THE PRACTICAL CAREGIVER’S RULES FOR HAPPY HOLIDAYS: How to Survive the Big Season of Celebrations without Completely Losing Your Mind
By Sara M. Barton, The Practical Caregiver
Published by Sara M. Barton, The Practical Caregiver, at Smashwords
Copyright Sara M. Barton 2011
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you are reading this book and did not purchase it, or it was not purchased for your use only, please return to Smashwords and purchase your own copy. Thank you for respecting the hard work of this author.
For Clarie – There was nothing my mother loved more than a good holiday party. Any excuse for getting together worked for her. She loved the sound of laughter, the sight of all the twinkling lights, the chance to celebrate the season. And for Chuck – he loved her, took care of her, and misses her still. They made so many good memories together.
I also want to thank some of the many people who were instrumental in inspiring me to share caregiver wisdom:
Jimmy -- Trusted advisor, compassionate champion; he always errs on the human side of life. He took good care of his mother (and father) through the years, weathered the storms, kept his sense of humor, and helped the world to remain Regina’s oyster.
For Anne – Experienced nurse and caregiver, wise counselor, true friend across the Atlantic – she has encouraged me to believe that caregivers really do want to do better. She still misses Alex. He was a lovely man.
For Janie – Caring confidante and kindred soul – we’ve supported each other through the crises, expounded on our philosophies of life, love, and laughter; despite the many miles that separate us, we found common bonds through sharing our experiences.
“I JUST CAN’T DO THIS ANY MORE!”
At your wit’s end, facing the big season of celebrations as a family caregiver? Need help figuring out how to balance your love of the holidays with your challenging caregiver schedule? Welcome to the Practical Caregiver’s Rules for Happy Caregiver Holidays!
If you’ve ever:
Wanted to hang up your caregiver tee shirt, instead of your Christmas stocking…
Thought about kicking that dreidel across the room …
Considered putting on leather gloves for Boxing Day…
Felt like giving Baby New Year a shove out the door…
Wanted to fill that red packet with a few choice words at Chinese New Year…
...you’re overworked and overwhelmed. You’ve got enough stress in your life. You need help organizing and managing the festivities around your duties as a family caregiver.
Whatever holidays you celebrate, being a caregiver shouldn’t ruin the fun of getting together with family and friends. Can you honestly say you’re willing to go without the pleasures of life? Should you miss out on all the good things? Absolutely not! Grab the reindeer by the horns, get your New Year’s Eve disco ball down from the attic, tame the dragon -- do whatever you have to do, but make the holidays work for you.
When you put people (even you -- you’re also a person!) ahead of the idea of holiday perfection, when it is less about the gifts and more about the love, you are celebrating the spirit of the season -- no matter whether you are celebrating Christmas, Hanukkah, Kwanzaa, Boxing Day, New Year’s Day, Chinese New Year, the Feast of the Epiphany, or the Winter Solstice.
Real joy starts in the human heart, not in a box wrapped and tied with a bow. It lives deep within and sometimes eludes us when we forget the real meaning of celebrating. Family caregivers often struggle under the strain of providing care, and the holidays can just feel like more work on top of work. “When will this madness end?” Sometimes it’s hard to remember what joy feels like, let alone find it. But it is always worth the effort. When you find real joy in your heart, you begin to understand how important it is to appreciate the good moments in life. Your holiday, like your life, may not be ideal. You may struggle to get through each day. But you have the power to make a difference in how you celebrate this season. Empower the gifts you give and receive to become sweeter because you actually feel the love. The most important thing you can do is to commit yourself to seeking and experiencing joy. Make that decision and then go for the gold. Tie up the ribbons! Turn on the twinkling lights! Take a deep breath. It’s time to celebrate!
RULE 1 -- IT’S OKAY TO BREAK THE RULES TO FIT YOUR SITUATION
Reject the guilt trip. Put aside the annual expectations, the “must do” and “have to do” things that place unbearable demands on your already-strained schedule. You need to create a plan for the holidays that will actually work without driving you bonkers. It’s about adapting to your circumstances and your time constraints. What is the current situation and how can you make it fun for everyone, even for you, using what you’ve got?
