This month the Stanford Parkinson’s Community Outreach Program hosted a lunch for former PD caregivers who attended our support groups. Those in attendance had lost their loved one from one week to four years ago.
We asked them to share their thoughts on a few questions to benefit current PD caregivers. Here are the questions we asked our lunch attendees and their wise advice:
1) Share three things you learned as a PD caregiver.
Work your network! Make a list of friends and family. Send mass emails to ask if anyone can help with XYZ or if anyone receiving your email knows someone who can help with XYZ. Everyone can help in some way. One example was teenage grandchildren taking grandpa for a walk. It strengthened the bond between them and gave other family members a break from caregiving.
Don’t feel guilty if anything goes wrong. Give yourself credit for doing your best. You might have done things differently, but it might not necessarily have been better.
Feel your feelings and listen closely to your body. It’s hard to do when you’re caring for someone else. You may need to remind yourself every day to take care of yourself – exercise, sleep, and eat well.
Recognize when the level of care you’re providing is not sustainable. Get help in the home or place your loved one at a care facility.
You can’t do everything by yourself. Don’t try! Take advantage of whatever resources are available.
When you place a loved one at a care facility, there is an entire staff doing all the tasks you were taking on alone! If you remind yourself this every day, it may help with guilt and the adjustment of having your loved one in a care facility.
It is very difficult to care for someone with PD AND dementia, but you are not alone! Learn how to deal with hallucinations.
Be proactive with the medical profession.
Be present while caregiving.
You need patience.
Learn to be compassionate.
Remind yourself that the person with PD is doing their best and not trying to make your life harder.
Don’t overestimate the physical ability of a person with PD.
Understand PD and know what kind of decline to expect..
Especially if you own your home, you need trustworthy service providers (plumber, etc.).
2) What was the best support or advice you received?
Your partner can choose their own way of living.
Get your legal and financial paperwork in order. That includes learning early on (first 5 years after diagnosis) how to care for your home, car, taxes, etc. and make decisions independently of your spouse, ensuring you know where to find the passwords for every account, and having at least one credit card in your name.
Read webinar notes sent to the PD Caregivers email list to learn about PD and PD caregiving.
Editor’s note: Some webinar notes are posted to the Stanford PD Community Blog: parkinsonsblog.stanford.edu/category/webinars.
Subscribe to the PD Caregivers email list here: med.stanford.edu/parkinsons/join-mailing-lists.html.
Attend a support group and use that forum to vent your anger, so you don’t yell at the person with PD.
Take care of yourself so you can be there for your loved one with PD.
Get respite. Find time to care for yourself and recharge your energy.
Adult children gave a push to hire in-home help.
Keep your sense of humor and laugh often!
Express gratitude.
Enroll your loved one with PD with palliative care and hospice as soon as possible.
3) What do you hope we tell every PD caregiver?
Take care of yourself.
Express your feelings to a trusted support person, whether that’s a close friend by phone or video chat, or a PD caregiver support group. That person should be a good listener who will not judge you, give you unsolicited advice, or launch into their own story.
Stay in the present.
Live in constructive denial, with the emphasis on ‘live.’
Pick your battles. Ask yourself, “How important is this, really?”
Create happy memories in the present. Figure out what the person with PD can still do, and do it!
Exercise – both the person with PD and caregiver!
Get informed about PD and PD caregiving.
Plan for the end.
Caregivers should know they can tell a loved one with PD at end-of-life that the caregiver will be okay if it is time for the PwP to die.
For more advice from a former PD caregiver mark your calendar NOW
Thursday, September 26 at 2pm Stanford will host a virtual conversation with Barbara Sheklin Davis, author of “Advice from a Parkinson’s Wife: 20 Lessons Learned the Hard Way” (2019). Barbara wrote this book after more than two decades of caring for her husband with Parkinson’s. Despite the title, this book will be of interest to all caregivers.
No need to register. At the time of the event, use this link to join the webinar.
Or join by phone. Dial: +1 650 724 9799 or +1 833 302 1536
Meeting ID: 914 5634 9122
Password: 8677419