When your loved one is first diagnosed with Parkinson’s disease, there is an immediate reaction of horror within both of you. This gut reaction stems from disinformation you’ve collected in your subconscious over the years, and it is reflected in your fear of what you think you know and of the actual unknown.
Some people will immediately quiz the doctor. What is it? What happens? How do you treat it? Others take the news and internalize it in the beginning stages of denial. “Uh-uh. Not me. I don’t want it, and I’m not going to have it. I’m outa here.” Some react with rage: “How dare my body do this to me!”
There are as many reactions to the diagnosis as there are people in the world. Each response is personal. Each is natural. And fearing the unknown is common to us all.
For the one diagnosed, there is the fear of intolerable pain and personal embarrassment along with your fear of loss of independence/dignity and personal control. There is also the fear of losing intimacy with your partner and sexual attractiveness.
The care-giving partner also has fears. The prime one is a daunting prospect: you immediately recognize that your own life is forever limited by the disease afflicting your loved one. How daunting depends on your personal health, personality and circumstances. By your nature, you may be more predisposed to be a more effective caregiver than others who live with compromised health or independent interests.
The most important thing to understand is that there is no wrong way or right way to be a caregiver.
That’s difficult to grasp at the outset because many caregivers immediately experience guilt similar to survivor guilt. Why? Why not me instead? Sometimes it does seem easier to be the afflicted one rather than the observer. But it’s not true. There is nothing easy for everyone involved.
Those dominated by guilt act with pity. They overcompensate by trying to do too much. They become advocate, nurturer, nurse, and servant. They put themselves last in the act of providing tender loving care. Similar to a workaholic, they learn their service is never finished. Their sole reason for being becomes the dedicated care of the one with the disease.
Even those caregivers not dominated by guilt periodically feel it and are driven by it. This is why movement disorder clinics provide social work services as well as physiotherapy for both the patient and the caregiver. They are there to help you learn to cope, to suggest practical resolutions to the frustrations and problems that arise. This includes forming group sessions that allow you to vent, perhaps with other caregivers where no patients are present.
Those with the disease can also meet with others like them where they can share their experiences and talk about ways they’ve learned to handle difficulties, such as getting out of bed in the morning. A friend of Wally’s lives on his own with PD. He enjoys demonstrating how he rocks his body to get enough momentum to pull himself up and if he’s stiffer than usual how to roll off the bed and use the bed to pull himself up to a standing position. Patient groups can laugh at themselves as they talk about their day-to-day mishaps and ways to compensate.
I personally don’t find venting in a group helpful. To me, dealing with the disease depends on acceptance. I’m looking for solutions, not concentrating on the frustration. If I describe something that has happened, it is to give information that will lead to a helpful suggestion to change my way of dealing with the situation. It can be from communication to physical assistance.
For instance, if you don’t know how to brace your back properly when you try to lift someone in a seat or into a more comfortable position in the bed, you can wrench muscles and hurt yourself so you can’t do it any more. By not watching how you word something, you can destroy the patient’s self-esteem, and that can lead to unpleasant power struggles between you.
Mixed groups are also beneficial because some other person with PD who is more of a communicator might explain something your partner can’t to help you learn more about what their needs are and what would be a more effective way for you both to deal with a particular problem.
I am hoping that as we carry on with this journal, you will present questions, share ideas or offer helpful tips that have worked for you. Why not start with today’s post? How did you react when you first heard the Parkinson’s diagnosis? What did you do? What was your first or worst fear?
Basic Tips for Caregivers
Caregivers’ Home Companion–worthwhile reading
Slowing the progression of Parkinson’s disease