A lot of family caregivers box themselves into their old holiday lives and don’t realize how much things have changed since they started caring for their loved ones. As a caregiver, you now work more hours and that significantly impacts your life in unexpected ways. You have to balance your loved one’s needs with your own -- and yet, you can’t stop living your own life. This is especially true at the holidays.
The reality? You now have a lot less time for everything. That means having to make choices about how you will use the time you do have in more effective ways. Should you just accept your fate as Cinderella or Cinderfella, doomed to a life of drudgery and despair? Absolutely not! Take back the power! You’re in a position to make some important decisions. Are you willing to sacrifice the lesser things in life to get the big things right?
Choose what you’re going to put on your “to-do” list. Prioritize what matters to you and your loved one. Recognize you aren’t likely to have enough time to do it all -- you will have to make peace with what you can do and let go of the frustration for what you can’t do. Let’s start a new journey, to happier holidays!
RULE 2 -- CONTROL THE STRESS LEVEL OR IT CONTROLS YOU
Holidays can be emotionally challenging even when a loved one doesn’t need care. Families have expectations about how we should do celebrations. The bigger the crowd you face, the greater number of folks with their own views on how things should be done. Whether the question is to have lumps or no lumps in the mashed potatoes or what time to serve the feast, families will always have differing opinions. But when you have a loved one with a dependence on you for daily living assistance, the holidays can become even more complicated.
Why? If your loved one needs a caregiver, you need to provide care. That care should be determined by the physical factors impacting your loved one’s health. Is your loved one easily fatigued? Or emotionally fragile? Or overwhelmed by too much activity? These kinds of stresses can cause physical distress for someone with health issues. The trick is to reduce as much unnecessary stress as possible.
Stress can do funny things to people and a lot of people are stressed at this time of year. It can make us say or do dumb things. When our uncensored actions go unchecked, it can create some pretty powerful reactions in those around us. We are sometimes walking basket cases, wearing our raw emotions on our sleeves, giving voice to our anger, frustration, and sadness. The excitement of the season creates hopes and dreams. Kids might expect that big electronic gizmo or the chance to see that new blockbuster movie. Disappointment can lead to temper tantrums. Sometimes the same is true of adults, even if we don’t like to admit it. Maybe Bob forgot to buy those earrings for Ellen, even though she left him several reminders. Maybe Ralph was hoping the family was going to support his desire to watch the big football game. Maybe Sue thought Steve was going to propose. Maybe Harry just found out his company is laying people off. We all have emotional lives as children and adults, but we don’t always realize we’re letting go of self-control.
Are there usually moments of drama in your family gatherings? Do you have relatives who regularly experience emotional meltdowns or folks who like to argue, whether it’s sports teams, politics, or who gets the last piece of pie? You have to assess your loved one’s likely reaction to these stresses. If you think your loved one will be negatively affected, you’ll need to communicate with your relatives ahead of time. Be honest. Your loved one can’t handle a lot of emotional tension. If you’re like a lot of overworked, exhausted caregivers, neither can you. You need people to cooperate, to focus on putting your loved one’s physical needs ahead of personal desires for self-expression. You want the family to edit their own behavior. Directing them to create peace and joy is a way to say, “For these few hours, put it all aside and come together.” It puts people in the position of having to monitor their own attitudes and adjust them for the sake of someone with health limitations.
Let’s be honest about this -- as a caregiver, aren’t you constantly editing your own thoughts and feelings because you don’t want to add to your loved one’s misery? You bite your tongue to stop from snapping back. You step out of the room instead of showing your tears. You swallow your pride to do the right thing. If you can do this every day when you’re caring for your loved one, your family can do it for a couple of hours on the holiday.
Peace and joy -- isn’t that really the whole point of celebrating any holiday as a family? You put aside the things that make you different as individuals and you recognize what makes you a family. From past hurts to old grudges, from a need to hold center stage to that tussle for ”the good seat” at the dinner table, you’re asking people to step back, let it all go, put your loved one’s real needs first, and man- and woman-up. Tomorrow they can go back to shouting, bickering, kicking and screaming, and falling apart. If Aunt Martha wants to rant about her ungrateful kids at next year’s dinner table, so be it. If your brothers want to argue about the best football player in the league, they’ll have other chances. At this moment in time, this is officially declared a “No Stress Zone”.
