IV. Caregiver Checklist
Dan Heins
Caregiver to his wife who died from PSP at age 54; Atypical Parkinson support group leader in Louisville, Kentucky; board chairman of Parkinson Support Center of Kentucky
I think what would have helped me years ago would have been a caregiver checklist that lists many of the things you need to know or acquire to best take care of a loved one with PSP. I often share many of these ideas in my support group meetings. Some examples, and not in any particular order, are:
• U-Step Weighted Walker
• Soft Helmet( saved us several ER visits)
• Portable Suction Machine( saved us tons of ER visits)
• Panic Button, such as Life Alert
• Attention-getters: whistle, bellhop bell, cowbell, and wireless doorbell( wireless doorbell is my latest discovery … really great)
• Depends( they’ re more comfortable than you think)
• Hospital bed
• Hospital bedside tray or table
• Handrails in the bathroom and shower / tub
• Portable toilet with arm rails— one that can sit over a regular toilet( this prevents a broken toilet and toilet seat)
• Thick-It Powder
• Thick-It or Resource“ ready to drink” containers of water, juice, tea
• Living Will
• Medical Power of Attorney
• Discuss the PEG decision early.
• Discuss the hospice decision early.
• Discuss funeral plans early.
• Record lots of video while your loved one can still speak.
• When to see a urologist about catheters or Foley catheters
• Home Urinalysis Test Kit( It’ s cheaper and easier to do it yourself. Only take any positive results to doctor.)
• Special hearing aids that work with a companion microphone( mine cost over $ 4,500) or Mr. Microphone( a cheaper option)
• Remove clutter and eliminate all throw rugs / area rugs( easier said than done).
• Get a transport wheelchair.
• When do I need to have a Visiting Nurse come to the home? What duties should be expected of them?
• Oximeter( inexpensive and so important)
• Stethoscope( still learning to listen to sounds)
• Blood Pressure Monitor
• What can you expect insurance to cover, and what does it not typically cover? Don’ t be afraid to appeal decisions and to insist that insurers use common sense.
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