Care Partners of Veterans with Parkinson's Disease

Crista Ellis 00:00:00
Finally, welcome to the Parkinson's Foundation's webinar on Care Partners of Veterans with Parkinson's Disease. I'm Crista Ellis, your host for today's webinar. Helping me behind the scenes are my colleagues Danielle Agpalo and Laura Cameron. Thank you both for your support. More than 110,000 veterans with Parkinson's disease receive care through the U.S. Department of Veterans Affairs, also known as the VA.

Many U.S. military veterans with Parkinson's have access to specialized medical care and financial assistance through the VA. Today's program offers essential support and practical guidance for care partners of veterans living with Parkinson's disease. I want to highlight that this program is for those caring for someone with Parkinson's disease. We will learn effective strategies for managing the evolving responsibilities of caregiving and learn how to access a range of valuable resources designed to enhance your caregiving journey.

Today's webinar and the entire Veterans Webinar Series is presented with support from the Don and Lorraine Freeberg Foundation. We want to take this moment to thank the Freeberg Foundation for helping to make these programs possible. The mission of the Parkinson's Foundation is to make lives better for people with Parkinson's and those impacted by Parkinson's. Whether you're living with Parkinson's, caring for someone with Parkinson's, or working to end the disease, we are here to support you. To achieve our mission, we pursue three goals: improve care for everyone with Parkinson's, advance research toward a cure, and empower and educate our global community. Today's program is a great example of one of the ways we are doing this to help us meet these goals.

The Parkinson's Foundation hosts weekly education and wellness programs through our PD Health @ Home virtual programming. Join us for Mindfulness Mondays, Wellness Wednesdays, and Fitness Fridays. Most of the PD Health @ Home programs are recorded and posted on the Parkinson's Foundation's YouTube channel. You can scan the QR code on the screen to connect to our YouTube channel, or find out more and register to attend our live PD Health @ Home programs at Parkinson.org/PDHealth.

Part of the Foundation's commitment is to reach every person living with PD. A critical way we do that is through our partnerships. With more than 110,000 veterans living with Parkinson's disease, the Foundation is proud to have established a formal partnership with the Veterans Administration. This partnership has the overarching goal to improve the quality of life for veterans living with Parkinson's disease and their care partners through greater access to education, resources and support. I'd like to invite you to visit our webpage and explore the resources offered by the Parkinson's Foundation that can support your navigation of living with Parkinson's as a veteran or caring for a veteran with Parkinson's disease. That website is Parkinson.org/Veterans.

I'm happy to kick things off by welcoming Corlynn Hullfish, a dedicated social worker with the Corporal Michael J. Crescenz VA Medical Center. Corlynn, we're grateful for your time and expertise today. Thank you for being with us.

Corlynn Hullfish 00:03:37
Thank you so much, Crista, for having me. I really appreciate the opportunity to be here.

All right. I am going to go ahead and share my screen.

All right. I'm hoping that everybody can see that. Certainly, Crista, if you can let me know if you can't.

I'm very pleased to be here today. Again, I'm going to be presenting on some of the issues that impact care partners of veterans with PD. Specifically, at the Michael J. Crescenz VA Medical Center in Philadelphia, I work with the Caregiver Support Program.

I always like to start these talks with this quote from Rosalynn Carter. I'll read it to you first and tell you what I like about it: There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need a caregiver. I think what's so important about that is it's just a nice reminder to those of you who are providing care. Maybe you've been somebody who's needed care in the past, and maybe you may need it in the future. Perhaps the person that you're caring for right now has been a caregiver to others. I think it just highlights the importance of caregiving as part of our human experience. I just like to keep that in mind when we talk about caregiving.

For today's topics, I'm going to be covering some of the considerations for caring for a veteran with Parkinson's disease. Also, caring for yourself, because certainly I think this can be an overlooked area, and we know how important it is to take care of yourself when you're taking care of somebody else. Also, where to find help, both at the VA and in your community.

There are some special considerations for caring for a veteran with PD. For many of us who have worked with veterans over the years, it has appeared to us that perhaps our veterans are a little sicker than our general population. In fact, there was a study published in 2021 in the journal Healthcare that does suggest that our veteran population tends to be sicker overall than the general population. This certainly can complicate Parkinson's disease.

We know that Agent Orange exposure that may have contributed to the Parkinson's disease diagnosis that your veteran has can also increase the risk for certain cancers, for diabetes and for thyroid disorders, all of which may make caregiving more difficult.

We also know that many of our veterans have certain mental health issues related to their military service, such as PTSD, or post-traumatic stress disorder, further complicating the caregiving experience.

Corlynn Hullfish 00:06:30
One thing I wanted to touch on today, and many of you may already be aware of this, is that basically the VA has now said that if you were exposed to Agent Orange while you were in Vietnam, and basically if you were in Vietnam, you were exposed to Agent Orange during a certain number of years, or if you were stationed at Camp Lejeune during the time that you see on the screen, or if you experienced a traumatic brain injury as part of your service and you now have Parkinson's disease, those things contributed to your Parkinson's disease. It is presumed that that is why you have Parkinson's disease.

The reason that's important is that you can then work with the VA to get what we call a service-connected disability. That would be where they would connect your Parkinson's disease to your service in the military, which could open up a lot of benefits to you and to a care partner. One of the ways of looking into this further is the website on the screen. Our VA.gov website has information on service connection. You can also look within your community. Many people work with their county veterans affairs office to see if they could be eligible for a service-connected disability.

Also, working with a veteran service organization, a VSO, such as your local VFW, your local American Legion or the Disabled American Veterans, to name a few. Ideally, if you're able to get a service connection of 70% or higher, that number really opens up a lot of benefits that I'm going to talk about further down in this talk. We'll talk about that in a little bit.

Some of the challenges of being a care partner of somebody with PD, I'm going to go through each of these briefly and then a little bit more in detail on further slides. Apathy is definitely a big one. It can be really frustrating, both for the person with Parkinson's and for the person that cares for them. Managing on-time medications can also be a challenge. For some veterans with PD, and within the population generally we say about 30 to 50% of people with PD experience cognitive issues, so certainly not everybody. For those who do, it does add a little bit of extra strain.

It can really make having a routine very helpful, although certainly remaining flexible is important. Freezing and stiffness sometimes can lead to falls, which can also make the unpredictability of being a care partner even more challenging.

I'll talk about apathy first. Apathy is really a tricky one. It's not really something that can be treated with a medication or anything like that. I would describe it as kind of a lack of get-up-and-go. Sometimes it comes across as a lack of interest, enthusiasm or motivation. It definitely can interfere with the management of Parkinson's disease because when somebody has apathy, they might be less likely to be tuned into managing their own medications or to making sure they get the exercise that we know they need. It's not the same as depression. It can sometimes look similar. Depression sometimes can be treated with medication.

It can also zap a person's energy and make it difficult to figure out: Is somebody's mood related, again, to that lack of get-up-and-go, or is it depression? That can be hard to tease out. The reason I put this in a caregiver talk is because I think apathy is one of the more frustrating symptoms for care partners, because what I hear from care partners a lot is, I just feel like a nag. Nobody wants to be a nag. It's hard to be in that position of having to kind of be the cheerleader of, come on, let's do this. We've got to get this medication in you, or let's go exercise. That one, I think, sticks out for a lot of care partners.

Corlynn Hullfish 00:10:39
Giving medications is certainly another challenge that can come up. If there's ever an opportunity for the veteran to still be capable of managing this as much as possible on their own, that certainly can be encouraged. I think it's one way to maintain independence. This also can be a shared experience, where perhaps the care partner is helping to set up pills or to make sure that they're giving reminders. A weekly or monthly pillbox is incredibly helpful. I will just say that I think this is important for everybody, regardless of your age or whatever your diagnosis is.