If the gathering is at your home, you certainly have a say in the rules of the day. “It’s important that we all make an effort to get along and cooperate. We all love Nana and we understand that she is more fragile now that she’s ill. I know we can find positive ways to celebrate as a family.” Put the emphasis on the whole group working together to make this happen. You’re asking everyone to help keep the day calm, relaxed, and fun. And don’t forget to point out that it also makes it more pleasant for everyone else -- a win-win for everyone, not just Nana. When you set the ground rules, you’re strengthening the family as a whole. How can that be a bad thing? You’re not putting your loved one first -- you’re putting your loved one’s NEEDS first. Stress can create heart palpitations, tension headaches, and even anxiety.
Most folks are glad to do it. Why? Family celebrations are memory-makers. They create that warm glow in our hearts -- it’s what makes us smile when we look back on the good times together. How can you not feel the love when you’re making the day merry and bright?
RULE 3 -- IT’S OKAY TO MAKE ALTERNATE PLANS WHEN NECESSARY
If you think that people won’t be able to handle that request, you may have to make other arrangements, especially if you are not providing the meal. Sometimes relatives have very strong feelings about who does what, how it gets done, and what’s going to happen -- if the host refuses to accommodate your loved one’s special needs, or you think the family dynamics are too strong to manage, you may need to make alternate plans.
You may have to make alternate plans if your loved one is physically vulnerable. This is especially important when you’re caring for a cancer patient -- at certain times, a cancer patient’s immune system can be fragile, so it’s necessary to avoid crowds and exposure to germs, viruses, and bacterium. Your loved one may be very disappointed, but the risk to his or her health is very real and very serious.
Sometimes, the truth is your loved one just can’t handle all the stress of being in a crowd. Talk it out -- you may be surprised to find that your loved one recognizes he or she just doesn’t have the stamina for a big family gathering. Sometimes staying home and just having a quiet holiday can be a lot more comfortable for people who need care.
And don’t forget that you can invite visitors to come in manageable numbers -- sometimes the best thing for your loved one is the chance to connect in short, simple visits with family and friends. There’s no reason why Billy can’t bring his new girlfriend to meet Grandpa, especially if they just stay for a quick cup of coffee and some cake. If your sister and her family are going to be in town for the long weekend, they can pick up a take-out meal and come for dinner on another night. Get out the paper plates, the cups, and make it casual and uncomplicated. Be creative in solving these visiting dilemmas. Think outside the caregiver box. Remember, it’s okay to change the rules to fit your loved one’s situation!
Don’t have family around? Why not adopt your own? Very often you know friends and neighbors who are at lose ends, just like you. Invite them to stop by for a meal or even coffee and dessert. Keep it simple, light-hearted, and fun.
RULE 4 -- IT’S OKAY TO CHANGE YOUR DEFINITION OF A PERFECT HOLIDAY
It’s important for you to decide what goals you have as a family caregiver during the season of celebrations. What kind of experience do you want you and your loved one to share? Think about that for a little while. Picture what you want to do, how you want to spend the hours, what it feels like. Imagine what would work best for you.
Will you spin your wheels, trying to make everyone happy by doing it all “like the old days”, even though you’re too exhausted to enjoy it? Will you micro-manage everyone and keep dinner on schedule, even though Cousin Joe is late (as usual) and Aunt Pearl has to leave in an hour? Will you wind up sitting in the powder room, balling your eyes out because the carrots are burned, no one is cooperating, and your nerves are frayed? Is this what you want or do you want something else entirely?
Will it be about making your loved one as comfortable and active as possible or apologizing for the fact that your loved one’s need for care is spoiling the celebration? Will you savor those little moments, gazing upon the cheery decorations as they twinkle all around you, or will you waste time thinking about how much work it is to put them up? Will you give yourself the chance to appreciate your family and friends, instead of feeling like you’re disappointing them because you’re too tired to “do the holidays up right.” You have the power, Caregiver, to enjoy this holiday. Don’t hesitate. Don’t doubt. Don’t tell yourself you can’t change how the family does things. Take steps and make it happen. Be brave. Be determined. Be compassionate.
