Exploring Next Steps in Care

Crista Ellis 00:00:01
Hello and welcome to the Parkinson's Foundation Wellness Wednesdays webinar. I'm Crista Ellis, Community Engagement Manager with the Parkinson's Foundation. The Parkinson's Foundation is a dedicated nonprofit organization committed to enhancing the lives of those living with and impacted by Parkinson's disease. We focus on improving care and advancing research, ensuring that all of our efforts are closely aligned with the needs and priorities of the Parkinson's community.

Today's webinar focuses on exploring the next steps in care. Care needs in Parkinson's change as symptoms progress. This program will provide you with tools to help you decide when it's time to ask for outside help. We'll learn what we need to know to find the right kind of caregiver to meet your needs, and we will discuss the next steps to consider for care as your Parkinson's advances.

PD Health at Home is presented by the Light of Day Foundation, whose generosity has made this programming possible. Thank you, Light of Day, for your support of the Parkinson's Foundation's mission.

To begin our presentation, I'd like to introduce our presenter for today's webinar. Erin Cecchi is a licensed clinical social worker with over 10 years of experience in health care. She has worked at some of the leading medical institutions in the Midwest, where she gained valuable hands-on experience working with individuals with memory loss and cognitive challenges. Erin's background includes being the lead social worker for the general neurology and neuromuscular departments at Rush University Medical Center and serving as the senior program coordinator for Northwestern's Parkinson's Disease and Movement Disorder Center.

She's currently the dedicated social worker and co-program coordinator for the University of Michigan's movement disorder program. Her entire career has been dedicated to working with older adults, individuals with neurological conditions, and caregivers. Her favorite part of her work is being able to qualitatively connect with and work alongside individuals and families. She holds a Bachelor of Social Work from Michigan State University and a Master of Social Work from the University of Michigan. Erin is licensed in the state of Michigan. Erin, thanks so much for sharing your time and your expertise with us today.

Erin Cecchi 00:02:27
Thank you so, so much for having me. I'm going to share my screen now with everyone.

All right, thank you. As Crista said, today our topic of focus is exploring next steps in care. When we talk about care, a lot can go under that. It's what types of care are available, when do we seek out care, how do we seek it out? It's a lot to unpack, and for the purposes of today, we're going to be focusing on identifying when we need care, what the indicators are, how to seek it, and dipping our feet into the different types of care.

We could spend our whole hour on each different area of care, but we're going to be talking about how to focus on how to find care and how to identify your needs so you can know what type of care is available and how to find that.

No personal financial disclosures. A note that the information and materials in this presentation and listed on the websites on the slides are intended to promote general understanding of related resources and information. It is not to be a substitute for professional medical, therapeutic, health care advice or counseling, and the presentation does not encompass all available information and resources. It should not be taken as an endorsement by the Parkinson's Foundation or any of its partners, nor discrimination against any similar resources, organizations, products or services not mentioned.

Today, our objectives are to learn when it's time, what are the indicators to seek out more care, how do we seek out outside help, what questions to ask to evaluate your own situation so you can identify what your care needs are, and understand some of the different types of care and support available.

Some planning for care reminders. As we embark on today's conversation, and as you carry on and have these conversations on your own and amongst family and friends, it's important to have some words of wisdom in mind and to have these conversations early and often. That can take a lot of the weight and overwhelm from them and chunk them up so it doesn't feel like things are coming to a critical mass and that we're having these conversations when things go from zero to 180, when we're completely independent, can take care of ourselves, and then needing to plan for care at a time where, oh, I need a lot of help surrounding these things.

It can be helpful for what things do I need in the here and now? What might I need down the road a little bit and then further down the road? And checking in, have situations changed? Does that affect the care plan? What outside help may or may not be available? When having these conversations, it's important to consider the needs of all, meaning considering the unique needs, strengths, limitations, values and preferences of everyone involved.

Erin Cecchi 00:05:58
It could be the person with Parkinson's disease, the person with a different neurological and related condition, the person caring for the person with the condition. Everyone's needs need to be considered. And while it's often difficult to do when we talk about planning for care in the future, it is important to avoid making promises. What I mean by that is often when we talk about planning for care in the future, there are these understandable requests to promise you won't put me in a nursing home, or similar facility or language.

While we know where that comes from, it's the desire to remain as independent in your own home, as comfortable and in line with who you were as a person throughout your whole life, we can't anticipate the future. We can't anticipate future needs. It can be a really, really difficult thing to ask someone to promise when we don't know what the future care situation is going to be. Because of all this, emotions are to be expected. We're talking about tough stuff, and emotions are going to come up. As uncomfortable as they are, they're to be expected, and it's okay to just sit with them.

I just wanted to frame the conversation with those reminders before we continue.

