When a person receives a diagnosis of Parkinson’s Disease, it is frightening for the individual as well as for their loved ones. You want to know how the disease will progress, what treatments are available, how bad it’s going to get, and how long it is going to last.
These are all valid questions, but there are no definitive answers. Vicki Conte, Program Manager for the Department of Neurology at Froedtert and the Medical College of Wisconsin, leads a number of support groups for people with Parkinson’s and their care partners. She says that “no one can predict the direction the disease will take. One person may still be driving 15 years after receiving a diagnosis. Another one may become quite disabled in a much shorter period of time.”
Parkinson’s is generally diagnosed when a person is experiencing at least two of the following:
- Shaking or tremor at rest
- Rigidity or stiffness
- Slowness of movement
- Difficulties with balance
For individuals with Parkinson’s, home care can be complicated, as it is a progressive disease, and because there are multiple other symptoms that create hardships for the people who have it as well as their care partners. Three of the most challenging situations for couples may be the effect Parkinson’s has on a person’s communication skills, cognitive abilities, and behavior.
Communicating with loved ones can become extremely difficult if they develop “facial masking” because you can no longer gauge their mood or meaning by reading the expressions on their face. When facial muscles become immobilized, a person is left with a constant, flat expression.
Your wife may be enjoying herself, but it is not evident because she no longer smiles. Your husband may be intrigued by what you’re saying, but he may appear to be bored, depressed or even angry.
A friend of mine recently told her husband, “If you’re happy to see me when I walk in the door, you’d better start telling me, because when I look at your face, I don’t think you give a hoot whether I’m here or not!”
Another issue that complicates communication is the fact that Parkinson’s often weakens a person’s voice to the point that often they cannot be heard.
Parkinson’s impacts a person’s ability to process information. Multi-tasking becomes nearly impossible because a person with Parkinson’s can only concentrate on one thing at a time.
Conversation requires great effort, because it takes longer to process information. A woman might ask her husband what he’d like for breakfast. By the time he’s thought about the question and decides he’d like scrambled eggs, she’s lost patience waiting for his answer and demands, “Well, what do you want? French toast or oatmeal?”
This is frustrating for people who have Parkinson’s, because they know they are not keeping up. Expressing themselves requires exhaustive effort. By the time they think about the question and formulate an answer, the conversation has moved on or their care partner has already made a decision on their behalf. (This is true for elderly people who have Parkinson’s disease as well as those who have early onset Parkinson’s.)
One of the most surprising and challenging aspects of Parkinson’s is the impact it can have on a person’s personality and behavior. Depression, anxiety, sleep disturbances, hallucinations, and psychosis are not uncommon.
Medication can help. The most common treatment replaces dopamine in the brain. Dopamine is the chemical that controls physical movement and the pleasure control center in our brains. Replacing it through medication can be tremendously beneficial. It also has a downside.
A few years ago I spoke at a caregiving conference about dementia-related inappropriate sexual behavior. Afterward, one of the attendees came up to me and said she was furious with her husband. When she’d opened her cable bill earlier that week she ran to the phone in a panic, called the cable company and said, “There’s been a terrible mistake! You have billed me for more than $700 worth of porn! We don’t watch those kinds of movies in this house!”
The cable representative put her on hold for a few minutes. When he came back on the line he said, “Ma’am, I’m really sorry, but someone is watching those movies at your house every morning between 2:00 and 5:00 a.m.”
Doctors don’t always tell you that dopamine can lead to obsessive behavior. People who have always been rational and responsible can suddenly start doing some very strange things in a repetitive and obsessive manner. Sometimes it’s a harmless activity like sitting up all night and tying fishing flies or making beaded bracelets. It can also lead to more disturbing behaviors such as sexual fantasies and addictions, as well as financially destructive behaviors such as gambling and compulsive shopping.
This happens in a fairly small percentage of cases. If you witness compulsive or obsessive behavior in your loved one, you would want to report it to the Neurologist as soon as possible.
How Do You Cope?
Caring for a loved one with a progressive and degenerative disease is one of the most difficult and generous acts of love any of us will ever be asked to perform on behalf of another. There is nothing that can make this journey easy, but there are some things you can do that will help you maintain your own physical, mental, emotional and spiritual balance as you go through it:
- Understand that you will need to make constant adjustments to ongoing changes. Just about the time you have accepted and adapted to one set of circumstances, something will shift and you will have to adjust to something different.
- Accept that your loved one is not intentionally acting lazy, inattentive or anti-social. Living with Parkinson’s is exhausting mentally and physically. It may take them several minutes to process information and to react to situations that you can process instantaneously.
- Rely on verbal communication more than facial expressions to interpret your care partner’s emotional state.
- Learn everything you can about the disease and the impact it may have on your care partner. Attend conferences and turn to reliable online resources such as:
- Participate in one or more support groups. Support groups for couples who are living with Parkinson’s can be beneficial because it provides socialization and support for both the care receiver and the caregiver. It may also be important to attend a caregiver only support group. There are times when every caregiver needs to vent. Having a safe place to express negative emotions out of the earshot of your care partner can be very therapeutic.
- Ask for help. As your loved one loses physical and cognitive abilities, more and more responsibilities will fall on your shoulders. Know your limits. Determine what you need, and then don’t be shy about asking for help from family or friends or hiring professionals to do what you cannot do yourself.
- Develop a plan for your own self-care. You must understand that self-care is not selfish. In order to maintain the physical, emotional, mental, and spiritual strength you’ll need to care for a loved one over an extended period of time, you must make self-care a priority.
- Take care of your body. Get enough rest, eat right and exercise regularly so you can maintain the physical strength you’ll need to care for your loved one.
- Stay engaged socially and do activities that bring you some pleasure so you will have the emotional strength to get through a rough day or a sleepless night.
- Find something that nurtures your soul. It may be meditation, prayer, music, art, or nature. If there is something that sparks your imagination and ignites your spirit, find a way to do it on a regular basis.
Living with Parkinson’s Disease is not easy. Caring for a loved one who has it will test your love, faith and humor on a daily basis. Understand that this is a difficult journey, and that perfection is impossible. Aim to do the best you can. If you have a day when you are not as patient, kind or as saintly as you wish you could be, remember you’re only human and cut yourself a little slack.
Elaine K Sanchez is an author, speaker and co-founder of CaregiverHelp.com, a video based caregiver support program. She co-teaches “Gero 407- Caregiving” at Western Oregon University with her husband, Dr. Alex Sanchez. She also writes the daily blog, “Caregiver Help Word of the Day”.