Caregiver Not So Caring

Enabling Series. Part II

By

Meena Dhanjal Outlaw

I’m sure at some point you have hired a service to your home.  It could be to mow your lawn or clean your house. If it’s a maid they perform a deep cleaning or a regular cleaning.  You pay them and then they leave.  Then, on closer inspection, you realize they have missed a spot or even an entire room.  You might even suspect something is missing, but have no proof.

Now, what happens if you are disabled?  You have found a person who you can actually afford and you agree they clean your home once a week.  Or, you have a home health aid, nurse or a care attendant who comes in every day.  This person assists in getting you showered and dressed.  Alternatively, maybe your care attendant is a family member.

As they are taking care of you, they say something.  In fact, what they have said is demeaning or belittling.  Maybe as they get you dressed they are being a little aggressive, or they are touching you a little too long.

What if you stay in a hospital and an attendant seems too friendly in assisting?

I believe that one of the hardest realizations of living with a mental or physical disability is when you have to give a part of your self up to the assistance of another to care for you.

When I had my spinal cord injury, I felt I had lost a part of my self-dignity.  What once was private wouldn’t be.

Shortly after I returned home from the rehabilitation hospital I hired a home health aid for the first six months.  She came highly recommended by a friend. She willingly trained under the direction of a professional at the rehabilitation hospital.              Everything seemed to go well, but as she helped me in the mornings she preached the bible and would say what happened to me is because of a spiritual warfare.  There were times while assisting me in the bathroom I would feel my spirit dip with some of the things she let slip out of her mouth.

I was only two months post injury at this time.  I was still in shock.  My mind was playing catch up and my spirit was fragile.  I had lost my independence.  Eventually, I spoke up to my mother about what was happening and she took over.  My mother still needed the aid’s help in lifting, turning, or dressing me, but I was never alone with the nurse again.

After a year my mother returned home and I was able to take care of myself.  Before she left, we interviewed nannies to help with the children.  The nanny would live with us and also fulfill light housekeeping tasks.

Before I finally I settled on one nanny that became a part of my children’s life, I had gone through a total of six nannies, three of which were abusive to me.  One pushed me out of my chair, another wouldn’t let me hold my baby, and the last one quite literally came at me with an open handed slap to my face.

I had to toughen up and really learn what it means to be my own protector and advocate.  I could no longer be quiet Meena.  Instead, I found my voice and made sure it was loud when I needed.

It was after that I began to make sure that my children and I were safe with whoever entered the sanctity of our home.  I refused to listen to those who felt I was being unreasonable.  One thing I knew was wrong from right and I wasn’t going to risk the safety of my children or me.  In addition, not all family members were supportive.

Abuse can happen verbally, psychologically, and physically.  Any form of abuse is unacceptable behavior and you must know that you cannot accept this is a part of your fate for living with a disability and requiring help.

As I learned, just as there are bad caregivers and nannies there are also very good ones.  I just had to be brave enough to speak up so that I could find the good ones that I still am in contact with even though I don’t require their help anymore.

Before I hire someone I conduct a thorough background check.

This is how I can control who I wish to give me loving, faithful and safe care.

For further information on caregivers contact Texas Department of Aging and Disability Service. www.dads.state.tx.us/services/crs/abuse.html.  Phone number for abuse victims (800) 458-9588.

ETIQUETTE 101

Manners are Universal

By

Meena Dhanjal Outlaw

We cannot control how others act but there are times when I venture out to run my errands or drop my kids to school when I just wish people would remember that manners are universal.   I confess that sometimes I daydream of having a PSA poster that I could post around the entire Houston area outlining some guidelines for proper etiquette when encountering a disabled person.  This is a sampling of what I would post:

If you see a disabled person in a wheelchair, particularly an electrically powered wheelchair, and you think that you can just walk right in front of them, please think again.  It is important to be aware that my power wheelchair doesn’t stop like a car; more like a cross between a car and a boat.  I have to wait a bit before it comes to a full stop, and you could get run over.

While shopping in crowded stores, and getting fixated on all the items you came there to buy, I think most people tend to remain somewhat aware that a child could be behind you.  Similarly, please pay attention to the fact that there might be a person in a wheelchair behind you.  I don’t have to get too close for you to turn around too quickly and accidently fall on me.

