“Flying Solo: Alone with PD” – Panel Discussion Notes

“Flying Solo: Alone with PD” – Panel Discussion Notes

In December 2020, Parkinson and Movement Disorder (PMD) Alliance hosted a panel discussion on people living alone with Parkinson’s disease (PD). It featured two speakers, an aging life care specialist and a social worker, who talked about the importance of having a care system around you even if you are living independently from family or a caregiver.

This discussion was recorded and is available on the PMD Alliance YouTube page.

I listened to this conversation and am sharing my notes below. (In the question-and-answer section, there was only one question.)

For additional resources on staying independent with Parkinson’s disease, see this Stanford Parkinson’s Community Outreach webpage.

– August Besser

“Flying Solo: Alone with PD” – Panel Discussion Notes

Webinar Host: PMD Alliance

December 3, 2020

Summary by August Besser, Stanford Parkinson’s Community Outreach

This panel discussion had two speakers and a moderator:

  • Amy O’Rourke, Aging Life Care Specialist
  • Anissa Mitchell, social worker, PMD Alliance
  • Moderator: Sarah Jones, PMD Alliance

Sarah Jones: Thank you both for joining us. We talked a little bit about who might fit into the “flying solo” category within Parkinson’s disease. Would either of you like to elaborate on that?

Anissa Mitchell: I feel like the obvious is those who are single. Single because they never married, single because they’re widowed, or divorced, or separated. We have people that maybe have family members in the area, but they don’t live with them. We have people that may have a spouse or a partner that lives with them, but they are not capable of serving as a support person to them because of their own medical condition. I have even run into the situation where the person with Parkinson’s was the caregiver to the other person. I have run into couples who both have Parkinson’s a few times. There was actually a couple who were both widowed, met at a support group, fell in love, and got married. The wife of that couple ended up serving as a care partner to her husband who is a little more advanced than the disease when they got married. What about you, Amy?

Amy O’Rourke: When I saw the title “Flying Solo”, I thought of a gentleman who was a former client of mine who had six children and all wanted him to do something that he didn’t want to do. I considered him “flying solo” because he really was on his own, the kids weren’t supporting him and what he wanted. But I would challenge you to be thinking about is, “do you have someone that is in sync with you”? You’re flying solo if you don’t have someone in sync with you, whether it’s a friend, spouse, or a child. I would hope that everyone who is on this call is thinking about this now, and if we’re creating discomfort with the people on this call, I will consider my job well done. Out of this discomfort, you can create some action steps that can help you. One of the reasons that people end up flying solo inadvertently is because they’re too prideful to ask for help. I will tell you over and over again, pride is the barrier to a successful lifestyle with a chronic condition. You’re hanging on for dear life, you won’t let any help in, you don’t think it’s time, and I will tell you from my own history, when I need help the most is when I am least apt to ask for it. My husband will elbow me really hard and say, “do you want some help with this? Don’t you think you should call someone and ask for help”? Think about your world and ask yourself, “am I flying solo”? And then start listening to us with that in mind.

Sarah: That is so powerful and so true. Thank you for helping us expand how we look at “flying solo”. What are so obvious things people are thinking about when they’re living alone or flying solo, especially during the COVID-19 pandemic and the holidays? 

