Dementia Patients and Grief



The death of a loved one is difficult for anyone, but it is a special challenge when someone in the family has dementia. It’s hard for family members to know how and when to tell the person with dementia about the death. And what should they do when the person doesn’t remember?

Coping With Losses

People with dementia have had many “little deaths” in the course of their disease — things like losing their independence and the ability to drive, read, cook, or enjoy hobbies. Memories and relationships are huge losses.  These losses are stressful for people with dementia and their families.

How people with dementia cope with loss is affected by many things, including: the stage of their dementia, their relationship to the person who has died, how often they were in contact with that person, and their personal way of grieving

Grief Process

For people without dementia, recovery from a death usually involves accepting the reality of the loss, learning to live with it, and finding a new “normal.”  For most, the pain of the loss can transform into beloved memories.  For someone with dementia this process is often impossible.

People with dementia who are grieving are often agitated and restless. They may sense that something is not right, something is missing. They may confuse one loss with another. A recent death may stimulate the memory of loss from childhood. It can be stressful for family members to decide when and how to tell them about the death of a loved one — and even how often to tell them. Repeatedly telling a person with dementia about a death can make family members’ grief more painful.

Telling About a Death

Here are some hints for telling a person with dementia about a death:

    • Tell the news as soon as possible. They will sense that something is wrong and need information to understand, even if just for that period of time.
    • If you are too emotional to talk to them, find someone else — maybe a friend or healthcare professional.
    • Choose a time to talk when the person with dementia is well rested.
    • Use short, simple sentences. Don’t give too many details; this may overwhelm them.
    • Answer questions as honestly as possible.
    • Use clear words like “died” instead of “passed away” or “at peace now.”
    • Try not to protect the person from the truth by suggesting that the person who has died is away and will return later. This can cause worry and agitation later when the person does not return.
    • You can support them with physical touch, such as a hug or holding hands.
    • Consider involving the person with dementia in funeral planning, assigning a simple task. This will help the death be more real for them. They may recognize the rituals around death and act appropriately.
    • Plan for someone to be with the person during services who can also take them out if they become agitated.

Accepting Death

Here are some ideas of ways to help the person with dementia accept the death:

    • Speak in the past tense about the person who has died. For example, “I loved Mom’s holiday cookies.”
    • Talk with them about the person who has died and express your sadness. “I sure miss Dad. He always made birthdays so fun, didn’t he, Mom? Remember when he….” Bring out pictures and tell stories if this helps their grief process.
    • Accept how often they want to talk about the person who has died—perhaps frequently, not much, or maybe not at all.

If over time they continue to ask for the person who has died, there are some things you can do. In the beginning, gently remind them that the person has died. If reminding them becomes upsetting, you can try these ideas:

    • Respond to the emotion under their words, feelings like sadness, longing, fear, distress, suspicion, anger, concern, or confusion. You can respond to what you see:
      • “You sound really frightened (or lost, or angry, etc.) to me. Let me help you with that.”
      • “You must really be missing her. Tell me what you miss most.” Share your own feelings: “I miss her, too.”
    • Check their mood at the moment. If the person is unaware and not distressed, you don’t need bring up the reality of what has happened.
    • Look for patterns in the times they ask for the person who has died. Look for an unmet need. For example, if the person who has died usually brought them coffee in the morning, the change in this routine could be distressing and remind them that their loved one is not there.
    • Use distraction only when other ways of dealing with their grief are not working.

Each family has to find what works for them, and then try to be as consistent as possible. You may want to write out a simple plan for all family members and visitors to follow.

You can be most supportive to the person with dementia if you also take care of your own needs and get support.  We encourage family members to find support to help them cope with the painful, frustrating, lonely and sad feelings that they may feel. Supporting the person with dementia takes patience, but family members should remember to be patient with themselves as well during this stressful experience.

Complete Article HERE!


Taking Over Your Aging Parents’ Finances


When to step in — and how to guide their financial future


In the year 2011, the Baby Boomer generation started turning 65. Over the next 13 years, 10,000 Boomers will reach retirement age every day.

For the adult children of the Baby Boomers, these are not abstract statistics but real-life turning points that can provoke uncertainty and anxiety. But consider the advice of certified financial planner and author Lise Andreana:

“There is no time like the present to begin preparing for your aging parents’ financial future. Being proactive can help minimize a great deal of stress and uncertainty down the road — for your parents, yourself, and your entire family.”

The Simple Dollar is here to help you begin the journey of guiding your parents through this stage of their lives. We’ll cover how to approach the conversation, documents you’ll need, costs to consider, and more. Let’s get started.

Table of contents

Broaching the subject
Power of attorney
Document checklist
Long-term care costs
The sibling situation
Additional resources

The Talk: How to handle a sensitive subject

Every family is different, and yours may have its own quirks or hangups about money. Although no size fits all, here are some suggestions on having The Talk with your parents:

When is the right time?

Many senior care experts recommend following the 40/70 Rule. As you approach 40 and your parents approach 70, it can be the most opportune time to discuss financial issues, as well as long-term care, estate planning and other relevant topics.

It’s better to address the situation proactively than to wait for a crisis to unfold, which could force your family into making decisions on the fly.

Are my parents already having trouble?

