In December 2023, Brain Support Network and Stanford Parkinson’s Community Outreach co-hosted a discussion for caregivers to share the top three things they have learned about caregiving. Caregivers offered advice to each other, including advice caregivers wished they could tell their younger selves.
Participants in this discussion were members of local San Francisco Bay Area caregiver support groups coordinated by Brain Support Network and Stanford. Participants have experience caring for those with Parkinson’s disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration. Very little of the advice was disease-specific.
For Stanford, Jordan Dagan crafted a summary of the discussion, grouped by topic. The advice shared included how to maintain a healthy relationship with your loved one, how to find help as a caregiver, what you can expect from friends and family, planning for later stages, and more. Jordan’s interesting summary is below.
The recording of the discussion is on YouTube.
If you would rather see notes that are more closely based on the chronological order of the discussion, view the document that the discussion hosts developed.
Now, on to Jordan’s summary….
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“Three Things I’ve Learned as a Caregiver: Discussion”
Hosts: Stanford Parkinson’s Community Outreach and Brain Support Network
Moderator: Candy Welch with Brain Support Network
Date: December 3, 2023
Summary by: Jordan Dagan, Stanford Parkinson’s Community Outreach
BIG-PICTURE ADVICE
Work with your loved one, and try to function as a team as much as you both can, for as long as you can. Life with a progressive disease involves both the person with the disease and the caregiver. Consider keeping in mind the idea of “you two against the disease, rather than you two against each other.” Over time, the disease progression will interfere with your loved one’s ability to function and communicate. The more time you have establishing a good relationship with them early on, the better.
Slow down. Take a moment to slow down and practice patience. Stress will make your loved one’s symptoms more prominent. Doing your caregiving at the speed at which your loved one can do things is a huge gift! This helps them feel that they are important, and not a burden to you. Everything you’ll have to do will be done slower than you did it before.
Find something you love to do that “recharges your batteries,” and prioritize time to do it. This prioritization will probably take conscious planning; full-time caregiving can be a huge drain on your energy, especially since you’re on call 24/7.
Don’t forget to take care of your health! Be aware of your own body’s needs. It’s common for caregivers to develop or discover health issues after their loved one passes away. This may be because of chronic stress, an injury obtained by helping their loved one (such as lifting them off the floor after a fall), or because they’ve prioritized their loved one’s health over their own. These issues could be as severe as breast cancer, stroke, or debilitating back injury. Poor health during your time caregiving could put both you and your loved one at risk. Injuries and illness may affect your ability to work, continue your daily tasks, and cope with grief and the stresses of caregiving.
Be conscious of subtle stressors. Beyond the obvious stresses of caregiving, you are dealing with many underlying stressors, many of which are brought on by changes in your life. Your big-picture life plans have changed, and it’s common to grieve the life you imagined you’d lead alongside your loved one. You’ll have to make changes to your lifestyle, which are subtle at first but will grow larger as your loved one’s disease progresses. Your relationship with your loved one is changing, and so will the long established balance of responsibilities between you.
Believe your eyes and take what you see to heart. Do your best to fight the urge to deny that your loved one is ill, and/or when their symptoms are progressing or developing. You will learn that everyone is ‘behind the curve’ when first seeing the symptoms of Parkinson’s. Every case is different, especially in how symptoms will affect everyday life and tasks.
Open conversations with your doctors about any changes, and speak up for your loved one and yourself. You see your loved one every day, and you have the best information about what medications and treatments are or are not working. Don’t be afraid of hurting the feelings of doctors. You have a right to get the care you need.
Try your hardest to get your loved one to do physical exercise. Be creative if the usual doesn’t work. Consider getting them a personal trainer at the gym, signing them up for boxing, getting them a special bike, or whatever works! Exercise can slow down the progression of Parkinson’s, and may keep your loved one mobile for much longer!
When asking for help, be as specific as you can. Consider ways for people to help, so you can be prepared to tell them what service they can provide, the time, and the place. When you struggle with something, take note of the task. This could be coming over to give your loved one company while you run an errand, helping you with the dishes, completing a task you’re unfamiliar with, or anything else they’re willing to do.
Use any and all ways to stay connected to the outside world, especially those who you love. One care partner advises against moving to a rural area, where good-quality healthcare is far away and there are few caregivers to be hired. Isolation is a terrible thing for both the patient and the caregiver.