Erin Cecchi 00:07:23
Some reasons people may not ask for help. I think it's important because we're talking about when to find help, when to seek it and how to find it. I think it was first important for me to allow us to spend a couple of seconds reflecting on, well, what are reasons people may not ask for help? And they're valid ones, right? There are some beliefs about who we are. I'm self-reliant, I'm independent, I've always done for myself. Asking for help is less than, and I don't want to be a burden, or if I ask for help, I can't handle someone saying no, right?

We have our own image of ourselves. We have Rosie the Riveter on the screen. To me, she kind of just represented this self-empowerment, I can do for my own. Obviously, she represents much more than that. It just had this, I can do it on my own. But actually, as I think Rosie would support, asking for help is a strength. There are understandable barriers that may be at play that prevent people from asking for outside help.

Lack of trust is a big one we hear, especially when we're talking about hiring strangers, outside caregivers. Well, we don't know them. There are instances where people are unfortunately exploited when bringing someone into their home, although there are measures that we can put in place to prevent that. Fear of losing control. This is huge and understandable. This is very much where the emotions come up. We know that there are cultural and societal norms about what it means to ask for help, about how, no, I need to rely on myself. This is the only way to be. And sometimes it's difficult to identify needs, so we don't ask for help because I don't know what kind of help I need.

It's helpful to reflect on that because being able to appreciate what might be barriers can also help us move past them. Well, where am I getting stuck? Is that where I need to start? Maybe, yeah, I have a lot of needs, but maybe I need to work on just getting past my lack of trust or what have you.

When to consider outside help? Many, many indicators could be a sign that outside help is needed. This is the case if you are a person with Parkinson's or a similar condition caring for your own self, or again, you're someone else caring for someone. These are just several factors that may play into, okay, is this an indicator outside help is needed?

When physical limitations are present, to no fault of our own as we age, as the condition progresses, our bodies are affected in different ways. A great example is as Parkinson's progresses, it may become more difficult to get in and out of bed or up and down from a seated position. Well, if you're caring for someone who is experiencing that difficulty and you're having your own physical limitations, there may come a time where you're not able to physically lift someone up and down from a seated position, and so outside help may be physically necessary.

We know that providing care, even caring for yourself, comes at an emotional and mental cost. Doesn't mean it's not rewarding in its own right, but it can be taxing. Are you feeling more exhausted? Are you feeling depressed? Anxious? Are you feeling so depleted that you cannot continue as is, and we know outside help is necessary? Or are the needs just increasing that are surpassing what one person is capable of doing? It's understandable. One person can only do so much. Outside help inevitably may be needed.

Are there safety concerns present that are prompting outside help? Sometimes we know, depending on the condition, people may experience increased falls, wandering or inability to take medications as prescribed, so we need more oversight.

Erin Cecchi 00:11:53
Again, one person can only do so much. Your personal well-being, this is every aspect: your physical, your mental, your emotional, your spiritual, your occupational health. How are those areas being affected by your role as being a caregiver or caring for yourself? Is that coming at too much of a cost to where, okay, things are getting a little uneven, you need to bring some outside help in? Again, burnout. Are you showing more signs of burnout? Are you not sleeping? Are you not eating? Are you in a constant state of hypervigilance, agitation? Your mood, you can just feel yourself on edge. These are all signs, again, that maybe outside help is needed.

Do you just not necessarily have the skills or knowledge required to complete a certain task? Again, no fault of your own. We all have strengths and weaknesses. We all come from different backgrounds, and sometimes we do need a professional or different pair of eyes to help us. And family support, depending on the situation and the larger environment, is family support, while amazing, just not sufficient enough because there's just not as many people or as much time needed to help? Do we need to go outside of the family for help?

Those are just some indicators of when we can seek outside help. In evaluating and doing this self-assessment of what type of help do I need, what area do I need it in, it can be helpful to do this sort of health and wellness assessment.

On the screen, you'll see something called a wellness wheel, which there are many, many iterations of if you look online. Some of you might be familiar, but essentially it's a wheel that you can see encompasses really important aspects of our life and what makes us humans, what impacts our well-being and daily functioning. It's our emotional, our spiritual, intellectual wellness, physical wellness, environmental, financial, occupational, social. All of these different aspects of life go into our day-to-day, who we are as a person, our values, our preferences. In evaluating when it's time to consider help, well, what area do I need help in? What's going well? What's going not as well? What would I like to improve in?

Asking yourself, as a starting point, some of these reflective questions can be helpful. Kind of going through each prong, I guess you could say, of the wheel to say, my physical wellness, what's going well? What would I like to improve on? What's going well? Let's say I'm Kara, I'm a person, I'm a caregiver and I'm caring for a spouse with Parkinson's.