Be on the lookout for warning signs that your parent may be struggling to manage his or her finances, which can include:

  • Unpaid bills
  • Bounced checks
  • Calls from creditors
  • Unusual or frivolous purchases

What’s the right approach?

To help prevent conflict with your parents when you talk about finances, consider the following.

  • Keep the circle small.
    Discussions involving a few key people can be less intimidating than a full-blown family meeting that could leave your parents feeling like you’re ganging up on them.
  • Focus on positives, not negatives.
    Don’t frame your concerns in terms of physical or mental decline. Keep the focus on a bright future for the entire family.
  • Treat them as peers and equals.
    Help your parents understand that you’re trying to look out for them, not look after them. Invite them to join an ongoing conversation.
  • Find an ally.
    Your parents might be more receptive if your family attorney or financial planner joins the discussion in the role of an objective third party.
  • Make a show of solidarity.
    This subject presents an opportunity to do a thorough check of your own finances to see that everything’s in order. This way, your parents might not feel that you’re singling them out or passing judgment.
  • Avoid fighting words.
    Certain words and phrases — including always, never and nothing — have a tendency to put people on the defensive and shut down communication. It can happen in any kind of personal relationship, including parent-child.

When in doubt, preserve your parents’ dignity. Be aware of the potential for wounded pride — speak respectfully and tread lightly.

Expert opinion

“Start the conversation early. Put in place a plan your family can follow when your parents can no longer make decisions on their own. … It’s important to ask questions and help your parent come to a decision on his or her own terms.”

Terri Rasp
Director of Sales, Analytics, and Training

StoneGate Senior Living, LLC

Power of attorney

A power of attorney, also called a POA, is a legal document that grants a person or organization (known as the agent or attorney-in-fact) the authority to act on behalf of someone (the principal) in specific financial, legal and health-related matters.

A POA with you as the agent and your parent or parents as principal could play an integral role in helping you protect their financial well-being. With a power of attorney in place, you will be able to act quickly if a parent suffers a medical emergency, for example, or experiences a steep decline in mental competence.

Should I use a lawyer for a POA?

The answer is, most likely, yes. You don’t necessarily have to go through an attorney, but it’s probably the wisest course of action. The power of attorney process can vary from state to state, and trying to go it on your own could result in a costly oversight.

Unless you’re an attorney or a financial adviser, you may not have the expertise to navigate these waters. Also important is the fact that a professional often brings some much-needed objectivity to a situation where emotions can cloud the issues.

Can I get a POA on my own?

Some legal advice websites let you download a printable version of your state’s POA form. However, bear in mind that you’re dealing with the complexities of legal documents and contracts. There’s no shame in seeking the advice of your family attorney, your financial adviser, or both to help you craft a POA that addresses your family’s specific needs.

What’s the best time to get a POA?

The key factor in a child-parent power of attorney is obtaining it proactively, before the parent loses the ability to manage their own affairs.

What kind of POA should I get?

A lot depends on the current status of the parents and when the family wants the POA to take effect. An attorney may recommend a durable power of attorney, which contains a durability provision to ensure it remains in effect if the principal’s condition changes. The change in status could be a sudden medical issue that leaves the parent debilitated or a deterioration in mental capacity.

A power of attorney covering financial affairs differs from a health care POA, which means you’ll need to address those issues separately.

What if my parent has dementia or Alzheimer’s?

Depending on the laws of your state, getting a POA for a parent who has dementia or Alzheimer’s disease may require a letter from a physician affirming that your parent understands what the POA means and can legally consent. If a parent is deemed unable to meet that standard, another option may be for the child to become an adult guardian or conservator instead — a process that would require a judge’s approval.

Is a power of attorney the same as a living will?

No, there’s a difference. A living will expresses the signer’s wishes regarding medical treatment in the event he or she loses the capacity to make decisions (for example, whether extraordinary measures should be taken to preserve their life or resuscitate them). This kind of document is sometimes called an advance health care directive.

As with a power of attorney, state-specific versions of living wills are available online. Still, it’s wise to consult an attorney about the specifics of your situation.

Obtaining power of attorney: 3 key steps

Expert opinion

“Prior to cognitive decline, I advise my clients to help their parents establish the proper paperwork. This includes the creation of a will, durable power of attorney, health care power of attorney, and advanced directives. The power of attorney forms are very powerful documents that should only be in the hands of somebody your parents trust. Whether that is a family member or a professional, it is up to them.”

Nate Byers

JBC Wealth Advisors, LLC

Financial document checklist

Here’s a list of important documents for reviewing a parent’s finances. These records will help you get a better idea of income and financial obligations. Double-check this list with your financial adviser to see if anything needs to be added.

_ Bank accounts
_ Credit card statements
_ Monthly bills (utilities, rent/mortgage, subscriptions, etc.)
_ List of loans and other debts
_ Social Security statements
_ Social Security benefit verification letter
_ Pension, 401k and annuity documents
_ Tax returns (for three to seven years)
_ Investment documents (savings bonds, stock certificates, brokerage accounts, etc.)
_ Insurance policies — life, health, and property
_ Vehicle titles
_ Property deeds
_ Dues-paying memberships (HOA, AARP, clubs, etc.)
_ Birth certificates and marriage licenses

Don’t forget …
_ List of their usernames and passwords for online customer portals
_ Combination/keys to their safety deposit boxes

Expert opinion

“The first thing that children should do is to start aggregating information on the parents’ financial information. Help your parents consolidate their holdings. Fewer bank accounts can save you tons of time.”

