Wow, how will I deal with a chronic neurological illness? You are going to experience a myriad of feelings and reactions to this gut wrenching words, “You have Parkinson’s Disease” and this is a diagnosis that is not going away. The stark reality of Parkinson’s is the myriad of health conditions as it presents different and challenging adjustments for you as a caregiver, your spouse- the patient, family members and friends. My life just got turned upside down and what am I going to do?

The word that best comes to mind is “Overwhelm” with feelings of emotional numbness. You are probably a little disorientation, and fragmentation at first. These emotions will probably be recurring and part of life as you, the individual with Parkinson’s and family travel though this journey. Not only do you now have to deal with this diagnosis but also the reactions from family and friends. The important thing to remember is the reactions and emotions of the person who has Parkinson’s.

The person with Parkinson’s will develop a unique personality as will the spouse/care-partner which is reasonable human response to a situation which has now become part of your life. These are some responses to the Parkinson’s partner of being overprotective-no one can do it better than me syndrome. Totally denial of the situation an ignoring the progression of the disease and explaining or making excused for the obvious symptoms and physical changes caused by the disease. The dynamites of the relationships with family and friends could change. What once was independence could now become interdependence for both the spouse care/partner and the PWP (Person with Parkinson’s).

This is something the female care/partner needs to be aware of and not surprise with this view by society which expects the wife to assume this role without fanfare. When the husband or male is the care/partner society seems to give great accolades giving recognition, support and affirmation to the husband as care/partner. This is tough duty for either the male or female care/partner each with unique demands, expectations, needs and rewards.

As the stages of PD progresses the degree of stress increases straining relationships, emotions, health and attitude on the primary care/partner, the person with PD, family and friends. In the early stages, stages 1, 2, 3 of the PD these symptoms and displays of stress is usually somewhat low. As the symptoms of PD increase bilaterally the incidents of stress related problems rise.

As the disease progresses to the later stages of disability the stress and demands become much greater on the care/partner. These are not limited to economic issues, lack of resources, feelings of being manipulated and mismatched expectations. During this progress to the later stages of PD the daily average caregiving has probably double in the mid stages and more than likely will triple in the advance stages. These results in a decline of care/partner quality of life, depression a feeling of desperation as the ability to control has diminished and the only thing predicable is there is no predictability.

Let’s begin talking about Care Giving and the stages of Parkinson’s.

Stages of Care Giving

Being Drafted – Stage 1

Who are you? You have a growing concern that within the next 12 to 18 months, your PD care recipient will need more and more of your assistance and time. You have become concerned that because of age, medical condition, and current living situation; more help will soon be needed. At this point life seems to be about where it was at pre-diagnosis, However the realization is that as an immediate crisis may not face you now, one is on the on the horizon, but when? Rather than closing your eyes to avoid seeing that horizon, you can take some pro-active steps now that will make future caregiving days easier.

What is my prep: You expect to become a caregiver: this is your time to prepare. You should research options, gather information, and provide the opportunity for your care recipient to share his or her feelings and values.

This is very important, listen, listen, and listen!!!!! This is also your time to concentrate on taking care of yourself—keeping up with family and friends, enjoying your hobbies, pursuing your career goals, perhaps taking trips you’ve always dreamed of.

Training action for the Draft

• Consult with a good lawyer about eldercare issues. Begin putting together your financial profile. Monthly income from pensions and social security, and learn about bank accounts, investments, etc.
• Investigate community healthcare options. Will the person quality for home health care services? What housing options are available? Can the current living environment be modified to accommodate future needs, or must you look for assisted living or retirement communities?
• Lean more about the medical conditions of your loved one. Including mediations and other treatments required. Get acquainted with the physicians and others on the healthcare team with whom you will be working closely in the future.
• Start a personal journal. Chronicle your feelings, concern, and actions. You may be surprised at your feelings of loss. Your preparation for the future allows you to see what your care recipient-and you-might lose. You both will experience changes in your relationship, your schedules, and your degree of freedom. Writing down your thoughts about potential losses can stimulate the creative thought process necessary to preserve the freedom and quality of the relationship through minor adjustments and changes.