Ask Dr. Ticcy: How do I support the caregiver of a person with TS?

Ask_Dr_Ticcy_Logo-238x250Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dear Dr. Ticcy,

HELP! My grandson has been diagnosed with TS complete with the Jekyll and Hyde rages, which are overwhelming for my daughter to say the least. He is 6, and tells her that he hates her and wishes she was dead. He would like to stick nails in her eyes and so on. So, tics are one thing but these rages are frightening to say the least.

I am feeling helpless to help! He is on medication including one for his ADHD. I don’t even know why I’m writing this other than as a mother and grandmother I’m feeling absolutely powerless so I can only imagine how my daughter is feeling. How can I help her?

Thanks for listening,
Concerned Mom/Grandmother

Dear Concern Grandmother & Mom,

I am very sorry to hear that you and your family are going through such a challenging time.

You mentioned that a physician diagnosed your grandson with “TS complete with “Jekyll and Hyde rages.” I assume, though I am not certain, that you are talking about the neurological storms or rage episodes. The TSFC’s recent three-part blog series on the subject is well worth reading.

Your concern for your daughter, a mom whose son says he “hates her” and “wishes she was dead,” raises an important question: Who cares for the caregivers?

This question may seem straightforward, unfortunately, the answer is not. I cannot say “there is one organization that your daughter, and other caregivers like her, can go to sign up for ‘caregiver support.’ ”

Supports and services for caregivers are many and understanding what they are and whether you qualify for them can be time-consuming.

Canada has various forms of assistance that a caregiver may qualify for, and each province has a different landscape of programs and supports as well.

As a result, the TSFC Blog will soon publish a series on caregiver support that will highlight some of the programs and supports for caregivers in each province as well as federally. Each entry in the series will provide links to the programs it discusses and a description of eligibility requirements.

Thank you for writing your message and for bringing attention to the issue of “care for caregivers.”

Dr. Ticcy

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