Alzheimer’s Holiday & Travel Tips

If they’re anything, holidays are characterized by a departure from routine. For cognitively healthy individuals, this is often a welcome departure, providing much needed respite from the tedium or repetition of the daily grind. But the thing that makes holidays so enjoyable for many people is the very thing that can agitate and confuse a person with dementia. The predictability of a daily routine often provides comfort and stability to cognitively impaired persons. When the routine is interrupted or suspended the result can be quite upsetting for the Alzheimer’s sufferer. This may prompt, well… let’s just call it “challenging” behavior.  In turn, this becomes a source of frustration for the caregiver.

Additionally, the so-called “holiday blues” can especially affect those who are directly experiencing the loss of their mental faculties. This can make an Alzheimer’s-afflicted person more difficult to work with. In turn, caretakers and family members can experience additional stress.

But, as tempting as it may be at first blush, “skipping” the holidays or wishing them away is neither practical nor healthy. There are some strategies that you can implement to make things a little more manageable. Here are some things to think about.

The Stage Makes a Lot of Difference

Recall that Alzheimer’s Disease progresses in stages. (For a brief overview, see HERE.) One of the simplest ways, but by no means the only way, to think of these stages is in terms of the condition being “early,” “middle,” or “late/advanced.”

On this threefold picture, people in the earliest stage of the disease go through only subtle – and sometimes hardly perceptible – changes. Intuitively, as the condition continues, the afflicted person will exhibit more pronounced changes. Of course, by late stage, the transformation will be radical – on many levels.

In my dad’s case (read Jim’s story, HERE), he quickly became more withdrawn and irritable than he had been before. He had always been a social person. In fact, he was often the proverbial life of the party. In retrospect, my best guess is that he became angrier as his frustration with his impairments increased. Similarly, it appeared that he simply became uncomfortable around other people – possibly due to self-consciousness over his mental decline.

As his condition advanced, he mellowed out a bit. This was probably in no small part due to the medicines that he was taking. (For a primer on the main Alzheimer’s pharmaceuticals, click HERE.)

Now, what happened to Jim may not happen to everyone.[1] Alzheimer’s may manifest differently in various people, depending upon what parts of their brain are most affected. As opposed to withdrawing, some people may continue to appreciate social interactions. But it’s probably a good practice to assume that your loved one’s social habits might change, and at least plan accordingly.

Everyone’s situation is different. So, remember that these are intended to be general tips. To fine tune your own plan, solicit the advice of those – like your family physician – who know your situation more intimately.

11 General Tips

There are several basic things that caregivers should do. So, relax, take a deep breath, and peruse the first list.

1. Plan

You’re probably thinking: “Duh.” Personally, I have to constantly remind myself to do this – despite knowing that it is a good habit. In the context of caring for a person with dementia, I am mindful of the saying: “If you want to make God laugh, tell him your plans.” True enough: Plans may be derailed. You have to be flexible. At the same time, failing to plan is often tantamount to planning to fail. So, even though it’s a bit tedious and anxiety-riddled, try to map out your holiday adventures. With Alzheimer’s, sadly, it’s often a “hope for the best, plan for the worst” type of situation. But, scheduling activities can give you a sense of control and, more importantly, it can help you foresee – and plan for – emotional and physical challenges.

Plan activities that the Alzheimer’s suffer can participate in. For example, especially in early and earl-middle stages, dementia patients are usually able to help with simple baking or decorating tasks.

2. Have Contingency Plans

Am I repeating myself? And I am only on suggestion #2! But, seriously, it’s probably best to over-plan. Have a place for your loved one to go if he or she gets fatigued with the visitors. Have a strategy for how you will deal with stress. Have an activity for him or her to do if the nice dinner party you arranged goes sideways. And so on.

3. Maintain Your Composure

Have I already upset you? Well, there’s more where that came from! But, seriously, you’ll need to remember – as I have to – to be patient! Be patient with grandpa or mom when they can’t remember why there are decorations everywhere. Be patient when they start putting things away that you set out on purpose. Be patient when they act out and say that they don’t feel like receiving visitors. Arguing is worse than useless. Not only will it fail to change your loved one’s mind. But it will leave all parties feeling embittered.

(Say it with me: A person who is cognitively impaired simply cannot reason reliably. That is what it means to be cognitively impaired! Regardless of how good your arguments are, they will never convince. And even if they did convince, sadly, the conclusions are likely to be quickly forgotten.)

