On September 22, the Stanford Parkinson’s Community Outreach Program hosted a webinar with Dale Larson, PhD, to explore the challenges and rewards of the Parkinson’s caregiver’s journey and look at how you can care for yourself while caring for those you love.
For this talk Dr. Larson drew upon his book titled “The Helper’s Journey,” which focuses on caregiving, especially for professional caregivers. In it he posits that there’s a need to re-charge and to become resilient.
Research shows caregiver burnout is not inevitable. Whether you suffer caregiver burnout depends on your level of empathy for the care recipient, your confidence in being a caregiver, your ability to manage negative thoughts and feelings, and your level of social support.
All these factors are within a caregiver’s control. Adjusting these factors so that you not suffer burnout is the definition of resilience. Read through these notes and/or watch the webinar for specifics on how to adjust your circumstances and become resilient.
The webinar can be viewed on the Stanford APDA YouTube channel.
You can find more information about Parkinson’s caregiving in our Caregiver Corner, including coping with stress, anticipatory grief, hiring in-home care, moving to a facility, late-stage PD caregiving, hospice and palliative care, and advance care planning.
And now, on with my notes…
– Denise
“Dale Larson on The Caregiver’s Journey” – Webinar Notes
Webinar Host: Stanford Parkinson’s Community Outreach Program
Webinar Date: September 22, 2021
Speaker: Dale Larson, PhD, Professor, Counseling Psychology, Santa Clara University and Fellow, American Psychological Association
Summary by: Denise Dagan
Dr. Larson is a long-distance caregiver.
- His father had Parkinson’s and died from aspiration pneumonia some years ago.
- More recently, Jay, one of Dr. Larson’s best friends from his years at University of Chicago was diagnosed with Parkinson’s. Jay is a Zen Buddhist and has the support of his wife, who is a retired nurse. Jay can no longer drive and has hallucinations.
When asked about his experience having Parkinson’s, Jay told Dr. Larson, “Our obstacles are opportunities. Paying attention to what’s going on in my body is like meditating, everything is slowed down. Your daily life is your training.”
COVID-19
The COVID-19 pandemic has created stresses and strains for all of us, separating us from those we care for and creating a novel form of traumatic bereavement:
- 1/2 to 1 million people will have a more complicated form of grief, or mourning, and
- 5 to 10 million who will have a different kind of grief because they couldn’t be with their loved ones at time of death because of visitor restrictions at hospitals due to COVID.
Isolation
Psychologists study the effects of loneliness on physical and mental well-being. Caregiving and end-of-life are known for being isolating experiences.
- Friends and family members often don’t know what to say or how to help so they stop calling and visiting, leading to a lack of social support
- As caregiving demands increase it’s harder to find time to take a break (respite) to play sports, do hobbies, and socialize, further limiting interactions outside the home.
COVID-19 forced the closure of businesses and programs that provided social support. Social/physical distancing and self-quarantining led to further isolation for caregivers of all types.
The Difficult Side of Caregiving
There is a direct relationship between PD Symptoms and Caregiver Quality of Life (QoL). According to a 2020 study, PD-related symptoms, including difficulties with mobility, decreased emotional well-being, and nonmotor symptoms (like loss of taste and smell, sleep dysfunction, and hallucinations) uniquely predicted reduced QoL for caregivers (reduced frequency of personal and social activities, anxiety and depression, reduced self-care, and strain).
Interestingly, the total hours of caregiving not significantly related to reduced QoL
Study authors concluded, “It is possible that the provision of a higher level of care may provide meaning or purpose or a sense of connection for the caregiver. As a result, being a caregiver may be associated with more negative outcomes…but for people who are caregivers providing a greater number of hours of care per week it may not be.”
This is a paradox! Helping can be healing for you and caregiving can enhance your lifespan. We’re going to look at some of the evidence for that, while at the same time acknowledging there is distress. We have to learn how to manage that, but caregiving can have some very positive effects.
Burnout – The Cost of Caring
The three characteristic hallmarks of burnout are:
1. Reduced Personal Accomplishment. When you’ve gone from efficacy [confidence] to demoralization and are thinking:
“I’m not caregiving well enough.”
“I’m not achieving my personal goals day-to-day, either in caregiving or in life.
2. Diminished Caring (Depersonalization), from involvement to cynicism
“I’m not having any positive feelings.”
“Who’s going to help us?”
