This picture of my 91 year old Dad and his grandson was taken a little over a week ago.  We had just enjoyed a great brunch and visit.  The next day he went to the Hard Rock casino for some fun and enjoyed a delicious dinner.  By Wednesday AM he was experiencing shortness of breath and spitting up blood.  His wife called 911 and he was placed on a ventilator upon arriving at the Emergency Room.

The emergency room did reach out to his wife for consent, however she didn’t understand what type of tube they were talking about and just said “yes, do what needs to be done”.

The last few days have been like riding a roller coaster of emotions.  I’m sharing this story to help others avoid this situation.  I have felt great sadness these last few days and believe my Dad has experienced suffering.  My Dad passed away on Sunday afternoon.

After my Dad was placed on the ventilator in the Emergency Room he was moved to the Intensive Care Unit.  There is nothing that quite prepares you for seeing someone you love on a ventilator.  A million thoughts go through your mind and you can’t help but think about how uncomfortable it must be and that you never want to be in this situation.  Imagining any of the sensations of what a tube down your throat may feel like immediately brings gagging and nausea to my mind.

I do not feel comfortable sharing a picture of him lying in the Intensive Care Unit, with a ventilator next to him, several tubes down his throat and many IV’s connected to him along with a port in his chest to receive medications.  I choose to remember how relaxed and happy he was on Sunday and hope you can capture those feelings with this image of him.

While the health care providers provided constant reassurance my Dad was not feeling a thing and had no pain it did not make me feel any better about the situation.  The sadness of losing your Dad is painful and it is even a greater sadness to see the tube inside his mouth and down his throat, forcing him to breath.  It looked like it enlarged his neck, and the position of his neck and head looked awkward, unnatural and uncomfortable.

My Dad remained fairly stable the rest of Wednesday and Thursday.  On Thursday he had a few seconds of his eyes opening from time to time and we would try to reassure him about what was happening.  It was impossible to tell if he could hear us or understood what we were saying.  He was receiving a continuous drip of Propofol, a sedation medication.  If you have ever had a colonoscopy, you more than likely were given Propofol.  It did bring me some relief to have that comparison as I have had a colonoscopy and do not remember anything of the procedure.  However, I also do not remember if anyone was speaking to me and if they were, what they may have been saying.

Thursday the health care providers collected more information regarding my Dad’s medical history, medications, etc.… and continued to run a variety of tests.  One of the problems we struggled with was gathering his medical information.  Shortly after he got remarried he changed all of his physicians to the nearby Veterans Hospital.  My Dad nor his wife maintained his medical records and the hospital reported they have found it near impossible to access or obtain medical records from the VA Hospital.  We often remind our clients it is their responsibility to maintain their health care records and encourage them to maintain all of their records.  Please take this suggestion and get your medical records organized today.

On Friday my Dad had a bronchoscopy and the physician reported they would attempt to start weaning him off of the ventilator to see if he could return to breathing on his own.  The doctor took a few minutes to explain to us that if they were unable to wean my Dad from the ventilator the next step would be to remove the tubes in his mouth and to do a tracheotomy.  Tracheostomy (tray-key-OS-tuh-me) is a surgically created hole through the front of your neck and into your windpipe (trachea) allowing for the long-term use of a ventilator to help you breathe. The term for the surgical procedure to create this opening is tracheotomy.

Please know, there is a good chance that my Dad could have avoided all of this if his wife would have presented his Living Will to the ambulance as well as if she would have refused the ventilator.

We are fortunate in our area to have our Emergency Medical Services (EMS) recognize the “Vial of Life.”  You can alert EMS to find your health care documents, Designation of Health Care Surrogate, Living Will, Do Not Resuscitate form,  list of medications, emergency contacts, etc.… by placing an “orange colored sticker” on your front door or on your refrigerator/freezer in your home.  This sticker informs them to look in your refrigerator/freezer for your documents.  I typically recommend keeping them in a Ziploc style bag so they can easily be sighted.

When I ask the health care provider what would have prevented them from placing my Dad on a ventilator the provision of the Living Will was the first thing they mentioned along with alerting EMS with the “Vial of Life” sticker.  Please take the time right now and check if your EMS recognizes the “Vial of Life” and collect your medical information and execute a Health Care Surrogate Designation as well a Living Will with your wishes.

On Friday afternoon as our family and my father’s wife gathered around him we were able to review what a Do Not Resuscitate Form involved.  His wife was shocked to hear from the Doctor that the compressions are done with such force that ribs are typically broken and that there would be a significant amount of damage to my Dad’s body due to his advanced age and health status from CPR.  While it was difficult for her she agreed to sign the Do Not Resuscitate form.

