Guest Caregiver Speaker at a Support Group

On 8/12 I was a guest Caregiver Adocate speaker at a local Support Group in town. It was a pleasure to have the invitation to both discuss my kids book and talk about caring for the caregiver. Before I spoke, this breakout caregiver-only group shared their experiences as wives, daughters, and friends of those with Parkinson's Disease and many had heroic stories of advocacy. But the family advocates that champion others sometimes forget themselves. When it was my turn to speak we talked about sites like FamilyCaregiverAlliance or fca.org and tips on self-care re-interpreted as required and not optional. I have lots more to say on this in my blog but want to share how positive the talk was. Many thanked me afterward. Caregivers need to be heard and their presence felt. The rewards of caring for the caregiver are often unseen but the benefits help not just the caregivers but all who rely upon them.

Also some big news about me is that I recently became an Ombudsman - an advocate for those who are living in Long-Term Care facilities and need someone to be their voice. I know how hard it can be to help someone who is vulnerable in my own family. This will be new to me to work with those in facilities who are living in skilled care and are frail, or disabled, or maybe they are just fine in their assisted living home but just frustrated with asking too many times and no results. I've received my training and my certification and will grow on the job. I also know that it will benefit me as I help caregivers for families where there is a person with a disability or a debilitating chronic illness.


Back to my talk at the caregiver group in the North Bay. While speaking to the caregiver only support group, I mentioned a metaphor about coaches and about the athletes they guide, motivate and witness. It's unfathomable that a coach would not have a group of other coaches with which to share and grow. Yet caregivers who are new to care -- from cancer of a family member, or a stroke, or even a new disability from an on-going disease -- the new "state of play" is always one involving learning about conditions those for whom you are caring. As a caregiver, you get the message that your own needs are now distinctly in the back seat -- like some naughty kids whose behaviors you put up with just until you get to the destination. But sometimes with caregiving the destinations for the ones you love that might lead to a "new normal" just don't arrive when you think they will. The anxiety is prolonged or has peaks and valleys of feelings like anxiety (things are getting hard or staying hard) or frustration (this is futile! I can't believe I have to do this!), or even guilt (why do I wish someone else where doing this - shouldn't I feel better) followed by shame (I'm embarrassed to admit I am so frustrated). The best part of being among caregivers is that EVERYONE around you feels each and every one of those emotions. And you can really own what you feel when others are just like you.

I was grateful when someone came up to me after the group I was speaking to and told me how grateful he was that I reminded caregivers they were important. Their needs need attending to, and that even if no one brings it up, a caregiver is the captain of the ship and can't allow the ship to go off course (or sink), even if the load they are carrying is safe. And there I go again with metaphors.

Speaking of metaphors, I have a great kids book that I love to plug that uses the idea of a porcupine to tackle a prickly topic. It's called, "My Grandpa Wants to Get a Porcupine." You can buy it at my publisher's site called Lulu.com or Amazon or your favorite retailer via special order.If you reach out to me directly, I can arrange an autograph. Another thing I forgot to mention about the "porcupine" book was that I plugged it at the support group and talked about the book's conception. The book's story behind the story deserves its own blog post (but here's the short version - an ad agency person asked me if Parkinson's could be an animal, what would it be -- I said, "a porcupine - because my kids won't hug their grandparents who both have Parkinsons" The book helped me talk through unconscious fears of the disabled in a way that warranted publishing).

Now back to that support group visit and a funny anecdote about a non-Porcupine rodent and how it saved the day for one caregiver. A woman at the aforementioned group said her husband who has Parkinson's Disease was at an extended family meal and it was talk of this certain rodent that made the "elephant in the room" of Parkinson's, pushed away. The woman described how the extended family meal in another state began awkwardly with all saying hello and yet the feelings of sadness and, likely, pity arose toward her husband in a way that was palpable. Even as they moved past pleasantries to the family meal, she said the feelings seemed to get in the way of conversation at the table as family members who hadn't seen her Parkinsonian husband, felt unable to converse. Yet, all of the sudden, out of the blue, one family member mentioned seeing a raccoon. She mentioned that the talk of the raccoon totally broke the ice and people broke into laughter and talk of other wild animals. The laughter and the shared humanity all came back, and fears fell away as that sense of "we are all the same" came right back. If you want to reaffirm this message and support my author-hood and read about disability awareness in a way that is helpful for adults and suitable for elementary aged kids to comprehend, follow this link and purchase it in ebook or softback: https://www.amazon.com/My-Grandpa-Wants-Get-Porcupine/dp/1483429679