What's going on? I'm still getting my two walks a week in. What's not going well? My back is really hurting because I'm finding it more difficult to get my spouse on and off the toilet. So, okay, what would I like to improve in? Maybe that area is where I want to start. These broad-stroke reflective questions can help us narrow down a little bit the areas of where we want to concentrate. Further, we can ask some more probing questions to really narrow down, okay, am I at a time where I need to consider outside help? In what area?

Erin Cecchi 00:15:39
Am I physically able to handle all the caregiving tasks required? Do I feel overwhelmed, stressed or anxious? Am I able to find time for self-care and activities that recharge me? Do I have enough time for my own needs, work or other obligations? Do I feel confident in managing all aspects of care required? Am I able to maintain my relationships and social connections? Are there signs that the quality of care I am providing is declining due to my own limitations? Am I neglecting my own health needs or experiencing increased stress-related symptoms?

Is there tension or strain within the family related to caregiving responsibilities? Or are there aspects of caregiving where I feel like I could benefit from additional help? You can see that a lot of those questions mirror those broad-stroke categories of when it's time to consider help. As you're going through these questionnaires and self-assessments, and again, you can probably find iterations of these online, I think it's also asking what's going well, what's going not as well. If you're coming up screening positive more and more, I think it's even more of an indicator that outside help could be needed.

Erin Cecchi 00:17:00
At this point, we've considered when it's time to get help. I've come to a point, I've done my self-assessment, I know that I'm ready to seek outside help, but what type of assistance is available? This slide reviews some of the broad-stroke categories of care and assistance available. In several slides, we'll dig into a few of these. Because of just the hour timeframe, we won't be able to dig into all of these, but it's helpful to understand, oh, okay, I think that's a type of assistance that Erin once said was available.

Informal support being one of the main types of assistance, this is the care that's provided by family, friends, neighbors. Informal support is the backbone of caregiving in our country. In-home assistance is a category of non-medical care. This is when we think about caregivers, hired professionals coming in, helping with the day-to-day activities. Home health is skilled medical care. That could be a nurse or another similar medical professional coming in and giving medical care. Durable medical equipment sometimes is a type of assistance that's needed. Sometimes home modification. Maybe we need to widen doorways or make sure everything is accessible on one floor.

Adult day service is somewhere that you could go during the day to be engaged. If you're caring for someone, that gives you a little break, which is the category of respite, allowing the caregiver to get a break. Type of assistance given through different care facilities. Obviously, some people may need to seek care from a hospital. Then palliative care and hospice care are their own two categories of care that can be provided. Sometimes palliative care being at any stage of illness, hospice care being more toward end of life.

Again, those two are such an important topic. Parkinson's Foundation has done numerous presentations just on those two alone, so we won't be able to unpack those, but I wanted to highlight those as such important types of assistance. Then we're going to be able to dive in a little bit to some of the mainstays for types of assistance.

Again, it's the okay, we know help is needed. We know the type of assistance available, but how do we find it? Which is a tall task in and of itself. There are numerous ways and inroads that we can follow to find help. Really, the best way is asking for recommendations. Are you connected to a neurology office where you can ask them? Are you connected to an organization, a support group where you can ask others for recommendations? Friends, families, neighbors. Really, the personal recommendations are sometimes the strongest source of help and referrals.

Contacting your insurance company to find options for outside help, depending on the type of care you're looking for, can be another great option. There are great online platforms and tools available. For example, Medicare.gov's Care Compare tool is a wonderful place that you can go. You can enter in your ZIP code and say, I'm trying to find a home health company with a four-star rating or above that serves this area, and it will populate information. They also can show you a list of facilities in your area.

Erin Cecchi 00:20:40
Sometimes there are these great online tools that can kind of be a one-stop shop to find care. Care.com is one that a lot of people utilize to get private paid caregivers. Area Agency on Aging, they are great agencies across the country that are dedicated to solely helping individuals with disabilities and older adults. These are administrators of a lot of programs, kind of resource hubs, so to speak. Those can be great, great places to find help.

How to find help: asking or hiring a specific friend for a task. So, hey, neighbor, will you come, I'll pay you 20 bucks to mow the lawn twice a month, or what have you. Geriatric care managers are another great way to find help. Geriatric care managers are private-pay care managers in the community that you can hire, who have the expertise and resources in care planning, finding care, implementing care, employing care and really overseeing care. Depending on everyone's situation, that might not be accessible, but for those it could be a very great option.

Looking for volunteers is another good avenue to find help. Reaching out to high schools, nursing schools, colleges, asking if students are in need of fulfilling volunteer hours. Create the Good and Elder Helpers are two specific websites that you can go on. You can actually post to be a volunteer and then also post your volunteer needs and try to find helpers in your area.

