed?:

  1. ___________________________
  2. ___________________________
  3. ___________________________
  4. ___________________________
  5. ___________________________

Don’t forget to search for Reviews: 

Google Reviews can be left by anyone, and often include a star-rating as well as comments. Try to look at trends or themes, and the overall rating – as opposed to getting stuck on one or two reviews that were not-positive (there is always the chance of outliers).

Indeed is a website for people who are looking for a job – but they also have a Reviews section for employers. You can easily access and read the Reviews posted by current and past employees: this will give you an idea of what the staff that will be caring for your loved one, have to say about the home.

B) Word-of-Mouth and Conversations

Do you know anyone who has recently walked this path of caring for someone who has dementia? If yes, make a list and find a way to reach out to them: ask them some basic questions about what home,  were they happy with the care, and if they have any advice? It would be good to ask them: “what was really important to you when you were looking?” Geography is also important – is the home conveniently located on your usual-routes, so that it is easier for a spouse / family / friends to visit more often?

  1. List of homes
  2. Any advice?
  3. What was important?

C) Trusted sources

Who would be on your list of trusted source for information and would you be able to ask them if they would recommend a home that cares for people who have dementia?

  Name: Phone #: Their Suggestion:
Lawyer
POA
Family Doctor
Estate Planner
Financial Planner
Minister / Priest
HomeCare Agency
Social Worker
Neurologist
Geriatric physician
VON
LHIN/Home Community Care
Hospital Discharge Planner
Family

D) Home amenities and design:

Let’s take a minute and think about the key things you’d like a home for your loved one to have or to do. What is non-negotiable and what is nice-to-have? Here are some ideas to get you started – try using a highlighter for must-have, a checkmark ( ✓) for nice-to-have and cross out the ones that don’t apply. Are there any to add that aren’t on this list?

Private room Private bathroom Government subsidized or Private Home

 

Geography-what city/cities?

 

Continuum of care or dementia specific home Accessible gardens
On City-bus route

 

A la carte care services or

All-inclusive care services

 

Ability to care for all stages of dementia, including “full-care”
Palliative care (end of life)

 

Delicious home-cooked meals

 

Dementia specific activities
Nursing staff on 24/7

 

 

Visiting hours and places for family to visit / to dine Can outside care be brought in
In-House Physician Secure – is the home fully safe Type of bathing / personal care services
Laundry services Pets allowed

 

Stage 2 – Financial Review: 

It is important to have a good understanding of the costs for monthly fees, as this may determine which type of home is the best choice for your loved one: private home, which is called a Retirement Home in Ontario (no government subsidy and all fees are paid for by the Person) or Long Term Care (“LTC”: government funded, fixed fees).  This is also why it’s helpful to understand the low-and-high fees for a home that is not all-inclusive: to be able to budget accurately. As an example, some families will use a retirement home as a “gap strategy” – and determine there is the financial capacity for x-years, and by then their loved one may be first on the waiting list for a LTC bed. It is recommended to ask all homes you’re considering, “what services are included in the monthly fees, and what do we need to pay extra”. It is also good to ask:  “if at some point, my loved one needed full-care (they’re in a wheelchair and you’re helping with feeding, dressing, bathing and continence) – what are the fees then”?

Personal care Continence care Medication management
Portering Bathing Lift-assistance (mechanical lift)
Laundry Snacks and meals Therapeutic or specialty diets
Bathing Feeding Skin/wound care
Dementia specific activities Housekeeping Ratios of care (number of PSW:Residents)

* if not included in the monthly fees, then the best-budget is one where you include the cost of each of these items, in the event that your Person needs them, they’re already in the budget.

 

Stage 3 – Shortlist and Home-Visits

Depending upon the answer above regarding financial capacity and the budget, you now can look at private retirement homes or public (LTC homes).  Based upon your initial research and review of websites, make a short-list of the top five homes you’d like to visit and contact them to book a tour. Prepare for and attend the tours with a specific list of questions that you will ask every home, and write down the answers. Oftentimes there is a lot of information shared at these tours and it can be overwhelming. Take notes and bring another person with you to help process the information afterwards. Be sure to ask about the length of waiting list and all the previously mentioned amenities. Most importantly, when you walk into a Home – stop for a moment, breathe, and let it register with you: “how does his home feel to me?” Many families will say “I knew when we first walked in the door”.

Top 5 Homes to tour & date of tour:

  1. _______________________________________________________
  2. _______________________________________________________
  3. _______________________________________________________
  4. _______________________________________________________
  5. _______________________________________________________

 

Stage 4 – The Waiting List

Most retirement homes that have specialized care for people with dementia. The recommendation is to ask how long the list is; is there a cost to go on the list; what is the process and timing for when a room is offered; what happens if you decline the room when offered? It is a good strategy to go on the waiting list for your top 3 homes and see which one comes up first. These homes will likely stay in-touch with you through the waiting time and it’s good to keep them updated on how your Person is doing.

If you’ve chosen LTC then an application and referral needs to be completed with the LHIN/Home Community Care Coordinator. They will help guide you in how many homes to choose and hopefully be able to let you know approximately how long the waiting list will take.

How do I know when it’s time – and What if it’s Urgent?

This is such a difficult decision and I see our families struggle with it every day. Of course, your loved one wants to stay at home: we all would! However, typically their ability to make decisions and weigh-out information is deeply impacted by their memory loss. That’s when the spouse or family need to step-in and make these decisions for their loved one. Take a look at the article “4 signs it’s time to make a move” that helps to identify when it’s time to make a decision and take action.

