Caring for a Stroke Survivor

Written by Julie Taylor

Caring for stroke survivor with aphasia (total speech loss) or dysphasia (difficulty speaking) can be a challenge..

Check out this video about her own stroke by Dr Jill Bolte-Taylor

One of the hardest things, I think, is perhaps the need to encourage the survivor to do as much as possible for himself.  There is so much evidence now that the very act of trying to speak – even if no words come out, the effort of trying itself – helps form new pathways and connections.  It’s also incredibly hard to be ‘on duty’ 24/7 and to have lost your own support and partnership, if the survivor is your spouse.  So let him or her do as much as possible on their own - you'll appreciate it and, believe it or not, so will they.  Eventually!

Losing the ability to communicate is also extremely hard for the stroke survivor.  It’s like being a prisoner in your own head - often thought and intelligence are unaffected. It’s a real challenge to explain to family members, friends, even doctors, nurses, and other professional caregivers what they need or feel. You may not be certain if the stroke survivor understand what you are trying to tell him or her. 'WHAT I MEAN IS' by qualified speech therapists Hilary Dibben and Anita Kess is a unique, terrific language therapy book that will help other professionals and caring friends and family provide speech therapy after a stroke or brain injury.  I believe this book is unique - I've never found anything even close (if you know of something, please EMAIL ME).

However, there are always ways to help rebuild the lines of communication between people with aphasia and those who care for them. "What I Mean Is" a wonderful speech therapy book available on this site that was developed by a very skilled and compassionate speech therapist – CLICK HERE to read about it.

Whenever possible – even though it may seem callous and cruel even to suggest it – try and make light of these circumstances…  Let the survivor struggle a bit and do things for themselves. Quietly enjoy being alive today.  This is actually the best chance for their improvement - and for your survival.  LIVING WITH STROKE is a very useful book to help you get your quality of life back.

Let me explain…  The brain forges new pathways around the damaged areas if you regularly force it to… Children who have suffered strokes make amazing recoveries and doctors agree that adults could make similar big strides too.  Please read the article on Brain Adaptability here on this site.  A child turns everything into a game – and we have to do these things anyway.

As such children practice them over and over.  And the result…

Early intervention is very important.  Ask the neurologist or other doctor if there is a speech pathologist who can see the person with aphasia as soon as possible.  Use the directory here on RBY (ReBuildingYou) and check out the therapists available in your area.  If you should find a therapist who is not listed here – wherever you live – please let us know so that we can share this information with others.  The sooner the stroke survivor starts to get rehabilitation and speech therapy, the better chances for recovery. Many hospitals have speech language pathologists on staff. The nurses caring for people with aphasia may have a lot of experience communicating with such people. They may also have useful information to share with you.  Consider starting therapy yourself while you're on the wait-list for the speech and/or physiotherapists.  WHAT I MEAN IS a workbook for higher functioning dysphasics that allows you to offer unique therapy that most speech therapists have not heard of.  Exercise, especially pilates, is fabulous - here is a PILATES DVD so that you can start exercises at home.  Walks in the fresh air are wonderful too. 

The wife of one stroke survivor with aphasia explained: “The more the brain is used, the more it works”. An environment enriched with words, music, and activity may stimulate the brain to build new pathways. In addition to the actual work done by the therapists, there is the psychological component that is extremely important. My husband is very sensitive to the whole situation”.

Seek out a support network for both of you. A strong support system can help both for the person with aphasia and for the caregiver. Your hospital or rehabilitation center or other community facility can be important sources of information about building a support network.

There is also access here on the site to other caregivers and survivors – with just about every kind of diagnosis.  Your local chapter of Heart and Stroke Foundation can also be an important resource.

Surrounding individuals with supportive staff who can guide survivors and caregivers along the road to recovery can be enormously helpful. It is also helpful for caregivers and loved ones to connect with others facing the same – the RBY Village Forum community (which is brand new) and Blog are great resources. It is important for you to realize you are not alone.

