Category Archives: Caregiving – General

In June, the Parkinson’s Foundation (parkinson.org) hosted an event called “Caregiver Coffee Chat: Protecting Your Mental Health During COVID-19.”

This event featured Martha Anne Tudor, MEd, NCC, LAPC, who discusses how to protect your mental health while sheltering in place (or, slowly rejoining society). Her focus is on caregivers; however, the suggestions in this webinar apply to all of us. This chat contains one comment that is specific to Parkinson’s Disease.

Here’s an excerpt from the introductory remarks:

Most of the news right now isn’t good and there is a lot of uncertainty. We know about the human brain that we don’t do well with uncertainty. Our response is anxiety, worry, stress, and alarm. These initial reactions have been protective in history and have helped us survive. But with the current situation, with so much uncertainty, and no clear end in sight, it is easy to get stuck, and that can be damaging to our physical health, emotional health, immune systems and relationships. There are ways we can take control over how we respond to the things that are happening outside of our control. Uncertainty is always with us, and there are things we can do to not only survive but also come out more resilient.

The speaker encourages us to ask six questions of ourselves each day. She suggested that these are “quarantine-time” questions. However, these questions seem appropriate for every day, with or without a pandemic. The questions are: [Editor’s note: question #6 was re-worded.]

The archived recording of this webinar can be found on the Parkinson’s Foundation’s YouTube channel here:  https://youtu.be/6TTVenqalqo

Friend of Brain Support Network, Adrian Quintero, took notes during the caregiver chat and has shared them.

Robin

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Martha Anne Tudor, MEd, NCC, LAPC, is a Mental Health Counselor & Outreach Coordinator Movement and Memory Disorders Program, Department of Neurology, Augusta University/Medical College of Georgia.

Most of the news right now isn’t good and there is a lot of uncertainty. We know about the human brain that we don’t do well with uncertainty. Our response is anxiety, worry, stress, and alarm. These initial reactions have been protective in history and have helped us survive. But with the current situation, with so much uncertainty, and no clear end in sight, it is easy to get stuck, and that can be damaging to our physical health, emotional health, immune systems and relationships.

There are ways we can take control over how we respond to the things that are happening outside of our control. Uncertainty is always with us, and there are things we can do to not only survive but also come out more resilient.

Daily Questions

Martha Anne calls them “Quarantine Daily Questions,” although they are good anytime:

1. What am I grateful for today?

(Participants submit answers over chat. Many people said health of family, many others said nice weather)

We remember in times like this that our attitude and gratitude are not challenges, but they are choices we make.

There is research that shows an attitude of gratitude with improved immune systems. It can help to keep a journal and write 3 things at the end of the day that you’re thankful for.  These can be small things (a good movie, birds chirping, good cup of coffee). In a year you have 1,000 things you are thankful for. This can be a good resource when you are going through a challenging time. Many of these will probably still be true.

Some people have a habit of sharing over dinner with loved ones what went right that day. These types of things we really train ourselves, and the more we look for things to be grateful for, the more it becomes a habit to see it. We might have to be particularly proactive with this right now, as we are bombarded with stressful and scary information.

We need to remember there is good to help balance out the negativity. Another way we can do that is limit our exposure to the media, so we don’t dwell on what is going wrong. Perhaps checking news only once or twice a day, and filling the day with things like activities you enjoy, healing music, and positive relationships.

2. Who am I checking in on, or who am I connecting with today?

(Many participants said a family member, and others said a fitness buddy)

There are multiple levels of benefit to fitness programs such as boxing, as there is also an emotional/ social component to them as well (many programs are happening virtually right now).

Perhaps there is someone in your life who lives alone, or may be more isolated than others, that you can check in on. Isolation is of course so profound now. There aren’t in person fitness programs, church services, or support groups right now as we had before. Connecting with someone might be a phone call or a note you write. It’s important to remind ourselves we are not alone during this time; we are actually very much in it together.

Feelings of isolation are associated with negative health effects such as increased stress, decreased immune systems, etc.

