Saturday, March 17, 2012

What Is The Cost? : a view

There are three main conditions in my home: 
Poor, Caregiver, and Disabled
These on top of the normal condition: Human
When it all gets tallied up, what is the true cost?

Poverty: "There’s no question that in past 50 years the divorce rate in the U.S. has increased. But what really affects divorce rates? 24/7 Wall St. analyzed a report just released by the Census Bureau that tracks marital events of Americans in 2009. What stood out was the high correlation between poverty and divorce." Article

Caregivers: "More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one." Caregiving in the United States;
National Alliance for Caregiving in collaboration with AARP; November 2009

"Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI)."

Disability: "Parents of children with special needs often feel isolated, overworked, angry at insurance companies and frustrated at the therapy and appointment schedule which calls for so much WORK with their child- leaving little time for cuddling the child or even just playing together."

"Mental health is how we think, feel, and act as we cope with life. People with disabilities report higher rates of stress and depression than people without disabilities. There are different ways to treat depression. Exercise can be effective for some people. Counseling or medication also might be needed." Article 

Human:  "For the average person it's a critical point for preventing stress related illnesses from developing and for those already living with health problems it's essential for managing their condition and preventing it from making things worse.

Stress occurs when the demands in our life exceed our ability to cope and it effects our emotional, physical and spiritual health." Article

My Thoughts: 

Poverty: When you are struggling to make ends meet there are many areas of your life that get attacked. Marriages are fragile creatures when they are stretched thin by emotions like loss, a sense of failure, hopelessness. Children suffer in many ways from the shorter tempers of their parents to the less health in their meals. You spend so much time trying to make it through that you can easily forget to enjoy life.

Your health takes a backseat to what ever else needs to get done. You have to pay the electric so there is no hope in getting your tooth fixed. You can't get your medicine because it costs $678 for a months supply. The kicker is that if you don't take your medicine, you can't work because your condition will only get worse, and the cycle won't stop. Add to the fact that you may not be eating, may be over tired, drained, and still trying to get what you can, done.

The cost: Don't get me wrong. The poor can be and often are happy (read why here) but they have to work at even that. But there is more noticeably crime among the poor, more preventable death, less personal achievements, less happy homes, and many conditions that don't have to be but that are hard to overcome. People don't always understand that it isn't easy being poor.

Caregivers: A caregiver is working every moment of every day. They don't just do the everyday chores like dishes and balancing the checkbook.  Caregivers have appointments to make, calls to return, diapers to change no matter how big that patient, appointments to go to, time to balance, slots too full, education battles, medications to give, treatments to administer, meals to make, discipline to figure out, fears to calm, tears to wipe as well as snot, and a bunch of little things that they have to figure out that most people don't even realize can be an issue. (did you know that the lighting in some stores can cause my son to have seizures while the lighting in other stores are fine?)

It doesn't matter if the disability is autism, Alzheimer's or some other special need, it is work. It is often thankless work. There is a high investment that often gets buried under the social smile caregivers wear. The rewards are the small moments of clear, simple joy that the "patient" creates.

Caregivers are supposed to be in balance with their roll. It is rare, even in their own circles, for someone to say that it is all right to melt down like an autistic child when there has been just one too many emergency moments in the last 24 hours. The offer of surface support is there at times, but not so much the help carrying the load kind.

To be honest, a lot of full time caregivers don't share well. they have a hard time handing over the ones they look after. They know the little details like how to avoid a total meltdown in an autistic child, how to convince the Alzheimer's patient to take their medicine, and which television program makes the cancer patient smile. Controlling? Maybe. But it it's their way of being sure that the person they care for is safe.

The cost: Caregivers get drained out, frustrated, and are stretched to the max. If they have a support system, they are better off because they can get help managing some of the extra stuff piled on. They may love their "job" but it takes a toll. Even the caregivers health can suffer. You often put yourself second and wait too long to get things taken care of. Relationships suffer when you direct your attention to one person so much of the time. You have to share that attention with the others which leaves you even less for your self. 

Disability: Some people have disabilities that are in your face obvious. Others have mental disabilities that carry no outward appearances. Some disabilities hide deep inside but cause problems in every area of a person's day to day life. How many times have you wondered why that well looking person has a handicap tag for their car? How many times have you questioned the kid in the stroller? Why does that 20 year old have a cane?

