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."