Again, a lot of great community resources. There are community organizations such as the Parkinson's Foundation. We have the PF PD Hotline Helpline that is instrumental in linking people with help in their area. There are great local senior centers. Faith-based organizations is another great one to find help. I've had people I've worked with have success in talking to their faith community, posting in the bulletin needs, and other members of that organization or faith-based community really rising to the occasion and lending their time to help others.

Another creative way is setting up a website and posting your care needs. CaringBridge is one such website. It is a platform that allows you to post updates, talk about how you're doing, your health status, what's going well, what your needs may be. You can actually post care needs, engage others, and others can even sign up to help with specific tasks. This is just a lot of varied ways to find help. This is where a lot of creative problem-solving comes in.

Even when we know what type of care is needed and how we could potentially seek it out, it can be overwhelming. It can help to narrow down options. On this screen is one strategy I've employed personally and with folks I've worked with to help narrow down what is needed now. Let's get a global overview of what tasks do we need help with, what does that mean, and who or what could help.

Erin Cecchi 00:24:21
As you can see on the screen, the task: I need help with shopping. What does that mean? I might need shopping for groceries, clothes, so on. What can I use? Well, I'm going to use a mobile app or website that I can pick my groceries up at. Or again, this is where you do brainstorming. Well, every Monday, I'm going to set up an order and my daughter's going to pick it up for me or bring it up. Or my neighbor's going to go to the grocery store Tuesday afternoons. I'm going to go with them.

As we granularly write down the tasks, then we can see, okay, who or what could help with everything? Not only can this help concentrate on what are the main needs and tasks at hand, but it kind of gives us a global perspective. If I am listing down every task or potential need and just brainstorming who or what I can think of, I can then see, oh, am I relying on one person or one entity too much? Who else can I ask for help?

You can see, we don't necessarily have to just focus on the day-in-and-day-out tasks. Again, we are holistic, complex individuals. Maybe my need is I need to concentrate on my hobbies and interests, engaging in activities that are enjoyable for the person. Who or what can help? Where can I get that outside help? I'm going to ask a friend to find an art class that we could attend together. This is just one strategy I think that can help to narrow down what the needs are and who or what I can go to and access to meet that need.

Erin Cecchi 00:26:11
Now we're going to shift a little bit. The next several slides are going to dig into some examples of specific types of assistance. Because we know when we talk about care planning, and we know that needs increase over time for people with Parkinson's as well as many other conditions, the day-to-day tasks are what often is most needed. It's the help with the bathing and the dressing and whatnot. In-home assistance is one of the biggest types of outside help available.

When we say in-home assistance, this is also known as personal care, attendant care, non-medical care, companion care. It can go by different names, which can make it confusing, but when we talk about this type of assistance, we're talking about the need for help with eating, bathing, maintaining personal hygiene, getting dressed, using the restroom, getting around, basic mobility, meal preparation, transportation, housekeeping, laundry, shopping, or just companionship or supervision, depending on the situation. If someone just kind of needs standby assistance or eyes and ears on them, despite being able to do things for yourself. This is a main type of care.

Cost varies greatly. If you're hiring through an agency, this can go, depending on where you're at in the country, this is going to be widely, widely variable, but $20 to $40 per hour, give or take, depending on the type of care and how many hours of care you're receiving. This is kind of the bread and butter in terms of the type of assistance that most individuals access at some point. The coverage of this type of care, most of it is private pay.

In addition to being provided by the informal supports, the family, the friends, the neighbors, in many states, they have the state Medicaid or waiver programs that can help pay for some type of this assistance. The VA, for qualifying veterans, and long-term care insurance plans often cover this type of assistance. And again, unfortunately, Medicare does not pay for this type of day-to-day care assistance, although some Medicare Advantage plans have been carving out a slight benefit to help in this area.

Another main category of assistance is home health. This is the medical care. This is the nurse, physical therapy, occupational therapy, speech therapy, social work, home health aide that can come into your home. To qualify, if it's being covered under insurance, someone must be considered homebound, meaning that you need the help of another person or a device such as a cane, a walker or a wheelchair to leave your home, and that it's medically necessary that your condition would get worse without this type of care. It is covered by Medicare.

This is where it gets confusing with terminology because we just talked about in-home assistance and now I'm talking about home health. Even within the medical or health care community, people are going to call it different. But when I say in-home assistance, it's mainly the non-medical. Home health is the specific term to talk about this type of care, this skilled medical care that is covered.

Medicare doesn't have visits in terms of caps or limits throughout the year, but this type of care cannot be provided, or rather I've never seen it be provided, continuously throughout the year. Usually, it's courses of home health, like four to six weeks at a time. If your doctor thinks that you would benefit from physical therapy and occupational therapy, that physical and occupational therapist is likely to come visit your home one to two times a week, 30- to 45-minute visits for four to six weeks at a time. A month or two potentially break in between, and then you might be able to do another course in the future.

