Can Dementia Complicate Travel Plans? You Bet!

“When you are caring for someone with dementia, the thought of a vacation may be wonderful, but the actual reality of the experience can be stressful and complicated.”

I’d like to know what caregiver for an individual living with dementia doesn’t relate to this observation. The sentence – which I quote because I couldn’t have expressed it better – comes from a Hebrew Senior Life blog (ReAge) written by Tara Fleming Caruso, MA, LMHC. Ms. Caruso does more than just sigh or commiserate; she lays out plenty of helpful suggestions regarding preparation and strategy to make the coming, going, and stay successful. Here’s one example:

Schedule a dress rehearsal. Go for a day trip that includes traveling, activities and meals. This will give you an opportunity to practice some of the challenges you may face on your actual trip.

So, if you’re contemplating a trip in the remaining weeks of summer—or, of course, any other time —you really do need to read Ms. Caruso’s article in full at http://bit.ly/16jsaau.  

NOTE: If you have suggestions from your own experiences, please share with us!

Let’s Get Past the Stigma of Dementia

Photo of President Ronald Reagan and Margaret Thatcher by Gerald Penny/Associated Press

Paula Span, in a recent article for her insightful New York Times blog, The New Old Age, considers the terrible stigma attached to dementia: “Alzheimer’s and other forms of dementia, to this day, carry a stigma that most other diseases—heart failure, for example—do not.”

To pursue her point, Span compares how the families of President Ronald Reagan and Britain’s Margaret Thatcher revealed diagnosis of the condition in both world leaders to the public. In Reagan’s case, the disclosure was contained in an open handwritten letter; Thatcher’s family, on the other hand, chose to avoid using the term dementia.

In my work at Charles E. Smith Life Communities, I continually observe how families differ in how they share the reality of a loved one’s dementia with friends and relatives. They seem to feel uncomfortable, embarrassed or pressed to explain why this has happened to someone long recognized for being so smart, vital, and competent.  

But, Span hits the nail on the head when she writes this: “We know that dementia will become an increasingly common condition in coming years, that it’s a terminal disease which doesn’t respect the public stature or intellectual accomplishments of its victims (our emphasis), that it can cause families to grieve for the people they’ve lost long before they die.”

My advice is to be honest, willing to discuss the diagnosis with friends and relatives, and ready to shift the focus to the lasting abilities, not disabilities. As a society, this is what we must do.

Read “A Singular Life, an All Too Common End” by Paula Span at http://nyti.ms/1bCIDuM .

Summertime — With Adjusted Expectations

Family gatherings, reunions, vacations, and visits from friends can all be special times for folks to sit around the living room for some chitchat and catching up. For most families and friends, these occasions are filled with opportunities for togetherness, laughter and memories, but they can also be filled with stress, frustration and sadness for those touched by Alzheimer’s disease or a related dementia.

Here are some tips that may help to make these seasonal gatherings happy and upbeat for everyone.

• Arrange a face-to-face meeting or long-distance phone call with family and friends to discuss the upcoming gathering. Make sure that everyone understands your caregiving situation and has realistic expectations about what you can and cannot do.
• When hosting, give yourself permission to do only what you can reasonably manage. If having company for an entire week is more than you can handle, consider making the visit a little shorter, or send a list of suggested alternative accommodations nearby.
• When visiting, request any necessary preparations in advance, such as having certain foods in the refrigerator and bedroom space set up. If it would be helpful, ask your hosts to label important areas, like the bathroom and bedroom, with signs.
• Stay as close to a normal routine as possible. For example, bathing and eating times should be on a similar schedule to what they are at home. Eating in familiar settings, such as a dining room table, may be less confusing than eating at a crowded, noisy restaurant.

Familiarize others with your situation by writing a letter or email. Here are some ways to phrase your concerns:

• I’m writing this letter to let you know how things are going at our house. While we’re looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.
• You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___. I’ve enclosed a picture so you know how ___ looks now.
• Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.
• Please understand that ___ may not remember who you are and may confuse you with someone else. Please don’t feel offended by this. He/she appreciates your being with us and so do I.
• Please treat ___ as you would any person. A warm smile and a gentle touch on ___ the shoulder or hand will be appreciated more than you know.
• I would ask that you call before you come to visit or when you’re nearby so we can prepare for your arrival.

Involve the person with dementia

Involve the person in safe, manageable family gatherings and activities. Begin slowly by asking the person to help you set the table, wrap packages, prepare food, or hand you decorations.  (Avoid using candies, artificial fruits/vegetables or other edibles as decorations. Blinking lights may confuse or scare the person.)

Maintain the person’s normal routine so that preparations don’t become disruptive or confusing. Taking on too many tasks can be stressful for you and the person with dementia.

Try to be flexible

Consider celebrating with lunch or brunch, rather than an evening meal, to work around the evening confusion. 

Think of positive ways to modify favorite family traditions or even start new ones. 

Allow time to de-stress

Try to work in downtime between activities to avoid the feeling of non-stop frenzy.

Prepare for a post-gathering letdown. Arrange for in-home care through a company like Home Care Solutions (http://bit.ly/12ExdyC). You, as the caregiver, can enjoy a movie or lunch with a friend and reduce post-gathering stress.

Family celebrations are opportunities to share time with the people you love. Try to make these events easy on yourself and the person with Alzheimer’s disease so you can concentrate on enjoying your time together.