On September 26, the Stanford American Parkinson Disease Association (ADPA) Information and Referral Center hosted author Barbara Sheklin Davis for a webinar on PD caregiving. Barbara cared for her husband, Leslie, who had Parkinson’s for 20 years. Barbara shared her hard-earned wisdom and practical advice, drawing from her book, “Advice From a Parkinson’s Wife: 20 Lessons Learned the Hard Way” (2019).
We first heard of Barbara’s book “Advice From a Parkinson’s Wife: 20 Lessons Learned the Hard Way” (2019) from a Stanford Parkinson’s Support Group member who raved about it and greatly appreciated Barbara putting down on paper what they were thinking, feeling, and struggling with.
Key takeaways and highlights:
The Nature of Parkinson’s: Barbara describes Parkinson’s as a “killer” that affects not only the patient but also their loved ones and relationships. She emphasizes the importance of understanding Parkinson’s, including its less visible challenges like cognitive decline, mood changes, and even psychotic episodes.
The Strength of People with Parkinson’s: Despite the challenges they face, Barbara highlights the strength and determination of people with Parkinson’s. She describes them as “the bravest, strongest, and most inspiring people on the planet.” She urges caregivers and others to acknowledge and understand that they fight daily against an unseen enemy and win battles over and over again.
Barbara explained how anosognosia, a common symptom of Parkinson’s where individuals lack awareness of their own limitations, can create unique challenges for caregivers. The person with Parkinson’s simply does not realize how disabled they are. She stresses the importance of understanding anosognosia. If those with PD don’t acknowledge that they are likely to fall, that they fall, and that they fall often, then they are not going to take steps to prevent falls. This complicates the caregiver’s job, as caregivers are perceived as offering assistance when none is needed.
The PD Caregiver: Barbara shares her caregiver’s experience, including the emotional toll, the unexpected challenges. She shares the story of her husband’s psychotic episode, emphasizing the unpredictable nature of the disease. She shares that she did not know and was not told prior to experiencing it that the psychotic episodes could occur for people with PD, and wants to spread awareness that those behaviors are part of the disease process. Those behaviors are awful, but the person with Parkinson’s sometimes cannot control their behaviors or what they perceive any more than they can control their bodies.
Advice for Caregivers: Barbara offers practical advice for caregivers, such as seeking support, prioritizing self-care, not feeling guilt, and advocating for their loved ones. She encourages caregivers to be patient, understanding, and focus on maintaining connection with the person they are caring for.
Grief and Loss: Barbara shared her experience with grief and loss after Leslie’s passing. She acknowledges the pain and difficulty of this stage.
Caregivers are Warriors: Barbara concluded by recognizing the vital role caregivers play and encouraging them to find strength and meaning in their journey. She reminds them that they are not alone and that their efforts make a profound difference.
Want to Learn More?
A recording of the webinar can be found on the Stanford ADPA YouTube Channel
Read Stanford’s Denise Dagan’s review of the Barbara Sheklin Davis’ book “Advice from a Parkinson’s Wife: 20 Lessons Learned the Hard Way.”
Explore resources for PD caregivers from the Stanford Parkinson’s Community Outreach site:
Caregiver Corner
Parkinson’s Disease Caregiver Resources
The topic of sexual dysfunction was raised during the Q&A session. Here’s a link to the Stanford Parkinson’s Community Outreach webpage on this symptom:
Sexual Dysfunction in PD
And now, onto my notes from the webinar and question-and-answer session.
– Elizabeth
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“Barbara Sheklin Davis: Caregiver Experience”
Speaker: Barbara Sheklin Davis
Host: Stanford’s APDA Information & Referral Center and Stanford Parkinson’s Community Outreach Webinar Date: September 26, 2024
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Introduction to my husband
Leslie Davis, PhD had a doctorate in chemistry and was a very bright man. On his gravestone, we wrote, “Before Google, there was Dad.” He was a composer, a musician, a magician, a photographer, a teacher, and a chemist. I met him when I was 14, we were married when I was 20, and we were married for 55 years. For 20 of those years, he had Parkinson’s disease.
