A local Parkinson’s Disease (PD) caregiver support group member recently offered her highest recommendation for a book titled “Advice From a Parkinson’s Wife: 20 Lessons Learned the Hard Way,” by Barbara Sheklin Davis (2019). We encourage you to buy it! Barbara authored five books before this one. She was a Parkinson’s care partner for over twenty years. Her latest book is “Advice from a Parkinson’s Widow.”
Despite the title, “Advice from a Parkinson’s Wife,” this book will be of interest to all caregivers — whether spouses or not, and whether caring for someone with Parkinson’s Disease (PD) or one of the atypical parkinsonism disorders (Lewy body dementia, progressive supranuclear palsy, corticobasal degeneration, and multiple system atrophy). Some of the “lessons learned” are most applicable to caregivers coping with a family member with cognitive issues, even dementia. And a few of the lessons are spouse-specific.
One of the 20 lessons that Barbara learned was that anosognosia is a possible symptom. This is an aspect of many neurological conditions. A good summary of anosognosia and how it affects caregivers can be found in this blog post from 2018 on “The Caregiver Space.”
Another lesson that Barbara shares is that one book “saved” her — “Making the Connection Between Brain and Behavior: Coping with Parkinson’s Disease,” by Joseph H. Friedman, MD (2007, 2nd edition 2013). This is indeed a fantastic book, and an easy-read.
Brain Support Network’s incomparable Denise Dagan read this book and provided detailed notes of the 20 lessons. Denise’s father had Lewy body dementia and her father-in-law had Parkinson’s. She runs two PD caregiver-only support groups for Stanford. Denise added a few tips of her own.
In reviewing Barbara’s book about the 20 lessons, Denise says:
Barbara felt that the world expected her to know what to do as a Parkinson’s wife, to bear the burdens without complaint, and to be strong and loving. She didn’t feel particularly suited to the role of care partner and was not trained for it at all. Even with all the information available about Parkinson’s Disease, what can be done, ways to manage, reasons to be optimistic, and caregiving for PD, Barbara found that many serious issues remained un-discussed, so she wrote about them.
Barbara’s husband developed significant cognitive impairment as his PD progressed. Barbara always felt less alone and better prepared to cope with these behaviors when she understood that they were actually part of the disease. She felt let down by her husband’s medical team because they did not prepare her for the possibility that her husband would have hallucinations, delusions, and angry outbursts. In writing this book Barbara offers readers the comfort of shared experience and the knowledge that they are neither alone nor “making this up,” particularly with regard to the mental issues that Parkinson’s causes.
Particularly in the epilogue, Barbara describes the unrealistic demands and expectations care partners place on themselves, the roller coaster of hope, disappointment, and unpredictability, and the care partner’s irrational expectation of gratitude that turns to anger when it is not forthcoming. Even so, she writes, “There are still lots of reasons for me – and my husband – to be happy to get up every morning, even if I’m exhausted by the time night falls.”
Barbara came up with 20 lessons in just 94 pages of stories and detail. My notes are brief summaries and bullet points. It’s a quick read with great insight and I highly recommend it.
– Denise Dagan
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“Advice From a Parkinson’s Wife: 20 Lessons Learned the Hard Way”
by Barbara Sheklin Davis (2019)
Detailed Notes by Denise Dagan
Brain Support Network staff member
(and leader of two Stanford-run PD caregiver support groups)
Lesson 1: Anosognosia “lack of insight” – the anatomical damage caused by Parkinson’s to the part of the brain involved in self-reflection.
Parkinson’s care partners often report that their loved one with PD won’t use their walker, thinks they can still drive, or deny that they have fallen. Until a care partner learns the word anosognosia, they can only believe that their loved one is either in denial about having PD or has dementia with memory loss.
Because of anosognosia a person with PD may not see that there is anything wrong with what they do, and they can’t understand why everyone is so worried about them. This complicates the care partner’s job, as the care partner is perceived as offering assistance where none is needed.
For every lesson Barbara includes detailed tips for how to cope with the issue being discussed. I will summarize.
* Don’t disagree, correct, or argue. This will only upset them and frustrate you.
* Find ways to make changes discretely, arranging things subtly that will help ensure their safety.
* Allow them to do as much independently as possible, while remaining alert and available to help.
Lesson 2: The Book That Saved Me
“Making the Connection Between Brain and Behavior: Coping with Parkinson’s Disease,” by Joseph H. Friedman, MD (2007, 2nd edition 2013) helped Barbara, her husband, and their children understand the myriad of symptoms that manifested in her husband’s behavior that were due to PD.
How to Cope:
* Buy and read Dr. Freedman’s book. Get extra copies for members of your family. [Barbara will not benefit financially.]
* Find books and articles in a writing style you can relate to, to learn about PD and PD caregiving. Refer to them often.