Maybe you feel abandoned by the family, stuck as the family caregiver. That’s a pretty common complaint. But being stuck is a state of mind. You put yourself there when you tell yourself you have no choices. Pull yourself out of that hole. Acknowledge that you have limited energy to do everything and if the family wants a holiday, the family has to work together to make it happen. You’re not a Super-Caregiver! You’re not able to leap tall wheelchairs in a single bound or fly through the air while carrying your loved one’s medical equipment. You’re one person and you need help to make the holiday a happy one.
Smart caregivers put human needs first. That means adjusting to and accepting your loved one’s physical, mental, and emotional needs, as well as your own. It’s all about making time for bonding and connecting. Do more than just make lemonade from the lemons life hands you. Make holiday lemonade. Find the right recipe for your situation -- balance the tartness of the need for care with the sweetness of finding the joy in the season. It’s not about pretending to be happy. It’s about finding that there are some things that really do make you happy. It’s about digging deep inside and knowing that the care you give really does make your loved one’s life better.
RULE 5 -- GO “DICKENS” TO SEE THE POSSIBILITIES
In your head, take a few moments to “go Dickens”. If you were Scrooge and you were not providing care to your loved one, what would his or her life be like? Lonelier? Sadder? More miserable? Now see yourself as the caregiver you currently are. What will the holiday will be like for you and your loved one if you let things happen as they normally do at the family gatherings? What will the effect be on you and your loved one? Is this a satisfying image? Move forward, into the future. Armed with new ideas and understanding, can you see the family gathering transformed? Can you imagine more love, more laughter, more joy? If so, you’re ready to take action. Holiday magic is all about believing. It’s about feeling the joy in one’s heart, in knowing that life is worth living. When you recapture that, even with all the challenges you face, you will gain strength from your efforts. You are building memories that will keep you warm for years to come.
Why settle for being an ordinary caregiver, especially at the holidays? Look at caregiving as an opportunity to improve your relationship, a chance to strengthen the family bonds. See it as a chance to acquire new skills -- a good caregiver learns to manage and organize the care provided. Don’t say to yourself, “It’s all downhill from here.” Unless you’re a dedicated skier, that’s not a good thing. Look for the opportunities that sweeten the hand life has dealt you and your loved one. Life goes on, but how you choose to embrace the responsibilities will make all the difference. It’s more challenging, but imagine how good it will feel to succeed!
RULE 6 -- IT’S OKAY TO TEMPORARILY CHANGE FAMILY TRADITIONS
Give yourself permission to change how you do the holidays to accommodate your loved one’s needs and your own. In the past, you probably had time to plan, shop, decorate, and entertain during the holidays. If you’re like a lot of people, you probably even looked forward to it. But at this moment in time, you have your hands full taking care of your loved one. You are short on time, energy, and possibly even resources.
Take it one celebration at a time. Tell yourself and your family that the changes are just for this particular holiday. You can assess and reassess your situation for each new event. By being flexible about how you handle the holidays and focusing on the reality of the care that is needed, you give yourself the chance to make adjustments that fit your loved one’s real needs.
When you take this approach, you may find that there are a lot of times you can follow family traditions with a few minor adjustments and some times when it’s difficult to do so. It’s a lot easier for people to accept a temporary change than to accept a permanent change.
You can resume your favorite traditions down the road -- when you have more time, when life is more stable, when your burden is lighter. It will be easy to go back to the old way of doing things when you don’t have so many obstacles in the way. But at this moment in time, life is too hectic, too crazy to do things the way you and the family have always done them.
In what ways can you change family traditions while keeping it all positive? Sometimes you might just tweak things here and there -- adjust the time you do dinner or the amount of work you put into the celebration. Or you might change the location. Maybe instead of you hosting the party, you and your loved one go to Cousin Tina’s for dinner, or even enjoy restaurant meal, with no house cleaning to do, no pots and pans to wash, and the ability to leave when your loved one has had enough. Giving yourself the flexibility to change things means you can make adjustments that make sense.