Again, this is another great type of outside help that is available and covered by insurance. It's just limited in the scope in that it is skilled care in nature.

Erin Cecchi 00:30:55
Adult day care. These are places where individuals can go that provide a variety of services, activities, meals, health monitoring, and some offer transportation to and from. When we're talking about care planning and getting outside care, often it's bringing care in the home. Well, this option is for someone to go somewhere, for the person who's participating in the program to become engaged. That also allows the caregiver to get a little break as well. Cost varies greatly. Again, it's going to be variable across the states, $80 to $100 per day, with coverage mostly being private pay. When I say private pay, just meaning that you are paying using your own finances.

Some state Medicaid programs might cover. VA, long-term care insurance potentially could offer this benefit, and often organizational or community grants. Sometimes there may be a specific Parkinson's-related organization in your area that could provide a grant to pay for someone to go to an adult day care center.

Then another, when we talk about in-home care and out-of-home care, assisted living being an option that is out of the home. When outside help is needed, sometimes that means that we're having to talk about transition from receiving care in the home, whether that be with informal or paid skilled support, to having to transition to out of the home, and assisted living being one of those options. This is a facility, a long-term care option that provides personal support services such as meals, medication management, bathing, dressing, transportation.

Erin Cecchi 00:32:53
The care here is not as intensive as that offered at a skilled nursing facility, and we're going to go over that in a couple slides. This is your own apartment or shared apartment. Often, they have kitchenettes and dining rooms potentially within a larger facility. You have this level of independence with community because you have people checking on you, you have people in sight. It can be a really good medium between keeping independence while needing a little extra help. Again, cost varies greatly, ranging from $4,000 to $8,000 a month.

Then à la carte services will increase costs. What I mean by that is that often when we talk about the base cost of $4,000 to $8,000, that's going to include room and board, three meals a day maybe, and it could include their transportation benefit. But as someone's needs increase, they may need more assistance with check-ins or bathing or dressing, and sometimes those services can be an extra cost. Again, coverage is private pay mostly.

As you'll see, the theme, unfortunately, is that a lot of this is utilizing someone's own finances. But that is why we have, across the different states, different programs to serve as a fail-safe to help people who obviously are not always in the same financial situation as others. The VA, long-term care insurance, and again, this assisted living type of care is not paid for by Medicare or health insurance.

Memory care is another category of assistance. This refers to a specialized type of care designed to meet the needs of individuals with memory problems. These memory care units or facilities can be part of an assisted living or skilled nursing facility. They are really designed and structured to help support individuals who are experiencing any kind of memory problem. They have trained staff, and they have specific activities that are catered for people who may be experiencing difficulties in these areas. Again, costs vary greatly. Just because of the needs of the population, it tends to be a little more expensive, with the range being more $6,000 to $9,000. Again, coverage is similar to what we just went over with assisted living, in that most of it is private pay.

Erin Cecchi 00:35:30
Finally, the main large category of assistance outside the home is what is called long-term care or skilled nursing facility care. This is, again, not my favorite terminology, but what we think of when we hear nursing homes. This is for individuals who require 24-hour monitoring and medication assistance. As we know with people with Parkinson's and other progressive conditions, needs will increase, and when outside help is needed to such an extent, sometimes, no matter how much care we put in the home, for various reasons and no fault of anyone's, it's just not sufficient to meet the needs. Transition to a facility that can provide the 24-hour care necessary is what needs to be pursued. The average cost of a semi-private room, meaning a shared room, is $300 a day. A private room is $350 a day.

This is where it gets a little tricky with coverage because, again, Medicare does not pay for any kind of long-term care. However, Medicare will pay for a short-term stay in a subacute rehab that is within a skilled nursing facility. That's where it's, if you're going there to live forever in a facility, Medicare will not pay. If, let's say, you go to the hospital and need to go to rehab after, in a facility before you go back home, Medicare will pay for that.

Like it says, coverage options for subacute rehab in a skilled facility may include Medicare, and it will cover a subacute rehab stay after a hospitalization lasting at least three days. Some Medicare Advantage plans actually waive that three-day rule, and other insurance plans will offer some level of coverage but have their own carve-out in terms of rules.

Coverage options for long-term care in a skilled facility, meaning that this is where the person is going to live and remain, would be private pay, long-term care insurance, VA, and potentially Medicaid, depending on your state. Like we said, as we're reviewing these numbers, these care costs can understandably add up fast. It's not abnormal or uncommon for some people's financial situations to not be able to pay for this type of care. So this is where most states' Medicaid programs can come in.

If someone's finances exceed the criteria to qualify for Medicaid, individuals usually have to pay for care using their own money until they spend down their money to where they would qualify, and then the state would pick up the cost.

