Anyone who has ever had to look for personal assistants can tell you that finding a good personal assistant is very difficult. As Chris Lenart discussed in a previous post, “caregiving is a job where a few people can do well,” and anyone who decides to be a full-time personal assistant has a lot to consider. The lives of people with disabilities wouldn’t be the same without them, and many of us – even the families of those with disabilities – come to rely on them greatly.
However, how often do we stop and think about who is taking care of them? Sometimes, people who take on roles as personal assistants end up with “personal assistant burnout” – a state of physical, emotional, and mental exhaustion that comes from just giving too much of themselves to the people they care for. It’s a sad reality of working in the field, and family members who take on these roles are even more susceptible. It’s important that we recognize the signs and symptoms of burnout to ensure that the quality of care our loved ones receive remains on point:
The Signs and Symptoms of Personal Assistant Burnout
Ageucate lists the following as some of the most common signs of caregiver burnout:
Anxiety, depression, and irritability
Feeling tired and run down
Overreacting to minor nuisances
Drinking, smoking or eating more
Feeling increasingly resentful
If unaddressed, stress and burnout can impact not just the quality of care you give, but also your relationship with the people you care for. You may start to feel powerless, and stuck in a cycle or a role you didn’t expect, helpless to change things. It may continue to drain your emotional reserves until you start to grow resentful of the responsibilities you have taken on. So, here are some ways to combat caregiver burnout before it gets out of hand:
Fighting Personal Assistant Burnout
Everyone deals with stress differently, but there are some universal ways to help you deal with the stress of being a personal assistant. HelpGuide.org explains that practicing acceptance and avoiding the “emotional trap of feeling sorry for yourself or searching for someone to blame” is one of the best ways to get over the feeling of hopelessness. It’s important to embrace your choice to become a personal assistant and think of the ways that what you do has made you stronger and a better person.
It’s also extremely important to not neglect your own well-being, and as such, you shouldn’t let your role as a personal assistant take over your life. Remember that it doesn’t define you and that you need to invest in other things that give your life meaning and purpose. You should also get enough to eat, enough exercise, and enough sleep. Parsley Health details that in order to reduce stress, you need to “flex your parasympathetic nervous system, which is engaged during rest and relaxation and helps to calm your body and your mind”. They recommend incorporating more yoga and meditation into your daily routine to help your body and your mind deal with the stress.
Lastly, as Hospital News emphasizes, you need to recognize that you aren’t alone. Even though it may sometimes feel like the burden lands squarely on your shoulders, you aren’t alone on your journey as a personal assistant. Talk to someone you trust – be it a doctor, a friend, a family member, or a therapist – to see that you get the help you need.
Many devices offer a range of options to suit an individual’s needs and to minimize the restrictions on their day to day life.
1. Medical Guardian
This is one of the highest-rated alert
systems at present on the market. With pricing starting at $29.95 a month, this
device supports over 200 languages and doesn’t require a long-term contract.
It’s perfect for short-term medical conditions or people who don’t want to
commit to a contract. The only commitment is a 90-day service agreement.
Depending on the plan you choose, the
device can detect falls either at home or outside, and alert the emergency
numbers and family members on a contact list.
With an optional mobile plan to use the GPS, the power lasts for up to 32 hours per charge and, with easy installation to boot, it’s clear to see why this is such a popular alert system.
2. LifeFone At Home
One of the great things about this system
is that there is no need for a landline with the home cellular package, which
starts at $30.95 a month. This is perfect if you’re reasonably able to get
around the home but tend to struggle when out and about. Otherwise, you can opt
for the Home and On-the-Go package for a little more assistance.
You can also subscribe to extra services such as daily check-in calls, medication reminders, and location services.
3. Bay Alarm Medical + GPS Medical Alert
The monthly subscription for this starts
at just $19.95, with no long-term contract required and with monthly, quarterly
or semi-annual payment options to choose from.
If you’re looking for a medical system for a loved one with dementia or
Alzheimer’s disease, this device can send you (or another contact) an alert if
they leave a certain area, making it easier to find them if they happen to get
lost or become disoriented.
4. Mobile Help
Mobile Help is another popular choice for
medical technology. With coverage in all 50 states and an A+ rating from the
Better Business Bureau, this wearable device offers two-way communication, a 1000-foot
range from the base unit and up to 600-foot range outside the home.
Mobile services are optional for extra
peace of mind when away from home. GPS tracking helps to locate the wearer if
Like many of the medical devices mentioned here, the wristbands and pendants are waterproof. The monthly charges vary depending on the package but are quite reasonable with several payment options. Fall detection is available too, although at an extra charge.