* Use the internet to search for information and solutions to problems as they arise. English-language searches will provide resources from the UK, Canada, and Australia. In some ways other countries are ahead of the US in caring for people with PD.
Lesson 3: Clinging
The very real inability to function independently can cause people with PD to fear being left alone, which leads to clinging and following the care partner. This may provoke emotional distress and anxiety in the care partner.
A post on the website AgingCare.com let Barbara know she is not unique in her distress over her husband’s constant need for her attention and interaction. She thought she was just ill-suited for caregiving.
How to Cope:
* Deflect attention by finding something for them to do. It doesn’t have to be something that needs doing well or even doing at all.
* Allow others to spend time with them. Invite one of their friends over for an hour, hire a caregiver for several hours per week, enroll them at an adult day care center, etc. Some of these options have the advantage of giving a care partner a few hours of respite, or as Barbara saw it, freedom.
Lesson 4: Doctor Visits
It is likely that a loved one with PD will perk up for a visit with their doctor, appearing more alert, stronger, and more in command than they ever are at home. This can make a care partner feel ridiculous for raising issues and asking questions, especially about things that appear to be a non-issue.
A person with anosognosia is likely to answer every question the doctor asks by indicating that everything is fine. This puts a care partner in the difficult position of contradicting the person with PD, but if they don’t the doctor will not understand current challenges.
How to cope:
* Don’t be afraid to change doctors until you find a physician that listens to both the person with PD AND the care partner.
* Speak up! Nonverbal communication is easily missed, ignored, or misinterpreted by medical staff.
[Denise’s suggestion – use online communication to inform doctors of challenging issues prior to an appointment, so you are not in the position of contradicting your loved one.]
Lesson 5: Falls
Falls are inevitable for someone with PD. If they have anosognosia, they are not likely to remember that they fall and will continue to do things that lead to falls. Consequently, the care partner is constantly worried about injury due to falls, making numerous adjustments to the home to prevent injury due to falls, and probably not leaving the house unless someone else stays with their loved one. This leads to increased isolation, which is not good for the care partner’s mental or physical health.
How to cope:
* When a fall occurs, remain calm. Allow the person to recover their breath and dignity. If they are hurt, call for assistance.
* Do not attempt to lift someone who has fallen by yourself. If they are not near a bed or sofa, bring a sturdy chair over to them. Sit on the chair if you have to, to keep it stable. Have them get onto their knees and slowly rise to a standing position. Have a walker or wheelchair ready once they are up.
Lesson 6: Guilt
Care partners may feel guilty for a lot of reasons. Barbara’s guilt was mostly over wanting and taking time to herself. She also felt guilt about her resentment that her efforts to care for her husband were not recognized and appreciated.
This helpful quote online changed everything for Barbara:
“Unwarranted or inappropriate guilt truly serves no one. It will also suck the life and energy out of you. Refusing to be ruled by caretaker guilt is part of taking care of you!” The site went on to say, “The caregiving journey is destined to be one of angst and suffering if you let guilt move in and stay…”
After reading this, Barbara realized she had more control over the situation than she had believed.
How to cope:
* Own up to your resentment. Feel the guilt but recognize that your feelings don’t have to control your actions.
* Get help – with your home and caring for your loved one. Join a support group or commiserate with a friend in a similar situation. Tthese things will give you the time to process your emotions and re-energize.
* You should not feel guilty about taking care of yourself. It makes you a better, more available care partner.
Lesson 7: How Your Marriage Changes
Parkinson’s changes the marital relationship from partners to that of caregiver and dependent. Barbara described her feelings of loss as conversation between her and her husband became virtually nonexistent. She became responsible for everything and couldn’t even share her troubles or ask his advice. She advises readers to do the things you dream of doing together before Parkinson’s prevents you from being able to.
How to cope:
* Ensure you, the care partner, know everything about your finances, what insurance you have, and how to handle the taxes.
* Give yourself permission to mourn the loss of your partnership.
* Live in the moment and relive fond memories together when you can no longer do the things you loved to do together.
Lesson 8: The Kindness of Strangers
Care partners are always advised to ask for help, but that is easier said than done and there is no guarantee the requested assistance will be forthcoming. Regardless of whether a person is family, friend, or a complete stranger, there are those who notice and step in when help is needed and those who resist, even when a direct request for assistance is made.
How to cope:
* Don’t be afraid to disclose the disease. State calmly, but firmly, “My husband (or other loved one) has Parkinson’s.”
* A willing helper is much better than an unwilling helper. This is why hiring help is often much easier. Keep trying options until you find what works for you. It may take some time.
* It is fine to ask people to help with little things, like holding open a door or scooching their chair for a wheelchair to pass through. If they are disgruntled about it, that is on them. Always say thank you, especially to those who notice assistance is needed and volunteer. They should know how very special they are.