Scott W. Johnson
Owner, WholeVsTermLifeInsurance.com

Long-term care costs

When looking at long-term care solutions, be aware that private insurance and Medicare have some limitations. While Medicare and insurance do provide coverage for medical treatment and prescription drugs, custodial care such as long-term care facilities and home health care may be a different story. As a 2013 study points out, Medicare:

  • Pays only for “medically necessary care in a skilled nursing facility” — which is not the same as an assisted living center.
  • Pays for home health care “under very limited circumstances and for brief stretches of time.”

In some unfortunate cases, coverage gaps in Medicare and private insurance can lead to families exhausting financial resources (known as “spending down”) until their parents qualify for Medicaid. To help prevent this worst-case scenario, you may want to consult a financial planner about some proactive options such as:

Long-term care insurance (LTCI)

Expenses covered by long-term care insurance generally include assisted living, nursing home, adult day care, Alzheimer’s care facilities and hospice. The key is encouraging parents to buy coverage early, before they develop health problems.

Pros and cons include: LTCI can be pricey, although it could cover some expenses that Medicare or private insurance do not.

Long-term care benefit plan

This option involves converting a life insurance policy into funding specifically for long-term care. These insurance conversions are also called life care assurance, Medicaid life settlement, or life care funding. It’s commonly used as part of a spend-down strategy to receive Medicaid eligibility.

Pros and cons include: This strategy can provide an immediate source of funding. However, the family will lose the death benefit that an unconverted insurance policy would have provided.

Reverse mortgage

Some aging homeowners turn to reverse mortgages (also called home equity conversion mortgages) to turn their equity into cash while still retaining ownership.

Pros and cons include: Although it can provide a cash infusion, using a reverse mortgage to pay for senior care is a potentially risky, “last resort” type of move. Not everyone will qualify, and defaulting could lead to loss of ownership.


Unlike Medicare, Medicaid is jointly administered by the federal government and individual state governments. As a result, eligibility requirements and other rules vary from state to state.

In general, though, Medicaid recipients must have low incomes and assets with very low value. The program is intended to benefit the poorest Americans, so many middle-class families likely don’t qualify.

To get more information, check with the agency that manages Medicaid in your state. You can also contact an elder law attorney in your state or visit these websites:

Claiming your parents on your tax return

To claim a parent as a dependent, your financial support for them must be substantial — at least 50% of the total cost for housing, food, medical care and other items. Also, the parent can’t earn more than the personal exemption for that tax year (which was $4,050 in 2016).

So, unless your parent has a very low income and you pay more than half the cost of keeping them cared for, they probably wouldn’t qualify as a dependent. If the parent does qualify, you could receive tax benefits such as the Dependent Care Tax Credit and reduced taxable income.

To get definitive answers, ask your tax preparer. You can also call the IRS or make an appointment at a local Taxpayer Assistance Center.

Expert opinion

“When budgeting for an aging parent, Medicare costs need to be factored in. They pay a monthly premium for Medicare Parts B and D for life and then also a Medigap or Medicare Advantage plan to pay for the things like deductibles and coinsurances that Medicare doesn’t cover.”

Danielle Kunkle
Co-founder, Boomer Benefits

The sibling situation

Among adult siblings, the care of aging parents has the potential to spark conflict like few other subjects. Handling parents’ finances is no exception.

It’s not uncommon for someone who takes the lead as caregiver to feel overburdened and resentful toward a sibling taking a less active role. Fortunately, a personal care contract or caregiver agreement can help ensure that the sibling who makes the most sacrifices is at least financially compensated.

Under this type of agreement, parents or other family members agree to reimburse the family member acting as caregiver. Compensation options include:

  • Direct payments (the income will be taxable)
  • An estate plan, or additional consideration in the parent’s will
  • Transferring homeownership to the caregiver
  • A life insurance policy with the caregiver as beneficiary

An elder law attorney can help you draw up a caregiver agreement. As for the form that compensation takes, families should think carefully about options that could lead to future conflicts between siblings (specifically, an estate plan or home transfer).

About those conflicts…

Even if you have a financial arrangement in place, don’t forget that sibling caregivers often have emotional needs in addition to financial ones. Expert tips on how to defuse conflict and increase support include:

  • Stay in communication, even if it’s just a weekly call
  • Arrange for someone else to step in every now and then so the caregiver can have time off
  • Ask for outside help (family counselors, social workers, clergy, etc.) when conflict becomes unmanageable

Expert opinion

“Personal care agreements are valuable for two very different reasons. One is emotional, for the family caregiver to feel as though they have a ‘real’ job and have at least a written record of what they need to do. Many have to cut back on work or stop working during a period of caregiving. The agreements can also serve as a record of the work done for siblings.”

Michael Guerrero
Senior Benefits Adviser

Elder Care Resource Planning

Complete Article HERE!


For Patients With Heart Failure, Little Guidance as Death Nears


Americans are living longer with heart disease, managing it as a chronic condition. But there are few rules for these patients as they near the end of life.

Ricky Hurst, whose heart is failing, was told by doctors to get his affairs in order as his condition worsened. More patients like him are living longer with heart failure, but there are no widely accepted guidelines for care as they near death.