Medications may be less able to manage your loved one’s symptoms as the disease progresses. This depends on your loved one’s individual disease, how it’s progressing, and what other health conditions they are dealing with. Treat your loved one’s obvious motor and non-motor symptoms, such as anxiety, sleeplessness, and pain.
ADVICE ABOUT THE EMOTIONS OF CAREGIVING
Do not compare yourself to other caregivers. There will always be someone who seems to be, or actually is, “doing better” than you. Your situation and your relationship with your loved one are unique. You may have promised to care for your loved one, but everyone has limits. Make as much peace as you are able with the concept of “forever incurable.” There will be plateaus, but the disease progression is downward.
If your loved one is being mean, tell them.
Feel and express your feelings safely. This includes grief and sorrow, frustration and rage, dissatisfaction and disappointment, and more. Bottling up and repressing your feelings is a recipe for later breakdown and illness. However, your stress must be vented elsewhere, not next to your loved one. Take a breath, leave the room, take a break if you have to.
Your own pride, distress, and ideas about how things “should be” done may get in the way of caring for your loved one. Touching someone is not mandatory; look for invitations to touch. Keep in mind that if someone is distressed by what you’re doing, it may be better for their wellbeing to not do that. If you think your loved one can do something (especially with exercise and physical therapy), that’s not always the case. If it’s causing them and/or you more distress, just let it go.
Create as warm and peaceful an environment as possible, by modulating your own energy and behavior. Be as grounded and present as you can be. Just being quiet is acceptable. Let yourself go, and be present with the other person. Distress at seeing your loved one in pain may make you want to take action, but you may not know what to do, or may not be able to do anything. It’s not about you, it’s about them.
Consider practicing mindfulness meditation; there are lots of options for learning calming, grounding, and centering techniques, and many of them aren’t “campy” and don’t feel “fake.” Find the self-care or meditation practice that works for you. If you feel like you’re rushing, take an opportunity to breathe. Even taking a moment to focus on what’s around you while waiting for the elevator can help.
You will make mistakes and will second-guess yourself. You will likely feel guilt after your loved one dies, and wish you had done things differently. Try to understand that hindsight is always 20/20, and give yourself grace. Give yourself credit for doing the things that you did do, because nobody else did them.
ADVICE ABOUT FRIENDS AND FAMILY
Every patient/caregiver dynamic is different, and each person in the relationship will go through their own unique challenges as their previous relationship changes. The gender, age, and previous relationships of the person with a progressive disease and their caregiver all affect this dynamic. Men tend to be more hardheaded, and tend to overestimate their own abilities, which can cause unique stress for their caregivers. The age of onset affects what symptoms your loved one experiences, how they manifest, and how they affect their life and yours. Each combination has its own issues and concerns.
Changing family dynamics are especially stressful for parent/child and spousal caregiving relationships. It is extra important to consider therapy, when navigating changing relationships.
If your loved one is your parent, you may have seen your parents care for your grandparents with the same or similar conditions, and you may have known caregiving would probably be part of your life journey. If your loved one is your spouse, you may have assumed they would be part of your support network as you each get older, and may be grappling with the loss of them as part of your support system. If you’re the sibling, friend, or neighbor to someone with a chronic illness, you may feel as though you’re on the outside looking in at their life and how their disease is progressing.
If you have young children, talk to them sooner rather than later about the loved one’s disease. Medical equipment appearing in the home as part of your loved one’s care may be a source of upset, especially for young kids. Get professional help to do it if you need to.
Offer recordings of advice and stories you have to tell. Make these recordings ahead of when you think you’ll need them, especially if your loved one has dementia, or struggles to communicate. Do it when you’re in the right headspace. Those you love might not have any enthusiasm to ask you questions, or they might not have the emotional ability to cope with asking you questions. Younger family members, especially children, may want to learn about their aunt or grandpa when they get older. Asking questions can be more important than you think; your loved ones may have questions about family who are living or deceased, about career or relationship advice, and more.
Your loved one may be in denial, and may hide symptoms and/or incidents from you and others as they occur. This can make recognizing new or worsening symptoms difficult. Denial may increase the difficulty of getting your loved one to follow a care plan or routine, and brings its own emotional challenges.
