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Getting Your Affairs in Order: Why is it Important?

Today we see and hear a lot about decluttering and organizing our homes. Most of us think about tackling closets and drawers. Still there is one area we need to think about as well, our essential family documents including all legal, medical, financial, and personal.

It is easy to put off the monumental task of organizing the papers you need to keep. If you are like many families, you may find a safe place to dump them until you can do a thorough job. The problem with this solution is it’s not a very good solution. Your spouse or children may not know where to begin looking in an emergency. A disorganized box or drawer of folders or individual papers takes time to sort, and time may be limited. The following information from two sources gives you advice on what to keep and how to find them when needed. This checklist looks daunting, but if followed, it provides you and your family with the information required in the event of your illness or death.

Most Important Documents

The following list, while not exhaustive, is an excellent place to start gathering originals of the documents you need to keep forever:

  • Adoption Papers
  • Birth Certificate
  • Citizenship Papers
  • Death Certificate
  • Divorce Decree
  • Estate Planning Documents (Wills and Trusts, Health Care Directive, Power of Attorney,
  • Physician Orders for Life-Sustaining Treatment (POLST), Do Not Resuscitate (DNR)
  • Marriage License
  • Military Discharge Papers
  • Passport
  • Records of Paid Mortgages
  • Social Security Card

After you go through all the trouble of sorting your papers, you’re ready to tackle conundrum number two: “where to store them.”

Additional Info To Have On Hand
  • Name (First and Last)
  • Current Address
  • Home phone, Work phone, and Cell phone
  • All email addresses
  • Office Address and Office Contact Name/Phone#
  • Birthdate and Birthplace
  • Anniversary
  • Social Security Number, Driver’s License/State Issued ID Number, and State of Issuance
  • Street City, State, Zip, and Dates Lived There
  • Who employed?
  • Company Name, Company Address, and Supervisor Phone Number
  • Position Held, Dates Employed, Starting Pay, Ending Pay, and Reason For Leaving
  • Payroll Name, Branch, SSAN, DOB, and Place of Birth
  • Date Entered, Date Released, Officer/Enlisted, and Final Rank
  • Medical Issues
  • Child’s name before and after adoption
  • Birth mother name and DOB and Birth father name and DOB
  • Birth institution name and address
  • Location of Original Birth certificate
  • Completed reunion registry
  • Adoption agency name and contact info
  • Birth Certificate | Name | Location
  • Marriage License | Names | Location
  • Divorce Decree | Names | Location
  • Other Document | Name | Type | Location
  • Attorney | Name | Phone | Attorney Address | Specialty
  • Accountant | Name | Phone | Accountant | Address | Specialty
  • Name on Passport, Passport number, Issuing Country, Expiration Date, and Storage Location
  • Loyalty Program ID, Number Level, and Website
  • Global Entry ID /Who Number
  • Type, Location, Combination, and Key location (What is stored in?)
  • Date Closed
  • Other Keys – “What locks?” and “Where kept?”
  • Tax Year, Location of forms, Name of CPA, and Contact information
  • Federal tax owed, State tax owed, and City tax owed
  • Federal tax paid/ref, State tax paid/ref, and City tax paid/ref
  • Tax Year, Location of forms, Name of CPA, and Contact information
  • Address(es), Taxable Value, Tax Owed, and Is Homestead Exempt?
  • Type, Description, ID/Login (if needed), Password, Location, and How to restore? 
  • Website/Company, Login ID, and Password/PIN

Bank Accounts

  • Type, Institution, Account number, Owners of account, and Institution Contact Info
  • Statements Sent To (Physical Address or Email Address)
  • Automated Payments From, Location of checks, and Used Checkbooks
  • ATM/Debit Cards For Account and ATM PIN

Investments (including Mutual Funds, Annuities, and Stock)

  • Type, Name, Account Number, and Contact Info, Location of Information, Value, and Date

Retirement Plans (401K, Pensions, IRAs, etc.)

  • Type, Name, Account Number, Contact Information, Location of Information, Value, and Date

Debts and Obligations Owed to You

  • Type, Debtor, Debtor Contact Info, and Originating Date
  • Final Payment Date, Original Debt Amount, and Current Balance
  • Date Paid Off and Notes

Other Assets (Savings bonds, stock options, etc.)

