Creating a Seamless Transition as you're Moving your Loved one to a new Setting
Your loved one is living with Alzheimer’s or some other form of dementia, and they are going to have to move into a setting that is more conducive to their well-being. As the primary Care Partner, it was likely up to you to make this difficult decision, and you may be feeling puzzled as to how to break the news to your partner and deal with the feelings that this process inevitably yields.
Edith Gendron, Chief of Operations at the Alzheimer’s and Dementia Resource Center in Winter Park, Florida, says you want to enter your partner’s world, while being careful not to create a false one.
While you may run into professionals who tell you to fabricate a story about why your mom needs to leave her beloved independent living facility, that method isn’t likely to lead to the best outcome for either of you.
“I’m much more into empathy, compassion, and authentic curiosity,”says Dementia Care Specialist Teepa Snow, whose company, Positive Approach to Care, is designed to support people living with brain changes.
Her approach might involve a conversation that looks something like this: “I’m going to ask you for a big favor, and probably, you’re going to hate it at first. I want us to try something different. I know it doesn’t feel like we need it, but we’re getting pushed to look for something different and I hate that this is happening, because I know you’re really happy here, but the reality is we’re not going to be able to stay here. There are rules and the rules are such that we don’t qualify anymore. And that doesn’t seem fair, because we thought it was a forever place. And this is really hard, but I want us to look at two options, and decide which of these two is less bad for us to go to, because I’m going to go with you, so I want us to figure out which one, and you get first dibs on which one you like better, and we’ll give that one a shot. I hate it because I wish we could stay here, but they’re saying we can’t.”
Determine who your loved one can talk to, should she want to make a case for staying put, and be sure that you outsource “the bad guy who’s making the rules,” Snow says. “You don’t want your mom, the human being who’s responsible for staying with the person to be the one who is the cop who’s calling it.”
This cop “can be way out there in government somewhere,” Snow says, and you can tell your partner that, “as hard as it is — I wish it were different — I can’t fix the law, so all we can do is find a place that we’re okay in for right now, and it is for right now. We can change our mind and move somewhere else if we don’t like it, but the reality is that we aren’t going to get to come back here for right now. As far as I know, we can’t come back. We can petition, we can keep asking.”
You could also enlist the support of a trusted medical or legal provider to have a conversation with your loved one.
For instance, if your spouse was always prudent when it came to finances, it may make sense to have a legal professional sit down with her.
That conversation might look something like: “Your resources are such that if you stay in this setting, you’re going to use up your resources really fast. Because we might need those resources, I think we need to look at an alternative, because we need to conserve those resources, being honest with you, I mean that’s true, and so we’ve got to use your resources better.”
Similarly, you could have your partner’s physician sit down and explain any concerns about her health.
“You need somebody who gets the perspective of the person living with dementia and who knows how to support somebody through this horrible transition for them, because they’re losing their safe space that isn’t safe anymore. But they’re not getting that,” says Snow. “They may very well be unable to understand it’s not safe anymore, and so it has to be reinforced and reinforced and reinforced in a way that they can accept it.”
If you anticipate resistance, you may consider waiting to share this information until as close to the move-out date as possible. On the other hand, your loved one might need more time to digest the change, and so you’d want to have this conversation sooner.
Regardless of when you deliver the news, you’ll want to make sure your partner has some power in choosing her new home, while, at the same time, avoiding the pitfall of touring every potential facility, which can become overwhelming for everyone involved.
“We need to think of ‘this or that,’” says Snow. “These are the two options we have.”
“If you are going to move your person into an assisted living facility, you have to have strong connections there,” Gendron adds. “You have to feel good about it. You have to feel like you’re really wanted.”
It’s really important to assess how your needs are going to be met when your partner moves into their new home as well, Snow says.
She suggests asking yourself: “In this new environment, what am I giving up and what am I keeping? And do I have space and time for me?”
Once the moving conversation has happened, and the new home has been selected, you’ll want to determine how to set up the new space.
“There’s two routes to consider,” Snow says. “When we move into the new space, we make it look very different. It looks like a hotel. It doesn’t even look like our space. Maybe just a few little things that are ours. The rest go into storage for right now, because it can’t look like where we’re staying. It’s just a temporary thing for right now.
And the other end is to make it look so similar — the bathroom is in a similar location, the bed is in a similar position, the window is pretty much where it was before. So many things are the same, so many elements and visuals and relationships are the same, same side of the hall, same this, same that. There's less awareness of a difference, and so it highly varies as to which people prefer.”
Only you can choose the best approach for your loved one, based on your knowledge of her habits and preferences. You can leverage this knowledge to make her new home as comfortable as possible.
For instance, if it is no longer safe for mom to operate a stove, but cooking meals for her family was incredibly important to her, you want to make sure her new space includes the appliance, with fail safes, Snow says, so that it can be used when you are there to cook with her.
“So, for the new environment, being very tuned in to what’s dangerous, what’s risky, what potentially could be annoying,” Snow says. “We try to look at that before we get there and move into it, and as we’re coming into it, then we may have to do some adjusting.”
And if you’re trying to reduce behaviors (such as spending excessive time watching television) you might use the move as an opportunity to try something new.