Sometimes, despite the best-planning, the situation changes and you have an urgent need for a home for your loved one: it could be a change in their health due to a fall or safety and/or that their care partner is no longer available for a host of reasons. This is when it gets tricky because a room may not be available at the time that things are changing and you need it! Here are some suggestions:

  • If you are considering retirement home / dementia / memory care, contact all the homes on your list – and let them know you have an urgent need for a room. We all want to help, and will work with you to see if there is a solution.
  • If you are on the list for long-term-care, then contact your Caseworker for the Home Community Care and let them know that things are urgent. They will guide you through the selection of homes for a urgent/crisis need
  • Again, sometimes, families on an LTC list will consider retirement homes, because the waiting list is shorter and the urgent need can be met – until – an LTC room is offered.

 

Stage 5 – Saying Yes and Moving Day

It may seem like it takes a while, but the day will come when you’re offered a room. Now you have to decide: accept the room or go to the bottom of the list again. This is a tough decision for most families as they prefer to have their loved one at home, however, the strong recommendation is to say “yes”.  So many times, we have families on the list who say “not yet” and then unfortunately the time comes and it’s too late: their loved one has changed, had a fall, or becomes palliative.

So, you say “yes” – what happens next? There will be an assessment to ensure that the care needs of your loved one can be met; an admission package to complete so that the home knows as much as possible about your Person before they move in and a moving-date is set. The moving process alone can feel daunting, but there are transition services out there whose specific job it is to help make the move as easy as possible for your loved one and for the family: they are worth the time and money.

Many families will say “we never could have imagined how much better it could be” and that they wish they’d made the decision sooner. The Resident will generally adjust to their new home sooner, when they move earlier in the progression of their disease and then they are truly getting the level of care that is most needed, in a safe and secure environment.

This article really is an overview of the things to consider – and there will always be more questions, specific to your situation and your loved one. We are here to help. You will find many resource articles on our website and we are just an email or call away (contact information is below).

 

Joy Birch is the Chief Operating Officer of Highview Residences: a specialized care home for people with dementia. Joy draws on personal experiences, research and (mostly) the conversations with families she meets every day, when helping them navigate the process of finding a home.  For a printable pdf version of this article, click here.

 

Highview Residences has two homes in London and two homes in Kitchener. 

Highview Residences is a specialized care home for people with dementia. This secure home is purpose-built with a unique design that is just like your home only bigger: private bedroom and bathroom, small dining room, walking gardens and truly person-centred care, supports our Residents to the end of life: Each Moment | By Design | With Love.

Highview Residences London
Hayley Gignac, General Manager
gmlondon@highviewres.com
p: (519) 472-8882 ext 201

Highview Residences KW
Katlynne Elgie, General Manager
gmkw@highviewres.com
p: (519) 893-2374 ext 301

Keeping couples together

When a husband and wife both have dementia, they can feel lost if they’re not able to continue living together. And yet, that’s often what happens to couples who need dementia care. They become separated, and they lose one another’s support.

That’s what happened to Nancy, Heather, and Elizabeth’s parents. The three sisters could see a big change in their mom after their dad was transferred to long-term care from the retirement home apartment they were living in together.

“Our dad broke his hips within four months of each other,” says Elizabeth. “We were fortunate that he got into long-term care right next door to our mother.”

The trouble was their mom couldn’t visit independently because of her dementia.

“He could have been 100 miles away,” Elizabeth says. “It did not help her situation in the least.”

To further complicate matters, this all happened during the height of COVID.

“She didn’t know there was COVID and was unable to answer all the screening questions. When we took her to visit our father, she didn’t understand why she was getting a test or that she had to sit for fifteen minutes.”

The sisters put their mother on the waitlist for the long-term care home so their parents could be reunited. But because their mother’s care needs weren’t as great as many other people on the list, it would likely be a very long wait.

“They could not understand why they had to be separated,” Nancy says.

“It was horrible,” Elizabeth adds.

“She was desperately lonely without him,” Heather says. “She was in a retirement home on her own, but she really needed long-term care herself.”

That’s when the sisters looked at moving their parents to Highview Kitchener. Instead of possibly waiting years to get their mom into the long-term care home, they could get both their parents into Highview within a month and a half.

“I would say that our mother is much more relaxed at Highview, knowing that he is there,” Elizabeth says. “And to me, it has made all the difference for her.”

It also helps that Highview specializes in dementia care.

“The staff is very adaptable to all levels and idiosyncrasies of dementia,” says Elizabeth.

What’s curious about their parents’ situation is that they spent very little time together for much of their marriage.

“Our dad worked until he was 87, six days a week,” Heather explains.

“In fact, our parents did not get along very well,” Nancy adds. “Now, they sit and hold hands and kiss, and everybody thinks they are such a sweet couple.”

Although they lived quite separate lives for much of their marriage, as their respective worlds became smaller due to dementia, they came to rely on each other and benefit greatly from each other’s company.

Liz Shantz has a similar story to tell. Her cousin, Audrey, and Audrey’s husband, Ross, both had dementia. Liz acted as the substitute decision maker for both of them through a power of attorney for personal care.

Audrey and Ross ended up living together at Highview Kitchener, but not until after they became separated as a result of their dementia.