“Why doesn’t ‘the system’ work for me?”
Burned out caregivers have become very disconnected and have to find a way to get reconnected and, in some cases, re-find empathy and compassion. We’ve seen this in medical staff caring for COVID and suffering this level of burnout.
3. Emotional Exhaustion, from energy to fatigue
There are burnout self-assessment tests
Burned out caregivers tend to say things like, “I’m not working hard enough,” or “I should be able to figure this out.” In psychology this is called the fundamental attribution error, or the tendency to attribute failure to ourselves, rather than to the situation. Remember, it’s not you! It’s the circumstances you are coping with. You can come back from burnout by changing the circumstances so you can be present and available for the person you care for, and be healthy enough to do what you need to do
The Chinese have a word for this kind of situation. Wei-Ji is the transliteration of the Chinese word for “crisis.” It is composed of two words; Wei meaning “danger” and Ji meaning “opportunity”—hence the saying “Every crisis is an opportunity!” Or, in the case of caregiving, there is the possibility of becoming overwhelmed and burned out or of finding a great sense of satisfaction and growth.
The Roles of Self-Efficacy and Social Support from A Transactional Model of Stress and Strategies for Enhancing Resilience, by Dick Lazarus
Grief is always associated with caregiving, especially anticipatory grief, but with social/emotional support it need not be traumatic. Anticipatory grief is experiencing incremental losses prior to death, including the loss of pieces of your identity or ability to do things.
Revised Scale for Caregiver Self-Efficacy
1. Self-Efficacy for Obtaining Respite means having the confidence to ask for help or hiring caregivers to obtain respite for yourself:
- Can you ask a friend to stay with your care recipient so you can go out?
- To attend a doctor appointment
- For caregiving respite
- Can you ask a friend to do errands for you?
If your first thought is that you have nobody to ask favors of, you don’t have enough social support and need to find a solution to that.
2. Self-Efficacy for Responding to Disruptions means having the confidence to manage difficult behaviors
- Can you respond to repeated questions without losing your patience?
- When you get angry, do you have a way to calm yourself before responding?
Confidence in coping with home/car repairs, taxes, etc.
3. Self-Efficacy for Controlling Upsetting Thoughts / Grief means having the confidence to control your own unpleasant thoughts about caregiving and how you cope with grief
- Thinking about how unfair it is that you have to care for this person
- Thinking about how much you’ve lost due to your loved one’s illness
- It’s normal to contemplate and assess how you’re doing and how your loved one is doing, given what life has thrown you, but…
- Ruminating or perseverating on negative thoughts creates depression,
- Modulating thinking away from catastrophizing is self-care
Self-report your confidence level for handling each of these issue on a scale between:
- 0% “I Cannot Do At All” and “Complete Confidence” of 100%
Self-reporting your confidence level helps you identify areas you need to focus on and improve upon to lessen caregiving stress. Even a slight improvement in one or more areas can improve the level of caregiver burden you feel. Seek guidance from support groups, Family Caregiver Alliance, your general practitioner, clergy, etc.
The alternative is emotional dysregulation, where you are frustrated, angry, resentful, and grieving, which is bad for your physical, emotional, and spiritual health – and not a good quality of life.
Sometimes, you must be The Little Engine That Could. You reach inside yourself and find the energy to go on. Caregivers must also reach outside themselves to learn coping skills and find social support so they can continue caregiving. Nobody can provide 100% of another person’s care indefinitely without damaging their own well-being.
Strengthening Social Support – Any Way You Can
As mentioned in the above research, social support is the key to long-term caregiving for primary caregivers to come through caregiving with good mental and physical well-being:
- Respite, emotional support, appreciation, etc.
- Reach Out!
- phone
- text
- Zoom
- Skype
- Facetime
- sit on your porch getting to know your neighbors (from a safe distance)
- chatting (from a safe distance) while walking or hiking
- Get some help:
- support groups
- counseling
Self-Concealment – Don’t fall into this trap!
“The active concealment from others of personal information that one perceives as negative or distressing and if shared with others would bring shame and embarrassment.”
We all need a confidant with whom we can share our feelings and to act as a sounding board for negative or extreme self-criticism. Failure to express emotions results in:
- Depression
- Anxiety
- Physical symptoms
- Lowered social support
Themes of Helper Secrets – Interchangeable with Caregiver Secrets
Negative feelings and thoughts helpers / caregivers have but feel they shouldn’t.
