Survivor and Caregiver Stories
Steve Giese woke up in the morning and could tell something was not right. He sat up on the edge of his bed and felt a little funny. He began to walk, but he felt unsteady and fell down. He couldn't understand what was going on......Steve was having a stroke.
"I laid there, my head was spinning. I thought, "I have to get to the phone", so I stood up and fell down. I tried to call but couldn't push the right numbers. My brain was telling me I was having a problem, but I didn't know why. I felt very tired so I laid there with the phone in my hand. Eventually, my son called, but I remained unable to talk. My son called my other son who came to my house and called 911."
On the way to the hospital and in the Emergency Room I could recall everything, but I still couldn't make any "sense" as to what was going on. I was confused, I didn't know what was happening and couldn't understand. But, I could tell something was very bad and I was in trouble. I was afraid then- I was mad- I didn't want to live.
All of my family was at the hospital - I was trying to talk but the word would not come out. In my brain I could tell what was going on, but I did not understand. I found that my right hand and arm did not work, within one day I couldn't do anything. "I just wanted out. It took me three days to calm down enough where I could understand that people were trying to help me. It was Dr. Chin though that really got through to me. He said, "You have to decide if you want to live or die. It is up to you. If you want to be better than I can help you, if you won't help yourself then I can't help you. If you do what I tell you, I'll help you. First, you have to get stronger."
The turning point
I spent one month in the hospital and progressed to outpatient rehabilitation. I did all three therapies, physical, occupational and speech. When I first got home I couldn't remember things very well. Even the simple things such as saying my name or telling time. I didn't even know where my hand was in relationship to my whole body!
My occupational therapist, Sue, helped me with the exercises for my hand. In time, I was able to use my hand better. I knew I always wanted to be normal again. My speech therapist, Linda, helped me to know I was normal again. I could look at her eyes and could know that I was normal and I was going to get better."
Linda, speech therapist, indicated Steve is the hardest worker, excellent in follow through and never wavered. Steve's family and friends were there in the beginning, but they did not always understand what Steve meant or really how the stroke was impacting him. It is very difficult for others to know what it is like.
Today Steve participates in Aphasia and Stroke Support Group, he attends a group on Fridays that plays cards, board games and socializes. These things as well as other community activities continue to help him recover. He is first to say, "Family support is so important to a stroke survivor's recovery. It is important to stay together, because it helps the survivor and no one family member/friend can do it all alone. They need to help each other."
Robin Linville, age 51, was in the emergency room with her brother who was a patient the night of February 9, 2007. She recall she felt anxious, confused and dropped a couple of items. "I just felt like I had to get out of there and get some air and I would be ok. I knew something was wrong but didn't know what- I remember thinking why are people looking at me but not doing anything. I drove my mother home about 11:00 pm and she said I almost it a car. When I woke up and dressed for work the next morning, I felt drained. Spilling my coffee on the table and trying to wipe up the mess, I thought I was saying "sorry".....but my mom couldn't understand what I was saying. She asked me to point to what I was saying. I remember crying knowing that something was really not right."
I was taken to the emergency room that morning around 8 a.m.. I couldn't talk.....babbling. I really don't remember anything until I got to my hospital room. I received care on the neurology unit of the hospital for one week then went to outpatient rehabilitation for speech therapy. Jodi Robinson was the first "hand" to hold knowing that it would be "ok". She wasn't going to let me fall in the cracks and made sure that I could recover. The fog continued for 8 months. Initially I had a pocket communicator given to me by Rebecca,my speech therapist. I persevered and have come back to speech therapy two or three times since that initial referral.
According to Linda, speech therapist, Robin gets the telegraphic parts of speech but the grammatical parts are often lost. Symbol combinations are more difficult, sometimes she can write but not say and sometimes she can say it but not write it. Robin says, "Please be patient with people like us to express our thoughts, we are not retarded, please do not be condescending to us. Cognitive listening. Patience. Frustration and struggle. All of those are Aphasia and Apraxia. Processing the brain. At the time of my hospital visit, I couldn't figure out what a remote was or how to make the channel change. Another important point is that we have to find humor because at first you cry all of the time. And, last but not least be aware of stress and what it can do to you."
Alicia Owens, Coordinator of The Stroke Prevention and Recovery Center says "Robin has learned how to manage her stress. Some of the tools that she has implemented for stress management is exercising, she loves walking. Also, she knows her limitations and has given herself permission to say, "I'm done. I need to stop". The speech therapist calls it working smart not hard."