4. Take Time for Yourself

How can you be expected to maintain your composure? Good question. It’s great, in fact. I have taken a lesson from a bit of low-level disaster preparation. One of the first things the flight attendants advise on airplanes is that, in the event of an emergency, adults should secure their oxygen masks first. Only afterwards should they place the masks on their children. The reason, clearly, is that the caretaker is only useful if he or she takes care of him- or herself first.

One aspect of this is self-awareness. Admit it to yourself when you feel sad or angry. These are normal reactions to your situation. Hiding these feelings will not serve any good purpose. However, you should try to deal with and keep them under control. See a counselor or therapist yourself, if helpful.

Maintain your own wellbeing and you really will be better positioned to care for your loved one – and to enjoy the holidays. So, start your morning off with a little exercise – and a little more coffee, if that is your taste. Pray or meditate. Then, as the day progresses, schedule breaks for yourself. Finally, conclude a busy day with some decompression activities – even if that is just “vegging out” on a couch, or soaking in a bath tub with a glass of red wine.

5. Arrange for Help

Of course, being able to take periodic breaks depends upon having relief for necessary tasks like supervising the Alzheimer’s patient. Holidays are often characterized by family get togethers. And, thankfully, some of the people present may even be in a more generous mood than they usually are. And they may be off work. Take advantage and just ask for some help with grandma or mom.

If there is no one able – or willing – to help out, then look into “respite care” services.[2] There is usually some way for you to get in some quality alone time without neglecting your loved one.

6. Stage ‘Holiday Practices’

This is partially for the Alzheimer’s sufferer. It may be advisable to get him or her “ready” for the holiday by trying to prepare them for (or remind them) what they will experience. The energy you expend should partially depend on the stage of the disease and, more specifically, how much you expect your loved one to get out of the exercises. You might simply present them with photographs of the people you plan on interacting with. Strolls down memory lane are often fun for Alzheimer’s sufferers anyway.

If you think it might help – or might be fun – you might also try doing “trial runs” of some of the holiday-related activities.

But the exercise is also partly for the caretakers and family members. Because of the disease’s changes, you have got to recognize that things may not be like “old times.” This is unavoidable. There is no need to make things worse by trying to recreate memories or experiences from your past. The envisioned holiday “practice” may give you a better understanding of what the upcoming events may be like.

7. Prepare Others

On the flipside, you will also want to be honest and upfront with family members (or friends) regarding the Alzheimer’s patient’s condition. A phone call or text message should suffice.

Keep things basic. Start by sketching a few generalities. People with Alzheimer’s or other forms of dementia may still take pleasure in holiday events – and visitors. A key is to keep things comforting and manageable. Alzheimer’s sufferers can be easily confused and overwhelmed.

Then outline a few of the pertinent specifics. Just let people know the things that they need to be made aware of concerning your love one’s situation. Briefly summarize some of the most obvious behavioral and personality changes. Prepare family and friends for the fact that, due to decreased memory function, they may not be recognized by the Alzheimer’s sufferer. But hasten to add that their company is still requested and that their love and support are still valued.

Additionally, let people know that they can still feel free to “be themselves” around Alzheimer’s-afflicted individuals. In fact, this is encouraged because it may stimulate latent memories in the sufferer. Be yourself; just don’t be overly boisterous or overwhelming. Note to planner: If someone’s “being themselves” would be highly disturbing, then consider skipping that person’s invitation this year – or inviting them to a different event.

Discuss your holiday expectations, plans, and requirements relatives ahead of time. Be forthright about any odd mannerisms or quirks that may have surfaced since last they met, as well as – and this is important – about any “triggers” that might set off your loved one’s poor behaviors. Try to schedule things so as to maintain as regular a routine as possible for your loved one. This may require shifting the order of events, or perhaps substituting a holiday lunch for what had been planned as a holiday dinner. You may even want to keep entirely to your loved one’s regular daily routine and merely schedule short visits from family or friends.

Again, a key is to remain calm and flexible. Let visitors know that they will probably have to limit their time with the Alzheimer’s sufferer. Apprise people of any communication difficulties. And provide some sort of “code word” that can be invoked in the event that visiting time has to be cut short.

