Helping Others Understand: Post-Stroke Depression
Helping Others Understand is an open-ended, intermittent series designed to support stroke survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there is a specific post-stroke condition you’d like to see us address in future issues, we invite you to let us know: email@example.com.
Depression is common after stroke, affecting an estimated one-third to two-thirds of all survivors. Post-stroke depression (PSD) can occur on a continuum, from mild symptoms, often referred to as adjustment-related depression, to clinical depression, also known as major depressive disorder. In the early phases of stroke recovery, a reactive or adjustment-related depression can present as the survivor begins to come to terms with how the stroke might change their life. Chronic depression, (i.e., major depressive disorder) most often occurs when survivors return home and is often related to quality-of-life experience. “Post-stroke depression requires appropriate assessment. It’s essential to spend time with the stroke survivor to accurately evaluate the individual neurological and other factors,” said Kimberly McGuire, Ph.D., ABPP, clinical psychologist at Kessler Institute of Rehabilitation. “Typically, what we see in the acute rehabilitation setting is a combination of both the neurological changes that have occurred as the result of the stroke and the patient’s awareness of his or her limitations.”
Recognizing the signs of depression
The symptoms of post-stroke depression may vary and change over time, but generally patients and families should watch for:
- Persistent sad, anxious or “empty” mood
- Depressed mood; loss of interest/pleasure
- Sleep disturbance
- Decreased motivation
- Flattening of affect
- Feelings of hopelessness, pessimism
- Feelings of guilt, worthlessness, helplessness (feeling like a burden)
- Decreased energy, fatigue, being “slowed down”
- Difficulty concentrating, remembering, making decisions
- Appetite disturbance
- Thoughts of death or suicide
When five or more of the above symptoms persist for two or more weeks, a survivor may be experiencing post-stroke depression.
The consequences of untreated PSD include prolonged hospitalization, difficulty with social integration and potentially limited functional recovery. Therefore, it is important to identify and treat PSD as soon as possible.
Understanding how to help
A survivor’s depression can significantly impact family and caregivers. “In my clinical experience, family and friends often develop a sense of helplessness when the survivor’s interest and motivation are impacted negatively,” said McGuire. “The family may begin to feel like they can’t do anything to help this formerly independent and strong-willed person to get better. It’s very difficult for everyone involved to adjust to the situation,” explained McGuire. “However, the number one thing survivors want their families and friends to understand is that they are still the same person inside. And that they want to be treated with the same level of respect they had prior to the stroke. In particular, they don’t want to be infantilized or treated like a child.”
Ways in which family and friends can show their support and understanding include:
- Be patient.
- Don’t finish their sentences.
- Talk to them, not at them.
- Maintain eye contact.
“Interacting with a loved one who is experiencing depression requires patience, respect and simply slowing down, as well as having to repeat yourself without irritation,” McGuire said. “Recognize that the survivor is likely to be experiencing a lot of fatigue, especially in the acute phase of recovery. Overall, it is important for family members to communicate that they believe the survivor is the same person despite the challenges or limitations they now face.”
Dr. Kimberly McGuire
McGuire suggests that caregivers and family members can benefit from counseling, particularly if they are taking on additional roles and are feeling overwhelmed with adjusting to the new normal. “If the survivor is feeling misunderstood, then I would urge both survivor and caregiver to consider a few sessions of family therapy,” McGuire said. “It doesn’t usually need to be ongoing, only enough to understand the process of stroke recovery, gain information and talk about some of the strategies that can be helpful.”
Aphasia can create additional challenges for survivors with post-stroke depression. According to McGuire, different types of aphasia require different approaches to care and treatment. For example, if a stroke survivor is coping with expressive aphasia — the loss of the ability to produce language — the individual understands what is being said yet is often unable to produce a coherent verbal response. The most productive approach in these situations is to structure inquiries and dialogue that require only a yes/no response, such as, “Are you feeling sad today?” rather than “How are you feeling?” This approach allows the stroke survivor to respond by nodding their head, signaling thumbs up or down, using yes/no cards or writing an answer on a piece of paper.
Receptive aphasia presents different challenges as the stroke survivor has difficulty in understanding verbal or written information. “When dealing with receptive aphasia, we teach families to observe the survivor’s behaviors, including sleep patterns, eye contact when interacting with others, tearfulness, agitation, and/or engagement in therapies and other activities,” explained McGuire. “Their observations along with assessments by the clinical team can help to determine if the individual is experiencing post-stroke depression or if other factors are at play and what treatment and strategies to pursue.”
Both survivor and caregiver support groups can also be helpful because of the input from others who have walked this path. “I’m a huge advocate of support groups,” McGuire said. “In scientific literature, support is often cited as the number one predictor of positive progress. At Kessler Institute, for example, we run both inpatient and outpatient support groups for survivors and families/caregivers. Participants consistently express how important the shared information, encouragement and empowerment is to their own recovery. It’s a very productive experience, one that helps to ‘normalize’ life ahead. Knowing that you are not alone — that others are going through what you are going through goes a long way in coping effectively.”