Anissa: The obvious one to me is “isolation”, which we’re all feeling to some degree right now. We’re all feeling a sense of isolation from our friends and family. That is a big issue for the people in the Parkinson community anyway for a lot of different reasons. When you’re in a situation where you may be in the house by yourself, or your loved one in the home with you may not be able to serve as that resource, that isolation is a huge problem. We know that not even the socialization and impact that has on us not just in how we feel mentally, but cognitively. The impact that social isolation can have on us is great. Living alone is hard enough to navigate outside of COVID. COVID has added an additional layer that we have to try to figure out, “how do we manage this”? Thankfully, we have tools like Zoom, but we have to be intentional about it. What I have found, is if you’re feeling apathetic, if you have a lack of motivation, or depression, you might not reach out. If you’re not reaching out, and people aren’t thinking to reach out to you, that becomes a vicious cycle you can spiral down. We call it “home habituation”. My husband just told me the other day, “did you realize you haven’t left the house since Saturday”? I thought, “oh wow”! The more I don’t do, the more I tend not to do, it might just be unnatural for me to do it. I don’t think about it, it’s not triggering for me. That is a problem that we all have to deal with, but luckily, I had someone who noticed that and pointed it out to me. If someone is dealing with depression or anxiety, and that can tend to cause isolation additionally outside of our stay-at-home situation, who is checking on them? How are they doing? What if they are dealing with someone that is struggling with hallucinations, and they’re starting to have some minor hallucinations or even impulse control disorders? These are real things that people deal with that if you don’t have someone that is right there checking on you and asking you about these things, it can be overwhelming. Amy, what are some practical things that our members on this call can do to be more mindful and aware of these instances?

Amy: When I hear the word isolation, I will often think of prisoner work camps. People get put in isolation and tortured. That’s the extreme. When you think about it, you’re at home isolating, you become a little whacky because you’re not exposed to other people. The research on isolation and increased confusion is so well-researched. Parkinson’s has a dementia-coinciding diagnosis along with it. Energy begets energy. You put out energy to get energy. One of the things that I do for myself that I think works across the board with our different diagnoses is, if I’ve been at home alone and in my pajamas or something, I don’t feel that great about myself. You get up, you get dress, you get ready for the day. Also, if you haven’t spoken to another person, where can I speak to another person? If I’ve been sitting at home thinking about myself, I need to balance that out by thinking about someone else. Probably one of the best little secrets is giving. It balances out the isolation of being in your head for long periods of time. Are there organizations that would appreciate you calling people that are shut in that you can check in with? Are there groups you can help, like in your neighborhood? Is there someone out there walking their dogs that you can go out and wave to them and say nice things to them? Can you bring someone’s newspaper from the bottom of the driveway to the top of the driveway? What is going on in the world around you, and what can you contribute to that world to help you get out of your isolation? If you’re early on in the diagnosis, if your recently diagnosis, I’d like to think about this like a muscle memory. Put in your movement and getting out of isolation as a daily habit that you get into. Nobody likes to exercise. Everyone signs up for exercise programs in January, by March they’ve dropped out. I’ve heard a client say: “I like my pets more than I like people”. And I like my pets too! But exercising is very important, to get your neurons firing, to get your blood pumping. Isolation in my mind is a contributor to increased dementia and depression. If you’re already given a diagnosis of Parkinson’s or other movement disorder, then you want to add a layer to prevent isolation and help give you a good quality of life for the rest of your years. 

Anissa: There’s a comment here that I want to address, and I think it’s really important to talk about: “What if there are no friends or family”? I’ve had people who’ve moved and didn’t know someone, especially now that we’re not getting out and interacting and getting to know people, that adds a layer additionally to that inability to connect with people. Let’s talk about that, what someone would do if they don’t have anyone. If you live alone, and you want people to know you and acknowledge you, and you haven’t been seen by the mailman, that’s a trigger that maybe something is wrong. Even if you don’t have someone that’s checking on you, making yourself known to the people that regularly visit you in your neighborhood, you can get them accustomed to seeing you. If someone that lives alone and doesn’t have anyone to turn to, what can they do to build those relationships and find accountability for their socialization?

