If you're like many who are caring for a loved one with dementia, the holiday season may not feel so merry. Memories of better times may surface as reminders of what you've lost or what has changed. At a time when you believe you should be happy, you may instead find that stress, disappointment and sadness prevail.
At the same time, you may think that you should live up to expectations of family traditions and how things ought to be. As a caregiver, it isn't realistic to think that you will have the time or the energy to participate in all of the holiday activities as you once did.
Yet, by adjusting your expectations and modifying some traditions, you can still find meaning and joy for you and your family. Here are some ideas.
Keep it simple at home
If you're caring for a loved one who has Alzheimer's at home:
- Make preparations together. If you bake, your loved one may be able to participate by measuring flour, stirring batter or rolling dough. You may find it meaningful to open holiday cards or wrap gifts together. Remember to concentrate on the process, rather than the result.
- Tone down your decorations. Blinking lights and large decorative displays can cause disorientation. Avoid lighted candles and other safety hazards, as well as decorations that could be mistaken for edible treats — such as artificial fruits.
- Host quiet, slow-paced gatherings. Music, conversation and meal preparation all add to the noise and stimulation of an event. Yet for a person who has Alzheimer's, a calm and quiet environment usually is best. Keep daily routines in place as much as possible and, as needed, provide your loved one a place to rest during family get-togethers.
Be practical away from home
If your loved one lives in a nursing home or other facility:
- Celebrate in the most familiar setting. For many people who have Alzheimer's, a change of environment — even a visit home — can cause anxiety. Instead of creating that disruption, consider holding a small family celebration at the facility. You might also participate in holiday activities planned for the residents.
- Minimize visitor traffic. Arrange for a few family members to drop in on different days. Even if your loved one isn't sure who's who, two or three familiar faces are likely to be welcome, while nine or 10 people may be overwhelming.
- Schedule visits at your loved one's best time of day. People who have Alzheimer's tire easily, especially as the disease progresses. Your loved one may appreciate morning and lunchtime visitors more than those in the afternoon or evening.
Care for yourself
Consider your needs, as well as those of your loved one. To manage your expectations of yourself:
- Pick and choose. Decide which holiday activities and traditions are most important, and focus on those you enjoy. Remember that you can't do it all.
- Simplify. Bake fewer cookies. Buy fewer gifts. Don't feel pressured to display all of your holiday decorations or include a handwritten note with each holiday card. Ask others to provide portions of holiday meals.
- Delegate. Remember family members and friends who've offered their assistance. Let them help with cleaning, addressing cards and shopping for gifts. Ask if one of your children or a close friend could stay with your loved one while you go to a holiday party.
Trust your instincts
As a caregiver, you know your loved one's abilities best. You also know what's most likely to agitate or upset your loved one. Resist pressure to celebrate the way others may expect you to. Remember, you can't control the progress of Alzheimer's or protect your loved one from all distress — but by planning and setting firm boundaries, you can avoid needless holiday stress and enjoy the warmth of the season.
With Thanksgiving around the corner, most families are putting together their shopping lists and assigning different dishes for people to bring. If someone in your family has Alzheimer’s, there are some additional considerations that need to be planned in advance to increase the likelihood that everyone will be able to enjoy the day.
Most people with Alzheimer’s do best with a predictable daily routine. By definition, a holiday represents a break from the routine, which can be disorienting. Try to keep most the routine of a normal day, and consider whether one large Thanksgiving gathering with all the family will be better than shorter visits throughout the weekend with different relatives.
Plan ahead but don’t explain ahead
There is a tendency to try to prepare the person with dementia for any event that will change the daily routine. However these efforts can confuse the person more and make them anxious, or have no effect as the person does not remember your coaching. If you are taking your loved one to a different setting, leave plenty of time to get there and explain as you go.
For someone with Alzheimer’s, focusing for long periods of time can be exhausting. You may want to think twice about a schedule that has your loved one “on the go” for hours at a time. Consider whether your Thanksgiving gathering could be just for dessert. Or perhaps plan to arrive just before the meal and leave shortly afterwards.
What to say after hello?