The Reality of Parkinson’s Disease
Parkinson’s is a killer. It will kill the person you love, it will kill your relationship, and it will kill you if you let it.
Parkinson’s is a deadly, incurable neurodegenerative disease that never goes away and slowly eats away at your life, creating situations for which you are unprepared and which make feelings of hate and despair overcome feelings of love and hope. Parkinson’s has no redeeming features.
Unseen Challenges
People with Parkinson’s are some of the bravest, strongest, and most inspiring people on the planet. They fight daily against an unseen enemy and win battles over and over again. Whether or not they have dementia, they spend every minute of every day coping with tremors, falls, stiffness, hallucinations, freezing, and other aspects of Parkinson’s disease. Yet people survive the experience and live life to the fullest. They persevere despite the way they look, the way they talk, or the way they feel because they want life to go on, and it’s our job to help them.
Getting through a day with Parkinson’s is worthy of a medal, but most people don’t realize how taxing it is. Every day is different; every day is a challenge.
Parkinson’s did not stop my husband and me from going to Florida for two months every winter or from going on a cruise to Alaska. We had to make some modifications and we had to take his limitations into account when planning, but we did it, and we had a wonderful time, and we made wonderful memories.
Importance of Support for Someone with Parkinson’s
Parkinson’s makes you realize how important friends and family are, and it helps you to distinguish true friends from fair-weather friends. I will be eternally grateful to one couple who kept inviting us to go out to eat with them, even though my husband kept leaning onto the wife. I will always cherish another friend who always made it a point to ask Leslie’s opinion about current events, even though my husband was sitting there looking like he had no clue. And the friends who didn’t mind that he drooled and dropped food and took a very long time to finish a meal.
Our young granddaughter at Leslie’s funeral said, “Some people stare or get embarrassed when they are around someone different, but I’m not, not with my grandpa. I’m proud of him. I love you, Grandpa.” Parkinson’s teaches you what is really important in life: people who love you, people who truly care about you.
You can never underestimate what a person with Parkinson’s is thinking, doing, or feeling. My husband was an extremely bright man. As Parkinson’s kept him sitting in a chair showing no emotion on his face, it would have been easy to think that there was nothing there. That would have been a terrible mistake. He was acutely aware of what was going on around him but chose not to comment on it and to participate only when he felt like it. You kind of figured he didn’t know or care about what was happening, but you would be wrong.
Grandchildren, nieces, nephews, or the children of friends are extremely important for a person with Parkinson’s. Children like to be helpful, they offer to bring things, they run for the walker, they remind the person with Parkinson’s to do things. Most of all, they offer unconditional love and comfort and they make the person with Parkinson’s feel valued, wanted, needed, and still part of the family. It doesn’t matter how ill the person with Parkinson’s is, they still matter to the children.
Caregiving: The Emotional and Practical Toll
What happens to your life when your parent, spouse, or partner is diagnosed with this disease? It’s going to change and it’s not going to change for the better. You will have to deal with things that you never imagined.
The Olympic cyclist and person with Parkinson’s, Connie Carpenter-Phinney, said: Living with an incurable disease like Parkinson’s is very different from living with a terminal illness. This is the disease you’re going to live with for a very long time, so you really have to make peace with it.
There were so many things I did not know until I experienced them. There is so much the doctors don’t tell you. I hoped that by writing the book I could spare others the pain of not knowing that these behaviors were Parkinson’s and not the person with Parkinson’s. This book has helped people cope with the challenges of Parkinson’s caregiving.
Caregiving: Psychotic Episodes
Since my husband died, I have come to realize how horrible it must have been for him to be unable to trust what he was seeing and what his mind was telling him. My husband saw things—foxes, cows, me with another man—and he thought they were real.