I implore all able-bodied people, as well as a few members of our disabled community that I have encountered over the years, to remember that the striped no parking zone next to a disabled parking spot is exactly that:  a no parking zone.  Don’t park your car there, even for just a few minutes to quickly run inside a store, because if I pulled my ramp down your car will get scratched. As a person who now requires the use of a vehicle with a ramp to get in and out of my vehicle, I can honestly attest to the fact that I truly do require that full amount of space to be open.  To be clear to anyone who might still be confused, the striped area between disabled parking spots is indeed a NO PARKING zone.

While I’m on the subject of parking, I wonder sometimes if many people view disabled parking spots as a privilege for the disabled.  I can tell you definitively that these spots are not a privilege for us.  Rather, they truly are a necessity, which we need in order to safely get around in the public community that we all share.  So, if you are an able-bodied person who has to load or unload, please find another regular spot to load and unload to your heart’s content.  Disabled parking spots are reserved 24/7/365 for disabled members of the community, who truly do require these spots in order to safely be a part of society while working, shopping, or just going out to eat with our families.

If you see that my van is parked in two regular non-disabled parking spots, most likely it is because all of the disabled parking spots are already taken. Therefore, please don’t park right next to me in close proximity hoping you are trying to tell me something.

When it comes to staring, remember what our parents taught all of us as young children:  it is impolite to stare at anyone.  If you are curious and really want to know about me, or my wheelchair, just ask and I will be happy to speak to you.  However, blank-eyed stares are just creepy and tend to make others uncomfortable.  As a person who has lived in a wheelchair for over fifteen years, I know from personal experience that people stare at us for a variety of reasons.  Some are curious because they don’t encounter many disabled people in their lives.  Others stare because have disabled friends or family members who don’t feel as comfortable being out in the general public.  Unfortunately, I also know from personal experience that there is a thankfully very small segment of society who glares at disabled people because they think that wheelchairs in a store are a nuisance.  To these people I offer up an earnest piece of advice:  please get over yourselves.  I have the exact same rights to be in the grocery stores, pharmacies, restaurants, or post offices that you hold so dear.

If you are a nurse and see me bring my kids in for a check up in your office, hospital, or urgent care, do not automatically assume that my children are neglected or abused.  Most likely they are even better taken care of than most of the other children you have seen that day, and you will just be wasting your time and the government’s money by automatically calling CPS to sit me down and question me on my method of raising my children.

Just because I am disabled doesn’t mean I cannot have babies and, therefore, my pregnancy belly is as miraculous and beautiful as any other.  If anything, my child is truly blessed and favored to be with me as their mother!

If you need a reminder of why I should be treated like anyone else, here are some other tips to help you decide whether I deserve your respect, too:

I can work; I just might need a higher or lower desk.

I am educated.

I pay my taxes.

I take my garbage out every Monday and Thursday, just like you.

My children don’t see you as an opposition as they don’t see me as disabled.

In conclusion, I’ll offer up this one last suggestion:  Maybe we should try to replicate the innocence of a young child’s vision when it comes to treating people equally.

Helping Your Child Cope With a Crisis

Coping Skills for Children

By

 Meena Dhanjal Outlaw

Fifteen years ago, after my spinal cord injury, I changed my type of parenting for my then three-week-old son, and my three-year-old daughter.

My daughter, who witnessed my fall from the balcony, also felt a further blow when her dad and I divorced shortly thereafter.

When she was born she was a very quiet, yet jolly child.  However, after my accident, she became guarded.  When her dad left she completely refused any form of affection from me; not even responding to me saying, “I love you”.

When a child goes through a trauma it is often stated that they are resilient and will get through it, however, I disagree.  I also know that early on she needed therapy.  Unfortunately, finding the right type of therapist, and being able to afford it, was nearly impossible.  Eventually, a priest referred me to a therapist who, in addition to treating my daughter, also treated me for Post-Traumatic Stress Disorder, and provided pre-marriage counseling.

For children, therapy dynamics change compared to adults. Children have a hard time comprehending and deciphering emotions.  Without treatment, they do understand sadness or loss and lack vital coping skills.

Everyone goes through crisis regardless of his or her disposition.  Whether it is a child or parent that is disabled, or a relative coping with a loved one who could have cancer, the primary focus is to realize there are key coping elements to which we must pay attention.

I also want to be clear that while therapy is enormously useful, so to at times are the use of anti-anxiety and anti-depressant medications.  While some patients only need it for a short time, there are just as many patients who require them on a long-term basis, and this is nothing to be ashamed of. If anything, I commend these people for having the courage to take a stand and help themselves as I did!  Now my moods are balanced and less scattered.

We often guide our children to make good choices but if they haven’t processed the trauma the choices they make will become self-destructive.  The longer they struggle, the more profound the destructive behavior.

