Keeping the Cheer in the Holidays
‘Tis the season to be happy. Or is it?
While those facing Alzheimer’s disease or a related illness in their family might question the sentiment, experts say that it is possible to not only keep the cheer in the holidays, but also to savor them.
In advance of the holidays, be candid with family and friends about your loved one’s condition and your concerns, and enlist their support. In cases where resentment brews because one family member assumes the primary caregiving role, use this season of giving as an opportunity to discuss sharing family responsibilities and to strive for family togetherness.
Set realistic expectations.
Consider both what the individual with dementia is capable of and what you, as a caregiver, can handle given your demanding role. Then, put celebrations into manageable proportions. This can help decrease stress and head off feelings of depression that stem from unrealistic expectations, both for you and your loved one.
Select appropriate activities.
Be mindful of the individual’s current mental condition and do special things that they can still appreciate. Engage your loved one in singing and dancing since these abilities tend to remain intact longer. Involve them in some rituals, whether it is lighting the menorah, decorating the tree or baking cookies. Try to spark memories by bringing out family photographs or heirlooms. But do not demand mental performance by asking them to name people, places or other facts. Rather, help stimulate memories by offering descriptions as you present each object.
Pare down traditions
With round-the-clock caregiving, it may not be feasible to juggle all of your religious and ethnic observances. You can still keep traditions alive; just reduce their number to avoid feeling overwhelmed and frustrated. Ask your loved one which traditions to choose; it is another way to involve them. Even though they may not recall later on, making the effort reinforces the fact that you care what is important to them and will make you feel better as a caregiver.
Adapt family gatherings
Since crowds, noise and altering routines can aggravate confusion and other behavioral problems, revising your get-togethers may be in order. For example, instead of entertaining the whole clan, limit the number of attendees at a holiday dinner or spread out several smaller gatherings on different days. Mark a calendar with upcoming visits to make your loved one feel special.
Stick with familiar settings
Because new environments can increase disorientation and pose safety concerns, discard restaurants or relatives’ houses in favor of your own home. Likewise, if Mass is still important to your loved one, consider how they can participate. For example, take your loved one to an earlier, less crowded service; if they can not leave their home structure, watch a Mass on TV or ask clergy to make a house call.
Head off problems.
Avoid alcohol, which may cause depression, increase the risk of falls and add to the loss of brain cells. Try to schedule holiday activities or visits earlier in the day before the potential for sundowning’”behavioral problems that typically occur toward dusk among those in the middle stages of dementia. And, in preparing for holiday celebrations, do not re-arrange furniture or create obstacles-both are accidents waiting to happen.
Limit holiday decorations
Decorations can still adorn your home, but in moderation. Hang cheerful ones that recall memories and family traditions. Do not overdo the ornaments on a Christmas tree. Remember that hauling out a lifetime of garlands, religious items and wall decorations can clause clutter and over stimulation, which can intensify disorientation and agitation. Ensure, even more than usual, that decorations do not block pathways or pose potential fire hazards.
Re-think gift giving
Devise ways to include your loved one, depending on their capabilities. You might take them to a store to buy presents, and offer extra guidance. Or, you can buy the gifts for them and wrap them together since many individuals with dementia like handling paper. In giving presents, pick ones appropriate for someone with the disease. Instead of something material, try things that are simple, personal and sentimental. For example, photographs and heirlooms provide the opportunity to reminisce, a gift in itself.
While it is important to include children, it is just as vital to consider their feelings. Address the fear factor by helping them have special moments with their relatives. If their loved one uses inappropriate language or easily becomes angry during the visit, explain that this behavior is not personal or intentional; it is part of the disease. Youngsters’ excitement about the holidays can be contagious. Singing songs together can strike a chord for someone with dementia. Or having an elder teach dominoes to children is a good way to foster interaction and make your loved one feel they have something to offer.
Join a support group
A forum to express feelings and socialize can help overcome sadness for both caregivers and individuals in the early stages of dementia. Unfortunately, the incidence of depression ranks high during and after the holidays. Consult with a healthcare professional if you detect warning signs of depression: tearfulness, poor eating habits, withdrawal, inability to sleep, and physical complaints.
The greatest gift at the holidays: time. Ask a family member, friend or healthcare professional to keep your loved one company so you can relish some respite time for some holiday shopping, a walk in the park, checkers with an old friend or whatever present you want to give yourself.
How to Let Go & Enjoy a Getaway
Vacations can help caregivers get back on track. While small breaks and relief from daily routines are important, they fall short of the revitalizing effect of a longer respite. The result of a vacation is not just getting away; it is a ticket for caregivers to change their focus, interact meaningfully with others and improve their own emotional health.
Here are some examples:
So to even bring a vacation into the realm of possibilities, caregivers need to let go of self-limiting beliefs.
“No one can care for them the way I do.”
While such a belief is probably true, the erroneous implication is that no one can do a good job in caring for your loved one. Having a support caregiver, a back up, and developing trust in them can resolve this practical obstacle. However, it is difficult to cultivate this trust if you retain the idea that you are the only one who can get it right.
“If something happens, I couldn’t live with myself.”
At the core of this concern is an illusion of complete control. The belief is that nothing can go wrong if you are with your loved one. That your vigilance enhances care may hold a degree of truth. But the underlying notion that your presence is the main reason that things are all right creates an exaggerated sense of control or responsibility. Caring for an individual with Alzheimer’s disease is dependent on a knowledge base and skill set that many support caregivers have or can learn. No matter how loving, watchful or competent one’s care, something can always happen, whether you or someone else is there.
“I can’t enjoy myself when they are so sick.”
It is hard to allow yourself enjoyment when someone you love struggles. The difficulty in overcoming this belief stems from an unrealistic hope that the more you experience their struggle, the more assistance you will be. Your help only comes from positive energy and strength, not shared suffering. Giving yourself permission to enjoy yourself can enhance the care you provide.
“They need me, They will fall apart without me.”
The overwhelming sense of responsibility is apparent in these statements, but underlying them is an attempt to predict the future. Your loved one is vulnerable, but not necessarily in the way you can foretell. They may be more resilient than you think. In addition, while it is true that they need you, being away for a period of time does not mean that their quality of life will be sacrificed.
Why is it important to let go and take that getaway?
- Self-limiting beliefs can lead caregivers to shoulder immense feelings of responsibility, self-sacrifice, anxiety, resentment, and guilt. Over an extended period, such feelings can hurt a caregiver’s judgment and emotionally contaminate the care environment. Likewise, they are often perceived by the care receiver and begin to complicate the relationship.
- A primary caregiver’s quality of life and emotional health are pivotal to quality of care; recognizing this is a critical step in reducing guilt about taking a vacation. When caregivers address their own needs, they will be better able to meet their loved one’s needs. These escapes can recharge their battery and boost their relationship with their loved one.
- Vacations provide an important change in environment. Freedom from routine, fresh encounters, conversations with new people and experiencing the world differently offer an opportunity to continue to grow and participate in life in a role other than that of a devoted caregiver.
- After a few vacations, the issues that previously grounded a caregiver will likely become less pronounced and easier to manage. Once caregivers understand the significance of their own well-being, vacations become an important part of a caregiver’s life’”not an indulgence.
Contributed by Robert W. Figlerski, Ph.D., a clinical psychologist and a partner in First Opinion, Ltd., a New York-based consulting firm that provides services to skilled nursing facilities.