This is a common problem families and friends encounter as those with dementia can find it hard to engage in the give and take of normal conversation. Plan a few activities that people can do with your loved one. These activities allow for an easier conversation and makes your loved one feel part of the preparations. These activities can include:
- Setting the table
- Folding napkins
- Stirring or mixing ingredients with supervision
- Helping with decorations on the table, such as name cards or flowers
- Sweeping the walkway
- Helping to fill a bird feeder
Old photo albums or digital picture frames can be a great way to start a conversation about times that your loved one can still remember. If you don’t have old photos, you can still ask about past times, what they remember about holidays when they were young, their favorite traditions and foods.
Many older people no longer have a lot of physical affection. A touch on the shoulder, holding hands, a hug all communicate love and caring to people when words fail.
Music has a unique place in the human memory. Very often people can remember the words and tunes to songs when much else has been lost. Sing the songs that your family associates with Thanksgiving, or music that is special to your loved one. If you are not up for singing yourself, find some CDs that you can listen to together.
Materials for activities.
It can take a while for that bird to cook, so have some things around that people can do together, such as:
- Card games such as Uno, Go Fish, Old Maid
- Easy jig saw puzzles (avoid childish themes)
- Things that can be sorted and admired and put into different containers, such as colored beads, silk flowers in different colors, screws, or cards
Watch a movie or TV program together
There are programs on television that people can watch together and share, such as parades, football games and the National Dog Show. Pull up some chairs and enjoy together.
Keep comfort in mind
If you are taking your loved one to another home, bring an extra sweater or a throw blanket just in case. Many elderly people are cold at temperatures that others consider comfortable.
Have a quiet room available
If you are making a day long celebration, have a quiet room available for a nap. All the activity and people can be tiring. If you think that your loved one has had enough for the day, don’t be afraid to leave early.
Consider celebrating at the assisted living or nursing home
If you don’t think that your loved one is able to comfortably participate in a Thanksgiving gathering with family, consider a quiet celebration in place. It may be that the family will have a better visit if the loved one remains in a familiar setting and family members come to visit. Spread out the visits so that your loved one is not overwhelmed with too many people all at once.
Decisions about providing care for an aging loved one are seldom easy. Various options exist in terms of elder care, including assisted living facilities and nursing homes. Seniors who are self-sufficient may be able to stay in a retirement community or active living building. In other instances, the best course of action is to have an elderly relative move in with family members.
According to Dr. Nancy Snyderman, who recently took on the role of caregiver to her own senior parents, 44 million American adults are caring for an older friend or family member. MetLife estimates that nearly 10 million adult children over age 50 now care for an aging parent. Care is defined as helping with feeding, bathing, dressing, and other personal care needs, going beyond driving a parent to appointments or helping them with financial matters.
Taking care of a senior requires a profound commitment and can completely disrupt a person’s life, both at home and at work. Men and women faced with caring for an aging parent at home may want to employ several strategies to make that transition go as smoothly as possible.Talk to the senior about your options. Making decisions together will be best for everyone involved. It can be challenging to discuss mortality and whether or not elderly parents or relatives can properly care for themselves. Broach the subject well in advance of making any plans so you will have some understanding of how the senior feels about the situation and what would make him or her most comfortable. Your parents may already have a plan in place.
Establish a caregiving budget. Caring for the elderly is expensive. MetLife says working Americans lose an estimated $3 trillion in lifetime wages, with average losses of $324,044 for women and $283,716 for men, taking time to provide care. Before a senior can be welcomed into your home, you must first determine which financial changes must be made to accommodate this person. Will a parent be contributing to a portion of the expenses or paying rent? Is it feasible for you to reduce hours at work to care for this individual? Once you have the numbers in black and white, you can better assess your situation.
Make physical modifications. Your home may not be equipped and safe for an elderly resident. You may need to add a private space for your parent or relative, and install night lights, secured railings, grab bars, ramps, a shower chair, and anti-slip surfaces. You may need to build an extension on the home or completely renovate what you have to make the space safe.
Aim for stability. Moving and changing routines can be especially stressful for seniors who are used to their own schedules and habits. Transfer furniture and mementos from their home into yours. Encourage seniors to maintain a social schedule and invite friends over. Try to help your loved one keep his or her doctors and, if possible, take them to shop where they have shopped in the past. These opportunities will make the transition to a new home easier.