- Feelings of inadequacy
- One-way giving (feeling the care recipient is unable to reciprocate in any way)
- This is sometimes exaggerated
- Part of anticipatory grief
- Too many demands
- Anger
- Emotional distancing from our care recipient, but feeling guilty for this behavior
Suppression (cognitive preoccupation) and the White Bear Effect
Subjects of an experiment were told not to think about a white bear. Of course, then they could not stop thinking about a white bear. You can suppress thoughts (about the white bear) for a short time, but not forever.
Dan Wagner (deceased), Harvard, called this the ironic rebound effect.
Continuing to suppress negative thoughts and feelings is unproductive. We don’t do anything with it but stress ourselves out. We don’t learn anything from it or find any meaning in it.
Emotional regulation theorist and researcher at Stanford, James Gross, found that reappraising thoughts and feelings is much more beneficial than suppressing feelings.
“We must accept our experience and be open to our inner experience so it can guide us.” – Carl Rogers (1902-1987) Psychologist
“As soon as we trust ourselves, we’ll know how to live.” – Goethe
Practice Balanced Empathy – another principle for enhancing resilience
Resilience is not a trait, it’s an outcome. You are resilient if you have a positive outcome.
There is no measure of resilience. Don’t think about being resilient, or not. You can build resilience.
One way to build resilience is to have balanced empathy.
Continuum of Emotional Involvement – with our loved ones, with ourselves
Personal Distress ———- Balance ———- Personal Distress
Empathy, plus a sense of loss, leads to a desire to help. That can get derailed in a number of ways, including extreme stress/burnout.
Dr. Larson showed a graphic of an animated human figure falling into a pit where another human figure is already standing.
If the person you’re caring for is in distress, find a way to help them out of the pit without falling into the pit yourself.
What do you hold onto to keep from falling into the pit while caregiving? It will take every tool in your toolbox!
- join a support group
- build your communication skills
- prioritize your physical and psychological health
- boost your self-efficacy (confidence)
- plug into social support
All these tools allow you to reach into the pit and help the person out.
Be Mindful
“Mindfulness means paying attention in a particular way; on purpose, in the present moment, and non-judgmentally.” – Jon Kabat Zinn
Be mindful by being present and learn from your emotions.
Emotions have needs attached to them and every need has an action. They can guide us in our caregiving and our lives. Notice those needs and satisfy them
Stress and Your Telomeres
Telomeres are the tips on the ends of chromosomes. Rather like the aglets on the ends of your shoelaces. Wearing of telomeres is directly related to signs of aging.
Childhood trauma, stressful caregiving, and other difficult life experiences can shorten telomeres.
Elizabeth Blackburn, UCSF (Nobel laureate for research on telomeres) found that meditation intervention prevents damage to telomeres.
Be Kind to Yourself! Self-Compassion
- Self-Kindness – “I’m kind to myself when I’m experiencing suffering.”
- Self-Judgement – “When I see aspects of myself that I don’t like; I get down on myself.”
- Common Humanity – “I try to see my failings as part of the human condition.”
- Isolation – “When I fail at something that’s important to me, I tend to feel alone in my future.”
- You want to not feel alone as it is detrimental to one’s health
- Reach out to support groups, family, friends, clergy, hobby/online groups, etc.
- Mindfulness – “When I’m feeling down, I try to approach my feelings with curiosity and openness.”
- Be friendly to your inner self, accepting of your experience, and forgiving of yourself.
- Emotions arise from a certain appraisal of things. Negative appraisal of oneself is detrimental to our mental and emotional health.
- Over-Identification – “When I fail at something important to me, I become consumed by feelings of inadequacy.”
- This negative thinking is damaging to self-efficacy / confidence.
(This material is from Kristin Neff, PhD, (2003) a pioneer in the field of self-compassion and author.)
Love yourself!
Give yourself credit for doing something (caregiving) that is tremendously difficult and amazingly wonderful.
An Altruistic Brain
We are wired to be caregivers. Mirror neurons respond both when perceiving an action and while executing an action. They provide a direct internal experience of another person’s actions or emotions and may be the neurological basis of empathy.
The Wellsprings of Altruism
Social Darwinism does not hold up because researchers have found multiple examples of altruism (helping one another) among animals in the wild and in captivity.
