Normally, I really like for my posts to speak to the individual with a brain injury as well as their caregivers and loved ones, but today, I want to talk to the caregivers.
Throughout my career I have had the pleasure of meeting some of the most amazing caregivers. Family, friends, spouses, significant others, hired caregivers – in my opinion the title of the relationship between the individual and their caregiver is meaningless because love doesn’t care about labels.
I’d like to share an interaction I had recently with one of my patients’ wives.
First, a little set up:
A man is living a normal life, working full time, going on vacations, living with his beautiful wife and son when suddenly, everything changes.
The man is diagnosed with a brain abscess and goes into surgery to have it removed. He has a stroke while on the operating table. He spends three months in a coma, returns home, is placed on hospice, sent back to inpatient rehab and then finally back home where he continues to require 24-hour supervision.
Within 10 months this family has had their lives turned upside down. Nothing will ever be the same again. I want everyone to have an understanding of what my patient’s wife does on any given day to take care of her husband:
Voice/Communication: He still has an open stoma (hole) in his neck from his tracheotomy (tube that was placed in his neck to help him breathe while he was in a coma) that has to be covered when he speaks so that he can be heard and understood.
Caregiver Responsibility: Constant verbal reminders to patient to try and cover his “neck hole” (patient is unable to understand the meaning of the word ‘stoma’), keeping the opening clean from mucus with cotton swabs and consistent bandage changes, covering the stoma herself when patient is unable to understand/process the verbal reminder.
Orientation/Insight: He has difficulty remembering the year and how it relates to the timeline of his life (will often ask about his mother who passed away more than 10 years prior to the incident) or what has happened to him. He will often make statements about getting up to walk, however, has significant weakness in his left leg and needs a hoyer lift (something similar to the image below) to be transferred in and out of his wheelchair.
Caregiver responsibility: It takes two people to use the hoyer lift, it is not safe for the wife to transfer her husband by herself, frequent redirection when the patient asks “where his mother is?” to avoid his emotional response when learning she has passed away.
Attention: He is easily distracted and often has difficulty following single-step instructions.
Caregiver responsibility: limiting amount of words used when talking with the patient because he often loses attention during questions and conversation, constant redirection during activities of daily living (ADL’s) including eating, drinking and providing as much help as possible when changing him.
Left Neglect: His brain does not pay attention to anything on his left side, visual or auditory, and he will often leave food on the left side of his plate or not respond when asked a question by a person sitting on his left.
Caregiver responsibility: putting items in field of vision, talking to him on his right side, constant verbal reminders during meals to help find food and maintain a certain level of independence
Are you overwhelmed yet? I think everyone can agree that just reading the above information makes you feel tired – and that isn’t even half of it.
Let’s take a break for a much needed motivational reminder:
You are amazing!
You are doing an incredible job!
And that’s where I started with my patient’s wife. I think professionals spend so much time giving verbal praise and accolades to our patients that we often forget to give the same to you, the caregiver. I am happy to report that a lot of these issues have improved significantly, but at my last session there was a change.
My patient fell out of his wheelchair, hit his head and broke his nose while both his wife and son were in the room.
How could this happen?
My patient said that he was reaching for something on the floor. While this sounds reasonable, I have included a picture of the type of wheelchair he is in to illustrate what I mean when I say “difficulty with reasoning, problem solving, and insight”.
The height of the chair would prevent anyone sitting in it to reach the ground, regardless of severity of injury. Without understanding and recognition (insight) into his current physical deficits, the patient was not able to evaluate the consequences of trying to lean forward or determine that it might be better to ask for help. This is where the impulsivity kicks in. Being impulsive happens when our brain does not take the time to evaluate it’s current problem and simply says “I see it, I want it”. I think of it as the physical equivalent of our speech filter. Our frontal lobe typically does a really good job of telling us if something is a good idea, a bad idea or if it’s appropriate to keep our mouth shut. After a brain injury, patients can have little to no filter on what they say and what they do. In “fancy talk”, we call that being impulsive.
The patient’s wife has not left his side for 10 months for more than an hour. She recently hired a day time caregiver to help from 9-5, however, because of the patient’s physical status, the wife has to be around at all times because it takes two people (her and the paid caregiver) to get him in and out of his wheelchair and she continues to sleep next to the patient and provide nighttime supervision as there is concern for him falling out of the bed. While her son lives with her, he works and goes to school, is often out of the house every day from 8:30- 5:30, and becomes frustrated with her when she tries to talk about how difficult it is taking care of her husband ALL THE TIME.
This brings me to caregiver burden. This is the physical and emotional toll that is taken on being a caregiver. A few things that I shared with my patient’s wife and what I hope you remember when you feel like you can’t do it anymore:
It’s ok to say that it’s hard. I feel like there can be a lot of guilt associated to saying out loud “I am struggling”.
It’s ok to not have a good day. When have you EVER felt good every day? The fluctuation of good days and bad days happens under ‘normal’ circumstances, and what you are dealing with is certainly not ‘the norm’.
After I let her cry it out – cause sometimes just letting it out can make it so much better – it was time to switch gears into problem solving mode. You know me, I’m not happy if I’m not helping create a plan for functional change.
Here are some of the things we talked about:
- Getting a mobile counseling service to come and work with her, the patient, and their son since communication is currently a barrier. If you can get out of the house, finding a near-by counselor or support group can be a great first step. Click on the link below to find support through your local Brain Injury Association:
Or check with a local hospital website as they often offer monthly support group services.
- Making a new schedule – I outlined a schedule so that my patient’s wife could share some of the night time care burden with her son – for example, the son would cover “night duty” 2 nights a week.
- Exploring respite care. My patient gets benefits through the VA (Veterans Affairs) including opportunities for respite (‘fancy talk’ for getting a break). There are also opportunities through assisted living facilities, but prices can be steep. Sometimes, it’s about asking someone for help, maybe another family member or a friend that can step in for a few hours or a weekend to let you get some rest.
*with this option, it is important to only consider someone that can keep your loved one safe at all times*
Here are a few other caregiver resources:
No matter what, please remember:
It’s ALWAYS ok to ask for help.
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