Taking a pill every day at the same time is a repetitive motion. You have a memory of having done it, but it's hard to remember: Did you do it today, or did you do it yesterday? If we think about that similar to, say, brushing our teeth, we have reminders that we know that we brushed our teeth because the toothbrush is now wet, maybe our mouth tastes like mint. You go, okay, I've remembered I brushed my teeth. I remember doing that motion, but sometimes it would be hard to remember yesterday or this morning. That's what the pillbox does for you. Once that section of the pillbox is empty, you have your knowledge that, okay, I did take that pill. Or, if you're in the position of being a care partner, looking in that pillbox and saying, okay, I know the veteran did take that pill. I think those are incredibly important.

Setting a phone alarm can also be really important. Even though you know that you're supposed to take a medication dose at 3:00, 3:00 for many of us, again regardless of our age or diagnosis, can quickly go by, and then you look down and it's 4:00. Having an alarm or a pillbox with an alarm is really important. I'm sure many of you have sat in Parkinson's disease meetings and heard an alarm going off, and looking around, it's medication time for half of the room. This is something that we know to be helpful.

I think it's also important that people know that the VA has pharmacists who can assist you with your medication questions. This is also important to know that this is often the most affordable option for veterans to get their medications. For some veterans, they prefer to get their care within the community, not necessarily at a VA medical center, which is completely fine. But if you get set up with a primary care provider at the VA, you can then also, even if you see that person just once a year, get your medications at the VA medical center, which again, for a lot of people, is a more affordable option. Just know that that's available.

Again, medications. The schedule can be somewhat difficult. We know that carbidopa-levodopa, the gold standard of medication for Parkinson's disease, is only effective in our bodies for about three or four hours, so it needs to be taken fairly frequently. Often people take it three or four times a day, sometimes five to six times a day. Again, this can be somewhat difficult for care partners to keep track of. We just want to highlight that we understand that this can be difficult and figure out ways that we can support you in making sure that the veteran gets their medication on time.

We know that on-time medication increases one's quality of life because without it, you might have worsening tremors, increased rigidity, loss of balance, confusion, agitation and difficulty communicating, which is likely going to be frustrating for both of you.

Corlynn Hullfish 00:13:59
There are also added challenges for caregiving when there is cognitive decline. As we already mentioned, that's about 30 to 50% of people with PD. This can lead to increased caregiver frustration because not only are you now having to think about your own appointments and your own things that you need to take care of, but now you're trying to remember them for a whole other person all the time. That can be really hard. It can also feel really isolating to have to do so, and it increases feelings of grief.

When we talk about grief in this scenario, what we're really talking about is an ambiguous type of grief. That's grief where the veteran is still present. They're still with you, but maybe psychologically they might be a little bit more absent. That can be really hard, both as a person experiencing it and for the people around you who may not really know how to tune into you in that way, how to be there for you when you're grieving a loss of somebody who is still here. I think culturally many of us know how to show up for somebody when there is an actual death. We may have grown up going to a funeral or knowing that we send a card or flowers. Many of us show up with a casserole or whatever it is that you do in your culture and your community.

But when somebody is still here, sometimes it becomes more awkward for us to figure out how to provide support to that care partner.

Freezing is another frustrating symptom of Parkinson's that you may be dealing with as a care partner. This can sometimes happen either when the veteran may be standing or may be sitting still in a chair and having trouble getting out of that chair. Often this happens when medication is due, when your next dose is about due and it's already worn off. It may start to happen as somebody's trying to start moving. Going through a doorway or some sort of a threshold can often cause freezing, and it can definitely be increased by stress or by attempting to multitask.

I know we often hear about mindfulness, but doing something mindfully and one thing at a time can really be helpful here.

Some other things that might help with freezing are using a laser light or another line on the floor of some sort to step over, maybe putting a piece of tape on the floor in an area where the veteran typically gets frozen.

Singing or humming a familiar song sometimes is helpful. Perhaps walking backwards or shifting the weight of your body from one leg to another can be useful, although again, if balance issues are a problem, you might want to be a little bit careful with that one. The one I really like for our veterans is marching in place. We know that many of them were taught to march in boot camp, maybe decades ago. That reminder to march in place may be particularly helpful for them and might bring that back so they're able to keep moving forward.

Corlynn Hullfish 00:16:52
Falling can also be another difficult situation for caregivers. Again, if you have somebody who falls periodically or even sometimes multiple times a day, this really does wreak havoc on your schedule and trying to figure out how to keep everybody safe. We know that most of us will have an increased risk of falling as we age, but with people with PD, they do have twice the risk of their peers. That does make things difficult. That's somewhat due to the stiffness and the slowness. Also, what tends to happen is people start to feel afraid of falling.

They tend to pitch themselves forward and kind of put their hands out as if they're going to catch themselves falling. But what that really does is it pushes our center of gravity forward and actually makes falling more common. This is an area where you really want to work with a physical therapist to try to figure out how to get somebody to stand up straighter, have better posture, have better gait and reduce their risk of falling.

Non-motor symptoms, such as neurogenic orthostatic hypotension, which is a mouthful, also known as NOH, can also contribute to falls. This is when a veteran would stand up and their blood pressure goes low, creating some dizziness and some instability, which is really difficult. It is important to get some treatment for that.

As far as fall prevention goes, one of the things that can be helpful is reaching out for an occupational therapist who would do a home safety evaluation. These can be available in many of the VAs throughout the country. Sometimes they're done by a video call. Sometimes the person may actually come to your home and take a look around and give you some suggestions. Some of what they're looking for is: Is the lighting good in, say, a hallway where the veteran maybe has fallen so that they're able to see where they're going, or in a stairwell? They may take a look around at the furniture placement in the house. Is there too much furniture? Is it too crowded, or is it too spaced apart?

Sometimes having furniture placed in such a way so that maybe the veteran might be able to hold on to things as he or she moves through the home can be useful. Area rugs, they're beautiful and lovely, but sometimes they do create a bit of a trip hazard. An occupational therapist can be really useful in that way. The other thing is using durable medical equipment to prevent falls, so maybe a cane, maybe some walking sticks or a walker. One of the things that the VA does particularly well is the use of DME.

If you're looking for particular equipment, it can be helpful to reach out to your primary care provider to ask what might be available. Again, neurogenic orthostatic hypotension, or NOH, talking to your provider about any treatments that might be useful for preventing that dizziness to hopefully prevent the falling. This sometimes can be medications, but there are a lot of other things that can be done as well. Sometimes it's also just training the veteran to stop when they stand up. I think most of us take it for granted that we stand up and we suddenly start moving.

With NOH, it can be helpful to stand up and stop, you know, for 30 to 60 seconds before deciding to move forward. Sometimes that can help prevent falls as well.

Corlynn Hullfish 00:20:11
Some PD safety concerns. One of them may be that you may have gotten to a point where you feel like leaving the veteran alone is not a great idea. That might be for one of two reasons. Perhaps there's a cognitive issue, and maybe you worry that they might leave the stove on, or there may be some other safety issue. Another one could be that physically you just feel like if there was a fire or some other issue, that person might not be able to get themselves out of the house quickly. That can come up.

The other thing that often comes up is driving. We certainly have many, many people with PD who drive for quite a long time and are safe drivers. Just having a diagnosis of Parkinson's disease does not necessarily mean that you should not be driving. But it is something to take a look into if you, as a care partner, have some concerns. As Americans, we all know we love cars and we love driving. For many of us, it symbolizes independence and freedom, so it can be important to tread lightly here. But one of the things that many VAs do offer are driving evaluations, where they would take a look and figure out if they feel like the veteran can still drive safely, if their reaction time is good. Sometimes small modifications can make driving still possible.

One way of doing that can be by asking the veteran to only drive during the day, stay close to home or avoid inclement weather. We already talked about the use of a pillbox in terms of remembering to take medications, but I think it's also another safety issue that can be addressed, which is that if you are concerned that the veteran could take too much medication if the bottles were unsupervised, or if you are concerned at all about suicidal ideation, then using a pillbox so that there's only a small amount of pills accessible at a time and hiding or putting away the other full bottles would be helpful. I think that's another important use of a pillbox.

