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The Person Behind The Wheelchair: Who Cares for The Caregiver?

The Person Behind The Wheelchair: Who Cares for The Caregiver?

When the pictures are taken of the wounded service member meeting this official or that celebrity, who is standing behind the wheelchair?  Who takes care of the wounded for years and years?  Who is there every day?  Who takes them to every appointment while holding the rest of the family together?  Who usually ends up giving up their job to become a full-time caregiver?  The family member, the caregiver; that’s who.  The spouse, the parent, sometimes a sibling. But the question also has to be: who takes care of the caregiver?

When a service member is wounded, after the initial weeks of hospitalization with constant care by teams and platoons of nurses, therapists, medical professionals of every persuasion, who are there to help with every possible need, the long term recovery phase begins.  This is when the family member, who has already been spending weeks at the bedside, assisting the wounded service member with everything from decisions about care,  painstakingly hand-feeding them, talking to the doctors, learning what to do about dressing changes and handling the acres of paperwork: this is when they  become the main caregiver.

Then what?  The answer, as told by two women who were featured in the New York Times, is a mixture of love, joy, anger, exhaustion and sacrifice.  Rosie Babin gave up her job, gave up the life she and her husband planned, to spend each and every day caring for her son who was wounded in Iraq and who the Army wanted to put into a nursing home.  April Marcum, who attended the recent Defense Forum in DC, talked about how much her life has been altered.  In both the NYT piece and at the Forum, she told us that she’s lost the man she married, her best friend.  He’s not the same Tom, his body is there, but he is a very different person.   An online friend has described it as having her life turned upside down, and not able to get back to anything approaching what she used to call normal.

The “New Normal” includes trying to figure out how to make ends meet.  There is a huge gap between the perception that most have of Medical Retirement, and the reality. Perception: quick, easy and thorough review that immediately provides the information needed for an orderly transition from Active Service to Military Retirement and the VA.  The reality: that it takes months, sometimes years to get all the medical documents, the corrected, re-corrected and re-re-corrected applications, the determinations of disability by this agency and that; the insanity of an Army Doctor refusing to take the completed physical exam form because “it’s an Air Force form” and the frustration of waiting for hours on hold, to be told that they are talking to the wrong person, the wrong department.

So while they wait for the determination of disability, they go through their savings, they borrow from family members, they rely on the kindness of organizations.  While they wait for the caregiver stipend that is supposed to be awarded to that family member without whom the veteran could not survive, with its myriad rules and applications, they hope that they can manage to pay their bills as their credit cards max out.

This “system” needs to be fixed.  The VA and DoD claim that they are streamlining this “system,” that the disconnect between the two medical systems will be rectified, that they will actually be able to digitally transfer medical records which currently must be printed into hard copy and then rescanned into the VA system.  However, in this time of budget cuts, will these efforts be deemed to be critical?  Will the American people realize that those wounded in their service (and this is NOT the place to argue the validity of the conflicts) deserve treatment, deserve the promised benefits?  These are not entitlements, they earned these benefits with their service.

The caregivers deserve our respect; they deserve to be treated with respect by those in authority; they deserve to be supported and assisted.  They earn that respect, every minute of every day.

 

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Photo: courtesy of M. Hughes, by permission

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26 comments

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8:56PM PST on Dec 9, 2011

I would like to thank you for this article and share about A Caretaker's Wish, Inc.! I myself am a Caregiver for my two severly disabled sons and I know first hand the importance of caring for the Caregiver. We are small but gaining momentum! A Caretaker’s Wish understands the importance of recognizing Caregivers who care for the sick, injured or disabled. We believe along with our Military and Service People, Caregivers are our “Unsung Heroes”

Therefore our mission is to show appreciation to Caregivers in the community by honoring them with a unique and specialized wish gift for their selfless acts of kindness and dedication to others.

Our goal is to meet the immediate need of as many Caregivers as possible and to improve their Caregiving situations by enhancing their quality of life through physical and emotional support.
Please take a look at http://www.acaretakerswishinc.org!

Be strong Caregivers! Be strong someone cares!!!

