“Hands-on Caregiving” – notes from two lectures

Hope everyone is enjoying warm holidays with family and friends.

In November 2017, the National Caregiving Conference was held in Chicago. Many of the sessions were webcast. Brain Support Network volunteer Denise Dagan listened to many of the sessions, including a session titled “hands-on caregiving.”

There were two speakers – Penny Patnaude, who calls herself a “caregiver strategist,” and pastor Bruce Hanson, former caregiver to his wife with diabetes.

The first part of Penny’s talk is aimed at those dealing with behavioral issues in the context of dementia. But the second part of her talk is about general caregiving.

I liked Penny’s suggestions on creating a support network for the caregiver. About friends, family, fellow church members, club members, and neighborhood children, ask yourself: “Who loves reading, playing cards, watching TV, going to museums, puzzles, music, knitting, painting, etc?” Can two people (different days/times) come over 2 hours each week to spend time with your loved one while you get some respite?

Penny introduced the topic of a “caregiver contract.” This is a formal agreement among family members to compensate a family member for providing care. You can read more about this type of contract here:

Denise’s notes about the two lectures are below.


Notes by Denise Dagan, Brain Support Network Volunteer

Hands-on Caregiving with Pastor Bruce Hanson and Penny Patnaude
2017 National Caregiving Conference
November 10, 2017

Penny Patnaude – Caregiver Strategist, LLC

Behavioral Difficulties:
– Wandering can be caused by a feeling of loss, make sure your loved ones receive plenty of exercise, limit caffeine, tea, soda and excessive napping.
– Ask physician for a sedative
– Activities throughout the day
– Paint walls and doors in same color makes finding the exit difficult
– Add pleasant circumstances into the environment (music, pet, fun)

Sundowning Syndrome:
– Use bright lighting in the late afternoon and evenings
– Avoid napping, keep consistent schedules
– Ask doctor for medication (you may have to try several & may not work at all)
– Meet them where they are, don’t argue or discount their hallucination/delusion. Use therapeutic fibbing, which is altering the truth to minimize agitation. Tell them whatever it takes to calm them.
– Distract them
– Add pleasant circumstances
– Avoid agitating topics

Eating Challenges:
– Bite size portions (cut before you serve)
– Finger food
– Ensure, carnation drinks, protein shakes
– Smoothies with pulverized veg & fruits
– Hydrate often
– Large grip utensils & dinner wear (suction cups on the bottom of bowls & plates)
– Ice cream, sweets, soft items easily digestible (non diabetics)
– Salty foods (non high blood pressure)

– Older generation didn’t bathe often when they were young.
– Make the room, clothes & water warm
– Prepare ahead of taking them into the bathroom (clean towels)
– Pleasant aroma
– Talk soothingly
– Use a sitting stool with a slide seat (soap it so they slide into tub easily)
– Let them keep their undergarments on.

– Remove spoiled food
– Remove throw rugs
– Remote cords and cables to prevent tripping
– Keep pathways clear
– Get rid of clutter
– Install gas shut offs
– Use ID tools. Project Lifesavers (GPS). Sheriff’s Dept. may be able to help with this.

Negative feelings (in the caregiver):
– Overwhelmed
– Anger
– Agony
– Stress

Support Tribe:
– Identify skills of loved ones, friends, members of church, clubs and kids.
– Ask yourself, “Who loves reading, playing cards, watching TV, go to museums, puzzles, music, knitting, painting, etc.” Then, enlist those people to do those things with your care recipient.
– Ask for 2 hrs/week from at least 2 people to give yourself some respite.

Caregiver Contract Guide:
– Include the names of all people involved
– What services will be provided by each person
– When will services take place
– What are the service fees
– How often will the charges occur

Caregiver Contract Benefits:
– Can be used to spend down care receiver’s money so they qualify for medicaid.
– Provide financial relief to the caregiver
– Keeps everyone responsible.

To learn more about Caregiver Contracts:

Pastor Bruce Hanson Former caregiver of his wife who has passed away. She was an insulin dependent diabetic when they married. He’s a technical guy so he took care of her diabetes equipment. Over time her diabetes and overall health worsened dramatically. He promised never to put her in a nursing home. He turned their house into a hospital with lifts and other equipment.

Learn what your insurance company will and won’t cover and be prepared to fight to get what they should be covering.

Learn about Medicare and Medicaid. They won’t tell you what they will cover unless you know to ask for it and how.

Learn where to find equipment. This is even more difficult when you live in a rural area, like they did.

Which ambulance service can you use? Which hospital is that insurance company going to take you to? Once you are at one hospital it is nearly impossible to move to another one.

Need some way to keep careful track of all the different doctors, medications, medical history, pharmaceutical history, etc.

Keep together all the information you will need for emergency room visits, and keep it available to travel with the care recipient.

Personally, he stayed out of her personal/private care, but left that to a female caregiver. He helped with lifting and managing her overall care.

Learn how to do all in-home care necessary to prevent having to transfer her to medical facilities whenever possible because of their rural location.

The goal is to provide care in the home so the person needing care is as comfortable as possible. Be persistent and resourceful. Get involved with your state/federal legislative policy. Don’t be faint of heart. Don’t leave a hospitalized care recipient alone at any time. Be their advocate.

“If you can’t get in the front door, try the side door, the back door, the garage door, and if you can’t get into any of them, make a door.”

Sometimes, you make mistakes. You’re only human. The flip side is, if you aren’t there doing everything for them, who would be?