RULE 7 -- NOBODY LIKES TO FEEL LIKE A BURDEN
Repeat after me: Nobody likes to feel like a burden. Nobody likes to feel like a burden. Nobody likes to feel like a burden.
Did you notice what I didn’t say? I didn’t say nobody likes to BE a burden, although no sane person ever chooses to be a burden. There’s a huge difference between feeling like a burden and actually being a burden. The reality is family caregivers are often burdened with care responsibilities. No matter how much you love someone, the physical challenges of providing care can take their toll on you. Smart caregivers understand that and work to find appropriate resources to mitigate the burden of providing care. The more you can use family and friends, even hired help and volunteers when appropriate, as part of a managed care plan, the better a caregiver you become.
What’s the biggest secret to caregiving? The less your loved one feels like a burden, the less guilt he or she will experience. Want to improve the relationship you have? Empower your loved one -- the more independent you help him or her to be, the more cooperative your relationship will be and the better the balance between needing care and needing to provide care. Loved ones who are active and participate in their own care plans are more invested in making things work. They are more hopeful because they feel involved in life.
That’s true at the holidays, too. Get your loved one to help you make decisions whenever possible. Even someone who has limited mobility and can’t do a lot of the physical work can often offer good ideas and suggestions. Put the joy in the season and feel it in your heart. Help your loved one, too -- the more fun your loved one has at the holidays, the easier your job as a caregiver will be. Many people with diseases and disorders are stuck on the sidelines, watching everyone else having fun in the big game of life. When your loved one is a part of the action, he or she feels more like everyone else -- the wheelchair fades away, the shaking hands aren’t so bothersome, and fears about the future seem to disappear. You
create balance in your relationship when you help your loved one to share opinions, beliefs, suggestions, ideas, thoughts, and even stories. For that moment in time, your loved one has something of value to contribute.
RULE 8 -- ENCOURAGE AND ENABLE
Does this come easily? Not always. People who need care can often be frustrated by their inabilities. You may have to work at drawing out the positive from your loved one. Focus on finding it. Direct your conversation in positive ways. Reward your loved one’s efforts when he or she says something meaningful. Consider asking questions about holidays past. “What was your favorite thing to do when you were a child?” is a good conversation starter. “What was it like at your house?” is another door opening at the Memory Bank. Very often, you’ll get your loved one to share a real treasure, about family, friends, childhood, or even life long ago. If you assume you know everything there is to know about him or her, you shut that door to communication. You could be losing some valuable wisdom or special insight in the process, especially if your loved one has information on family history that you need to know.
Your loved one can also provide you with information on what matters to him or her on a personal level. As a caregiver, the more you understand how your loved one sees his or her world, the easier it is to avoid unnecessary confrontations and skirmishes. Sometimes it can feel like personal failure or weakness for a loved one to need a caregiver, and that can trigger negative emotions. Caregivers sometimes feel unappreciated when it looks like their best efforts are rejected. It’s not always about you. Sometimes it’s the frustration and disappointment of dependence talking.
People who need care can feel they have no choices in life. A smart caregiver understands that choices are what make us feel free. Fun is the icing on the cake, the reason why we want dessert. What can your loved one still do?
-- Send holiday greetings, cards and emails
-- Look for special recipes in magazines or search the family recipe box for favorites
-- Shop by catalog and Internet for gifts for family and friends
-- Make simple Christmas or Hanukkah ornaments
-- Frost cookies with tube icing and decorations
Want a simple Christmas decoration that’s fun to do, doesn’t require an engineer to put it together, and can be done on a tray table in the main care room? With some graham crackers, royal frosting, gum drops and other candies, you and your loved one can make some adorable little “gingerbread” houses. You will find all kinds of inspiration on the Internet.