Ricky Hurst’s doctors told him last year that there was nothing more they could do. His heart was failing and he should get his affairs in order. The end was coming.

His family gathered. He spoke to his pastor and resigned himself to death. “If it was meant to be, it was meant to be,” he said.

But. Mr. Hurst, 56, a former ranger and school football coach in Jackson, Mich., is still alive, although his heart continues to weaken. And patients like him are raising a new dilemma for doctors.

Heart disease once killed ruthlessly and quickly; patients like Mr. Hurst succumbed to heart attacks and sudden death from cardiac arrest. But with improved medical care and implanted devices that bolster the heart, a growing number of heart patients survive for years, even decades, coping with a chronic, progressive condition punctuated by crises and hospitalizations.

Their disease at that point is called heart failure — their weakened heart cannot pump enough blood to supply the body’s needs. The number of Americans with heart failure increased to 6.5 million in 2011-2014 from 5.7 million in 2009-2012, according to the American Heart Association.

More than 10 percent of those over age 80 have heart failure, and more patients are living longer with advanced disease. Even as the death rate from heart attacks is falling, the figure for heart failure is rising.

Yet there are no widely accepted guidelines for dealing with these patients as they near death. Cancer specialists regularly move their patients to hospice at the end of life, for instance, but few cardiologists even think of it. Heart patients account for just 15 percent of hospice deaths, while cancer patients make up half, according to a recent study.

Mr. Hurst carries a battery-powered and surgically implanted heart pump.

That paper, published in the Journal of the American College of Cardiology, reviewed a number of ways in which heart patients are let down at the end of life. Implanted defibrillators often remain activated until the very end, for example, even for those in hospice.

A fifth of heart patients with defibrillators get shocked by them in the last few weeks of life, and 8 percent get shocked minutes before dying. Most patients are never told that they can ask that the defibrillators be turned off.

“Getting shocks at the end of life is not really helping patients live longer or better,” said Dr. Larry Allen, a heart failure specialist at the University of Colorado and an author of the study.

“We shouldn’t have a single one of these cases happening,” said Dr. Haider Warraich, a cardiology fellow at Duke University and first author of the study.

Experts often focus on the strides made in preventing and treating heart disease. Its incidence has declined by 70 percent in the past 50 years. People have heart attacks later in life than they used to, are more likely to survive them, and often live for years afterward with few or no symptoms.

“We are very proud” of that progress, said Dr. Patrice Desvigne-Nickens, a medical officer at the National Heart, Lung and Blood Institute.

Still, she added, cardiologists and their patients should be discussing end-of-life options and palliative care earlier in the course of heart failure.

“Everyone is uncomfortable with end-of-life discussions,” she said. “The field of cancer may be ahead of us. We should learn from looking at their example.”

But cardiologists thrive on the dramatic saving of lives, said Dr. Michael Bristow, a cardiologist at the University of Colorado Denver. They devote their professional lives to rescuing patients having heart attacks and bringing them back from the brink.

End-of-life care is not typically their focus; neither do they spend much time pondering what some of their patients may experience in the future. “Those who go into cardiology are not necessarily ones who want to deal with death and dying,” Dr. Bristow said.

The very nature of end-stage heart failure makes it all the more difficult to prepare.

“Very few patients understand the trajectory of the disease,” said Dr. Lynne Warner Stevenson, a heart failure specialist at Vanderbilt University. The path has peaks and valleys, but as the patient declines, each peak is a little lower than the one before.

And often doctors do not tell patients what to expect.

“Unfortunately, when you have patients with a chronic illness like heart failure, everyone thinks someone else will talk about it,” Dr. Stevenson said. “Too often, no one takes ownership of the last stage of the journey with the patient.”

Dr. Ellen Hummel of the University of Michigan, one of a small number of doctors specializing in cardiology palliative care, said the typical patient with cancer will usually experience a “fairly predictable” decline.

“They will be less able to take care of themselves,” she said. “They will be more symptomatic and come back to the hospital more frequently. And once this starts, it will probably continue until they die. Most people can see the end coming.”

But patients with end-stage heart failure are more likely to have wild swings, Dr. Hummel said, veering from feeling better to being terribly ill.

“It is confusing to both the patient and provider. Are they actually dying, or can we rescue them from a particular episode of worsening?”

Dr. Harlan Krumholz, a cardiologist at Yale University, agreed: “The issue is knowing who is really at the end of life.” For patients with heart failure, seesawing between good periods and bad, it can be very difficult to make the call.

Dr. Allen recently discussed all this with a patient, Ed Harvey.

Mr. Harvey, 75, has an implanted defibrillator, and his heart is weakening, pumping progressively less blood. Dr. Allen gave him medications that helped for a while, but, Dr. Allen said, “we have maxed out on what can be done.”

He can’t say with any certainty how long Mr. Harvey has. But now is the time, Dr. Allen told him, to talk about the end of life.

Mr. Harvey still feels pretty good, but “when you have congestive heart failure and it is not getting any better, you know that day is going to come,” he said.

He has been living with heart failure for more than a decade, and fears becoming a burden as his heart gets worse. It is now so weak that the only medical option left is an implantable pump. He knows that soon he will need full-time care.

“I have elected that if it got to that point,” he said, “put me in a hospice and let me go.”

Complete Article HERE!


