The holidays will be here before we know it. When you are a caregiver of a spouse or parent with Alzheimer’s, the holiday season can be overwhelming. A little understanding and preparation can make the holiday season enjoyable and special.
Here are 8 tips to make the holidays great!
1.) Involve your loved one in the preparation. You can give your loved one small tasks such as signing holiday cards, hanging ornaments on the tree, assisting with holiday baking, and cooking, sorting decorations, flower arranging, table setting, and household chores, such as folding laundry, and dusting.
Plan their involvement during family gatherings. Peeling vegetables, stirring ingredients, folding napkins, helping set the table, passing out gifts, can all benefit you and your loved ones holiday experience. Leaving a loved one with Alzheimer’s sitting alone or without appropriate activity and inclusion can evoke distress, sadness, or behavior problems.
2.) Make sure you have all medications and supplies filled and ready for the holiday season. There are medication management pharmacies that can simplify obtaining and dispensing medications. Accupax is one such company. They deliver, coordinate multiple physicians’ orders, verify orders monthly, and prepackage individual dosages, including over the counter medicines and supplements. Also have a full supply of any incontinence products, or medical supplies available, so you do not have to get supplies at the last minute.
3.) Evaluate the environment where you will spend the holidays. If you spend the holidays at home and your loved one lives with you, they are familiar with their surroundings and have a bedroom to rest in or retreat to, when they need relief from activity. If you’re loved one is visiting your home or another family member’s home you will need a bit of preparation. Make sure the environment is barrier free, and safe. Remove throw rugs, and reduce clutter, for persons with balance or ambulation problems. Keep a change of clothes available for any mishap with spills or incontinence. If there are special diet needs, including the texture of the food or drink, make sure the host or hostess is aware, or plan to bring your loved ones meal and/or drinks.
4.) Prepare a quiet area in advance. Excessive stimulation can lead to anxiety, irritability, and exhaustion. Plan for quiet rest, and a nap. Frequent breaks from the chaos of a house full of people can prevent anxiety, and exhaustion. If your loved one starts to appear anxious, take them to the quiet area before the anxiety escalates. Monitor facial expressions throughout the day as they often mirror underlying emotion. Fidgeting, hand wringing, picking at clothing or skin, pacing, and general restlessness are common signs of agitation.
Providing soft music and familiar items in the quiet area, as well as a soft and gentle massage can reduce the anxiety. If your loved one is on medication for anxiety, you may want to pre-medicate before the holiday activities begin, if the doctor’s order is as needed. If there is an anti-anxiety medication ordered and it hasn’t been given prior to agitation, make sure you give the medication at the first sign of anxiety, as it could take up to an hour to be effective.
5.) Think about holiday traditions in your loved ones younger years and incorporate those into the holiday season. Alzheimer’s patients are able to recall long term memory much easier than short term memory. Was there special music, food, decorations or activities that were enjoyed years ago? Are there photo albums or stories from holidays past? This can often be an activity to be shared between your loved one and younger family members. Photos and stories often provoke a memorable conversation of how grandma or grandpa enjoyed the holidays years ago. The activity of sharing with the younger family members creates new memories. Are there old radio programs or music that can be found on UTube to initiate conversation and memories? Did your loved one enjoy music and singing? You can initiate a sing-a-long of their favorite songs of the past. You can find great memory stimulation products at the Alzheimer's Store
Many Alzheimer’s patients who can’t carry on a conversation retain the ability to sing or read. Are they able to read Christmas stories to the younger ones? A quiet break in the day with a Christmas story read to the family can be a much cherished activity.
6.) Provide discreet care. Alzheimer’s patients are vulnerable to embarrassment, especially in the earlier stages of the disease. If incontinence is a problem, be discreet, and don’t announce planned toileting or change of incontinence products. Educate the family prior to the events not to say things like “don’t you remember”, or “I just told you that”. The fact is each time an Alzheimer’s patient repeats themselves, they believe they have only said it one time. So family members need to respond as if it’s the first time. Redirection can work wonders, so redirect your loved one to another area of the home, or to an inclusive activity. If you find yourself getting impatient, ask another family member to take over involvement while you take a break, or ask someone to involve your loved one in a simple activity. You may need a quiet break as much as your spouse or parent.
Do not put a “bib” on your loved one during meal time. Either change their clothing prior to the meal, or plan on changing after. “Bibbing” an elderly person can initiate comments from younger family members in particular, like “why does Grandma where a bib?” We do not know the specifics of what an Alzheimer’s patient can or cannot understand. It is extremely important to provide dignified care no matter how advanced the disease is. Do not belittle your family member with comments or actions that would make them feel like a child or present them as such. They are adults with a disease, they are not children.
7.) Additional help can relieve the caregiving responsibilities with the holiday frenzy. If you have family members to provide respite ask for help, and schedule it. Have a family member provide care while you shop, attend to preparations, or just rest. If a family member is unavailable, private duty homecare can help wonders.
Agencies like Visiting Angels can provide respite, and/or assistance for holiday functions. Caregiver’s can attend family functions with your spouse or parent so you can be relieved of the caregiving duties and just enjoy family. They can also bring your loved one to and from a family function for a specific time period. As an example, if you know the holiday events will be too chaotic or lengthy, you can have a caregiver bring your loved one to only the dinner portion of the event, and return home with them until the event is over and you can resume care.
Caregivers can also help your parent prepare for the holidays by assisting with sending cards, baking, shopping, decorating, and wrapping gifts.
If you think you cannot afford holiday care, plan it as part of your gift giving budget. This will not only be a gift to you, but to your loved one as well. Relieving tension and stress, as well as enjoying the holidays as the family member you are and not a caregiver, can bring a memorable and joyful holiday that will be much more meaningful than a traditional gift. Most agencies offer gift certificates. Ask family members to purchase care certificates in place of material gifts.
7.) Understand that holidays’ are frequently a very lonely and depressing time of year for the elderly. They can get lost in the shuffle, and their feelings disregarded. Many have lost spouses, and friends. Recent losses are particularly difficult, including the loss of independence.
It’s important to take the time to include the elderly in your holiday preparations and plans. Understand and take time to validate their feelings and initiate conversations about the positive memories they have. Begin a new memory by including a remembrance of a lost loved one. Whether that is taking flowers to a cemetery, making an ornament with their loved ones photo, or including a favorite past time of their loved one in the holiday activities, it will validate their feelings of loss.
When it’s a loss of independence, concentrate on engaging your loved one in simple decision making or tasks that can easily be accomplished. Thank them for their contributions and add simple compliments. Let them know that you understand loss of independence is difficult, but you are there for them, and will help them with what they can no longer do.
Do not take away independence by doing things for your loved one they can do for themselves. You want to maintain as much independence as possible for as long as possible. I always say, if you don’t use it, you lose it. Don’t contribute to the loss.