Again, thank you for going through that with me, the different types of care. In closing, I just wanted to end with some gentle reminders. This is a difficult topic. It's overwhelming. I feel like we can only scratch the surface in some of these presentations. Like I said, we could dig in so much on each little subject.

It is overwhelming, but just reminding yourself that asking for help is a strength. Needing outside help is not a reflection on one's own capabilities or values or the amount of care that they're providing someone else. Sometimes these are situations where so much is out of our control, and what we can control is asking for help. It very much is a strength. Again, to be expected, emotions are going to come up during periods of change and transition.

When we're talking about lining up care, that is a huge change. The idea of having someone come in your home who you don't know, understandably, that could make you uncomfortable. Just appreciating that this is to be expected. What do I need to do for myself when those emotions come up is an important second question for yourself. This really does encourage us to practice flexibility, patience and self-compassion. Things are ever-changing, dynamic and complex.

I need to be patient with myself and others as we're lining up care. Maybe it works the first time, maybe it doesn't. Being self-compassionate in that, again, you are one person, and you are doing everything that you can. As a reminder, there are so many great resources out there to help support, the Parkinson's Foundation Helpline being one of them. Thank you all so, so much for joining us today. With that, we're going to hand it back over to Crista, who will facilitate the Q&A, and then we will hopefully be able to answer some of your direct questions.

Crista Ellis 00:40:58
Thank you so much, Erin, for offering us a really deep, comprehensive overview of what assistance could look like beyond those of us who are so privileged to have family and friends to support us through our advancing Parkinson's disease. Really appreciate you bringing those resources and those tools to us for this presentation today.

We got one question from anonymous. Oh no, this is from Meg. Thank you, Meg, for your question. She shares that her father has Parkinson's disease and currently is receiving daily home care. She's curious to learn about what indicators they might need to watch for that could lead him to receiving memory care.

Erin Cecchi 00:41:48
It sounds like this person that you're caring for is in home health, and you're looking for indicators where memory care would maybe be more appropriate.

Crista Ellis 00:42:01
Yeah. What do we look for to make that decision based on, okay, we have home care. At what point do we determine that my dad might need memory care?

Erin Cecchi 00:42:12
Good question. This is something that comes up because we know people with Parkinson's or various conditions may experience memory challenges along the way. Does it mean that everyone needs memory care? No. It's: do you feel like the care at home can meet the needs of the specific memory and cognitive challenges present? We know that forgetting medications, maybe that's something that a caregiver can step in and easily provide reminders or prompts, or maybe there is technology like the automated pill dispenser that can help.

But some symptoms that fall within this cognitive memory category can be such that outside help is needed, where, okay, no matter what level of in-home care we have, it just cannot meet this specific need. For example, with wandering, I think that can be one specific thing that can be extra difficult or challenging if someone is wandering or falling because they don't remember that their body doesn't work like it used to, and the caregiver is understandably just having so much difficulty keeping up with that. I think those are good indicators that memory care may be needed.

Again, just because someone has memory or cognitive challenges doesn't mean memory care specifically is needed, where you're having to go to a specific facility. I think it's: do the current resources at home meet the needs of what is going on in terms of the memory challenges? If not, I think that can be an indicator that maybe we need to seek some outside care via facility because they just have the resources and ability to care for people who have these extra challenging symptoms, who are in these situations.

Crista Ellis 00:44:17
Thank you for giving us those questions and almost taking a step back to really observe the situation and become knowledgeable in your own way to recognize we don't have the resources to support our loved one with Parkinson's. We need more help.

Erin Cecchi 00:44:35
Yes, and again, I know I said this, but I cannot reiterate it enough. Coming to that realization or conclusion is in no way a comment on the quality of care or one's own strengths. It's that these situations are such that we cannot be expected to be able to handle everything or know what to do. Again, that's why we have these various outside sources of help to step in.

Crista Ellis 00:45:08
Thank you for that reminder. I know how difficult it can be to acknowledge our bandwidth and our capacity and how that guilt can really start to nestle its way into our thinking when we're just not meant to do it all on our own.

Thanks for that reminder, Erin. We did get a similar question from an anonymous attendee, and I hope, for the person who wrote in about their 75-year-old father, that Erin was able to answer your question on when you should consider seeking more help. Appreciate that.

Gem is asking: where can we explore care assistant services in our local areas? Is there a resource we could offer Gem to look into local resources?

Erin Cecchi 00:46:01
Yes. If I were to say one place to start at, it would be your local area agency on aging, which is a broad term, a general term, to describe those agencies that specialize in providing care, programs and resources for older adults and individuals who are younger with disabilities. I would say using Eldercare Locator if you have access to a computer and internet. If you can type in your search bar, Eldercare Locator, they will help you find your local area agency on aging.

