Where to Begin: Finding Help During Chronic Illness

When my husband first got sick, I was honestly just so overwhelmed trying to “maintain,” that finding help for our household was put on the back burner for several weeks.  When things finally calmed down, I realized that my family needed help, but I had no idea where to begin looking for it.  I am honestly fairly ignorant regarding government assistance programs.  I didn’t know what programs were applicable, when I should apply, or who could answer my questions.

I asked just about everyone I knew for information and assistance: friends who are suffering from cancer, support groups, doctors, teachers, lawyers, school social workers, church deacons, financial counselors, and many other people.  One doctor put us in touch with a hospital social worker who handed me a copy of the Seniors Blue Book and evidently considered her responsibilities fulfilled.  While there’s some good information in the blue book, the vast majority of it really isn’t applicable to my 37-year-old husband.  At this point, he is not looking for a retirement home or assisted living center.  While everyone tried to give some direction, no one could really give me a complete picture or a clear path to follow.

I admit that I am one of those people who prefers to have a checklist at all times (even if I make my own).  In fact, I would have loved an instruction booklet called The Step-by-Step Guidebook for New Caregivers: What to Do When Your Spouse Becomes Disabled.  Unfortunately, I haven’t found one yet.  I think if I ever have this system all figured out, I should write one.  Until then, I’ve had to “muddle” my way through “the system.”  I still don’t have all the answers.  However, I am hoping that by sharing some of the information below, the information will at least give other caregivers a place to start.

  1. The first thing I recommend doing is talking to your doctors about your concerns.  Doctors can prescribe various services such as physical and occupational therapy.  Sometimes their recommendations are covered by your insurance company.  They can also put you in touch with medical social workers.  Which leads to #2.
  2. I have found that a knowledgeable MSW is your greatest resource during a health crisis.  A good social worker will recommend government assistance programs and provide applications to charitable organizations.  They should answer your questions, help you navigate the system, and become your advocate.  In fact, consulting with more than one medical social worker will increase your chances of finding all available programs and services.  For example, one social worker recommended a discount program to us at the hospital called CICP.  Another social worker submitted an application for Project Angel Heart, a nonprofit organization providing meals to cancer patients.
  3. The human resources department at your place of employment should guide you through benefits and insurance issues.  I have found that sometimes you have to “badger” them for the information you want, but it is their responsibility to provide you with significant dates, payment information, copies of insurance policies, and termination procedures.  Try to become familiar with laws governing your employment such as FMLA.  If you think your rights are being violated, consult an attorney.
  4. You do not always need to buy medical equipment.  There are several nonprofit organizations such as the Assistance League of Denver that will loan or give you medical equipment for free.  (To obtain wheelchairs, you will need a letter or prescription from your doctor.)  Some nursing homes and other organizations also give away equipment.  If you do choose to buy medical equipment, several stores such as Lowe’s and Home Depot are beginning to carry equipment such as tub benches, safety rails, and toilet risers for the aging population.  Youcan Toocan is a great online or catalog resource.
  5. If your disability or illness is expected to be long-term or terminal, you will want to apply for social security disability.  Applications can be submitted online.  If you qualify, social security will provide some financial resources during your illness.  Along with your disability application, you will want to apply for SSI.  Several people have told me that you will typically be turned down 2-4 times before finally receiving SSI – so you may need to re-apply several times.  Do not give up.
  6. If your families’ income is below a certain level or you have special medical needs, you can also get an application for assistance at your county’s welfare office or online.  I personally found the list of services, qualifications, and application daunting, but it is important to turn this application in as soon as possible because some programs post-date their payments up to three months.  However, the catch is that, to qualify you typically need to have under $2k in resources – so you may have to wait to apply until you have used up your short-term disability insurance, exhausted your savings, or gotten rid of a second car, for example.  Beware, you will need to gather quite a bit of financial information including proof of residence, income and resources, mortgage or lease, etc.  Set aside a few hours for this project.
  7. Especially if it is winter, you may want to apply for energy assistance.  Applications can be found online or at your county welfare office.  In Colorado, LEAP assists with your heating (gas) bills from Nov-Apr.  Phone companies also have discount services available to low-income customers.  Our electric company referred us to the Salvation Army and a couple other local charities, but I haven’t tried to call them yet.
  8. Food banks are another good resource when things get rough.  You may have to call around or ask your welfare office for referrals.  These charities usually have an application process, maximum number of allowed visits, and limited hours.  Most often you will receive nonperishable items and day-old bread, but some food banks offer milk and dairy, produce, or gift cards to grocery stores.
  9. Local churches, synagogues, and charities may be able to provide financial assistance.  If you do not belong to a church, ask your family or friends where they attend worship services.  Some places will have special programs already available to the public.  At other places, you may need to ask for what you need.
  10. If you have children, you can apply for reduced or free lunches from your school district.
  11. For those who cannot drive, call to see if the bus or another service will pick you up at your house and take you to medical appointments or work.  Your social worker or doctor can submit an application for low-cost or free transportation.
  12. I have found that support groups are wonderful at giving empathy and suggesting resources.  Check out nonprofit organizations relating to your particular disability or illness.  We have found the Nephcure Foundation very emotionally supportive.  Oftentimes these organizations hold in-person meetings and mixers, but a social worker also suggested online support groups such as those provided by the American Cancer Society for the times when you do not feel like getting out of the house.
  13. As our pastor told us, losing your job or health creates a grieving process.  You may be grieving what you have lost or your future dreams.  I plan to write a blog on this sometime.  But if your family needs counseling to help deal with your new circumstances, your county’s mental health program will prorate services and hook you up with a local counselor specializing in your issues.  Local churches typically have counselors available as well.
  14. Last but not least, sometimes we do not want to burden family members and friends because we know they lead busy lives.  However, many of your friends and family members will be glad to help bring meals, clean, or do repairs as they are able.  Sometimes they just don’t know what to do.  Call or send out an email to see who is available.