Presumably, when we adults have an injury that debilitates us, a sickness that further impairs us, or even a mortality issue, we are already supposed to be equipped with chemical balance within to cope, yet, most often this is not as true.

Taking care of my two young kids after my injury was the hardest thing I have ever done.  I was less than six months into my paralysis before I had to think like a soldier, and I haven’t stopped. Some have told me that I am still in survival mode fifteen years later. I disagree.

Over the years I’ve dealt with things one step at a time.  Firstly, I became functional and self-sufficient, and then I bought a house and hired a nanny.

So, how do we help our children cope and what are the resources out there for us parents who also have to watch our pennies?

Jenna Luzzo and her partner, JJ. Wett started a counseling business where they are available by phone or the internet nationwide. They are also HIPPA compliant, therefore, confidentiality still applies.  They counsel all ages and charge as low as twenty dollars for a fifty-minute session.

They work on cognitive behavioral therapy with adults.  This is where they switch negative thoughts to positive ones and keep them there.

For children, they implement trauma-focused cognitive behavioral therapy.  For the first couple of months they focus on how the child feels when talking about a traumatic experience.  Then they continue with cognitive behavioral therapy so that they too can develop the ability to switch the way they perceive negative to positive thoughts.

 

Jenna was diagnosed with spinal Muscular Atrophy Type II at nine months, which is a form of Muscular Dystrophy.  From two years of age she began using a wheelchair.

JJ and Jenna focus on providing accessible and affordable treatment with upmost importance to a person’s ability to really heal from a crisis.

Jenna says, “It is all how we are able to process situations. Some of us are equipped where as others are not”.

As a young child with a disability this therapist understands what it means to see how resourceful her parents have to become. Where they lacked resources they made up by finding support groups and a community of children with a similar disability.

So, here are some tips that can help you decide if and how to get your child help:

 

  • Watch to see how they are processing the trauma. If they are isolating themselves or staying away from affection loved ones, they are most likely in fear of getting hurt.
  • Do they understand what happened and that it is not their fault? If they seem despondent or unapproachable then are not coping.
  • Early intervention is important following trauma.

In my case it was hard to find anyone that could even understand the magnitude of the changes

within my children and me.

  • Having a therapist you can relate to is as important as one you can trust.

 

We have all heard the saying life is what you make it, but when something bad happens we aren’t always equipped to handle the emotions.

I attribute my positive thinking to the therapy and activities in which I’ve been involved.

One thing of which I am certain is that we all have a talent.  Sometimes we just need a little help to clear the clutter and recognize them.

 

http://www.sweetserenitycoach.com

 

Jenna Luzzo, M.S.S.W., LMSW

To schedule a free consultation with Jenna, please email: jenna@sweetserenitycoach.com

 

J.J. Wett, M.S., LMFT

To schedule a free consultation J.J., please email: jj@sweetserenitycoach.com.

Loving Hovering Caregivers

Enabling Series. Part I

By

Meena Dhanjal Outlaw

One Sunday morning during service at the church I watched as my five-year-old son walks down the aisle along with other children to place his dollar bill in the offering basket, hug the priest, and walk back to daddy who was standing exactly where my son had left him.  It made me suddenly remember some conversations I recently had with people that felt frustrated at their caregiver who also happens to be their parent.

In the first year after sustaining a spinal cord injury, my mother and brother stayed with me.  My mother took care of me as if I were her baby again, even though I was twenty-nine years old when I had my injury.  I remember being so grateful it was she that was assisting me with my personal care.

My brother was a certified kinesiologist and had studied physical therapy even though his business is technology.  He told me he would leave only when he knew I was functional again.  A year later he returned back home.  My mother, on the other hand, had trouble letting go.
One person mentioned to me recently that he is never alone and has no space. Through his parents’ help he also feels smothered, but speaking up makes him feel petty knowing how selfless they have been in helping him.

Even though I empathize with my friend I too have trouble deciding just how exactly we should handle our loving caregivers that hover.  The other thought this brought to my mind is the difference between helping and enabling.

How can we make our loving caregivers not feel dejected when we find ourselves not needing help as our independence grows?

Personally, I felt guilty that my growing independence was not erasing my mother’s worry.  Additionally, she was returning back to an entirely different country.

Another person I spoke to had been diagnosed with a progressive neuromuscular condition.  At thirty-five years old she is realizing that she will need help for the rest of her life.  However, after some time, her medication caught up and her constant tremors began to subside. Now she is able to brush her teeth and hair independently.  Much to her frustration, this hasn’t deterred her parents from watching her as she was performing these simple tasks.  On the contrary, her parents didn’t want to leave her alone in case she dropped anything knowing she wouldn’t be able to pick it up as easily.