Amy: This actually reminds me of a former client of mine who was an agoraphobic. When I went to visit her, she was staring out the window at all the people walking by. She knew everyone’s names, their pet’s names, their kids, their spouses, she knew everything about them. It was like watching a soap opera where she knew every character. They didn’t know her, but she knew them. To some degree, that kept her occupied and interested. It’s not the same as knowing them. Now, there are introverts in the world and there are extroverts in the world. There are people that are generally uncomfortable and it’s not in their skill set to get out to know people. It’s harder for some people who are born that way. It’s not good or bad, it’s just harder. One of my former business partners was an introvert, and she didn’t really like to reach out to people. For me, I would reach out to any of the religious organizations like churches, mosques, or temples, and see if you can be a member or participant in any of the programs that they have going on, either by Zoom or by phone. Reaching out may produce some anxiety, but I think that’s the first step to getting out of isolation is to get up and say “hello”. Insert yourself into the happenings of your neighborhood, or a club or organization that interests you. If you’re savvy with the Internet, start googling all of the arts organizations that have events going on online, like the opera. The problem with “do you have anybody who can be with you during the duration of your condition” is a national phenomenon. There aren’t paid people who could be with you for the rest of your life, unless you’re willing to pay for it, but you want somebody with you for the rest of your life who can check in on you. Be creative with the world your end and see if you can tap in to someone who can be a part of your life. Take interest in them before you expect them to take interest in you. That usually gets the energy going in a relationship faster. Be brave and ask about them first.

Anissa: Let’s go ahead and move into some of the practical issues that people living alone or with limited support systems need to figure out. With Parkinson’s being a progressive disease, as time goes on, whether it’s physical, cognitive, or what have you, the ability to do things like home maintenance, housework, and shopping can become challenging. There’s a variety of issues here, and it’s the issue of opportunity: having somebody that’s able to assist with that. It’s also the issue of willingness. It’s important that you make a choice before someone forces a choice on you out of crisis. It’s important to consider what your options are. Isolation and dealing with the emotional aspect are one thing. Physically, that’s a whole other thing. And they work together, because if you’re depressed or anxious or unmotivated and you’re isolated, it’s going to be harder when you get to addressing this next layer of issue which is: “What are you going to do when you start freezing and you’re not able to break your own freeze”? Who’s watching to make sure that you’re okay? It’s very important to be aware of these issues, and then work on what’s practical on your terms. Not everyone can afford to hire care people to come into the home, and you can only go so far without assistance, unless it’s a family member. You’re going to have to think now, this is a conversation that isn’t going to solve all of your specific issues, but it’s a conversation to get you thinking about dealing with these situations. If you don’t have the finances to hire someone to come in, what are your options? You really need to think about, “who’s going to take out the garbage when you cannot”? What’s going to happen if you have an emergency in the middle of the night? Do you have the ability to call for help? Do you have systems in place? Have you even thought about these things?

There was a brief intermission where Sarah Jones discussed the goals of PMD Alliance and the different activities they promote in order to provide the Parkinson’s community with information and resources.

Anissa: I want to address a couple comments here about trust. That is something that we put ourselves out there for hiring someone, whether it’s a contractor working on a house, a plumber, or an electrician, you bet your people. If they mess up, then you fire them and you move onto the next. That’s very laborious and frustrating, but if anything, if you’re hiring someone to come in, remember they work for you. An occupational therapist is a good place to start, to evaluate the safety of your home. Not only will they evaluate your bathroom, your bedroom, and your kitchen, they offer tools like adaptive devices to help out with the safety in your home. Instead of wasting your money on infomercial adaptive devices, ask the OT to help provide those for you. The more that you do for yourself, the more that you will be able to do for yourself. The OT may have other compensatory strategies to help you instead of devices. Having someone come in during COVID is a challenge, just like right now for any situation, and that’s just something you have to talk over what their precautions are. Amy, did you want weigh in on this?