3. What expectations of normal am I letting go of today?

(Participants said attending community events, sticking with schedules, shopping without anxiety)

There is very little that is normal right now. Getting groceries, exercising, even attending doctor appointments are all different these days. It’s important to remember this is probably not the best time to put a lot of pressure on ourselves to learn a new language, or tackle a big project. We are so bombarded with information that is unsettling and worrisome. There are many questions we don’t have answers to, and our nervous systems can barely keep up with what the latest information is about health, finances, and employment. This is a good time to practice some self-compassion, as it is a very stressful time. It is a lot to just wake up, be, and get through the day right now.

We do tend to do better when we are sticking to a schedule. This might be different right now, but it can help to try to get up at the same time everyday, as well as eat meals, exercise and go to bed around the same time everyday. Having some kind of routine can help reinforce a sense of security and control.

There are more options right now to participate in activities that don’t involve leaving your home.

4. How am I getting outside today?

(Participants said taking walks, taking a drive, doing yard work)

Research shows just getting outside/ being outside is so healthy and restorative. There is new research that shows just being around the color green outside is very soothing, and associated with lowering stress levels and being very comforting. The sounds of nature outside, such as birds, wind, stream, help us focus in the here and now, and step back from worry of tomorrow.

This touches on the mindfulness exercises that we know are so helpful. Parkinson.org hosts a Mindfulness Monday every Monday. These are techniques that you can carry with you anywhere you are.

5. How am I moving my body today?

(Participants said taking walks, walking the dog, virtual exercise, cleaning)

There is no way to count the research that we already have about the health benefits of moving your body. It doesn’t have to be a lot. 30 minutes a day is associated with optimum benefits. This could be chair exercises, a walk around the neighborhood, walking a dog (which can also help the isolation we may feel, as a conversation starter with people outdoors). Moving the body is associated with improved immune system and greater physical and psychological resilience. Really all areas of our health are positively impacted, and it may be one of the most powerful tools we have to take control of our own mental health.

6. How are you cultivating, creating or inviting beauty into your life today?

(Participants said gardening, spending time with a loved one)

You may notice many of these touch upon multiple areas. For example, gardening can be cultivating beauty, getting outside, and moving your body. Getting our hands in the dirt and watching something grow and bloom can be very therapeutic and counteract messages of doom and hopelessness.

Right now there are ways to virtually participate in museum tours, listen to opera or other musical performances, even visit parks and zoos, all through a screen.

Questions from participants

• My mother lives with me and relies on me solely for entertainment and interaction and won’t do things on her own. I also have two grandchildren I watch almost everyday. How do I juggle my life, especially in these times?

Many caregivers are finding themselves with these questions. Home health has ceased or diminished, we can’t attend support groups or spiritual gatherings or other outlets we used to have. This caregiver probably can’t make her mom chose anything different, but there are things the caregiver can make sure she is filling her own bucket. We cannot give out of an empty bucket. This caregiver should make sure she is getting some breaks, has people she can talk to, has some time she can get away, and that she is getting enough sleep and eating right, thinking of her own gratitude. Maybe there is something the mom and the kids can do together, a joint project like painting or growing plants.

• In terms of staying safe during these times, what kind of questions should someone be asking of a person to come into the home for caregiving support?

First off, it’s important to get the okay from your health care provider. No two people are exactly the same, and your provider will know more your particular risk level category. Next, find out from the organization/ agency what they are doing to take precautions. You can share this with your doctor to make sure this sounds reasonable. Also important is your own comfort level. Some people are more comfortable with no one coming in right now, while others might be more comfortable with what they were doing prior to the pandemic. The CDC guidelines are important to adhere to. We all have to take the guidelines, adhere to them, look at the risks, and find a way to live our lives, and decide with our loved ones how we are going to do that. When we feel like we have no choice, that can be profoundly depressing. Even in a circumstance like this, we all have choices.

• When you’re with someone all the time now, when you had breaks before, how do you manage the frustration that can come up?

This question doesn’t just apply to caregivers and those receiving care! There are parents homeschooling and couples together who are also asking this question. Being able to recognize and acknowledge the feelings we are having (anger, frustration, impatience) is a step in the right direction.