One of the most awful incidents of our Parkinson’s journey started on a Saturday, when there were no doctors available. My husband had been acting strangely, so I took him to the emergency room, but they found nothing wrong. After, we went to a family dinner and on the way there, he pointed out the little foxes on the side of the road (there were no little foxes). When we got home, there was a message from the emergency room that Leslie had a urinary tract infection and that a prescription had been sent to the pharmacy.
Sunday morning he had breakfast, and he seemed fine. I settled him in his chair and said I would just run to the drugstore to pick up the prescription. I returned home 20 minutes later, and my husband, who never ever used a four-letter word in his life, said, “Who the f*** are you?” He grew angry. I had my phone in my hand and started to use the camera to document his behavior, but he grabbed it out of my hand and threw it across the room. “You’re trying to kill me,” he said, and he ran into the bedroom. I called 911.
It took five men to grab my husband who ran out of the house when they arrived, wrap him in a blanket, and strap him to a board to take him to the hospital. He was yelling that he was President Obama and that people were trying to assassinate him. At the hospital, he was yelling and throwing things. I kept saying, “This is not my husband, he doesn’t act this way, there’s something wrong.” They did spinal taps and other tests, they did not know what was wrong. We never got a diagnosis. After four days in the hospital, where he was agitated and trying to escape, he returned to normal. He didn’t remember anything of what happened, but I will never forget it. Thankfully, we never had another psychotic episode, but I’ve heard of many people with Parkinson’s who become violent even though they were never like that before.
How does one cope with this kind of behavior? It helps to know that it is part of the disease process. It is not personal, it is not directed at you. It’s awful, but in a sense, it’s not real. They cannot help themselves any more than they can control their bodies. You have to know this to survive.
Caregiving: Insights from experience
The reason my husband took so long to go to the bathroom, or to get dressed, was not that he was trying to annoy me, but that time for a person with Parkinson’s has a very different dimension than for a person without Parkinson’s.
Falling was inevitable no matter how hard I tried to prevent it from happening.
He was keenly aware of people who did not respect his integrity and of paid caregivers who were too bossy even if they were efficient.
Having Parkinson’s changes a person, but it does not change their inherent humanity. Even though they may not be able to feed themselves, walk, speak, make love, even smile, they are still people and they still need to feel good about themselves.
Conundrum of caregiver:
You have so much to do, so many things you never expected to have to do, so many things you weren’t trained to do, and you don’t really get the appreciation you feel you deserve. Then you feel bad about yourself because you know that you are, generally speaking, relatively healthy. You don’t have the right to complain, but you also do have the right to complain. Even though, 1) Nobody wants to hear you, and 2) You feel guilty about complaining. And the one person to whom you used to complain to, is the very same person whom you want to complain about.
Caregiving: Self-care
Self-care is defined as the practice of taking action to preserve or improve one’s own health. It is further defined as taking an active role in protecting one’s own well-being and happiness, in particular during times of stress. In an earlier age, self-care was not a thing. Selflessness was a thing, and its opposite was selfishness. The ability to stand up for oneself, to take an active role in protecting one’s own well-being and happiness is something I wholeheartedly endorse. And the fact that you can do it now without being made to feel guilty is a tremendous step forward.
Caregiving: Guilt
Caregiver’s guilt is a real issue for many and the feeling of guilt needs to be rejected. You will be a more effective caregiver if you care for yourself. Selfless service is neither a healthy nor a realistic expectation. Caring for yourself will allow you to be a better caregiver and to provide better care for your parent or partner or spouse for a longer period of time. You should not feel guilty about caring for yourself. It simply improves the care that you can provide for another.
Therefore, get help. Get help with the house, help with the parent or spouse. Get help in the form of a family member, a support group, a friend in a similar situation with whom you can commiserate. I have read that caregivers should get an hour a day and a day a week of respite. Aim for this. Be creative in how you get what you need. Maybe the hour a day comes when the person with Parkinson’s is watching a favorite television program. Then you can get in the bath or sit down with a book, or invite a neighbor over for coffee, or watch a TV show that you like on a different TV set. Tell your person with Parkinson’s that this time is your time and that it will only last an hour, but that hour is sacred to you and he or she must honor your time while they are otherwise occupied. Stick to your guns, it will work.