I am sure there are services that I have forgotten to mention here, but I hope these suggestions will provide other caregivers with some ideas about what kinds of assistance and programs are out there and where to turn.  Please feel free to add your ideas under my blog comments section so that everyone can benefit from what we have all learned.

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Jason Graham was the recipient of the 2010 IDA Inspiration Award – Read the Article and Watch the Video Here. Read the Graham Family’s Full Story Here.

UPDATE: We regret to inform you that Jason passed away on April 2, 2011. Our thoughts and prayers are with the Graham family. Read full story.

ADDITIONAL RESOURCES:

Programs4People – the Invisible Disabilities Association’s page for links to help with groceries, utilities, clothing, prescriptions and more.

Applying for Disability Benefits with Chronic Illness – Attorney Scott Davis

Chronically Ill Patient’s Rights – Jennifer C. Jaff

Common Mistakes When Social Security is Denied

Free Social Security Disability Evaluation with Allsup

Health Care Issues for Patients with Chornic Illness – Attorney Jennifer C. Jaff

Six Advantages of Representation for SSDI

Tips on How to Pay for Medical Care – Jacqueline L. Jones

About Michelle Graham

Michelle Graham is an IDA Publications Contributor. Her husband, Jason, has battled a pituitary tumor and kidney disease since the age of 29. Although he had a successful brain surgery, his first kidney transplant began to fail within a few weeks. During these years, Michelle found out she had an autoimmune disease and underwent several surgical procedures. Jason was planning a second transplant in 2010, but was diagnosed with a brain mass (PTLD -rare type of lymphoma caused by transplant drugs) and has been undergoing treatment. Jason and Michelle have a son named Kendall. Jason was the recipient of the 2010 IDA Inspiration Award. Jason’s father, Tom, played in the NFL in the 70’s and his brother, Daniel, currently plays for the Denver Broncos.

About MichelleGraham

Michelle Graham is an IDA Publications Contributor. Her husband, Jason, has battled a pituitary tumor and kidney disease since the age of 29. Although he had a successful brain surgery, his first kidney transplant began to fail within a few weeks. During these years, Michelle found out she had an autoimmune disease and underwent several surgical procedures. Jason was planning a second transplant in 2010, but was diagnosed with a brain mass (PTLD -rare type of lymphoma caused by transplant drugs) and has been undergoing treatment. Jason and Michelle have a son named Kendall. Jason was the recipient of the 2010 IDA Inspiration Award. Jason’s father, Tom, played in the NFL in the 70’s and his brother, Daniel, currently plays for the Denver Broncos.

Comments

  1. Lynelle Lahey says:

    God bless you Michelle.
    I can only begin to understand what you are going through. My husband was diagnosed with Hepititis C over 15 years ago, and he had to quit work, became severely depressed and then developed other immune disorders.
    We too had to find out where to go to get help. It was frustrating and time-consuming at best.
    Thank you for taking the time to help others in their time of need.
    Thoughts and prayers will continue to go out to you, Jason and your family.
    You are an incredibly brave woman and I hope you receive all the help you deserve in this difficult time.

  2. I find a similar thing with a Traumatic Brain Injury. I mean, what is it? It’s not classified as a Physical Disability; but it’s not a Mental Disability either. Yet it results in the discrimination faced by survivors of both these disability-types.