On Saturday morning they tried to reduce the amount of his oxygen and the ventilator support, unfortunately it was a short lived experience because his oxygen levels dropped too low and they immediately had to return him to the full strength of the ventilator.  When the Doctor arrived to review his status he informed us that the maximum number of days safely on the ventilator was 10 days and if he was still alive he would have to have the tracheostomy.  Once he would have that procedure and was stabilized he would need to relocate to a nursing home that was medically able to manage tracheostomy patients.  The Doctor reported there was one nursing home in our geographical area that could provide the support needed.  He said he doubted my Dad would tolerate the procedure well due to his breathing issues and congestive heart failure.

With a little prodding the Doctor then addressed Comfort Measures Only, defined as: “Comfort Measures Only refers to medical treatment of a dying person where the natural dying process is permitted to occur while assuring maximum comfort. It includes attention to the psychological and spiritual needs of the patient and support for both the dying patient and the patient’s family.”

If his wife was willing to have the ventilator (life-support) removed my Dad would receive comfort measures only.  The Doctor predicted my Dad would not breathe well on his own and stated they would administer Morphine and Ativan to make him as comfortable as possible.  This was a difficult decision for my Dad’s wife to make, however she ultimately decided it was the right thing to do.

On Sunday morning we gathered at the hospital, around my Dad’s bed, and we each had our final moments with him and then the ventilator was removed.  I wasn’t sure what to expect, however thought he would only survive a short period of time.  After an hour or so of watching him struggling to breathe and listening to the gurgling of his lungs filling up with fluid you start to panic inside.  More medications were administered and after another hour or so he passed away.

A few years ago our 15 year old Labrador “Margo” had a medical emergency.  As a family we took her to the Veterinarian, he said there was nothing he could do to help her survive.  We all had the opportunity to hold her, and sit with her while the doctor injected medication and with two or three minutes she peacefully died.

I wish it would have been as easy with my Dad as it was with Margo.  I understand these are not everyone’s wishes, but I believe it is important for everyone to understand their decisions and the “rest of the story.”  Often when we are provided information regarding decisions to make we are only provided partial information or information someone thinks we can handle.  It is up to us to ask enough questions to make sure we understand our decisions.  There is also new vocabulary to learn, “vent,” “DNR”, “Living Will,” “CMO,” and many more.

While my Dad’s goal was live to 102 years old, the same age his mother passed away – I have no doubt he never knowingly would have wanted to have his last five days as we just experienced.

When an elderly loved one needs help at home, there are several options for Florida home health. Medicare covers intermittent, skilled care at home but most seniors (and others facing disability or chronic illness) will need some additional home care support at some point. It can be difficult to wade through the Florida home health options, so our experts are here to help!

What are my options for Florida home health care?

Privately Hiring an Individual Caregiver

We generally don’t recommend this option for several reasons. Read “The Unasked Questions When Hiring a Home Caregiver” for more detail. One of our favorite celebs, Betty White, is being sued by her caregiver, a cautionary tale about the problems that can arise when you are acting as the employer. Taxes are another important issue, as the state of Florida notes: “If you employ an independent health care professional, you should ask them who will be responsible to pay household employment taxes, income withholding taxes, and unemployment taxes. If he or she does not pay these taxes, you may be required to pay them.”

Additionally, we’ve talked to a number of families over the years who had a caregiver get injured on the job. Without worker’s compensation insurance, this can be a costly problem. Other concerns include caregiver oversight and management, handling backup care, what happens in disaster situations (e.g. Florida hurricanes) and when additional care is needed.

Agencies Regulated by Florida (see this chart for a side-by-side comparison):

• Home Health Agency (HHA): Florida home health agencies, both Medicare-certified and non-medical, are regulated by strict guidelines by the state. Agencies must take steps such as developing care plans, documenting client’s advance directives, providing detailed disaster plans approved by the state, quality assurance and handling the normal duties of an employer (taxes, managing hours worked and insurance). Staff is required to have training in Alzheimer’s/dementia and agencies must carry liability and malpractice insurance.
• Nursing Registry (NR): A registry matches health care professionals like home health aides, CNAs and nurses with clients. The healthcare professionals are independent contractors, not employees of the registry. If you choose to use a nurse registry, make sure to ask about/consider insurance coverage, backup care and supervision. Different agencies may offer more extensive services than others, or you may need to create a plan for handling these issues.
• Homemaker/Companion (HCS): This is another type of agency for Florida home health services, which is only permitted to provide non “hands on” care such as errands, transportation, and household help. These services are also often provided by the 1st two types of agencies.

How can we decide which Florida home health choice is best for us?