McGuire emphasized two crucial points for caregivers to understand. “First, post-stroke depression is real. It is not that the survivor is being lazy or unmotivated. Second, PSD needs to be treated, and typically that is with a combination of medication and individual or group therapy. Without treatment, the survivor may face prolonged hospitalizations or rehospitalizations. It can also limit the ultimate level of functional recovery and definitely compromises the survivor’s social integration.”
A Survivor’s Perspective
How did depression feel to you?
On April 3rd, I took a shower, had a cup of coffee, walked my dog, went to school, taught my 1st graders, came home, vegged out, ate supper, walked my dog and went to bed. On April 4th, I couldn’t do any of those things because I was in the ER and then ICU with a massive stroke at age 30.
I felt no hurt or pain in my body. It was silent, but the machines treating me made a lot of noise and terrified me. I just wanted to go home to my dog. UNREAL! I could not be having a stroke! After a month or so, I did go home, but I couldn’t drink or eat, couldn’t work, struggled to walk my dog and couldn’t sleep for fear of aspirating in my sleep.
I didn’t leave the stroke at the hospital or nursing home, and I certainly wasn’t Rachel when I got home again. I didn’t fit my life. I didn’t trust my body. My swallow didn’t work, and most of my body just felt dead. A stroke is a brain attack, they told me. I lost almost 2 million brain cells for every minute I stroked. And I certainly felt fuzzy. There were things that didn’t occur to me to do, things I had done my whole life — like walk my dog or do crossword puzzles, and I felt horrible when I forgot to walk her or couldn’t find words in my head for the puzzles. My mind was different, and I wasn’t in control.
And I couldn’t eat or drink. I’d never given a thought to the gift of being able to handle these basic needs, ever. But when it was gone, I lost my humanity and I didn’t want to exist. But I had no words for myself, or anyone else, about ME. I couldn’t think, feel, act or behave as I had on April 3rd. I was gone. Everything that I took for granted, and everything I did as Rachel, was gone.
I looked pretty normal on the outside — apart from the circus freak show act I saw in my twisted face. My brain didn’t work right on the inside. I could stroke out at any second. I had no control. Fear paralyzed me. I was safe at my appointments with my doctors. But at home, I just wanted to stay in bed. And then I just wanted to stay asleep and not wake up. That’s the truth.
These words were not in my head or coming out my mouth, but that was my reality. You know in the winter when you pile blanket after blanket on top of you at night to keep warm? The weight of the blankets presses you down into your bed. You are kinda cozy and warm but also increasingly unmotivated to move. You just stay under covers and after a while you are so sluggish you cannot move. I felt like that — not really sad or in pain, but not active and increasingly heavy and unable to move. I didn’t see a point to moving. And moving wasn’t easy. So I stayed under covers where I was safe.
What do you want your loved ones and friends to understand about what it’s like to live with depression after stroke?
When I was six months out from my stroke, I sent a TOP 10 LIST OF BENEFITS TO HAVING A STROKE AT 30 to David Letterman. For example: “Having a stroke where you lose your swallow is a painless and easy way to drop 20 pounds in 15 days!” I was finding a positive from my stroke. A producer wrote me back, thanking me for my entry, giving sympathy on my suffering and advising me to enter again with a less personal, more neutral subject.
They didn’t get it or me. It was raw and dark material. I was raw.
So here are my TOP 10 THINGS I WANT FRIENDS AND FAMILY OF STROKE SURVIVORS TO KNOW ABOUT POST-STROKE DEPRESSION ... from someone who knows.
10: I don’t have the words to tell you what’s wrong. I really don’t and I feel bad about it.
9: I’m not in control and I’m confused.
8: I feel like a burden. I was independent. I’m not now and it makes me sad.
7: I don’t know what would help me feel better. But keep loving me.
6: I feel unlovable. I don’t love myself. Touch heals. Hug me.
5: I don’t recognize myself in the mirror.
4: I am working harder than you can imagine, at everything.
3: Are you afraid of me or are you afraid of having your own stroke? Stroke is scary. But I am not scary. Stay near.
2: Life can’t go back to the way it was and neither can I. I’m changed. I didn’t choose to change. I don’t want to change. I can’t deal with any more change.
1: I didn’t survive a stroke to be miserable. I can be magnificent. But I need help and I need HOPE!
It hurts to remember how depressed I was for a long time after my stroke. Fourteen years post-stroke, loving her life, this Proud Stroke Survivor is brought to tears, humbled forever by memories of me then! The depression was 24/7. It is not every day now. The depression no longer renders me useless. I know the depression. It is a part of me and we are friends.
I start my day with coffee and gratitude for the ability to swallow, my kitchen, my dog and my life. As my friend Priscilla taught me, “I’m too blessed to be depressed.”
The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how profoundly post-stroke depression may be impacting a survivor. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet that you can print or share via email or social media with family and friends.