Care Giving When Stroke Happens

Strokes, or “brain attacks,” disable Americans more than any other disease. With an interruption of blood to the brain, a stroke may have similar symptoms; but as everyone’s brain is different, so are the effects of each person’s stroke.

There is no rhyme or reason to the severity of strokes and or to the recovery a person may need to undergo. Stroke damage can affect a loved one’s entire body and cause a wide range of disabilities, from mild to severe. Paralysis, difficulty thinking and speaking, as well as a multitude of emotional issues are just some of the challenges a caregiver can expect to see a loved one experience post-stroke.

Learning to help aid through this transitional period with optimism and organization will make life easier, and happier, for both caregivers and loved one.


Even though each loved one has a different experience after a stroke, they have one thing in common: life is changed in some way or another. It’s important a caregiver know which type of stroke their loved one is facing, so symptoms, precautions and/or treatments can be tailored accordingly.

There are two kinds of major strokes. The most common, an ischemic stroke, is caused by a blood clot which blocks a brain’s blood vessel. The other, a hemorrhagic stroke, is caused when a blood vessel breaks and bleeds into the brain.

A different stroke, commonly known as a “mini-stroke,” is the TIA or Transient Ischemic Attack. These should be taken as seriously as a major stroke because they are usually a precursor of what’s to come. The only difference is that in a TIA, the blockage in the blood vessel is temporary and the incident lasts less than five minutes—usually a minute.

Many strokes are not preceded by a TIA, but one-third of people who experience a TIA experience a major stroke within a year. There are many new technologies available today to help prevent serious damage if the stroke is caught early on. Knowing the symptoms and signs may spare a loved one from permanent brain damage. Professionals say “time lost is brain lost” and that if a person is even suspected of having a stroke, call 911 immediately and don’t wait for symptoms to clear up.

Here are the main symptoms of a major stroke and TIA:

  • Sudden numbness or weakness in the face, arms or legs,
  • especially on one side of the body
  • Sudden confusion, trouble speaking or understanding
  • Sudden trouble seeing
  • Sudden trouble walking as well as dizziness, loss of
  • balance or coordination
  • Sudden, severe headache

First Time Around

Not all strokes are caught in time. If a loved one is alone at the time of the attack, too much time may elapse before a call for help can be placed.

For caregivers who find themselves in the new world of caring for a loved one who just suffered a major stroke, there are a few things first-timers should now.

From the initial trip to the hospital and through the recovery process, it’s important to take notes and keep records. The “Stroke Caregivers Handbook” from The Stroke Network recommends using two notebooks or three-ring binders with folders: one for notes for encounters with medical professionals and the other for records, correspondence, receipts, and bills.

It’s important to keep an up-to-date list of medications, dosages and when prescriptions were filled. At each and every medical appointment, that information will be requested.

One particular piece of advice this handbook offers is to not pay any bills from medical providers until the claims are completely processed through the insurance. If a caregiver pays any portion of the bill, it essentially says that the payee takes full responsibility and revokes any ability to appeal the insurance in the future, if necessary.

There are a few symptoms a loved one can expect to face early on after a stroke. The first is aphasia, or difficulty communicating. This could range from complete loss of speech to the occasional difficulty finding a right word. Those with aphasia are mentally competent, thus making this a frustrating disorder for a caregiver and loved one.

Another common symptom is subluxation of the shoulder on the stroke-affected side of a loved one’s body. This causes dead weight and needs to be supported so the shoulder does come out of its socket.

Breakdown of overall skin integrity and loss of bladder and bowel function are also symptoms present in those newly diagnosed with a stroke.

Depression and a wide gamut of emotional issues are something a caregiver must be aware of and tread delicately through with their loved one. It’s normal for a person to mourn the loss of their “old” self and caregivers should learn to practice empathy instead of sympathy, reminding a loved one that they are still alive and have much to offer, just in a new way.

The “New” Normal

After a major stroke, most people spend time in a hospital becoming stable enough to move on for rehabilitation, either at a special facility or home, depending on the caregiver’s availability and circumstances.

The “Stroke Caregivers Handbook” says that most caregivers who have been through this phase will not even consider outpatient therapy to begin with because a loved one will be very weak and need more assistance initially than they think.

Insurance companies may dictate where and how long a loved one can remain at a rehab facility, but caregivers are important advocates in these situations. A loved one must begin to accept a new “normal” after a stroke. Many times, it’s hard to know what physical and mental limitations will improve with continued therapy. Only time will tell.

The first thing to address at home is a loved one’s safety, especially in the bathroom. A loved one may also come home with a new set of habits which were formed around a different level of care, and most likely, the ability to move around in a secure environment.

Caregivers must help establish a new routine within the living quarters available to their loved one, as well as the availability of a caregiver. This also may mean meals are at different times than at the rehab facility and treats are not always served at 7 p.m., for example. A caregiver needs to decide which habits can be kept and which need to be tossed.

A caregiver will also be facing a change in routine and have a shock to their “normal.” The main thing is to accept reality and progress as it comes, even though it may not lead back to the way things were before the stroke. Family and friends may not understand and therapy visits will become less and less, leaving the caregiver and loved one to wade through the post-stroke life alone. There are hope and joy to be found in each situation, however.

Don’t worry, be happy

Depression is a very real side effect of a stroke, for both caregiver and loved one. Honesty about emotions is a first step to dealing with them and moving forward.

Studies show that an optimistic attitude reduces the risk of stroke overall, but affirmations and positive thinking are just as important after a stroke.

Frustration and discouragement will be normal, but even small victories should be celebrated and empower caregivers and loved ones to go the next step. A big hurdle is an embarrassment associated with not being able to function as before, especially in public. Caregivers should encourage public outings because it will lessen the likeliness of depression and lonely thoughts.

Positive thinking and expecting the best, not the worst, promote health and prevention of future strokes. It also helps a caregiver keep their best health and attitude, for their role as caretaker and any others they may have.

Strokes are complex and affect both loved one and caregiver in a multitude of ways. With good organization, awareness and attitude, it can be handled in a way that leaves both fulfilled and enjoying life, whatever it may bring.