“Audrey has the dementia with forgetfulness,” Liz explains. “Ross had the dementia with I don’t trust a soul. He was very paranoid, which caused a lot of troubles.”

When Ross was in hospital with heart issues, Liz and others had to stay with Audrey.

“She would come into the room in the middle of the night and ask where Ross was, forgetting that he was in the hospital.”

Things didn’t get any better once Ross returned home. “They were forgetting to take their medication. They were forgetting to eat.”

On top of that, he was locking her out of the house. He was also threatening caregivers that were coming into the home. Eventually, the police were called in. Ross acted out, and the police took him to hospital.

Recognizing that it wasn’t safe for Ross and Audrey to continue living at home, Liz and other family members arranged to move them to Highview Kitchener.

When Ross was first scheduled to be transferred from the hospital to Highview, he acted out again, something that’s not entirely unexpected for his type of dementia. This, along with COVID restrictions at the time, meant that Audrey was without Ross at Highview for two weeks. But in the end, the couple was reunited – in a safe environment where each of their unique needs could be met.

“Although they weren’t a lovey-dovey couple, they needed each other,” Liz says. “Ross needed Audrey for her eyes (he had poor vision), and she needed him for the support. It was such a relief to know that they were cared for and that they were together.”

For many couples, staying together makes them feel complete, even if they’re not able to say so. That can be true whether it’s because they’re fiercely committed to their wedding vows or they’re simply reassured knowing that their lifelong partner remains at their side.

In many cases, couples in need of dementia care can be reunited at Highview much quicker than at a long-term care home. In fact, both spouses may not even have dementia. If one of them has physical disabilities, they’ll receive additional care and support. Highview is a secure home, located in London and Kitchener.

For more information about Highview Residences, contact:

Highview Residences London
Hayley Gignac, General Manager
gmlondon@highviewres.com
p: (519) 472-8882 ext 201

Highview Residences KW
Katlynne Elgie, General Manager
gmkw@highviewres.com
p: (519) 893-2374 ext 301

Making decisions for a family member who has dementia

How a Power of Attorney for Personal Care works in Ontario and what that means in practical terms when making decisions for someone who has dementia

You’re concerned that a family member who’s living with dementia isn’t taking care of themselves properly. When you broach the subject, they don’t think there’s a problem. Everything is fine as far as they’re concerned. They don’t understand why you’re making such a fuss.

You’re not reassured. Recent events don’t bode well. Maybe the person hasn’t been eating, or they’re not taking their pills, or they’re getting lost, or they’re becoming socially withdrawn and depressed.

You suspect they don’t want to admit there’s a problem. There’s also a good chance that they simply don’t remember the incidents or behaviours you’re so concerned about. You begin to wonder whether it’s still safe for them to make decisions about the care and support they receive now and in the future. And you’re worried that if you or another family member doesn’t step in soon, something will happen, something very bad.

Stepping back before stepping in

If safety is an issue, you’re right to be concerned. Your family likely should get more involved. However, before “stepping in,” it’s important to take a step back and ask yourself the following:

  • Are you concerned because the person with dementia isn’t able to appreciate the risks they’re facing?
  • Or are they aware of the risks and you’re really concerned about their unwillingness to address them?

Just because you don’t like a decision a person is making (or not making) doesn’t mean you can overrule them, even if they have dementia. Each of us has the right to live at risk so long as we’re mentally capable of making that choice.

When is a person considered incapable of making decisions?

So, when is a person considered mentally incapable of making their own decisions?

According to Ontario’s Office of the Public Guardian and Trustee, a person is incapable of making personal care decisions when they “can’t understand the information that is relevant to the particular personal care decision or can’t appreciate what could happen as a result of making a certain decision (or not making a decision) about the matter.”

Personal care decisions can be about things like medical treatment. They can be about where the person lives, what they eat, who helps them dress and wash themselves, what they wear, who ensures their safety. That sort of thing.

I’ll use a case example to illustrate. Wilfred has dementia when he develops kidney disease. A nurse educator spends a session teaching him what he needs to know about his kidney disease. When she asks him to repeat back what he’s learned from her, he can’t recall a thing.

In other words, he can’t understand the information that was relevant to managing his own kidney disease. This means that he’s incapable of making informed decisions about any treatment he might be offered for his kidney disease.

A person may be capable of making certain decisions but not others

It’s important to understand that even if a person isn’t capable of making a particular type of decision, it doesn’t automatically make him incapable of making other decisions.

In Wilfred’s case, although he isn’t capable of making decisions about the treatment of his kidney disease, he is still quite competent at making the routine decisions all of us make as we go through our day. Deciding what to wear, when to shave, when to have a bath, what to eat, that sort of thing. He continues to live on his own and remains quite active.

Who determines whether a person is capable?

Many people will designate someone to make personal care decisions for them in the event they become incapable.

In Wilfred’s case, that’s his son, Phil.

Before he had dementia, Wilfred completed a Power of Attorney for Personal Care which named Phil as his substitute decision maker. Phil is expected to step in and make personal care decisions on his dad’s behalf, but only if his dad is incapable of making them himself.

But who determines if Wilfred is incapable of making a decision? Generally speaking, that would be Phil, the person with his Power of Attorney for Personal Care. There are a couple of exceptions, though. If the decision is about medical treatment or admission to a long-term care home, a health care professional has to decide whether Wilfred is capable of making the decision himself.