Lesson 9: Let me Do It
But did you know that dopamine is the main neurotransmitter involved in perceiving the passage of time? While it may legitimately take a person with PD longer to do something, they think it’s taking them much less time than it is.
Trying to be in a hurry, combined with impulsivity, another Parkinson’s characteristic, is a double fall risk. The example Barbara gave is her husband jumping up to answer the door.
Despite the overall slowness of movement, people with PD may start out slow, but speed up as they walk, moving faster and faster in a gait known as festination. Paradoxically, if Barbara wasn’t telling her husband to hurry up, she was telling him to slow down!
How to cope:
* Allow extra time to do everything and get anywhere, to spare yourself the stress of hurrying.
* Make adaptations that allow things to proceed more smoothly, like slip on shoes or printing the menu at home so a decision can be made by the time you arrive at the restaurant [Genius!].
* Even thinking slows with PD. Keep choices to two options and yes/no questions.
* Stop expecting quick decisions or action. Adopt a Zen frame of mind.
[Denise’s tip: Doing things at the pace of the person you’re caring for, and not making them feel rushed or that they’re too slow, is the greatest gift you can give them. Mindfulness meditation, or focusing on the present moment, is a great way to do this.]
Lesson 10: Little Practical Things
1. Aluminum transport wheelchairs are MUCH lighter and easier to lift than steel ones. Practice putting your wheelchair into any new car you’re considering buying. Barbara was amazed at how much easier it was to get their wheelchair into a rental car than her car at home.
2. A cushion on the seat of a transport wheelchair is much more comfortable. Choose one with a washable cover.
[Denise’s note: There are even wheelchair cushions specially designed to prevent pressure sores.]
3. Unisex, overnight diapers save you from changing linens in the middle of the night and doing more laundry. Barbara settled on the Amazon brand. The Depends brand is more focused on looking like underwear than preventing leaks lying down.
4. When Barbara’s husband could no longer use a knife and fork, she asked restaurants to cut his steak into bite-sized pieces before serving it to him. Most were amenable to this request. [Denise’s note: Leave a nice tip.]
5. A shirt with magnetic buttons looks just like a regular button-down shirt and is SO much easier to manage.
How to cope:
* Connecting with other PD care partners is an excellent source of useful products and tips. If you employ a healthcare aide, watch how they do things. Their training allows them to move someone with PD efficiently and without hurting themselves. Most are willing to share tips, if you ask.
* A good gerontologist can help you understand what is normal aging versus the myriad manifestations of PD.
* Try to anticipate what you will need so you have it on hand when you need it, like bibs, dishes with sloped sides, bedrails, a gait belt, etc.
Lesson 11: Is There Somebody In There?
One of the least well-known aspects of PD is facial masking. This flat affect makes people misread the emotional state and level of interest of the person with PD. Strangers and family alike may assume a person with PD is depressed or even in distress.
How to cope:
* Once you understand that the muscles in the face are as affected by PD as the rest of the body, you will know that the only way to know their state of mind is to ask, “How are you feeling?”
* You may need to prompt your loved one to tell others how they are feeling. Their upbeat response may teach friends, family, even doctors to not judge a book by its cover.
* Speech therapy can improve facial expression. When taking family photos, you may still have to prompt a person with PD to smile and show their teeth!
Lesson 12: Nighttime
Sleep disturbances are common to people with PD and have significant effects on quality of life for both the person with PD and their care partner.
How to cope:
* There are many causes of sleep disturbances and there are treatments. It is worth discussing with your neurologist.
* Good sleep hygiene can improve sleep. That includes going to bed and getting up at the same time every day, taking evening medications on time, and limiting fluids within two hours of bedtime.
* Earplugs might work for a while, but care partners often get their best sleep in another room. Bedrails and a baby monitor for the person with PD may provide reassurance that they won’t fall out of bed and will call the care partner if they need assistance.
Lesson 13: No Vacations for Caregivers
However you and your spouse divide chores around your home, the care partner will eventually be responsible for getting everything done. Even hiring someone five days a week for eight hours a day to help with caregiving tasks doesn’t relieve the care partner from a constant state of worry.
How to cope:
* Don’t feel guilty whenever you do get a break or cut your time to yourself short.
* If you can afford it, hire in-home caregivers. If you can’t afford it, get creative and barter (cook a meal or dessert, pick up groceries, babysit???) in exchange for someone staying with your loved one. As a last resort, bring your loved one with you to book club, bridge/mahjong, or choir practice, etc.
* Continue doing hobbies and crafts that get your mind off your challenges, like gardening, knitting, reading, online games, etc.
Lesson 14: The Pisa Syndrome and Other Stuff They Don’t Tell You
Barbara was very frustrated that her husband’s medical team did not tell her about or offer to help with issues that impacted their social life, like Pisa Syndrome (severe leaning to the side) and drooling. Instead, she had to learn about them and find solutions for them on her own.