“Maybe the recliner doesn’t make the transition,” Snow says. “We have a chair but it’s not the recliner right away and we say, ‘You know what, they have some recliners out in this other area. Come and check them out, see what you think.’ And if it’s ‘No, I’d rather stay in my room and lay in my bed,’ then maybe we need the recliner and the TV, but maybe the TV doesn’t stay on the whole time.”
When it comes time to the moving process itself, you’ll want to avoid involving your partner too much.
“It’s overwhelming to see things packed up and put in places,” Snow says. “And they start to get overwhelmed by the whole ‘move’ scene. So being involved elsewhere when most of it gets shifted (is critical).”
And if you’re finding yourself navigating your own feelings of sadness, loss, and guilt, it’s important to honor and address those emotions.
“The loss accumulates. If you use the metaphor of your shoulders, it keeps building and building and building on your shoulders, and we can’t set it down. There’s no final resolution throughout this entire process because there’s always some other brain change that manifests as loss,” says Gendron. “Here we teach: name it, recognize it, work through it. Working through it usually requires some recognition of what mourning ritual works for you, comforts you. Find something that is comforting to you, that acknowledges that you’re experiencing emotional distress as a result of grief, and do something to resolve just that little piece of the grief.”
And if you’re looking for additional support, and community, while on this journey, reach out to the Alzheimer’s and Dementia Resource Center in Winter Park, and take advantage of their free care coaching, workshops, and support groups, filled with people just like you.
Above all, give yourself some acknowledgement for all the work you’ve done, and know that, regardless of how it feels, you are not alone.
Simple Solutions to Activate the Parasympathetic (Rest & Digest) Response
When you witness your loved one navigate challenging brain changes, you may find yourself in fight-or-flight mode more often than you’d expect. This is that panicked, activated mode our bodies slip into (known as the sympathetic response) when we are stressed. Think: racing heart, sweaty palms, upset stomach. We are essentially preparing to run away from or face a perceived physical threat. The sympathetic response is an essential part of our autonomic nervous system, but it’s essential that we don’t get locked into this state for extended periods of time. So, while it’s completely normal to feel anxious, or, at times, even overwhelmed, while navigating the tough calls, losses, and incessant shifts that crop up with Alzheimer’s or some other form of dementia, it is up to us to do the work necessary to soothe our systems and activate the parasympathetic response, which is often referred to as the “rest and digest” state. And no, you don’t need to book an expensive vacation, or carve out an hour-long yoga session every single day (although, if you have the resources, go for it!) All that’s required is two to 10 minutes of your time, and the willingness to try something new.
You’ve no doubt heard about the slew of benefits that accompany a consistent meditation practice. You’ll feel better, sleep better, and have an easier time navigating stress. And, according to Leslie Laws, a 500-RYT certified Astanga yoga teacher with a PhD from the University of Missouri-Columbia, you only need two minutes, five days a week, to begin to see the benefits in your day-to-day life.
“It’s becoming keenly and precisely present and aware of where you are right now, in this moment, and who you are with, being fully present and alive to that person, or to that moment,” Laws says of mindfulness in a recent Informed Aging podcast. “There are several components in the definition of mindfulness, but that’s one of the core concepts of mindfulness, is that the practice of mindfulness is the practice of learning to train our mind to hold the focus on a specific object of attention, so that we’re improving our capacity to pay attention, and be present.”
You can listen to the full episode of that podcast, below.
We’ve also included a guided meditation for you to listen to, below. This was recorded by Jess Richardson, an Orlando-area yoga instructor, writer, and self-expression mentor who works with older adults living with Alzheimer’s or some other form of dementia.
Did you know that practicing gratitude releases feel-good hormones like dopamine, serotonin, and oxytocin? In addition to feeling good, this self-care technique will also improve your quality of sleep, lower your blood pressure, and support your ability to connect with others.
In an article for Greater Good magazine, author and professor Robert Emmons defines gratitude as a two-part experience.
“It’s an affirmation of goodness,” he writes. “We affirm that there are good things in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life. The second part of gratitude is figuring out where that goodness comes from.”
And this is another practice that requires only a few minutes each day, Laws says in a recent Informed Aging podcast.
You can purchase a journal like this gorgeous one created by Laws, or simply keep a daily list of moments you enjoyed from the previous day.
Equal ratio breathing, or box breathing, is one way to quickly de-stress from a particularly draining day. One study showed that this kind of breathing, when done in 30-minute increments for 12 weeks, has the potential to lower blood pressure, stress, and heart rate.
So, how does it work? You essentially make all parts of the breath equal in count. So, inhale for seven beats, hold for seven, exhale for seven, hold for seven. Richardson created a short, introductory video that explains the practice in greater detail.
Regardless of which technique you implement first, be proactive about your own self-care practices. You deserve to feel good, too. If you’d like more guidance on how to get started, consider scheduling an appointment with the Alzheimer’s and Dementia Resource Center, in Winter Park, or attending one of our monthly Meditation and Mindfulness classes, hosted by Laws. These are facilitated via Zoom, so you don’t have to be an Orlando local to attend. Thank you, as always, for the work that you do!