Preparation and these simple tips can make everyone’s holidays something great and memorable. These tips can apply to most family gatherings and functions. Keep the list handy for future reference and make all events the best they can be!
Angil Tarach can be reached for questions or comments at visitingangelswc@comcast.net, or Visiting Angels
Saturday, November 14, 2009
Sunday, October 25, 2009
My Friend Bob DeMarco is an Alzheimer's Caregiver
My friend Bob Demarco is the sole caregiver of his mother with Alzheimer's, and the founder of the Alzheimer's Reading Room, the #1 site for Alzheimer's information. Bob is not unique in the fact that he is one of the nearly 50 million American's caring for a loved one, but he is unique in the fact that he spends his life providing care for his mother and spends an enormous amount of time, energy, thought, and research into helping others facing Alzheimer's.
Six years ago Bob left his job on Wall St. to take care of his Mom who developed Alzheimer's and is now 93 years old. On Bob's website, the Alzheimer's Reading Room, he offers the latest research, treatment, caregiving tips, and insight into his world. You can read his story into leaving Wall St. at http://www.theunrulymob.com/our-parents/wall-streeter-one-day-alzheimer%E2%80%99s-caregiver-the-next/
There is a ton of information on the web about Alzheimer's and care, but I find Bob's thoughts and insight the most interesting. He has a unigue perspective and way of writing about his life as a caregiver that I find rare, and heartwarming. Bob recently posted a story that I think every caregiver should read and pass on, called "Twinkle, Twinkle Little Star." Rather than repost the entire article here, I invite you to go to the Alzheimer's Reading Room to read the article, and subscribe for more wonderful stories and information. http://www.alzheimersreadingroom.com/2009/10/twinkle-twinkle-little-star.html
It has been my honor and privilege to know and become friends with Bob DeMarco. He is truly an Angel to Alzheimer's patients, their families, and all those affected.
Angil Tarach can be reached for questions or comments at visitingangelswc@comcast.net, or www.visitingangels.com/annarbor
Six years ago Bob left his job on Wall St. to take care of his Mom who developed Alzheimer's and is now 93 years old. On Bob's website, the Alzheimer's Reading Room, he offers the latest research, treatment, caregiving tips, and insight into his world. You can read his story into leaving Wall St. at http://www.theunrulymob.com/our-parents/wall-streeter-one-day-alzheimer%E2%80%99s-caregiver-the-next/
There is a ton of information on the web about Alzheimer's and care, but I find Bob's thoughts and insight the most interesting. He has a unigue perspective and way of writing about his life as a caregiver that I find rare, and heartwarming. Bob recently posted a story that I think every caregiver should read and pass on, called "Twinkle, Twinkle Little Star." Rather than repost the entire article here, I invite you to go to the Alzheimer's Reading Room to read the article, and subscribe for more wonderful stories and information. http://www.alzheimersreadingroom.com/2009/10/twinkle-twinkle-little-star.html
It has been my honor and privilege to know and become friends with Bob DeMarco. He is truly an Angel to Alzheimer's patients, their families, and all those affected.
Angil Tarach can be reached for questions or comments at visitingangelswc@comcast.net, or www.visitingangels.com/annarbor
Thursday, October 8, 2009
The Faces of Alzheimer’s
I recently started writing for the Alzheimer's Reading Room, the #1 site for Alzheimer's information.
This morning I was in the middle of an article when I called my Mom, who was getting ready to go into surgery for a hip replacement. I live in Michigan, and my Mom is in North Carolina. I was unable to go to NC at this time, so we were on the phone, when she told me my Godmother had died.
The article I was writing was "The Faces of Alzheimer's". My Godmother, Jean Rodzik, died at 88 yrs old with Alzheimer's disease. I haven't seen Jean in years. She lived in Florida, and over the years we lost track of each other. I always loved her, and thought the world of her, and her husband, and my Godfather Ed. They were joyful people who were loved by everyone who knew them. They weren't blood relatives, but great friends of my Grandmother and Aunt and became my whole families relatives by choice. My family thought so much of Jean and Ed, that my parents asked them to be my Godparents, and they were also Godparents to cousins of mine.
I just heard that Jean had advanced Alzheimer's and was moved to a facility near her daughter. It seems a perfect time for this article to be written, and as you read it, you will understand why.
So in dedication and memory of my Godmother, Jean Rodzik, and all those currently with Alzheimer's Disease, and those who have died with it, I ask you to read the article in their honor.
The Faces of Alzheimer’s
I would like the opportunity to also thank all my friends and readers who prayed for my Mom. She went through surgery great and is expected to do wonderfully! I am thrilled her pain will be less and her mobility improved!
This morning I was in the middle of an article when I called my Mom, who was getting ready to go into surgery for a hip replacement. I live in Michigan, and my Mom is in North Carolina. I was unable to go to NC at this time, so we were on the phone, when she told me my Godmother had died.
The article I was writing was "The Faces of Alzheimer's". My Godmother, Jean Rodzik, died at 88 yrs old with Alzheimer's disease. I haven't seen Jean in years. She lived in Florida, and over the years we lost track of each other. I always loved her, and thought the world of her, and her husband, and my Godfather Ed. They were joyful people who were loved by everyone who knew them. They weren't blood relatives, but great friends of my Grandmother and Aunt and became my whole families relatives by choice. My family thought so much of Jean and Ed, that my parents asked them to be my Godparents, and they were also Godparents to cousins of mine.
I just heard that Jean had advanced Alzheimer's and was moved to a facility near her daughter. It seems a perfect time for this article to be written, and as you read it, you will understand why.
So in dedication and memory of my Godmother, Jean Rodzik, and all those currently with Alzheimer's Disease, and those who have died with it, I ask you to read the article in their honor.
The Faces of Alzheimer’s
I would like the opportunity to also thank all my friends and readers who prayed for my Mom. She went through surgery great and is expected to do wonderfully! I am thrilled her pain will be less and her mobility improved!
Tuesday, October 6, 2009
I am now writing for the Alzheimer's Reading Room
The Alzheimer's Reading Room is the #1 site on the internet for information on Alzheimer's Disease. The founder Bob DeMarco, who cares for his mother with Alzheimer's disease, has provided the most frequent, up to date, and varied information on Alzheimer's.
It is my honor and privilege to join him as a writer for the Alzheimer's Reading Room. Bob DeMarco decided he would like to expand his site with a varied perspective to offer his readers more information and resources. Bob’s work comes from a very personal viewpoint, through his hands on experience and his countless hours of research. Although I have some personal experience with dementia in my family, what I offer is from a professional background, and a passion for senior care and advocacy. Together Bob and I feel we can do more to help families than we can alone. http://www.alzheimersreadingroom.com/2009/10/angil-tarach-angel-among-us.html
When I began this blog I hoped to reach seniors and their families in crisis, in an effort to help them through the healthcare maze with education, information, and resources. Since I began writing I have been asked to write for several sites, which started with Lawrence Harmon at Great Places Inc. http://www.greatplacesinc.com/blog/EntryDisplay.aspx?EntryID=549 I have met a number of wonderful and caring people that are also focused on improving the treatment and care of seniors.
