Open & Close Cereal/Bread One-handed

Opening and refolding the plastic bag inside a cereal box is a two-handed task.  I would have to use my teeth and my sound hand.  Instead I take the bag out off the box, cut one side open (see arrow), and pour the cereal into a container.  Each morning my sound hand flips open the lid and pours.

To open a loaf of bread, I pull off the plastic tag and use the pointy end of a bottle opener to rip open the inner plastic liner.  

To close, I fold the open end of the bag under the loaf (see arrow) and slide the loaf inside a bread container made by Rubbermaid.  When I turn the container upright, the weight of the bread keeps the folded end shut.  The next day my thumb flips the lid off, I put the container on its side, and slide the bread out.  homeafterstroke.blogspot.com

Are You Disabled?

A physical deficit may be permanent but feeling disabled can change depending on the expectations and resources of a specific environment (1).  Let me give you an example.  I heard people in the hospital say they cannot wait to eat a home-cooked meal.  But there is a catch.  At home people may be dismayed if "pop-pop" shows up for a meal when he needs a shower and a shave, is dressed in his pajamas, and has bed head.  I do not think dietary staff who deliver our meals expect patients to look good.  Resources can also be different in different situations.      In the hospital, aides help people with A.M. care and the dietary department cooks.  At home, the person who cooks and assists someone with an impairment may be the same person.  You may feel more disabled at home because your family has different expectations and resources than the hospital.  

Whether you are disabled also depends an whether you think independence should always be the goal.  Phalen says no one is truly independent (1).  Many people do not cut their hair, change the oil in their car, or prepare their tax returns.  However, able-bodied people help each other by dividing up a list of tasks.  Stroke survivors who have only one good hand may not be able to finish what they started unless they get help for specific steps during a task.  Repeatedly waiting for help during a task can get on your nerves.  My thumb leans on the independence side of the scale.  homeafterstroke.blogspot.com

1. Phalen SK. Constructions of disability: A call for critical reflexivity in occupational therapy. Canadian Journal of Occupational Therapy. 2011;78, 164-172. doi:10.2182/cjot.2011.1.78.3.4.

Practical Guide to Giving Assistance

Activities of daily living (ADLs) evaluations divide assistance into mimimal, moderate, and maximal.  The Functional Independence Measure defines these levels by the percentage of a task a client can do independently like 25 - 49%.  OTs can guesstimate these percentages because they see hundreds of clients which helps them judge a client's performance.  Caregivers need a more practical way to know how much to help.

Minimal assistance = you can multitask because your loved one can do a lot, but stay near by.      Moderate assistance = sit or stand in front of loved one because they will need repeated help.  Maximum assistance = look for ways for your loved one to help you ( e.g. have them put their arm around you to help you scoot them to the front edge of the wheelchair before you stand them up).

OTs have an incentive to keep their hands in their lap - every time they help it lowers a client's ADL score.  Caregivers have different incentives for waiting to see how much their loved one can do.  Caregivers need energy to do chores their loved one usually does, like cleaning toilets and mowing the lawn.  Caregivers also need energy to make doctor and therapy appointments, arrange transportation, deal with health insurance bills, pick up medications, set up home exercises, and deal with a loved one's difficult emotions. 

When therapists say a client needs assistance, caregivers need to think about asking for help before they get into trouble.  Nurses gave caregivers a preparedness questionnaire before discharge from rehab and asked them what they were thinking as they answered each question (1).  A dialogue is much better than a handout.  homeafterstroke.blogspot.com

1. Carmicia M, Lutz B, Harvath T, Joseph J.  Using the Preparedness Assessment for the Transition Home After Stroke Instrument to identify stroke caregiver concerns predischarge: Uncertainty, anticipation, and cues to action.  Rehabilil Nurs.  2021;Jan-Feb 46(1);33-42.  

Reheating Food Safely

Warning: Using a microwave requires safety awareness

The problem with family or friends leaving a dish for a stroke survivor to heat up in the microwave is that the thumb knocks the lid off when you pick up a dish one-handed.  Heating uncovered food in the microwave makes a mess. 

When I take a hot dish out of the microwave my sound hand is protected by a hot mitt and my hot mitt is protected by plastic wrap on the contaner.  You might wonder why a stroke survivor would use plastic wrap when it gives people with two good hands a run for their money.  Before I started using plastic wrap I had to wash my hot mitts repeatedly.  The mitt would get dirty when I slid my thumb into the dish so I could get a firm grip on the edge.

Go on-line to see the  "food wrap box."  It cuts the plastic wrap in one blow when I shut the lid.  Stretching the wrap over the dish is easy too.  I place the box next to the dish.  As I pull the plastic wrap out, the weight of the dish holds the food wrap box still.