• Think about the client’s current and future needs. For example, a homemaker/companion agency might seem fine for now, but almost all clients needing these services require some hands-on assistance at some point (even if temporarily after a hospitalization of when ill). Do you want to have to go through the hiring process over again or bring in two agencies to get the job done?
• Do family members live locally? What kind of help can they (or others) offer? If family members live nearby and can assist with oversight and employment, some of the less formal options may be feasible. If all family members are long-distance or no one has the time to handle all the tasks involved (or fly down at a moment’s notice), you would benefit from a home health agency with great HR management or hiring a care manager to manage the situation. Don’t underestimate what is involved in managing eldercare needs.
• Assess true costs. Is saving money on the per hour cost going to save money overall? Consider employment taxes, insurance needs, and opportunity costs (i.e. if a family member will handle oversight and employer duties, what time, and therefore opportunities–including quality time with your loved one, does this cost?).
• Weigh risks in light of the client’s situation.  It is important that all parties understand the potential risks to a client’s assets (for example, if facing a lawsuit like Betty White, or costs from an on-the-job injury or fraud/theft with little recourse) and how different scenarios may play out.
• Work out a budget and assessment of options. Our care managers can provide a personalized assessment, advising of pitfalls you might not have considered. You may decide to run some risks or deal with an occasional problem for a significant cost savings, or the care manager may be able to help you save in other ways or tap into benefits programs. There are often unique ways to set up a plan to better meet your loved one’s needs while not compromising quality.
• Consider all available resources. We’ve had clients in the past who owned a company or made other arrangements to manage employees. There may also be family members who are willing to take on certain roles. You may have professional advisers or a care manager who can assist with specific needs. Tap into programs or resources to stretch your budget or reduce the level of care needed.
• Beyond just which type of Florida home health provider you choose, it is important to research and feel comfortable with who you’re hiring. Ask for references and/or QA survey results, find out more about their process and policies, understand fees in detail, and make sure you are comfortable with the management and direct care providers.

Want the best experts to guide you in this process? Contact our team today (727-447-5845) to find out how we can help make your eldercare journey easier.

You might also be interested in “Concerns about Hired Caregivers“. If you run into trouble with a caregiver, this guide will help you know your options and where to turn for help.

Recently we received a call from a very anxious out-of-town daughter looking for help to find an assisted living facility for her 78-year old Mom.   After several emergency room visits the doctor let Mom know it was unsafe for her to live alone and highly recommended she move to an assisted living facility.  Daughter reported Mom’s income is $900.00/month and she has one bank account with $12,000.  Mom’s home has a small mortgage and her equity is approximately $30,000.

Helping the daughter calculate how much Mom can spend each month is difficult to calculate since there is no way of knowing how long Mom may need the assisted living care.  It’s even harder to find a facility in the Pinellas County area that charges less than $2,500 per month that you or I would want to live in.  Unfortunately there is no quick fix for this predicament.

Nursing home care is a Medicaid entitlement program in the state of Florida.  What does that mean?  If a physician certifies you need the level of care a nursing home provides and your income and assets fall within the program limits, Medicaid must pay the nursing home after you have paid them your income each month.  The average monthly cost of nursing home care according the State of Florida is $8,346.  This is a safety net if you need nursing home care.

If the physician certifies you need assisted living level of care or home care and your income and assets fall within the Medicaid program limits, you must call the Aging and Disability Resource Center (ADRC) and get placed on a waiting list for financial assistance.  The waiting list is long, there are over 50,000 Floridians on this list.  How much financial help will they get when their slot comes up to number 1?  Medicaid will pay $1,100 per month towards their care costs (not room and board costs).

Our client has the predicament of being extremely careful with funds while hoping they eventually get a slot from the waiting list.  If she runs out of money prior to getting a slot on the waiting list she will need to relocate to a facility that only charges $900 per month or hope she meets the level of care for a nursing home.  What type of choice is that for our elder?

Please join us Tuesday, April 5, 2016 1pm – 2:30pm for a workshop:  How to Pay for Long Term Care.  We look forward to seeing you then.

LTC, or long-term care, is something more and more people understand they need to plan for in their retirement, insurance, and health planning. However, very few really understand what LTC is or how to approach planning for it. We’ll share some key LTC facts and Florida LTC costs and let you know about a great workshop coming up where you can learn from one of our area’s foremost LTC experts.

What is LTC?

Long term care is the type of care many people need for some period of time as they age. It is not acute medical care (i.e. surgery and immediate after-care or treatment for an injury or illness) but the type of “custodial care” that includes help with getting around, safety support and assistance with ADLs and iADLs.

Long term care isn’t a place (i.e. a nursing home) but can be provided at home, in day time settings (adult day care/programs), at an Assisted Living Facility (ALF), nursing home and sometimes in other settings. It can be provided by family members, and families do provide millions of dollars worth of unpaid care each year. However, many people will also need paid assistance at some point and the costs (as you can see below) can be quite staggering if you have to pay “out of pocket” (from your income and savings).

What does LTC in Florida cost?