4:52PM PST on Dec 7, 2011

I would like to see all of the politicians, social icons, christian leaders and corporate CEO's put their money where their patriotic mouths are and push through legislation to fund life long funding for all veterans and their care-taking families. We spend billions on our military equipment and pennies on our veterans.
Treatment of US veterans has been shameful throughout our history. I suppose that is in part because it is the 99% who risk their lives for causes that most benefit the 1%.

1:55AM PDT on Oct 13, 2011

Yes, as caregivers, we need to learn to care for ourselves too! I wrote an article "Respite is not for the lazy" that some may find helpful. Here is the website: http://www.passion-4-life.org/respite-is-not-for-the-lazy/

The very strength of compassion and empathy that the caregiver has can become a stumbling block if not addressed.

Thank you for your article

Michael
www.passion-4-life.org

9:18AM PDT on Oct 9, 2011

I am the care giver to an 86 year old disabled mother and a husband in his early 60's that has early onset alzheimers.......I too have felt invisable ....when it all happened it was like I was a passenger in a capsized boat...and still not knowing when the next big wave will hit......just trying to keep us all afloat. All primary care givers of loved ones do share the sameness.....of long hours........frustrating days.......and sleepless nights of many causes...but we also know, no one will take the care of those we love like we will.

5:12AM PDT on Oct 5, 2011

Thanks for the article.

9:17PM PDT on Oct 4, 2011

I am the caregiver for my 61 yr old husband who suffered a stroke 14 yrs age because of agent orange. He is retired military and was working in the private sector since his retirement. Both the Military and the private company have paid excellent benefits and we get 100% medical from the VA. We are very very lucky that we don't have to worry about money. That being said the stress and giving of yourself is endless, answering the same questions over and over again can be very never ending, but I do so willingly as I married my husband long after his stroke and I knew what I was getting in to. I am also lucky that I can leave my husband for an afternoon or morning to be some alone time just for me. There is not "normal life" any more the abnormal is normal. You have to stop every once in awhile to remember how the loved one feels that you are giving care to. They would change everything back to what it was if they could. Communication is the key.

6:55PM PDT on Oct 4, 2011

I can tell you first hand, no one takes care of the caregiver. We suffer back problems, sleepless nights, usually become ill to continue to care for our loved ones or die before the patient.
We lose friends, give us jobs, so in our retirement years we get less of SS to live on.
We have to spend down any savings to get help for our loved ones, and when we become ill, we lose our homes, what little dignity we have, and have to accept a lower standard health care or nursing home for ourselves in the end. It's even worst when you have no children or family to help you go thru this crisis in your life. even a day off, weekend off, or a vacation for a few days is no longer possible.
I for one don't know what is the answer is, to hire someone to come in your home to just help cost $30 an hour (min 5 hrs) no cooking, cleaning, medical care. Nursing home $2,500, $3,500 a month, medicare doesn't pay you have to pay, and on an SS income that is not possible. Home health care insurance was not available at any price for my husband.

3:11PM PDT on Oct 4, 2011

Inspiration thank you

1:12PM PDT on Oct 4, 2011

Care givers get the shaft when taking care of people. Their medical plans are almost non existent. if the care giver has the person in their home, the pay is cut drastically. They do not care that the home and all of the expenses of running it still needs to be payed. The care giver gets their pay cut because they don't have to drive to another place to take care if the patient. They figure it doesn't cost more to have the patient in the home. So the money and any food stamps etc. are cut drastically. which put the burden on the care giver to take care of the patient and deal with the costs that are do, for the whole situation. The state caregivers have the lowest benefits of any of the medical community.

11:18AM PDT on Oct 4, 2011

It isn't just the wounded military personal and their families who are affected by the lack of affordable quality care for the sick and the injured. Several months ago I had to give up working, spending time with my children and grandchildren, going out with friends So I could stay at home and take care of my Mom. She does not have long term care insurance amd medicare does not pay for nursing home care or adult day care. My parents worked hard all of their lives, survived the Depression and World War II only to find out in their elder years that all the tax dollars they paid in are not going to pay to care for them.

The eldery and others who are unable to care for themselves need quality affordable care that does not strip them of their assets.

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Lindsay Spangler Lindsay Spangler is a Web Editor and Producer for Care2 Causes. A recent UCLA graduate, she lives in... more
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