Interview with CBT specialists: "Stroke affects the whole family, not just the stroke survivor"

Agnese Orupe, a cognitive behavioral therapist in Latvia, says: "In our country we tend to not see it that way, but elsewhere it is considered that the whole family suffers from stroke, not just the stroke survivor. A stroke basically affects the whole family ecosystem." It really is true that not only the stroke survivor is in need of support - the whole family involved is. In this article, read an interview about stroke with Latvia's leading CBT specialists Yanis Grants, a psychology doctor and a brain injury rehabilitation specialist, and Agnese who talk about stroke patients, the role of their families in the recovery process, and the support needed for the stroke survivor and their families - a very important yet often forgotten subject.

Agnese mentions that stroke can affect a person emotionally, and that can be very stressful for both the stroke survivor and their families. "It can show in many different ways. A stroke survivor can become very tearful. Or aggressive. They might not recognize common items anymore, and they can become scared of them. It can even happen that a person who has never cursed in their lives, suddenly is cursing all the time," says Agnese. Yanis emphasizes that great changes come along with stroke. One has been able to cope with their own life all their life suddenly feels stressed about everything they try to attempt: "Family members who are used to a person who is competent, capable, someone they liked spending time with. Who was able to give and to take. And now they experience something very different." As a result the whole family experiences a lot of stress and the sudden changes take a lot of energy.

Family's role after a stroke

Both therapists talk about the role of the family during the rehabilitation process, adding that the stroke survivor has found themselves in a difficult, life changing situation. "Because of the limitations the stroke survivor experiences, they practically need to find a new meaning in life. And the more severe the damage, the harder it is to find one. A stroke survivor can feel like a huge burden to their family, therefore love from the family, as well as patience, care and support are invaluable. Without them, it might not even be possible to cope," says Agnese.

Yanis adds that roles in the family often change after a stroke. If previously a person was supporting other family members, then all of a sudden they are in need of support. "Now they are ones incapable and need to be cared for. And I think these changes in family roles are very, very difficult." Agnese compares it to when a baby is born. The help and support needed is about the same, and even the length of recovery can be similar to raising a baby. Yet, comparing to a child, accepting help for an adult can be very difficult. As Agnese says, "If a child accepts help without hesitation, and sometimes even asks for it, then an adult has it especially hard that all of a sudden he needs to be cared for."

Yanis adds that while it is very important for the families to support their loved one with a stroke, it is also important to encourage them to act and do things on their own. When you allow that instead of doing things for them, It will promote a better recovery progress and won't let them get accustomed to too much help. "They need to do their exercises, but I think that sometimes family members who are very nice start doing what the patient needs to do. They start to serve them in all kinds of ways where it would be better if the stroke survivor did that for themselves." And sometimes the stroke survivor, in the confused state that they are, would not be able to evaluate how much help they should or shouldn't accept. As a result, it does more harm than good. "Hence it is important to define those roles. And the family has to support, encourage, and help, but they can't do the things that the patient needs to do," Agnese sums up.

Both therapists stress that it is important for the stroke survivor to be as independent as possible, yet support from family is an integral part. "It is important to express pride, support and be happy even about the smallest steps of progress. And to give positive encouragement and feedback," says Agnese. Yanis agrees, "Positive reaction is the best thing that you can give. And when you walk into their room to help, it is important that you do it with a smile. That you show that you want to be there. That you are happy to see them." He stresses that family arguments should be avoided in front of the stroke survivor loved one, and conflicts resolved elsewhere. Otherwise that will only add more stress to everyone, and a stroke survivor has a harder time dealing with stress.

Most common fears for families

Agnese says that a stroke is usually something new for a family, something that they haven't experienced before. Therefore families might feel scared about the new situation. Yanis and Agnese discuss the most common fears that families experience, and what can be done to cope with them. "From experience I'd like to mention that most often families fear that they will do harm to their loved one," says Yanis. Family members often think that by urging their loved one to move, to use their arms and legs, they do harm because their loved one is in pain. And then the opposite happens - family members back out and don't get involved anymore.

"It is important to understand that the injury, the damaged cells are in the brain. And the brain controls the movement in our arms and legs with the signals that it sends through our nervous system. Hence, when family tries to help their loved one and he or she says "It's hard, i'm in pain", it is not because their body parts hurt. It is due to the over sensitivity caused by the trauma." It is important to understand that it is nothing bad and no harm is being done. "We are used to that we experience pain only when something harmful happens. But it is not the case with stroke. And people often don't know this and they back out not to cause harm." Therefore, Yanis considers that the greatest fears families have is to harm their loved one. And as a result they back out and don't provide the kind of support and help that is needed.