Here is some general data from Genworth’s 2015 survey of long term care costs. Join Linda Chamberlain for our upcoming LTC workshop to learn more specifics about budgets, options and resources to pay for LTC.

Home health aide costs for Florida LTC (in-home care)

Florida ALF costs

Nursing home costs in Florida for LTC

To understand more about the various options for long-term care and the true costs involved, we encourage you to attend our upcoming LTC workshop. Linda Chamberlain, Aging Wisely founder and Board Certified Elder Law Attorney, has worked in LTC and Medicaid planning for 25 years. She will share valuable information and planning tips, as well as answering your questions.

Want to understand what Medicare covers? Confused about Medicaid v. Medicare? Considering buying LTC insurance or worried about how you’ll cover costs from your retirement savings? Want to understand why planning is worthwhile and how you can maximize your choice as you age? This workshop is for you!

How to Pay for Long Term Care

Tuesday, April 5, 2016

1:00-2:30 PM

1180 Ponce de Leon Blvd., Suite 700, Clearwater, FL 33756

Click here for the LTC workshop flier and RSVP to hold your seat today (space is limited!). You can call us at 727-447-5845 for reservations or questions.

You want to know the secrets to a long, healthy life? They aren’t as mysterious as some marketers would have you believe. There is no magic pill or drastic diet or exercise program that guarantees a long life. Researchers have studied “blue zones” where people are known to live long, active lives and have found the commonalities among these people. Healthy food is one of the biggest components of their longevity. This month, we are focusing on healthy food made simple: tasty recipes, resources for quick but healthy food, and ideas to add variety to your diet while including more healthy food.

Baby Boomers have the longest life expectancy of any generation thus far, yet higher levels of hypertension, diabetes and high cholesterol, obesity and disability than the generation that came before them. Healthy food can reduce the health risks associated with these issues, for a long and HEALTHY life.

Healthy Food=Sexy Diet

Variety is actually one of the keys to getting healthy food in your diet. Anything can be okay in moderation…the key is to have varied, healthy food as the bulk of your “fuel”. Healthy food doesn’t need to be boring and tasteless. It can be varied and delicious, and will definitely give you added energy and vitality. Enjoy your food, try new things and feel better…simple recipe for longevity, but not always so easy to implement (which is why we’re here with help).

Plant-based foods should make up the bulk of your diet, according to the best health and medical researchers. At a Johns Hopkins’ women’s conference last year, several physicians reiterated a plant-based diet as the key to healthy aging.

How can you add more variety while enjoying your meals?

• Add veggies into your meal and slightly decrease the size of animal protein, or go vegetarian one or two days/week. Taste a variety of veggies and try different preparation methods.
• Add veggies to foods you already like and experiment with styles of food you like (Indian vegetarian curry, veggie sushi, spicy Mexican dishes with healthy beans, comfort foods revised with added vegetables or lower calorie/fat options).
• Try something new. Pick a new recipe, grab a new fruit or veggie at the store; check out this A-Z of veggies.
• Cook extra, so you have less work and more healthy choices on hand.
• Check out these easy tips for sneaking more fruits and vegetables into your diet, including prep ahead Meatless Mondy recipes, seasonal guides and on-the-go options.

As We Get Older We Need More “Bang Per Bite”

Nutrition needs increase as we get older, while caloric needs decrease. Therefore, we need nutrient-dense foods (to get the most “bang per bite) to fuel our bodies for energy and wellness. Healthy food isn’t just about keeping weight down; healthy food keeps us well and helps us recover. Medications can affect nutrition: statins increase the need for Coenzyme Q10 and acid-blocking meds reduce absorption of B12 (lack of which is associated with dementia risk).

The tips above are great for getting more nutrient dense foods. Temptation is all around us today, but so are options. Even the gas station or convenience store has healthy options (hidden among many very unhealthy ones) so you can grab something pretty healthy on-the-go. On a recent trip, I picked up the following snack at Walgreens: a “protein pack” (nuts, cheese and lean turkey) and a banana. At the airport, I was able to grab a pack containing two types of sliced apple and a small thing of cheese and crackers. They also had delicious yogurt, Kind bars and several types of salads. The truth: I felt better and I’d rather eat a nice meal or get myself a treat I’ll enjoy, rather than something unhealthy but pretty tasteless from a convenience store or airport.

• Eat lean foods with high levels of nutrients. Here’s a great list of “the world’s 100 healthiest foods“. This is great because not only are they healthy, but readily available and pretty affordable.
• Consume more fiber. You will feel fuller and fiber can help with weight control and of course, digestion.
• Cut sodium. Herbs can be used to flavor foods and reduce the need for salt. Processed foods are the worst culprit, though, so having convenient fresh foods available is your best weapon.

Here are some additional tips from EasyLiving about eating a varied diet and doing it on a budget.

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