That would be the best place to start. There are local area agencies on aging offered in different regions across states. They're going to have that geographic knowledge of what resources are available in your specific community. Again, they also administer a lot of great programs as well. So not only being a resource referral hub, you might even be able to access programs that could help pay for care.

Again, I can't give you, hey, go to this specific agency, but what you need to find is your local area agency on aging. Probably one of the easiest ways you can find that is by using Eldercare Locator, which is a government site that you can use to find where your local agency is.

Crista Ellis 00:47:33
Thank you, Erin. Someone from my team, either Jenna, Jenny or Laura, if you would put that in the chat for our community here. We'll also include that link in the email that you'll get in about a week after our program today.

Judy is saying and sharing that she and her husband are both living with Parkinson's disease and we want to stay together. Should we expect our costs to be doubled, and what variables might be specific to this situation? So living with Parkinson's together, wanting to stay together through the process.

Erin Cecchi 00:48:05
Yeah. Well, thank you for sharing your unique situation because, understandably, I think it does add a component of care and consideration that is not present if only one person has the condition. Potentially, yes, costs are going to be more, but does it necessarily mean double? No. Again, I hate giving nonspecific answers, but it is very much dependent on what everyone's needs are.

I have worked with individuals where the couple both had a condition that was progressive in nature, where they had a shared caregiver. So, yes, the caregiver was coming in the home for a lot of hours, so that might have added to the cost, but it wasn't necessarily double because the caregiver is helping both spouses at the same time. Or let's say that you have to transition to an assisted living facility. It's not necessarily going to be double. It's going to be dependent on what your needs are, if you have a one-bedroom or a two-bedroom.

Again, I know it's not a specific answer, but yes, care costs may increase because, as individuals, you're going to have your own needs, which may then require outside help to meet those needs. We don't know exactly what level and extent of help that will be and what the cost associated will be, but it will not necessarily be double just because both of you have it. Again, when we're just thinking about options and needs, it really does start with this assessment of, okay, what is going well, what is not going as well? As I look down the future, what am I most concerned about, and how can I get ahead of that and plan accordingly?

Maybe the goal is to stay at home as long as possible, so I'm going to identify caregivers who can come in. But maybe down the line, there may become a time where that's not feasible. So let's explore other options, such as assisted living, that allow us independence and allow us to be together. Whether your spouse has Parkinson's or another condition or not, you might still want to be together, and that assisted living facility or other facilities will allow a couple to remain together even if they have different degrees of needs.

Crista Ellis 00:50:39
Thanks for answering that, Erin. To an extent, our situations are all unique, and especially if we are hoping to stay with the person that we love as our own age and body and minds start to progress.

I appreciate you asking that question. I'm going to ask a bigger question that has been answered, that you've approached in the presentation, and we're getting a lot of questions to ask again. When can I know that I need more help? What are some ways for me to determine that I need more help?

That "I" could either be a care partner who's caring for someone with Parkinson's and needs help in helping, or a person with Parkinson's who has established some kind of support system and is curious about at what point they make the decision that they need more assistance or support. How do I determine that?

Erin Cecchi 00:51:39
Yeah, and again, this is such an important question, arguably the most important question, and so it does beg repeating and constant reflection and assessment. This is, again, where the answer is so unique. There's not going to be a clear, hey, here's the one indicator that you need help, because it is so specific to each person. We might be really feeling well in one area of our life and not in another. For example, when we had the slide up about when to consider, it was reviewing the physical wellness, how is my mental health? Am I showing signs of burnout? Do I have extra support, family or otherwise, to help me?

I think by going through those main areas of your life, what's going well, what's not going as well, I think when we're focusing on what's not going as well, if more and more things are coming up that are not going as well, I think those are very much indicators that outside help is needed. Then we narrow it down by, okay, it's not going well in this area of my life. Or yes, my mental health is very much suffering because I'm stressed. I'm not sleeping. I'm physically strained. Diet, back pain - this is all coming together. So we know that help is needed, and then that allows us to ask, okay, well, what help?

Maybe I need to get someone for physical assistance. Maybe that means I need to seek a support group or a therapist of sorts. Again, it is so unique because we all have different needs. It's just constant self-assessment, asking yourself those questions about what is not going well, what do I feel like I just don't have the capacity to do anymore?

Sometimes asking yourself this kind of magic question of, if I were to wake up tomorrow and I wouldn't feel as stressed, what would that be like? Because that can help us say, oh, well, I wouldn't be stressed if I didn't have to get up at 6:00 a.m. and give someone else a shower and then plan meals. Okay, well, that's really stressing me out. Maybe that means I need to hire someone to do that.

It is a lot of self-reflection, which can be a mental task in itself, but I think it's just being curious and constantly checking in: how are you doing, what do you need? Using some of those prompts that potentially were included in the presentation to say, okay, what's going well, what do I want to improve in? Okay, I'm seeing I want to improve in a lot of areas. Maybe I need some help.