Robin wants people to know how important it is for families to be supportive and not be embarrassed. There is a lot of fear on everyone's part. The patient, the families, their friends. Working through together is valuable. Her message to all is "Never, ever give up hope. Never put us stroke survivors in a closet, we are thrivers! There is a path, sometimes more detours and challenges than we would like. With the love and support of my family, friends, therapists, medical professionals, SPARC, my journey continues one little step after another."
Chris Roberson, 61 year old, decided to take a time out from teaching her third grade student. Chris had been teaching forty years, but this day in May 2004 she was in the hospital for a heart procedure to receive stents. Chris was looking forward to teaching "a few more years."
"The procedure for the stents went fine. I was thankful my family physician had referred me to the cardiologist as I have heart history in my family big time. My father died of heart disease at age 57 and I have three uncles who died at early ages, too. My symptoms were mild though, my back was hurting and I felt tired quite abit. I was a heavy smoker. I wanted to wait it out to see if I would begin to feel better but my physician referred me to the cardiologist who ordered a stress test."
"I vividly recall my stress test was on Friday, I had a procedure to put stents in on Monday, apparently, I had my stroke shortly after, but I was semiconscious and did not realize until Wednesday. My speech, ability to think, and my right arm and foot were affected. I couldn't eat, either. By Friday the medical team had me on the Rehabilitation Unit where we, my family and myself learned that I had aphasia and apraxia. I could understand and had high level listening skills but I couldn't speak. I have difficulty sounding out and sequencing words." According to Chris's speech therapist she has improved dramatically. Now Chris has completed outpatient speech therapy and continues rehabilitation on her own by using talking books and tapes from the local library. She can understand what she reads, but reading out loud is difficult at best.
Although time has passed Chris wants people to know two things. One, that therapy is very important, it lays the foundation for continuing to work independently. Therapy is just the beginning......in addition to formal therapy she continues to attend Aphasia and Stroke Support Group, golfing and many other community activities. Everything that you do to help yourself is so important. And secondly, that there is one thing that all of us have in common, stroke crosses all lines, it knows no age or ethnic background so be proactive in taking care of yourself.
Sue Himes finds herself humming a lot these days, she used to be a whistler. Sue's philosophy is "when you are handed lemons, just look at it and say free lemons".
June 2007 Sue's life changed when her husband, Dave had a stroke. Dave was already hospitalized when he had his stroke. Sue, herself, was dealing with a broken leg and was relying on family and friends to get her to the hospital to seem him. "We have been blessed with a lot of loving and compassionate people in our life". Sue says that she is Dave's cheerleader, "everyone needs a cheerleader". She has helped Dave realize his strengths and the fact that he can still walk, talk, see and finally, drive. Of course, I see more positives then he does because he wants it to be like before the stroke. She feels that "you can't live your life on what you used to be able to do or the might haves" --"I still appreciate the fact we still have each other, go for dinner, go for walks--things we would have done anyway. I think that there is always a path when you are put on this earth --no matter your circumstances you always have a choice. No, we didn't chose the fact that Dave had a stroke but we have had to adjust our life and do the best we can. The stroke has made us stronger and better people. Perhaps my husband does not totally agree but we have the right to disagree--that's life. Our faith has sustained both of us.
I am happy to help him with the things that embarrass him --for instance, using his left hand. In my past work experience I learned to help people celebrate the small gains and that is what I am continuing to do with Dave's circumstances surrounding having the stroke.
Of course, every one of us have dark days, I think that most stroke survivors go through a period of anger. As Alicia Owens, Coordinator of the Stroke Prevention and Recovery Center and I have talked, having a stroke is a life altering event for all of those involved. And, with a life altering event there is grief, anger is one of the stages of grief. Not only will the stroke survivor probably go through anger, but family members probably will, too. Once a person works through their anger that person then can begin to see some purpose to their life and begin to feel some normalcy return. Of course, dark days will still occur now and then, we are only human!
It seems golf was the best activity for Dave because he was about as good as he was before the stroke. This activity seemed to force him to say "hey, this is my life now". Also, we started attending the Genesis Stroke Support Group, actually I had to initiate the call because Dave did not want to attend. By participating in the support group it allowed Dave to see that everyone there had been on the other side of the anger mountain too. The support group is like an extended family, what you say or do there, no matter how ugly, is accepted. It is a safe haven, people feel a respect and freedom to share what they need to, men can actually say they have cried.
Overall, the caregiver needs to advocate for their loved one, it is one of the most important things to do for your loved one and yourself. Then adjust to life and do the best you can...know your support team, your resources, and focus on the "cans". In between we enjoy music, walks, gardening and board games.