Having support does not mean compromising your independence. Learn about the different types of support and the benefits of having a strong support system.

The Stroke Journey: Maximizing Your Support System

Support for stroke survivors is essential for recovery; however, the word
“support” can mean many different things. It is a good idea for you to know the
different types of support and determine how you best receive and respond to
support, so that others know how they can best help you. 

What are the different kinds of support?
Instrumental support is the kind of tangible support you receive when someone
physically provides for you or assists you with something. An example of this is
your best friend coming over to wash your dishes, take your trash to the curb,
or bring you a meal. 

Emotional support speaks more to having loved ones lift you up with their
presence or words to help you with the mental and psychological burden you may
be feeling during your recovery. An example of this is your brother sitting by
your side and telling you he is there for you while you vent about your
frustrations.

Some things to consider to maximize your support network:
 * What things do you need physical help with after your stroke? Examples may be
   related to activities of daily living, such as cutting up your food, helping
   you get in and out of the shower, or providing steadying assistance while you
   transfer from your wheelchair to the bed. Other examples may be related to
   household tasks such as pet care, grocery shopping, or house cleaning.
 * What things do you need check-ins or supervision for after your stroke? 
   Examples include monitoring for medication management after you have
   organized your medicine in a pillbox, checking to make sure there are no
   errors in bill payment, or looking over your weekly schedule to make sure all
   of your appointments are organized.
 * What type of support do you tend to lean toward when you face general life
   challenges? You may find that you prefer tangible, physical help with getting
   things accomplished, or someone to help you tackle a problem by providing you
   problem-solving options. Or, you may prefer someone to stand by your side and
   offer validation for how you are feeling and coping.
 * What plans do you have for emergencies, and how can family or friends support
   you? Think about who you would feel the most comfortable calling should a
   natural disaster take place, should you need to go to the hospital, or even
   should a less-routine event happen such as a big snow storm or a power
   outage. Consider making a list of phone numbers and ways that particular
   people could be helpful, such as driving you where you need to go or bringing
   over water and bread.
 * What specific goals do you have for yourself in order to maintain your
   independence? Caregivers are often just that - caring! They may try to do too
   much or assist with things that you can do independently. It is very useful
   to know ahead of time how they can best lend a hand with what you truly need,
   while allowing you to maintain your self-efficacy with the things you know
   you can handle. Having a clear expectation from the beginning may prevent
   hard feelings down the road.
 * What type of feedback or encouragement do you prefer? Again, often caregivers
   may feel uncertain of how to best support you and would likely do a better
   job if they knew exactly what helps you the most. You may feel that you
   benefit from frequent verbal encouragement for even seemingly small
   accomplishments. Or, you may get annoyed when people acknowledge minor things
   and it may be better if they wait for a bigger milestone before speaking up.
   You may want to be held accountable to stick to your plan of how to make
   progress with a certain task, or this may feel too stressful. Everyone
   benefits from having more clear-cut instructions for what suits you the most!

Remember, this is your journey. Taking the time to evaluate your own personal
needs and lay out how a support person or group of people could best help you
may be a bit of work on the front end, but will likely benefit you and your
friends and family in the long run.

stroke support

Having social support results in better physical and mental outcomes. Read our tips on how to build up your support system, whether in person or virtually.

Finding Your Support System After Stroke

Why is it important to have a post-stroke support system?
You survived a stroke. You have now experienced being admitted to the hospital,
where you endured all kinds of pokes and prods, exams, and imaging. After a few
days to a few weeks, you stabilized medically, and exited the “acute” stage,
promoting you to your “subacute” stage of stroke recovery. At this point, you
likely experienced all kinds of therapy interventions to help you relearn and
recover as much safety, independence, and function as possible before you would
go on to the next stage of stroke recovery, the "chronic" stage.

You may have stayed in a rehabilitation hospital or skilled nursing facility, or
you may have discharged home with orders for home health or outpatient
therapies. Throughout all of these stages, you may have found it useful to have
a friend or family member present to help you remember things you were taught,
or just to encourage you to not give up.

Though each person experiences stroke and stroke recovery differently, one thing
remains the same: the stronger your support system, the higher the impact on
mental health, recovery of function, and overall social participation. You may
find the importance of your support system to be much more apparent in the
“chronic” part of your journey, where you have been home for months or even
years after your stroke began, and you are trying your best to remain active and
independent.



How do I find a support system?
Support can come from individuals or groups. It can come from people you have
known your whole life, or people you just met today. You may prefer to seek
support from someone who has never experienced what you are going through who
can offer a fresh perspective, or you may feel that you feel most supported by
someone (or multiple people) whose experiences closely mirror your own.

Sometimes it can be hard to connect with people to start the process of building
your support system. If reaching out and asking for help seems unnerving,
consider checking one of the following online support groups first:

The Stroke Channel TV: an online support group that meets every Tuesday at 11am
PST
http://www.thestrokechannel.tv/support-groups.html

The Stroke Network: an online forum where you can simply read through topics and
responses as a guest, or register and post your thoughts
https://www.strokenetwork.org/

Neofect Support Group: an online interactive resource where NEOFECT users and
prospective users can ask questions, share stories, and create connections
https://www.facebook.com/groups/NeofectSupportGroup/

For those looking for in-person connections, consider these options:

California Support Groups: Several in-person support groups throughout
California compiled by TheStrokeChannel.TV creator Cristopher Ewing
http://www.thestrokechannel.tv/support-groups.html

Stroke Support Group Finder: an American Stroke Association resource helping you
find a stroke support group in your local area 
https://www.stroke.org/en/stroke-support-group-finder



References:

Reblin, M, and Uchino, B. Social and Emotional Support and its Implication for
Health. (2008). Current Opinion in Psychiatry. 21(2):201–205. doi:
10.1097/YCO.0b013e3282f3ad89

Elloker, T, and Rhoda, A. The relationship between social support and
participation in stroke: A systematic review. (2018). African Journal of
Disability. 7: 357. doi: 10.4102/ajod.v7i0.357