This might be the most egregious tax proposal of them all


Business Insider explains one of the Republicans’ most egregious proposed changes in the tax code:

The Republican tax plan repeals an itemized deduction that applies to healthcare expenses. That’s key for families with high medical costs, like those dealing with chronic conditions that require medical devices and other expensive equipment. Right now, those expenses can be deducted from their taxes, but under the Republican tax plan, they wouldn’t be able to.

Under current law, individuals who spend over 10% of their income on medical expenses are allowed to deduct part of those costs from their taxes. The proposed new bill would remove that deduction. According to the Internal Revenue Service, for 2016 taxes, individuals were able to deduct in an itemized way “only the amount of your unreimbursed allowable medical and dental expenses that is more than 10 percent of your adjusted gross income [AGI].”

Who spends more than 10 percent of his or her AGI on medical expenses? Generally people at the end of life in nursing-care facilities, where many expenses are not covered by Medicaid or Medicare. CNBC reports:

“This would be a joke if the consequences weren’t so serious,” said Brad Woodhouse, campaign director of health-care advocacy group Protect Our Care, in a statement. “Republican leaders are determined to raise health-care costs for middle-class families who need it most — in this case people with high medical costs or those paying for long-term care.”

While it’s not a widely used tax deduction — about 5 percent of tax filers claim it — for the old and sick it can be significant.

It tends to be mostly … older people who do not have long-term care insurance, and end up in a nursing home,” said Richard Kaplan, a professor who specializes in tax policy and elder law at the University of Illinois College of Law.

The cost of living in a nursing home can easily run up to tens of thousands of dollars per year and wipe out the savings of elderly residents who are paying out of pocket. The deduction can be an important offset to taxes those Americans would owe on their retirement savings distributions.

“For people who are receiving long-term care and are paying for it themselves, this is going to be a huge deal,” said Kaplan.

Andy Slavitt, former head of the Centers for Medicare and Medicaid Services, tells me, “The medical deduction is one of the most popular and important tax credits, particularly for all of us as we age.” He adds, “It keeps many seniors and families out of bankruptcy when in need of end of life care. Ask anyone with chronically ill kids, parents, or spouses.” These are not only very sick, old people but very sick, old and non-rich people. (“AARP has calculated that about three-quarters of those who claim the medical expense deduction are 50 or older, and more than 70 percent have incomes $75,000 or below. Many of those expenses are for long-term care, which is typically not covered by health insurance. Long-term care can cost thousands or tens of thousands of dollars a year.”)

This move doesn’t recoup much revenue in the grand scheme of things. (“It will cost the government about $10 billion a year in lost tax revenues in 2018 and about $144 billion over the next 10 years.”) So why do it? Well, Republicans have given so many tax breaks to the rich and corporations that they are scrounging for ways to take benefits away from others.

Consider this: The giveaway to rich heirs by removing the estate tax and allowing heirs the “stepped-up basis” adjustment in assets comes to $300 billion. They are literally taking money from nursing home residents so that rich heirs won’t have to pay a dime of inheritance taxes on estates exceeding $11 million (for a couple).

Or think about elimination of the alternative minimum tax, something that costs President Trump and other very rich individuals millions or tens of millions. Repealing it would cost $695.5 billion. Literally, they are taking money from people in nursing homes so that Trump and people like him can pay less in taxes.

There’s only one word to describe this sort of trade-off: obscene.

Complete Article HERE!


The Painful Choices End-of-Life Brings for the Caregiver


by Kay Bransford

Caught off guard

The final days for both my mom and dad were unexpected. When we got their initial diagnoses in 2012 — Alzheimer’s for dad and vascular dementia for mom — we were told they could live for a decade or more.

Early on, I fought to be their caregiver. Due to the nature of their conditions, they just didn’t recognize how many issues they had managing their day-to-day lives. Eventually, they accepted my help. I adapted to being the primary adult family caregiver and absorbed the additional responsibility to advocate for their needs.

I wasn’t prepared for how hard it would be to make decisions about life and death for my parents. Thankfully, I was very clear on their wishes. I spent most of my adult life living near my parents and visited them two or three times a week. On many occasions, as my parents were watching or caring for their own parents, they would comment on how they would like to be treated.

Over the years, my mom must’ve told me at least a hundred times that “If I end up like my mom, put a pillow over my head.” Obviously, I couldn’t do that, but it reinforced the fact that she wanted quality of life, not just life. My dad wasn’t as conversational about his wishes, but when he would share what was happening to colleagues and friends, we would discuss how our family might face the same situations. In those moments, I also learned what was important to him.

In 2013, after my parents moved into an assisted living community, life and caregiving became much easier, at least for a while. The biggest issue was handling the multitude of calls to come visit. Sadly, my parents never remembered when I visited. They would often call me while I was on the car ride home to ask when I was stopping by.

What’s wrong with dad?

In the spring of 2013, I noticed that my dad was starting to drool, and on some visits, his speech was a little garbled. The staff doctor at the assisted living community didn’t find anything unusual and felt that this was likely related to the Alzheimer’s. I wanted to be sure, so I set up an appointment with a specialist.

The specialist didn’t find anything out of the norm. My parents had dentist appointments coming up, so we decided to wait and see whether the dentist noticed anything unusual.

