Being a caregiver to a loved one with Parkinsons Disease requires knowledge and skill to maximize your results. I know that caregiving can be overwhelming at times. Before you know it you can feel like you are the medical expert, the nurse, the therapist as well as the spouse or family member.
Caregivers fall into that category of being the “general expert,” regardless of the disease that they are dealing with, but with Parkinsons Disease it seems that there are some different challenges.
First of all you need to be the advocate for your loved one. You need to become aware that there are some medical professionals that understand Parkinsons, and there are many that don’t understand it. As a caregiver, you may find yourself feeling like you know more than many people that treat your loved one. That is frustrating, but that is the way it is.
Years ago, I used to think that it would be most beneficial to teach other medical professionals; therapists, nurses, and others about one of the cardinal issues with Parkinsons’ management, which is the timing of the patient’s medications. I don't think that way anymore. I think that the real power comes from teaching patients and caregivers how to manage this disease and empower them with confidence.
For those of you who have had your loved one in the hospital, assisted living facility or skilled nursing unit, and needed to get your loved one’s medication delivered on a timely basis, that is one of the most difficult things. It rarely happens.
When a person is on standard Carbidopa/Levodopa, the effect in the blood plasma peaks around two hours and starts to wear off around four hours after taking the medication. There are variations to that, depending on what formulation of the medication you are taking. But if you need your loved one to take their medication four times per day, you would obviously need to have them taken during the waking day; let’s say at 7am, 11am, 3pm and 7pm. In a hospital, it will never happen. In other types of facilities it may have a better chance of happening, but it requires constant attention…and that can be overwhelming.
My message right now is start where you are. Go into the Free Forms section of the web site and take advantage of some of the forms there. Develop a plan with goals to improve your loved one’s situation. Identify the problems you are struggling with and send me an email to This email address is being protected from spambots. You need JavaScript enabled to view it.. Let’s work on some of your problems and develop some solutions. I will be glad to focus on what you need me to talk about!
Just let me know what you need! xo Sally