Attend caregiver-only support group meetings, and establish relationships with caregivers outside of the meetings. This will help you find friends who better understand what’s happening in the caregiving part of your life. You may find that caregiver friend with whom you can be completely honest. Sharing your experience with others will help you process your emotions, find new strategies, think outside the box, and help you feel less isolated.
Educating your friends and family about your loved one’s disease can reduce the social stigma attached to the diagnosis, and can help you get the support you need. However, remember to preserve your own energy and emotional well-being. Unusual acts and faux pas by your loved one will happen, and these may be hard to understand and difficult to explain to others. When friends ask yet again about your loved one’s symptoms or diagnosis, you can tell them to look for information about the disease on their own. You’re under no obligation to answer their questions, especially if you’re not comfortable answering. When friends ask how your loved one is doing, you can just say “the same.” You’re allowed to deflect questions, especially those that you’ve answered multiple times.
Be the one in charge. There will be impossibly difficult decisions to make as a caregiver, and there will always be someone who doesn’t agree. If you need help, do your very best to get it, even if you must advocate to uninvolved family members and uninformed health care staff. There’s strength and power in anger. Stay tough. You can do this.
Expect that some of those closest to you will never understand or simply not show up. Find new friends! Invite your good friends over to your house for dinner, a movie, or any other social activity. It will be stimulating for your loved one, and it will keep you from becoming isolated. If they are good friends, they will hang out.
PLANNING FOR FUTURE CARE AND MEDICAL EQUIPMENT
Though everyone’s disease progression is different, there are some common themes you can plan for in advance, so do plan ahead.
Familiarize yourself with common symptoms and general timelines of PD progression, so you have an idea of what to look out for, and aren’t caught unawares when your loved one’s symptoms change or new symptoms develop.
Consider adult day care for your loved one, or a class they can participate in. This will give you valuable rest, and time to yourself! It also helps your loved one have other company, and reduces how isolated you both are. Adult day care can be a wonderful opportunity for both the client with PD and their family. The organizers usually operate with a person-centered approach, and may offer interviews to better personalize activities to your loved one’s interests.
Do your research on equipment that can help your loved one, before they need it. Consider how your loved one will be transported as their mobility decreases, including questions such as what level of the home your loved one spends the most time in, if you’re in an apartment complex, etc. Certain equipment won’t be useful for you; not all sitting-to-standing devices lift someone fully to a standing position, and some can’t fit through doorways or into narrow spaces such as the bathroom.
There may be resources you didn’t even know about! Adult day centers often have repositories of durable medical equipment that people have donated, such as walkers, wheelchairs, and canes. You may be able to get durable medical equipment for free, rent, or low-cost.
Insurance may pay for medical equipment, but the process will probably be very slow. By the time you realize you need a walker, special wheelchair, or chair lift, it could be weeks or months before you get it, and your loved one’s symptoms may have progressed past the point where you need that equipment. This could mean that your insurance won’t pay for the equipment they do need now.
Get palliative care or hospice care much sooner than you think you need it. Palliative care focuses on improving quality of life for the person with PD overall, and is applicable across the time course of the disease, not only near the end of life. Most people resist it and wait too long to get help. Palliative and hospice care services may offer access to social workers, nurses, and lots of other help. Palliative care might be paid for by grants which request projects from you, such as a “legacy video” message about your experience. These projects could offer you an opportunity to contribute to the community.
Covid has impacted the caregiving help industry! Some resources might not be active anymore.
If your loved one is resistant to the idea of help, frame the idea how you need to, to get the help you need. You could tell your loved one that the in-home helper is a friend helping you with chores, or a nurse whose service has been prescribed by their doctor.
Don’t assume that all live-in elder care facilities (also known as congregate care facilities) are bad, or that your loved one will be less happy at a care home. Your loved one may feel more secure in a care home than outside of it! You might be able to find staff for everything they need under one roof—physical therapy, haircuts, podiatrist, and more—along with professional caregivers. Having your loved one in a care home can help you return to a better relationship equilibrium with your loved one.
Scout out memory care facilities, daycare centers, respite care, and in-home care long before you think you need it. Learn how these resources work, and how they’re paid for, so you don’t have to learn on the fly when you need help later. It is better to move your loved one to a care home while they retain better functioning, so the adjustment is easier. Note that some care homes won’t take palsy patients.