8. Know Your Environment

Alzheimer’s patients generally have marked diminished cognitive capacities. They are prone to wandering and may get into things that are unsafe for them. It is generally not advisable to take the patient into an unknown environment. Instead, it is probably best to keep the Alzheimer’s sufferer in a place that is well familiar and to let people come visit him or her. Even, here, however, do not let your guard down. It is easy to discover that the removal of a barricade or lock (taken down to make visitors feel more comfortable) has left a weakness in your home’s Alzheimer’s-proofing. This can lead to dangerous situations, for example, if grandma or dad get into a restricted area or fall on a usually off-limits staircase.

Beyond safety, however, there is also comprehensibility to consider. To put it differently, if you seat your loved one in a corner, he or she is unlikely to be able to follow the dinner conversation – even if the topic is inherently within his or her ken. Position your loved one so as to maximize his or her interaction and minimize distractions.

Always have emergency-contact numbers (including clinics, doctors, emergency rooms, hospitals, etc.) and medication lists on hand. Finally, arrange for there to be a “respite” room for caretakers and a “quiet” room for the patient, when people find themselves at saturation, stress-wise.

9. Make the Event(s) Familiar

Nothing can be quite as disconcerting to an Alzheimer’s-afflicted individual as the unfamiliar. This puts the holiday planner in a bind, since the holidays are times for departing from the usual. But, if you can tether the holiday events to recognizable things, your loved one is likely to respond better than they would if their world suddenly turns topsy-turvy.

You could hang familiar photographs. You could display familiar decorations – perhaps ornaments that had some sentimental value. If dad or grandma has some dish that he or she likes, try serving that. Use music to your advantage by playing recordings from the person’s past (and in line with his or her tastes).[3] Keep the “KISS” principle in mind: Keep It Simple, “Stupid.” Have visitors engage in simple activities – like arts & crafts – with the Alzheimer’s sufferer.

Above all, try to keep to your loved one’s schedule as much as possible. Do not impel a person with dementia to rise earlier, or stay awake later, than usual. And, don’t skip the naptimes!

10. Make the Event(s) Simple

Like others on this list, this tip pertains both to Alzheimer’s sufferers and to their caretakers. You don’t want the holiday events to be overwhelming for anyone. For the dementia-afflicted person, less can be more. And you have to honestly think through your own ability to plan a holiday event in the face of all the other caregiving responsibilities that you now have. Don’t bit off more than you can chew. If your house has always been the go-to place for far-flung family members, maybe you want to consider hosting a more modest event. Instead of preparing multiple-course meals for visitors, think about asking people to bring dishes.

11. Consider avoiding alcohol

I was tempted to exclude this, or at least bury it in the middle of a more general suggestion. But I feel that it is an important consideration and worth singling out. Alcohol can make an Alzheimer’s-afflicted person’s behavior even worse than it tends to be already. A person with dementia already has impaired judgment. Alcohol would just throw gasoline (or, alcohol, I guess) on that fire. To put it somewhat colorfully, alcohol may not “mix well” with dementia.

Moreover, drinking might put the caretakers in compromised positions. Being under the influence – even if only a little bit – might undermine your ability to watch out for grandpa’s or mom’s wellbeing.

Additionally, and more seriously, it could be contraindicated in conjunction with certain pharmaceuticals. There may be negative (or even severe) interactions with various medications.

Beyond all of this, however, it can put negative social pressure on the person. Your loved one may still want to feel “included” in holiday goings on. If everyone else is partaking, then he or she may want to partake – especially if they did so in years past. And it may be no use to reason with the person about the finer points of their care plan. The bottom line is that dad or grandma may feel excluded.

I don’t want to rain (or snow) on, or otherwise water down, your holiday parade. But I encourage you to just be safe, wise, charitable, and – yes – inclusive in your drink selections. This could be as simple as substituting grape juice for red wine.

Travel Tips

• Avoid Travel (If Possible); Else, Travel (Extra-) Carefully

Here, I want to paraphrase a well-known line from Arthur Conan Doyle’s famous detective, Sherlock Holmes. He once wrote to his companion, Dr. John Watson: “Come at once if convenient. If inconvenient, come all the same.”

I am tempted to advise: “If it’s convenient, avoid travel. If inconvenient, avoid it all the same.”

Traveling is that difficult. But… If traveling is unavoidable (really, truly, seriously unavoidable), then try the following.

