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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 is crucial. 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, Activation Coordinator here at Highview Residences in Kitchener.

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.

Considering dementia care in Kitchener or London? Contact Joy Birch at Highview Residences  joy@highviewres.com or 1-844-700-3734. She’d be pleased to offer you advice and support.

 

First anniversary of Cedar Creek House opening

One year ago – on Thursday, October 24, 2019 – we opened Cedar Creek House, our second residence in Kitchener for people with Alzheimer’s disease and related dementias. To mark this anniversary, here’s an excerpt from the article we posted for opening day. Although the world is very different in 2020, 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 or to book a tour, visit highviewres.com or call 1-844-700-3734.

Highview’s living spaces are designed with intention

Our own Joy Birch shows how important the design of living spaces is to dementia care. Thanks to Women in Healthcare – Greater Toronto Area Chapter for the invitation to speak as part of their panel on enhancing wellness in healthcare spaces.

via YouTube Cutter

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 London, email Joy Birch.
For information about Highview Kitchener, email Katlynne Elgie.
Or call 1-844-700-3734.

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,
contact Joy Birch at
joy@highviewres.com

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.

Get in touch with Joy Birch at joy@highviewres.com or 1-844-700-3734. She’d be pleased to offer whatever advice and support she can.

 

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.

 

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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? Contact us at Highview Residences. We’d be pleased to offer whatever advice and support we can.

Engage at every age

We are excited to introduce intergenerational activities at Highview Residences

On January 2, our residents enjoyed reading stories with the youngest generation.  The children were able to practice reading to a group and to individual residents.

The residents were so pleased to spend time in the innately joyful presence of children.  There were many smiles and a feeling of pride.  The residents were able to connect with the children and celebrate their accomplishments as they completed their books.

At Highview Residence we are excited to include more intergenerational programming.

Indepth CBC Interview with Kait Carnegie

Kait Carnegie, Activation Co-ordinator of Highview Kitchener, was recently interviewed by the CBC to discuss the importance of visiting loved ones with dementia during the holidays. Click here to read the full article. 

Gift ideas for someone with dementia

If someone on your holiday shopping list has dementia, here are a few tips on how to find a suitable gift.

Early stage gifts

If the person is in the early stages of dementia, consider gifts that will keep their minds active or that will make life easier for them. Keep in mind that just because a person has dementia doesn’t mean their interests have changed.

• Books and magazines on topics that interest them. If reading has become a problem, try an audio book.
• A personalized music playlist loaded on a music device. Hearing favourite tunes from their past will stimulate memory and increase brain function.
• DVDs of favourite TV shows or movies. If they use a streaming service, you might want to buy them a gift card for that service.
• Personalized scrapbooks or photo albums will help them hold on to memories of significant people and events in their life.
• Puzzles and games are good for stimulating the brain. They might be simple or more challenging, depending upon the person’s cognitive abilities.
• A phone with large numbers and simple features may be easier for them to use than their current multi-feature, cordless phone or cell phone.
• Introduce them to an activity or exercise program that will keep them physically active and socially connected. Offer to go with them the first time or on an ongoing basis.
• Make a gift of your own time. Take them out for coffee, or shopping, or a show. If you live nearby, consider making it a regular date.

Mid-to-later stage gifts

If the person is in the mid-to-later stages of dementia, some gift ideas from the list above can be adapted.

• Books and magazines – Choose shorter stories. Read aloud to the person.
• A personalized music playlist loaded on an iPod – Familiar music can still revive old memories and improve mood, even in the later stages of dementia. Gentle music and calming sounds can have a soothing effect.
• Personalized scrapbooks or photo albums can still be used as a topic of conversation – and thus promote socialization – particularly if names and ages of people in the photos are labeled.

In the more advanced stages of dementia, a person may develop restless hands, particularly if they’re used to doing crafts, working with tools, or playing a musical instrument. At this stage, some of the following gift ideas may be a good choice.

A twiddlemuff is a hand muff with soft bits and pieces attached inside and out that provides an entertaining way for the person to occupy their hands. You can buy one from a specialty store or knit one yourself.
An activity box. For instance, a small toolkit-sized box made up a several small doors with locks that can be latched and unlatched.
A set of PVC tubes with connecting joints. The person can use it to build all sorts of interesting structures.
A lifelike stuffed dog or cat. The person may find this calming, particularly if they’ve owned a pet in the past.

Do you have other questions about supporting someone with dementia? Get in touch with us at highviewres.com. We’d be happy to help.