A medical alert system may be available through some of your VAs and can really be helpful for alerting somebody, alerting your EMS personnel, if there is a fall. Some of them even have fall sensors on them so that if the veteran were to fall while home alone and potentially hit their head and became unconscious, that system would still work to alert EMS that there was a fall in the home.

Finally, I think when we're talking about our veteran population, it's really important that we also talk about gun safety. Many of our veterans own guns. In fact, you all may be aware that our government trained them to use guns, so this sort of makes sense. It is just important to think about whether or not the gun is being stored loaded or unloaded, if it is stored with ammunition, if it is in a gun safe, or if a gun lock would be appropriate. Most VAs around the country do supply gun locks upon request, so that is something that you can look into.

I also think it is important for firearm owners to have some sort of a succession plan for their firearms. It can be difficult to figure out what to do with a firearm after somebody has passed, so it can be an important conversation to have as a family before that happens.

Corlynn Hullfish 00:23:28
An emergency bag, I always put this in all of my talks for caregivers. This tip came to me from a caregiver of a veteran years ago, and she was in a situation where she really had wished she had had an emergency bag. This is a bag that she keeps in her trunk now that has a full change of clothes, some incontinence supplies if those are something that your veteran requires, some extra medication. You never know when you may be stuck out in the community longer than you expected to be. Also, a first aid kit. We've talked about falling, and certainly sometimes falls can be very serious, but sometimes they're minor and it's just a couple scrapes that you might be able to take care of with a first aid kit.

One of the things that the Parkinson's Foundation has really been focusing on is hospital preparedness. This is incredibly important because we talk about on-time medication, but in hospital systems, on-time medication can really mean something more like medications given at breakfast time or at lunchtime or at dinnertime throughout the day. But when we talk about a veteran needing medication at 9:00 a.m., we mean 9:00 a.m., not breakfast time. This kit gives you some tools to talk to the medical staff if your veteran does end up in the hospital.

It can be really important, though, to do that kindly and gently and politely, to educate the staff about that need. You can see it's a bag, and what the bag is useful for is to take your full bottles of medication with you to the hospital. The reason to do that is that most hospital pharmacies are not going to have more of the specialty-type Parkinson's medications. They're likely to have carbidopa-levodopa in stock, but let's say you're somebody who takes Rytary, they're very unlikely to have something like Rytary in stock. Again, if you bring the bottles with you, that can be helpful.

It's also important for hospital staff to know that sometimes what happens when they bring an older person in who's agitated into an emergency room, that person is given Haldol to calm down. But we know that Haldol is generally not very helpful in Parkinson's disease, so it can be really helpful to know that ahead of time. If they let you know that they're going to give Haldol for that purpose, let them know that they should find a different medication that would be better suited.

Corlynn Hullfish 00:25:49
We're going to switch now to the need to care for yourself as the caregiver, as the care partner. The reason that this is important is because you are important in and of yourself, but also it's really hard to take care of somebody else if you're not taking care of yourself first. We've all heard these sayings: You have to put the oxygen mask on yourself first before you put it on your partner, or you can't pour from an empty vessel. There's a lot of truth to those.

We know that for caregivers who aren't taking care of themselves, they may see some changes in eating and sleeping patterns, loss of interest in things they used to enjoy, increased medical illnesses, feelings of hopelessness, exhaustion and irritability, all contributing to caregiver burnout. I think logically we all know the answer to this question: Is self-care selfish? Obviously, the answer is no. But I think it can feel selfish. I think it's something that we all kind of have to work together on to figure out how to move past that, because it's not only important for yourself, but it does help you to provide better care and helps for better outcomes for the veteran. Prioritizing yourself and seeking support from friends and family or from professionals to help prevent burnout is really important.

How do we address caregiver burnout? I think that can come from one of two things. One is carving out some time for yourself. The other is addressing whatever your coping skills are. Now, sometimes it may be really hard to find that time for yourself, and I think that's again where the coping skills come in. When you really can't carve out that time in any given day, how are you going to move forward? You're going to have to figure out how to cope.

The first one, taking time for yourself, I like to think of it in these five categories. You may have more categories that you find are useful in terms of taking care of yourself. But the first one is taking care of your own medical needs and checkups. Again, these things very easily go by the wayside, thinking about the veteran's appointments seem to take precedence or, gosh, I don't think I can leave him or her alone to go to my appointment. We'll talk about ways that the VA can support you in getting that time. But it is really important. There are a lot of things that can be caught medically if we catch them early, and they're much more treatable. It's really doing yourself and your veteran a favor to get those things checked out early.

I think it's also important to try to schedule either some weekly, monthly or daily time to do something that is just for you. Sometimes this can be really overwhelming. I think people often think, well, I don't have time for a vacation. That's okay. It really can be very small. It can be starting with as little as five minutes to take some time to do some breathing. I've talked to caregivers who say that they like to get up, and I'm not a morning person, so I do not relate, but they get up a little earlier than everybody else in the home and spend some time meditating or in prayer. That's just their time.

I've heard other people say they actually like to stay up late for the same reason, to have a little time by themselves. That can be really important. Maybe it's just setting aside time for your morning coffee or meeting up with a friend. It can just be these little things that can add up. I also want to add in exercising regularly, and socially if possible. I think this is an opportunity to really do two great things for yourself. We all know that exercise is important, that that's really good for our bodies and for our brains.

Also, if you're able to do it socially, say meet up with a neighbor to go for a walk or meet somebody at the gym, that can kind of recharge your social battery while also making sure you're taking care of yourself.

Corlynn Hullfish 00:29:43
Joining a support group. If you are on this call today, hopefully that means that you're somebody who might even be open to joining a support group. You've joined here. There may be virtual support groups that are run nationally or even locally that you may be able to join, and you may be able to find something in person locally as well.

The last one is really in terms of accepting help from others. Oftentimes people will tell us, when they say, is there anything that I can do to help, I think often our own reactions are, no, no, no, I'm fine. It's fine. Thank you. We kind of dismiss that offer for help. I think when people offer to provide help, they really do mean it. I think it's really important to try and tune into that when it's offered. I know that that's really hard.

But I think if you can start small and have a list of a few things that you can offer to somebody that they can help you with, that can help. Being able to ask somebody to pick up some medications at the pharmacy or a gallon of milk, or somebody to come and sit with the veteran and have lunch with them maybe once a week so that you can get out and do some errands. If you can start to think of a few things that you think would be helpful that you really could hand to another person, again, I believe people want to help. I think sometimes people just don't know where to start.

Sometimes, as I mentioned, taking the time for yourself in any given day is just not going to happen. Then what do you do? You still have to get through the day. That's where these coping strategies come in, and many of you may see some on here that you already are using. You may see the one at the bottom that probably wouldn't be noted to be the most healthy option, but I'll talk about where I think that there's a place for that.

The first one is problem-focused strategies. Sometimes there are problems that can actually be solved. Maybe it's a small problem and you figure out that you just need to tackle that problem, and that's how you're going to cope with it. Certainly, there are larger problems where that's not going to come easy and is not really an option.

But emotion-focused strategies. This is maybe a person who really finds comfort in calling a friend and venting. Perhaps they use journaling as a way to let it all out. That can be really helpful for some folks to cope. Some people find seeking or understanding strategies to be useful. These people tend to be more spiritual or religious in nature, and they really are kind of looking for that higher meaning in whatever issue is coming up for them.

Corlynn Hullfish 00:32:21
Help-seeking strategies: this is somebody who's going to be seeking out guidance, perhaps through therapy or maybe through a support group. Then again, there's our other one at the bottom there, problem avoidance or denial. I think that there is still a place for this. Some people may disagree with me, but I think there are days where you just are not going to be able to tackle that issue at all. It's okay to kind of box it up and put it on a shelf for a little bit. I think where the problem comes is if this is your only skill. Certainly, it can cause problems. It can even cause physical problems where you really start to feel ill by keeping everything inside.