  • Type, Name, Account Number, Contact Info, Location, Value, and Date

Loan Obligations

  • Type, Loaning Institution, Contact Info, Amount Paid Off, and Date
  • Account #, Originating Date, Final Payment Date, Loan Amount, Loan Balance, and Date

Credit Cards

  • Type (Visa, MC, etc.), Brand/Issuing Bank, Name On Card, Card Number, Expiration Date, Security Code, and Customer service phone
  • Card Website, Website ID, and Website password
  • Outside U.S. Customer Service Phone Number, Interest Rate, Balance, Credit Limit, and Date or Date closed

Other Debts

  • Type, Debt holder, and Holder Contact Info
  • Originating Date, Final Payment Date, Original Debt Amount, Current Balance, and Date Paid Off

Life Insurance Policies (includes Accident & Disability and Long Term Care)

  • Name, Policyholder, Policy number, Policy Amount, Policyholder Contact Info
  • Beneficiaries, Due Date, and How Is It Paid?

Health Insurance Policies (included Dental and Prescription Drugs)

  • Name Covered, Insurer, Policy Number, and Policy contact information
  • Network, Co-Pay Amount, Website, Cost/Month, Due Date, and How Is It Paid?

Car Insurance

  • Insurer, Drivers Covered, Car Make/Model, and Policy number
  • Contact Information, Coverage, Deductibles, Deductions, Due Date, and How Is It Paid?

Other Vehicle Insurance

  • Insurer, Drivers Covered, Car Make/Model, and Policy number
  • Contact Information, Coverage, Deductibles, Deductions, Due Date, and How Is It Paid?

Homeowners/Renters Insurance

  • Insurer, Location Insured, Policy Number, Contact Information
  • Deductible, Due Date, and How Is It Paid?
  • Items Explicitly Covered and Policy Notes
  • Type, Name of Company, Position, SSN/FEIN
  • Partner name and Partner Contact
  • Info Location of Business/Tax Forms and Location of Inventory
  • Name of Bank, Bank Account #, Credit Card Number(s), and PIN
  • Bank Website, Login I.D., and Password
  • Domain Name, Account ID, and Password
  • Web Host, Account ID, and Password
  • Email address(es) and Password(s)
  • Other Websites, Login I.D., and Password
  • Location, Type, Date of Purchase, and Estimated Value
  • Mortgage Holder, Mortgage Account Number, and Lender Contact Info
  • Property Taxes and Location of Paperwork
  • Type, Year, Make/Model, Color, VIN #, License Plate #, and State of Registration, and Location of Spare Key
  • Insurer and Policy Number
  • Odometer/hours, Notes, and Date
  • Subscription Type, Account Number, Company, Expiration Date, and Website

Long Term Health Care Directions (Self and Immediate Family)

  • Name, Situation, and Care desired

Organs, Tissue, and Body Donation Directions (Self and Immediate Family)

  • Name, Body part(s), and Donate/Do Not Donate

Guardianship of Children

  • Child Name, Guardian Name, Guardian Phone, Guardian Address, and Notes
  • Name, Date Updated, Time On Life Support?, and Do Not Resuscitate?
  • Institution To Handle Arrangements, Casket/Container Type, and Open/Closed?
  • Embalmed?, Burial/Cremation?, Where Interred?, and Who performs the ceremony?
  • Pallbearers?, Grave/Memorial Marker Details, and Ceremony speakers
  • Special Music, Notes, Food/Drink?, and Where Flowers/Donations Should Be Sent?
  • Location of Will and Other Notes About Final Arrangements
  • Company Benefits Department, Company H.R., and Phone Number(s)
  • Employee Number and Notes
  • Insurance Company, Company Contact number, Policy number, Agent Name, and Notes
Agencies To Contact
  • Social Security AdministrationContact Number: 800-772-1213
  • Veterans AdministrationContact Number: 800-827-1000
  • Pension Plan Company
  • Credit Bureaus (verify addresses) (send copies of death certificates)
    • Equifax – P.O. Box 105139 Atlanta, GA 30348
    • Experian – P.O. Box 4500 Allen, TX 75013
    • TransUnion – P.O. Box 2000 Chester, PA 190

Source: Modified from Dave Ramsey, Financial Advisor, www.ramseysolutions.com

Source: Modified from “The Big Book of Everything” by Erik Dewey www.erikdewey.com/bigbookmkllla.pdf

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Lynn Ross, LMSW

DSF Director of Resources

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Gary's Corner Resourceful Articles

Traveling with a Cognitive Impairment

I am repeatedly asked for advice on whether or not to take loved ones with dementia on vacation. My answer has stayed consistent, “It’s always better if they are still in the early to moderate stage of their disease. If they are “too far” advanced, the problems you may encounter could be severe. Once they enter the latter stages, the safe haven of their homes may honestly be the best place for them. At this point, you may want to consider what is known as a “Staycation.”