Wilfred’s kidney disease progresses, and his nephrologist offers him dialysis. Phil tries to tell the nephrologist that his dad isn’t capable of making that decision himself (based on what Phil witnessed in his dad’s session with the nurse educator). But the nephrologist has the conversation with Wilfred anyway.

Wilfred gives the impression that he’s following along and taking in everything the nephrologist is telling him. But the nephrologist soon figures out that Wilfred isn’t able to retain any relevant facts about dialysis and isn’t capable of giving informed consent. The nephrologist is obliged to ask Phil to make the decision as his dad’s substitute decision maker.

Phil is a little frustrated. He doesn’t see why the nephrologist couldn’t have simply taken his word that his dad was incapable of consenting to dialysis. But because the decision was about a medical treatment, the nephrologist was the one responsible for determining whether Wilfred was capable, not Phil.

Incapacity isn’t necessarily permanent

But why couldn’t the nephrologist simply have consulted the nurse educator’s notes and realized that Wilfred was incapable of consenting to dialysis himself?

Here’s the problem. The ability of some people with dementia to think clearly can fluctuate from hour-to-hour or day-to-day. Even though Wilfred couldn’t understand his kidney disease during the session with the nurse educator, the nephrologist can’t necessarily assume that the same is true now.

Who decides when there’s no Power of Attorney?

If a health care professional determines that a person is incapable of consenting to treatment and there’s no Power of Attorney for Personal Care, they will turn to someone else to provide the consent on the person’s behalf. In Ontario, there’s a hierarchy of people who can act as substitute decision makers.

Simply being a person’s relative doesn’t automatically make you their substitute decision maker. Check the hierarchy for clarification.

Deciding on someone’s behalf

When it falls to Phil to decide whether or not to consent to his dad receiving dialysis, he needs to consider a couple of things. First, did Wilfred previously express wishes, while he was still capable, about the decision he’s entrusting Phil to make on his behalf in this sort of situation? If Wilfred did, then Phil is obliged to try to follow those wishes.

But that isn’t the case. So, what Phil needs to do instead is act in Wilfred’s best interests. Phil has to weigh the pros and the cons of dialysis and understand the ramifications of consenting to it – or not – on his dad’s behalf.

Considering a move

Eventually Phil becomes concerned about his dad living on his own in another city. Wilfred isn’t taking his medications regularly, even though Phil got his dad’s pharmacist to dispense his pills in blister packs that indicate when he should take them. Wilfred also went missing one day. Fortunately the police found him.

It seems to Phil that the best course of action is for Wilfred to move to some kind of assisted living community that is skilled at supporting people with dementia. Wilfred lets Phil take him on a few tours and they’re able to discuss what Wilfred likes and doesn’t like about each place. But when Phil suggests his dad move to a place close to where he lives (650 km away), Wilfred digs in his heels.

Not an easy decision

Persuading a parent with dementia to move isn’t easy. Sometimes persistence and patience pay off in the end, but not always.

If Wilfred continues to resist pleas for him to move, Phil may need to turn to professionals for help. Wilfred is in serious jeopardy, after all. The fact that he’s not taking his medications is a serious health concern. And if he’s gone missing once, it’s very likely he’ll go missing again. It’s important to note that half of people with dementia who go missing for 24 hours or more are seriously injured or killed.

Phil decides that his dad should move to long-term care. Even though he has a Power of Attorney for Personal Care which allows him to determine whether his dad is capable of making most personal care decisions, when it comes to making a decision about long-term care (or medical treatment), a health care professional needs to be involved. Wilfred’s family physician confirms that Wilfred is incapable of making this decision himself. That’s because Wilfred can’t appreciate what could happen if he continued to live on his own.

Although Phil is now in a legal position to get his dad admitted to a long-term care home against his will, he’s understandably ambivalent about taking that step. He doesn’t want to strip his dad of his dignity and independence. He’s also aware that if he doesn’t act, his dad is at risk of becoming seriously ill or dying.

He needs support taking the next steps. How does he choose the right home for his dad? What should he tell him? How would a move to long-term care even work, given his dad’s resistance?

Supporting you through the process

If you’re considering moving a family member with dementia to long-term care in London or Kitchener, Ontario, contact the folks at Highview Residences. They can help you work out your next steps. They take the time to understand your situation and help you through the decision-making process. The support they provide is both practical and emotional.

Highview Residences London
Hayley Gignac, General Manager
gmlondon@highviewres.com
p: (519) 472-8882 ext 201

Highview Residences KW
Katlynne Elgie, General Manager
gmkw@highviewres.com
p: (519) 893-2374 ext 301
 

Special note: Laws about consent to treatment and substitute decision makers vary by province and country. This article only applies to the province of Ontario.

 

Related article:

 

Daughter relieved to find around-the-clock dementia care for her mom

24/7 clock

Leslie’s mom vowed that the only way she’d leave her apartment in London, Ontario was feet first. She remained independent well into her nineties, but then her behaviour changed.

She had trouble bathing and dressing. She cooked for herself, but would lose interest part way through. She still loved to go grocery shopping, but she’d get up during the night and throw away the food she’d bought because she thought it was poisoned.

Her adult children learned that she had Lewy body dementia, a type of dementia that can cause visual hallucinations and changes in alertness and attention.

Sometimes she’d call her kids in the middle of the night while experiencing a frightening hallucination.