I now write articles in my local news at AnnArbor.com, Wellsphere, the National Senior Living Providers Network, occasionally as a guest for Great Places Inc., and most recently the Alzheimer’s Reading Room. I share the compilation of over 30 years caring and advocating for seniors from professional and personal experience. I invite you to visit these sites, not only to view my articles, but to find other helpful information provided by these caring individuals. If you are experiencing the devastation of Alzheimer’s disease, or know someone who is, I recommend subscribing to the Alzheimer’s Reading Room for the most current and frequent information delivered to your email.
Alzheimer’s Reading Room http://www.alzheimersreadingroom.com/
Great Places Inc http://www.greatplacesinc.com/Blog/
Ann Arbor News http://www.annarbor.com/cgi-bin/mt/mt-cp.cgi?__mode=view&blog_id=1&id=1022
Wellsphere http://www.wellsphere.com/articles/angil-tarach
National Senior Living Providers Network http://nslpn.com/daily-dose-4
Angil Tarach can be reached for questions or comments at visitingangelswc@comcast.net, or www.visitingangels.com/annarbor
It is my honor and privilege to join him as a writer for the Alzheimer's Reading Room. Bob DeMarco decided he would like to expand his site with a varied perspective to offer his readers more information and resources. Bob’s work comes from a very personal viewpoint, through his hands on experience and his countless hours of research. Although I have some personal experience with dementia in my family, what I offer is from a professional background, and a passion for senior care and advocacy. Together Bob and I feel we can do more to help families than we can alone. http://www.alzheimersreadingroom.com/2009/10/angil-tarach-angel-among-us.html
When I began this blog I hoped to reach seniors and their families in crisis, in an effort to help them through the healthcare maze with education, information, and resources. Since I began writing I have been asked to write for several sites, which started with Lawrence Harmon at Great Places Inc. http://www.greatplacesinc.com/blog/EntryDisplay.aspx?EntryID=549 I have met a number of wonderful and caring people that are also focused on improving the treatment and care of seniors.
I now write articles in my local news at AnnArbor.com, Wellsphere, the National Senior Living Providers Network, occasionally as a guest for Great Places Inc., and most recently the Alzheimer’s Reading Room. I share the compilation of over 30 years caring and advocating for seniors from professional and personal experience. I invite you to visit these sites, not only to view my articles, but to find other helpful information provided by these caring individuals. If you are experiencing the devastation of Alzheimer’s disease, or know someone who is, I recommend subscribing to the Alzheimer’s Reading Room for the most current and frequent information delivered to your email.
Alzheimer’s Reading Room http://www.alzheimersreadingroom.com/
Great Places Inc http://www.greatplacesinc.com/Blog/
Ann Arbor News http://www.annarbor.com/cgi-bin/mt/mt-cp.cgi?__mode=view&blog_id=1&id=1022
Wellsphere http://www.wellsphere.com/articles/angil-tarach
National Senior Living Providers Network http://nslpn.com/daily-dose-4
Angil Tarach can be reached for questions or comments at visitingangelswc@comcast.net, or www.visitingangels.com/annarbor
Wednesday, September 23, 2009
Getting Your House in Order
As we age we start to think more and more about our later years, what we want, and don’t want and the what if’s. Part of those thoughts revolve around our medical wishes. We also think about our finances, will, living and care arrangements. What we don’t think about is getting our things in order before old age. The truth is it’s never too early to plan and prepare.
Two of the statements I hear most frequently from seniors are “I don’t want to go to a nursing home”, and “I don’t want to be put on machines.” Without the proper documents in place, your medical decisions may end up out of your hands.
This delicate subject seems to be difficult for many families to even bring up. Although we know there is a need to prepare, we tend to not want to think about someone in the family becoming terminally ill, tragically injured, or dying. Sometimes a diagnosis comes that leaves a family time to prepare, but many times there is an unexpected crisis, which can leave a family reeling to make decisions. Caring Connections has a great article to bring the subject up within the family and ease the process into this conversation. http://www.caringinfo.org/PlanningAhead/AdvanceCarePlanning/TalkingWithOthersAboutTheirEndOfLifeWishes.htm
Many people lack understanding or misunderstand Advanced Directives, DNR, Full Code, Living Will, Guardianship, and Power of Attorney. For the ease of understanding, here are the basic definitions. There are also financial Wills, and Trusts. These are detailed legal documents for your financial planning. Many companies offer free seminars to educate the public on this planning.
Advanced Directives- A legal document also referred to as a medical directive, which documents an individual's preferences regarding the manner in which they would like to receive health care, in the event they can no longer communicate such wishes directly. Living Wills, Health Care Powers of Attorney and Health Care Proxy are examples. Here is a website that has Advanced Directive forms by state, since this document can vary by state. http://www.caringinfo.org/stateaddownload
DNR- Stands for Do Not Resuscitate, meaning you do not want CPR performed if your heart stops. This ONLY relates to CPR, and not continuing medical treatment. This is also a legal document signed by a physician and witnesses. You can obtain a Michigan DNR form at http://www.michbar.org/elderlaw/pdfs/dnr_phys.pdf Check with your primary physician if this form is legal in your state.
Full Code- This is referring to having CPR done if your heart stops. Again, this does not refer to continuing medical treatment. You do not need any type of documentation to receive CPR. CPR is emergency protocol in all states unless there is a DNR order signed and available.
Living Will- This is another term for Advanced Directives. It is a legal document that describes individuals' wishes and preferences about lifesaving medical treatments should they not be able to communicate their wishes directly.
Guardianship- A legal procedure that grants an individual guardian status over another individual who can no longer make decisions for him or herself. This impacts the subject's rights and as such is usually used as a last approach. This typically happens when an individual has not prepared for Power of Attorney, and is debilitated to the point they can no longer make decisions. There are situations where a family member will apply for Guardianship if a parent has lost the ability to make decisions, or when an individual has no family, and through some type of crisis, will be appointed a Guardian through the courts list of Guardians. The individual has to be certified by a physician, they are no longer to make informed and appropriate decisions, and there will be a court hearing to either grant or deny guardianship.
Power of Attorney- There are 2 types of POA’s. One is over financial matters; the other is over healthcare decisions. These are legal documents in which you grant permission to a specific individual or individuals to make decisions on your behalf. These type of document’s give the person you appoint full control of decisions, unless you include a will or trust in financial matters, or an Advanced Directive in the event of healthcare matters.