Using plastic wrap also means I do not need a food strainer.
I use a hot mitt on my sound hand to hold he dish over the sink to let the water drain out.  The arrow is pointing at a flap of plastic wrap that is open.  I did not do this.  The water did it for me.
I lose a couple of pieces of small food now and then, but keeping my sound hand safe while handling hot dishes is priceless.
homeafterstroke.blogspot.com

How I Feel Less Guilty About Asking For Help

I live alone so I am both a stroke survivor and a caregiver.   I use 7 strategies to keep my volunteers from burning out (18 years) and feel less guilty about asking for help.

1. Prioritize.  I cut down the number of requests by identifying what I need versus what I want.  I need someone to get on a ladder to change the batteries in my smoke detectors.

2. Build trust.  People do not need special training to know they are being taken advantage of.  When I ask for help I let my volunteers know I do everything I can before I contact them.  People feel good about helping when they know they are really needed.  This strategy builds trust.

3. My husband would groan rule.  I cannot ask people to do things that would make a husband groan.  I cannot ask someone to buy a live tree, transport it, drag it into my house, use an ax to trim the base so the tree fits in the stand, and tighten and loosen the tree stand to reposition the tree until it is straight.  So I bought an artificial tree.  John takes it out of the box and snaps the four pieces together.

4. Let them choose WHAT to volunteer for.  I e-mail a request and let people choose things they want to do.  Peggy who loves to sews repaired the sleeve on my raincoat.  Barbara who is a computer technician volunteered to help me set up the router for my internet service.  Letting people choose what to do means I do not risk rejection because I have asked the wrong person.

5. Let them choose WHEN to volunteer.  After they volunteer I ask them when would be a good time for them.  Everyone has busy lives so it is less of a burden when I fit into their schedule.

6. Make a list and stick to it.  Before someone comes I make a list of the things I need done so my volunteer knows when he or she is done.  I stick to the list instead of looking around and saying "there is one more thing I need you to do."  This list also reminds me to get materials my volunteers need.  Before John comes to replace the batteries in my smoke detectors I buy 9-volt batteries.

7. 80% rule.  The 80% rule means some things can be mostly correct rather than perfect.  After my stroke I gave myself permission to not make everything perfect.  For example, the seam of my bedspread is supposed to be where the edge of the mattress is (see the black line).
It is only fair to extend the 80% rule to my volunteers.  Nobody wants to hear that they did not do it the way I used to do it.
homeafterstroke.blogspot.com

Finally - Real Help for Caregivers

As an OT, I sat through discharge meetings where caregivers were silent.  Some may have been too stunned to ask questions.  Others may have thought problems would disappear because the stroke survivor would completely recover (1).  Reality may not set in until caregivers struggle to get a family member inside his or her home.  I learned how intense demands are on caregivers after I went home alone after a stroke.  After 17 years, I know how many caregiver tasks have to be done to keep a stroke survivor out of a long-term care facility. 

I was excited when I read about a caregiver questionaire that is given before a stroke survivor is discharged from rehab (2).  Before the client goes home, staff ask caregivers what they were thinking as they answered each question.  This creates an opportunity to change what caregivers know and encourage them to ask for help before they get into trouble.  A dialogue is so much better than handouts.   homeafterstroke.blogspot.com

1.  Lutz B et al. Improving stroke caregiver readiness for transition from inpatient rehabilitation
        to home. The Gerontologist. 2016; Vol 00:No.00,1-10. doi10.1093/geront/gnw135.                    2. Camicia M, Lutz B, Harvath T, Joseph, J.  Using the Preparedness Assessment for the                    Transition Home After Stroke Instrument to identify stroke caregiver concerns predischarge:            Uncertainty, anticipation, and cues to action.  Rehabil Nurs. 2021 Jan-Feb 46(1):33-42.

Staying in My Home is Not Easy

The independent living facility I hope to go to has a heated underground garage.  Until I move, I need 5 snow strategies because I have to park my car on the street.  When snow is forecast my 1st strategy is to go grocery shopping.  When we get a dusting of snow I use my 2nd strategy.  I use a child-size shovel to push snow onto my lawn.  I sprinkle Ice Melt on my walkway and in front of my car.  The big container is heavy so I use a funnel to pour Ice Melt into a small container sitting in my bathroom sink.  My sound hand lifts the big container.  My affected forearm under the big container controls the degree of tilt.  

New Jersey often gets above freezing after a snow storm.  When the weather forecast says this will happen I use my 3rd strategy.  I wait a few days for the sun to free my snow-covered car.  However, the street has a low spot that captures water as the sun melts the snow.  I need a 4th strategy to cross this small pond.  I place a thick rubber matt over the water so I can to get to my car safely.  