What I hear most from family caregivers is, “This will most likely be our last trip together.” Being a Florida resident, care providers are constantly telling me, they’re planning a 5-7-day cruise.

Those that have opted not to heed my advice have almost certainly come home telling me that everything that could have possibly gone wrong did!

Let me describe what happened to a certain gentleman. He went against the advice of several dementia-caring professionals and decided to take his wife across a multi-state road trip to visit his son. Not even making it out of the state of Florida, he started running into difficulties. They began with making frequent stops so his wife could use the restroom and attempting to bring down his wife’s anxiety levels which seemed to be intensifying by the mile. He pulled into a well-lit truck stop, reckoning it would be safe since it was well-populated.

After waiting for about 15 minutes for his wife to come out of the restroom, he decided he’d better knock on the door and check on her. She finally opened the door, and he gently reached out for her hand to lead her back to their car. At this point, his wife started screaming at the top of her lungs. The next thing this man knew, he was surrounded by people, thrown to the ground, and held there until security arrived.

Meanwhile, she was telling everyone that she had no idea who he was and that he had kidnaped her. The police arrived and handcuffed this man—charged him with a felony. This left absolutely no one that understood how to care for this poor woman properly.

Embarrassed, broken, and defeated, he finally convinced the police to call his son, who was a day and a half away, to come to get his mother. The devastation and turmoil this family went through took many years to heal.

I know that there will be times when you have absolutely no choice, and you all have to go somewhere. Funerals or other drastic events may come into play. However, think deeply and hard before you start stripping a loved one away from his or her daily routine so desperately needed in the late stages of dementia.

I personally experienced a similar but less disastrous situation during a 12-day trip to Canada with my dad, who had lived with Alzheimer’s disease. There wasn’t a bathroom throughout the whole trip that my father could find his way out of on his own. It wasn’t until that trip that I genuinely realized how advanced in the disease of Alzheimer’s my father really was. I had been kidding myself, living in denial, believing he truly wasn’t all that bad. It was an eye-opening experience.

Again, If you want to do some traveling, my advice is to go early while both of you can still enjoy it. Because once the disease starts winning, and it will, loving them in the comfort and security of their own homes may actually be the best vacation possible.

If you do travel, and you’re traveling by plane, when making your reservations, I would list your loved one as a passenger with disabilities. If you are prompted to ask what type, tell them there is a cognitive disorder. I have personally talked with many of my friends living with dementia—they have told me that the airlines have helped them immensely. With the extra-long lines today due to security checks, take whatever assistance is available to you and your loved one.

If you’re traveling across many different time zones, you may want to consider keeping medication times the same as his or her home routine. You can set different alarms on your cell phone to assist you. This will help everyone get settled back in when you return home, for this could bring on another whole set of difficulties to consider.

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Gary Joseph LeBlanc, CDCS

DSF Education Director & Author

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End-of-Life Decisions: What’s Important to Me?

Your spouse (mother, father, sister, brother, or adult child) is in an accident. You receive a phone call from the ER; they explain the situation and state that surgery is needed to save their life. They ask if you are the agent on their Georgia (or any other State) Advance Directive and can provide permission for surgery and life support, if necessary. “No” is the answer to their question. You remember hearing that every adult should have this legal document. You were going to talk to them, but it never seemed the right time.

What happens now? Is it too late? Yes, it may be. From now on, the healthcare system is in charge, and no one who knows and loves them can do much. Most people want to control or have autonomy over these life-changing decisions, but that may be impossible.

Without the legal paperwork, you are at the mercy of others. This is one of the critical reasons for completing these forms and should be done, especially as we age. When diagnosed with a chronic illness, such as dementia, is another case for taking steps to have healthcare documents and some other legal documents completed and with your agent(s). In this instance, waiting is foolish and a prescription for adding to your family’s challenges. As cognitive decline increases, the ability to understand and make reasonable decisions decreases. The ability to express your values and personal beliefs also decline. You may not be able to have any input into what happens. Completing the necessary legal documents is the way to avoid the above scenario.

