PLANNING FOR THE WHAT IFS: NAVIGATING FUTURE CARE NEEDS AND LIVING TRANSITIONS

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Planning for the What Ifs: Navigating future needs

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Amy M. Chesire, LCSW-R, MSG

Movement Disorders Division, University of Rochester

Parkinson’s Foundation Center of Excellence

Mom and Dad

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This PhotoThis Photo by Unknown Author is licensed under CC BY-SA

It just sucks!

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Yet you are not alone on this path

GUESSING THE PROGRESSION: HOEHN AND YAHR SCALE�1967 DRS MARGARET HOEHN AND MELVIN YAHR

Stage I-symptoms involve one side of the body

Stage 2-symptoms involve both sides of the body, or the midline (symptoms affect structures in the middle of the body, such as speech abnormalities

Stage 3-Symptoms involve both sides of the body, with impairment of balance

Stage 4-symptoms have advanced to the point that although you can stand and walk without the help of another, you have significant disability and generally need at least some help to perform ADL’s

Stage 5-the person cannot stand or walk without the help of another person

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�FOCUSES SOLELY ON MOTOR SYMPTOMS��-NON MOTOR OFTEN CONTRIBUTE MORE TO THE LEVEL OF DISABILITY���THERE IS NO “TIME LINE” FOR HOW A PERSON PROGRESSES THROUGH THESE STAGES���-MANY PEOPLE WILL STAY AT STAGE 2 FOR A VERY LONG TIME, PERHAPS DECADES OR NEVER PROGRESS BEYOND STAGE 3

Limitations to this clinical rating scale

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“REAL WORLD STAGING/PHASES”�

The early Journey

The messy middle

The closing stage

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�The early journey ��Stages 1 and 2�

• What to do during these stages?

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• Build your knowledge base

Find or create support in your community

Get on the same page

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What maybe going on?

Getting diagnosed with PD

Coping with mild motor symptoms and non motor

Anxiety and trouble sleeping

Identity and role shifts

Grieving!

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The messy middle�stage 3

• What to do during this stage?
• Broaden both the PwPD and their care partners circle of support
• Environmental adaptions
• Simplify Tasks and Simplify More
• Accept and get help for motor fluctuations and dyskinesias
• Become really good at asking for help
• Nighttime sleep is critical

What maybe going on?

Symptoms advancing and daily activities can become harder

Motor changes especially balance and falls can become challenging

Using an assistive device may become helpful and needed

Help with more activities of daily living

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The Closing Act� Stage 5

• What to do during this stage?
• Try to stick to a regular routine
• Keep talking with your PwPD
• Consider neuro palliative support
• Focus on what strengths remain
• Keeping control of what you can while grieving the losses

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What maybe going on?

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No longer able to be physically independent

Thinking and memory changes often are occurring

Reemergence of depression and or anxiety

Everything just takes longer to do

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Planning for the uncertain future with PD

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All transitions start with a ending

Some practical steps to help plan for the future

• Instead of focusing on your stage of disease or progression, “flip it”
• -What can I do to improve my quality of life?
• I am bullish on family meetings
• -Early and often
• What is good for the your heart is good for your brain
• -rely on the “Trifecta”
• Consider home modifications or moving out of the family home to a more “user friendly” aging in place environment
• -It’s never too early
• IF planning to stay home start THINKING about home care

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Home health aides-”not for the faint of heart”

• How to pay for it?
• “Independent wealth”, long term care insurance, Medicaid
• How do I find a home care aide?
• Rely first on your own circle, and if you have Medicaid then a consumer directed program is an option. In Monroe county contact Lifespan/Eldersource to find a reputable home care agency. Remember you can’t rely on Medicare for most on going home care.
• What about if my PwPD doesn’t want a aide?
• Start earlier (if you can) with a companion for socialization only
• Emphasize this is as much for you (their care partner) as extra help will keep you going and help the PwPD remain more active and engaged

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Home is what catches you when you fall and we all fall

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Options �If you do have to move out of your home

• Independent living apartments/communities
• No longer want to live alone but still care tend to their ADL’s
• Assisted Living
• Becomes a option when a PwPD needs more help with ADL’s. Meals are provided and medications are administered
• Skilled nursing facility
• Provides 24 hour skilled nursing care for those who are dependent in most ADL’s

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���Some key takeaways related to housing transitions�

• What is most important to you?
• The building or size of a place maybe less important than the “culture” of those that work and live there
• Start early with going on tours and talking with others
• Average length of stay at assisted living is 2.5 years and average cost is $3,000-$9,000 a month depending on location.
• Skilled nursing is much more costly, about $15,000 a month
• Medicare does not pay towards assisted living and has very limited acute coverage at the skilled nursing level. Medicaid is the primary payor or becomes the primary payor for most individuals in skilled nursing

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Guiding Principles to help with the road ahead for families managing with PD

• Get control of what you can and truly let go of the rest
• You can’t make your loved one with PD do anything they don’t want too
• There is no right or wrong way to do any of this, “strive” for excellence and leave perfection to God
• For care partners find outlets to get “time off from PD” your PwPD doesn’t have this option
• Believe in your own resilience and that of your PwPD
• How have you managed prior life storms?
• Focus on your family strengths, what is working here?
• When in doubt error on the side of empathy
• Grief is ever present
• You can’t always be right be you can always be KIND (to yourself and others family members…)

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ANY QUESTIONS OR COMMENTS ARE APPRECIATED!

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YOU CAN REACH ME AT

Amy_Chesire@urmc.rochester.edu

585 341-7519

THE WORLD BREAKS EVERYONE AND AFTERWARD

MANY ARE STRONG AT THE BROKEN PLACES