PLANNING FOR FUTURE FINANCE AND MEDICAL DECISIONS
Create a budget. Having a loved one with one of these diseases can add $50k – $100k per year or more, even with insurance. How will those funds be handled? The person will probably live for years, and expenses will add up over time and as their care needs change and increase.
Your healthcare power-of-attorney (HCPOA) document should not list your loved one with a neurological disorder as your health care proxy, especially in the case that they have dementia. Someone with dementia isn’t equipped to advocate for their spouse. They can be involved in decision making, and their feelings should be taken into account, but should not have final say. Even without dementia, physical disability may mean they can’t get to the hospital to act as an advocate.
If you are an adult child of the person with a progressive disease, and you are the HCPOA, and you have financial power of attorney (POA), access to a parent’s bank account, know that this financial POA relationship ends on the death of the parent such that the adult child can no longer gain account access. Losing access to accounts can cause a big problem with paying bills, additional medical/therapy costs, problems with debt, problems with paying for last wishes and funeral arrangements, and more. The best work-around is that the parent has a trust, the bank account be a trust account, and that the adult child is a named trustee.
If you have a credit card on the same account as your spouse, be sure you have a credit card where you (the caregiver) are the primary cardholder. Many women have joint credit card accounts with husbands, where the husband is the primary cardholder and the wife is an authorized user. Once the credit card issuer learns that the primary cardholder has died, the card will be canceled. The authorized user can apply for a new credit card, but this usually offers a much lower credit limit.
Make plans for brain donation far in advance if you can. Contact Brain Support Network (brainsupportnetwork.org/soon) as soon as you decide that’s something you want.
Create a plan or set of directions in case something happens to you. Most people assume that the person with a progressive illness will pass before the caregiver, but this isn’t always the case. Your next of kin or trustee needs clear instructions on what to do in case you are incapacitated or die, including what to do right away. The less info they have on what to do, the more difficult it’ll be for them.
PLANNING FOR FALLS
Neurogenic orthostatic hypotension (nOH) involves a sudden drop in blood pressure, and can affect mobility and put your loved one at much greater risk for falls! nOH can happen with change in position, or with a large meal. This may have a huge impact on your loved one’s safety, including when you go out to eat. Don’t panic! Get the nOH treated or managed, because if it happens when they’re standing up, they might fall, and might be seriously injured.
You can be hurt even if you fall onto a soft surface. Aftermath treatment of a fall can be deadly.
Work with a physical therapist and your family member to learn how to fall more safely, how to get up after a fall, and/or how to help your loved one up without hurting them or yourself.
PLANNING TRAVEL
Be VERY careful when taking your loved one traveling. It’s very disorienting and challenging for both you and your loved one. Stop traveling before it’s too late! You don’t want to get stuck somewhere with no support, and/or a language barrier.
If you’re planning a long drive, especially if you’re concerned about snow and ice, consider how to handle bathroom breaks, especially public or gas station bathrooms. Announce that you’re helping your partner when you come into the bathroom, if your loved one is of the opposite sex than you.
You may not be able to rely on rest areas. If you need a break from driving, consider stopping at Costco for cheap gas, and visiting the restroom and cafe. Lowe’s is also good for this, since the bathrooms are located in the front of the store.
FURTHER SUGGESTIONS
What hospitals think a handicapped bathroom is, and what we think a handicapped bathroom is, is very different! Try using a walker in the handicapped bathroom. Most of the grab bars are too far away on the wall. Commode chairs would be much more useful than grab bars, especially in the memory care units.
Check for clinical trials. The better shape the patient is in (usually earlier after symptoms start), the better the chance for acceptance and success in the trial.
If a loved one is still mobile overall, but the weather is poor, take them shopping! Go to Walmart and use a shopping cart as a walker.
Crowded and noisy places can be overwhelming to someone with fatigue, cognitive impairment, chronic pain, or other symptoms. Heat and cold, light and noise, or strong smells may all be overwhelming. Treadmill exercise at home can offer a controlled environment.
As the disease progresses, it becomes more work to get your loved one out and about. Search out venues that are accommodating so there is less stress. For example, Bing Concert Hall at Stanford has gender neutral bathrooms and good handicapped seating. Most museums have wheelchairs for loan if your cared one gets too tired with a walker, as well as gender neutral bathrooms.