Tips for Getting the Most Out of the Holidays for by latenightwaitress


									  Tips for Getting the Most Out of the Holidays
     for People with ALS and Their Families
The holidays are usually a bit tiring and challenging -- and sometimes even emotionally exhausting -- for
all of us. But for people with ALS and their families, the combination of coping with the disease on a
daily basis and managing the demands of the holidays can be especially tough and frustrating. Experts in
helping people with chronic, serious diseases cope offer wide-ranging suggestions.

Managing Expectations
The holidays carry many levels of expectations, from friends, family, the workplace, and ourselves, and
many are built on shared experiences and traditions established over the years. The problem is, when
circumstances change, it’s tough to change our expectations.

So, a parent with ALS who has for 15 years put up the neighborhood’s most stellar display of lights may
feel like he or she is letting everyone down since climbing a ladder is no longer an option. Or, a favorite
aunt may feel extremely surprised and disappointed that a person with ALS decides not to fly to join the
extended family on Christmas Eve. Perhaps the process of getting, addressing and sending holiday cards
seems daunting.

Holidays can act like a lightening rod that highlights all the physical and social concerns around ALS.
Memories or unresolved grief about previous losses -- or the disease itself -- can trigger sadness and
depression. Even without those complexities, just the normal demands of the season -- socializing, eating,
shopping, celebrating -- can be overwhelming for people with ALS and their families.

Experts suggest people with ALS think through how they can best manage their own expectations, and
those of their friends and families. Sometimes it means telling a hostess that you cannot promise to be
able to make her party, but would like the freedom to call 24 hours beforehand and let her know if you
are able to make it. It could mean negotiating with friends and family a new way to exchange presents,
perhaps picking names out of a hat so no one buys more than a single gift, making the shopping process
far more manageable for all. It may mean sending email or phone greetings rather than individual, hand-
addressed cards.

Simplifying is sometimes easier than it would seem, and people with ALS should be reassured that more
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and more families -- even those without ALS -- are finding ways to make the holidays less stressful and
more manageable.

Planning, Planning, Planning
Putting some time and effort into carefully planning key aspects of the holiday can pay off. Experts say
families should feel comfortable inviting a crowd into their home, if they want to, as long as they first

master the art of delegation. Make it pot luck, ask someone to come early to set the table, ask another to
stay late to help with cleaning up. If people are asked for their participation in advance, they probably
will be pleased to help.

When it comes to shopping, planning also pays big dividends. Make a list and decide what can be
delegated, what can be done online, and what needs a personal touch. The earlier the process is begun
the easier it will be; crowds, parking problems and lines are hard to tolerate for everyone, but especially
for people with ALS and their families. If it’s already too late to start early, avoid the weekends and opt
for the dinner hour or evenings, since stores and malls are typically less busy then.

Crystallizing What is Most Important
You cannot do it all. So it’s helpful to do some soul searching and identify what you truly like most
about the holidays and be sure to include those elements in your plans. For example, some people have
always loved driving around the neighborhood looking at holiday lights and decorations. Some enjoy the
local parade. Others appreciate going to see the ‘‘Nutcracker’’ or hearing Christmas music at the
symphony hall. If there are special foods you like, certain decorations you treasure (big, lighted trees, or
snow globes, or a much-loved Menorah), or favorite music, make sure you’ve built those things into your
holiday celebration somehow.

Finding Reasonable (But Good) Substitutions
Depending on your particular situation, it may be that some of your favorite holiday activities
are feasible. But it is possible to find some reasonable substitutions that may kindle a similar joy to what
you have experienced in the past.

For example, if you loved to ski, you may find a sleigh ride in the moonlit forest fun. If you like going to
the Rose Parade or going to the football game -- but you feel it may be a little overwhelming to manage
this year -- you could have some friends over to watch the parade or the game on TV. If you always liked
to read a Christmas story to the family by the fire, and you are having trouble talking, perhaps you could
all gather around and you could listen to the story on the stereo or someone else could do the reading
this year.

It won’t be the same. It will be different. But it still might be fun and memorable. Don’t just ignore
things you’ve loved to do. Try to find a way to get at least the flavor of the experience, if you can.

Building in R & R
Amidst all the activity, be sure to build in time for rest and relaxation. Take a nap, get some fresh air,
watch TV, do a puzzle…whatever works. If you don’t plan for this important time, it may escape you,
and it is essential to ensuring you’ll be able to get the most out of the holidays.

                                                     By Barbara Bronson Gray, RN, MN

                                                      2                                       Updated 10/2008

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