• Get medical clearance

Of course, before embarking on any journey, you should consult your loved one’s physician. The doctor can at least give you a “green light” from the standpoint of physical wellbeing. If traveling – whether by airplane or by car – might prove injurious, you’ll want to know this ahead of time.

• Don’t leave your loved one alone!

This is perhaps the most important. It probably goes without saying. But I wouldn’t be able to sleep without at least registering it. Make sure somebody is watching out at all times. (It should be someone who is somewhat acquainted with the Alzheimer’s sufferer and knows about their needs and medication regiment.) Enough said.

• Give Yourself Plenty of Time

This is probably the most obvious. But it’s also one of the most difficult. Remember that you’re not just trying to arrive in a timely manner, you’re trying to travel in a way that is least disruptive to your loved one’s routine. You’ll need extra time to maintain consistency with the Alzheimer’s sufferer’s schedule.

Moreover, you’ll need extra time for decision-making. Keep in mind that many travel-related decisions become harder to make when you must transport an Alzheimer’s sufferer. For instance, it is often difficult under the best conditions to iron out the number of planned stops. But it’s worse where there is a dementia patient involved. On the one hand, you want to give your loved one breaks from the travel. On the other hand, however, every new environment has the potential to precipitate anxiety and confusion.

Similarly, deciding upon target departure and arrival times gets tricky. On the one hand, you may want to avoid (predictable) traffic. On the other hand, travel times that are favorable from a traffic standpoint may be unfavorable from the standpoint of daily routine. Having to awaken early or arrive late might do significant damage to your loved one’s regular sleeping and eating routine.

• Carry an emergency road kit

This should contain all the usual, first-aid essentials (band aids, pain killers, space blankets, etc.). But it should also contain Alzheimer’s-specific items. Perhaps you’ll carry games or other things to distract your loved one if necessary. You may need a CD with a particular piece of music, to calm mom or grandpa down if he or she gets agitated.

Use familiar modes of transportation and avoid peak travel times.

• Know your surroundings

If you’re traveling, make sure that you know emergency contact information and location of local medical centers. This is easier with the advent of travel aids such as Google Maps. All you have to do is click “search for nearby businesses” and you should be able to locate the facilities that you need.

If…you have mobile service.

I think it would be worth the extra time to collect old-fashioned paper maps. Bring them along and mark the locations of places like hospitals. Ideally, at any point on the trip, you should know (roughly) how close you are to the nearest emergency center. I realize that this is a tall order. But, if an emergency did arise, you will be glad that you put in the extra work.

• Let others know you’re traveling with someone who has Alzheimer’s

If you have to stay at a hotel overnight, apprise the staff know about your loved one’s condition. When you need to stop at diners or filling stations, let the attendants know.

One of the easiest ways to do this is by presenting workers with “business cards” that merely read (something like): “My companion is suffering from Alzheimer’s Disease.”

• Prepare stopover points

Again, if you find yourself in the position of having to stay at a hotel, then ensure beforehand that you and your loved one will have necessary items on hand. For example, it’s best to make reservations and to request mobility aids (or make other special requests) in advance of arrival. Think through what you require, and try to arrange for it to be available.

• Prepare the Destination Environment

If you have thoroughly (or at least adequately) Alzheimer’s-proofed your loved one’s house, then you know that there are dangers lurking around almost every corner. It may be unlikely that your destination has been as well prepared as your own home. Odds are, if you are the day-to-day caretaker, then you are going to be much more of an Alzheimer’s-proofing expert than your host.  Go with your gut, and don’t be afraid to request that (reasonable and feasible) changes be made to the environment.

(If needed, review the Five-part “Ultimate Guide to Alzheimer’s-Proofing a Home”: Part 1 – Master List; Part 2 – Senior Safety; Part 3 – Alzheimer’s Tips; Part 4 – Kitchens & Baths; Part 5 – Indoors & Outdoors.)

However, just as a “refresher,” here are a few things that really need to be done in order to ensure the Alzheimer’s sufferer’s minimal safety.

You need to make sure that there are clear walking paths, wide enough to maneuver walkers or wheelchairs (if applicable). Restrict access to dangerous spots in the house (basements, bathrooms, garages, kitchens, staircases, etc.). Watch the temperature of the water heater – and of the coffee.

Holiday lighting can be beautiful and festival, but it can also be discombobulating. Keep confounding lighting displays switched off, or out of sight.