But in a moment, if you need to box it up and put it somewhere just so that you can get through the day and come back to it at a later time, I think there's nothing wrong with that sometimes.

One of the benefits of caregiver support, and I'm going to talk more about the Caregiver Support Program, is having access to whole health coaching. You may have a veteran who actually already uses whole health coaching at their VA. This is something that we can open up to you too as a caregiver if you're enrolled in the Caregiver Support Program. You'll see in this circle here that you have me at the center with all of these things around you: your spiritual life, nutrition, moving your body, your relationships. What whole health does is it focuses on all of these things and how they can contribute to your wellness.

How can you find help for yourself and for your veteran? I'm going to talk about a few ways to do that. One is through the PADRECCs, and I'll talk about what PADRECCs are, or PADRECC-associated sites. I'm going to talk about rehab therapies in the community, assistance through home and community care at your VA, community resources, and also through the Caregiver Support Program.

Our PADRECCs are known as our Parkinson's Disease Research, Education and Clinical Centers. There are six of them, and it's very likely that you live nowhere near one of these six places, which is why they also have these 50 associated sites throughout the country. They tend to be staffed by movement disorder specialists or by medical professionals who are very familiar with Parkinson's disease. A movement disorder specialist, if you don't already know, is a neurologist who has extra training in Parkinson's disease. This can be really important because they tend to be more aware of the latest medications and therapies that are available.

If you think about how broad general neurology is, neurology covers stroke, migraines, epilepsy, MS and ALS. It's really quite broad. It would be very difficult for a general neurologist to know absolutely everything there is to know about Parkinson's disease, which is why we really encourage you to see a movement disorder specialist if you have access to one. Even if you love your neurologist, it can be helpful just to see one once a year, even if you typically want to see a regular neurologist.

Rehab therapies for PD. Many of you, I'm sure, are already aware of the importance of physical therapy, occupational therapy and speech therapy in PD. All of these can be done in the home or in the community, and many VAs offer access to these therapies. It can be important to give your local VA a call and see what they have both in-house, and sometimes, again, they do refer out into the community. Physical therapy is incredibly important for staying active. We know that exercise is important for Parkinson's disease, but also it's one of the few things that helps with balance and falling issues.

Corlynn Hullfish 00:36:11
There really is no magic pill for falling. It's really about getting somebody in to see that physical therapist. Occupational therapy, we already talked about in terms of home safety evaluations, but what they also do is they can really help care partners figure out the best way to help the veteran without potentially hurting themselves, if we're talking about getting somebody up from a fall, but also how to make daily tasks easier. These can be your hobbies. It doesn't have to just be your activities of daily living. We talk about ways to make bathing, dressing and feeding easier.

Your occupational therapist is the person who knows all of the equipment, all of the specialized equipment that can help with each of these tasks. They're really invaluable.

A speech therapist is really important. They do three different things. One, they do cognitive therapy, which can help with thinking and memory. They also do what we think of as traditional speech therapy, where if the voice, we know that the voice can be quieter with Parkinson's disease, they really help with the strength and quality of one's voice. Finally, swallowing. We know swallowing can be an issue in Parkinson's disease. They also really are great at helping to figure out if there is a swallowing issue, which is certainly a safety concern, and how to strengthen the muscles that are associated with swallowing.

At the VA, and again, these services can vary widely from VA to VA, so just because you see it on the screen doesn't necessarily mean it's available where you are, but it is something that's worth checking into. You may be able to request adult day health care through your VA. These programs typically are day programs. One of the nice things about it is they offer socialization for our veterans, but also they typically provide transportation to and from the program. It can add a little bit of extra time onto either end of that day for more time for a care partner to get whatever they need to get done.

Some VAs also offer home-based primary care, so really a house call doctor, which is fantastic if you are at the point where you feel like getting your veteran out of the house to see the doctor has been difficult. Again, this isn't necessarily available everywhere. What I will say is house call doctors seem to be making a comeback across the country and are often covered by Medicare. If you don't have access to this through the VA, it might be something worth looking into in your community. I have taken care of a loved one who had a house call doctor, and it was really amazing. They were able to do a lot in the home.

They were able to do eye exams, blood tests and EKGs. It was really very helpful.

The home hospice care benefit through the VA is very similar to the Medicare benefit for hospice. If you're familiar with that benefit, typically hospice is recommended when it is perceived that somebody has less than six months left to live. With neurological issues, this is very tricky to determine. We just recommend not thinking too hard about that six months. Often, people live much longer on hospice. It just may be the way that the doctor is trying to recommend for you to get a little extra help in the home.

Many VAs also offer homemaker services, which is exactly what it sounds like: somebody to help with some of the cleaning in the house, as well as home health aide services. A home health aide is somebody who would come and help a veteran with his or her activities of daily living: bathing, dressing, feeding, toileting, et cetera. One of the really wonderful things that the VA does is that veterans who are enrolled in VA health care can be eligible for up to 16 hours a week of a home health aide, which is incredibly helpful.

You may be familiar with the Medicare system, which will provide a home health aide after a hospitalization or after a rehab stay, but it's really not a long-term solution. This is a really fantastic benefit available to our veterans.

Corlynn Hullfish 00:40:22
For veterans who are 70% service-connected or higher, and we talked about the importance of service connection earlier, they can get up to 58 hours of a home health aide per week if it's medically necessary. That can be a really important benefit that's available.

Some VAs also have access to the Program of All-Inclusive Care for the Elderly, or PACE programs. These programs also exist in communities across the country, and when they say all-inclusive, they really mean all-inclusive. They completely take over care and make sure that the person receiving the care gets everything they need. If that's a home health aide, if that's a physical therapist, they really take care of everything. The only catch is that they get to determine who the provider is. That's not necessarily a great option for everybody, but just know that could be an option for you and for your veteran. Skilled home care is your PT, OT and speech, but also can be a nurse to provide wound care or to help with a feeding tube or something like that. That's another option through the VA.

Lastly, I'm going to talk about respite care, which is really another fantastic benefit offered by the VA. This is for any veteran who is enrolled in VA health care. The care partner is entitled to 30 days per year of respite care, as long as the veteran has been seen by a primary care physician in the last 12 months and has somebody that they identify as a caregiver. That person does not need to live with them and does not necessarily have to be a family member.

One of the things to know though, is this 30 days can be offered either in a facility, at a skilled nursing facility, or through home health, through a home health aide coming to the home. Where this can be a little bit tricky is that it does not include overnight care typically. If you were going out of town and decided that you wanted to keep the veteran at home, you would probably have to either pay out of pocket for the overnight hours or have a family member or somebody that you trust come and stay, and then have the VA provide a home health aide during the day.

There are also resources within your community that might be helpful. If you haven't already contacted your local county office on aging, I strongly suggest doing so. They have access to all sorts of different programs. Usually, they'll ask you questions about what your loved one needs. You may even be calling for yourself, because if you are a non-veteran, this is certainly a good place to start for your own care. They are the folks that often handle home-delivered meals, energy assistance, and pharmaceutical assistance can also be offered by many of your local offices on aging.

I always tell people, just give them a call, let them know your situation and see what, if anything, you qualify for. At the Caregiver Support Program, we often get calls from veterans who are caring for a non-veteran, and unfortunately, we're not able to enroll them in our Caregiver Support Program. We do refer them over to the Red Cross Military and Veteran Caregiver Network, which has been really helpful, as has the Rosalynn Carter Institute for Caregivers. They have kind of two tracks for caregiving, one for dementia caregivers and then also they have a military and veteran caregiver track.

Then, of course, we have our VA Caregiver Support Program that I'm going to talk about more in detail. This program has two parts. The first one is the Program of General Caregiver Support Services, or PGCSS. That's the portion of the program that I work with. The other program is called the Program of Comprehensive Assistance for Family Caregivers, or PCAFC.

