It’s interesting to me that ever since my husband was diagnosed with PD, we are on the same journey yet we are not. We share much due to his disease but our responses to the changes it has brought to our lives are obviously different. He faces the actual loss of physical and mental capacity, I face the loss of my partner in life. He struggles daily with survival, I struggle to pick up the pieces left behind. His battles are direct while mine are more behind the scenes, yet all are just as important in managing our daily routines.

It is important that I recognize these basic differences in our needs. Support in his journey will come from the traditional Parkinson’s organizations but for me it can also come from caregiving networks. I have much in common with other Caring Partners struggling to make it through their days whatever their loved one’s diagnosis might be. While the actual work we do may be different, the emotional toll of caring for a loved one with a chronic or terminal illness is going to be universal. We all face frustration, exhaustion, grief, and loss and can be a valuable resource for each other.

While I am active in PD support groups, I also seek other options. It is vital that I remember PD supports are there because of my husband and his diagnosis, Caregiver supports are there just for me. There are a couple of on-line resources that I use regularly. The help available on these websites is more relevant for what I need, rather than a response to what is happening with him. It is much appreciated advice for me because of what I am facing and not as an extension of his diagnosis.

On-line resources I find helpful as a CarePartner include Family Caregiver Alliance; Caregiver Action Network; even AARP.