The poignant lyrics of The Beatles' 1965 ballad, “I'm Looking Through You,” is a metaphor for how many caregivers feel about the emotional and behavioral changes that can occur in stroke survivors:
Figure. STROKE SURVI...Image Tools
I'm looking through you, where did you go?
I thought I knew you, what did I know?
In the United States, an estimated 795,000 people experience a first or recurrent stroke annually and with it, changes in their emotions or behavior. These transitions — not always permanent, but perplexing and frustrating — may be exceedingly difficult for the survivor, family and friends to understand.
You don't look different, but you have changed.
I'm looking through you, you're not the same.
How it was may no longer be how it is. “Life as I knew it was gone. The hardest part was that I lost Mary,” says Mary Morgan, age 69, of Kill Devil Hills, NC. She pines for “the other” Mary — her former self “lost” in 1996, when she suffered a stroke in the right side of her brain caused by a clot in the brain stem. “I miss her so much. It's like an alien jumped in her body,” says Mary.
Having lost all feeling on the left side of her body, Mary now needs the assistance of a power wheelchair. She admits to becoming frequently depressed — between 30 to 50 percent of stroke survivors develop depression, either because of biochemical changes in the post-stroke brain or emotional reactions to ongoing physical or cognitive impairment.
An inspiring public speaker and author of a soul-baring exposé about her stroke, Like a Bolt, (www.likeabolt.com), Mary says that she lashed out at her caregiver daughter. “Such angry thoughts weren't really my thoughts. I was in the background listening. It was very much of a detached feeling. A statement would come out of my mouth, and I'd think, ‘Where did that come from?’”
When Mary's impatience reared its imperious head — “I want that done right now”— understandably, her daughter Wendy Sessler, now 43, initially became irritated. Wendy — the third of Mary's five children — has come to understand that as a survivor's brain is healing, “they're in there fighting to say how they feel.” Wendy kept reminding herself, “This is the person who loved you and cared for you” when you were a helpless baby, and the mother-daughter bond prevailed when roles reversed, with daughter caring for mother.
So Wendy became the patient teacher. Mary would sometimes get ahead of herself while trying to perform a specific task, thinking she had completed steps she had skipped. For instance, she sometimes ended up putting her shoes on before her socks. “She's still Mom,” Wendy realized, “but she's Mom now and she has to do it a different way.”
THE TIES THAT BIND
“What caregivers need most is a sense of being acknowledged,” says Barry J. Jacobs, Psy.D., clinical psychologist, family therapist and author of The Emotional Survival Guide for Caregivers. A simple “thank you” would suffice, if offered. But most of the time, caregiving is literally a thankless job.
“Understanding that survivor personality changes have a neurological basis may help the caregiver cope better. Caregivers can learn to maintain a relationship with a ‘different’ person, and learn to like them in other ways than before,” Jacobs says.
Still, simply coping and making adjustments may not be enough, especially in a marriage. “The well spouse can become resentful, thinking the survivor is willfully neglecting the partner's emotional needs.”
That loss of empathy isn't intentional, but it hurts — as spousal caregiver Marcia Warmath, 51, knows all too well. This devoted wife recalls the day she completely lost it when a salesperson refused to take back a pair of wrong-size penny loafers: “I was a raving lunatic, shouting. I was ‘watching’ myself behave this way, like an out-of-body experience,” recalls Marcia, who lives in San Antonio, TX.
Emotionally exhausted, Marcia had reached her caregiver boiling point, unable to hide feelings she would not convey to Malcolm, her husband of 31 years, who had four strokes between March and June of 2001. The first three, “posterior circulation” strokes, occurred in the left side of his brain, which caused partial paralysis on the right side of his body; the last, in the brain stem, was deemed “massive.”
Six feet tall and 180 pounds, after six months of rehab Malcolm couldn't sit up or turn over and needed to use a feeding tube. Marcia took a month off to be his primary caregiver. When she went back to work Marcia came home at lunch — still does most days — and a part-time helper came to check on him in the afternoons.
Figure. MARCIA AND M...Image Tools
One year after the stroke Malcolm was gradually learning to do more things by himself, but Marcia wasn't prepared for her husband's hopelessness and despair — which took the form of physical abuse. “He'd hit me, punch me, kick me, with aggression that was never previously ‘him.’”
“If a loved one acts out, do not rage back,” Jacobs advises. “Leave the room or house, when you can, and always maintain calm in the face of rage. This is not a personal attack, but is a reaction to frustration.”
Jacobs explains that when a stroke survivor is confronted with a deficit — for instance, answering the phone and not recalling the name of the caller when asked about the call — he or she may feel humiliated and become enraged. “It's a fairly common response to having the deficit exposed — a catastrophic reaction. The caregiver [needs to] move out of harm's reach if the reaction is severe, showing that ‘I don't want to be treated this way.’”
Malcolm's combativeness was tempered with the help of an anti-depressant, anti-anxiety medication. Malcolm is coming to accept who he is now. Because of persistent problems with balance, he continues to use a wheelchair; he doesn't see well enough to read, but he can watch TV; and though he doesn't hear well, he is still resistant to getting hearing aids.