“We were really concerned,” Leslie says about one of these middle-of-the-night calls. “She said she’d called a cab. It was minus 16C outside. We knew she would just put on her housecoat and go downstairs. We were terrified she would go out the door and not be able to get back in.”

Couldn’t be left alone

It was clear that Leslie’s mom couldn’t be left alone. She needed someone with her around the clock. Because government-funded in-home help is limited, the family hired their own help, screening applicants themselves.

“It was so much work,” says Leslie, who lives in Kitchener and works full-time. “I did background checks and all that kind of stuff. And then people wouldn’t show up, people would work two weeks and then quit for whatever reason.”

Not only that, Leslie realized that her mom was going to burn through her money paying for personal care in her own home.

“All five kids agreed: this could not continue.”

But their mom remained resistant to the idea of moving, partly because of her dementia. “It’s hard when someone’s version of reality is inconsistent with their best interests,” Leslie says.

Finding a home dedicated to dementia care

When Leslie started searching for a new home for her mom, she didn’t realize there were places like Highview Residences that are dedicated to dementia care. It was actually another retirement home that recommended she check Highview out.

When she visited Highview, she was thrilled with their single-level cottage layout compared to the highrises she’d seen.

“It truly is a home environment,” she says. “It’s purpose-built for people with dementia.”

Convincing Mom

But she still had to convince her mom – if not to agree to the move, then at least to not actively resist it.

“Early on, I asked her, ‘Mom, if you ever had to move into a retirement residence, what would be a deal-breaker?’ And she said, ‘I’d want to take my cat.’ She also wanted to take her china cabinet with all of her favourite Royal Doultons in it.”

Highview was able to accommodate both.

Leslie says: “I’m pretty sure she thought she’d never be able to take her cat.”

In the end, her mom wasn’t happy about moving, but she didn’t resist.

The move

The move happened all in one day. Her new room at Highview London was set up while she was out with Leslie’s sister. Someone brought her beloved cat. The family worked together to make it happen.

“She walked into her room,” Leslie recalls. “Everything was familiar, which is very important for people with dementia. We stayed there for dinner. Highview manages this transition very well. I was sick that I was getting her to do something that she never wanted to do, and that was put her in a home. And they were so helpful and reassured me things would be okay.”

“I was very pleased, very relieved.”

Home-like, secure environment

Now Leslie’s mom has someone with her twenty-four hours. “It’s a very secure facility.” Leslie says. “She can freely go outside to the secure garden (which she loves) or go down to the end of hallway where there’s a beautiful sunroom. She plays the piano and can even go to the kitchen and cook or bake, if she wants to.”

Highview is also known for its relaxed, flexible dining where residents can eat when they want rather than at set hours. “Mom can go and ask for a snack,” Leslie says. “Families can come for a meal. The staff get to know people. They know my mom’s favourite things. They know her as a person, not just as that lady who lives on the sixth floor kind of thing. It’s very personal.”

Crucially, all Highview’s staff are highly skilled in dementia care. They not only help residents with their personal care; they keep them actively engaged.

Leslie says that her mom is very sharp. Despite her dementia, if you were to chat with her, she’s very charming and engaging. But when she was in her apartment alone, “she would go inside herself, and the delusions and the paranoia would just go off the charts.”

At Highview, that’s no longer a worry.

“Better care than I could ever provide.”

Leslie shudders to think what might have happened if her mom were still living in her apartment during the pandemic. In fact, she gets irritated with people quoted in the news who suggest that you should move your parents out of a retirement home and have them live with you during the pandemic, if you love them.

“If I could be doing that, I would be doing that,” she says. “You think this is just a convenience thing? I have lots of love and concern. I can help my mom get dressed, I can help her do all this kind of stuff. But I don’t have the stamina – not to mention the fact I work full-time – to look after her. I just don’t. She gets way better care at Highview than I could ever provide.”

Leslie’s impressed by how Highview has handled the lockdown. “Communication is so critical when you can’t be there. There have been family meetings in person and via Zoom, and regular emails. Joy (the Chief Operating Officer) is always responsive and gets right back to me. In fact, all their staff have been very responsive to any questions I’ve had.”

“I can be assured that my mom is well looked after. Never, never for a moment have I had any kind of doubt that she’s getting the best care.”

For more information about Highview Residences, contact:

Highview Residences London
Hayley Gignac, General Manager
gmlondon@highviewres.com
p: (519) 472-8882 ext 201

Highview Residences KW
Katlynne Elgie, General Manager
gmkw@highviewres.com
p: (519) 893-2374 ext 301

How to adjust holiday plans when someone in your family has dementia

Living room decorated for Christmas

If you’re spending part of the holidays at home with someone in your family who has dementia, adjusting your expectations will be helpful so that it is as positive as possible for everyone. And that’s not easy, considering how important holiday traditions are to many families.

We asked two experts for practical advice – Robin Smart, Public Education Coordinator for Alzheimer Society Waterloo-Wellington and our own Kait Carnegie, (former) Activation Coordinator.

Keep people emotionally comfortable

Robin: I think that it’s really, really important that you know that people living with dementia – no matter what type of dementia, no matter where they are in their journey of dementia – they retain the ability to feel emotion. They don’t always retain the ability to control their emotions, but they do retain the ability to feel their own emotion.

And so it’s really, really important that we keep people emotionally comfortable, that we keep them calm, that we keep them happy. That will make everybody’s life more comfortable.