Crista Ellis 00:54:43
Mhm, yeah. Thank you, Erin.

We have a question from an anonymous viewer today who shares that she's caring for her husband with Parkinson's disease and is fairly confident that they have enough, and I imagine this is in reference to monetary means, enough to care for him, but I worry about my future care. What steps should I take when that time comes when I may need care for myself?

Erin Cecchi 00:55:10
Yes. This is, again, a very good question that comes up a lot, and understandably so, because if you are in any kind of partnership, married or otherwise, that is a concern, right? We know especially if we have someone who has a diagnosis now and maybe the other partner does not, we don't know what's going to come in the future. We don't know what anyone's needs are going to be.

There are fail-safes in many states in place that would allow someone who has more needs to be able to receive care paid by the state while allowing the well spouse or the community-dwelling spouse, the spouse that doesn't need the same level of care, to retain a certain amount of finances for themselves. There are some fail-safes, but also I think this is where, if you are in this situation, meeting with a financial planner, meeting with an elder law attorney, can be very good.

Are there specific investment strategies or trusts that you can use to separate finances or protect finances to make sure that both of you have the adequate finances to pay for your unique care needs? I think a financial advisor and elder law attorney, for certain, because elder law attorneys are central and experts in what's called Medicaid planning. Again, that's its own topic, so I don't mean to open a bag of worms, but if you can Google and use that term if you want to research Medicaid planning, which allows the state to potentially pick up care for someone with advancing needs while allowing the well spouse or well partner to retain a certain amount of assets on their own.

That gets complicated. Actually, the Parkinson's Foundation has also had some presentations by elder law attorneys in the past, and I'm sure we'll have more in the future. Again, I think thankfully there are options out there. It's just going to be unique to everyone's situation.

Crista Ellis 00:57:31
Now, thanks for mentioning the advance care planning. Joseph actually wrote in a question about advance care documents for identifying medical advocates. I wanted to also just reiterate we have all kinds of resources that are specific to advance care planning and more resources that can help guide you to financial advisors, elder law attorneys that are specific to the needs of someone with Parkinson's disease.

We've got time for just one more question, Erin. This viewer has written it quite a few times, so they really want it answered. I'm going to make sure to ask you. What are the most important things to do to age in place when you're living alone with Parkinson's?

Erin Cecchi 00:58:13
Yeah, great question, because when we talk about and have these presentations that are about caring, we're usually working under the assumption that there is at least a dyad, two people. But we know many people are caring for themselves. When we think about aging in place, talking to an elder care financial advisor can be, I wouldn't say more important, but very critical for someone who's living alone because we don't know if you have access to friends and family who could even step in to make decisions for you. I think coming up with a comprehensive plan of, financially, do you have the means to age in place, and outlining resources.

We talked about those different types of in-home assistance. Again, not necessarily more, but equally as important if you're navigating this care on your own, is navigating options. Really outlining, okay, I'm fine now. In the future, I might need care. Here are some local organizations and agencies I know to get care.

Aging in place, we think about accessibility and mobility, so one floor, elevator access, access to grocery stores, access to activities and whatnot. I think it's again when we take that holistic lens of what's important to us and we think about, okay, how can we break down the barriers and challenges that are present now or in the future, knowing that things might get more difficult in the future? How can I make it as easy for myself as possible in accessing different aspects of my home, community or resources?

Crista Ellis 01:00:00
Thank you for your time today, Erin. Really appreciate you and everyone who has shown up for today's webinar on exploring the next steps in care.

The Parkinson's Foundation provides weekly education and wellness programs virtually through our PD Health at Home series that includes our Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays, our Expert Briefings and our Spanish-language programming, Epi Salud en Casa. I'd like to invite you to join us this Friday for our live Fitness Friday session with the New Orleans Ballet Association for a session on Dance for Parkinson's.

Join us for a medium-intensity creative dance class that encourages stretching, large and big movements, multitasking, dynamic balance, weight shifting, and aerobic rhythmic coordination. It'll be accompanied by the sounds of Jeffrey Pounds. You can learn more and sign up to attend at Parkinson.org/PDHealth.

Please do not hesitate to reach out to us if you had a question that was not answered today. You can call our Helpline at 1-800-4PD-INFO. You can also email our Parkinson's specialists at Helpline@Parkinson.org and browse our comprehensive website, Parkinson.org. But before you go, as you end the webinar, your Zoom screen will prompt a survey. Our programming is fueled by your feedback, and I am deep in the trenches of identifying our program plans for calendar year 2025. So if you would like to learn more about a particular topic, please take some time to let us know what you'd like to learn in future sessions.

Until then, take care. We'll see you on the next Wellness Wednesday soon.