Although an attorney is not necessary to prepare POA’s, I highly recommend an attorney or estate planner in the case of a financial power of attorney. The American Bar Association has detailed information about planning your estate and healthcare matters. http://www.abanet.org/rpte/public/home.html University of Michigan Health System has a Medical Power of Attorney form available. http://www.michbar.org/elderlaw/pdfs/dpoa_hc.pdf You should make an appointment with your primary physician to discuss your medical wishes, as well as your Medical POA.
All of these planning documents are able to be changed, and/or revoked as long as you are of sound mind. Never let anyone pressure you to grant them POA, or make any other decisions you are not comfortable with. I have seen care providers, and family members pressure seniors into signing documents that are not in the best interest of them, to take advantage of their finances. You will want to appoint someone that understands your wishes and loves you enough to make sure those wishes take place as much as possible. Consult an attorney if you need advice, or feel uncomfortable if someone approaches you to sign documents you are unsure of.
Proper planning cannot be done soon enough, and will eliminate the stress involved in snap decisions.
Two of the statements I hear most frequently from seniors are “I don’t want to go to a nursing home”, and “I don’t want to be put on machines.” Without the proper documents in place, your medical decisions may end up out of your hands.
This delicate subject seems to be difficult for many families to even bring up. Although we know there is a need to prepare, we tend to not want to think about someone in the family becoming terminally ill, tragically injured, or dying. Sometimes a diagnosis comes that leaves a family time to prepare, but many times there is an unexpected crisis, which can leave a family reeling to make decisions. Caring Connections has a great article to bring the subject up within the family and ease the process into this conversation. http://www.caringinfo.org/PlanningAhead/AdvanceCarePlanning/TalkingWithOthersAboutTheirEndOfLifeWishes.htm
Many people lack understanding or misunderstand Advanced Directives, DNR, Full Code, Living Will, Guardianship, and Power of Attorney. For the ease of understanding, here are the basic definitions. There are also financial Wills, and Trusts. These are detailed legal documents for your financial planning. Many companies offer free seminars to educate the public on this planning.
Advanced Directives- A legal document also referred to as a medical directive, which documents an individual's preferences regarding the manner in which they would like to receive health care, in the event they can no longer communicate such wishes directly. Living Wills, Health Care Powers of Attorney and Health Care Proxy are examples. Here is a website that has Advanced Directive forms by state, since this document can vary by state. http://www.caringinfo.org/stateaddownload
DNR- Stands for Do Not Resuscitate, meaning you do not want CPR performed if your heart stops. This ONLY relates to CPR, and not continuing medical treatment. This is also a legal document signed by a physician and witnesses. You can obtain a Michigan DNR form at http://www.michbar.org/elderlaw/pdfs/dnr_phys.pdf Check with your primary physician if this form is legal in your state.
Full Code- This is referring to having CPR done if your heart stops. Again, this does not refer to continuing medical treatment. You do not need any type of documentation to receive CPR. CPR is emergency protocol in all states unless there is a DNR order signed and available.
Living Will- This is another term for Advanced Directives. It is a legal document that describes individuals' wishes and preferences about lifesaving medical treatments should they not be able to communicate their wishes directly.
Guardianship- A legal procedure that grants an individual guardian status over another individual who can no longer make decisions for him or herself. This impacts the subject's rights and as such is usually used as a last approach. This typically happens when an individual has not prepared for Power of Attorney, and is debilitated to the point they can no longer make decisions. There are situations where a family member will apply for Guardianship if a parent has lost the ability to make decisions, or when an individual has no family, and through some type of crisis, will be appointed a Guardian through the courts list of Guardians. The individual has to be certified by a physician, they are no longer to make informed and appropriate decisions, and there will be a court hearing to either grant or deny guardianship.
Power of Attorney- There are 2 types of POA’s. One is over financial matters; the other is over healthcare decisions. These are legal documents in which you grant permission to a specific individual or individuals to make decisions on your behalf. These type of document’s give the person you appoint full control of decisions, unless you include a will or trust in financial matters, or an Advanced Directive in the event of healthcare matters.
Although an attorney is not necessary to prepare POA’s, I highly recommend an attorney or estate planner in the case of a financial power of attorney. The American Bar Association has detailed information about planning your estate and healthcare matters. http://www.abanet.org/rpte/public/home.html University of Michigan Health System has a Medical Power of Attorney form available. http://www.michbar.org/elderlaw/pdfs/dpoa_hc.pdf You should make an appointment with your primary physician to discuss your medical wishes, as well as your Medical POA.
All of these planning documents are able to be changed, and/or revoked as long as you are of sound mind. Never let anyone pressure you to grant them POA, or make any other decisions you are not comfortable with. I have seen care providers, and family members pressure seniors into signing documents that are not in the best interest of them, to take advantage of their finances. You will want to appoint someone that understands your wishes and loves you enough to make sure those wishes take place as much as possible. Consult an attorney if you need advice, or feel uncomfortable if someone approaches you to sign documents you are unsure of.
Proper planning cannot be done soon enough, and will eliminate the stress involved in snap decisions.
Tuesday, September 22, 2009
Flu facts simplified
The flu is high on the ranks of national concern as we head into the flu season. I know the importance of education, in particular, prevention. Prior to opening Visiting Angels in 2002, I worked as an Infection Control Coordinator for the State of Michigan. www.visitingangels.com/annarbor
Sometimes the media can exaggerate the truth of the flu facts, so it’s important to know where to find the correct information. There are three primary organizations that monitor the spread and provide education on prevention and treatment, the Centers for Disease Control (CDC), the World Health Organization (WHO), and the Association for Professionals in Infection Control (APIC).
This quick quiz will test your base knowledge about the flu.
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Many people still misunderstand what the flu is. Influenza is a viral respiratory infection, not a gastrointestinal infection. I have heard more people than I can count say they have the flu when their only symptoms are vomiting and diarrhea. Although certain flu viruses may include those symptoms, the primary symptoms of the flu are fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills and fatigue. I often describe the flu as a nasty cold, with your skin hurting. This simple explanation seems to help people understand the difference between a cold and the flu.
It is important to understand that antibiotics will not resolve the flu. Antibiotics are for bacterial infections, not viral infections. There are a few antivirals that can reduce the flu, but these medications are for specific viruses, and will only help if they are started quickly. Most people will miss the time frame waiting for the doctor appointment.
The CDC and WHO have been reporting on the H1N1 flu, otherwise known as the swine flu. The H1N1 is different than the typical seasonal flu because of the viral makeup. It has combined genes from pigs, bird (avian), and humans, which originated in Europe and Asia. The more complicated the gene makeup, the more factors that have to go into developing an effective vaccine.
The WHO has declared the H1N1 outbreak to be a pandemic, or a worldwide epidemic. The CDC and WHO have been discussing and preparing for a pandemic for years. There have been three other pandemics since 1900, and a few pandemic threats. The pandemics that occurred were the Spanish flu in 1918, the Asian flu in 1957, and the Hong Kong flu of 1968.