Amy: When you have a diagnosis of Parkinson’s, or a movement disorder, or a neurological condition, a habit I see a lot of people get into is they want certainty. “This way is the right way, and that was the wrong way”. To the degree that you can get comfortable in what I call the “gray area”; an example would be “I really like being in my home and I really don’t want to leave my home, but I’m alone here”. Maybe in the decision to move to an area where there are more people, you get more security, but there’s a trade-off. There’s a compromise. You lose privacy, the comforts of your own home alone, but you gain the support of others. If you live within a community, and you’re an active part of the community, the longevity and the quality of longevity is shown to be more robust and healthier. If you are prone to wanting certainty before you take an action, there’s work that needs to be done, and you need to get comfortable in the gray area. The trade-off is: all right, I’m going to let someone take over this aspect for me, but I don’t have to worry about this anymore. That’s the gray area. At this stage of life, I want to do the things that I enjoy. I’m not going to want to mow my lawn, I’m not going to want to take my garbage out, I’m not going to want to cook. And then I can conserve my own energy for the things that I enjoy, which for me would be going to yoga, going for a walk, and having brunch with my girlfriends. There’re trade-offs with every decision you make.

Sarah: You bring up such a good point. It’s the intentional decision-making that you have to think about, not having decisions made for you. Do you have any tips to keep on top of your safety and management when it comes to making decisions? Maybe specifically financial decisions. 

Amy: When there are cognitive disorders present, you will not be the first person to find out. I would get an ally, and I would communicate with that ally, maybe hand write what you’re thinking. You set your own boundaries: if I miss X number of bills, if I wander off… You sign it, and you say, “it’s at this point I want you to step in and get me some help”. Whatever your action plan is, if you want your nephew to take over your finances, if you want care brought into the home for so many hours a day, whatever your plans are, write it down and agree that someone else is going to help you know that you really are at that stage.

Anissa: To add to that, you could work with an elder law attorney to formalize a lot of this. They can help you come up with some suggestions or ideas if you don’t have someone that you feel like you can trust or are comfortable with. Maybe that someone that is hired. You know that they’re being watched because you’re paying for that. And you don’t have to tell people the reason that you want to set up things, because your fear is that you’re losing your cognition. It’s just that: “I am single and anything can happen”. I even have my owns plans in place if something were to happen to my husband and I couldn’t speak for myself. I want to know that I have somebody who speaks for me and put things in place that I want. And Amy brings up a good point, where if you live alone, you might not notice the subtle changes. And that’s what a care partner is here to point out for you. You may not realize that you are repeating things multiple times, asking for someone to speak louder, and you don’t know how those might affect your decision making. Not to take away from your independence, but to give you independence. People think a lot of times they’re asking for help, using assistive devices, and asking for people to come in, is giving up independence. But I’d like to reframe that a little bit into extending your independence because you’re still in control, but you’re just getting a little supplemental help to it. You’re the one making that decision versus not doing so. If a crisis occurs, someone has to step in and make that decision for you, and it may not be the decision you wanted. 

To add a personal story: someone I know was reaching that elderly stage, to the point where their family members asked her to wear one of those life-saving buttons. She went out one day with family members, and she took off the pendant and put it in her purse because she didn’t want people to know about it. Well, one night she got up in the middle of the night and fell, and she was stuck there for days. Thankfully, she was found when people got suspicious that she didn’t check in. This example is a little extreme, but it ended up taking away her independence because she wasn’t able to do things on her own anymore. He had to go into the hospital, and then she had to go into a facility for some time. She had pretty significant pressure sores that required a lot of healing time. Her feeling like she was giving up her independence, is what caused her to lose her independence. Sometimes, admit that you need the extra help, and then find ways to do it.

Sarah: A lot of people in the comments are expressing their fear and discomfort with this topic. That’s not our intent, to make people afraid. Aging is difficult, and aging with Parkinson’s is even more challenging. The intention of this conversation is to get people to think about it, and to start preparing for any scenario. We want you to have hope about the future.

Question and Answer:

Q. Do you have a preference for assistive falling devices that are out there? I’m looking for something that is portable for my husband. 

A. There are a lot of devices out there, and it depends on what you want. I don’t have a product name, but we can have Sarah share some potential devices in the resources from this talk.