Corlynn Hullfish 00:44:21
With the Program of General Caregiver Support Services, this is really open to any veteran who has an identified caregiver and is enrolled in VA health care. That person does not have to be a relative or live with them.

What we provide to those caregivers, we provide a lot of education and support, including S.A.V.E. training, which is suicide prevention training. We provide them access to a program called Building Better Caregivers, also to a program called REACH VA, which also has a program specific for Parkinson's disease. We offer access to Caregivers FIRST and whole health coaching. At our VA in Philadelphia, we have a variety of support groups that we offer, and that's going to vary from Caregiver Support Program to Caregiver Support Program.

What we try to do is offer support groups for PTSD, for cognitive impairment, for just general caregiving. Then we try to also have some more of our fun-type groups, like a book club or a gardening club. We try to offer activities that allow caregivers to connect with other caregivers who know what they've been coping with and especially the experience of caring for a veteran.

For the PCAFC, the folks who are enrolled in that program also receive all of the same education and training that's offered to the general program, but they also can receive what we call enhanced respite care. Most veterans are entitled to that 30 days. With enhanced respite care through PCAFC, if somebody is approved for that program, they can get as much respite care as is deemed clinically necessary.

Caregivers in that program also have access to mental health counseling. They have access to beneficiary travel when they're traveling with the veteran to appointments. They can receive a monthly stipend. They also have access to health insurance through CHAMPVA.

As far as the eligibility criteria goes, folks who apply for this program should be 70% service-connected or higher. The veteran must be in need of help with their activities of daily living or need supervision due to, say, dementia or a head injury, something where they cannot be left alone, for at least six months. Let's say somebody had an accident and they're expected to fully recover. That would not be somebody who would be a good candidate for PCAFC.

But if it's somebody who's determined to have long-term care needs, this may be a program that might be worth them applying for.

Corlynn Hullfish 00:47:06
At CSP, we have a website. It's Caregiver.VA.gov. There is a ton of fantastic information there. Even if you aren't enrolled in either program or have no interest in being enrolled, there's a lot of great caregiver information there. There is also the link to apply to the PCAFC program, so you can do that online. There's also access to be able to print the form from that website. If you prefer to fill it out on paper and mail it in or drop it off at your VA, that's also fine.

We also have a caregiver support line that is available Monday through Friday and on Saturdays, where a professional from the VA will pick up the phone and offer counseling. You do not have to be enrolled in VA health care to access this. It is available to all caregivers of veterans.

I also just wanted to highlight some of the resources again that are available through the Parkinson's Foundation. As Crista mentioned, they have been in a partnership with us since 2020. They have really a ton of fantastic information on their website for veterans, including a frequently asked questions guide for veterans with PD and their care partners, along with many fact sheets and information on Agent Orange, which is also really important.

Then obviously here is their national helpline, the hospital safety kit, which I mentioned. They also have a newly diagnosed kit that's available.

Again, here is our information for those of you who might be interested in our Caregiver Support Program. There's our national caregiver support line, as well as our website.

Finally, here are some other resources that might be available to you nationally from some reputable sites that hopefully can provide you with more information if needed.

If anybody has any questions, if you haven't already put them in the chat, please feel free to do so, and we will get to your questions.

Crista Ellis 00:49:19
Thank you so much, Corlynn. I know that we've had actually a really tremendous response to the questions, and it's really beautiful how the questions are asked and then a couple slides later, you answer the question. Right on track with what everyone who is present here is really curious about. For those of you who submitted questions, we will address as many as we can after we speak to our care partner who is providing support to their loved one, their husband living with Parkinson's who is also a veteran. Hi, Barbara.

Thank you for joining us today.

Barbara Leffler 00:50:00
Thank you, Crista.

Crista Ellis 00:50:01
Of course.

Barbara, just to share a little bit with our community, could you offer some context for your journey with Parkinson's at this time and how long Gary has been living with Parkinson's, and what you know as far as being a care partner to a veteran of Parkinson's? What would you like to share before we dive in?

Barbara Leffler 00:50:22
Okay. Well, my name is Barbara Leffler, and I'm in Colorado. My husband, Gary, is a Vietnam veteran. He was exposed to Agent Orange. He was diagnosed with Parkinson's disease in 2017, although like many people, he had symptoms for, I think, at least 10 years.

I am involved in the caregiver support program here in Colorado, which I can share more about. My husband is seen both at the VA in Denver as well as at the University of Colorado. You were mentioning, Corlynn, that you can do both. You can see someone in the community, and you can see someone within the VA, and he does both. He likes doing that. He feels like he gets more information and he gets more support with doing it in both places.

In terms of our journey, it's really interesting because when Gary was first diagnosed in 2017, I suspected he had Parkinson's for a long time. He was really reticent to bring it up to his doctor. I kept saying, I think you have Parkinson's disease. I think you need to bring this up. Finally, I made a whole list of symptoms that he had, and I said, when you go to see your PCP at the VA, please take these with you. He jokes and says it was like I stapled them to his forehead to take to his appointment.

But it was effective. He took them in, and his doctor paid attention to him. He did a brief exam and said, "Barbara may be right. I think you need to see a movement disorder specialist." The next step was doing that through the VA, and he got a diagnosis. It was very abrupt. It was very difficult.

But we've come a long way since then. In the beginning, he did not want to tell anyone he had Parkinson's disease. He hardly even wanted to discuss it with me. We went for several months where he didn't want me to tell my sister or a close friend, and it was very difficult for him to talk about it. But now, we've come a long way. Almost eight years, and we're both ambassadors for the Parkinson's Foundation. We do presentations on the hospital safety guide, and we do a lot of work in the community. It's a process.

It is a process of growth and sharing and grieving and coming to terms with the journey of the disease.

Crista Ellis 00:53:10
Thank you for sharing, Barbara. I would love if my team could open the chat. I would like to ask the community here: do you also find, was your beginning sort of hush-hush, don't tell anyone about it? Say "me too" in the chat, "yes for us" as well. I would love to validate Barbara's experience that many of our community members, yeah, we're getting lots of yeses, feel that way when we're diagnosed.

Do you see this chat, Barbara? Yeah. So many saying absolutely. Thank you for sharing. As I continue, Caroline says, nope, we were ready to bite the bullet. That's great.

Corlynn Hullfish 00:53:53
Good.

Crista Ellis 00:53:54
It's important for people to hear your story of Gary didn't want to speak to it. I know it was like a six- to eight-week, couple-month journey before he felt comfortable enough to start exploring resources and possibilities. Corlynn, do you find that this is a common pattern with veterans living with Parkinson's?

Corlynn Hullfish 00:54:19
Yeah, absolutely. I think our veteran population, they're sort of known for being very self-sufficient. They don't necessarily want to ask for help. I think it can be really hard for them to come to terms with that something has happened here and that they may need to seek help. We do hope that we're able to provide that at the VA.

Crista Ellis 00:54:40
Yeah.

I'm also seeing in the chat that it's kind of mixed. There are some people saying, yeah, we didn't want to talk about it, and there are some people saying we were open to it. We were relieved to find an answer. Barbara, could you speak a little bit to that diagnosis, the day of being diagnosed with Parkinson's, what your reaction and your response was as his partner?

Barbara Leffler 00:55:06
Sure. Well, I was relieved because I knew that he had this, about 13 symptoms. But I was also very, very sad because I didn't want to be right. I didn't want him to have that diagnosis. I have a background as both a psychologist and a nurse, and I had seen people with Parkinson's. I knew something about the journey, and I did not want him to have Parkinson's disease. It was very sad for me, even though it was a relief to know what he had.