Getting out of the house is a little harder. It can be expensive to have a paid caregiver, but it is worth the money if you can find the right person and can afford it. Or have a family member or a friend come over, or maybe someone from your church or synagogue. It may take some effort to find the right person, but it will pay off in the long run for both you and your person with Parkinson’s. Don’t feel guilty about it.
Caregiving: Anosognosia
The cognitive impairment of people with Parkinson’s affects their self-perception. They simply do not realize how disabled they are. The name for this phenomenon is anosognosia. It means “lack of insight” and impairs a person’s ability to understand and perceive his or her illness. This complicates the caregiver’s job, as they are perceived as offering assistance when none is needed.
If you don’t acknowledge that you’re likely to fall, that you do fall, that you fall often, you are not going to take steps to prevent falls. That was why he avoided using the walker as often as he possibly could. That was why he fell so much. As frustrating as it was for me, it was equally so for him, since he sees nothing wrong with what he is and does and can’t understand why I’m so worried about him. But maybe it’s a blessing. Maybe it’s nature’s way of diminishing somewhat the awareness of how devastating Parkinson’s is.
How to cope:
Remember that this is a medical condition caused by deterioration of parts in the brain. It is not stubbornness or denial. Don’t try to prove or insist on the person’s limitations. This will only upset them and frustrate you. Instead, do your best to make changes discreetly, arranging things subtly that will help ensure their safety.
Be compassionate and supportive even if the person with Parkinson’s refuses physical therapy, forgets to use the walker, still thinks he can drive or travel to faraway places. He’s not doing it on purpose. Be gentle and understanding and try hard not to lose your patience.
Allow him or her to do as much independently as possible while remaining alert and available to help. Find ways to help preserve pride and, above all, be patient. You understand what he or she is going through, even if they don’t.
Grief and Loss
“You’re going to be a widow, Barbara,” the doctor said. My husband had Parkinson’s disease for 20 years, he had a kidney transplant, he had dementia. He was not a healthy man. I left the doctor’s office in shock. I did not want to let it happen. I fought harder. I did things I never thought I could do, I brought in help I didn’t want. I wanted to fix him, cure him, and take care of him. But ultimately, I could not save him, no matter what I did. My only consolation was that he seemed to be at peace and he slipped away without pain or anguish and left me with my pain and anguish.
During my husband’s illness, I had moved out of our room and slept in an adjacent room. I could not return to our marriage bed when he died. I could not sleep in another bed either. After years of listening in my sleep for him to move around or wake up, I found that I didn’t sleep any better when he wasn’t there. I was still listening for him, still waking and thinking I heard him call for me. Because the fact is that no matter how difficult it is to never have a restful night’s sleep when he was alive, I missed that when he was gone. I wanted to hear him snore or cough or call. I wanted him to be there.
I read a book called “American by Day” by Derek Miller, which described a young girl’s reaction to her mother’s death, noting that it did not upset her so much that her mother died as much as it baffled her that her mother would continue to be dead each morning. That was exactly how I felt. I knew he was gone, but each morning I wanted him not to be gone.
Caregivers are Warriors
Your job as a caregiver is extraordinarily hard. No one except another caregiver knows what you are going through, what you have to do. In some ways, it is a thankless task, but in other ways, it is the most meaningful thing you will ever do in your life. I would give anything to have my husband back, even with all the difficult things that caregiving involved. I won’t tell you to enjoy the rough ride, but I will tell you that the rough ride is something that ennobles you because it gives your person with Parkinson’s what he or she desperately needs as they struggle to live with this dreadful malady.
You deserve a lot of medals as well as sanctification and you are providing the most loving and vital service to another human being that can ever be provided. Even if you are sometimes resentful, angry, exhausted, and on the verge of giving up—don’t.
