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Helpful tips for family caregivers

Dementia: Is travel realistic?

If you are considering a trip with your loved one this summer, do yourself a favor and reflect on the realities of travel when a person has dementia. The disease is likely to be a prominent third guest in your plans, requiring consideration every step of the way. The disruption may make this less of a “vacation” than you had hoped. Changes to routine and not having the usual resources at the ready could prompt upsetting behaviors from your loved one, resulting in greater stress for you.

Consider these questions before buying your tickets:

• Does your relative get easily agitated, disoriented, or wander? If these problems occur at home, they are likely to be worse when traveling.
• How does your loved one do with day trips? How long can they stay seated and belted in? Are they easily distressed in new places? In crowds? Do you know strategies to help soothe them when not at home?
• Has the doctor signed off on the trip? Any reservations or concerns?
• What is the best mode of transportation? A car allows more flexibility for start and stop. A train relieves you of driving, but is public, slower, and difficult if your relative has balance issues. It’s also potentially overstimulating for a person with dementia. Likewise, airports can be distressing, but the airlines have some services to help.
• Can you provide a home base at your destination? Can you retain many of your daily routines, simply in a new location? Will there be a quiet room where you are staying? A hotel room away from the hubbub of kids might be an important refuge.
• Are your plans flexible? If your loved one is having a bad day, can you sit the activities out? Can you build in a gap day between arrival and big events?
• Who is the trip for? You? Your loved one? Friends or family at your destination? Especially if it’s been a while since you traveled together, it could be that the disease has progressed to a point that merits significant reevaluation. Honestly ask yourself, “Is this trip realistic?” Might you be better off planning for someone to stay with your loved one so you can go off on your own? Perhaps it’s better for family to come visit you. Be open to alternate possibilities.

Senior bullying and exclusion

About 20% of seniors living in communal settings experience bullying in one form or another. Cliques and power hierarchies seem to be a human tendency. If your loved one is the focus of bullying, you might notice withdrawal from others or depressed mood. Or you might hear them say that a particular person is “mean” or notice they avoid certain rooms, routes, or activities.

What is bullying? It’s generally defined as unwanted aggressive behavior against a seemingly less powerful person. Those most at risk are individuals new to a facility, particularly if they are single and/or seem timid or shy. Also, those with dementia. Bullying comes in several forms.

• Physical: Pushing or hitting
• Verbal: Snide or critical comments; bossing someone around
• Relational: Negative gossip or rumors; shunning
• Property: Stealing or vandalizing

Why do people bully? It’s not always intentional. A person with dementia might lash out or say something rude because of confusion or fear. Other people bully due to feeling a loss of control in facility life. Bullying can be an unconscious way to regain a feeling of personal power.

What can you do? Talk to the administration. If you can, relay specifics, especially if you witnessed an event. Ideally, every facility has an antibullying policy and procedure and has trained staff to recognize bullying and intercede. Perhaps staff can encourage a buddy for your loved one, as bullies tend to pick on people who are alone. While moving your relative may be tempting, the truth is that bullying happens everywhere. It may not be better at a new facility. If you do choose to move, be sure there is an antibullying policy in place and that it’s enforced.

If it’s your relative doing the bullying, some counseling may be in order to address the root cause. They may, for instance, have a mild cognitive impairment.

Meaningful end of life conversations

Hollywood would have us believe that profound deathbed conversations occur just before the last breath is drawn. Not so! The last few weeks of a person’s life are often marked by extreme fatigue, long hours of sleep, and sometimes distracting levels of pain. Conversations require too much energy.

If someone you care about has been given a terminal diagnosis, it’s best to talk sooner rather than later. Typically, the older adult and their relatives want to have a conversation, but there’s worry that emotions will get overwhelming. And worry about how to start. Look for a time when stamina is good, pain is gone or at a minimum, and try an opening such as, “I was wondering if you had thoughts about …” Once past the initial discomfort, there is usually great relief and greater intimacy ensues.

As you prepare, ask yourself, “What do I need to say?” “What is it that I want out of communicating?” The most meaningful topics usually involve

• expressions of love. These can be verbal. But nonverbal gestures (loving gaze, holding hands, hugging, kissing) are also extremely powerful.
• spiritual or religious affirmations (as appropriate). Following your relative’s beliefs, it may be soothing to talk about the afterlife. You might share expectations of seeing each other again in the future.
• practical communications. Perhaps further discussion about wishes concerning where to die. Or arrangements, such as burial. Or signing legal paperwork.
• difficult relationship talk. This is the most challenging. And also the most meaningful. Again, keep the outcome in mind. If your intention is a positive resolution to unfinished business, focus on efforts to understand, accept, and forgive. Let go of accounting for every past hurt.

Even if it’s late in the process and is only a monologue, your loved one can still hear you. It’s worth the effort to verbally and nonverbally create positive closure.