The other thing was because he didn't want me to talk about it with anyone initially, it was so hard for me to deal with it by myself because I felt so sad for him, so sad for us, but also respectful of his process, that he needed time. I know that I process things more quickly. Our styles are different, and he just needs more time. I knew that he would come around. I had faith in that. In the meantime, I did tons of research. I explored all the research. I learned about the Parkinson's Foundation. I learned about Davis Phinney. I learned about Michael J. Fox. I went online.

I found as many resources as I could so that we had that in our back pocket, so to speak, for when he was ready to look at that.

Crista Ellis 00:56:32
Thanks for sharing, Barbara. Corlynn and Barbara, I'd love to propose a question to both of you. There have been some similar questions, common questions related to shifting the attitude. One of our attendees asked what strategies or practices can support caregivers to maintain this resilient and positive mindset for supporting their loved one. They write, and they quote, "I just feel done."

How can we shift our perspective?

Corlynn Hullfish 00:57:09
Yeah, I mean, I think that can be really difficult. There are so many different aspects of Parkinson's that can be really challenging, both for people with Parkinson's and for their caregivers, for their care partners. You'll hear me switch between those because at the VA, we use the word caregiver.

In the Parkinson's world, we use the word care partner. I think the partner piece of it can be really useful in talking about ways that you can join with that person. I also do hear people say that I'm done, and I'm sort of curious if apathy is one of those reasons that you're feeling a little bit done, because I think that one can be really challenging. But trying to figure out ways that you can connect together to do certain things together, both at the VA and in the community, and just figuring out what other resources are out there to support you.

We certainly have some here, but I really do think if you're able to, ideally, if you can find an in-person community for Parkinson's, I hear from a lot of people that, I heard from somebody this morning that they go to Rock Steady Boxing. He goes in for boxing, and then she's hanging out with the people that brought their person for Rock Steady Boxing. Just connecting with those people, I think, really helps you not feel so alone. There are other people that get it and know exactly what you're talking about.

I think anytime you walk into a space or show up at a virtual space where other people know the thing that you're dealing with without you having to explain it, then you can get right to the important part of supporting each other without having to be the person in the room who goes, they go, "Oh, what is that and what does that do?" And you're like, okay, let me educate everybody again. You don't have to do that with these people. They get it.

They know.

Crista Ellis 00:59:02
I can hear the sense of relief being in a community, a room full of people who get it and they know. What sense of reprieve that offers a care partner. Barbara, any more to add to what strategies or practices might help us maintain a more resilient or positive frame of mind when we're sick?

Barbara Leffler 00:59:24
Something that helped us as a couple but also helped me individually is that within six months, we got into the PD Self-Efficacy Program, which was about an eight-month program. It's now part of Davis Phinney, and since COVID, it's virtual. You can just go on the Davis Phinney Foundation and find out about that, but that was a lifesaver for us. It dealt with every single aspect of Parkinson's disease, and you were with people. There were about 24 of us over this period of about eight months where we met in person and shared and learned together.

Then we formed a smaller support group that came out of that, that we are still connected with. I'm in touch with the care partners in that group every week, and it makes so much difference to have people that you can rely on. The other thing that I do is I do some things with Senior Planet. I do tai chi a couple times a week online with Senior Planet.

It's a lifesaver for me. I just love it so much. It's a mindful movement that really sustains me. Even if you can't make a class, you can look on YouTube for it and you can do one anytime you want. I do regular meditation, gardening, being outside, being in nature, picking up the phone, calling friends. You're not alone. You're really not alone, but you have to make an effort to connect. You have to make that effort. So it's work, but it's so worth it.

Corlynn Hullfish 01:01:04
I really love that, Barbara, that you just talked about taking care of yourself in this because, again, I think that piece can get lost so easily. You love your tai chi and you make a point to do it. Sometimes it's nice to do things together, but it is also really important in any relationship, with Parkinson's or not, to carve out time for yourself. I think that may be a piece of the puzzle for a lot of people too.

Barbara Leffler 01:01:31
In terms of the VA caregiver support, too, two of the things that I do here in Colorado, which I love, and they're both on Zoom and part of our general caregiver program here, is I'm in a book club, which is really a support group, and it's fabulous. We meet every week. I'm also in a writing group, and it's so powerful. I look for those things, and I look forward to them. What's really interesting is, Gary was in the Army a long time ago.

He served six and a half years, and he is not retired Army. He once served. For a long time, I didn't really associate myself as being part of a caregiver program within Veterans Affairs. As part of my research, I kept seeing this, oh, there's a caregiver program, there's a caregiver program. Finally, through just a serendipity kind of thing, Gary and I were volunteering in the community at a conference, and we had a table for the Parkinson's Foundation.

The social worker who is in your position here came up to the table and had a conversation with Gary, and it came up that he was a veteran. Anyway, I got connected. Long story short, she's the social worker I work with here in Denver. What a small world. It's a lifesaver for me, and I belong, and I didn't know that I would belong.

I kept thinking, oh, these are for people that are 20 years in the military and they're retirees, and we're not. I didn't know if I would fit with that program. I went through it, went through the interviews and evaluation, and I do fit. It feels good to me. It's a place that I belong.

Corlynn Hullfish 01:03:37
Yeah.

I'm so glad to hear that. That's really fantastic. I think your situation's probably more common. We have more people that, especially with Parkinson's, we have a lot of veterans who were drafted and were in Vietnam for a fairly short period of time, and now have Parkinson's. That is a lot of our caregivers, not necessarily veterans who were lifelong military members. I'm so glad that you were able to find that. I think our program really is about serving you as you serve somebody who served.

That's what we want to do: sort of wrap ourselves around you, the caregiver, because we recognize that you're bearing some of the burden of service as well. We want to honor that.

Crista Ellis 01:04:26
Barbara, I'd love to celebrate you naming that it took effort. That's a theme that I continue to hear, the work that is required if we want to support ourselves. It does take energy, it takes time and it takes effort to care for ourselves and to care for others. Just framing that as personal effort, it requires us to have the desire to want to change something, right? What we don't change, we're choosing, and what we're choosing, we're not changing.

If we're seeking some kind of change, whether that is support or finding some kind of way out of the Parkinson's arena, right? Maybe our lives are starting to feel a little consumed by Parkinson's or consumed by my role of being a caregiver. Something needs to change, and we have to, as our own advocates, be able, comfortable and courageous enough to seek that change, to seek those resources. I just want to celebrate you taking those steps to do that for yourself, which ultimately is providing support to Gary as well.

Because when we feel supported, we can support others with authenticity and integrity and compassion.

Barbara Leffler 01:05:50
Thank you, Krista. Something else I learned in a new way in being part of the caregivers program, I'm thinking about a discussion that we had at one point in a group that I'm in, is that when we allow people to help us, we're giving them a gift. Think about what it feels like when you see someone going through a difficult time and you want to do something for them, but you're at a loss of what you can do. You're really giving them a gift when you tell them, "Well, I could use this," or if they offer, "Could I do this for you?"

Saying yes, because it makes them feel good too. They want to help. People want to help us, and we want to support each other. I feel good when I'm able to do that for someone.

Crista Ellis 01:06:43
Exactly. It is a gift to provide support to others. So don't take that gift away from someone else who's so eager to give it. Thanks for sharing that.

Corlynn Hullfish 01:06:54
Yeah. No, I very much appreciate that as well. I think that again, sometimes we just sort of brush people off when they want to help because, and sometimes it does feel like a little bit of work on your own part to figure out something to hand to somebody else to do. But once you do that, that person then knows how to do it, and they can keep helping you with that. So it's sort of like a one-time piece of work on your part so that it keeps that other person engaged.

I do really think, and I think this sometimes is really true for adult children too, a lot of times I hear from people who say, I don't want to burden my children with this. They don't have time. They've got their own kids. That is all true, but there may be a few things that they may be able to help with every week if they only knew. I think a lot of times people hide what's really happening at home. They don't want their kids to see that maybe the veteran's been struggling and that the care partner's been struggling with that care. I'm not saying every family is happy to do that, but I think for a lot of families, kids would really be happy to step in if they knew.