Agnese says that it is not only recommended to encourage to act and do things, it is necessary: "The worst thing we can do to a stroke survivor is to let them sleep all the time. It increases the chance for blood clots to form in the joints. Then when they stand up, they will get dizzy which is normal, but it will get harder and harder for them. The joints will become stiff and they will basically start hurting not because of the stroke induced trauma, but from the fact that they are not used for a prolonged time."

Yanis also mentions that the situation is even more serious because stroke survivors are usually elderly people. And when their muscles are not being used, they can experience muscle atrophy very quickly. After that regaining muscle function can be very difficult, sometimes even impossible. "It is very important to stand as much as possible, move, walk. Just constantly do things," Yanis adds. It is better to do something than do nothing at all, Agnese continues: "Anything, even if it is not so good, even if it is not so right. Any movement is better than no movement at all. And if it is unclear what exercises to do, VIGO program will provide exercises and show step by step what can be done. You just have to do them, little steps, in order to achieve progress," says Yanis.

Possibility to recover - more possible than it seems

Both therapists stress one very important aspect which often affects how the stroke survivor and their family sees recovery from stroke. They mention that the stroke survivor and their families often leave the hospital with a very gloomy and dark view of the future, without much hope to recover. It happens because medical personnel is not used to organized planned rehabilitation programs, knowing that they haven't been available due to lack of resources, finances and other circumstances for most people. And it is understandable that without rehabilitation, hopes to recover aren't really high.

"And so family members and their loved one perceive a very negative picture of the future while still at the hospital. They are given predictions from a position that such rehabilitation programs aren't available. And even if they are, people don't use them, and this view becomes so dark, so hopeless, thinking that everything is going to be as it is or even worse," says Yanis. He mentions that because people are in a sensitive position, they listen to such recovery prospects and accept it as truth. "But here medical specialists don't consider that there are ways how everything can be changed. And that is what successful rehabilitation does. VIGO is one of very concrete and well made rehabilitation options that can indeed change this outcome. And you shouldn't accept such hopeless views towards future," Yanis discloses.

Agnese also talks about the discoveries that are made everyday about our brains, therefore any kind of recovery prospects cannot be assumed with certainty: "None of us know how capable our brains are. And what scientists discover every day more and more is that our brains are phenomenal. There are even cases where damage has been so severe and widespread, yet despite prognosis, even lethal prognosis, people recover and are able to function." Therefore, not knowing the ability and the potential of our brain, Agnese emphasizes the only known truth: "What we can assure with 100% certainty is that if you are not going to exercise, you are not going to improve. But if you exercise, the only way to see how great the improvement can be is with time and consistency."

Recovery from stroke - a collaboration process for the family

Yanis also emphasizes the need to collaborate and maintain a positive environment for a more successful recovery. "The family members should collaborate. If there is more than one person, it could be a good idea to work almost like in shifts helping each other. While one works and helps the loved one with a stroke, others rest, and so on. It is very important to try and maintain that positive environment within the family, and be grateful for everyone who gets involved and tries to help. It is very important to provide this positive feedback and express gratitude." Yanis says that in this way a positive energy is being created in the family, along with nice words and support. The stroke survivor will feel this and it will definitely help.

Stroke is very tough on everyone involved, and family members shouldn't feel guilty about their anger and negative emotions. "We talk about the feelings and emotions that the stroke survivor might experience. But we sometimes forget that family members also have a lot of feelings in this situation. They can also feel angry, sad, want to cry, and it is very important for them to take care of their emotional health," Agnese emphasizes. She mentions that it would be important for family members to talk to someone they trust, who listens to them and supports them during this difficult time. One way is to write a diary to record feelings and emotions. "Probably what you shouldn't do is be angry in front of your loved one with a stroke. Because that can only increase their sense of guilt and feeling like a burden to their family."

Both therapists emphasize that even though recovery from stroke is a long and time consuming process, and is also very tiring, it can also be very rewarding as time goes by. "Seeing a person who only slept after the hospital and couldn't move now being able to cook and take care of themselves. It can bring a lot of joy," says Agnese. Yanis agrees and mentions that the reward can be even greater with time when the stroke survivor will not only take care of themselves but will also give to others. And may even regain the role they used to plan in the family, and give their loved ones what they used to give. Both therapists sum up that the most important thing is not to give up, to stick to the rehabilitation program meticulously. And give praise to your loved one and yourselves about the good job that you have all done and the progress that you achieved.