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.

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.

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 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.

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.

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.