People with dementia might not show emotions anymore with their facial expression. They might not have the words to tell you when they’re not feeling comfortable. But they will read your body language. And they will read your tone of voice. And they will know if you are being sincere with them, if you are comfortable with them.

Be aware of that to start with. You need to recognize that fact. And then you need to go with the flow. You’re not there to be the truth police, you’re not there to be Mr. or Mrs. Correction, you’re there to join their journey. What you want to do is you want to connect, not correct.

And if the person is having strong emotion, I think it’s fair to acknowledge that. “Yeah, it is really special, isn’t it?” Or, “That is important, isn’t it?” Whatever it is. And then they’ll likely be okay, often in a few minutes. These emotions can just bubble up out of nowhere. And you want to be aware that that’s not unusual in the disease process. And you want to be aware that it’s not always about you.

Reduce the overwhelm

Robin: People become easily overwhelmed when they have dementia. When you have a healthy brain, you have the ability to sort out what’s important to attend to and what can be ignored. You have the ability to hold multiple thoughts at a time. But people with dementia lose that. So, everything is incoming and intense and stimulating and it can be very overwhelming to them. And it can be very difficult to keep up with the pace of everything that’s going on in the holidays. It just becomes too much.

People with dementia process more slowly. They think and act more slowly. And so, they become easily overwhelmed, even though everybody’s having a good time. They can’t tune out the noise. They can’t ignore the flashing lights on the tree in the corner while the music is playing while the kids are there.

So, you really want to think about how you can make the atmosphere calmer, quieter and adequately lit so the person isn’t in danger of misinterpreting shadows or not seeing things clearly or at risk of tripping over things.

If your extended family is getting together by Zoom, you may have 12 faces on the screen all at once. It can be very confusing and very overwhelming. So, the person often just gets up and moves away. And you’re thinking, “Hey, I went to all this trouble. I got every cousin to Zoom in to say Merry Christmas to you. And what are you doing? Where are you going?” It’s hard to see it through their eyes and their filters.

Don’t expect traditional behaviours

Robin: Imagine that your family is gathered at the Christmas table for dinner (even if it’s a smaller group this year because of the pandemic). The person with dementia might get up and leave the table. They might find that all the noise and all the stimulation and all the conversation is too much.

Instead of insisting they come back and sit down, let them sit in a chair in the corner and observe from a distance. Maybe you take over a bowl of pudding or trifle or whatever you’re having for your Christmas dessert, let them sit there and eat their pudding, if that makes them comfortable. You want them physically and emotionally comfortable.

Activity ideas

Looking for things to do during the holidays with someone who has dementia?

Kait: You can get them to help with decorating the home or decorating the tree. Or making sugar cookies or gingerbread cookies and decorating them with their grandkids, or just allowing them to decorate them on their own. It can keep them a little bit distracted and busy on a task.

And while they’re doing that, you may reminisce about past Christmases or what their favourite part of the holidays is. That takes little to no brain power for them because they’re long-term memories [which they still have access to] instead of short-term memories.

Holiday music. It’s easy. Everyone knows the majority of songs or at least they know the rhythm or they can hum along. And it can cue them to what time of year it is as well.

A craft idea is to make homemade Christmas cards for family and friends. I make Christmas cards every year with our residents. It’s a very simple task of tracing or cutting out or just gluing things that are already cut out. We’ve made a Christmas card with “lights,” and the lights were actually finger-painted on.

And as long as it’s safe to do so, take them on winter wonderland drive. Go see the beautiful snow on the trees or, in the evening, go see Christmas lights.

Get them to help fill stockings for their children or their grandchildren. That’s something they can do pretty easily.

Above all, allow them tons of time to rest. The holidays can be exhausting for all of us, let alone someone living with dementia. They may be too proud to say they need a rest, but make sure there’s some sort of area for them where they can have some quiet time or just kind of unwind or get away from all the commotion.

If you’re looking for some fresh ideas on gift giving for your loved one who has dementia, be sure to read our article that includes a variety of suggestions:

https://highviewres.com/gift-ideas-for-someone-with-dementia/

 

Looking back on Cedar Creek House opening

On Thursday, October 24, 2019, we opened Cedar Creek House, our second residence in Kitchener for people with Alzheimer’s disease and related dementias. Here’s an excerpt from the article we posted for opening day. Although the world is very different now than it was in 2019, the care we provide hasn’t changed.

“It really is one of the best options for dementia care that we have in our region,” said Michelle Martin, Executive Director of the Alzheimer Society of Waterloo-Wellington. Because of Highview’s special person-centred approach to care, residents feel like they’re at home. And that takes a huge load off their families.

The home is small, warm, and inviting. Only 28 residents will live at Cedar Creek, which is divided into two cottages with a private bedroom and bathroom for each resident.

Life at Highview doesn’t follow a standard schedule for everyone. Residents can wake up, have breakfast, and get dressed when they’re used to. They can choose to take a walk in Highview’s secure gardens, watch a favourite TV show, enjoy art or music, or help out in the home.

In November 2017, Jane Klugman, President at Whitney & Company Realty Limited, moved her mom into Blair Creek house, Highview’s first home in Kitchener. “It’s been great for all of us,” Jane said. “We know our Mom is getting amazing care. We get regular reports that are very detailed. The whole team at Highview is very welcoming, and I know my mom is well looked after. In fact, she is more than well looked after. We’re thrilled.”