In many ways, Alzheimer’s proofing is like childproofing. (For a primer, see HERE.) Keep decorations familiar (see above) and keep flames (e.g., candles and fireplaces) away from Alzheimer’s patients. Always be prepared for emergency responders by maintaining an up-to-date medication list.

• Other considerations

Make sure that you have planned to provide constant supervision at your destination and that you have arranged for any necessary mobility aids (like canes, walkers, wheelchairs, etc.) to be transported or to be available at the anticipated time of your arrival. Finally, if you have an “alert” bracelet, then bring it!

Gift-Giving Tips

For many people, holiday parties wouldn’t be complete without gift giving. Additionally, many people feel obligated to purchase gifts when they are invited to events. In and of itself, this is hardly bad. And gift exchanging can certainly enrich the experiences and memories. But there are pitfalls.

Alzheimer’s patients – and other dementia sufferers – can harm themselves easily. Particular gifts, like hand tools and knives (or various “crafting” supplies) might pose dangers for your loved one. These gifts may be especially tempting for family members or friends to buy, since your loved one may have used them readily prior to his or her impairment.[4]

Instead, and at least, request that anyone feeling compelled to give gifts stick to items that are safe. Clothing is probably the old standby. Alternatives include musical recordings, video recordings (whether of commercial films or, more personally, home movies), and simple puzzles.

These sorts of gifts are innocuous. However, if a relative wishes to give something of practical use, then steer the would-be gifter to things like medical-alert devices, GPS-tracking watches, and various Alzheimer’s-proofing gadgets for the home or vehicle.

Of course, there is no reason that money has to be spent during the holidays. The “reason for the season” is most assuredly not going into debt. Therefore, consider homemade gifts such as artwork (simple drawings or paintings, for example), baked goods (like brownies, cakes, cookies, etc.), or other handicrafts (like bracelets, ornaments, and so on).

Communication Tips

When it comes to Alzheimer’s, communication is always a challenge. The Alzheimer’s Association has a great article breaking communication tips down according to the stage your love one is in. Interested readers should definitely check it out. But here are some highlights.

• Ask yes-or-no questions
• Avoid negativity or “talking down”
• Be positive and affectionate
• Be patient – Alzheimer’s sufferers often repeat themselves
• Be ready – and willing – to repeat yourself
• Don’t argue!
• Eliminate background noises
• Give them plenty of time to think
• Help your loved one by suggesting words
• Provide visual cues when appropriate
• Remain calm
• Remind the person of happy memories
• Smile!
• Speak clearly and slowly
• Try not to ask, “Don’t you remember?” – he or she doesn’t!
• Uphold the person’s dignity and self-worth
• Use a soothing tone of voice
• Use your loved one’s name when addressing them
• Use your own name when approaching them[5]

Here are some final considerations. Don’t leave the afflicted person out of family events or conversations. They will feel alienated. Don’t take it personally if you are not recognized or understood. And try to pick up on indications that your loved one is becoming agitated or confused. If necessary, change the subject or “redirect” the person towards a calming activity.

Final Thoughts

Celebrating with an Alzheimer’s-afflicted person is not easy – for any involved. It’s hard not to wish for happier times. But, then again, you might find that times can be as happy as you let them be, or as happy as you make them.

Happy holidays.

Sources:

Alzheimer’s Association[6]

National Institute on Aging (U.S.)[7]

Notes:

[1] There are some things that may be assumed to apply, on the balance of probability. For instance, it is often the case that Alzheimer’s sufferers do better recalling older memories than they do forming or remembering newer ones. But, when it comes to degenerative brain diseases, one can never be entirely sure.

[2] You may also want to brace yourself for the so-called “post-holiday blues.”

[3] Keep in mind that Alzheimer’s-afflicted persons can appreciate – and benefit from – music even when, in advanced stages of Alzheimer’s, most of their other faculties have gone. (Read more about the therapeutic effects of music, HERE.)

[4] This is yet another reason to give your relatives advance notice concerning – and an accurate summary of – your loved one’s condition. See, again, the relevant section, above.

[5] Some advisers literally recommend introducing yourself with statements like the following. “Hi, mom! It’s John, your son.”

[6] See, for example, the Alzheimer’s Association publication on the holidays, HERE.

[7] See “Holiday Hints for Alzheimer’s Caregivers,” National Institute of Health, <https://www.nia.nih.gov/health/holiday-hints-alzheimers-caregivers>.