- Elephants
- Book, “When Elephants Weep”
- YouTube videos (search “altruism +elephants”)
- Rats
- Scientific American article, May 2021
- Monkeys
- Online articles, NIH, National Geographic
- YouTube videos (search “altruism +monkeys”)
People who commit mass shootings often have a history that explains how they became so disconnected from humanity to be able to do such a thing. However horrific mass shootings are, people step forward to help others through the experience, just as they do when natural disasters occur.
Study Results show strong evidence for reduced mortality and extended longevity for caregivers compared with non-caregiving controls.
“To be connected through caring relationships with other human beings, especially within one’s own family, is a common human experience desired by virtually everyone. Providing care for an older family member or friend with a chronic illness or disability is an increasingly common and important type of caring relationship. We assert the “caregiving-is-stressful” assumption is an overly narrow, simplified, and limited view on these types of human relationships. Multiple perspectives, from research on altruism, volunteerism, and evolutionary perspectives on prosocial behavior, are currently emerging to provide a broader and more balanced view on the range of caregiving experiences and health outcomes.” (Roth, Fredman, & Haley, 2015)
(That quotation is a comment on this research article, published in “Psychology and Aging,” 2018:
https://psycnet.apa.org/record/2018-19566-001)
We find that mortality rates are reduced. Family caregiving appears to be similar to other prosocial helping behaviors in that it provides stress-buffering adaptations that ameliorate the impact of stress on major health outcomes such as mortality!
Do Good, Feel Good, and Be Well – based on research
Possessing a high sense of purpose in life is associated with a reduced risk for all-cause mortality and cardiovascular events.
A strong correlation exists between the well-being, happiness, health, and longevity of people who are emotionally and behaviorally compassionate, so long as they are not overwhelmed by helping tasks.
You might say, as a caregiver, you are overwhelmed by helping tasks, so this doesn’t apply.
However, it would apply if you were able to get balanced (see Practice Balanced Empathy, above)
“Only a life lived for others is a life worthwhile.” – Einstein
Harvard student study participants had enhanced immune function after watching a film of Mother Teresa caring for the poor. This shows just watching caregiving improved immune function at the cellular level.
“There is joy in transcending self to serve others.” – Mother Teresa
Eudaimonia is a Greek word for a deeper sense of purpose and meaning in life.
“This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of Nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy. Life is no brief candle to me. It is a sort of splendid torch, which I’ve got held up for the moment, and I want to make it burn as brightly as possible before handing it on to future generations.” – George Bernard Shaw
“I don’t know what your destiny will be, but one thing I know: the only ones among you who will be truly happy are those who will have sought and found how to serve.” – Albert Schweitzer
If you lose your reverence for any part of life you will have lost it for all of life.
Young people, neighbors, fellow church members, etc. seeing your care for a family member teaches your values, how to demonstrate empathy, and perpetuates a culture of care.
So, think about what you’re doing in the moment, the value of it, the value to your loved one, the value to yourself in terms of your own health.
Questions & Answers
Q. How can I overcome my feelings of failure as a caregiver?
A. First, realize the context. We often forget the situation we are in and that, even though things are not going well, we are doing the best we can. For example, nurses dealing with covid felt like failures, especially early on when the medical community was learning how to treat it. Physicians feel like failures every time they are helpless to prevent a patient from dying.
A little bit of help is a lot of help. Understand that you can only do what you can do. We can’t prevent all suffering, but we can make a difference in the life of the person we are caring for.
Ask yourself constantly, “Is this a helpful thought?” If your thoughts about not being a good caregiver or feeling like a failure just make you feel worse, try to think differently by telling yourself the ways in which you are making a difference in the life of the person you are caring for.
Stop trying to be a perfectionist. That causes problems and other people see the effort you make and the good you do.
Avoid self-blame.
Talk about your feelings with others. Support groups are great for that! Others will be able to relate and to offer a realistic perspective.
Dr. Larson shared a personal experience he had with a friend who has Parkinson’s. They talk on the phone from time-to-time and his friend wasn’t following the conversation, Dr. Larson worried his friend’s cognition was going and grieved the loss of the friendship. Soon, his friend reported that he had gotten hearing aids and they were again able to converse normally over the phone. – The moral of the story is, sometimes the problem is not you and sometimes the problem has a solution.
Q. As a caregiver, how do you know when you are at the edge of the pit and about to fall in? This question refers to an animated graphic Dr. Larson shared in this talk.
