Caregiving Your Spouse Following A Brain Injury

It is a challenging and difficult task to be a caregiver for a spouse. The caregiver will often have to be in the role of being parent to their spouse. This is not a comfortable situation for either the brain injured survivor or for the ‘healthy’ partner but may very often be necessary – particularly if there is no one else to act in the ‘caregiver’ capacity.

With a brain injury and possibly physical injuries, the injured person may be a shell of who he/she once was. Because of this, caregivers often become ‘married widows’ because of the loss of the relationship they had prior to the injury. They may no longer have an equal partner. With the many changes in their spouse, social occasions with friends and family may also gradually become fewer and fewer. This places the ‘healthy’ partner in a ‘social limbo’ situation.

Caregivers very often receive little sympathy or support from family and friends because the injured person will often be on their best behaviour when they occasionally do see those outside of immediate family members. Survivors usually save their worst behaviour for their spouses.

And for this reason, occasionally parents or grown children, (particularly if they are not the caregiver’s children), of an adult survivor may attempt to intervene to the detriment of the attempts of the spousal caregiver to give support and stability. The intervention sometimes may not be in the form of help but rather of criticism or attempts to dissuade the brain-injured survivor to cooperate. i.e.: not attending support groups or therapy sessions, etc. if he/she doesn’t want to or the parents or children don’t think there is a need for them to go. This makes the role of a spousal caregiver even more difficult.

For the non-injured person, although the spouse they once knew may no longer exist, he/she is still alive. How do they mourn the loss of what is gone but is actually there? For many there will be a process of mourning for the relationship that once existed but few friends and family members will understand or have sympathy for those feelings of grief that will likely be experienced by the non-injured spouse.

It is important for caregivers to look after themselves so that they remain healthy and are able to make better decisions. It is also important that they stay connected with others – their friends and family, as well as possibly joining a support group. It will be equally important for them to occasionally get respite and take time for themselves, and if necessary, they must ask for help. No one knows if help is needed unless it is asked for.

Because of the difficulties of being a caregiver, many relationships dissolve following the injury. Those who make the decision to leave the relationship usually do so with feelings of guilt and certainly with feelings of failure. Friends and family will sometimes not understand this choice and may fault the caregiver for ‘giving up’ especially if it appears to others that things are going well.

For those who would criticize, it is best to remember that none of us know what goes on behind closed doors. For each of us, a decision such as this can only be made by those individuals involved.

"Roller Coaster Ride With Brain Injury (For Loved Ones)"

In the last part of this book, at twelve months post injury, I did a question-and-answer section to see where Larry was at this stage and for comparison for the future. During this period there was much he did not remember. One thing he mentioned that I found rather interesting was that because he had been out of the loop for so long, he felt a little uncomfortable - more like a guest in someone else's home rather than that he was home. Part of this may have had to do with the fact that we had only moved to the house two months before his accident.

........

"Larry initially had no inclination to read my story but later he listened while I read it to him. I told him I was going to tell it like it was and wasn't pulling any punches. He had no problem with that he said, if it helped someone else."

I also included a series of exercises that I did with Larry shortly after his accident. These included orientation aid exercises, memory, therapy and cognitive exercises. I believe very strongly in the value of doing exercises as soon as possible after a brain injury.

Excerpt from "Roller Coaster Ride With Brain Injury (For Loved Ones)"

Epilogue

"Larry still becomes affected by 'bumps in the road' so we are still in the process of steps forward and backward. He may always be affected by 'bumps'. But all in all, I believe he has done well considering his injuries. I also believe that having him do cognitive exercises at an early stage after his injury increased his recovery at a quicker rate than may have happened had he received no cognitive therapy until a later date."

......

"I'm sure there will be many things we will have to learn to deal with; his inability to cope when things don't go well, resulting in his frustration, anger and irritability; his tendency to be self-centered; rigidity in his thinking; being unmotivated and his memory difficulties."

.......

"Although he may never be the person he was before his accident, who he has become is better than the alternative might have been. There may still be times when I will have to remember not to take things personally when he is going through a frustrated period; and there may also be times ahead where it will be two steps forward and one step back. Hopefully over time he will learn to cope with the many 'bumps' there are in every road."

