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Editor’s note: The Caregiving Chronicles blog has partnered with Century Health Systems to bring additional expert information and advice to the MetroWest caregivers we strive to serve at CaregivingMetroWest.org. Century Health Systems, the parent corporation of Distinguished Care Options and the Natick Visiting Nurse Association, has allowed Caregiving Chronicles to get some valuable insight from its staff for our ongoing series of Q&A sessions with caregiving experts.
In this entry, we discuss some of the issues caregivers may face during the holiday season, particularly if they are caring for a loved one with Alzheimer’s or another form of dementia. Providing insight and some helpful links to further information is Judith Boyko, MBA, MS, RN, who has served as the CEO of Century Health Systems since it was established in 2001.
Boyko holds a Bachelor of Science degree in Nursing from the University of Pittsburgh, a Master of Science in Public Health from the University of Massachusetts, Amherst and a Master of Business Administration from Clark University. She has been recognized by the Home & Health Care Association of Massachusetts as Manager of the Year in 1997 and received the Deborah Blumer Community Health Leader Award from the MetroWest Community Health Care Foundation in 2007. She can be reached at firstname.lastname@example.org or 508-651-1786.
Boyko: Sometimes the long to-do lists, crazy, fast pace, and constant changing of plans at holiday time is just too much. This can be particularly true for both caregivers and people with Alzheimer`s disease and other forms of dementia.
The Alzheimer’s Association’s Florida Gulf Coast Chapter has developed 10 Holiday Survival Tips for families coping with Alzheimer’s.
Also, the Midlands Chapter of the Alzheimer’s Association provides a useful brochure, entitled, “Holiday Tips for the Caregiver.”
Caregiving MetroWest: A disease like Alzheimer’s or another dementia will by its nature change how a family will celebrate the holidays. How can you adjust expectations for yourself, your loved one and other friends and family members?
Boyko: The Alzheimer’s Association offers many good suggestions for adjusting expectations for the holidays:
• Discuss holiday celebrations with relatives and close friends in advance.
“The stress of caregiving responsibilities layered with holiday traditions can take a toll. Invite family and friends to a face-to-face meeting, or if geography is an obstacle, set up a telephone conference call. Make sure everyone understands your caregiving situation and has realistic expectations about what you can do. Be honest about any limitations or needs, such as keeping a daily routine.”
• Be good to yourself.
“Plan to maintain a regular routine while trying to provide a pleasant, meaningful and calm holiday event.
“Give yourself permission to do only what you can reasonably manage. If you’ve always invited 15 to 20 people to your home, consider paring it down to a few guests for a simple meal. Let others contribute. Have a potluck dinner or ask them to host at their home. You also may want to consider breaking large gatherings up into smaller visits of two or three people at a time to keep the person with Alzheimer’s and yourself from getting overtired.”
• Do a variation on a theme.
“Celebrate early in the day or have a noon meal rather than a late dinner, especially if evening confusion and agitation are a problem. If you do keep the celebration at night, keep the room well-lit and try to avoid any known triggers.”
CGMW: How should you deal with interactions between your loved one and friends or family who may not be aware of their condition or are uncomfortable about the situation?
Boyko: Alzheimer’s can diminish a person’s ability to communicate. These tips may help you understand each other.
• Be calm and supportive if the person has trouble communicating.
• Speak slowly with a relaxed tone.
• Avoid criticism. For example, when someone forgets a recent conversation, avoid saying, “Don’t you remember?”
• Address the person by name.
• Be patient, flexible, and do not argue with the person with Alzheimer’s
CGMW: How can you still involve your loved one in holiday activities and traditions?
Boyko: Here are some ideas:
• Build on past traditions and memories.
Focus on activities that are meaningful to the person with dementia. Your family member may find comfort in singing old holiday songs or looking through old photo albums.
• Involve the person in holiday preparation.
As the person’s abilities allow, invite him or her to help you prepare food, wrap packages, help decorate or set the table. This could be as simple as having the person measure an ingredient or hand decorations to you as you put them up. (Be careful with decoration choices. Blinking lights may confuse or scare a person with dementia, and decorations that look like food could be mistaken as edible.)
• Maintain a normal routine.
Sticking to the person’s normal routine will help keep the holidays from becoming disruptive or confusing. Plan time for breaks and rest.
CGMW: The holidays are a time when many people see friends and family they don’t see regularly during the rest of the year. For a caregiver, this can be an opportunity to show how much they are doing in their caregiving role and to ask for help. Are there any strategies or suggestions you can offer to a caregiver needing help from other family members?
Boyko: Sometimes, asking for help is difficult. The following are suggestions to get other family members or close friends involved in caregiving. These suggestions are from the CaregiverStress website:
• Give each person a responsibility, even if it is small, to help spread out the tasks. Even if your brother lives 1,000 miles away, make it his responsibility to call your elderly parent to check in at the holidays or to give you a gift of a visit for a week each year to allow you to take your own family vacation.
• Divide up the tasks. Individual family members and/or invited close friends can each be asked to provide an appetizer, side dish, beverage or desert for the holiday meal. Perhaps one is able to help with transportation of your loved one. Group assistance with clean-up following a holiday celebration is very helpful; “many hands make light work.”
• Make sure to converse with other family members about your elderly relative. If you don’t express your concerns (e.g., debilitating health, amount of time you are spending caring for them, etc.), you can’t expect your other family members to know what you are thinking and feeling.
• Don’t be a control freak. If you want to control every aspect of the care, other family members may be less apt to step in, thinking you have it all under control. They’ll be less able to understand your stress level if they believe you are creating it yourself.
