Joyful Holidays Despite Dementia

CARE TIPS:

This season is a time filled with family and friends, laughter and reminiscing. Learn ways to prevent dementia's stress, frustration, and loneliness. Fill the holiday with joy.

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Caring for a loved one with dementia during the holidays can be challenging, but with a little preparation, everyone can help bring out the full joy of the holidays.

Problems

• Friends and family might feel uncomfortable visiting, not knowing what to expect, what to say, or what to do in response to changes in a loved one's behavior and personality.
• You might not receive invitations to traditional social gatherings, leaving you feeling isolated and alone.
• You might feel "trapped" by having to remain at home instead of visiting friends, doing holiday shopping, or engaging in the season's social activities.

Situations like these can lead to feelings of resentment toward the person with Alzheimer's and feelings of guilt if you are fortunate enough to enjoy any holiday activities at all.

When you care for a person with a dementia such as Alzheimer's, the stress can be overwhelming. In addition to trying to keep a calm, simple routine, you might also feel compelled to maintain traditions for the rest of the family with all the hustle and bustle so common to the season. Furthermore, many pleasant memories of past holidays are now being replaced with anxiety, frustration and sadness.

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Solutions

It doesn't have to be this way. By using "an ounce of prevention," caregivers can alleviate some of the misery and frustration. The following tips can help make the holidays joyful once again.

1. Set Expectations

Familiarize family and friends with the behavior and condition of your loved one. Let them know the situation and protocol for visiting by writing a letter. For example:

"To my family and friends:

I'm writing 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 "Name" has changed since you last saw him/her. Among the changes you may notice are "XYZ". I've enclosed a picture so you know how "Name" looks now.

Because "Name" sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.

Please understand that "Name" 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 him/her as you would any person. A warm smile and a gentle touch on "Name's" 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. Caregiving is a tough job, and I'm doing the very best I can. With your help and support, we can create a holiday memory that we'll treasure."

2. Adapt Gift-Giving

Share a list of useful and needed gifts with family and friends. They will want to bring gifts for you both and will appreciate the help you offer. You might want to suggest items that will make bathing, dressing and living easier.

Bathing:

• A waterproof radio
• A shower/bath chair
• A hand-held showerhead
• A pretty night light
• A long-handled shower brush
• Non-stinging shampoo
• Soap-on-a-rope

Dressing:

• Easy-to-remove clothing in comfortable, machine washable fabrics
• A jogging suit that pulls on or has Velcro fastenings
• A brightly colored cardigan sweater
• Slip-on shoes/slippers with Velcro closing
• Slipper socks with non-skid soles
• Leg warmers

Living:

• Avoid gifts such as dangerous tools or instruments, utensils, challenging board games, novels, complicated electronic equipment or pets. Here are a few recommendations:
• A NERF (sponge) ball
• A Medic-Alert® + Safe Return® identification bracelet/necklace
• A portable player with a tape or CD of favorite music or messages from family and friends
• A photograph album filled with people and places that are a part of your loved one's past, with a simple caption describing each photo
• A neighborhood picture book
• Photos of the house in which you live, and of the street on which you live, and perhaps familiar local landmarks, stores and neighbors
• Videos of family get-togethers

Memory Stimulation:

• Recordings of old radio/TV programs and CDs of familiar music
• Original audio or video tapes
  
  • Ask a friend or family member who owns a camcorder to make a video. Speak directly to your loved one and use close-ups of your face and other friends and family. Repeat your name and identify your relationship, speak reassuringly and slowly; this is a gift which will be used for a long time, and can never be used up. Videos can be viewed when you need to be away for a time to keep your loved one calm.
  • Record an audio tape for your loved one. For example: "Hello (name of loved one). This is your (wife, husband, daughter, etc.) You live at (address)."
  • Continue by telling about your life and times that you have shared. Be sure to repeat names frequently, and to convey the message that you are speaking to a person about whom you care deeply.
• A felt board with names of family members and/or familiar objects cut out and backed with Velcro. A photo should accompany each name in order to play "Match 'Em."

TIP: Don't be afraid to ask for the help and support you need.

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3. Prepare

• Prepare your loved one in advance for the upcoming events.
• Place seasonal books, magazines and decorations about the house
• Talk about the people who may be coming to visit
• Play familiar seasonal music
• Serve favorite seasonal food
• Do some simple preparation ahead of time — watching you will familiarize your loved one with the festivities to come

4. Plan for "Down Time"

• Plan for some quiet-time activities.
• Have a favorite tape or DVD on hand
• Be prepared with some simple repetitive activity to maintain calmness: cracking nuts, folding napkins, or shelling peas
• Leave time to allow yourself and your loved one to take a walk
• Keep some old photo albums handy — it is usually calming to go through them together

TIP: Make sure the family understands your needs and wishes.Give yourself permission to do only what you can reasonably manage.

5. Streamline Your Traditions

• Hold a family meeting or conference call to discuss the upcoming event
• Make sure that everyone understands your caregiving situation and has realistic expectations about what you can and cannot do
• Run through celebrations and rituals of years gone by and determine which of these to continue and what new traditions may be initiated
• Set limits as to what you are able to do — and what is not possible for you
• Consider holding a simpler gathering with fewer people present
• Discuss having a potluck dinner or asking others to host the holiday at their home
• Look for ways to simplify shopping and gift-giving

TIP: Sharing a list of practical gift ideas will make the holidays happier for everyone involved.

6. Involve the Person with Dementia

• Choose tasks that are appropriate for your loved one to help with. Allow sufficient time to get them done. For example:
• Baking cookies or mixing dough
• Preparing and putting up seasonal decorations (stay away from artificial fruits and vegetables and blinking lights, which may lead to confusion)
• Simple cleaning tasks like polishing silver, vacuuming or dusting
• Wrapping packages
• Preparing a salad
• Setting the table

7. Timing Is Everything

• Celebrate early in the day to reduce the likelihood of "Sundowner Syndrome" (evening confusion)
• Have a holiday lunch rather than a dinner
• Don't serve alcohol, use sparkling apple juice
• Keep the lights on to keep the room bright

TIP: Don't have the television playing when guests are there.

8. Give Yourself a Gift

• Take some time off
• Cultivate your sense of humor — it will help to keep you healthy
• Ask a friend or relative if they can provide specific help. For example, "Can you please take "Name" to his doctor's appointment on Tuesday?" or "Can you come over to watch "Name" for three hours next Saturday while I go shopping?"
• Arrange for home care so you can enjoy lunch or a movie with a friend

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Related:

• The Gifts of Giving 
• Holiday Hints

Source:

• This article is based on material originally prepared by Judy Wunsch, Alzheimer's Association, California Southland Chapter.