No other illness involves as much physical and mental deterioration as does Parkinson’s. This was not always well recognized. For too long, Parkinson’s was considered a disease characterized by tremors, rigidity, slowness of motion only. Only recently has the complexity of this neurodegenerative disease come to be recognized. There is now increasing awareness that Parkinson’s is a systemic disorder with many non-motor symptoms such as sleep disorders, sensory and cognitive impairment, dementia, and psychosis. Parkinson’s care partners have had this knowledge for far longer; everyone else is just catching up.
If you are a Parkinson’s caregiver, you are a member of a club that nobody wants to join. But it is a club of strong women and men who have found and continue to find ways to serve and to survive. The end will come, and when it does, it may not bring relief even though you think it will.
You are warriors. You are brave, you are strong, you are tireless, you are kind, you are loving, you are giving. Doing this is hard but you will keep going because you have to. You will still care because you are a caregiver, a care partner, and that caring is what they desperately need.
I want to end with a verse from a poem that was read by our rabbi at Leslie’s funeral: “It is not our purpose to live forever; it is only our purpose to live. It is no added merit that a person lives long; it is a merit only that their life is good.” And there is no better life than that of a Parkinson’s caregiver.
Thank you for what you do and thank you for being here today.
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Question-and-Answer
Question: You said that you didn’t get a lot of help from the neurologist, and then later you said that their information has come a long way, so that they’re more aware of all the non-motor symptoms. How long ago did Leslie pass away?
Answer: Five years ago, almost five years ago last week. I would say in the last five years, you’re right, there’s been a lot more education among neurologists. The other thing I found was that gerontologists were very helpful because they just do a lot more than the neurologist did.
Question: Did his kidney transplant have something to do with the reason he died?
Answer: No, he had Parkinson’s before he got the kidney transplant. One physician locally said that he would not do a transplant because he thought it would increase his tremors. But then we went to Albany Medical Center, and they said Parkinson’s would have no impact on the kidney transplant. It had no impact at all, and he had the kidney for 15 years.
Question: You didn’t want to join a Parkinson’s support group because you didn’t want your free time to be obsessed with Parkinson’s in addition to your daily task. Did you read books by other Parkinson’s caregivers?
Answer: I did not when I started. In fact that’s why I wrote mine. I know that for many people a support group is invaluable. I’ve even spoken before a couple of support groups, and I know that those people have found a bond. I have one friend who joined a support group when her husband was alive, and then after he passed, she stayed with the group because she had found friends there and wanted to support other people who were dealing with this. So that was just my personal thing, but I certainly would suggest that if other people find that to be useful, that they go for it.
[Moderator comment: Stanford runs 6 Parkinson’s caregiver only groups, a lot of people are unaware that caregiver only groups are a thing, but it is good to have some time for caregivers to express their true sentiments without having the person with Parkinson’s in the room. There can be a joint meeting with a speaker and then separate the people with Parkinson’s and the caregivers into different rooms.]
Question: What helped you cope on the bad days?
Answer: There’s something called a screaming pillow. You can find one on Amazon. It’s very helpful, you just scream into the pillow.
[Moderator comment: I have also heard that if you need to talk to someone and there’s not a friend available, you’re in between support group meetings, just talking to a stuffed animal or the four walls and getting it all out in complete sentences can really help you feel a lot better and think through any challenges that you’re facing.]
Question: Do you have any tips for navigating those personality changes?
Answer: I think you just have to remember that it’s the disease, it’s not the person. It’s hard sometimes, but you have to remember that inside there, there’s still that person that you love. They’re still there in some way.
Question: Knowing what you know now, what is your number one advice tip to newly diagnosed couples?
Answer: Read the book! In the reviews on Amazon, there are people, probably in the early stages, who find the book scary and depressing and don’t want to read it. So maybe don’t read it right away. There are resources for newly diagnosed people. In our case, it was a gradual process. At the beginning, we could still do things.
