I am there for him

21
Aug
Hospital

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury? Family of a Survivor

Family

Q3: Summary – the cause – the injury – today’s quality of life?

My husband was hit by a bicycle while crossing the street near his office about two years ago (June 2011). Because of bleeding part of his brain was removed. Physically, my husband is fine. He walks by himself; he can talk and read and write and shower himself; he goes to the bathroom by himself and can feed himself. On the other hand, he does not realize how overweight he is and how dangerous it is; nor does his personal hygiene bother him. When he goes to the bathroom, there are sometimes accidents and he smells; he does not realize that he smells and that he has to shower. He also is not concerned about whether the clothes he wears are clean or dirty. He cannot really cook for himself. Basically, he stays in the house and either sleeps or looks on the computer (Internet, solitaire.) He used to have several email addresses, but he isn’t interested in that now. He also used to do the household accounts on excel sheets – he doesn’t do that either. I have to remind him to do household chores which he says he will do in a minute – the minute never comes and I usually have to do it. He doesn’t remember what he does each day nor what he eats. He has gained a tremendous amount of weight and doesn’t realize how much he has gained (he thinks he is losing weight.) He gets angry at me when I remind him about his weight. He is always very tired and has no energy to do anything.

Q4: Please share your experience at the time you became aware of the injury?

We are observant Jews and we live in Bnei Brak, Israel. At the time of my husband’s accident, I was recuperating from a broken shoulder (I had fallen from a segway while on a day outing from my workplace three weeks earlier.) I was resting in bed when the call came from the policeman. It was about 11:30 on a Friday morning. I quickly got some other clothes for my husband and other personal items. I honestly thought I was going to the hospital to bring him home. I took my youngest daughter with me. My husband was taking to Beilinson Hospital in Petach Tikvah, Israel and was admitted ti the intensive care ward in the Department of Neurosurgery.

Q5: Tell about the experience immediately after the injury. Surgery? Coma?

On Saturday morning my husband was operated on because of bleeding in the brain. Since we don’t answer the phone on Saturday, we didn’t know about this until Saturday night. He was on a respirator and kept under sedation for about two weeks. He had a tube in his throat. Eventually, the medical staff let him wake up from the sedation.

Q6: Tell us about the hospital stay after the survivor was no longer in a coma

My husband recognized the immediate family. He was basically bedridden and eventually developed a very bad bed sore. He still had the tube down his throat and couldn’t talk. Eventually, the doctors manage to get the tube out and my husband was breathing on his own. At this point, the medical staff started talking about rehabilitation. My husband had been diagnosed as having sleep apnea some ten years ago and the medical staff was concerned that there may be breathing complications. My husband was therefore referred to Beit Rivka in Petach Tikvah, where he would get the best treatment for the breathing problems.

Q7: Tell us about the time in rehabilitation?

The day after he arrived in rehab at Beit Rivka, he had problems with salt. Since Beit Rivka is rehab only, he was sent back to Beilinson Hospital to the Internal Medicine Ward. (I forgot to mention that while in Intensive Care Neurosugery, my husband came down with pneumonia and also something called acetinobacter.) Therefore, when he went back to Beilinson, he was in isolation. We eventually crossed that hurdle. When the salts in the his body were stabilized, he was sent to Beit Levinstein in Raanana for rehabilitation. At this point, the sleep apnea didn’t exist. In the beginning, he couldn’t sit or stand or get out of bed. He also had a very bad bed sore that almost reached to the bone. I made sure that every day either one of the children or myself would come in the afternoon and that someone would be with him over the weekend (Friday and Saturday.) I would try to get there also in the mornings about every other week or so just to talk to the medical staff and to see how he was progressing. Eventually, he was able to sit and stand; and then eventually walk. Around December (2011) he was allowed to come home for the weekend; and then we were told that he’d be coming home finally at the end of February.

Q8: Tell us about coming home!

When he came home, he still had the bed sore and I was taught how to take care of it. I would take him to the nurse at the health clinic and she would check to make sure that everything was okay; she also had a nurse who deals specifically with bed sores come to see him. By the time he left, Levinstein he was walking on his own two feet; he could sit and stand and feed and pretty much shower himself (although sometimes he did need help) and go to the bath room by himself. He also wasn’t wearing diapers any more. He did use Canadian walking sticks, but only for a short time. He had lost weight (about ten kilo) and was still overweight, but it was manageable. The most important part of his coming home was that no one every gave me any kind of help in trying to deal with him or his problems. I would ask him to do things and sometimes they would get done and sometimes not. I was never sure what would get done or not and it this has caused a tremendous strain on me. My children do not understand what is happening here. In addition to going back to Levinstein for checkups, I have taken him to neurologists and psychiatrists, eye doctor, etc. I went back to work once he went to Levinstein (mid-July 2011). I am pretty much running the house myself these days and it is very frustrating. The most frightening thing at the moment is that he doesn’t realize how dangerous the obesity is and I can’t get him to stop eating. That is my major concern right now.

Q9: “Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma”

Miraculous, survival, frustrating, confusing, happy

Q10: What year did the injury happen?

2011

Q11: Tell us about life today?

Life is very difficult today. I lost my best friend and I want him back. I would like to learn how to help my husband get back to normal and / or to help him cope with his disability. All the household chores fall upon me; he will go shopping with me sometimes; my husband is constantly tired and says he has no strength for anything. I do not know how to react. I have married children and children who are away in school (everyone is over the age of 18). I don’t think they really understand what I am going through.

Q12: What do you want to tell others going through the same process?

Treatments, understandings and actions that made a difference?

I have a very close friend in Petach Tikvah whose husband was just diagnosed with cancer. He has been in hospital for about two months now. He is physically not well, but mentally intact. My friend has constantly turned to me for advice because she knows that my husband was also hospitalized, etc. Even though the situations are different, I can offer advice on where to get help and medical supplies and emergency ambulances. Most important: we treat ourselves to special things – like an outing at the beach or eating out at a nice restaurant, just the two of us. And that’s the best – knowing that she is there for me and I am there for her.

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