Mentally, people in general get drained and worn out, but when you are facing a disability the toll can be greater and harder to recover from. There are things you worry about that aren't in the "normal" person's thoughts. They worry about to bring to sit on while watching the parade. You worry about if you will have a way to see, if you will need your cooling vest, and if the medication is reactive to the sun.

Money is a constant concern. Balancing wants and needs on a fixed income that often doesn't cover the needs, can be very hard on people at their best. There is paperwork that has to be filled out, doctors to chase, tests to be run, and days when you feel like doing not a darn thing.

The cost: You can often hear the question "Is it depression causing the illness or the illness causing the depression?" among the disability circles. Not all family members and loved ones can stick it out and watch the disabled person battle through it. Isolation can set in and that lonely lost feeling can make it so one doesn't even know why they bother to fight.

My Point:

No one has it perfect but adding just one disaster, one illness, one disability, one loss to the life style and it can forever change how life is lived. Make any struggle into a day to day battle and tempers, budgets,  and mental health all suffer. It adds up like a building storm until it lets lose of all it carries. The dam will break but the amount of damage will depend on the support system that is in place, the recovery options and the personal strength.

You can help by not making it worse in words and deed. You can ease the load carried by the caregiver, disabled, or friend in whatever way they need. Bring them a random smile and a bit of comfort. If you don't know what they want or need, ask. You may be surprised by an easy answer of "dinner" or an hours rest.

A Request:

I know that I ask for help with the bills and with Rowan's needs but today I ask for another person. Read my friend's story here and do what you can, even if it is just a retweet or a like. Thanks!

Now to my own needs:

Rowan needs a $60 pair of shoes to go with his new knee high braces. I pick them up in about 3 weeks and could use some help paying for them. I am selling items at CafePress and Zazzle. Please see the links on the side bar -----> over there. I can design something for your cause if you would like, just let me know and I'll see what I can do. Or if you can think of a slogan you would like to see on a shirt.... I only make about 10% on them so if you want to more directly help, I have a Tip Jar over there too. I also have a direct link to the Puzzling Piece iPad Challenge site. (Read more about that here and here)

I appreciate all you do even if it is a simple read, a comment, a little share or help.... Just you being here means a lot. Thank You and find a smile!

Tuesday, March 6, 2012

Special Manners 101: Dog Seziures Are Not Child Seziures

"Yes, I know what seizures are because our dog had some before she died"

O-Kay.... Maayyybbbeee I am a little sensitive about the "I know how it is because...." comments I get from folks who have no idea what it is like to wonder IF your child will overcome whatever the issue is, live his life, or be a well rounded adult. But Really? Comparing a scary, choke filled, breath pausing, long lasting seizure of my young child to that of your dog is at the very least insensitive.

And it isn't just that. You name anything and someone is sure to have a stupid comparison that has little the issue at hand. Or people often say things like "but he looks fine now" or "it could have been worse" or other minimizing pat responses.

Parents or caregivers that are mentally, physically, and emotionally invested in the patient already know what they can know about the condition and really wish they knew how to make it all better. There is no simple answer from that article your friend's sister's neighbor's sitter found online on a friend's Facebook page.

Special Manner #108: It hurts caregivers to have their worries and pain reduced by thoughtless (even if well meaning) comments and generalization.

Please remember that no illness or condition is the same and neither are the answers. Be aware of the way you show what understanding you have in a respectful way that doesn't belittle the persons, their condition, or what they and their caregivers go through.

Really, if you haven't felt that helpless feeling that a parent has when holding their child through some horror that they can't fix or ease away, you have no clue. And if you have, then you understand that your pain doesn't make someone else's any more or less painful. It is what it is for each person, personal and deep.

Balance your words on the scale of what you would want to hear or need to hear.  Support and understanding is wonderful but don't try to compare or minimize. It's easy to offend someone with open wounds, so if you misstep don't take their hurt and anger as an attack but as a defense. You can make it better by listening, really listening, and then forming a response that shows you really understand their side if not their lives.

It is hard to watch someone you love hurt, struggle, and it is wonderful to see them overcome. The people doing the watching love to share the good but sometimes they need to let out the bad and need someone to hear them. It makes life better for them, it makes them stronger for their battles, and it shows them that someone cares.