Unfortunately, the appointments my parents had with the visiting dentist came and went. When it came time to see the dentist, they’d both declined to be seen. They were put back on the dentist’s wait list, but I didn’t want to go that long without conclusive information about dad’s symptoms.

Instead of waiting for the dentist’s appraisal, I requested a swallow consult with the community’s speech pathologist for dad. I was surprised to learn that my dad’s tongue seemed to be paralyzed. My dad was immediately referred to the doctor at the assisted living community. The community doctor found a growth on the back of dad’s tongue and suggested that we see a specialist for mouth cancers right away.

Within a few days, the specialist confirmed that dad had a tumor. The tumor tethered his tongue, which prevented him from being able to move it to swallow or speak clearly. We learned that dad had options for treatment, but they would be extensive: chemotherapy, radiation, and a feeding tube. Thankfully, one of my brothers was able to come to town and help me figure out how to best help our dad.

Deciding what comes next

Two months before the doctor diagnosed dad’s tumor, our parents celebrated their 60th wedding anniversary. As their children, we were proud that we could keep them together as they were both living with similar stages of different types of dementia. There aren’t many options for couples who both need memory care.

Although they were together throughout dad’s new diagnosis, we knew that our mom didn’t understand what dad was facing. What we did know was that they were better as a pair, and we wanted to see if we could get them more time together. We were raised to put up a fight for the things we wanted, and we were prepared to go into battle for dad.

Getting his teeth cleaned by a specialist was the first step in getting treatment for his tumor. In order to get his teeth cleaned, he had to get cleared by a cardiologist for the procedure. This is because they would have to sedate him during the teeth cleaning.

It wasn’t until this meeting with the cardiologist that we realized just how weak he was. During the appointment, dad fell asleep on the examination table, something he would do during the many appointments to come.

We realized that if we moved forward with treatment for the tumor, it would create even more discomfort for our dad. Due to the nature of his dementia, he was already experiencing discomfort in his daily life. It seemed senseless to add yet another layer of suffering when recovery from the tumor wasn’t guaranteed.

We understood that it was time to meet with the hospice doctor to discuss palliative care and make dad as comfortable as we could for the rest of his life. Still, it was hard for us to absorb the reality that our father, a multiwar veteran, was going to die from a cancerous tumor on his tongue.

Dad’s tumor was diagnosed on August 27, 2013, and on September 27, 2013, he passed away in a hospice center. I’m thankful it was swift, but it happened so fast that I was thoroughly in shock, as were we all. Once we realized how much pain he was in, we were happy that he didn’t linger.

For whatever reason, my mom, siblings, and I decided we wanted one last family picture of us surrounding dad’s body. I’ve never seen 5 people look so forlorn in any photograph before or since.

Living with the loss

The coming days, weeks, and months were incredibly difficult to manage. Not only was I grieving for my dad, I was second-guessing my ability to be the family caregiver. I was also trying to figure out how to help my mom who, due to her dementia, couldn’t remember that her husband died.

I am now thankful that we took a picture with dad in his hospice bed — it turned out to be something I could share with my mom. Although many people will tell you to never remind someone with dementia about the loss of a loved one, I felt that it would be more harmful not to tell her.

My mom would spend her time roaming around the community looking for dad and grew increasingly anxious when she couldn’t find him. I wanted her to be able to grieve his loss. When I visited, I would bring pictures of dad, share a happy story about him with mom, and mention how much I missed him.

During the first month after dad’s death, mom became very combative with the other residents; before long, she was getting into physical fights with other people in the community. This was a new behavior for her, and it was unlike my mom to be physical.

I was called in to meet with the community’s director who told me we needed to find a way to help my mom manage better in the community or she would have to move out. They suggested we hire a personal care assistant (PCA) to help her manage her day. We realized that it was time to start looking into a community specifically for people who need memory care.

Helping mom adjust

We immediately hired a PCA after meeting with the community’s director. Due to her dementia, mom already had some issues with paranoia. Unfortunately, bringing a PCA in only made mom more paranoid. She felt like someone she didn’t know was constantly following her.

Mom was generally suspicious of suggestions from someone she didn’t know well. This meant that she had a hard time connecting with most of the residents and staff in her community. Without dad, she was truly alone much of the day.

I also hired an aging life care manager to help me find the best memory care community for mom. She helped me understand and recognize the key attributes of a good memory care community.

We needed a community with:

  • scheduled activities that my mom would enjoy
  • active reminders about upcoming activities or events so my mom wouldn’t miss out
  • a standardized menu so that mom didn’t have to figure out how to piece together a menu of her own
  • community cues to help mom recognize how to get to her apartment

Assisted living communities are designed to help people navigate physical limitations in order to complete daily functions and activities. They don’t offer activities designed for people with memory issues, and they aren’t staffed to deal with the types of behavior, like paranoia, that might present in someone with dementia.

Before we could finalize the details of mom’s move, she had a major setback. She had been complaining about back pain, so her doctor prescribed her Tramadol. Mom ended up on bedrest and behaved as if she were on hallucinogenic drugs.

We later found out that the medication caused this reaction because of the type of dementia that she had. Her doctor said that this wasn’t uncommon, but it wasn’t something we were prepared for. The possibility of such a reaction was never mentioned to me when she was receiving her prescription.

It took nearly 3 weeks for the drug to work its way out of her system. She spent so much time in bed recovering that she became weak and unsteady. Several months passed before she was able to walk on her own again.

