My mother is taking my father's diagnosis of Parkinson's Disease worse than he is. What would be the best counseling situation for her?

MissDeb,

I totally empathize with your situation and that of your parents. My mother has fast-progressing, advanced Parkinson's Disease (diagnosed only three years ago), and my father is her primary caregiver. I visit regularly and see what PD is not only doing to my mother but also my father. The following are some of my recommendations in addition to those that Carol provided to you above:

* Encourage your mother to attend a local PD support group, which can be found via the web site of the National Parkinson's Foundation at http://www.parkinson.org/Page.aspx?pid=237 or by doing a Google search. Most meet monthly for a couple of hours and consist of a presentation and Q&A on PD-related topics, followed by meet-and-greets to mingle with other people with PD as well as caregivers, etc. My father and I have found the few that each of us has attended so far (in different cities) to be very helpful.

* Ask other family members and/or parental friends to visit and spend time with your father so that your mother has some much-needed time to herself, whether she needs that time to take a long shower, a walk, meet with a friend(s) for lunch, run errands, etc.

* Contact an in-home health care service provider or hire a nurse's aid/helper privately (each will cost ca. $10 - 20 per hour). Services provided vary and can usually be negotiated, depending on one's needs (e.g., help with showering, making the bed, making lunch, reading outloud, playing cards, taking the person with PD to a doctor's appointment, etc). By word of mouth, too, you can receive referrals, as we just did the other day through a friend of my parents whose neighbor has PD and who has a "sitter" come to the house every day for one to two hours to help out with some of the activities I've described above.

I have found that the biggest hurdle is to convince one's caregiver parent (i.e., your mother / my father) to accept outside help, be it for themselves or for their spouse with PD. My father has been doing it all alone except for those days when I am visiting. At some point, it just becomes too much for the caregiving spouse, physically, mentally, and emotionally. When they finally accept that they can't do it alone anymore, it's good to then have various options to discuss with your parents and to determine what sort of help they need from a practical perspective and, also, with what they personally feel comfortable.

I hope my input gives you something to work with and wish you and your parents all the best with finding the support to help your mother -- and perhaps you, too -- on this journey. Keep in mind that, at some point, your mother, like my father, can't do it alone anymore and that we, as their adult children, need to help the caregiving parent, too, so they don't burn out. If the caregiver(s) burn out, we're no good to the ill parent who depends so very much on us. It's in their interest and ours that we stay physically and emotionally healthy, and such health requires outside help of some sort at some point in time. There is no shame in admitting the need for assistance. Best wishes to you and your family!

You are right to recognize that she needs support and counseling. She's used to her husband being healthy and now she's looking at him having this awful disease. She should learn all she can about Parkinson's, online www.pdf.org is good and so is Mayo clinic's site. She may want to consider the Well Spouse Association at www.wellspouse.org and she could call the Alzheimer's organization, if there isn't a Parkinson's one in town, to see if there is a support group.

Some one on one counseling with any good therapist may help her through it, too. She shouldn't feel this is a weakness. They are looking at a long battle. Good luck.
Carol