Brain Injuries and Denial

Denial is often a survival technique used when the reality of their situation cannot be accepted; they have not come to terms with what has been lost, and they have not acknowledged their grief. Anna Freud has called this type of denial a defense mechanism.

Another form is when a person can see the limitations but doesn’t understand the impact of it on their daily life – they just don’t get it. This has been referred to as the ‘Anton Syndrome’.

Denial can sabotage any progress towards recovery. In order to work at getting better, it is necessary to make realistic adjustments to their disabilities. When a brain injured survivor is faced with the realization of problems relating to his/her capabilities and deficits, there will more than likely be increased anxiety. This creates a problem and many will deny, like the proverbial ostrich with his head buried in the sand – if you ignore it and pretend it doesn’t exist, perhaps it will go away. By being in denial, attention is drawn away from the problem; there is no need to work towards recovery, and there is no necessity to be accountable.

Their focus then may be placed on the fact that they’re tired, that they have aches and pains or they may blame other people rather than admit that there may be a problem with their brain’s cognitive functioning. Quite often it is the person closest to them where the finger of blame is most often pointed.

My partner is a survivor who is in denial. He is not convinced of his brain injury although he does admit to memory and motivation problems. However, his main focus has become centered on his legs and the pain he feels in his knee.

It is difficult for someone who has suffered a brain injury to be cognitively aware and to learn compensatory strategies. It is easier for them to deny rather than to work towards achieving a new normal; many survivors of brain injuries will remain in denial their entire lives.

“The greatest barrier to someone achieving their potential is their denial of it.” By Simon Travaglia

Excerpt from "Roller Coaster Ride With Brain Injury (For Loved Ones)"

Adaptations And Adjustments

"Because Larry's file had been closed, I did research on Internet to discover ways to help him adapt to his deficits. One study said, "Those with brain injuries must find different ways to deal with their new limitations. With help and patience, as well as using strategies and tools to compensate, they can overcome their deficits. After reading this excerpt to Larry, I asked him if he was interested in trying, with my help, to adapt to his deficits. He said, "probably not."

His decision, I realized, left me with the challenge of learning to adapt and adjust to his brain injury myself, without his help. I decided, after thinking about the challenge, that adapting and adjusting was more a matter of coping and accepting.

According to McCubbin and McCubbin, 1991, the necessary requirements involve several important issues. First, there must be resiliency for there to be the ability to adapt and adjust to living with a family member with brain injury. Other important requirements included the following:

Personal Resources:......

Family Resources:.......

Social Support:.........

Coping patterns:........"

Excerpt from "Roller Coaster Ride With Brain Injury (For Loved Ones)"

Bumps In The Road

"Larry was back to being argumentative, disagreeable, cantankerous, belligerent, self-centered and downright unpleasant. If I didn't agree with him about something, he became very angry. He wouldn't discuss anything. He was very upset that he hadn't heard anything about the date for his Driving Assessment - that is what had set him off. It was another 'bump'. I e-mailed the ICBC therapist to let her know that he'd become very anxious about not hearing of a date for when he would be having the Assessment. She responded that she had heard nothing either.

Larry finally decided that he was going to get the insurance on his own car because he was determined that he was going to drive. I told him if he was going to drive when he didn't have his driver's license that I wan't going to take him to get the insurance. He said he'd walk there - a distance of about ten blocks each way. Although he complains about the pain in his legs, he made no comment when he got back about his legs hurting, in spite of the long walk.

Larry had angrily called the ICBC coordinator and told her he was going to drive his motorhome whether he had his license back or not. The ICBC therapist explained to him, when she came to visit, that things take time and he wasn't the only one waiting. I suggested to Larry that perhaps the ICBC coordinator wasn't the one to be having a temper tantrum with because they were the ones who hold the power and will determine when things are going to happen. He only became angrier with me."

Excerpt from "Roller Coaster Ride With Brain Injury (For Loved Ones)"

Two Steps Forward and One Step Back

The ICBC therapist called to see how things were going with Larry. "He's doing quite well," I told her, "and the party went very well. He didn't drink anything and he seemed to be okay with it. Uh, I know its two steps forward and one step back but do you think there will be any more steps back?"

Laughing she said, "I wish I had a crystal ball but I don't. Things will probably go along well for a while and then he'll probably get bored with the exercises or something. Or his lack of independence may hit him again. It's difficult to know what bump will set him off but there are very likely going to be more bumps along the way."