5. ADT Health
While rating a little lower than some of the other devices, this is still A+ rated – and from a business that has operated for over 140 years from around 200 locations across the US and Canada.
Home temperature monitoring is included
too, and panic pendants are optional. While some features are limited, there is
the option to pick and choose from available services to match your exact
For any of these or similar devices, it’s
always best to check the prices and options to suit your needs. Some are easier
to use than others, but they are all designed to get help easily and therefore
will be easier to use than most technology, even for technophobes.
Physical activity and exercise have been an important aspect of cerebral palsy treatment plans for several decades. However, it is only in recent years, that researchers realized the importance of strength training for people with cerebral palsy. Studies indicate that strength training has the potential to improve several aspects of life by increasing mobility and strength. With cerebral palsy month just around the corner, it is fitting to take a closer look at how strength training can help people living with cerebral palsy.
The Benefits of Strength Training in People with Cerebral Palsy
Reduces muscle weakness
For people living with cerebral palsy, muscle weakness of the arm and hand can make it difficult to complete everyday activities such as getting dressed, bathing or even using cutlery. Furthermore, this muscle weakness often co-exists with spasticity (stiffness) and dyskinesia (involuntary muscle movements). Similarly, muscle weakness of the legs can make it difficult for a person to maintain their balance and walk. A recent study on the effects of strength training for children with cerebral palsy concluded that a combination of progressive strength training with task-specific training can reduce muscle weakness. A similar study found that task-specific strength training for children aged 4-8 years with cerebral palsy resulted in improved strength that was maintained over time.
Increases in joint strength
The amount of muscle is directly proportionate to the strength of the muscle. Since people with cerebral palsy have less volume of muscle, they have less strength. Orthoses are often used to provide joint stability but this can have a negative effect in the long run. For instance, researchers found that ankle-foot orthosis can provide stability of the ankle but it can lead to disuse weakness as it restricts the movement of the ankle joint. Strength training which focuses on the hip extensors and flexors, the knee extensors, and the ankle plantar flexors increases the strength of the joints of all the targeted muscles. Other studies have found a correlation between walking speed and walking endurance and lower-limb isometric joint strength.
Improves walking ability
Children with cerebral palsy have about 36% to 82% of the muscle strength of typically developing children. This is associated with muscle weakness in the lower limbs which results in decreased walking capacity. A study on improving walking capacity through resistance training found that resistance training with exercises at high movement velocities provided significant improvements. The children in the study showed an increase of 13% in their walking velocity and walking capacity increases ranged from 13% to 83%. The results of this study indicate that 3 sets of 6 to 8 repetitions at maximal effort, 3 times a week for 14 weeks can help to improve walking and sprinting performance in those with cerebral palsy.
Increases gait function
Spasticity or contractures of muscles cause gait deviations which increases the energy requirement of walking. In fact, children with cerebral palsy expend as much as three times the energy required for walking as compared to their typically developed peers. Multiple studies show positive effects of strength training on gait function in children with cerebral palsy. One study found that strength training 3 times a week for 8 weeks increased muscle strength, stride length and Gross Motor Function Measure (GMFM). The training focused on the lower extremity muscles and used free weights, rubber bands and body weight for resistance.
Provides psychological benefits
Most of the discussion on cerebral palsy focuses on physical disability and not on the psychological impact of this condition. 25% of children with cerebral palsy exhibit behavior problems such as hyperactivity and anxiety and are prone to conflict with their peers. Children with cerebral palsy are also more likely to have a strong emotional response to a new challenge. Similarly, teens and adults with cerebral palsy are at a higher risk for depression and anxiety disorders. Participants in a study on the benefits of strength training for young people with cerebral palsy reported psychological benefits from their 6-week program. This included feelings of increased well-being as well as improved participation in their school and leisure activities.
Strength training offers a variety of health benefits but it is important to keep in mind that each individual is unique and therefore has unique requirements. Researchers point to the fact that children in their study have a range of responses to the training. While some have marked improvement in strength and endurance others have moderate improvement only in strength. This is why it is important to ensure that each individual with cerebral palsy receives the type of treatment that is most effective for him/her. Therapy and counseling can help people living with cerebral palsy stay mentally and emotionally strong through the many challenges they face. Cerebral palsy support groups and forums can also help individuals to connect with others who are in similar situations and can provide practical advice and guidance.
When you fly and have several stops to get to your final stop, you feel all dirty and need to change. If you are an able body, you can change in the bathroom without any trouble. When you are a person with a disability, it is really difficult to change in a bathroom stall. In a bathroom, there is usually a changing table for little children, so their parents can change them easier.