“We help families make the transition of moving their loved one from their current home to a new home, one that has been designed to help make their lives easier and enable their independence,” says Joy Birch, Chief Operating Officer of Highview Residences. “Our approach is to help our residents navigate their day, with a guiding hand and love, encouraging them to do as much as they can. We support them when and how they need it, specific to their interests and life-story.”

Highview provides a failure-free environment, according to Activation Coordinator Kait Carnegie. Part of her role is to get to know each person’s interests and abilities. “If someone wants to help bake, that’s great. But if they simply want to sit, have a cup of tea, or share recipes, that’s okay too.”

“My main goal every day is to put a smile on someone’s face,” she said. “It’s to make sure that every day our residents wake up feeling loved and cared for.”

“Staff care deeply about what matters to the residents,” said Mary Pat Hinton, CEO of Emmetros, the creator of SparxConnect, an innovative app that allows family to easily and securely share important personal life details and preferences of their loved one, share and receive daily updates, and chat with the people on the care team at Highview.

Building design is also key to Highview’s specialized care. In addition to being small and welcoming, the home has many dementia design features, including short hallways, calming colours, and clear sightlines. Both cottages have an enclosed garden with a figure-of-eight path to always bring the resident back home. All the wood furniture in the residence was sourced locally and is specifically designed to be appropriate for dementia care. The sights, sounds, and smells of home-cooking in the open-concept kitchen help with sensory cueing.

As much as the home is a nurturing setting, security is always a priority. The buildings have been designed to keep residents safe. Staff members are present at all times, day and night, and the home is fully secured.

The first Highview Residence was built in 2002 in London, Ontario by Cathy and Ross Chapin as a result of the personal struggles they endured when trying to find a peaceful place for Cathy’s parents to live after her father was diagnosed with Alzheimer’s disease.

A select number of rooms are now available at the new home in Kitchener.

For more information about Highview Residences, contact:

Highview Residences London
Hayley Gignac, General Manager
gmlondon@highviewres.com
p: (519) 472-8882 ext 201

Highview Residences KW
Katlynne Elgie, General Manager
gmkw@highviewres.com
p: (519) 893-2374 ext 301

Highview Residences Kitchener welcoming new residents once again

Woman with her daughter having video call with her mother. Woman connecting with her mother on a video call while at home.

 

Sandra’s mom moved into Highview Residences Kitchener just before the COVID-19 pandemic hit Canada in March. In fact, as of mid-May, Sandra hasn’t had the chance to visit her mom in person. She’s only been able to keep in touch through the phone or by making a window visit.

But despite all this, Sandra says that her mom is thriving at Highview.

“When I speak to her on the phone, I get a very good sense that she’s happy,” Sandra says. “Often the staff will send pictures through texts to me. And I absolutely love that. Because she’s smiling.”

In one of the pictures, Sandra’s mom was getting a manicure. In another, she was doing a craft. “These were things my mother never did. And the fact that someone opened her up to that… that makes me so happy.”

Highview staff stepped up during the pandemic

“Highview is an excellent facility,” says Lynn, who is the substitute decision maker for Ed, a long-time family friend who also lives at Highview Kitchener. “Their staffing ratios have always been good. Even at the height of the pandemic, when they were short-staffed, everybody stepped up and did everything they could to make sure that our loved ones were looked after. That was so reassuring.”

Lynn contrasts Ed’s experience with her father-in-law’s, who’s been stuck in his room for a month at the retirement home where he lives in another town. “I understand why it has to happen,” she says, “but the only daily contact he has with someone from the staff there is when somebody comes in with a mask, gown and gloves and drops off his meals.”

Completely transparent during an outbreak

During April, Highview experienced a COVID-19 outbreak. It was in Blair Creek House, where Ed lives.

“I was so impressed with how they handled it,” Lynn says. “They were completely transparent from Day One.” That transparency included frequent Zoom calls with families and detailed emails every day telling them the status. “Even when it was bad, we were reassured because we knew what was going on.”

Rather than simply telling families “we’re dealing with this,” managers at Highview made them feel like part of the team.

Lynn said that it was really hard sitting on the outside. But, because the people at Highview stepped up and made things work under very trying circumstances, it gave her confidence that Ed was being well looked after.

“I think there are a lot of retirement and long-term care homes who could learn a lot from how things were dealt with at Highview,” she says.

Sandra’s mom lives at neighbouring Cedar Creek House. At the time, Sandra worried that the virus might spread from Blair Creek House. But it didn’t. The frequent Zoom meetings and email communication gave her confidence that the staff at Highview “were doing their jobs very well.”

“My dad will be better off there than anywhere else”

As if things weren’t complicated enough for Sandra, ten days after her mom moved to Highview, her dad was admitted to hospital. He has dementia, like her mom, and can’t return home.

Sandra very much hopes that he’ll be transferred to Highview.

“People might think, ‘Well, why would you put him in a place where there was an outbreak?’ And my response to that is, it could happen anywhere. It’s no fault of staff, no fault of lack of procedures. It is a function of a horrible, horrible virus that we don’t know everything about. And I know that – because of what I’ve seen with my mom and how well she’s doing – I know my dad will be better off there than anywhere else. Pandemic or no pandemic.”

Lynn feels the same way. “The level of care, particularly for people with dementia, is fantastic.”

Can we protect our elders better in our own homes?

Lynn acknowledges that people may be reluctant to consider moving a family member into Highview during the pandemic. “There’s this sort of gut reaction that maybe we can protect our elders better in our own homes, but I don’t know that’s exactly the case.”