A typical seasonal flu in the US will cause approximately 36,000 deaths a year. Pandemics can cause millions of deaths. The CDC provides a map called FluView, which shows the national flu activity, state by state, week by week, throughout flu season. Michigan currently has sporadic activity. http://www.cdc.gov/h1n1flu/updates/us/
Flu vaccines are still the No. 1 way to prevent flu-related death. The second most-effective prevention is hand washing, which also includes alcohol based hand gels. Third is to stay home if you are ill. According to the CDC, you should remain home at least 24 hours after the fever is gone.
Influenza is spread by droplets. When someone who has the flu coughs or sneezes droplets of the virus are expelled into the air. These droplets are too heavy to remain in the air, so we pick them up in surfaces. We touch an infected surface, then touch our mouth, eyes, or nose, and the virus is now introduced into our body. This is the reason for so much emphasis on handwashing.
I don't go anywhere without hand gel in my purse and car. Anytime I am out in public I use hand gel. Couging or sneezing into a tissue, and washing your hands, or using gel, can prevent thousands of people from getting ill, and keep you flu free.
There are categories of people at risk. Those include small children, pregnant women, those with compromised immune systems, and the elderly. People with respiratory and heart conditions should be especially careful. Facilities where a large amount of people reside or gather, like long term care facilities, need to be especially cautious.
If you are experiencing flu symptoms, do not go to a long term care facility or into a senior’s home. If you fall into any of the at-risk categories in particular, ask family and friends who are ill to refrain from coming to visit. Some see that as being rude, but if a family member or friend doesn’t have enough sense to stay home ill, you have no recourse but to protect your health.
Pandemics can be so severe that most businesses would close, emergency rooms would shut down, and millions would die. I know it is very difficult for employers to run a business when employees are calling in sick. If you don’t encourage sick employees to stay home, and they spread the flu throughout, you may not have any employees well enough to work. The CDC provides specific information for workplaces and employees. I highly recommend prevention preparation for your business. Provide information to your employees from the CDC, and alcohol based hand gel in several locations for easy access. Encourage sick employees to stay home, and make a contingency plan if several employees are out sick. http://www.cdc.gov/flu/workplace/index.htm
I hope we can all do our part to prevent the potential devastation of a pandemic, by following these simple actions.
For more information, CDC http://www.cdc.gov/h1n1flu/qa.htm, WHO http://www.who.int/en/, a special site for the flu, developed by the CDC http://www.flu.gov/
To contact Angil Tarach with questions or comments email visitingangelswc@comcast.net, or call Visiting Angels (734) 929-9201
Sometimes the media can exaggerate the truth of the flu facts, so it’s important to know where to find the correct information. There are three primary organizations that monitor the spread and provide education on prevention and treatment, the Centers for Disease Control (CDC), the World Health Organization (WHO), and the Association for Professionals in Infection Control (APIC).
This quick quiz will test your base knowledge about the flu.
&
Many people still misunderstand what the flu is. Influenza is a viral respiratory infection, not a gastrointestinal infection. I have heard more people than I can count say they have the flu when their only symptoms are vomiting and diarrhea. Although certain flu viruses may include those symptoms, the primary symptoms of the flu are fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills and fatigue. I often describe the flu as a nasty cold, with your skin hurting. This simple explanation seems to help people understand the difference between a cold and the flu.
It is important to understand that antibiotics will not resolve the flu. Antibiotics are for bacterial infections, not viral infections. There are a few antivirals that can reduce the flu, but these medications are for specific viruses, and will only help if they are started quickly. Most people will miss the time frame waiting for the doctor appointment.
The CDC and WHO have been reporting on the H1N1 flu, otherwise known as the swine flu. The H1N1 is different than the typical seasonal flu because of the viral makeup. It has combined genes from pigs, bird (avian), and humans, which originated in Europe and Asia. The more complicated the gene makeup, the more factors that have to go into developing an effective vaccine.
The WHO has declared the H1N1 outbreak to be a pandemic, or a worldwide epidemic. The CDC and WHO have been discussing and preparing for a pandemic for years. There have been three other pandemics since 1900, and a few pandemic threats. The pandemics that occurred were the Spanish flu in 1918, the Asian flu in 1957, and the Hong Kong flu of 1968.
A typical seasonal flu in the US will cause approximately 36,000 deaths a year. Pandemics can cause millions of deaths. The CDC provides a map called FluView, which shows the national flu activity, state by state, week by week, throughout flu season. Michigan currently has sporadic activity. http://www.cdc.gov/h1n1flu/updates/us/
Flu vaccines are still the No. 1 way to prevent flu-related death. The second most-effective prevention is hand washing, which also includes alcohol based hand gels. Third is to stay home if you are ill. According to the CDC, you should remain home at least 24 hours after the fever is gone.
Influenza is spread by droplets. When someone who has the flu coughs or sneezes droplets of the virus are expelled into the air. These droplets are too heavy to remain in the air, so we pick them up in surfaces. We touch an infected surface, then touch our mouth, eyes, or nose, and the virus is now introduced into our body. This is the reason for so much emphasis on handwashing.
I don't go anywhere without hand gel in my purse and car. Anytime I am out in public I use hand gel. Couging or sneezing into a tissue, and washing your hands, or using gel, can prevent thousands of people from getting ill, and keep you flu free.
There are categories of people at risk. Those include small children, pregnant women, those with compromised immune systems, and the elderly. People with respiratory and heart conditions should be especially careful. Facilities where a large amount of people reside or gather, like long term care facilities, need to be especially cautious.
If you are experiencing flu symptoms, do not go to a long term care facility or into a senior’s home. If you fall into any of the at-risk categories in particular, ask family and friends who are ill to refrain from coming to visit. Some see that as being rude, but if a family member or friend doesn’t have enough sense to stay home ill, you have no recourse but to protect your health.
Pandemics can be so severe that most businesses would close, emergency rooms would shut down, and millions would die. I know it is very difficult for employers to run a business when employees are calling in sick. If you don’t encourage sick employees to stay home, and they spread the flu throughout, you may not have any employees well enough to work. The CDC provides specific information for workplaces and employees. I highly recommend prevention preparation for your business. Provide information to your employees from the CDC, and alcohol based hand gel in several locations for easy access. Encourage sick employees to stay home, and make a contingency plan if several employees are out sick. http://www.cdc.gov/flu/workplace/index.htm
I hope we can all do our part to prevent the potential devastation of a pandemic, by following these simple actions.
For more information, CDC http://www.cdc.gov/h1n1flu/qa.htm, WHO http://www.who.int/en/, a special site for the flu, developed by the CDC http://www.flu.gov/
To contact Angil Tarach with questions or comments email visitingangelswc@comcast.net, or call Visiting Angels (734) 929-9201
Saturday, August 22, 2009
My Story as a Nurse and Patient, in the Face of Healthcare Reform
The healthcare reform debate is heated, and has become full of scare tactics to serve an anti reform agenda.