How to cope:
* Read, research issues online so you will have a heads up and solutions when you need them.
* Even if the person with PD is embarrassed, ask questions! The solution is for their benefit, after all.
* Attend webinars or in-person talks and/or join a PD care partners support group. These are the best sources of practical advice.
Lesson 15: Overwhelmed
People with PD have good and bad days along a continuum of steady decline. A person with PD’s mood and physical ability can vary greatly so that a care partner may alternate between being a punching bag and a savior. Along with the grief of losing their loved one by degrees, caregiving is an overwhelmingly emotionally and physically challenging labor of love.
How to cope:
* You need someone to talk to. It can be a different person at different times, a whole support group, even a professional therapist, but you can’t do this alone.
* Accept that the person with PD is no longer the person they were. Their thought processes are different. They may have made their final wishes clear, but the final decisions are up to you. Prepare yourself mentally and spiritually for this.
* Parkinson’s is a roller coaster of constantly changing circumstances. This is your new normal.
Lesson 16: Remarks I Could Do Without
Barbara found it infuriating when people told her that her husband looks great, or they hope he is better. Although she understood these comments are polite and well meaning, they are so far from understanding the seriousness of his condition or her depth of exhaustion and grief that she would rather people say nothing at all. Sadly, sometimes the person saying these things was a healthcare professional.
How to cope:
* You have to educate people. They are uncomfortable around people with PD because of the flat affect and soft voice. Remind them that the person with PD is still in there, and if they give the person with PD a chance and allow enough time, they will find that out.
* Doctors often talk exclusively to care partners during medical appointments. Insist that the doctor address their comments and questions to the person with PD and involve the person with PD in their own medical care.
* “Forgive them, for they know not what they do.” Its a good adage if people’s comments are hurtful or make you angry.
Lesson 17: I Want to Scream
Frustration, exhaustion, sleeplessness, and the endlessness of caregiving takes a toll on a care partner’s patience. Screaming lets off steam. Barbara screamed in her head, into a pillow, in the car, even at her husband (which he soon forgot – every time). Her lesson here is that nobody’s perfect.
How to cope:
* It’s okay if you are not a born caregiver. Know that you are doing the best you can and as you learn more you will probably get better at it. You may even find that it has its rewards.
* It is normal to become exasperated and angry from time to time. Find a way to blow off steam so your anger is not directed at your loved one,
* Spend 10 minutes a day in nature. Watch the clouds go by. Listen to the birds. It is restorative, even for a short time. It can help you put your problems into perspective.
Lesson 18: The Imaginary Boyfriend
Barbara’s husband had Othello Syndrome, a type of paranoid delusional jealousy, characterized by the false absolute certainty of the infidelity of a partner leading to preoccupation with a partner’s sexual unfaithfulness based on unfounded evidence.
[Editor’s note: This is also called “Capgras syndrome.”]
Before Barbara learned the term, she was completely taken aback and terrified by her husband’s unbridled hatred and accusations of infidelity. But knowledge is power and learning about Othello Syndrome completely changed Barbara’s reaction to her husband’s continued belief that Barbara had another husband, named Tim. Understanding that the accusations are part of the disease process made her better able to handle them.
How to cope:
* When you first see signs of thought impairment you will have to change how you interact. Little by little, without making a fuss, you will need to take over all aspects of your life that were previously your loved one’s domain. Prepare yourself for this eventuality.
* If hallucinations and delusions become severe, tell your physician. There are effective medications.
* Things that are nonexistent for you are very real for the person with PD and can be scary. Calmly reassure them that their mind is playing tricks on them.
[Denise’s tip: Try changing rooms and offer a distraction or a favorite snack to divert attention from the hallucination.]
Lesson 19: Variability
There is tremendous variability in the symptoms and levels of disability between people who have PD, but there is also tremendous variability in the symptoms and levels of disability throughout the day for some people with PD. Care partners just have to adjust, but it can be unsettling.
How to cope:
* Before you react to anything, consider your response. Remember, it is the disorder causing them to ___.
* Just as you should not compare today’s ability with yesterday’s, you should not compare one person with PD to another person with PD. You may have to remind others of this.
* Live in the moment. Take full advantage of the good days. You can’t count on them and don’t know when you will have another.
Lesson 20: You Have to Laugh
Parkinson’s isn’t funny but life can still be funny when you have Parkinson’s.
How to cope:
* Make comedy and humor a big part of your life. No matter how disabled a person becomes, laughter is always uplifting (it releases dopamine). Laughing at a comedy show together or movie is an enjoyable experience.
* There are aspects of life with Parkinson’s that are funny. Acknowledge them.
* Being able to laugh at yourself is fundamental to good mental health.