You should see an Elder Law Attorney to have these documents drawn. When they hear the word “attorney,” many people automatically think of the expense without considering the costs of being able to control any decisions at a critical time. These costs may not be monetary, but there are costs to your families in other ways. If no one knows your wishes, how can they ensure they are respected? Even if you and your family have discussed your end-of-life wants and expectations, the healthcare system is in control if a legal document appointing an agent is unavailable. Many families have learned this the hard way compounding the stress they feel at this time when they are losing a loved one. You can control this outcome by understanding and completing these documents before you need them.

Receiving a dementia diagnosis heightens the urgency to take this step. If you wait, there will come a time when cognitive decline will not allow you to make rational decisions. An attorney can not accept your signature unless they know you understand the decision and the consequences. Many families have spent more on legal fees and other problems to correct the issues caused by not having engaged an attorney early.

Healthcare decisions are not the only ones impacted by the correct documents. Everyone needs a Financial Power of Attorney as well. This also allows an agent you appoint to handle any financial affairs you may have. They can pay bills, manage investments, sell property, and make necessary financial decisions for your benefit. So many families have no idea what a difference having this legal document can make in helping a spouse, parent, or loved one when they need it.

If you or a family member have not taken steps to plan for this critical aspect of aging, please consider discussing your wishes and getting in touch with an Elder Law Attorney. With the aging baby boomers, this is a growing section of the legal profession. To find an attorney in your area, go to the National Academy of Elder Law Attorneys (NAELA) website, www.naela.org, and read the qualifications they are required to have. Each attorney has a brief statement explaining their areas of specialty. Invest a little now to save so much more later. Money is not the only consideration. You will have peace of mind knowing you will receive only the treatment you feel suits you and also knowing you are continuing to care for your family. This is one of the best gifts you can give, and they will appreciate it more than you know.

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Lynn Ross, LMSW

DSF Director of Resources

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Hey, Care Partner! Are You Taking Care of You?

The term “self-care” has become a buzzword that, to some, can be viewed as a nice word for “selfishness.” As it relates to care partners, nothing could be further from the truth. Self-care is vital to the success of anyone meeting the physical and emotional demands of caring for a loved one living with dementia. A better term may be “self-compassion.” This expresses the importance of pursuing activities that nourish your well-being and being kind to yourself as you provide the best care possible for your family member. Here are a few suggestions you may want to consider.

Start by giving yourself credit for the challenging, complex work of caregiving. No one is perfect, so accept that fact and do your best to provide a safe, nurturing environment. You will face tasks, demands, and challenges you were not trained for every day. As well as the emotional toll your relationship with your loved one will take on you. No one is prepared for either role. Acknowledge this and find ways to be kind to yourself.

Many care partners neglect this critical aspect and continue to listen to their inner voice telling them how badly they are handling the current situation. They believe this harsh criticism and try harder to be the perfect care partner—an impossible task for anyone. Studies have found that many family care partners become ill and can no longer provide care. Many go on to die before the care recipient. This is one of the reasons self-care is so important. You don’t need to lose yourself completely, but find ways, even small ways, to care for yourself.

Street signs with text SELF CARE. Concept of mental spiritual health. Take care of yourself

Self-care takes as many forms as there are care partners. It is personal and should be what gives you pleasure and renews your energy. No matter how simple it may seem, if you enjoy it, then it’s right for you. If you’re unsure how to begin, ask yourself, “If I had only one day without work, family activities, or obligations, what would I do with my time?” Your answer may provide the secret to what you enjoy doing. With that answer, start thinking about ways to work these activities into your day. Be sure to cover all the aspects of self-care, which are emotional, practical, physical, mental, social, and spiritual. Many times you will cover several with one activity.

We hope you will think about the information and make an effort to consider what pleases you and recharges your batteries. Below are several websites that offer practical advice. If you are interested, I included a site with a Self-Assessment. You may want to complete it to understand how you address these areas of your life. This information is for you, but if you want to discuss the results, please email me: lynn@dementiaspotlightfoundation.org.

Additional Resources

Picture of Lynn Ross, LMSW

Lynn Ross, LMSW

DSF Director of Resources

Categories
Gary's Corner Resourceful Articles

Financial Burdens of Dementia

The monetary expenditure involved in caring for a loved one with dementia can be at least three or four times higher than the amount used in caring for an average senior adult.