It's important to be able to decipher the loads of articles, reports, and information, and figure out where the truth lies. It's also important to leave the political agenda out of healthcare. Healthcare is not Democrat or Republican, because illness isn't biased. No matter which side of the aisle you’re on, you need to look at the truthful facts.
If you or your family have not suffered with a serious illness or injury, or are not a healthcare professional you have not had enough healthcare experience to decide whether your insurance will adequately cover you if or when the time comes to really need it.
I have been on both sides of the healthcare system as a nurse and a patient with 2 chronic incurable illnesses. I have personally debated for a long time whether I would tell my own healthcare story. There are several reasons why I am, but mostly because I want people to understand the fine line we walk with our health, and what anyone can face in our current system.
Like many, I thought my private insurance was great, and I was covered, until I really needed it. I found out the truth as I have spent over $70,000 in 5 years on medical expenses. I went from a healthy, active, hardworking woman, and mother, to a very sick woman who had a horrific 5 year battle with insurance companies and healthcare system, in an effort to be diagnosed and treated.
I was one of the people you hear about denied by my insurance company. I fought for 4 years for one diagnosis, Chronic Fatigue Immune Deficiency Syndrome. It was nearly 5 years before I was finally and fully diagnosed with another, Sjogren's Syndrome. About 3 years into an unexplainable illness and exhaustive battle, 7 doctors wrote my insurance company recommending the Cleveland or Mayo Clinic, because they were unable to diagnose me.
Care Choices, my insurance company at the time, denied access to either clinic. I was so sick at the time; I literally felt I would die. Some days I was too exhausted and felt the battle was too big to continue the fight, and other days I felt I was battling for my life, and I had to keep pushing. I decided to appeal Care Choices.
If you have never appealed an insurance company’s decision, let me give you the ugly picture of it all. I had a hearing scheduled with the board that allowed me to bring my own representatives. I brought my family. Since I am a nurse, I am not easily intimidated by healthcare professionals, or administration. I can imagine the typical patient attending a hearing of this type would be extremely intimidated, as they sit in a board room across the table from several board members to fight for their health.
I can still picture the room, and sitting across the table from 8 or 9 executive board members with their condescending looks. The meeting was announced, and after going through the appeal I had initiated and the process, we were able to speak.
My family described to the board just how sick I was. How they had watched me go from a very health and active woman to a woman they saw dying before their eyes. How significantly my life had changed, and the years I had gone to different doctors and specialists, the countless tests, medications, and even surgeries that found no cause to my life changing illness. While watching my son and sister with tears in their eyes, I heard for the first time, my family tell this group of decision makers how they feared for my life.
This was difficult to hear. Although I had many days I wondered if I'd die, I kept that to myself for the most part to avoid worrying my family. I knew how I felt, but didn't really understand the scope of what they saw and felt. The funny thing about chronic illness is you can usually hide it pretty well. To most outsiders I appeared completely fine, when I was able to leave my bed and home. To others that really knew me, I guess I wasn't able to conceal the toll this illness was taking on me.
The board made remarks and asked questions with a patronizing tone, which would make anyone in my place angry. It was finally my turn to speak, and I quoted their mission and statements which did not fall in line with what I was experiencing. I demanded approval based on specific language in my policy. I had done my homework, and I think they knew it. I watched a couple board members change their facial expressions from condescending to sympathetic, while others remained cavalier, and appeared determined to continue the denial.
Following the appeal I was approved 2 visits to the Cleveland Clinic, one for an evaluation and one for tests. Understand when you are extremely ill, have no idea why, and suffer from multiple symptoms, it is difficult for a nurse, let alone someone without medical knowledge, to determine which department you want to be evaluated by. I had to choose a department, so with daily significant abdominal pain and 60 lb weight loss, I decided on the gastrointestinal clinic.
I took 3 years of tests results, and physician reports to the Cleveland Clinic. The physician glanced through them and asked the same questions I had been asked by the 11 or so doctors I previously went to. He said he wanted tests repeated I had already had, stating they had found more answers than other physicians with those same tests.
I went home and waited for the call to schedule the tests. The nurse from the GI Clinic in Cleveland called stating the doctor wanted a colonoscopy, upper endoscopy, and abdominal CT's performed with and without dye. She wanted to schedule the tests over a few days. I told her my insurance company approved 1 day for tests, so I couldn't have them over several days.
We both understood the affect having those tests in one day would do to my body, so she said she was going to work on further approval from Care Choices. A couple weeks went by, and we spoke again. Care Choices would not approve more than one day of tests, so she reluctantly scheduled them in one day. I had to go to Cleveland the day before to prepare for the tests.
I cannot explain what having those 4 tests in one day made me feel like. I can only tell you I was so weak I couldn't walk. I was wheeled through the hospital in a wheelchair so weak I couldn't stand without help.
Since my insurance company allowed 2 visits, I wasn't even approved to go over my test results in person with the doctor. This angered my doctor and nurse, but they were sympathetic to my position and agreed to fax me the results and go through them on the phone. They had found a couple things not previously found, but did not produce a diagnosis as I had hoped. They could not further evaluate or recommend any other department because Care Choices would not approve anything further. The decisions were not between my doctor and myself, they were made by the insurance company. The staff at the Cleveland Clinic wanted to continue to help me, but could go no further, so I was left feeling like I had exhausted my options.
It was another year of illness, and trying to control the extreme pain and fatigue before I decided I had to go outside of the network and pay out of pocket, in an attempt to get diagnosed. This was a very expensive choice, but I was out of options.
My insurance at this point was through COBRA, and coming to an end. I needed to remain insured but had only one choice other than Care Choices, and that was Blue Cross Blue Shield. The only insurance I could obtain with a pre-existing condition, which hadn't even been diagnosed. It was at this time I found out that our medical information and history is put into a national system that insurance companies have access to.
Once on BC/BS I looked for additional options. Through a recommendation of a friend I went to a clinic that specializes in Chronic Fatigue. The initial appointment was over $400, none of which would be covered by Blue Cross. Not surprised!
I went to the clinic where it was finally acknowledged just how sick I was. Most of the doctors I had been to knew I was sick, but without an official diagnosis, or understanding of my condition, they didn’t realize just how sick I was. They would recommend the next specialist or send me on my way with telling me they were sorry they couldn’t help me, good luck, and good bye.
There were times during my illness that I would’ve rather heard I had cancer than to not know what I was facing. Not knowing was much worse than knowing I have 2 chronic incurable illnesses. Unless you have been there, you have no idea the relief to finally have a doctor give this mysterious illness a name and an acknowledgement of just how devastating of an illness it is.