Once mom was stable, we moved her into a memory care community. We moved her on January 17, 2015. We knew the transition would be difficult. Often, for people with dementia, switching residences can result in a recognizable decline. Although she adapted quite well, she had a fall that landed her in the emergency room after only a few months in the new community.

She was unable to fully recover from the fall and could no longer walk unassisted. To make matters worse, mom would never remember she wasn’t steady on her feet. She would try to get up and go whenever the notion struck her. To keep her safe, we brought a new PCA back on staff.

Mom lived in the memory care community for nearly a year. We were lucky to have found a PCA that doted on mom and that mom trusted. She would do mom’s hair and nails and made sure she was active and engaged in activities. It was nice to have someone I could contact to know how mom was doing on a daily basis.

Saying goodbye to mom

In December 2015, mom tipped over while washing her hands. She never hit the ground, but she complained of hip pain, so she was taken to the ER. When I arrived, I immediately recognized the significance of her injury.

Sometimes, when bones grow frail, a simple twist is all it takes to break a hip. While they took mom to X-ray, I found a private restroom and sobbed. I knew that elderly women who break a hip are at an increased risk of dying within a year of the incident.

When I met with the orthopedic surgeon, she confirmed that mom’s hip was broken. She told me that she couldn’t operate until I lifted mom’s Do Not Resuscitate (DNR) order. I was taken aback by the surgeon’s request.

When I asked her why, she said that they’d have to put in a breathing tube. I told her that if my mom died on the table she wouldn’t want to be brought back to a life with dementia. The surgeon repeated that to make mom comfortable, we should operate, and to do that, I needed to lift the DNR order.

I called the aging life care manager back in and a geriatric doctor to help me navigate my choices for mom. The geriatric doctor told me that mom most likely wouldn’t be strong enough to qualify for surgery. A few tests had to be run before we even needed to worry about the surgeon’s request.

The first test identified a heart and lung issue, eliminating the option for surgery. Mom’s body just wasn’t strong enough, and it was easy to see how much pain she was in.

She was alert even after four courses of morphine. She didn’t really understand what was going on. And at some point during her stay at the ER, she had a small stroke. My mom no longer recognized me, and she was unable to remember that she had children.

It had become clear that our only choice was to move mom into hospice care. Her health was fading fast, and we wanted to make her last days as comfortable as possible. We moved mom back to her community where she had 24-hour support and hospice care. I called all of my siblings and they scheduled one last trip to see mom.

Over the next week, mom mostly slept. Every day, I’d arrive with lotion and rub her feet. By the end of each visit, I would end up crying at the foot of her bed. I told her how much I would miss her, but reminded her that dad was patiently waiting for her to join him.

When I visited her on Christmas Day, her breathing was jagged. I knew she didn’t have much longer. The memory community nurse called at 5:35 p.m. to report that mom had passed away. Even though I felt it coming, I was still stunned. Thankfully, my husband and children were with me when I received the news. They were able to take me to see mom one last time and say my goodbye.

Learning to live with my decisions

If I knew how things were going to progress, I feel like I would have made many different decisions throughout my caregiving journey. It’s hard not to second-guess the decisions that I made during my time as caregiver.

A wonderful social worker told me that I should forgive myself, because I made the best decisions that I could with the information I had at the time. I’m still reminding myself of that. I often share this advice with other caregivers who feel the same remorse about their caregiving journey.

A year has passed, and I’m still learning how to adjust to life after caregiving. I was told quite often to be kind to myself during my journey. Now that my family caregiving journey is over, I believe that this is the best advice I was ever given. I hope that after reading about my experiences, you can take this to heart and find peace on your journey.

Life after caregiving

While I was caring for my parents, I started to build a part-time business focused on helping other caregivers. I wanted to help other caregivers navigate challenges like the ones I was facing — managing doctor’s appointments, getting finances in order, and maintaining a second home.

This part-time business would become MemoryBanc. For several years, I balanced work by limiting the number of clients I helped so that my parents would always be the priority. When I was grieving my mom’s passing, I realized how much I enjoyed being able to help her lead the life she wanted.

After a few months, I started to take on more clients. It felt good to be able to put my caregiving journey behind me, but also to use what I learned to make me a valuable resource for so many other families. While I still have moments of sadness, I’ve been able to focus on the great lives my parents lived instead of dwelling on the last few years we had together. I’m still adjusting to my new normal.

Complete Article HERE!


Most Families Wait Too Long to Utilize Hospice Care


Researchers say elderly people are in hospice care for an average of only 12 days. Why aren’t they admitted sooner?

by Gigen Mammoser

Hospice centers provide valuable end-of-life care for the elderly.

So, why aren’t more people using these centers?

The Medicare hospice benefit (MHB) was established in 1982 in order to give recipients access to high-quality care near the end of their lives.

But, new research in the Journal of the American Geriatrics Society states that those who utilize the service often do so too late.

The study included 562 individuals, all aged 70 and older with an average age of nearly 87 years.

Of these older adults, only 43 percent of them were admitted to hospice during their last year of life.

While hospice is available to individuals with six months or less to live, researchers found that for half of the study participants their duration of hospice care was less than 13 days.

The authors say underutilization of hospice care can create a burden for healthcare workers, and result in patient suffering.

