Though this lecture focuses on the role of caregivers in Parkinson’s Disease, the content applies to all caregivers, regardless of disorder.
The 30-minute lecture by Elaine Lanier, RN, of UCSF’s Parkinson’s Center, presents an caregiver job description, lists the stresses of caregiving, and outlines practical ways to manage that stress. Here’s a link to the lecture, given at the UCSF Parkinson’s Conference in November 2010:
Brain Support Network volunteer Denise Dagan listened to the lecture. Denise’s takeaways from Ms. Lanier’s talk included:
- Assess your situation periodically. Something that has worked for you might just not, anymore. Employ the 3 R’s:
– Recognize when you need to adjust to new circumstances.
– Request assistance from friends, family or services. It’s the best way to care for both yourself and your loved one.
- Take get-aways and mini-breaks.
– Get-aways are scheduled times for your hobbies, church, personal grooming, friends, exercise, etc. (with or without your caree).
– Mini-breaks are anything to get your mind off the responsibilities of caregiving for 20 minutes, or so. Some suggestions are, take a walk outside and a deep breath, grab some chocolate, or read. De-stress, and then go back to it.
- Letting someone else help increases your creativity and skill set. When you see how someone else is doing a task, you may wonder why you didn’t think to do it that way.
- Make a list of things to do and another list of people who can help. Match the tasks with the most appropriate person to do it (by proximity, skill set, transportation, etc.) and ask the person to do that specific task. Start with small things and ask them to do more if it goes well. Some examples are:
– The neighbor kid who just got his driver’s license would probably love to pick up your prescription or some groceries.
– People who are far away can do your taxes, make your travel arrangements, buy Xmas gifts and ship them in your name, etc.
Think outside the box a bit for your own best health.
Denise’s extensive notes are copied below.
Denise’s Notes from
“The Role of Caregivers in Parkinson’s Disease”
Presented at the UCSF Conference on Parkinson’s Disease, November 13, 2010
Speaker, Elaine Lanier, RN, MS
Caregiver Job Description: A challenging “…job that takes place in an unstructured environment without coworkers…, no formal job description or training, and supervision by a boss that is by definition… ‘out sick.’” (Fay Mikiska, the Caregiving Tool)
The Value of Family Caregivers
* Economic value of services family caregivers provide for “free” is approx. $375 billion per year. This is almost double what is spent on home care and nursing home services combined (National Alliance for Caregiving and Evercare, 2009)
* Help to MD, nurse, clinicians is significant
* Service to loved one is beyond measure in terms of love, depth of care, and concern
* Your care is the person with Parkinson’s most valuable asset
What Do PD Caregivers Do?
* Help with Activities of Daily Living (ADLs), medication management & Administration, household chores, financial management, transportation, emotional support, medical plan management
* Cope with all PD symptoms – both motor (stiffness, tremor, rigidity, freezing, etc.) and non-motor (depression, anxiety, sleep disturbance, behavior and thinking changes, etc.)
* Role is a demanding, 24-hour job 7 days per week & duties increase with advancement of disease
Stresses of PD Caregiving
* Caregivers are often ill prepared to manage the emotional & physical demands of caregiving
* Face increasing demands due to PD progression
* Have their own aging processes and physical decline
* Caregiving can place constraints on social & family life, employment and finances
Story about the speaker having to give up visiting with her mother in the nursing home during meals because visiting at that time was just too stressful for both of them. There are similar adjustments you will have to make as a Parkinson’s caregiver by being aware of circumstances as they change and being flexible. Parkinson’s affects the entire family. If you are still working as a PD caregiver, you’re juggling a lot – maybe too much. Reducing your hours or quitting will affect your finances, but our work often contributes to our self esteem. You have stress just in deciding whether to give that up, too.
Help for the PD Caregiver
* Be/get prepared
* Take care of yourself
* Get help – don’t try to do it all yourself, its too much.
* Keep good relationship/communication with the person who has Parkinson’s. Its important for both of you.
* Education: internet, PD organizations, libraries, ask questions of doctors and nurses
* Evaluate present situation: Whether you’re new to caregiving or not, assess your situation.
– Loved one’s needs.
– Home environment Rearranging furniture to prevent falls, are there stairs in your home that will eventually be problematic?
– Your health, emotional state, commitments (job, kids, parents, etc.)
– What you can and can’t do yourself (Learn how to say, “No,” so you don’t take on too much.)