The one mistake that I made, was I retired from work and then I went back to work and I thought, “Well good, we could travel more because I’m going to make some money and we could travel more.” But in those two years, we lost the ability to travel. He just couldn’t do it anymore. So my recommendation is when you get the diagnosis, do as much as you can for as long as you can. Don’t save money for the future. Don’t put off the travel, do it while you still can and you can still enjoy it.
Question: It would be so nice if there was a kit that families received upon a Parkinson’s diagnosis to help understand and prepare. Delays in acceptance can be very impactful, especially if cognitive decline sets in. What would you put in a kit for newly diagnosed people?
Answer: At the beginning, it wasn’t that debilitating, so you get the diagnosis and you can still keep going ahead. You just kind of have to adjust little by little. It doesn’t end your life when you get the diagnosis. When you get the diagnosis, it doesn’t stop things. For everybody it’s different. Physical therapy and exercise can be beneficial for people with Parkinson’s, although it’s not something my husband ever wanted to do.
[Moderator comment: I met a couple at a conference before COVID. They were working with the Parkinson’s Foundation because they felt like they were slammed when they heard that diagnosis and they didn’t know what it meant. After living with it for a while, they approached the Parkinson’s Foundation and they said that the Parkinson’s Foundation website should really say ‘don’t make any big decisions for a year after getting a Parkinson’s diagnosis.’ See what this disease is all about, learn, and experience it before you decide whether to quit working job or selling your house, etc.]
Question: Folks don’t feel comfortable talking about the changes in your sex life or intimacy with Parkinson’s, and you just discussed a bit about that in your book. Do you want to share with the listeners today any thoughts on that subject?
Answer: It’s kind of hard for me to say because I don’t know that we can generalize from our experience. But I know that people can continue to have a loving relationship. It may not be the same as it was when you were young, but there’s no reason why love stops when you get Parkinson’s. People still need to be hugged and held and cuddled. One could research that topic and learn more that would be pertinent to the individual.
[Moderator comment: On the Stanford Parkinson’s website, there is a section under symptoms about sexual dysfunction and a couple webinars with talks by sex therapists and they give good ways to rethink how to approach intimacy and open communication.]
Question: One comment from the chat says, “My husband had Parkinson’s for 25 years, this is the first time I’m hearing about personality changes. I like being convinced you were having an affair.”
Answer: There’s something called the Othello syndrome. My husband was convinced that I was having an affair with a rock musician named Rick who drove a white car, and that Rick and I were married in the basement with a lot of people there, and they were all smoking cigarettes. Rick appeared from time to time in our lives, upsetting him tremendously each time. Of course, Rick did not exist, but Leslie saw him. He had these elaborate stories about my affair. It’s called the Othello syndrome because this jealousy is a symptom of Parkinson’s. It’s like the gambling; apparently, it has to do with the levels of serotonin or something, but I’m not a doctor, however that is one of the peculiar symptoms of Parkinson’s.
After I finally realized that it was the disease, I would calm him down and we would talk about it and I assured him that I loved him, that Rick did not exist and eventually he would calm down and we’d go on. It was really helpful to know that it wasn’t just him and me; it was something that happens to those with Parkinson’s.
Question: Did any of the neurologists ever suggest that Leslie’s diagnosis should be changed (to Lewy Body dementia) because of these delusions?
Answer: No. It’s one of the uselessness of the neurologist. They were very concerned with his physical symptoms. It could be just where we are or the hospital here. The man who diagnosed him, diagnosed him as we walked down the hall to his office. We walked in, we sat down, and he said to my husband, “You have Parkinson’s.” Leslie was a teacher and a chemist, and the students were complaining that they couldn’t read his handwriting on the blackboard because it was so small. His presentation was funny, it was in the legs rather than the hands, and it was this small writing.
Question: Did your husband learn all he could about Parkinson’s once he was diagnosed?
Answer: He had that book from his neurologist on the scientific basis of Parkinson’s, I think he read it, but then I don’t think he ever picked it up again. He really hated Parkinson’s. He did not want to learn any more about it than he had to. It’s important to have physicians who watch carefully to make adjustments and make sure medications are appropriate.