  3. Barb Lanning says:

    Michelle, great article. Having been care giver for my parents for several years I know how confusing and frustrating it can be to find the resources and help. At least with the elderly you can start with your local department for the aging. I decided to save your article unless I need it or I can provide it for others. Thank you for your advice.

  4. Linda Gartrell says:

    Michelle,
    Your story touched my heart! My husband (61 yo) quickly deteriorated over a period of 14 months to the point of deciding whether or not to keep going to the hospital for diuresis so he could breathe. He was born with an ASD Atrile Septal Defect, a hole in his heart. In 1995 after he was diagnosed with Congestive Heart Failure the doctors found the hole and patched it. In the Fall of 2008 he had to fire about 200 people over a period of 3 months and the personal strain and stress affected his heart. He’s a very compassionate person.By April 2010 he couldn’t walk 10 feet and we were looking a in-home hospice. If he stopped diuresis he wouldn’t live for more than a month. During this time I was working, lost my job, began consulting while working part-time at a craft store. But I lost both of those jobs and it was during the down time that I realized how totally burnt out I was. I was no help to him plus I have Fibro, Rheumatoid Arthriitis, Double Vision, TMJ… Then his cardiologist recommended he get his pacemaker upgraded to a biventricular one, however, only 50% of the people benefit from it.Two days after the change he walked 2 blocks!! Thank God! As I look back, I really should have gotten much more help sooner, but it was so complicated. I firmly believe that the caregiver must take care of themselves first so they can be there for their spouse.

  5. Dawn Chapdelaine says:

    Dear Michelle,

    Your story with your husband, Jason, really inspired me. Thank you for putting out all of this wonderful information. I am forty four years old and am in a wheelchair due to a birth defect called Spina Bifida. I also only have one kidney. My kidney was lost not due to any tumors but, due to seven kidney stones at the same time in my left kidney. If it were not for a stroke of REALLY GOOD LUCK I would have lost my right kidney too. I live in the east coast, and I had found the best doctor in the world, living in my state. He moved, and I was at the time, DEVASTATED, that was until I found an advocate and she helped me keep my urosurgeon. If you ever want to hear the rest of this story and who this man is, as he is world renowned now, please email me and I would be MORE than happy to share his information with you. Sincerely, Dawn P.S. I will keep you both in my prayers.

  6. Thank you for sharing all your hard-earned and helpful wisdom, Michelle, Your story moved me so very much. God bless you all richly. Warmly and prayerfully, Lora

  7. I’ve gone through all of these widely-known resources, still haven’t found any help, except the scam from VR and the SBA. Really need some help. Monday I would have to go to court, again without legal representation, for the endless war to fight for my home.

    My so-called “disability” resulted from an heinous assault. It would have been very, very, very, nice to get information on the victim agency. In this state, they only help in the first 72 hrs after the assault – which was way too late for me as I couldn’t see, hear or talk at that time. As it is, I’m not a “victim” anyway, I’m a survivor, suffering from abject poverty. I still need to find a way to save my retirement, if that’s possible – it’s looking worse and worse everyday that my financial needs are being ignored. I also would like to find some real actual information on how to get a viable job, after a person has been illegally fired for “disability”. (I’m ineligible for SSDI-hmmm, not “disabled”, but still denied to work because of “disability”). Because I have a disabled-built home, I’m also told that I’m ineligible for any welfare including unemployment, heat assistance, scholarships, VR and SBA (told after the two years of blatant fraud and they had depleted my life savings-harm not help), food assistance, etc., etc., etc., etc.

    It would nice to find some real legal help somewhere (the Protection and Advocacy continues to ignore me). Also financial help would be great – which seems to be a horrid thing to ask for. A search for financial help returns nothing except the fraud that has been done against children – another reason why you should never get a “disibility” designation for your child, unless in the most desperate situations. Also, the “nonprofits” are legally NOT able to help an individual, as far as I can ascertain, which makes them all pretty much harm not help.

    Just like all of the rest of pleas that I’ve made before, I would greatly appreciate any viable help.

  8. I was diagnosed with aids and menegitis, it was a nightmare, the only good part was I was approved for ssdi because I worked 30 years…now at 48, what the hell do I do…wait to die and get a gov check? I finally wrote 3 books and had them published on amazon….what else could I do?

  9. Thank you Michelle. Thank you for posting your story and letting us know your great point of view. Thank you also for putting the social worker aspect in it. As a social worker for many years, I want people to utilize our skills to help them get the benefits and care they need and deserve. As a healthcare advocate, I totally agree with you, and pray for you on your journey.

  10. catrinaalex@yahoo.com says:

    i need help please i have stage 4 liver disease need financial support and a friend to talk too.

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