A. You don’t want to end up in the pit. When you’re in the pit you’re distressed, out of balance, and letting emotional reactions take over.
Think of it as the difference between sobbing and having a tear in your eye. Sadness is not bad. If something sad happens and you have a tear in your eye, you still have control and perspective. If while caregiving you find yourself sobbing, you have lost all perspective. You are in the pit.
Sobbing is okay at the right time and place, like when you allow yourself to express your deepest feelings to a friend.
You are on the edge of the pit if you begin to feel like a failure, exhausted, overwhelmed, etc. When you identify those feelings, it is time to step back and find ways to take care of yourself, so you don’t fall into the pit.
You have to give yourself permission to take care of yourself. If you don’t take care of yourself, you aren’t in the position to care for your loved one. You can only be present if you’re not in distress.
Q. At what point does anger at the care recipient become so troubling that the care provider needs to seek professional help?
A. It is natural to have these feelings, especially when your freedom is constrained, the person you care for has personality changes, and caregiving demands are so great. It can be extremely frustrating and lead to anger.
Ask yourself what you are going to do about it because, generally, the person you are caring for is not capable of participating in a discussion about the circumstances leading to your anger. You’re going to have to express your feelings and work it through with someone else.
Writing about the situation and your feelings can be very helpful. Putting your thoughts into complete sentences, as if explaining it to someone who does not know the details of your caregiving situation, can help you process why you have these feelings and what to do about them.
When it’s happening, listen to that anger. What are you feeling in the moment? What is the anger telling you? Are you frustrated that your freedom is constrained? Do you need more help to do everything your loved one needs?
You may think you’re angry at the person you provide care for, but are you really? You might be angry at God, or the social system that leaves you without enough support,
Q. What if you are caring for someone with whom you have conflict? Can you be a good caregiver in the absence of love?
A. People often experience complicated mourning when someone dies with whom they had a complex relationship. This is because you have mixed feelings about their passing, often unresolved issues, so you may feel both grief and relief.
There are complex caregiving relationships. When your relationship is contentious or has changed due to a long-term illness, your emotional connection is lost. How do you activate compassion when part of you does not include the other person as part of your relationship? Be good to yourself, get support, talk about it, and know nothing is wrong with you.
It is hard. It may be a limiting factor because it is more of a spiritual challenge.
Dr. Larson had a patient who had been stabbed 17 times. The man felt he had survived because there was a policeman nearby when he was attacked. In the first three weeks of therapy with Dr. Larson the man’s brother was killed instantly in a head-on collision. Being a spiritual person, the man felt God had prevented his brother from suffering. Later, half the man’s home was destroyed in a flood. The man’s perspective was that God had preserved half of the house. – The moral of the story is, Dr. Larson disagreed with the man’s overly positive perspective, but had to find a way to relate to the man in order to help him.
We all have complex relationships. Caregiving is a high stress situation in which the cracks in our relationships are exposed. We must find ways in which to cope, and that includes all the self-care tips in this talk: be good to yourself, talk about your feelings, and understand nothing is wrong with you.
Q. On the topic of self-concealment, caregiver-only support groups are invaluable because you can express those difficult feelings with others who understand and do not speak of it outside the group.
A. Yes, it is a source of instant empathy for a perfectly normal experience! Especially in this time of increased social isolation and stress during covid, even professional caregivers need a place to express their feelings of frustration and anger toward their care recipients.
Q. In “The Helper’s Journey,” Dr. Larson talks a lot about guilt. Please talk a bit about the guilt of placing family members in a care facility, particularly one’s spouse.
A. It may be easier to place a parent than to place a spouse. With a spouse you’re losing your present and your future. With a parent you’re losing your past. Either way, it is a difficult decision. I’ve had clients who processed for years whether they did the right thing in placing a spouse. There is no perfect solution when your limits are stretched, and you’ve done the best you can.
When Dr. Larson’s mother moved into assisted living she loved the place because she had people to cook and clean for her as well as friends and neighbors to socialize with. In an ideal world all care facilities would be wonderful places to live, but they aren’t. There’s a lot of agonizing over which place to choose, especially given financial constraints.
This is just the type of thing to discuss in a support group. You would hear different experiences and perspectives. You can discuss how to ameliorate your guilt.