Get out and socialize.  Because communicating becomes difficult for the person with aphasia, it can be easy to become isolated. The same can also become true for those caring for the person with aphasia. If you have been involved with community affairs or with volunteering before the stroke, don’t give this up. Don’t let aphasia take over you life. One good way to do this is to join programs that are especially for people with aphasia and their caregivers.

Joy is a basic and vital need, without which it is pretty difficult to rebuild a satisfying and ‘good’ life…

Hope. It used to be thought that recovery from aphasia occurred only during the first few months after the stroke - the prognosis after that was grim. However, new research suggests that many survivors continue to improve years after their event. So don’t lose hope. When the person with aphasia tries to communicate something and experiences difficulty, encourage him or her to think “not yet” instead of “not ever”. A positive attitude can also keep depression and feelings of sadness and hopelessness at bay.

Helpful tips…

• A laptop computer that will play music CD’s, movie DVD’s, email from friends and family is the best and most incredible gift – even for an elderly patient who insists that they would never use it and that they might ‘hate’ computers…
  
• Audio and even video clips of loved ones can be sent easily by email and we have discovered that knowing that the survivor has access to the internet is as much benefit to the caregiver as it is for the survivor.  My very good friend insisted that she did not want a computer.  We arranged to buy one anyway.  For months it sat in a corner by her hospital bed and was only used when one of us visited and put on a CD or watched a movie or showed her her own email.  Gradually, after months, she slowly began to use it herself.  Now, 2 years later, she has new friends with similar interests – and history – all over the world.  She uses email regularly to stay in touch with her friends.  She is even starting to build her own website and business online.  Her knowledge is now far superior to ours

• While the stoke survivor with aphasia is still in hospital, bring in photos of friends, family members, gatherings such as birthday parties or other events that may be of interest. Write the names and identities in the back of the photos so that nursing staff and other hospital caregivers can talk about them with the stroke survivor – all of this can be managed easily with a laptop compter.

• The stroke survivor may tire easily, especially during the early days of recovery. Keep conversations short and simple. Give them time to grasp one idea before moving to another. People with aphasia often use hints from the environment, as well as gestures and facial expressions, to help them understand what’s being said.  My own recovery has been nothing short of amazing to me - I can even give a powerpoint presentation provided I have a PowerPoint slide show to prompt me. Without it I get stuck and stammer.  With it I rush off and speak fluently without notes.  I'm not quite sure how this works?
  

• In the early stages of recovery, it’s best to limit visitors to a few close friends or family members. Explain to them what aphasia is and how they can help, and keep the visits short. As the stroke survivor recovers and becomes stronger, the length of visits and the number of visitors can increase. Some stroke survivors with aphasia may not want to see friends or relatives until they’ve adjusted to the disability or their communication skills have improved.

• Slowly reintroduce social situations. Don’t let the stroke survivor withdraw.

• Phrase questions so that the stroke survivor can answer them with a “yes” or “no” or a nod or shake of the head. Be aware that sometimes, the stroke survivor may get these responses confused. Try using a written “yes”, “no”, “I don’t know” and have the person with aphasia point.  However, try not to be too ‘helpful’ as this will actually enable ‘not getting well’…  It’s very important to keep trying to speak.

• Speak in a natural voice - take care to be respectful. Do not speak loudly, unless you know the stroke survivor has a hearing problem – being asphasic doesn’t necessarily equate with deafness! Pauses and speaking at a moderate pace may help the person understand you.  I hated the patronising way people spoke to me, as if I were stupid or a child.
  

• Be aware that some people with aphasia nod “yes” to every question, but in fact, they may not understand, most of what you are saying. Or they may be guessing what you mean, based on what normally happens during a family activity.

• People with aphasia follow a conversation more easily when talking to one person. They may become confused when there are many people taking part in the conversation. Limit the number of people talking in the same room and limit  background noise. Turn off the TV or radio while having a conversation. For myself, I seem quite recovered but I still cannot fade out background noise - I hear everything with equal clarity.  So this is important.
  