That wasn't what I wanted to hear. "He will probably also go through a grieving process about not being able to do what he once was able to do," she continued.

Life Goes On

"Larry began his physiotherapy program. He would be going three hours a day, five days a week. He was not very happy when he came home after the first session. It was harder than he imagined it was going to be and his body was sore. He got electrical therapy on his knee; he used the bicycle and treadmill machine and other weight machines as well as doing exercises on his own. I hoped it was not going to be another 'bump' in the road."

.......

"Larry was still smoking in the bedroom/ensuite. I hesitated for some time mentioning it to him again in case it would affect his mood. I didn't want another unpleasant episode. Finally, I decided to take the risk and brought the subject up, reminding him of how I felt about smoking. I also asked him if he remembered he had been told smoking wasn't good for the healing process of his brain.

Looking me straight in the face, he again denied that he had been smoking."

Brain Injuries - Understanding Metacognition

Metacognition, as defined by Wikipedia, is ‘cognition about cognition’ or ‘knowing about knowing’. i.e.: it is knowledge concerning one’s own cognitive processes – awareness and self-awareness.

A survivor I spoke with said that it is an awareness of thoughts as well as behaviour. She said that you can’t alter behaviour and attitude until you know you are doing something. She said metacognition is the beginning of real rehabilitation and that cognitive therapy will help with the process.

John Flavell has written much on this subject. (1979, 1987). He divides the process into the categories of: person variables, task variables and strategy variables. He feels it has to do with how each person learns (the learning process and the planning process for each particular task).

Metacognition is the knowledge of self and the realization that it must be combined with commitment, focus and attitude. It involves an awareness of control over the process of thinking.

Commitment, attitude and focus are extremely important when working towards success. In order for someone to succeed, they must be entirely committed to the task at hand and must be persistent in their efforts.

A good attitude is about being positive and accountable. Your attitude on what you want to achieve will determine the result of what you get. Having a negative outlook will only bring more negativity.

To be focused is to have a definite and doable goal. Being focused helps to be successful in the performance of specific tasks. This thought is reinforced when they realize that their success is based upon their own efforts. Once they realize that they know how things work, they can plan, evaluate and then problem-solve each task.

“A human being can alter his life by altering his attitudes.” By William James

"Our thoughts create our reality - where we put our focus is the direction we tend to go." By Peter McWilliams

"Success doesn't come to you - you go to it." By Marva Collins

Excerpt From 'Roller Coaster Ride With Brain Injury (For Loved Ones)'

Not Taking It Personally

.....

"The following morning I came downstairs about fifteen minutes after him. He was sitting at the dining room table playing solitaire. I made him a breakfast of scrambled eggs and toast and placed it on the table in front of him.

"I've already eaten."

Looking around I saw nothing to indicate that he had eaten. "You have to eat Larry. You didn't have dinner last night."

Baring his teeth and glaring at me he said, "If I want to eat, I'll eat. If I don't want to eat, I won't." Gathering up his bills, he growled, "You can drop me off at the bank."

Looking at the snow and the ice on the sidewalks and he with his crutches, I said, "I'll wait for you. It's dangerous to walk in this stuff with your crutches."

"I'm not coming back and you can wait until you're blue in the face. I'm going someplace else."

He got out of the car and without much alternative, I came home. I then called the ICBC therapist.

.......

After speaking with him, his therapist said that his biggest thing was that all of his independence had been taken away from him and I'm one of the ones who had taken it away and who was telling him what to do. He was also angry by the fact that his license had been removed. She told him she would organize a taxi account for him so he could go to the clinic and to his doctor appointments on his own so he would feel more independent. He said he didn't want me helping him with things - he wanted me to 'butt out'. She said if he refused to take his medication that they would send someone to give it to him so I wouldn't have to get into an altercation with him. As a final comment she said, "Don't take it personally."

Although that is what everyone says, it is difficult not to take it personally when a person is looking directly at you with anger and hatred on his face. I do believe, if only at that moment, there is a personal nature to it.

Role Changes Following A Brain Injury

After a traumatic brain injury, it is very common for roles to change. Often the survivor is not able to do what he/she once did. i.e.: they cannot return to the job they once had; they may not be able to help in ways they once did within the home; their role as a parent may have changed, as well as that of a spouse.