– What outside support needed
– Finance issues: health insurance (is PD covered, Is there a high deductible? Can you keep your coverage?), employment, paying bills, power of attorney (Don’t wait until there are cognitive issues before doing the paperwork for this. Pick someone whom the person with PD trusts)
Have a Family Meeting
– Parkinson’s affects the whole family
– Opens communication lines
– Helps everyone understand present & future situation
– Have early in decease, but never too late
– Include the person with PD whenever possible
Take Care of Yourself
* “Your own good health is the best present you can give your loved one” (Suzanne Mintz, caregiver of MS, president, Co-founder of the National Family Caregiver Alliance) Call NFCA to find resources to help you. Resources at the end of this talk.
* Maintain mental and physical health. Make and keep medical and dental appointments.
* Keep your job whenever possible
* Join a support group for caregivers
* Get your sleep (even if PD person can’t) Move to your own room/space if your sleep partner is keeping you awake.
* Take breaks – get-a-ways and mini-breaks. Walk outside and take a deep breath, grab some chocolate, or anything to get your mind off the responsibilities of caregiving for 20 minutes to de-stress, and then go back to it.
* Make and keep your social activities (even if the person with PD can no longer join you) and spiritual activities (church, yoga, or whatever)
* Keep (or develop) sense of humor. It’s hard to have a sense of humor when you’re watching someone you love struggle and decline, but try. Ms. Lanier shared a story about writing things her mom with Alzheimer’s said. Sometimes there are funny things. Recognize them.
Get Help – Don’t do it alone
– Lessens feelings of isolation and feeling like you’re the only one shouldering this responsibility. You don’t have to be!
– Encourages independence of the person with PD. If you’re not there to do everything, sometimes they might do it without you. It may not be the way you want it done (messy, take longer, etc.) but its done!
– Gives you more confidence in your ability to caregive.
– Increases your creativity (when you see how someone else is doing something, you wonder why you didn’t think to do it that way)
– Helps you be more peaceful & effective
How to Define and Get Help
* Asking for help is a sign of strength, not weakness
* Caregiving is a Job with individual tasks
* Make a list of caregiver tasks in a typical week
* Organize that list into categories
– Caregiving needs and how people can help
– Decide what to let go and what to keep
* Start with something small and specific like,pick up medicine at drug store, buy loaf of bread. Match up what needs doing with who may be able to help and ask them to do something specific:
Make a list of tasks: pick up groceries, medication, mow the lawn, calling Kaiser about insurance issues, etc.
Make a list of the people who could help: grandson who just got his driver’s license; sister who lives at the other end of the state, has Kaiser, and great communication skills
Where to get help: Resources
* Local & Community
– Free to low cost: neighbors, friends, churches, synagogues, senior centers, adult day health, Meals on Wheels, door-to-door vans
– Fee based: In-home care (help with cooking, bathing, dressing, meal prep, etc.)
– Social Worker from health plan or hospital can connect you to these services
* Resources, State & National
– Family Caregiver Alliance, San Francisco www.caregiver.org, 415-434-3388
– National Family Caregivers Association www.nfcacares.org/index.cfm
– National Parkinson’s Foundation www.parkinson.org/caregivers.aspx
– Michael J. Fox Foundation www.michaeljfox.org (Look under “Living with Parkinson’s,” guide for the caregiver)
* Each website gives information and other websites for resources
Relationship/Communication with Person with Parkinson’s
* Can be most difficult and rewarding part of caregiving
* Roles change (e.g. adult children who must take an authoritative role with their parent)
* Research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression & better physics health.
How PD Person Can Help Caregiver
* Appreciate caregiver and tell them – thank you’s go a long way
* Be an honest communicator
– Don’t minimize the situation
– Don’t avoid communication to “spare” the caregiver. Caregivers/family want to know
Ms. Lanier shared a story about a support group. The issue came up that a person with PD worries that if they ask for help now, it won’t be there later, when I really need it. Caregivers all says they want to know what’s going on.
* Be Cooperative, be a team player
– Work with, not against caregiver
– Don’t expect things to be done exactly your way. Ms. Lanier shared a story about asking her husband to go to the grocery store. He didn’t come home with the sizes and/or brands she would have bought. He saved her at least an hour, so it was good enough.
– Get prepared with education, assess your situation as you go along, have regular family meetings
– Take care of yourself (take mini breaks, keep your medical appointments, reduce your stress)
– Get help (use the resources listed)
* Person’s with Parkinson’s
– Appreciate your caregiver(s)
– Be open and honest
– Be cooperative, you’re a team!
* To Both of You
– Work on having a positive relationship/communication with each other – for the health benefits.