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robinjenkins70 (@robinjenkins70)

Brain cancer: Oligodendroglioma

Brain Tumor | Last Active: Nov 12, 2020 | Replies (34)

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@colleenyoung

Welcome to Connect, @IndianaScott. Indeed there is a lot of talk about patient-centered care. Great to hear that your wife got it at Mayo. What was your experience as a caregiver? So often, the attention is focused on the patient and the caregiver is left on the sidelines. Were you cared for as the caregiver?

PS: We would love for you to join this discussion about hospice and palliative care too https://connect.mayoclinic.org/discussion/palliative-care-and-hospice-care/

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Replies to "Welcome to Connect, @IndianaScott. Indeed there is a lot of talk about patient-centered care. Great to..."

Hello @colleenyoung Thank you for the invite to the discussion on hospice and palliative care. I will check it out. Unfortunately I basically existed for 14 years as a caregiver without anyone truly giving a good goddamn. My GP talked a fair game, but then would never follow through for half the time and the other half thought I was just ‘seeking sympathy’ when I explained the life of a fulltime caregiver. If I had a dime for every time someone said ‘remember, take care of yourself’ I’d be a rich man. However, the only reason it was ever said was to placate the person saying it. Care for the caregivers, when they are unpaid, fulltime spouse/family member is a myth. I believe this is especially true with brain cancer patients as many, many folks simply shy away from anyone who is not mentally ‘normal’. Sorry….but you asked…. it was a brutal 14 year journey for my wife and for our children and for me.

Throughout my caregiving for my wife I constantly called to mind the quote by Dr. Martin Luther King. I know he was talking about something totally different, but it works for caregivers too…”We will not remember the words of our enemies, but rather the silence of our friends.”

@IndianaScott thank you for your honesty. I am not sorry I asked as I think this exposes an experience is unfortunately a common one. It is so important to “take care of yourself” when caring for someone else, but I have not yet seen a caregiver be able to do that. It seems to be an all or nothing proposition. How can one give any less?

Did you find that once your wife entered hospice care that some of the care was directed towards you? A friend of mine said that when his wife entered hospice, he was finally able to be her husband more than her caregiver.

To be honest, not really much. It was part of the spiel when we enrolled and there were certain aspects that obviously helped. Having her medications delivered, her MD visit her rather than vice-versa, nursing visits, but until someone comes up with a model that includes some actual medical care provision for full time, unpaid, family member caregivers as part of hospice my opinion is it won’t truly change.

My wife’s journey may have been a unique one. She was very isolated by her disease, as was I. Far too much abandonment during the course of her disease fight, Many old friends forsaking her. Same with family. Too many truly terrible, unethical, abusive, and in one case criminal caregivers to count. Local GPs who were out of their league with her disease, but unable to admit or compensate for that fact. Consequently she relied on my presence and her continued connection with her Mayo doctor to provide her any calm and refuge during her fight.

While not perfected yet, hospice was a godsend and provided her the one thing she wanted, which was to fight her battle in her home and not an institution.

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