My 1st appointment at the clinic was very thorough. Several tests were ran that none of the previous 12 doctors had run, and several factors contributing to my illness were found. The course of treatment was discussed. I would receive weekly IV's, injections, prescribed medications, and supplements. Treatment would be expected to last at least six months to a year, maybe longer.
Now I was looking at a miracle with a hefty price tag. My only hope in 4 years…if I could afford it. It was going to come out of pocket because the clinic is not in the "network" of BC/BS, and would not be covered.
To make this story shorter, I applied for a credit card to finance treatment, and began an 8 month course of IV's, injections, and 54 pills a day. I was prescribed a medication in January that cost over $900 a month, and my prescription limit on Blue Cross was $2500 a year, not to mention the other prescriptions I was ordered.
I stopped treatment after 8 months because I could no longer afford the $700=$2000 a month I was spending. Now it was time to find another doctor who would understand Chronic Fatigue, and possibly know of a treatment my insurance would pay for. I found a Rheumatologist at the University of Michigan, Dr. Peredo, who would not only understand Chronic Fatigue, but would suspect another diagnosis on my 1st visit. After one test it was confirmed I have Sjogren's Syndrome. None of the 12 previous doctors had ever mentioned it, and it turned out to be my primary diagnosis, with CF being my secondary.
Care Choices did not have the University of Michigan Health System in their "network", so it wasn't until I changed to BC/BS that I could even pursue an evaluation or treatment there. I could have saved myself 5 years of agony, thousands of dollars and the battle of my life if I had an initial choice.
You could say, ”oh, hers is one story.” Yes, it’s true. Mine is one story, as a patient. I can tell you countless stories as a nurse, but there would be no end to this article. Not only have I been through it personally, I have witnessed it professionally, more times than I care to think about.
I highly recommend the movie SICKO. Whether you are a Michael Moore fan or can’t stand him, this movie gives a very accurate view of having private insurance and being sick in America. I was in a movie theater the 1st time I saw the movie with tears running down my face because I could’ve been one of the people in the movie, and you could be too. I thought every person in America needs to see this movie. I believe that now more than ever, while we face healthcare reform.
I read the opinions, watch the naysayers, and scare tactics out there, and wish the people fighting healthcare reform could understand how at risk they are for exactly what I went through. So many are in fear of a government based insurance. I can tell you if I had been on Medicare or Medicaid, I would’ve had a choice. I wouldn’t have been out thousands of dollars, and my entire savings. I would’ve been treated earlier and suffered less.
So many comments I see are based on ignorance of a system they have no experience in. When I see comments such as “I don’t want to change insurances, I like what I have”, I wonder how much they’d like it if they were sick like I was, or like millions of others. Put yourself in the shoes of the families who have lost a loved one who was denied treatment, or lost their home because of medical expenses. I liked my insurance too, until I really needed it. I do understand that thought pattern, but it is so far from reality when you face a devastating illness or injury. I can imagine the thoughts going through some readers minds…”not my insurance!” I say, don’t bet on it!
Like I said, I have been on both sides of the system, as a nurse and patient. We are in a crisis, and it will get much worse, unless we have healthcare reform. The 2 largest nurses associations in the US are the American Nurses Association, and the California Nurses Association, which are 3 million members strong. Both are advocating for reform, as well as a single payer system. AARP is backing reform, the largest senior advocate group in the US. AARP represent 35 million members, who have trusted their advocacy since 1958.
Think about it…Can 3 million nurses and AARP be wrong? It would be wiser to get your information from medical professionals and patients who know the system, than your political party or the media.
Angil Tarach can be reached for questions or comments at visitingangelswc@comcast.net
It's important to be able to decipher the loads of articles, reports, and information, and figure out where the truth lies. It's also important to leave the political agenda out of healthcare. Healthcare is not Democrat or Republican, because illness isn't biased. No matter which side of the aisle you’re on, you need to look at the truthful facts.
If you or your family have not suffered with a serious illness or injury, or are not a healthcare professional you have not had enough healthcare experience to decide whether your insurance will adequately cover you if or when the time comes to really need it.
I have been on both sides of the healthcare system as a nurse and a patient with 2 chronic incurable illnesses. I have personally debated for a long time whether I would tell my own healthcare story. There are several reasons why I am, but mostly because I want people to understand the fine line we walk with our health, and what anyone can face in our current system.
Like many, I thought my private insurance was great, and I was covered, until I really needed it. I found out the truth as I have spent over $70,000 in 5 years on medical expenses. I went from a healthy, active, hardworking woman, and mother, to a very sick woman who had a horrific 5 year battle with insurance companies and healthcare system, in an effort to be diagnosed and treated.
I was one of the people you hear about denied by my insurance company. I fought for 4 years for one diagnosis, Chronic Fatigue Immune Deficiency Syndrome. It was nearly 5 years before I was finally and fully diagnosed with another, Sjogren's Syndrome. About 3 years into an unexplainable illness and exhaustive battle, 7 doctors wrote my insurance company recommending the Cleveland or Mayo Clinic, because they were unable to diagnose me.
Care Choices, my insurance company at the time, denied access to either clinic. I was so sick at the time; I literally felt I would die. Some days I was too exhausted and felt the battle was too big to continue the fight, and other days I felt I was battling for my life, and I had to keep pushing. I decided to appeal Care Choices.
If you have never appealed an insurance company’s decision, let me give you the ugly picture of it all. I had a hearing scheduled with the board that allowed me to bring my own representatives. I brought my family. Since I am a nurse, I am not easily intimidated by healthcare professionals, or administration. I can imagine the typical patient attending a hearing of this type would be extremely intimidated, as they sit in a board room across the table from several board members to fight for their health.
I can still picture the room, and sitting across the table from 8 or 9 executive board members with their condescending looks. The meeting was announced, and after going through the appeal I had initiated and the process, we were able to speak.
My family described to the board just how sick I was. How they had watched me go from a very health and active woman to a woman they saw dying before their eyes. How significantly my life had changed, and the years I had gone to different doctors and specialists, the countless tests, medications, and even surgeries that found no cause to my life changing illness. While watching my son and sister with tears in their eyes, I heard for the first time, my family tell this group of decision makers how they feared for my life.
This was difficult to hear. Although I had many days I wondered if I'd die, I kept that to myself for the most part to avoid worrying my family. I knew how I felt, but didn't really understand the scope of what they saw and felt. The funny thing about chronic illness is you can usually hide it pretty well. To most outsiders I appeared completely fine, when I was able to leave my bed and home. To others that really knew me, I guess I wasn't able to conceal the toll this illness was taking on me.
The board made remarks and asked questions with a patronizing tone, which would make anyone in my place angry. It was finally my turn to speak, and I quoted their mission and statements which did not fall in line with what I was experiencing. I demanded approval based on specific language in my policy. I had done my homework, and I think they knew it. I watched a couple board members change their facial expressions from condescending to sympathetic, while others remained cavalier, and appeared determined to continue the denial.