Where there has been a serious injury and one partner is unabe to return to work, the financial situation in the household most likely will change. A stay-at-home mom may have to shoulder the responsibilities of working, often at a low-paying job. That person may possibly have the additional responsibility of looking after a family if there are children still living at home, as well as looking after the injured survivor. When the main wage earner is no longer able to work, there is often a financial hardship placed on the family.

All of the household responsibilities may now have to be assumed by the 'healthy' partner and all decisions may also have to be made solely by that person. It may no longer be a joint effort or an equal partnership. 'What do you think' questions may no longer be able to be asked - or answered. The strength and the coping abilities of the 'healthy' spouse will be important during this difficult period.

The injured survivor may no longer be able to parent as he/she once did. Anger, irritability and frustration may be the dominant issue and may cause problems where young children are concerned. This puts an additional burden of responsibility on the non-injured partner and can create a domino effect within the family structure as more and more stress is placed upon the 'healthy' partner. For the non-injured spouse, it may appear as if there is now an additional child to care for. This is especially true if there is not a large family support system or if no insurance is available for medical, therapeutic and other assistance.

Their relationship as a couple may also have changed. The survivor very often will lack empathy and may have become self-centered. He/she may, as a result, live in a 'me' world with little concern for his/her partner's problems. The brain-injured person may have difficulties showing affection. These issues will almost certainly have a detrimental effect upon their relationship. But at the very least, the onus is placed almost entirely on the shoulders of the non-injured partner regarding the health of their relationship.

The above instances are mainly where roles may change - possibly only for a short time or it may be forever.

Excerpt from 'Roller Coaster Ride With Brain Injury (For Loved Ones)'

Chapter Ten

The End of the First Phase

"Larry was leaving the hospital! He was happy to be going home and I was fearful of what I might be facing.

Before we left I talked to the social worker. She gave me information on the Acquired Brain Injury Program which Larry had been referred to. The doctor wanted to talk to me before he discharged Larry to get my assurance that I felt I would be able to handle him. I wasn't sure but felt if he continued with his medications that hopefully it would be alright.

His pleasant mood continued to reign. The following morning I said, "I know you're putting weight on your leg but I'm not going to nag you about it. You know what the consequences are and you are the one who will have to live with them. But I AM going to insist that you take your medication because if you don't, I will be the one who has to bear the consequences of that. And I don't intend to." He took his pill.

..........

Then things began to change drastically."

Excerpt from 'Roller Coaster Ride With Brain Injury (For Loved Ones)'

Anger and Frustration

"Day sixty-one was the beginning of some more new changes. Around this time Larry's frustration and anger were becoming very specifically directed at me. On this particular day when I got to the hospital he was cranky and complained about the therapist not knowing what she was doing; about them doing nothing for him; how he had to sit and twiddle his thumbs all day watching the sun come up and the sun go down; that he hadn't gone for a walk; and that now they were putting cream on his feet and legs for no reason.

"We're doing it because you have a fungus," one nurse told him patiently as she liberally spread the cream onto his legs and feet.

Shrugging, he said, "Well, knock your socks off then."

......... "That same week Larry went for x-rays. "Good news," he greeted me when I arrived at the hospital. "I can't weight bear for four more weeks but the doctor said I can probably go home next week."

My heart almost stopped beating at the prospect of bringing him home. I wasn't ready for him to come home while he was in his present state of mind. I didn't know if I could hold up to twenty-four hours of nasty treatment and being talked to like I was nothing more than a rat in his garbage.

"But I can't watch you twenty-four hours a day to make sure you don't injure your leg. You can't be trusted not to put your weight on it. If you could guarantee me that you would do as you are supposed to do and wouldn't be nasty to me, it would be a different story." (The comment about going home was made by the orthopedic surgeon who had no idea what his behavior had been like; he had been speaking from a surgical point of view).

"I can't guarantee you that," he told me. "I am not going to stay in the hospital for another four weeks. Everyone around here seems to be more concerned about you than they are about me." He continued to be argumentative, unreasonable, sulky, self-centered and complaining.

His nasty treatment of me was becoming increasingly difficult to handle and I spent most of each day either in tears or near to tears."

