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Planning for the end of your loved one’s life is never easy. It is a topic many of us would rather avoid. However, having these conversations early, especially when your loved one is still able to express their wishes, is one of the most important and compassionate steps you can take. Knowing what they want can bring clarity and peace for both you and them when the time comes.
Legal Documents
Legal Documents
Once your loved one is diagnosed, it is very important to get all legal and personal end of life paperwork completed. This legal paperwork may include, but is not limited to:
A Will
A Living Will with Advanced Directives
Power of Attorney
Medical Proxy (If different from Power of Attorney)
Once the paperwork is complete, make multiple copies and store one copy in a binder that is readily accessible.
Technology
Technology
We live in an age where a large part of our life is digital. Speak to your loved one about their digital footprint. Ask them if they would like to share passwords with you and what their intentions are for their online footprint after their death.
If your loved one has an iPhone, he or she can designate a legacy contact who will be able to access data such as: photos, messages, notes, files, and device backups. Instructions to do this can be found HERE.
Brain donation can feel like an intimidating and emotional topic. No one wants to think about the end of a loved one's life and the decision to donate your loved one’s brain to science is a deeply personal one.
The decision to donate your loved one's brain can be made at anytime after diagnosis, but it is notably easier to make the decision with your loved one and the rest of the family before the end-stage of the disease. The decision to donate your loved one’s brain can be made months to years in advance.
With PSP, Brain Donation is a partnership between CurePSP and the Mayo Clinic.
In return for donating your loved one's brain to science, the next of kin will receive a comprehensive report that outlines the confirmed pathological diagnosis. This can bring closure to families and provide future generations with information as PSP is misdiagnosed about 30% of the time.
There are some costs and planning associated with brain donation. On average, the cost to the family is somewhere between $500 to $2,000 dollars. There is potential for CurePSP to provide up to a $1,000 reimbursement for any cost incurred.
The family is responsible for finding a qualified individual to procure the brain tissue, but the Mayo Clinic provides information on providers that they have used before local to you once the application is submitted.
Further information and the application can be found HERE.
A Caregiver's Personal Experience
A Caregiver's Personal Experience
My mom’s health declined rapidly over just a few months, which is atypical for most PSP patients. We met with a palliative care doctor, and to our shock, they recommended that my mom begin hospice care based on how quickly her condition was progressing.
During the hospice intake, I was asked several questions about my mom’s end-of-life wishes. Thankfully, when she was first diagnosed, my parents took immediate steps to update their wills. My mom worked with her lawyer to clearly document her end-of-life instructions.
One of the hardest moments for me was signing the DNR form. But seeing a document—bearing her signature—stating that a DNR was her choice given the circumstances brought me a sense of peace. It was her decision, and that gave me comfort.
While researching for this guide, I learned about the brain donation program through CurePSP and the Mayo Clinic. I brought the information to my family, and we made the decision to donate my mom’s brain to science when the time comes. The paperwork was simple, and everything is now in place for the donation.
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