Home Care for Brain Tumor Patients

Posted by ttibsen @ttibsen, Jul 10, 2022

This is a bit off topic perhaps but do bear with me. My daughter has glioblastoma and at this point she is no longer getting any treatment but is under hospice care. The glioblastoma has resulted in her being partially disabled with respect to movement and she has lost the ability to talk. We do not need regularly scheduled care at this point in time but it would be nice to be able to call on someone on an as needed basis for a specified interval. All the agencies want a minimum commitment of 4 hours / day, 5 days / week. This is way more than we need at the present time so that has me wondering - there must be a lot of other patients in the same category as my daughter - needing a bit of help on an occasional basis to provide relief for us - the primary caregivers. Does anyone out there know who could provide this type of occasional on-call service? We live in the San Francisco area - specifically - Marin County.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Lanni Solochek | @lannisolochek | Jul 12, 2022

Hi @ttibsen - this sounds like a challenging situation for your family, and I'm sorry to hear you're going through it. Have you been able to speak with anyone at the hospital your daughter received care at about finding occasional home care?

@IndianaScott, @becsbuddy and @gingerw - do you have any advice or resources that you could share on finding home care assistance?

I'd also like to invite you to join our Caregivers group for additional support as you continue to move through this journey: https://connect.mayoclinic.org/group/caregivers/

suez5 | @suez5 | Jul 13, 2022

Our Hospice unit offers offers hourly increments

ttibsen | @ttibsen | Jul 13, 2022

Thanks for the reply Lanni - my daughter is no longer connected to the hospital where she received 5 years of cancer treatment - for the simple reason that she's no longer being treated for the cancer - rather, she's been transferred to a hospice team (nurse, social worker, home aid worker), the latter visits on a regular schedule once a week to help with bathing. So while that is great and is appreciated, it doesn't fulfill the need of having someone in on an occasional as-needed basis. Thanks also for the lead on joining the Caregivers group - that is a more appropriate forum for us than this one.
Thanks for the reply Suez5 - could you elaborate a bit on your reply - where is your Hospice unit and what are the terms of care that is being offered?

Ginger, Volunteer Mentor | @gingerw | Jul 17, 2022

@ttibsen Check with your hospice people. They may have leads for respite care as needed. If you are looking for someone to "be there" while you take a break, or get to the store or appointments of your own, are there neighbors or friends who know you and your daughter, who would be willing to come in and oversee things for a while?

When I lived in southern California, there was an order of Catholic nuns, called Sisters Servants of Mary. They are a nursing order, and offered respite/overnight care as a service. You may have a source there. Also, check with your county's Area Agency on Aging, for respite care resources.

Good luck,
Ginger