Excerpt from 'Roller Coaster Ride With Brain Injury (For Loved Ones)'

Changes On His Road To Rehabilitation

"At the Care Centre, Larry seemed to become even more frustrated and angry. He became a very difficult patient and began 'lumping' me in with those he considered were the 'bad guys' (the hospital staff). Trying to get him to do any exercises to help with his memory and other issues with his brain injury was like butting my head against the wall. During this period of time, he thought the staff should be doing things for him and he shouldn't have to do anything for himself even when he was able to.

I reminded him of the ball I had brought in previously so he could squeeze it to help build up the strength in his hands and upper body - he wouldn't do it. I again suggested that he be proactive - that it was his body and he should have the most interest in making it well. He insisted that it wasn't up to him. He insisted they should be taking him to the exercise pool but they couldn't because he couldn't weight bear and he wouldn't listen to instructions and/or couldn't remember them.

During this period Larry often asked me to leave. Some days he was so difficult that I dreaded the thought of returning the following day. One day I was so frustrated with his behavior that I left. But most days I stayed for about six or seven hours. His biggest area of difficulty during this time seemed to be his short-term memory. He couldn't remember his recent 'yesterdays'. There were exercises which I tried to convince him were extremely important to do but most often he argued."

Excerpt from 'Roller Coaster Ride With Brain Injury (For Loved Ones)

Doing Things His Way

"Larry is convinced that he can walk (in spite of his two broken legs) and insists he can go to the bathroom on his own. He won't listen to the nurses, the doctor or me. "We'll just negotiate the time I have to stay off my leg," he told me.

"Larry," I said with more than a little exasperation, "some things can be negotiated but the healing of bones can't be; it is one of those things that you just have to accept. The healing process can't be hurried but it can be hindered and it definitely can't be negotiated."

"Everything can be negotiated," he answered angrily.

They sent him for x-rays and decided that as yet he hadn't done any extensive damage. After this last escapade they put a monitor on his bed so that if he tried for another adventure, it would alert them. He was extremely angry about the monitor.

"I wasn't walking in the hall," he told me belligerently. "I was up on the roof and no one said anything about that. I spent the night up there and then they left me sitting in a wheelchair all morning. I met Todd at the railway station too and no one worried about that either."

He was becoming an increasingly difficult patient. One of the nurses told me it was for this reason that he wouldn't be going home because of how difficult he would be for me to handle."

Excerpt from 'Roller Coaster Ride With Brain Injury (For Loved Ones)'

Panic Sets In

"One day I was later than usual getting into the hospital. He seemed to be quite annoyed with me and barely acknowledged my presence. Then later when I wouldn't undo his restraints, he said, "Why don't you get the f..... out of here." Although I didn't realize it at that moment, it was the beginning of his quite lengthy period of nastiness.

Because he couldn't remember much of his past, I tried doing memory exercises with him. Often he would stare at me and stubbornly resist doing them or else he would shrug and say nothing, completely ignoring my efforts at trying to help him.

In the Land of the Confused

"On the ward, Larry was assigned a sitter so one of his hands could be unrestrained but he became so violent with her that they were forced to totally restrain him again. While trying to get out of bed, he glared and bared his teeth at her and said, "I have to frigging get out of here." There were times when he directed the same type of anger towards me as well.

He often went off on tangents. At one time he thought one of his friends had something to do with raising me. When one of the nurses asked him questions relating to his health, he told her he had quit smoking three years ago but later was looking all over for cigarettes. Another time he looked at me with shock and asked, "Where are they?"

"Where are what?"

"Our drinks. I just poured them."

One day when my brother came to visit, Larry said, "I drink about six cups of coffee a day and then I go for the hard stuff."

"What's the 'hard stuff', my brother asked?

"That's when I have it with cream and sugar."

Excerpt from 'Roller Coaster Ride With Brain Injury (For Loved Ones)'

Chapter III

"Look who's here. Do you know who this is, Larry?"

Looking at me he answered, "Steve."

"He's just joking," I laughed. I soon realized, however, that none of his answers were making any sense. It wasn't long before I became aware, with a sick feeling of dread in the pit of my stomach, that he hadn't been joking and didn't seem to know who I was.

Later in the visit he began to look at me very strangely.

"Do you know what my name is?" I asked him.