When the weather forecast says New Jersey will stay below freezing after a snow storm I use my 5th strategy.  I pay two teenage boys to clean my car, walkway, and snow that the snowplow has pushed against the side of my car.  They also shovel snow in front of and behind my car so I have a clean parking space.  Old people in my neighborhood are nasty when someone takes the parking space in front of their house.  homeafterstroke.blogspot.com

Some People Invade My Personal Space

I snapped at a dear friend when she offered to retie my loose shoelace.  Even though I said I could do it, she insisted on helping.  This made me angry because every doctor I have seen since my stroke reaches down to untie my shoes during a physical exam.  They do it quickly because they know it is not appropriate for a male doctor to undress a female patient.  I do not know how old I was when I decided my clothing is a part of my personal space, but it was a long time ago.

Telling my friend I could do it as fast with one hand as she could do it with two hands was not a deterrent.  She said "I could tie your shoe at least once so you won't have to."  My strategy to handle this more gracefully next time will be to say "Can you tie a shoelace that has only one free end?"  homeafterstroke.blogspot.com

Stroke Survivors Need to Talk

Research with over 1,000 stroke survivors in the UK found that one in five choose to keep their fears to themselves (1).  Major fears included having another stroke, never getting better, and being sent to a long-term care facility.  Reasons for remaining silent included not wanting to worry others and not wanting to sound stupid.

I rarely discuss my stroke issues with family or friends for two reasons.  First, the challenges a stroke creates never ends.  I do not want to see able-bodied peoples' reaction to a litany of complaints that never end.  Second, after trying to explain a few problems to able-bodied people
I found they do not understand the emotional and physical toll a stroke creates.  In contrast, a stroke survivor recently thanked me for a presentation I gave.  I showed him a simple way to hold a toothbrush still while appying toothpaste with his sound hand.  He thanked me enthusiastically because he knew how irritating it would be to clean up sticky toothpaste when a toothbrush falls over every day until he dies.  He gets me and I get him.  Thank God reading stroke survivors blogs showed me that we can get better after rehab ends and my concerns are not stupid.  homeafterstroke.blogspot.com

1.  https://thiis.co.uk/research-reveals-the-often-silent-fears-and-concerns-putting-stroke-survivors-recoveries-at-risk/

Caregiver Disconnect

Forty caregivers of stroke survivors reported they often felt abandoned (1).  This may sound surprising unless you know therapists usually do not talk to caregivers.  Lutz found that "during rehabilitation many of these caregivers still hoped and expected that the stroke survivor would return to pre-stroke function (p. 8)."  Caregivers reported not knowing how to help when their loved one went home.  One caregiver said when her husband struggled with a task she helped by doing it for him.  This solution produces muscle weakness and mental decline which increases the caregiver's burden.

As an OT I was oblious to the stress that caregivers experience.  They have to: 1) take on their partner's chores, 2) be a therapist, and 3) be a case manager.  A wife may take out the garbage and change the batteries in smoke detectors.  A husband may clean toilets, do laundry, and cook.  When caregivers are therapists, they may help with self-care like bathing, set up home exercises, and deal with a stroke survivor's bad moods.  When caregivers are case managers, they schedule doctor and therapy appointments, arrange transportation, deal with insurance companies, and make multiple trips to the drug store to pick-up medication.  Many caregivers do this without professional psychological support or respite care.  Now I see that caregivers are angels.   homeafterstroke.blogspot.com

(1).  Lutz B et al. Improving stroke caregiver readiness for transition from inpatient rehabilitation
        to home. The Gerontologist. 2016; Vol 00:No.00,1-10. doi10.1093/geront/gnw135.

Tiny Habits

Fogg explains how to make my life easier after a stroke (1).  He says Behavior = Motivation + Ability + Prompt (MAP).  Motivation is unreliable because it comes in waves that vary from day to day, morning to evening, and even minute to minute.  Motivation also fails because it is usually attached to outcomes like saving $500.  An outcome is not a behavior I promise to do.  Finally, motivation can be highjacked by the "go big or go home" philosophy.   

A is for ability which is how much skill the task requires.  Stroke survivors and caregivers can find ways to make a task easier by reading blogs and books written by stroke survivors (see About Me page and my Blog List on the right side bar).  Although I am an OT sometimes I need help solving a problem.  However, an OT or PT evaluation never identifies all my concerns.  I start every new round of therapy by walking in the door with a list of problems I want them to solve.

P is for prompt.  Prompts like to-do lists and calendar alerts on my iphone are SO easy to ignore.  Fogg and I believe in the power of established routines to trigger a new behavior.  The tricky part of using an established behavior to prompt a new behavior is finding what Fogg calls the trailing edge of an old behavior.  For example, I kept forgetting to put drops in my eye after eating breakfast.
I did not succeed until I discovered the last thing I do after breakfast is rinse my cereal bowl.
Now I rinse the bowl and think about using eyedrops to rinse my eye after my recent cataract surgery.  "After breakfast" was too vague.   homeafterastroke.blogspot.com

1.  Fogg BJ.  Tiny Habits.  New York: Houghton Mifflin Harcourt; 2020.