Recently, I received a correspondence from a woman who has been her mother’s primary caregiver for the past five years. In her letter, she explained that she must pay an outside caregiver $15 per hour. This was so that she could continue working to maintain her $18-per-hour job. She said, “A little bit’s better than nothing, and it gives me a chance to get some respite.”

Sadly, this dear caregiver only gets respite while she is at work. This is a problem we all need to work on.

Most caregivers have to give up their employment completely, bringing on the additional stress of facing financial ruin. I understand her dilemma only too well. When I was my dad’s primary caregiver, at first, I had to cut my working hours in half. Ultimately, I found it necessary to shrink those hours to about 12-15 a week if I was lucky. Any hours I could work were due to help from my beloved sister.

Regarding pharmaceutical costs. My dad had the Medicare D-Plan, which reached its limit so fast that we fell quickly into a financial crater.

Beware because additional costs may include:

  • Hiring a home care agency
  • Transforming the home into a safe haven
  • Acquiring medical equipment
  • Admittance into memory care or a nursing home
  • Incontinence products

The list goes on and on. Trust me; these costs can easily bankrupt any family.

Click the button below to download our check-off list to help start getting the financial, legal, and health information together when a loved one is diagnosed. Please go through the list and talk to an Elder Law Attorney. Procrastination does not mix well with dementia.

Please note that the effects of this disease changes with time. You will need to revisit all plans frequently. All the above needs to be put into action as early as possible; immediately following their diagnosis is ideal. Please feel free to share this list with anyone else in need.

Picture of Gary Joseph LeBlanc, CDCS

Gary Joseph LeBlanc, CDCS

DSF Education Director & Author

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Gary's Corner Resourceful Articles

In Search of the Path to the Past

When my father was first diagnosed with Alzheimer’s disease some 25 years ago, a doctor sat us down and explained to us the difference between long-term and short-term memory loss. This is how he put it, “You need to think of your brain as a road map. All the childhood memories you have, you’ve visited thousands and thousands of times. You have built highways and freeways to those memories. But what happened two minutes ago, you don’t even have a path through the woods built for those memories, and the brush and branches spring right back, devouring the newly made path so you can’t find the same way back.”

Think of these paths and trails as the highway system of your brain. With childhood memories, you’re cruising down a two-lane highway. But when you’re trying to think of someone you just met or what just happened two minutes ago, the road you’re stumbling upon hasn’t even been surveyed and cleared yet.

Now, this had my father speaking directly to his physician, saying, “so what you’re telling me is I will be lost in the woods forever?”

“No, you’ll have many moments of clarity during the early part of the disease. But as you progress into the middle stage, these moments will find you less and less.”

I must tell you that when my dad would realize all of a sudden he was not where he thought he was or you were not who he thought you were, the devastation that would spread across his face was heartbreaking. It was one of the saddest parts of watching him deteriorate.

The best thing I found to do was to change the subject gently. Learn how to redirect. I would attempt to move his mind onto something else by quickly changing the conversation. One of the best techniques for caregivers to use is redirection through taste. The power of a bowl of ice cream might absolutely amaze you.

Marvelously, his penetrating sadness would usually vaporize as fast as it found him.

Go with the flow. Pay attention to what your beloved patients seem to prefer. It’s vital for them to have a smooth start every morning, which could determine their level of confusion for the rest of the day or days to come. Once again, the “simple routine mindset” can start with the simplicity of a closet and wardrobe.

Picture of Gary Joseph LeBlanc, CDCS

Gary Joseph LeBlanc, CDCS

DSF Education Director & Author

Categories
Gary's Corner Resourceful Articles

Dressing Dementia

I have always said that keeping your loved one in a simple routine is number one in caring for people living with dementia. (The reason for this is because of short-term memory loss.) This applies to a wardrobe as well. Please keep it simple, as in loose fitting and easy to put on and take off, especially in the latter stage of the disease. Also, be sure to limit clothing choices. Otherwise, he or she may become overwhelmed and easily confused. There will be times when you may wonder why your loved one wants to wear the same shirt every day; well, there might not be a “yesterday” belonging to his or her memory at that moment.