Following the appeal I was approved 2 visits to the Cleveland Clinic, one for an evaluation and one for tests. Understand when you are extremely ill, have no idea why, and suffer from multiple symptoms, it is difficult for a nurse, let alone someone without medical knowledge, to determine which department you want to be evaluated by. I had to choose a department, so with daily significant abdominal pain and 60 lb weight loss, I decided on the gastrointestinal clinic.
I took 3 years of tests results, and physician reports to the Cleveland Clinic. The physician glanced through them and asked the same questions I had been asked by the 11 or so doctors I previously went to. He said he wanted tests repeated I had already had, stating they had found more answers than other physicians with those same tests.
I went home and waited for the call to schedule the tests. The nurse from the GI Clinic in Cleveland called stating the doctor wanted a colonoscopy, upper endoscopy, and abdominal CT's performed with and without dye. She wanted to schedule the tests over a few days. I told her my insurance company approved 1 day for tests, so I couldn't have them over several days.
We both understood the affect having those tests in one day would do to my body, so she said she was going to work on further approval from Care Choices. A couple weeks went by, and we spoke again. Care Choices would not approve more than one day of tests, so she reluctantly scheduled them in one day. I had to go to Cleveland the day before to prepare for the tests.
I cannot explain what having those 4 tests in one day made me feel like. I can only tell you I was so weak I couldn't walk. I was wheeled through the hospital in a wheelchair so weak I couldn't stand without help.
Since my insurance company allowed 2 visits, I wasn't even approved to go over my test results in person with the doctor. This angered my doctor and nurse, but they were sympathetic to my position and agreed to fax me the results and go through them on the phone. They had found a couple things not previously found, but did not produce a diagnosis as I had hoped. They could not further evaluate or recommend any other department because Care Choices would not approve anything further. The decisions were not between my doctor and myself, they were made by the insurance company. The staff at the Cleveland Clinic wanted to continue to help me, but could go no further, so I was left feeling like I had exhausted my options.
It was another year of illness, and trying to control the extreme pain and fatigue before I decided I had to go outside of the network and pay out of pocket, in an attempt to get diagnosed. This was a very expensive choice, but I was out of options.
My insurance at this point was through COBRA, and coming to an end. I needed to remain insured but had only one choice other than Care Choices, and that was Blue Cross Blue Shield. The only insurance I could obtain with a pre-existing condition, which hadn't even been diagnosed. It was at this time I found out that our medical information and history is put into a national system that insurance companies have access to.
Once on BC/BS I looked for additional options. Through a recommendation of a friend I went to a clinic that specializes in Chronic Fatigue. The initial appointment was over $400, none of which would be covered by Blue Cross. Not surprised!
I went to the clinic where it was finally acknowledged just how sick I was. Most of the doctors I had been to knew I was sick, but without an official diagnosis, or understanding of my condition, they didn’t realize just how sick I was. They would recommend the next specialist or send me on my way with telling me they were sorry they couldn’t help me, good luck, and good bye.
There were times during my illness that I would’ve rather heard I had cancer than to not know what I was facing. Not knowing was much worse than knowing I have 2 chronic incurable illnesses. Unless you have been there, you have no idea the relief to finally have a doctor give this mysterious illness a name and an acknowledgement of just how devastating of an illness it is.
My 1st appointment at the clinic was very thorough. Several tests were ran that none of the previous 12 doctors had run, and several factors contributing to my illness were found. The course of treatment was discussed. I would receive weekly IV's, injections, prescribed medications, and supplements. Treatment would be expected to last at least six months to a year, maybe longer.
Now I was looking at a miracle with a hefty price tag. My only hope in 4 years…if I could afford it. It was going to come out of pocket because the clinic is not in the "network" of BC/BS, and would not be covered.
To make this story shorter, I applied for a credit card to finance treatment, and began an 8 month course of IV's, injections, and 54 pills a day. I was prescribed a medication in January that cost over $900 a month, and my prescription limit on Blue Cross was $2500 a year, not to mention the other prescriptions I was ordered.
I stopped treatment after 8 months because I could no longer afford the $700=$2000 a month I was spending. Now it was time to find another doctor who would understand Chronic Fatigue, and possibly know of a treatment my insurance would pay for. I found a Rheumatologist at the University of Michigan, Dr. Peredo, who would not only understand Chronic Fatigue, but would suspect another diagnosis on my 1st visit. After one test it was confirmed I have Sjogren's Syndrome. None of the 12 previous doctors had ever mentioned it, and it turned out to be my primary diagnosis, with CF being my secondary.
Care Choices did not have the University of Michigan Health System in their "network", so it wasn't until I changed to BC/BS that I could even pursue an evaluation or treatment there. I could have saved myself 5 years of agony, thousands of dollars and the battle of my life if I had an initial choice.
You could say, ”oh, hers is one story.” Yes, it’s true. Mine is one story, as a patient. I can tell you countless stories as a nurse, but there would be no end to this article. Not only have I been through it personally, I have witnessed it professionally, more times than I care to think about.
I highly recommend the movie SICKO. Whether you are a Michael Moore fan or can’t stand him, this movie gives a very accurate view of having private insurance and being sick in America. I was in a movie theater the 1st time I saw the movie with tears running down my face because I could’ve been one of the people in the movie, and you could be too. I thought every person in America needs to see this movie. I believe that now more than ever, while we face healthcare reform.
I read the opinions, watch the naysayers, and scare tactics out there, and wish the people fighting healthcare reform could understand how at risk they are for exactly what I went through. So many are in fear of a government based insurance. I can tell you if I had been on Medicare or Medicaid, I would’ve had a choice. I wouldn’t have been out thousands of dollars, and my entire savings. I would’ve been treated earlier and suffered less.
So many comments I see are based on ignorance of a system they have no experience in. When I see comments such as “I don’t want to change insurances, I like what I have”, I wonder how much they’d like it if they were sick like I was, or like millions of others. Put yourself in the shoes of the families who have lost a loved one who was denied treatment, or lost their home because of medical expenses. I liked my insurance too, until I really needed it. I do understand that thought pattern, but it is so far from reality when you face a devastating illness or injury. I can imagine the thoughts going through some readers minds…”not my insurance!” I say, don’t bet on it!
Like I said, I have been on both sides of the system, as a nurse and patient. We are in a crisis, and it will get much worse, unless we have healthcare reform. The 2 largest nurses associations in the US are the American Nurses Association, and the California Nurses Association, which are 3 million members strong. Both are advocating for reform, as well as a single payer system. AARP is backing reform, the largest senior advocate group in the US. AARP represent 35 million members, who have trusted their advocacy since 1958.
Think about it…Can 3 million nurses and AARP be wrong? It would be wiser to get your information from medical professionals and patients who know the system, than your political party or the media.
Angil Tarach can be reached for questions or comments at visitingangelswc@comcast.net
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