[Moderator comment: Sometimes doctors don’t explain very well. If somebody complains that they’re not sleeping well or if they’re anxious, the doctor should explain that it is time for a medication adjustment for motor symptoms and that it should help bothersome non-motor symptoms as well. Doctors should be specific about when to come back and make a referral to specialists if the medication change doesn’t help non-motor symptoms. Patients have to know that they may need to ask those questions if your neurologist isn’t specific. That’s another reason I think that support groups are good to attend so you can learn what you need to advocate for.]
I recommend a book by Joseph Friedman MD called “Making the Connection Between Brain and Behavior: Coping with Parkinson’s Disease” that was my bible and there is a new edition. It answers almost every question.
Question: My wife seems rather self-absorbed and rather selfish. She will go in the kitchen, make herself a cup of coffee and never offer one to me. Is that the kind of changes that you saw in your husband?
Answer: It was very different. I think it happens with age. That’s why I say a gerontologist can be really great. I think they have to focus so much. There’s so much work that goes into something as simple as making a cup of coffee that they don’t even have the energy to think about another person. I think if you understand that, you won’t take it personally. I admit it’s very frustrating.
Question: Could you comment about having a neurologist versus a primary care physician versus a movement disorder specialist?
Answer: It’s interesting that that doctor that we saw, I now see he’s listed as a movement disorder specialist. So I think that title may have evolved, but I never heard the term (movement disorder specialist) 25 years ago. I think it’s really important having a doctor that you like, that you feel comfortable with, that you can talk to. As I said, the first one was amazing for us, and this second one was a very nice man, but he was too busy focusing on being positive and measuring whatever he was measuring.
I have a chapter in the book about going to the doctor. It’s sometimes good to separate the person with Parkinson’s and the caregiver. I feel as though the caregiver should get an appointment with the doctor because it’s hard to ask those questions when the person’s there, because again you don’t want to make them feel bad, you don’t want to humiliate them, you don’t want to embarrass them, you don’t want to scare them. But there’s stuff you need to know.I always felt that I wanted to make another appointment with me as the spouse.
Question: Impulse control issues have been the most challenging for me, did you experience impulse control disorder with Leslie?
Answer: Only to the extent that if he wanted to get up and do something, he’d get up and do it. There was not much you could do about it.
[Moderator comment: One person in the chat saying that there are surprises like dysregulation of blood pressure. I think it’s very common to have blood pressure drops with Parkinson’s because all of the nervous system is affected and that’s the autonomic nervous system so particularly upon standing there can be blood pressure changes.]
One interesting thing about falls that I learned is that they tend to fall soft, so they don’t always get hurt. Not every fall is that bad. They fall frequently. However some falls can be devastating so you want to make sure there are no rugs and have hand rails. Provide something they can grab onto.
Question: How do you cope with walking away from some of the personal dreams you have for retirement?
Answer: Think of a way you can still do it. I put my husband in a wheelchair and we went to lots of concerts and we went to anything that I could get him to and even going out to dinner was important to him. We didn’t give up, we tried for as long as we possibly could. There comes a time when you can’t anymore, but you keep trying.
[Moderator comment: Grief support would be good.]
Question: Did your husband experience apathy and how did you approach that?
Answer: Yes, if he didn’t want to do something, we just didn’t do it. I couldn’t make him do something that he didn’t want to do. On the other hand, if there was something he did want to do, I’d move Heaven and Earth so that we could do it. Eating out was a big part of our lives. We had a wheelchair. You can get an aluminum one or a steel one, go for the aluminum because it’s much lighter.
Question: Did your husband consider DBS, deep brain stimulation?
Answer: He would have wanted it, but they kept telling him that he should wait. It was too early, and then it became basically too late. It could have been a factor with the doctors in our area. If you are not happy with the doctors in your area, look around.