How can I handle these feelings? Taking a moment to step back, step away, practice deep breathing, going outside, all the self-regulation behaviors can really help here. There is the 4-7-8 breath which is breathe in for a count of 4, hold for a count of 7, and breathe out for a count of 8 (exhaling longer than inhaling). These can be ways to give our emotional brain a moment, which can help us respond instead of react.

When it comes to caregivers, they can often forget that they have needs that deserve care and attention too. Caregiver strain is real and can be devastating. For having conversations with people we are caring for, Martha Anne recommends coming from a place of respect, honor, love, and kindness. She says to hold the point of view of being on a team and a journey together, with both people needing to be able to go the distance. Often times the person being cared for feels guilt as well, and concern for how the caregiver is doing.

• What are some things a care partner needs to look out for in regards to their own mental health?

There is an excellent care partner summit that Parkinson’s Foundation hosted in May that is now available to view online and is a great resource (https://www.parkinson.org/Summit).

Ideally, as part of the plan from the beginning, care partners would add in their own support being part of the picture. A lot of times care partners think they can manage on their own, without having to ask for help. Asking for help is a wise decision.  

As for what to look out for, feelings of guilt, feeling ashamed, feeling guilty for feeling guilty, being short and irritated with the person receiving care, and examining self-talk. With Parkinson’s Disease, there can be symptoms that are extremely hard to deal with such as hallucinations, or the person becoming belligerent. The more you can get support and keep yourself healthy and strong, the more you can see what is the disorder/ pain and what is your loved one. We all need someone to talk to. This doesn’t have to be counseling, it can be good relationships, a neighbor, or spiritual mentor. Counseling is a good idea when you find yourself repeating behaviors you don’t really understand and that are causing more problems than they are helping.

Recently, the Parkinson Society of British Columbia (PSBC) offered a webinar for caregivers on coping with ambiguous loss and anticipatory grief, featuring Trevor Josephson, a counselor with Peace Arch Hospice Society. Mr. Josephson defined ambiguous loss as a type of loss that is unclear or without closure, and anticipatory grief as the feeling that one may experience when expecting a loss or change. He said:

Ambiguous loss can be a response to psychological absence – i.e., a loved one who is physically present but may not be emotionally or mentally available, whether due to dementia, mental illness, drug or alcohol use, or other factors – or physical absence – i.e., a loved one who is physically unavailable or living away from home.

Anticipatory grief may occur before a loss that is impending or imminent, often due to the loss of an ability or relationship due to progressive illness.

Mr. Josephson offered recommendations to caregivers for coping with and managing these feelings. He encouraged caregivers to “re-define hope” in order to “discover new landscapes of hope in a world of ambiguity.” He said:

Do your best to recognize and accept the changing aspects of the relationship. Adjust how you spend time with others, and focus on strengthening bonds with your family and friends. Be open to new connections as well. Increase your comfort with ambiguity and let go of the need to have answers or certainty. Adjust your expectations and see things as “good enough.

The speaker cited multiple books by the author Pauline Boss, MD, including the 2006 book, “Loss, Trauma, and Resilience.” To learn more about Dr. Boss, visit her website, www.ambiguousloss.com.

This webinar was recorded and can be found here:

https://www.youtube.com/watch?v=BsvLOTj6510&feature=youtu.be

Though this webinar was offered by an organization focused on Parkinson’s Disease (PD) and the two examples shared were about couples coping with PD, nothing in the webinar is PD-specific. …which is why we are posting the notes here.

Lauren Stroshane from Stanford Parkinson’s Community Outreach website attended the webinar and shared notes.

Robin

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Ambiguous loss and anticipatory grief
Webinar presented by the Parkinson Society British Columbia
March 25, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker, Trevor Josephson, is a clinical counselor and clinical manager at Peace Arch Hospice Society. He defined ambiguous loss as a type of loss that is unclear or without closure, and anticipatory grief as the feeling that one may experience when expecting a loss or change.

Ambiguous loss can be a response to psychological absence – i.e. a loved one who is physically present but may not be emotionally or mentally available, whether due to dementia, mental illness, drug or alcohol use, or other factors – or physical absence – i.e. a loved one who is physically unavailable or living away from home. Anticipatory grief may occur before a loss that is impending or imminent, often due to the loss of an ability or relationship due to progressive illness.