The end result is that as her frustration grew her parent’s confusion and hurt increased.  After all, they have left everything to help her.

For most of us that have experienced this situation, we also respect the phrase that communication is the key.  However, in certain circumstances, it is difficult to get our point across, especially when we feel our most vulnerable.

I am forty-seven years old and trying to tell my mother what might be best for me is still a challenge, but it also makes me recognize something familiar.  It is the strongest loving caregivers that will challenge us.  Had it not been for my mother’s constant ‘hovering’ then I beg the question, would I have sought independence as quickly as I had?  If anything, it pushed me to overcome the thought that my limitations stop me from achieving self-sufficiency.

I never knew what it was like to have a ‘hired caregiver’ until I got sick again with a neuromuscular condition.  I interviewed many caregivers.  The one I hired happened to be a lady that cleaned my house for years.

Sixteen years ago my mother sat with me interviewing nannies to assist me in taking care of my toddlers after my spinal cord injury. This time, I was married again and to someone who quite literally rolled up his sleeves.  Nevertheless, my mother sat with me as I interviewed the caregivers.  When we decided on my housekeeper, I remember my mother had visibly relaxed before my eyes and it was because she knew this lady cared about me.  She flew back home knowing I was safe.  It took me a second time in mastering independence to really comprehend that even though my family is a continent away they are also only a phone call away.

Through our own pain, we can forget what goodness we still have around us.  Human nature calls us to love and be loved.  Therefore, even through our depths of despair just remembering that one blessing can allow us to ride the waves of pain and before we know it, we are living through our limitations without losing sight of who helped us get here.

For further information: www.aoa.acl.gov/AoA_Programs/HCLTC/Caregiver/

http://www.griswoldhomecare.com/blog/new-laws-may-help-adults-with-disabilities-receive-better-care/.

The Best You Possible! My Spouse Wants to Leave

Where Do I Go From Here?

By

Meena Dhanjal Outlaw

It is a fact that most marriages do not survive after a spouse becomes disabled, whether from injury or illness.

As someone who had experienced this reality first hand, I can tell you that there are several emotions one goes through when this happens. First shock, then anger, followed by a sense of abandonment.  The shock is from the initial idea that your spouse really doesn’t want to be with you. The anger is the realization that the vows you both took meant nothing to him/her.  Lastly, the sense of abandonment comes from the fact that you are now feeling unlovable.

Nonetheless, I implore you to see past all this and get over it quickly as possible!

I believe that life is truly about choices.  After getting divorced I had to relearn many things about myself, and mostly through my own mistakes. One, in particular, is dating.  We are targets to some for many ugly reasons, but the key factor I drew from was that if I didn’t feel good about myself then how will someone else treat me well?

I took time alone and really gave deep thought into my own self-worth.  I started by writing down a list of twenty things I wanted in someone and twenty things I didn’t want in someone.  I didn’t date after writing that list; in fact, I didn’t do much of anything.  However, this change of pace was invaluable as it allowed me the opportunity to properly manifest what I knew I deserved!

I became determined that the man who was going to eventually be with me would have to be unique to see past my limitations.  Yet, sitting in church one Sunday, the priest talked about how we are supposed to pray for the spouse God has already pre-selected for us.  He even pushed further and said we must pray this for our children as well, no matter how young they are.

Two years later I met the man to whom I am now married, and he is more than what I could have even dreamed possible for myself!  Yet, he is exactly how I am for myself:  healthy, confident, wise and courageous.

Now to those of you who are still married yet struggling. I ask that you try hard to work it out. There are so many therapists these days that work very well in picking the problems between a couple and helping them overcome them.  I have seen many couples become even stronger and more loving after a crisis such as mine.

I also challenge you to seek counsel from your church and from people you know that still treat you well regardless of what happened. Unfortunately, by now you have likely found that there are many friends who cannot handle your disability either and simply disappear.

What I am telling you is that it is okay.  For them to stay means they will hold you back in finding the best you possible.

I will also say to you that disabled is not a hindrance unless you allow it to be. It is all in your mind, and you can achieve anything you want.

Below is a link to an article, which I loved. It’s about what happens after a marriage suffers from a crisis, illness, and injury. I encourage you to read it, and I pray that it gives you hope for your future.

 

Finding Love After Loss: 7 Steps for Moving Forward