Simplicity. Let’s start from the bottom-up. I had my dad wearing Velcro-strap shoes. There was no reason to have him struggling to remember how to tie his shoes first thing in the morning, starting his day in a frustrating state. The one thing I couldn’t get him to wear the last two years of his life were socks. I believe the cause of this was that he didn’t want to wear anything, anywhere, even close to being tight! (Good thing we were in Florida!) Because of all this, I replaced his shoes reasonably often so we could all breathe fresher surrounding air; I accomplished this task by exchanging identical shoes during the middle of the night. He never knew the difference.

Dad also liked to lay his pants across the foot of his bed at night. I’d switch them out, too, while he slept, replacing both the belt and wallet and making sure everything else went back into the right pockets.

Shirts—loose-fitting and comfortable first. You might want to try more oversized buttons or pullovers, making these garments less complicated. Dad had a favorite, loose flannel jacket he wore throughout all four seasons. It always amazed me how he could wear that jacket throughout the heat of our Floridian summers. It had been washed so often that it had developed a velour softness and became almost a security blanket for him. For a man who wore suite coats and ties all his life, he was a surprising sight—settled into such laid-back, lumberjack attire.

Go with the flow. Pay attention to what your beloved patients seem to prefer. It’s vital for them to have a smooth start every morning, which could determine their level of confusion for the rest of the day or days to come. Once again, the “simple routine mindset” can start with the simplicity of a closet and wardrobe.

Picture of Gary Joseph LeBlanc, CDCS

Gary Joseph LeBlanc, CDCS

DSF Education Director & Author

Categories
Gary's Corner Resourceful Articles

Frontotemporal Degeneration (FTD)

Frontotemporal Dementia (FTD) is often misdiagnosed as a psychiatric disorder or Alzheimer’s disease. Signs and symptoms vary depending on what section of the brain is being affected.

FTD is a disease that causes progressive damage to the temporal and/or frontal lobes of the brain. The disorder also may be referred to as frontotemporal lobar degeneration (FTLD) or Picks disease.

Most patients with this disease will endure dramatic changes in their personality, becoming impulsive or emotionally indifferent. Sometimes, they eventually lose the ability to use and understand language.

The lack of language skills is a highly devastating symptom, often coinciding with social withdrawal. Naturally, this leaves the person hiding in a shell of solitude. Many may develop what is known as Primary Progressive Aphasia (PPA). This symptom usually starts developing around the second year of the disease. With this type of dementia, you may not see the characteristic of memory loss as you would with Alzheimer’s disease. Instead, you may first notice a person’s inability to concentrate and extreme changes in such a person’s behavior. This often misleads many physicians into believing their patients are experiencing psychiatric problems.

Here are a few signs of FTD to be on the watch for:

  • Loss of empathy
  • Lack of judgment
  • Apathy
  • Obsessive-compulsive behavior
  • Decline in personal hygiene
  • Change in eating habits
  • Speech and language problems

This disease onset typically strikes people between the ages of 50s and 60s. But according to the Association for Frontotemporal Degeneration (AFTD), it has been seen as early as 21 and as late as 80 years. Roughly 60% of the cases are between 45-64 years of age.

Problems may also occur with motor skills, similar to those of Parkinson’s disease or Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig’s disease. This disease attacks the frontal or temporal lobes (possibly both) of the brain, creating those sections to wither or shrink.

Recently, I had a phone conversation with a woman whose husband, at the age of 62, has been diagnosed with FTD. She said that his doctor initially diagnosed him with depression. Soon after, he was dismissed from his job for many years due to a lack of concentration. The disease has now progressed to what the doctors have told her is in the latter stages.

As hallucinations have now set in for him, I genuinely feel for her. One thing that amazed me is that her husband tells her that he thinks that something is wrong behind his forehead. Because of his loss of language skills, he now only speaks to her or to close family members. This appears unsociable to other people, but it is what it is: a disease.

There are so many different types of dementia in existence. The thing they all have in common, however, is that they’re all extremely difficult to diagnose. The earlier the patient does get appropriately diagnosed, the better they can genuinely be cared for.

For more information on this FTD, please visit the Association for Frontotemporal Degeneration’s website: www.theaftd.org

Picture of Gary Joseph LeBlanc, CDCS

Gary Joseph LeBlanc, CDCS

DSF Education Director & Author

Categories
Gary's Corner Resourceful Articles

Hurricane Season With Dementia

Hurricane Season With Dementia

Proper training on how to handle individuals with dementia during a disaster is crucial. I have been grateful for the opportunity to educate and train employees of the Florida Health Department on providing care and increasing awareness for those with dementia.