With a puzzled look on his face he said, "It isn't what you want it to be."

"What do you think I want it to be?"

"Coffee and toast," he answered."

Later - "Quickly finding a nurse I tearfully said, "He doesn't seem to remember anything from before his accident. Is he going to get his memory back?"

"We have been asking him dates and he has no idea what month it is or even what year. He thinks it's 1996."

"How would he know me? I thought. "We didn't know each other in 1996."

Excerpt from 'Roller Coaster Ride With Brain Injury (For Loved Ones)'

Introduction

"'Roller Coaster Ride With Brain Injury (For Loved Ones)' has been written as a result of my partner's serious motorcycle accident. When I realized how difficult it was to get information on brain injuries or on how family members can help their brain-injured loved ones, I knew there was a need for something to be written. There seemed to be very little that was readily available for those close to the injured person in learning how to deal with the monumental changes in both the injured person's life and those of his family and friends."

"I found it was also sometimes difficult to get any extensive information from the doctors or nurses. This was partly because at the beginning very little seemed to be known about the severity of his injury or what the result of his injury would be. Further, I became aware that the more questions I asked, the more variety of answers I received. Each person I talked to seemed to have a different opinion on both his injury as well as his recovery prognosis.

By writing this book about our situation, I hope to help others in a similar situation realize they are not alone. There will be progress and although it appears to be slow - brain injury progress is often two steps forward and one step back - it will happen."

Our First Day In Hell

"Unable to stop the floodgate of tears, I cried the whole way to the hospital, praying that Larry would be alive. Karen, the Social Worker, met me in the Emergency and led me to a Family Room. "They are stabilizing him and then he'll be going for a CT scan. I'll let you know when you can see him."

With no one to talk to, my only company was the terrifying images that plagued my thoughts. I could not control my flood of tears and no matter how many times I brushed them aside, they continued to fall. It was like trying to contain water in a bag made of cloth. The half hour or so I sat alone in the room with my brain alternating between mush and the horrible imagines that cascaded through my head, my usually calm nature did not hold up very well."

Ways To Improve Short-Term Memory Following a Brain Injury

Short-term memory loss is one of the most common deficits following a brain injury and one that the survivor is usually most aware of. With a concerted effort, this loss can be improved upon. The following are ways to improve memory problems:

- Make a list of what can be remembered from the previous day. i.e.: what was eaten for breakfast, lunch and dinner; what was done in the morning, afternoon and evening; who was spoken to, and what the conversations were about.
- Have the injured person read the newspaper and then later in the day, or the next day query him/her on what the article or articles were about.
- Similarly, ask him/her what they remember of something they were told one, two or three days previously.
- After going for a drive or an outing, two or three days later ask him/her what they remember of the event. i.e.: was the server a male or a female; what had they ordered to eat; what had the weather been like, or anything specific about what had been seen, heard or done.
- Be purposefully aware in any new situation in order to be able to remember events and anything specific. For example: forgetting where you parked your car at the mall may not be solely a matter of forgetting as it is of not taking special note when you left your car of where you did park it - it may be more of an issue of awareness.
- Listen carefully. Often the fact of just having listened will be of help when trying to remember people and conversations. This is particularly true with being introduced to new people.
- Internally repeat new things, like the name of a person when being introduced. Anything that is repeated has a better chance of being remembered.
- This also includes anything that is written down. Writing something down places the incident more firmly into the memory bank. Keeping a daily diary or journal will help because the process of writing in it will help the memory plus there is a record to refer to for assistance in remembering.
- Carry a notebook to record such things as new people's names, appointments, to-do lists and any other pertinent information to assist with memory.
- Another idea is: if there were bread, milk, eggs, potatoes and cereal to pick up at the store, it helps to remember what the items are if the number of items is remembered.

Practicing the above exercises will help with memory difficulties. Many of the exercises for short-term memory loss can help any of us but particularly those who have sustained a brain injury.

Additionally, there are other problems that will interfere with memory. Fatigue - when someone is tired, it is difficult to be 'on top of things' and to be able to remember. Anxiety will also interfere with memory. i.e.: if you are nervous when you are meeting someone new, it may make it more difficult to remember their name.

The effort to improve short-term memory is like everything else. It will take effort and perseverance. Nothing comes easily so the desire to improve one's memory has to be important to that person.