Is Adult Changing Table Possible?
Can this be scaled so that a person with a disability can be changed easier? The answer is yes, and Arizona’s government has passed a law on May 7, 2019. This law requires a public building to put an adult changing table if they are building a new building or are remodeling that cost $50,000 or more.
People who have disabilities are human beings and not dogs. They don’t want to be changed on the floor in a bathroom. I hate to sit on the toilet, so I can’t imagine laying on the floor. I know that they try to keep it cleaned, but they cannot clean after someone goes to the bathroom.
A Mom’s Fight
I never thought about this issue before since I don’t need to be changed and I would say most people never thought of it either. How I heard about this was through a mom who I have met at the TASH conference in Arizona. She was the one who worked with the governor to get this law passed. She has a teenage daughter who has Cerebral Palsy and has to be changed.
Some people would say that this law is silly, but I have a question for you to think about. If there is no adult changing table for your teenager or yourself, would you take them out in public knowing that they might have to be changed on the floor of a bathroom? You might say that you will stay at home to be safe.
Is it fair for your teenager or yourself? I don’t think so because you have the right to go out to enjoy life. Your teenager or you should not feel sad that you have to be changed. It is a part of life and I know it feels awkward, but you should not stay at home.
Requirements of a Changing Table
The requirements for a changing table are the following:
Must be able to hold at least 350 pounds
Have to be placed where the caregivers can safely and have the room to help the individual
Must be designed to accommodate people with disabilities, children, babies, aging population, and the individuals who use a catheter
Doing the Right Thing
This is not a long list of requirements, so this should be easy to provide, but there will be some people who will say it will cost a lot to money. My reply for them is so what because if you do the right thing, you will get more people coming into your place. It is a wise decision to spend a little more money up front and get a load of money later. It is because people will come back over and over. That is why good companies survive and bad companies do
It is so fun to know what your I.Q. is and we sometimes ask our friends what their I.Q. is as a joke. What are these statistics for and does it have any importance for how smart we are? I will answer the latter question first. The answer is no. There is no evidence that shows how smart someone is. If I were to make a new test to know how smart someone is, it will be good as the regular test is.
Who Developed I.Q.?
Now for the answer for the first question, it was used so Hitler could get rid of people with disabilities. We only think he was targeting only Jews, but it is not the case. It was used to weed out all the people who had an intellectual disability. There is a great movie called “Intelligent Lives” and it is on Amazon Prime. It talks about how I.Q. got started and shows how people with intellectual disability can become an asset to society.
Partners in PolicyMaking
We often live in our own world and don’t see what is happening. For those who are not getting my newsletter, I am in a class called Partners in Policymaking which every state has. This class is for people with disabilities and parents who have children with disabilities. It meets for two days in a month for nine months and this past weekend we had the class. The topic was education. One of the subjects was on Positive Behavioral Interventions and Supports or PBIS.
What is PBIS? It is a framework for the school to adopt and it is mainly for the staff. Itfocus on the behavior of all the students. Many students don’t need help in school, but some do. The teachers are trained to help the students before they have a meltdown. The reason why they want to catch it before the student has the melt down is because if they can help the student early enough, the student can be calm down faster. Otherwise, the student cannot function in class.
Example of How PBIS Helps
One student had stress and some days they were in a good mood and some days they were in a bad mood. The school figured out that it started first thing in the morning. What they did was every day the school would called the students at home to see if they were having a good day or a bad day. If they were having a bad day, they would see someone who could calm them before going into class. As the year went on, the student learned how to calm themselves without needing help.
Like I said that this framework is for everybody in the school to adopt. There are three tiers in PBIS and each tier aliens to the type of support students need. Tier one is for everyone. The school is structured to have positive expectations and behaviors. One thing that got to me is they focus on is respect for everyone. To me, this is really lacking in this country.
Each tier gets smaller as the tiers increase. So, when they get to the third tier, the number of students is much less. If a student is in the third tier, there is a multi-disciplinary team for each student. The student has a behavior support expertise and formal fidelity and outcome data are collected. In the third tier, there are usually 1-5% of the students. This number of students is something that the school can handle.
Think Outside of the Box
The question that comes to my mind is why don’t more schools have PBIS? This framework is for everyone. Yes, this works for students with disabilities but let’s think outside of the box now. There is a lot of bullying at school but there are many unwanted shootings in schools. To my mind, PBIS might be one way of stopping the violence in schools. I don’t mean it will be the final answer, but let’s try something that might help everyone. Students need the support that their parents can’t provide and this might be one way that can save lives.