• When giving a person with aphasia choices, keep the number of choices limited. During the early stages of recovery, limit the choices to two. For example, ask the stroke survivor, “Would you like coffee or tea?” Try writing down the choices. If the person with aphasia is having difficulty reading, use a drawing beside the written word. In time, as the person recovers, you can try adding more choices.  I understand perfectly well but even now, years later, I find this very difficult - and I hate it when people keep asking me questions!
  

• Use concrete words. Say “leg” instead of “limb”, “bread” instead of “food” and “house” instead of “residence.”

• Don’t rush a person with aphasia. Be patient and give him or her time to come up with the right word. Or, you can give the stroke survivor a list of words to choose from. Don’t be a perfectionist or correct every mistake.

• Remember, some people with aphasia have more difficulty reading and writing than understanding and using spoken words. Writing down messages and asking for response in writing will be frustrating for people with aphasia.

• Encourage the person with aphasia to be as independent as possible and to continue their hobbies and favorite activities. If some hobbies or interests are difficult or impossible, try to find substitutes. For example, a person who finds it difficult to read may enjoy listening to books on tape.

• Remember to find several sources of joy for both of you.  This is so important and often forgotten in the rush of trying to deal with everything else.  What did you enjoy doing when you were young?  Is there something new you’d like to try?  Laughing is truly the best medicine…

• Summarize slowly and clearly what you think the person is trying to say. Ask the stroke survivor if your summary is correct.

• Reassure the person with aphasia that he or she is not alone. There are many people with aphasia and many of them keep on making progress. In fact, many people with aphasia say they are continuing to improve their communication skills in various ways many years after their stroke.

• Let the person know that you are working to learn ways to improve communication between the two of you. Speak to a speech language pathologist or contact your community resources.

• Acknowledge the competence of the person with aphasia. The person with aphasia may be able to think perfectly well and knows what he/she wants to say. Use phrases and gestures that show you still respect the stroke survivor’s intelligence. For example – “I know that you know what you want to say. I know you can’t get the words out. This must be frustrating.”

Don’t forget to care for yourself, too!

Family members and others who are close to the person with aphasia go through several stages as they learn to adjust and cope. Both the stroke survivor and the caregiver can sometimes feel uncertain, isolated, and fearful of the future. Overnight, your world has been turned upside down.

It is natural that family members will mourn the “loss” of their loved one – the person who ‘was’ is not there at the moment. Many relatives of stroke survivors with aphasia feel anger or bitterness, as well as fear and depression, because of the extreme change that has occurred in their lives. This is OK – your life has been turned upside down too.  Learning to adjust to this new circumstance will take time. It’s important for family members and other caregivers to give themselves permission to grieve and go through the process of readjustment.

At a time when you might feel overwhelmed by your loss, it is important to remember you own needs. Learn to seek out and ask for help during this difficult time.

Special devices may help

Some stroke survivors with aphasia may benefit from the use of special devices. Some of these devices can be simple things such as picture cards, communication books and Scrabble® tiles.  Personally I love my computer and it's become my always-present assistant.  I can't manage without the calendar and reminder alarms; I love email; surf the internet and play free games specially designed to retrain the brain - try www.freerice.com -  expand my knowledge and help me 'put my language back together again'.  When I first came out of the coma I'd been in for several months, I was unable to speak at all.  For months what came out of my head was just gibberish - although I knew in my head what I wanted to say and it was so very frustrating.  A laptop computer is the most precious of any device.

Others may be more “high tech” devices that rely on new computer technology. For example, there are PDA’s and laptops and some stroke survivors even use portable computers to “speak” for them. This helps them regain a sense of their independence.

A speech language pathologist can tell you if such augmentative and alternative communications devices will be beneficial for you loved one. Some of the factors to consider include:

• The needs of the stroke survivor and his/her ability to use various types of devices

• The expectations, motivations and abilities of caregiver and family – personally I think it is OK for a caregiver to be motivated by concern for their own need to share the load…  And I speak as one of the survivors!

• The family doctor or neurologist’s opinion

For more information on augmentative and alternative communications, see the Web site of the American Speech-Language-Hearing Association at www.asha.org