Support for Caregivers
Resources to Help You Care for Your Loved Ones
Discover essential tools and information to assist you in providing the best care for your loved ones during challenging times.
Explore Our Resource Library
Caregiver Resources and Support
Downloadable PDF 📑
Moving Forward with Parkinson’s
External Support Groups
Below are helpful support groups I do not lead but would recommend:
Parkinson’s Care Partner Support Series
2nd and 4th Wednesday every month
Individuals and Families with Parkinson’s Support Series
4th Thursday of the month
All groups start at 2pm EST and last an hour.
Helpful Links
AARP
Alzheimer’s Association
Alzheimer’s Disease Education & Referral Center
Caregiver Action Network
Caregiver Self Assessment
Culture Change Network of Georgia
Dementia Minds
Lewy Body Dementia Association
Music & Memory
National Alliance for Caregiving
National Hospice and Palliative Care Organization
Helpful Links
National Institute of Health (NIH)
National Institute on Aging
POLST Form
Teepa Snow
Being Mortal
PBS Frontline Documentary – How do you talk about death with a dying loved one? Dr. Atul Gawande explores death, dying and why even doctors struggle to discuss being mortal with patients, in this Emmy-nominated documentary. (Click here)
Death over Dinner
Step-by-step instructions to host your own death over dinner party. An interactive way to talk, listen, and watch. (Click here)
Dementia Action Alliance
DAA is where people come together to connect, form friendships, exchange ideas, learn, and create a better community in which to live with dementia or mild cognitive impairment (MCI) (Click here)
Five Wishes
Create an organized document to let everyone know your wishes. (Click here)
Lorenzo's House
Lorenzo’s House empowers young people and their families walking with younger-onset dementia through an array of holistic support–shifting the narrative from isolation to connection, stigma to strength and darkness to light. (Click here)
The Conversation Project
Created by journalist, Ellen Goodman after her mother passed away to make discussions easier and more productive. (Click here)
You May be Wondering…
What is Palliative Care?
- The goal is to optimize the quality of life
- Allows individuals to continue to see doctors, therapists, etc
- Continue with normal activity
- It is an integrative support team that help provides support to individuals with a chronic and terminal illness
- The difference between hospice and palliative care is, you agree to no longer accept treatment from doctors
Myths About Hospice
Myth: Hospice is a place
Fact: Hospice is a service that can be provided wherever the person is living
Myth: Hospice means giving up
Fact: Hospice means you want to ensure your loved one is comfortable and has a quality of life. Hospice provides comfort to individuals and families with the support of doctors, nurses, CAN, social workers, chaplains, and volunteers
Myth: Going on hospice is my loved one’s death
Fact: Hospice is about providing a quality of care
Myth: My love one will become addicted to morphine
Fact: Morphine is given to help as a pain reliever, and relieves the struggle to breathe
How to Prepare for the End-of-Life
Things to Consider:
- Start having multiple conversations with your loved one about their wishes and plans.
- Who is the Power of Attorney? Is there more than one?
- Where is the advanced directive? Do they have one?
- Have funeral arrangements been made? Casket. Plot. Pall bearers.
- Some people write their obituary in advance.
- Please make sure, if you are living alone you have you insurance information, advanced directive, and medication list on the refrigerator, marked emergency. First responders know to look there.
- For all your wishes and planning it does no good, if no one can find it.
Making Memories!
Life is meant to be lived, so embrace it!
- Have a party
- Go on vacation
- Do something on your bucket list
- Have friends come visit
- Record stories and voices
- Family Reunion
- Have your loved one write letters
- Make a memory box
How to Advocate for your Loved One in Hospice Care
- Read their body language
- Notice brow furrowing
- Clenched fist or feet
- Agitation
- Thrashing around
- Fever
- Chills
- Thirst/hunger/ dry mouth
Things to Remember
- Care partnering is a team effort
- Life is meant to be lived, embrace it
- Palliative care is about providing a person-centered approach to life
- Hospice is a service that provides intense palliative services when someone has six months or less to live, and has decided to stop all treatments
- Quality v. Quantity
- Medication enhances the quality of life, it does not hasten it
- Being present is the best gift of all!
and be present
Life is meant to lived, until after the last breath…. Embrace it!
There is not a medal at the end of the journey, by having others guess
what you might have wanted,
preferred, or needed
Death is a human experience, NOT a medical event! (Life Before Death)
Take the Next Step
I hope you will benefit from this collection of my favorite resources designed to support you in your caregiving journey. From expert advice to community support, Graceful Journey ATL is here to help you every step of the way.