Marcia also accepts who Malcolm is now. But she needed help getting there. She's found religion a great comfort, and has become more spiritual, and instead of keeping her frustrations and hurts bottled up she talks to friends and keeps a journal. A stress management class — which Jacobs recommends — was also helpful.
To find a support group or stress management program for caregivers, check out these resources:
▪ HEART INSIGHT Online (www.HeartInsight.com) Click on the “Resources” link in the menu on the left-hand side of the Home Page.
▪ American Stroke Association (www.StrokeAssociation.org/caregivers)
▪ Well Spouse Association (www.WellSpouse.org) Click on the “Support Programs” link on the navigation bar at the top of the Home Page.
Time really does heal all wounds — both the survivor's and the caregivers, Jacobs assures. When it comes down to it, caregivers and survivors are in a partnership to understand and work through this profound, life-changing experience, which is a time of starting over and, ultimately, of meaningful self-discovery for them both.
The Patient's Perspective
Based upon her experiences, Mary Morgan has developed tips to help caregivers communicate effectively with stroke survivors:
▪ Don't assume that you and the survivor are on the same page. If the survivor says, “That hurts, I don't like it,” believe that.
▪ Survivors typically can't handle making choices, so limit the number of options and break it down. Instead of asking “Do you want chicken, beef or fish?” try “Do you want chicken? Or do you want beef? Or do you want fish?” If he or she can't or won't choose, whatever everyone else had will be acceptable most of the time. If I didn't want to eat what was offered or I wasn't hungry, I said so. You can't force it. The family simply waited until I was hungry; everyone gets hungry eventually
▪ Minimize noise and distractions. Too much sensory input will put the survivor brain into the “blender” mode. The mind can't focus on any one thing and it stresses you out.
▪ Be generous with touching and hugging. Once a nurse held my hand and rubbed my arm. It was just amazing how my whole body just lit up.
▪ Easier said than done, but try not to take nasty comments personally — especially if you're family. Many times the one you love the most is the one you hurt the most. Bite your tongue and try not to get into tit-for-tat negative comments, which could escalate into shouting matches or physical abuse.
▪ Be alert to signs of depression or suicidal thoughts, for instance, listlessness, loss of appetite, crying spells or statements like “I'd be better off dead.” Caregivers can reaffirm their support by saying, “Please don't hurt yourself. You matter to me. I want you to be around.”
The Doctor's Perspective
Scottsdale-based clinical neuropsychologist Kevin O'Brien, Ph.D., A.B.P.P.-Cn., offers these suggestions to help you understand why a loved one is difficult to deal with, and what to do:
▪ Survivors recover at different rates — and recovery may take a lifetime — but the most significant recovery usually occurs within three to four months after a stroke. You may observe changes, but physiological and neuropsychological testing can validate the recovery process.
▪ The patient can't always tell the doctor everything that's going on, so you need to be an advocate. Write down the doctor's recommendations, and ensure follow-through. When a new medicine is prescribed, ask about behavioral or psychological effects.
▪ When the “brakes are off” due to stroke-related brain injury, behavioral changes are involuntary. Some patients are acutely aware their behavior is inappropriate — which may cause them to become depressed — others remain completely unaware.
▪ It's normal to feel anger and resentment at your loved for not taking good enough care of his or her health, forcing you in this situation, but a stroke survivor would much rather be healthy and independent than be debilitated and dependent on you.
▪ If you're feeling hopeless and depressed over your loved one's disabilities, dependency or abusiveness, see your doctor for a referral to a counseling program, or to a psychiatrist who handles caregiver coping issues. Caregiver support groups are also a good resource for finding the help you need.
▪ If behavioral changes become unmanageable or dangerous, inform your loved one's neurologist or psychiatrist. Antidepressants may help with agitation and aggressiveness; in more serious cases, short-term hospitalization in an in-patient or specialized geriatric unit may be necessary. Learn state regulations about guardianship or the mental health Power of Attorney (POA).
To understand a stroke survivor's behavior, one must first understand the part of the brain that is affected and how badly it is injured, says Robert J. Adams, M.D., M.S., Professor of Neuroscience and Director of the Stroke Center at the Medical University of South Carolina.
For instance, “frontal lobe injuries can release behaviors that are uncharacteristically problematic,” says Adams — anger, rage or sudden outbursts that can shock or confound caregivers. The frontal lobe is the seat of our problem solving and reasoning ability, adds Dr. Jacobs. “An injury [to this part of the brain] can also cause a person to go from laughter to tears within seconds.”
A battery of neuropsychological tests can help assess brain function and cognitive abilities.
Testing provides valuable information, but so does living with a stroke survivor. Caregivers who notice personality and behavior changes should seek medical help for the stroke survivor, urges Jacobs. “Often stroke survivors can benefit from ... psychiatric medicine [as] it makes them happier and makes maintaining relationships easier.”
© 2009 American Heart Association, Inc.