• If you don’t have other family members to help out, consider joining a local caregiver support group or involving outside friends, church members or professional caregivers to share the duties.
CGMW: How should you prepare your loved one for holiday celebrations, gatherings and events?
Boyko: From the Alzheimer’s Association website:
“Preparing your loved one for the upcoming holiday events can allow both of you to enjoy the warmth of the season.
• Talk about and show photos of family members and friends who will be visiting.
• Have a “quiet” room in case things get too hectic.
• Play familiar music and serve favorite traditional holiday foods.
• Schedule naps, especially if the person usually takes naps.
• Schedule family and friends visit times”
The holidays are a time when families gather and celebrate, often including relatives with dementia. Bringing Great Grandmother Alice home from a care facility for Christmas day or even just dinner is something families need to prepare for to make it a fun and fulfilling day for all. Talk with the staff at the facility beforehand and find out what she can do by herself and what she’ll need help with. How mobile is she? Does she need help in the bathroom?
CGMW: What are some gifts that would be particularly helpful or useful for someone with dementia or for someone caring for a loved one with dementia?
Encourage safe and useful gifts for the person with dementia.
Boyko: Diminishing capacity may make some gifts unusable or even dangerous to a person with dementia. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: comfortable, easy-to-remove clothing; an identification bracelet (available through MedicAlert + Alzheimer’s Association Safe Return), audiotapes of favorite music, videos and photo albums; subscriptions to magazines or cable TV; pre-paid gift cards for long-distance telephone service. Avoid difficult or unsafe gifts, e.g. tools, instruments, utensils, complicated or challenging board games; electronic equipment.
Put respite care on your wish list.
If friends or family ask what you want for a gift, suggest a gift certificate or something that will help you take care of yourself as you care for your loved one. This could be a cleaning or household chore service, an offer to provide respite care, or something that provides you with a bit of rest and relaxation. And, when the holidays are over, arrange for some respite care for your loved one, so you might enjoy a movie or maybe a meal out with a friend.
CGMW: What are some safety concerns to consider for the holidays in regard to decorations, gatherings of people, traveling, bad weather, etc.?
Boyko: Here are some suggestions provided by the National Institute on Aging, regarding safety around holiday time, for those living with Alzheimer’s disease and other dementias:
• Instead of elaborate decorations, consider choosing a few select items to celebrate holidays. Make sure holiday decorations do not significantly alter the environment, which might confuse the person with Alzheimer’s disease.
• Holiday decorations, such as Christmas trees, lights, or menorahs, should be secured so that they do not fall or catch on fire. Anything flammable should be monitored at all times, and extra precautions should be taken so that lights or breakable items are fixed firmly, correctly, and out of the way of those with Alzheimer’s disease.
• As suggested by most manufacturers, candles of any size should never be lit without supervision. When not in use, they should be put away.
• Try to avoid clutter in general, especially in walkways, during the holidays. Large gatherings, weddings, family reunions, or picnics may cause anxiety. Consider having a more intimate gathering with only a few people in your home. Think about having friends and family visit in small groups rather than all at once. If you are hosting a large group, remember to prepare the person with Alzheimer’s ahead of time. Try to have a space available where he or she can rest, be alone, or spend some time with a smaller number of people, if needed.
Following are a couple of travel tips provided by LightBridge Healthcare Research:
• Try to travel to familiar, stable, and well-ordered settings. Try to make the trip there as short and simple as possible.
• Try to travel during the person’s best time of day.
CGMW: What are some suggestions for celebrating the holidays if your loved one is in a hospital, nursing home or assisted living facility?
Boyko: The Alzheimer’s Association offers these suggestions at the Caregiver Center on its website:
“A holiday is still a holiday whether it is celebrated at home or at a care facility. Here are some ways to celebrate together:
• Consider joining your loved one in any facility-planned holiday activities
• Bring a favorite holiday food to share
• Sing holiday songs and ask if other residents can join in
• Read a favorite holiday story or poem out loud
Other helpful information can be found at this link.
You may be able to bring a loved one home from a facility for Christmas; if so, and if possible, plan to visit a few times in the weeks before the holiday. Changes in routine, place and people can be very upsetting. Try to make the transition as smooth as possible. Tell him/her several times what to expect and who will be in attendance over the holiday. If your loved one asks the same question over and over again, remind him/her calmly that you’ve talked about it before, answer the question and move on.
CGMW: How important is it to maintain your loved one’s routine during the holidays and do you have any suggestions for doing that amid the chaos that the holidays often bring?
Boyko: From the Aging Care website:
• Christmas decorations and festivities often create changes in the environment and daily routine, which may cause someone with a cognitive or memory disorder to become agitated or confused.
• Maintain a normal routine as much as possible: eating at the same time, the usual setting, keeping regular wake-up and bed-times.
• Excessive, noise, commotion, loud crowds and rowdy children can cause confusion and agitation in your loved one.
CGMW: Do you have any other thoughts or advice for people caring for a loved one with dementia this holiday season?
Boyko: The Aging Care website has these final words:
“Despite your best efforts, you still may feel more guilt and frustration during the holiday season. These feelings are normal and other caregivers experience the same. When this happens, take a moment and remember: Only so much is within your control. Don’t feel guilty if the holiday is not perfect and has a few bumps in the road. You can make the holiday season a good experience for everyone involved by adjusting what you typically expect from the holiday season. Prepare others, and handle situations as they arise with a good attitude and acceptance.”