Crista Ellis 01:07:58
Mhm.

Barbara Leffler 01:07:59
This just reminded me of something we went through in the spring. I had some surgery, and I was really concerned about Gary's stress level because stress makes Parkinson's symptoms worse. I was just concerned that taking care of me for really the most intense part would have been about 48 to 72 hours after my surgery. I was really concerned about him. So I went to a group of our neighbors. We live in a sweet little community. It's very supportive.

I went to a few of our neighbors and told them and said, "Is it possible for you to reach out to Gary?" And they said, "Well, how would you like us to do that? Should we bring dinner?" So a group of them organized bringing dinner, a different couple or people every night for a few nights. Not only were they so happy to do it, they got into it. They showed up at the door with these beautiful baskets of fully prepared dinner.

A cute one was the woman showed up with the dinner, and it was all beautifully plated, and her husband was standing behind her with a glass of wine. This went on for night after night for pretty much the first week. When I arranged it, Gary said, I don't need this. I'm fine.

I don't need this. We've got soup in the freezer. We've got this. We've got that. He said, "You don't have to do that." He was so glad that he had that, and he was very, very grateful. He took so much time then in writing everybody a note and thanking them. Then in the summer, we were able to have them all over to dinner outside on the patio and thank them in a more full way. But again, that took work on my part. He was not happy with it.

At first, he didn't think he needed it, but he said, no, you were right. I needed it.

Corlynn Hullfish 01:10:13
Yeah, and it's about so much more than the, I mean, I'm sure the food was fantastic, but it's that human connection. It's that somebody is checking in on me and knows that I'm here.

Barbara Leffler 01:10:24
Exactly.

Crista Ellis 01:10:25
One of my most favorite ways of feeling loved is being provided with a meal.

So that's a beautiful testament of taking a serious situation, Barbara, you had surgery, and someone asking, how can we help? And you delegating, right? That's a skill. This is what would be helpful to me. They made it a luxurious experience for everyone, and as Corlynn highlighted, it made an opportunity for human connection. Now I imagine neighbors are a little bit closer and share a bottle of wine every now and again.

Barbara Leffler 01:11:03
Yeah.

Crista Ellis 01:11:05
Thank you for sharing your experience, Barbara. I'd love to get through a lot of these questions that we have for you, Corlynn, Barbara. Are there any final remarks that you'd like to make before I let you go?

Barbara Leffler 01:11:20
I would say don't be afraid to reach out. You're not alone. You're not alone unless you choose to be. There are a lot of connections to be made out there. A lot of people are going through what you're going through. So just know that there are many, many resources within the VA. The Building Better Caregivers program, I've been in that as well as the other things that I've been talking about. So there are so many resources. You might have to ask about them because you may not always hear about them.

I wasn't told by Gary's medical caregiver, "Do you know about the caregivers program within the VA?" I wasn't told about that. I had to find out about it myself. So just keeping that in mind, there's a lot for you out there. You just have to look for it and ask for it.

Crista Ellis 01:12:16
Yeah. Ask the questions. Thank you. Appreciate.

Corlynn Hullfish 01:12:21
Thank you, Barbara.

Crista Ellis 01:12:22
Sorry, and also giving so much love and thanks to Gary for sharing his, you know, it was so hush-hush at first, and now your whole story's out there. So many thanks to both of you for sharing and for supporting our community in this way.

Barbara Leffler 01:12:38
Our pleasure, really. It's an honor.

Crista Ellis 01:12:41
All right, thanks, Barbara.

Corlynn, we have so many questions to get through, and that just tells me that this information is needed. So many people are still on with us right now, which is even more validating that we're doing something right here. Let's get through some of the questions in the 15 minutes that we have together. So, DT, thanks for all your questions, DT.

They're asking, how can care partners address situations where a VA neurologist doesn't refer a veteran to available resources, such as a movement disorder clinic or a PADRECC or a VA hospital that they say leads Parkinson's care? How do we as care partners navigate our VA neurologist not referring us to specialty programs?

Corlynn Hullfish 01:13:35
Yeah. I know that's always tricky, and we do get calls from people all the time who say, ooh gosh, I want a second opinion, and I'm not sure how my doctor's going to feel about that. A good doctor should be totally fine with you getting as many opinions as you feel comfortable with.

That being said, also, if they're not comfortable with it, that might be a little uncomfortable for everybody, but also it's totally within your rights. So I'd encourage you to reach out. Certainly one step would be to say, "I was just on this call. I heard about this thing called the PADRECC and these associated sites. This is the one that's closest to us, and we would like a referral to that, please."

But you can also look on the website and see what sites are closest to you and just give them a call directly and see if you can set up an appointment. While it's certainly nice to go through your doctor, and I think would be the best way to go, you're under no obligation to do that. You can just reach out for help wherever you think it would be most appropriate. Hopefully your doctor says, oh, I just didn't think about it. It's not that close to us. It just didn't occur to me. It's not necessarily that they're not trying to be helpful in that way.

You'd be surprised how many people within the VA system don't know that we have PADRECCs at all. Doing this work, I've really been surprised to find that out. It may just be a lack of knowledge too.

Crista Ellis 01:15:05
Yeah, and there's so much pressure on our doctors to know everything, right? What a gift it is to have a patient who can say, "Hey doc, I just learned about a PADRECC. Did you know that this existed?" And they say, "Oh, I didn't know." There could be just that line of miscommunication. So I'm hearing Corlynn, again, echoing what Barbara shared, just ask the questions. It could feel a little uncomfortable at first, and giving our physicians grace. They just may not know.

That question's been asked several times: how do we advocate for our neurologists not referring us to services in the area? What I'm hearing the answer is, ask the question yourself. Now that you have this information, ask the questions for these services.

Corlynn Hullfish 01:15:52
Yeah. It's a huge system, so I think sometimes we assume that everybody in the VA knows everything that's available in the VA. But I can just tell you it feels almost impossible to know everything that's available. So if you do see something and nobody's mentioned it to you, just like Barbara said, ask. It really may be that the person in front of you isn't aware either.

Crista Ellis 01:16:14
Yeah. Next question, Corlynn. How does a caregiver manage apathy in their veteran?

Corlynn Hullfish 01:16:22
It's really, it's really a tough one. I mean, I've heard some people kind of use the saying, just do it. Meaning that rather than waiting for the veteran to say, oh, that's a good idea, you're probably not going to hear that if the person's really struggling with apathy, so it has to be more directional, which is also why this is exhausting as a care partner because that does put you in charge of kind of everything, which is a lot. But let's say, rather than saying, do you want to go for a walk, you may just say, we're going for a walk. Here's your shoes.

Let's go. Figuring out if there's something that entices the veteran to want to do something, if there's something you can pair with it, if the coffee shop happens to be a place that the veteran enjoys, maybe take a walk to the coffee shop. So you may just have to get creative. But I'm not going to tell you that it's not exhausting because when you have to be somebody else's get-up-and-go, that can be really difficult. It is really just a matter of, you know, just do it and continuing to encourage and being that cheerleader.

Crista Ellis 01:17:29
Thanks for offering that, Corlynn. It's helpful to encourage us to use the militant style. Here's your shoes. We're going for a walk.

Corlynn Hullfish 01:17:39
Yeah. Well, you know what? Somebody recently told me that they've been thinking about the idea that some of our military members are used to following orders. The idea of directing them in such a way that it is an order, in the case of dementia, you may be able to say, hey, the general called and he said we have to go do this thing, so let's go. If you're dealing with somebody who does not have a cognitive issue and not a very serious one, that's obviously not an okay thing to do, but the idea that, yeah, they've been trained to follow orders and maybe this is something you can incorporate in some way.