As Parkinson’s diseases progresses over time, many caregivers find themselves experiencing these kinds of loss and grief, which can lead to feeling isolated. Although discussing these issues is difficult, it is also important for anyone in a caring role.

True for BOTH ambiguous loss and anticipatory grief:

• A normal reaction to an uncommon loss experience
• Can compromise relationships
• Can result in complicated grief
• May threaten the ability to cope

Many aspects of personhood may be lost: lost aspects of former personality, loss of identity and sense of control over one’s life, loss of meaning in life, and loss of the expected or planned future. Family members may feel frozen, missing the person their loved one used to be, and yet the loved one is still there – just different. Families cope with grief in different ways, according to their cultural, spiritual background, past experiences, and resources available to them. 

Possible outcomes of these feelings can include a sense of sense of hopelessness or helplessness, uncertainty about one’s own identity, depression, anxiety, social isolation, and impeded grief. Complicated grief stretches on for a long time, sometimes years or even decades, and may make it difficult for someone to function.

What can help someone living with ambiguous loss?

The speaker cited works by Pauline Boss, MD, including her 2006 book, “Loss, Trauma, and Resilience.” The goal is to build resiliency to live with ambiguous loss or anticipatory grief long-term, as there may be no solution to make these feelings go away. Sometimes it is necessary to adjust our natural need for control and certainty in life, to accommodate change and factors over which we have little or no say.

What helps?

1. Finding or making meaning: making sense of your losses.
* Name your problem.
* Making meaning is a responsibility – no one else can do it for us.
* Reaching out for and accepting support from others.

2. Understanding the role of control: adjusting the need for control and accepting uncertainty.
* Accept lack of control.
* Decrease self-blame.
* Don’t focus on uncertainty.
* Focus on what you know and can control.

3. Who am I now? Weathering the change of identities: 
* Be honest about the changes in yourself and others.
* Discuss roles and expectations. You can include younger family members in this discussion as well; often, they want to be included.  
* Be open to change. 

Try to avoid negative thinking, such as thinking that you caused the situation, or that you should just “get over” your feelings. It is okay to normalize anger and guilt, but try to express your feelings in a healthy, non-harmful way. Accept ambiguity; practice both/and thinking: rather than feeling one specific way to the exclusion of other feelings, you can feel both love for the person you are caring for AND grief that they are no longer who they used to be.

Case study: Barb and Ed

Barb was diagnosed with PD in 2017. Her early stage symptoms included difficulty walking and tremor. Later, she developed more advanced symptoms such as difficulty eating certain foods and significant fatigue. She started having good and bad days. Her husband Ed is her care partner.

“Being part of a community helps. Staying connected with family and friends.” – Ed

Case study: Sharon and Don

Sharon was diagnosed in 2005 and lived at home with her husband Don, her primary caregiver. She started to have many falls leading to trips to the emergency department, with increasingly serious injuries from stitches, contusions, and cracked ribs, eventually to a broken neck. Don made the difficult decision to move her to a care facility in 2019.

“I really do miss my wife… who and what she was before the Parkinson’s but there’s nothing I can do to change that other than to recall and cherish good memories.” – Don

Redefining hope: discovering new landscapes of hope in a world of ambiguity

Do your best to recognize and accept the changing aspects of the relationship. Adjust how you spend time with others, and focus on strengthening bonds with your family and friends. Be open to new connections as well. Increase your comfort with ambiguity and let go of the need to have answers or certainty. Adjust your expectations and see things as “good enough.”

Advice from members of the audience who have personal experience with these feelings:

It can be hard to get yourself to a new support group due to the fear of the unknown. But think of it as doing something just for you, something necessary, and try to get there. It really helps.

Regular exercise, such as going out for walks, can really improve your mood as well.

Connect with neighbors and friends to prevent yourself from becoming isolated.

Takeaways:

• Naming these feelings makes coping easier.
• Ambiguous loss is more than just an individual experience; it is imbedded in the community.
• Ambiguous loss can change relationships with family and friends. Being flexible in one’s thinking style and perspective can help create meaning and hope.