Guilt is not a bad feeling. It’s a niggle that tells you, “You can do something to improve the situation.” Guilt is better than shame, where you’re beating yourself up saying, “I’m not good.” Guilt is saying, “I don’t know if I did the right thing, or if there’s a better way to approach this situation.”
Even if you’re a zillionaire you may still have emotional issues over the situation. You’re not going to fix the situation, but what can you do about it so you know you’ve done your best?
Remember, you’re going to be in the same situation at some point and someone is going to feel guilt over your placement. Accept that you’re going to suffer when you love someone and are trying to do your best. There is no way to love without sadness, doubt, and grief.
Q. A listener says her mother has a great life, even though she has Parkinson’s. Her mother keeps a leisurely schedule and does whatever she wants. The daughter feels like she waits on her mother hand and foot. As a caregiver, the daughter feels trapped.
A. This daughter has done such a great job to make her mother so comfortable. Now, she needs to figure out how to take care of herself and ways in which she can find fulfillment in her life and still look after her mother.
Whenever our freedom is limited, we feel frustrated and angry. So, you need to loosen your constraints.
She needs respite. A support group may be able to help you brainstorm ideas. Befriending someone in the support group to walk together, see a movie, etc. could go a long way toward alleviating your anger.
Q. Is it my responsibility to keep my husband going and to ensure he thinks highly of himself.
A. The caregiver journey is not the career you signed up for. In that sense, is it a responsibility or just a life circumstance?
In the listener’s question, Dr. Larson hears the inner struggle of this wife feeling a tremendous caregiving burden. She may truly have limited resources.
Certainly, Dr. Larson can relate to family members trying to help their loved ones cope and not feel terrible about the situation they find themselves in (like having Parkinson’s).
This is a difficult challenge. This listener should seek more resources for support and not feel you are the only person with the “response ability” for your husband.
Have self-compassion and set limits for what you are truly able to do. Setting limits can induce guilt, but limits can be very helpful for both of you. Your loved one may get frustrated with you if you refuse to do something for them when they want you to, but they will learn to accept your limits. When they do, you will be less burdened, and they may find ways to do some tasks for themself.
Q. There are two gripes that come up a lot in Parkinson’s caregiver support group meetings:
- Person with PD watches TV all day
- Person with PD has been told to exercise but won’t engage in exercise for various reasons (fatigue, apathy, etc.)
What can a caregiver do if their loved one is in one of those categories?
A. Don’t go nuclear and turn off the TV. That will only result in an argument.
You could try setting limits. Saying, “No, we’re not turning the TV on until after a walk.”
How can you diversify activities? Present hobbies and light exercise as a done deal. Especially if the person with PD suffers from apathy or fatigue, having you do the planning is helpful. Work up to more as you can.
Invite them to join you in a walk or other activity. Put a destination at the end of the walk, like ice cream.
You can also hire in aides or fitness trainers because they can’t argue with strangers as easily as they argue with you/family.
As a caregiver, you can’t take all the responsibility on your shoulders just because you are the only one present to help your loved one be motivated. If you feel guilt and inner struggle, you need support / a sounding board to resolve those feelings and protect your own health.
Some caregivers take all this on their shoulders as a response to coping with the impotence of not being able to influence or control Parkinson’s disease symptoms and progression.
Q. Sometimes, the person with Parkinson’s is in denial and the care partner more clearly sees the situation. Any thoughts about how to straddle those different perspectives?
A. Dr. Larson has seen this come up especially when the caregiver thinks the person with Parkinson’s should stop driving. Ideally, a mediator would be present to hear both perspectives and help them come to a meeting of the minds.
Sometimes, the person with Parkinson’s has a diminished level of cognition and can’t fully participate in a conversation.
The person with Parkinson’s may also be terrified because they are losing their life. They don’t want to accept that and they don’t want their partner to accept that. Sometimes, this is comforting, like when someone has cancer and their partner is saying, “You’re going to be fine. We’re going to get through this.” But that doesn’t work with Parkinson’s.
Q. One slide in this talk expressed that mortality of the caregiver is not being adversely affected by the stress of the daily experience. How best to find that balance and the stress level to make that a reality?
A. Having a sense of efficacy (self-confidence), getting social support, and (paradoxically) the number of hours caregiving mitigates (lessens) the effects on mortality. Caregivers experience personal growth because we benefit from helping others, even in the face of grief over the loss of our spouse or parent.
Work on some of the things to bring balance into your life to mediate your stress and protect your own health.