But I think sometimes we do give options. I'm sure there are many times where somebody's given me an option and I've thought, actually, probably the best example is I tend to be a homebody, and somebody asks me, do you want to go out? My instinct is like, no, I don't. But when I do go out, it's great, and I'm so glad that I did. I think apathy is a little bit like that too. Once you can get going, it kind of is like, oh, okay, all right, I do enjoy this. I do want to be here.

Crista Ellis 01:18:47
Yeah. It's motivating. Yes, you're the militant, and then once we get there, we get going. It's a good time, most often.

Corlynn, there's a question here, and I'll ask my colleagues if we could put a link in the chat for our palliative care to offer a little bit more context. Trish says that we've been recommended to enter into palliative care. Can you explain what they can expect in palliative care?

Corlynn Hullfish 01:19:17
Sure. This may vary from VA to VA, so I can just tell you about my experience at our VA. What it tends to be is usually kind of a way to coordinate care. So it doesn't necessarily, it's not hospice. There is no expectation of end of life being anywhere near where you are. It really is available to anybody with a chronic condition. So Parkinson's certainly qualifies. It's a way to sort of coordinate that care.

It's somebody taking a look through the chart and really looking at everybody, the neurologist, the cardiologist, the primary care doctor, and trying to bring all of that together so that it makes more sense for the patient. Oftentimes, that care is delivered by a nurse practitioner, although not always. I always say that if somebody's recommended palliative care to you, take them up on it. It's really just a little bit of extra, some extra eyes looking at the whole case.

Crista Ellis 01:20:20
Palliative care can be very supportive. I kind of mirror it with case management, elevated, through looking through the chart and helping us coordinate care. Thank you for highlighting that, Corlynn. The Parkinson's Foundation has an entire palliative care initiative if you're looking to learn more about palliative care, and I imagine too, the VA can help support that as well.

There is a question here about getting some confusing information from their VA primary doc and the nurse saying that they can't use a non-VA doc, a Veterans Affairs doctor. She says the non-VA doctor is incredibly and highly integrated into the local medical community and works closely with the non-VA Parkinson's disease doctor, and that she's been given outstanding support. Is this true? Can we not have both?

Corlynn Hullfish 01:21:26
No, you absolutely can have both. Again, at least where I am, and I can't imagine that would be different across the country. As long as you're tied into VA health care, as long as you see a doctor once a year, if you prefer to get the rest of your care in the community, that's totally reasonable. You should be able to have both. Ideally, maybe those two doctors can even speak to each other and coordinate care. But there shouldn't be a reason. It is your right to do that.

Crista Ellis 01:21:56
Thanks for sharing that, Corlynn. I had a hunch. I'm pretty sure I heard that it's absolutely possible to have both doctors.

Jane writes in, after 34 years of Army service, my husband discovered that we do not qualify for VA benefits beyond TRICARE due to income limits. If I recall correctly, Jane said that we made too much money. She mentions that we've heard about a VA companion program. Can you share more about it and whether its eligibility requirements are as strict as other VA programs?

Corlynn Hullfish 01:22:31
Anything other than, I mean, if you're talking about the Caregiver Support Program, I can speak to that, but I will say the Veterans Benefits Administration is also very large. That's probably a question that would be better suited to them. So I would direct you to your county veterans affairs office or, again, to a VSO, a Veteran Service Organization. An example would be the VFW, the American Legion, Disabled American Veterans, and they probably can answer that better than I can.

There are a lot of nuances around who qualifies for what, when their military service was, was it combat service, there are all sorts of different caveats. I wouldn't want to give you bad information on that, so that's where I would check it out.

Crista Ellis 01:23:22
Thanks, Corlynn, for differentiating the two systems, right? They're very comprehensive systems. Like Barbara mentioned, and you as well, we don't know it all. We have to ask the questions. Thank you for asking that question, and then for referring us to another resource that we could research for ourselves. So thanks for that guidance, Corlynn.

There is a question from DT, and they're asking again, let's speak to the caregiver support system that you provide, Corlynn. DT asks, how does the VA help to support care partners? I know you went into depth in your presentation, so DT, we can always refer to the recording to get deeper into it. But Corlynn, as we come to the end of our time together, could you please just high-level give us more information real quick about the caregiver support program that you provide and how people can register for it?

Corlynn Hullfish 01:24:24
Yeah, absolutely. Again, it's really two parts. One part is support and education, and the support and education that's available is going to vary from VA Caregiver Support Program to VA Caregiver Support Program. But what we do, a lot of us offer support groups, and we offer these education programs. That is really, again, open to any veteran enrolled in VA health care. What you would do is you would call your local VA Caregiver Support Program, and for PGCSS, which is our non-paid stipend program, you would just ask to be enrolled. As long as the veteran agrees that you can be listed as a caregiver in their chart, they would go ahead and then open a chart for you.

We do keep veteran and caregiver information separate for privacy reasons. That would be a fairly easy process. For applying for the paid stipend program, which is the Program of Comprehensive Assistance for Family Caregivers, that process is a little bit, I wouldn't say it's difficult, it's actually pretty straightforward, but you would need to qualify for it. One of the things that needs to happen is the veteran has to be 70% service-connected or higher and have care needs, need help with activities of daily living. If those two things are true, you would go ahead and apply.

The process typically happens within a 90-day period. So, by government standards, it's relatively quick. I would encourage you, if you think that you could be somebody in that category, to go ahead and apply using the link online or download and print the application. Again, that program comes with a stipend that would pay the caregiver to help the veteran. That's a really great benefit that's available. But for either program, we do offer support and education.

Crista Ellis 01:26:12
Do you know, and this is a question that Kathy's asking, are there specific groups or cohorts that are for adult children caring for a loved one who is a veteran with Parkinson's? Or perhaps maybe the group is diverse and there are adult children in these groups that they could relate with?

Corlynn Hullfish 01:26:33
Yes. Both of those things are true. Again, that will vary from Caregiver Support Program to Caregiver Support Program. I know at our VA, we actually have an adult child group that'll be starting in January. But we also do have a lot of our caregivers who are adult children who are enrolled. We also have a lot of spouses. Sometimes we even have friends and neighbors that are enrolled.

Sometimes, especially in our general program, multiple people can be enrolled. Sometimes there's a spouse and an adult child that will be involved in our program. So we really try to provide as much support as we can. Again, we want to honor the service that you provide to somebody who has served our country.

Crista Ellis 01:27:15
Thank you, Corlynn. As we wrap up our time together, any final remarks that you might like to share with our community here?

Corlynn Hullfish 01:27:24
Just that I really appreciate all of your questions, the passion that you have. I really share that passion. I really think that the work we do around Parkinson's is important, and I think that the more that we talk about it, the more people will know, and we can kind of eliminate some of that stigma and really have folks come to the table.

Crista Ellis 01:27:44
Great. Thank you so much, Corlynn. I really appreciate your guidance and expertise today, bringing awareness to important resources that are available to us as care partners for someone living with Parkinson's disease. Sincerely appreciate the work that you do for us.

Corlynn Hullfish 01:28:00
Thank you. Thank you for having me.

Crista Ellis 01:28:02
Once again, thank you to our sponsors, Don and Lorraine Freeberg Foundation, who makes these webinars possible for our community. So many thanks to Don and Lorraine Freeberg Foundation for their support. Here's that link again if you're curious to explore resources specific to veterans and care partners impacted by a veteran living with Parkinson's. That link is Parkinson.org/Veterans. And we're here for you. If you had a question that didn't get answered today, please don't hesitate to reach out to the Parkinson's Foundation Helpline. The number and the email are there on the screen. We have a comprehensive website there as well.

And just reminding you that today's program was recorded. We will send a full list of the resources that Corlynn mentioned so sweetly to you in an email in about one week, and that will also include the recording. So appreciate you all for your attendance, for your presence, and for your engagement in our program today. It's really validating to know that the work that we're doing is being responded to by the community, by you showing up. So thank you for continuing to ask questions and for showing up for yourselves. I really want to celebrate and acknowledge that. All right, my friends, until soon. Be well.