As a caregiver for loved ones with dementia during a natural disaster, you may face two daunting challenges: the impending storm outside and the resulting chaos in your loved one’s mind. If this scenario occurs, you won’t have time to think, so planning ahead is crucial.

If you find yourself in a situation like this, you cannot depend on others for assistance. Everyone will be busy preparing for the impending hurricane, thunderstorm, or any natural disaster, and they may be unable to help. Your loved ones will probably be scared and uncooperative during these events. The constant news coverage of high winds and potential storm surges will only increase their anxiety levels, not to mention the caregiver’s stress they see you going through. If an evacuation is necessary, it can be incredibly challenging for those with cognitive impairments. Any disruption in their daily routine, let alone being moved to a completely new environment, can cause significant distress.

Always use redirection to keep them calm. Check out our Preparing for a Special Needs Shelter Checklist (https://bit.ly/3Kz8ue3) for some items I highly recommend packing as you plan to evacuate. (Please keep in mind you will be limited in how much stuff you can bring. Make it count.)

Don’t forget the about pets. My father adored our cat and often seemed to prioritize its well-being over his own. Make sure your loved one knows their pet will be well taken care of.

Maintain a calm and reassuring demeanor. Have tranquil conversations with them as much as possible, reminding them that you are there to help with whatever they may need. Be patient, as you may have to repeat yourself multiple times during this challenging time. It’s crucial not to get overwhelmed; the more composed you appear, the less anxious they will feel.

It’s essential to plan ahead, especially regarding emergency evacuations. Your local Chamber of Commerce and County Health Department are great resources for information on special needs shelters. Researching and pre-registering at a shelter that best meets your needs is important. Keep in mind that individuals with dementia may struggle in loud, crowded spaces, making music therapy an ideal solution with the use of headphones. If possible, seeking refuge at a friend or relative’s home may provide a calmer environment.

Even individuals who are stable and waiting out the storm in a public shelter will likely be anxious about the potential destruction of their homes. The tension in these places can be overwhelming for those affected by dementia.

Unfortunately, it’s also essential to have a backup plan in case you cannot return home due to severe damage or a power loss.

Today is the perfect day to create your emergency preparedness and evacuation plan. Don’t wait until it’s too late!

Picture of Gary Joseph LeBlanc, CDCS

Gary Joseph LeBlanc, CDCS

DSF Education Director & Author

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Resourceful Articles

That Little White Lie

If you are caring for the memory-impaired, one of the most important lessons you need to learn is never to argue with them. First and foremost, you will never win the argument! Secondly, you’re only going to end up tormenting the both of you. Just go with the flow. Sadly, even when our loved ones are blabbering, making absolutely no sense at all, we are better off just agreeing with them.

For example: should you wake up one day and suddenly find that you are now called “Bob,” then just become Bob! Telling them they’re mistaken will only send them sinking deeper into their confusion, creating a heavy bout of anxiety. As a caregiver, this is precisely what you are trying to avoid.

While caring for my father, who was living with Alzheimer’s disease, I experienced many evenings when he would say to me, “It’s starting to get dark outside. If I don’t get home soon, my mother is going to start worrying about me.” Instead of telling him that he was a man in his eighties and that his mother had passed away some twenty years ago, I would calmly tell him, “I just talked to your mother on the telephone a little while ago. She knows you’re spending the night here with me. Everything is going to be okay.” Nine out of ten times, by reassuring him he’s okay, the following day, he wouldn’t even remember having been worried in the first place.

Many describe this as telling little white lies, fiblets, or therapeutic lies. Call them what you want, but please use caution.

Nobody likes to be lied to. People are still . . . people. So, before throwing out these false statements, you need to ask yourself a sincere question. “Is the lie in your benefit or theirs?” Because they need to be in theirs. Make sure that it is being used for their own safety and well-being. Please don’t fall into the habit of using these fibs for your own convenience, or it may come back to haunt you.

Keeping a loved one’s anxiety under control is vital for such a person who has Alzheimer’s or any other kind of dementia-related disease. So, if you must bend the truth a little by telling a therapeutic fib, so be it. If it helps them take their medication, stops them from wandering, keeping them safe and calm, these are an example of a situation where your little white lie may be appropriate. Use them cautiously and consider it to be an act of love.

 

Picture of Gary Joseph LeBlanc, CDCS

Gary Joseph LeBlanc, CDCS

DSF Education Director & Author