“Anyone of us could bring COVID into the house,” she says. “And what happens then? What. Happens. Then. That was the big factor for us in saying, ‘OK, we know COVID is there, but we know these people are professionals, and they are far better equipped to deal with those eventualities than we are.’”

Experts in dementia care

Plus, Highview is far better equipped to help someone with dementia.

Sandra’s mom had support from home care before she moved to Highview, but it wasn’t enough. “Despite the help my mom had in the home,” Sandra says, “she still wasn’t taking her medications, and the people we had coming in were not experts in the field of dementia so they didn’t have the skills to help my mom take the medication if she didn’t want to.”

“Anyone who places their loved one in Highview should have a feeling of assurance and confidence that these people are professionals,” she says. “They know what they’re doing, they’ve proven that, and I have every faith and confidence in them.”

“The level of care that residents get at Highview is far superior to anything that we’ve seen in the other retirement homes,” Lynn says, adding that although Highview may seem more expensive on the face of it, when you add up all the costs at other retirement homes for a comparable level of care, it’s right in line with anything else.

Re-opening to new residents

Highview Residences is pleased to announce that it’s once again welcoming new residents. “I’m really proud of our team,” says Katlynne Elgie, General Manager at Highview in Kitchener. “Our re-opening plan does a great job of keeping everyone who lives and works here safe and happy.”

For more information about Highview Residences, contact:

Highview Residences KW
Katlynne Elgie, General Manager
gmkw@highviewres.com
p: (519) 893-2374 ext 301

Highview Residences London
Hayley Gignac, General Manager
gmlondon@highviewres.com
p: (519) 472-8882 ext 201

My parents with dementia won’t move into a care home

What happens in Ontario when a person with dementia is unsafe living in their own home but refuses to move?

One day in December 2017, Dave got an email from his brother Pete telling him that their parents in Mississauga weren’t doing well. Pete had dropped by for a visit. He’d noticed they hadn’t been eating. They’d also been consuming a lot of wine.

“They had a wine cellar,” Dave remembers. “They knew it was dinner time and they’d get wine but wouldn’t make dinner.”

Their mom had been diagnosed with dementia years before. Their dad was her primary caregiver. His dementia came on more quickly.

Dave lived an hour away in Kitchener. He went to live with his parents for about a week. He realized they couldn’t look after themselves.

“They could get up in the morning,” Dave says. “They could get dressed. They could do all that kind of stuff, but they couldn’t make the meals, and they’d both lost a lot of weight.”

Worried about their deteriorating health, Dave suggested that they move into a home, but they refused to consider it. His mom went so far as to say, “You may as well kill me.”

Who decides?

Although Dave and Pete had a power of attorney (POA) for personal care for their parents, it didn’t automatically mean they could make their parents move into a care home against their wishes. In Ontario, someone with a POA for personal care is only allowed to make a decision about long-term care if a medical professional or evaluator finds a person mentally incapable of making the decision for themselves.

Which is why Dave and Pete got their parents’ mental capacity assessed by their parents’ family doctor.

According to Ontario law, the job of the family doctor wasn’t really to decide whether Dave and Pete’s parents were safe living in their own home. It was to decide whether they recognized the risks they were facing and understood the reasonably foreseeable consequences of not moving into a care home.

It’s a fine distinction, but an important one. Just because a person is in an unsafe living situation doesn’t mean they can be removed from that situation against their will.

In the end, the family doctor determined that because of their dementia, Dave and Pete’s parents didn’t have the mental capacity to make the decision for themselves. Dave or Pete were responsible for making the decision for them.

Now what?

Just because Dave and Pete were in a legal position to act in their parents’ best interests didn’t make what came next any easier.

“It was one of the hardest things I’ve ever done in my life,” Dave says. “I’m not sure how to describe the feeling that goes along with taking the people who raised you, the people who you looked to for guidance your whole life… taking their independence away from them. It’s almost overwhelming.”

Dave contacted Joy Birch, Chief Operating Officer at Highview Residences. Highview had just opened a home in Kitchener and could accommodate both his parents in one room.

Together, Dave, Pete, and Joy worked out a plan for moving Dave’s parents into Highview that would cause the least amount of distress for everyone.

“We recognize that when people move into Highview it’s an emotional day,” Joy says. “For the person who’s moving in (particularly if it’s not their idea), but also for the family. We do everything we can to make the person feel welcome and the family feel supported.”

“Highview’s been amazing,” Dave says. “I’d recommend them to anybody. Their staff is phenomenal.”

Looking back

Even though the decision to move his parents was a very difficult one, Dave is certain that if he’d left them in their own home, they would have died there. In fact, he wonders whether his family should have acted faster than they did.

“But the other side of it is my parents are both strong, independent people,” he concedes. “My dad worked his way up to a vice president of Imperial Oil, so there was no one going to push him around. It almost had to play out the way it played out.”

His advice for families in a similar situation?

“Don’t delay. Don’t just put things down to ‘well, people are old and they start to lose their memory.’ You need to recognize what’s going on and act fast.”

Considering dementia care in Kitchener or London, Ontario? For more information about Highview Residences, contact:

Highview Residences London
Hayley Gignac, General Manager
gmlondon@highviewres.com
p: (519) 472-8882 ext 201

Highview Residences KW
Katlynne Elgie, General Manager
gmkw@highviewres.com
p: (519) 893-2374 ext 301