Caregiving tips from PSP caregiver

Online friend Jim posted these suggestions recently about caring for his wife.
He was responding to a family dealing with a new diagnosis and wanted to
offer suggestions on how to cope with changes.  Jim’s wife has
progressive supranuclear palsy (PSP).  These tips apply to all the disorders
in our group.

Posted by Jim
February 13, 2012
Posted to PSPinformation

It also took years for me to get a PSP diagnosis for my wife.

Unfortunately, it’s a good-news/bad-news situation. Good that you can stop

searching out new doctors to get a correct diagnosis, but bad news in that

there is no treatment for PSP. When a neuro finally said he knew what my

wife had, he looked very sad. He said, “She has PSP; I’m sorry”. It

was only later that I figured out why the ‘I’m sorry’.

My wife fell several times with her walker. We finally stopped that and

went to a wheelchair to keep her safe. She couldn’t use her arms, so her

travel is restricted to me pushing her around. I also have an inexpensive

shower/toilet chair which we use in a roll-in shower as my wife is no longer

strong enough to stand in the shower while being bathed.

A helpful tool to be used when moving your mother around as her mobility

declines is a ‘lazy Susan’ type disk which she can stand on and be used to

pivot her onto the commode; into a chair; even into the seat of an

automobile.

I smeared “shoe Goo” on the bottom of the bottom disk, to prevent it from
sliding on smooth surfaces.,

Having been on this List for quite some time, I have noticed the

pattern that the disease often takes a step downward following a traumatic

event such as surgery or a bad fall.

My wife can no longer speak as she has been unable to open her mouth

for some months now. I try and use a white board to draw picture symbols

for HUNGER, THIRST, PAIN, TOILET, etc. She can also sometimes blink

for ‘Yes’. [While your family member can still speak} establish some ground
rules.

have a feeding tube inserted in the stomach, we HAVE been successful in

feeding her by squirting pureed food into her mouth in short spurts between

swallows. (I use 60 ml plastic syringes available at medical supply

stores/pharmacies).

[Members here] recommended we buy the Magic Bullet blender to puree food.

It is a lifesaver. Last night I used the syringe to feed a pureed meal of

pork chops, mashed potatoes and gravy (thinned with beef broth). We

bought the Magic Bullet at a reasonable price at Target Stores. It comes

with several jars, lids, and two grinding devices. It will puree almost

anything.

My wife’s daily feeding routine is BREAKFAST: Yoghurt and thickened

coffee. LUNCH: Chocolate, strawberry, or vanilla “boost” with ice cream

added. SUPPER: Various rich soups, stews, or mixed foods such as

chicken pot pie, roast beef and potatoes, pork chops, etc.