[Moderator comment: I believe the thinking many years ago about deep brain stimulation was that you can do it too early. Since then, the technology has advanced and they may have changed their tune so now you don’t have to wait until you’re older to get DBS. He was 57 when he was diagnosed, which is young, now there are entire organizations just for young onset Parkinson’s.]
Question: I have to keep reminding my husband to drink water for his constipation, I am not sure if it is because he is stubborn, the memory problem, or his apathy. What should I do? I resent having to remind him all the time.
Answer: I think it is a medical issue or all of the above. Also interestingly enough, the less you drink, the less you feel thirsty which sounds counterintuitive. I would suggest getting in liquid in different ways, my husband was the same way. You can do ice pops, any form of liquid is good.
[Moderator comment: Juicy fruits, like watermelon or melons could be good. Or if you have a problem with low blood pressure, you may be able to get away with salty foods to drink more. A dietician can help. Comments from the chat show that walking 20 minutes a day helped with constipation, and also frozen fruits like (grapes, mangoes or bananas). One person put slippery elm in their husband’s water. Also prunes, and pears. Pear juice from KernsⓇ nectar with MiralaxⓇ helped.]
Question: How did you find a gerontologist?
Answer: I did not actually find one. I have a cousin and she came to Leslie’s funeral. She lives in Massachusetts and I was talking to her and it was eye-opening. Here was somebody who understood everything I was talking about, had ideas and suggestions. So that’s when I realized that gerontologists, who deal with old people who have many similar symptoms, as the brain ages, it does weird things. So that’s where my love of gerontologists kind of comes from.
Question: Any suggestions for ongoing daily nausea from waking up till early afternoon every day?
Answer: I don’t know. Talk to the doctor about that one.
Question: How do you cope with anosognosia?
Answer: I think you just have to be aware of it. In some ways it’s a blessing because they don’t know how disabled they are. But it’s very stressful to try and keep someone from falling.
Question: Did you often meet your goal of one hour a day to yourself?
Answer: No. It’s much easier to give advice than to follow it. But eventually, my son-in-law hired some help for me. I think we had four hours a week, so two days for two hours. I just had to get out of the house. Luckily, we had a very good caregiver. I came home one day and Leslie started telling me everything about this woman. Her name was Katie, he knew Katie’s backstory. I know everything about Katie because apparently he connected with her, he liked her. So he was very talkative. I had another person, she was very, very efficient. She’d come to the house, first thing she’d strip the beds, fix the bed, etc. He didn’t like her at all. He was very perceptive. He was very aware of who was there and how they treated him.
[Moderator comment: My mom had Alzheimer’s and my dad had Lewy Body dementia and I learned over the years that one of the last things to go with memory issues is the social niceties and the connection with people and knowing when someone really gets you and really cares about you and when they don’t. One thing that people often forget as a resource around hiring in-home care or moving into Assisted Living, is that there are Adult Day programs, so Google “Adult Day programs near me” and you may find some options. They can be pretty expensive, maybe around $100/day and they can be from 9am to 3pm and sometimes those programs have transportation and support groups at the care center.]
Question: My husband and I live in an independent living situation. He needs to move to memory care but insists that I move with him. What can I say?
Answer: I don’t know that they would let her if she’s not disabled.
[Moderator comment: She may be able to move to a property that has a memory care on it. Maybe consider hiring in-home help, but it would be expensive to hire 24/7 help. A board and care depending on the person or their abilities in their neighborhood or in their area could be a good option so they are not that far away.]
Question: Somebody wrote a question about music. Should we get into that?
Answer: There is a book by Oliver Sacks about the brain on music. My husband loved music, and that was always something that was very nice for us. We would go to concerts as much as we could. I would always play music in the background for him because it was very nice. There are also studies that show that people can move to music, in ways that they wouldn’t if the music wasn’t there. So music is a wonderful thing to add joy to your life.
[Moderator comment: And it can help your gait. For some reason your brain can sync in time with the beat and help with freezing.]