Safety at Home
The location of a brain tumor, or the treatments required for it, often have an effect on physical functionality. The changes you see may be mild and minor in some, and may not last long-term. For others, especially those with a recurrent tumor, the onset of physical challenges may have greater impact. No matter where you are in the course of treatment, its always important to consider the safety of your home.
Because the hospital is set up with equipment that makes it easy to care for and transfer patients, caregivers often find it takes more energy to care for a brain tumor patient at home than in the hospital. Preparing yourself and your home to be a safe environment will enable you to keep both yourself and the patient much less prone to injury.
Kevin Svoboda, a brain tumor survivor and a physical therapist focusing on the needs of brain tumor patients, said,
Protecting yourself is one of the most critical components of patient safety. If you become injured or tax your body too much you won’t be able to help the patient.
As you care for yourself mentally and spiritually, caring for yourself physically includes safely helping the patient at home.
Modifying the home
If the patient is in the hospital recovering from surgery, you can begin to prepare your home during that time. If the patient is already home, you can make changes any time you or your care team thinks that home modifications are necessary.
“The caregiver can coordinate with the patient’s social worker and physical therapist (PT) or occupational therapist (OT) to learn what, if any, changes should be made in the home,” said Svoboda. “Not all care teams will offer this, so you may need to ask for this service directly.”
Some patients may benefit from in-home therapy, which is another opportunity to ask for expert help. When the PT or OT is in your home, he or she can see the patient within the everyday environment, evaluate it for safety, and make suggestions.
If you are unable to have a PT or OT in your home, another option is to share photos of your home with the patient’s therapists, who can make recommendations for improvements.
Modifications to the home don’t have to be permanent or expensive. If possible, the PT or OT will come to your home during this time to show you the changes you can make. He or she will look at potential issues such as:
- Rugs or other obstacles on the floor that the patient may trip over
- Stairs into the home and within the home
- Slippery floor surfaces
- Frequently used items stored below or above eye level
- Barriers to moving in and out of bed, to the shower, bath, or toilet, etc.
- Impediments to the patient moving in and out of the car
While the patient is still in the hospital, it is reasonable to ask the hospital staff to grant permission to have the PT and the patient come home with you for part of a day. This way, the PT can work with you and the patient in your home environment on everything from transferring the patient in and out of the car, to helping make changes at home.
Many big-box hardware stores have accessible home products for brain tumor patients, so ask the PT or OT for recommendations. Items purchased from a hardware store are typically less expensive than those purchased from a medical catalog.
Suggestions that the therapist may make include:
- Removing rugs
- Moving furniture
- Installing grab-bars in showers, bathtubs and near toilets
- Adding items such as shower seats, easier-to-turn sink levers, and touch lamps
Changes that can affect mobility
In addition to making your home safe for the patient’s recovery after surgery, several other physical side effects can also occur which can impact how patients move from place to place. This will vary individually for each patient depending on tumor type and treatment, and can include:
- Strength and mobility issues in different parts of the body
- Varying levels of paralysis
- Vision impairments
- Sensitivity to light and sound
- Lightheadedness and dizziness
Other factors to take into account:
- For many people, not just brain tumor patients, going from sitting to standing causes orthostatic hypertension, a rapid decline in blood pressure that can cause decreased blood supply to the heart, brain and muscles, causing dizziness.
- One risk with patients who have paralysis is that they compensate with other limbs or muscles and have a greater chance of injury – anything from developing tendonitis to breaking a bone. A PT or OT can help you and the patient create an individualized approach to moving.
- The vestibular system – the system that helps all of us balance – can be compromised by chemotherapy. Just as chemotherapy can cause the hair on the head to fall out, it can also destroy cells in the inner ear which help us keep our balance. Work with your rehabilitation professional to help the patient learn how to regain and keep balance during transfers.
Transferring the patient
There is no single way to help a patient move from one place to another. Some patient transfers will require minimal support; others may require more than one person. Transferring the patient will also depend on the physical and cognitive capabilities of the patient, the size and strength of both the patient and the caregiver, and the task at hand. For all caregivers, however, it is advised to take it slow.
If you feel you need help, it’s best to have a PT or OT assist you with transfers to create a method that is customized to you and the patient’s specific situation. However, there are a few general guidelines to follow:
Guidelines for transferring a Patient:
- Position the patient as close as possible to the place that you are moving him or her to.
- Carry on a conversation with the patient during the transfer. Sometimes patients help by letting the caregiver know when they can use their strength, or when something hurts.
- Make sure your own body position is not preventing the patient from getting to where they need to go.
Transferring in the bathroom
Bathroom transfers can be difficult because the bathroom is typically a cramped space which includes slippery surfaces. Options your PT may suggest include adding special tub or shower chairs, anti-slip mats and installing grab bars.
Transferring from wheelchair to car
Transferring from a wheelchair to a car takes practice, and again, it may take significant collaboration with your care team to develop the best way to move the patient based on his or her abilities, yours, and your specific care type. A few things to keep in mind:
- As with any transfer, move the wheelchair with the patient as close to the car as possible.
- People tend to hang on to car doors to stabilize themselves, but car doors move. Do not treat them as stationary objects.
- The back seat may be easier for a patient to transfer to than the front seat.
- Talk to the patient throughout the process to make sure that he or she is comfortable or has any ideas on how to best facilitate the move.
- Some vehicles may be better than others for the patient. One car may have a grab bar in just the right place. Others may have an easier time getting into an SUV than a sedan that is lower to the ground.
Taking the time to experiment with and practice transfers into and out of your car is a way to ease your stress level and lower the chance for injury.
Taking a walk
Walking with a brain tumor patient is an excellent way to get fresh air and exercise, but also presents challenges.
- Because of the brain tumor and treatments, there is an increased likelihood that the patient will experience dizziness when walking.
- Walking and balancing activities are heavily dependent on visual input. Since some people with brain tumors experience diminished visual capacity, it’s important to take it slow.
- Although talking is a natural part of going for a walk, you may need to limit talking, as the brain tumor patient may need to focus on their stability.
- Assistive devices can help, but make sure they are fitted appropriately. Do not borrow walkers and canes from others. It’s best to have them recommended and fit specifically to the patient by a trained professional.
When the patient falls
With brain tumor patients, it can be difficult to evaluate how serious a fall is. A bang to the head may not present any symptoms until hours, or days later. Patients who have paralysis or sensory loss may be more injured than they realize. Even if patients say they are not hurt, their brain receptors may not be able to detect the injury.
Because of all the unknowns, it is best to call for help if there is a chance the patient is hurt.
It’s a team effort
As caregiver, you are one member of a unique team that will work together to accomplish everyday tasks. You, the patient, and healthcare professionals such as doctors, nurses, rehabilitation specialists such as physical and occupational therapists will help you and the patient generate strategies to keep your bodies as strong and injury-free as possible while adjusting to the physical changes brought on by the brain tumor and treatment.