Why don’t people utilize hospice?

The reason why hospice care isn’t used more frequently is complex.

According to statistics from 2000, only 23 percent of Medicare beneficiaries who died were in hospice care at the time.

The MHB was initially offered for those with end-stage cancer. However, more and people have begun seeking hospice care for noncancer-related ailments.

The problem is that other issues, such as frailty and dementia, may be harder to discern when determining an individual’s eligibility for hospice care.

“It is well documented that the prognostication [predictability] for those patients with a noncancer diagnosis is more difficult and is a complicating factor for physicians and others who refer patients to hospice care,” said John Mastrojohn, executive vice president and chief operating officer of the National Hospice and Palliative Care Organization (NHPCO).

Lead study author, Dr. Thomas Gill, a professor of medicine at Yale University, agreed.

“Cancer tends to have the most predictable course,” he told Healthline, “meaning it is generally easier to predict when someone with cancer is in the last six months of life than someone with another terminal condition.”

“The challenge is even greater for older persons since many die from a combination of different conditions and/or debility, none of which may meet criteria for hospice,” Gill added.

That gets even more problematic when you look further at the results of Gill’s research:

The most common conditions leading to death were frailty and organ failure, not cancer. However, hospice acceptance rates for frailty were the lowest, and for cancer the highest.

Waiting too long

Not only is care jeopardized by condition, but by duration of stay as well.

The median of 12.5 days spent in hospice indicates that even when individuals do utilize the MHB, it is at the last possible moment.

“A large proportion were admitted shortly before they died, which makes it difficult for hospice to optimize its benefits,” said Gill.

Hospice care offers a unique opportunity to individuals who are near death in that it is not intended to cure them.

It is strictly palliative, meaning it is meant to provide comfort and quality of life.

Benefits of hospice care, Mastrojohn told Healthline, include expert pain management, spiritual support, as well as social and physical activities, tailored to the individual.

Hospice also provides service to families through bereavement support to help them deal with the loss of a loved one.

“Hospice is a benefit delivered by clinicians who are expert in the care of those with serious, advanced illness,” said Mastrojohn. “It is my hope individuals would be more open to receiving hospice services so they can maximize the many benefits they need and deserve.”

Changing how hospice is viewed

While this new research helps to highlight the underutilization of hospice care, it does not provide crystal clear answers why.

However, the authors hope that their work will lead to better strategies for addressing those who need hospice care, and getting them enrolled sooner in a program, rather than waiting until the last moment.

But hospice care also represents a difficult dilemma for families, which may help explain why duration of stay is so low.

For some, putting a loved one in hospice care can sometimes be seen as a sign of defeat.

“Some patients and/or families might interpret hospice as ‘giving up,’ but this is clearly not the case,” said Gill.

Complete Article HERE!


As family members dominate caregiving, outside support is hard to find


By Steven Ross Johnson

Nearly 9 out of 10 caregivers for older Americans are unpaid, and those individuals work longer hours and receive less government support than their paid counterparts, according to a new study.

Approximately 900,000 Medicare beneficiaries received support from 2.3 million caregivers in 2011, according to the study published Wednesday in Health Affairs. The study looked at data from Medicare beneficiaries who lived in community settings and died within one year of study enrollment.

That’s just the tip of the iceberg. In 2015, roughly 34 million Americans provided unpaid care to an adults age 50 or older in the last 12 months, according to figures from the National Alliance for Caregiving and AARP.

Unpaid end-of-life caregivers provide nearly double the hours of support per week compared to other caregivers, but they did not receive additional pay from government or private insurance, according to the Health Affairs study.

The study illustrated the heavy economic burden family caregivers can face when they provide end-of-life support and how the healthcare system relies on family members to take on that care, according to Katherine Ornstein, assistant professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City and lead author of the study.

“We need to do more to make sure that our infrastructure is supporting (family caregiving) so that it can be done well and that the consequences for family members are not negative,” Ornstein said.

Medicare spending in 2011 on patients during their last six months of life accounted for 28% of the total $554 billion the program spent on healthcare that year, according to the Kaiser Family Foundation.

The value of unpaid care provided by friends or family members was valued at roughly $470 billion in 2013, according to the National Alliance for Caregiving and AARP.

Government and healthcare stakeholders can provide family caregivers with information and resources to help set and reschedule physician appointments, work with insurers or make care decisions to ease their burdens, Ornstein said.

Those resources could go a long way with spouse caregivers in particular. More than 42% of Medicare beneficiaries in the study received help from their spouses, according to Ornstein’s analysis. But nearly two-thirds of spouse caregivers reported that they received no support from family or friends.

Still, approximately half of Medicare beneficiaries received support from their daughters and one-third received help from their sons.

By comparison, 14% of study participants received caregiving support that wasn’t for end-of-life care from paid helpers and 20% secured paid help for end-of-life care, the study found.

Family dependence for end-of-life or aging care is only expected to rise as the elderly population will nearly double from 2012 to 2050, increasing to more than 83 million, according to the U.S. Census Bureau.

But family members and loved ones may not be able to meet those increasing care demands. A 2013 report by the AARP Public Policy Institute found that there were an average of about seven potential caregivers for every patient age 80 and older in 2010, but that ratio was expected to decrease to 4 to 1 by 2030 and to 3 to 1 by 2050.

Complete Article HERE!