Discuss finances. It’s essential to understand your loved one’s financial situation. Make lists of his or her assets and any insurance policies in his or her name. Understand which health procedures are covered and discuss ways to finance any procedures or medications that are not covered by your loved one’s policy. Ask if your loved one wants you to manage his or her finances or when he or she may feel this is necessary. Professional help, such as an attorney, financial planner or a geriatric care manager, can make it easier to understand the legalities and subtleties of these arrangements.
Make time for yourself. Caring for the elderly can seem like a full-time job, and it’s easy to forget yourself in the process. Make time for yourself so your own health is not sacrificed while you tend to your loved one.
If you are a caregiver and need advice regarding care options don't hesitate to contact Elder At Home at 401-475-7705
The most common types of dementia, such as Alzheimer’s disease, are progressive – meaning that the ability to think clearly, reason and remember things gets worse over time. Dementia can also cause changes in personality and mood. A person with early dementia may have short lapses in thinking and memory at first but if the dementia progresses and worsens, the thinking and memory difficulties can eventually become severe enough so that a person with dementia may have significant difficulties caring for him or herself.
Family members and caregivers may face difficult challenges if their loved ones’ dementia becomes more severe. Some symptoms of dementia that may be difficult for patients and caregivers to manage may include inappropriate behavior, loss of communication skills, disorientation to time and place, delusions, hallucinations, paranoia, and agitation. With this in mind, it is important for people with early dementia (who may become worse with time) to plan for their future as early as possible, while they may still be able to more actively participate in the process.
Staying One Step Ahead
As changes in one’s health arise, having a plan in place can help people with dementia and their caregivers feel more confident that they are carrying out expressed desires and wishes. Even with milder cognitive difficulties, some people with dementia can still make their wishes known, even if not explicitly stated. If wishes cannot be explicitly stated or are unclear because of dementia, families and caregivers may still work together with professionals and others in their community to plan based on their knowledge of the way the person with dementia has lived his/her life and the choices made along the way.
An important first step is to determine the type of dementia that your loved one might have. There are many conditions or diseases that can cause dementia so knowing this may help understand whether or not it will progress over time, and if so, what one might expect over time. Speak with a doctor to get a better sense of the following:
- Is there anything that can be done to manage the specific type of dementia?
- Will the dementia progress? If yes, what can be anticipated?
- What might life with progressive dementia look like tomorrow, in 1 year, 5 years, or 10 years?
With dementia, there are some key plans to make and while some eventualities may be anticipated, others may not. Sitting down with loved ones, a healthcare team, and others who may be available to provide support to discuss the future and each person’s role in caregiving and/or decision making is important. There are legal, financial, social, and care-team decisions that can be made now. Some good goals are to:
- Include your loved one in making decisions, if possible. Understand that people with dementia may be able to participate in their care and make some decisions depending on how advanced their disease is and their understanding of the specific decision
- Get support with planning. For example, you may want to see an attorney to write out a will, or talk to a social worker about services that might be needed down the road
- Make your loved one’s wishes about the future known to family, friends and caretakers
- Put plans in place in case your loved becomes unable to continue making or participating in decisions for him or herself (e.g. living will)
- Have your loved one choose a healthcare agent (a person who can make certain healthcare decisions if he or she can no longer make those decisions for him/herself) and communicate that decision to the family and healthcare team
Balancing Independence and Safety
Being prepared and staying one step ahead doesn’t mean that freedom is being taken away from your loved one. It is to work toward ensuring that they can be as independent and safe as possible and in keeping with their preferences and beliefs. Getting everyone comfortable with making difficult decisions now will make things go more smoothly in the future. Some questions that can be asked ahead of time include:
- What measures should be used to determine how to safeguard the house? (e.g., removing knobs from the stove, putting bells on the exit door in case the person begins to wander)
- When might it be time to stop driving? Limit cooking? To get help with daily activities?
- When might someone need to come and help for a few mornings per week? During the day? Or at night?
- To avoid isolation, when might social programs, group support, or other help be good to get started?
- When might everyone know that it may be time to move from in-home help to an assisted living facility or nursing home?
- What advanced care plans have been made?
The goal of planning ahead is to avoid the added stress and difficulty of decision-making without enough time or preparation, or ending up in “crisis mode.” There is plenty of help available for future planning. Local organizations and online resources can help you work through many issues ahead of time.