What’s the beauty of this project? You can spend as little or as much time as you want. Each one can be done differently. Want to go simple? Want to go ornate? Candy-covered or simply iced? It’s all up to you and your loved one. This little cookie house is just the right size for a side table or even on the mantle. Don’t have the time to gather all the ingredients? You can often find pre-baked gingerbread kits in stores or even molds to make your own.
Your loved one may not feel up to making a little graham cracker house, but what’s to stop you from doing it? It’s even nicer when you can do it in the main care room, so your loved one can watch. Turn on a favorite TV show, put on a movie, play some music and spend some time being a companion as you work.
RULE 9 -- COMFORT COUNTS
Focus on making your loved one feel as comfortable as possible. There’s a benefit to this -- it can make your life easier. When your loved one sees you as committed to improving the quality of his or her life, you’re taking care of the whole person. It’s like a big, warm bear hug -- it envelopes your loved one, creates a sense of safety and security, and sends the message that life doesn’t have to be lonely. Very often, people who need care can be afraid -- “What will happen to me next? How horrible will it be?” These fears can drive a lot of “bad” behavior. Your confidence and comfort measures can reassure a loved one. That fosters cooperation, encouraging your loved one to trust you, to work with you, and even to make suggestions on how he or she wants to do things.
Sit down and communicate with your loved one about what you both want to get out of the holiday. Be honest, but kind. You may have to say there are some things you just can’t do. By offering choices, your loved one still has a say in what happens. It’s about identifying priorities.
It’s important to understand what your loved one’s physical needs are and how they will affect the holiday plans. What are those needs? For some people with limited mobility or energy, it’s exhausting to have to walk long distances or to spend hours at a party.
Always plan activities for the hours that your loved one is “up” and has the most energy. That gives him or her the best opportunity to socialize. Also factor in some rest time, to accommodate your loved one’s “down” times. Even if you go out to visit family and friends, it’s easy to do this. A quiet room and a comfortable chair can help a loved one take a little break when he or she is exhausted. Sometimes it’s possible for your loved one to lay down for half an hour or more, while the party goes on in another room. Just that little break can often make a big difference. As the family caregiver, it’s good for you to also get out and socialize, especially if you know your loved one is comfortable while resting.
You also need to understand other factors that can have a negative impact and put a damper on the celebrations. How your loved one views his or her current situation or limitations can affect the emotional outlook at the holidays. The greater the handicap or health challenges, the greater the impact on how you celebrate. Depression is a common experience for people who are seriously challenged by disease or disorder. The hardest challenge is a loss of hope.
When someone who needs care feels hopeless about life, it can create disinterest in activities. “I don’t feel like doing anything.” Like dominoes knocking into each other, the celebration can fall apart when your loved one can’t handle it. It’s important to understand what your loved one is feeling -- is it depression or is there a new physical issue cropping up?
Some health issues come upon us slowly, and by the time we recognize there are problems, it’s harder to heal. If you notice a change in your loved one’s personality, consider the possibility that it’s actually the result of not feeling well. Take note of the symptoms and encourage your loved one to have a physical exam. Heart disease often creates fatigue, as does COPD. Arthritis can be painful, limiting range of motion. Chronic pain is exhausting and frustrating, often affecting mood. A number of illnesses and disorders can make you feel dizzy or light-headed. Even medication can create problems. Sometimes these problems have very simple solutions. Your loved one’s physician may change the time to take a pill or prescribe a smaller or larger dose. It’s always important to have a medical consultation when you notice symptom changes.
You may not be able to do everything you and your loved one want done for the holiday, but you can do those activities that make sense. Decide what you and your loved one are capable of realistically doing. What’s your normal holiday routine? How will that routine be affected by your loved one’s new needs for care?
RULE 10 -- ADMIT YOU ONLY HAVE TWO HANDS AND 24 HOURS IN A DAY
Give yourself a real break by understanding that you’re only human. You have to appreciate what you can and can’t realistically do. There are only 24 hours in a day -- how many of these are you currently using to provide care and to maintain your own life? You’re already short on time if...
-- You’re providing more than ten hours of care a week and working full-time.
-- You’re providing more than twenty hours of care a week and working part-time.
-- You’re always on call and providing care full-time.
--You’re providing end-of-life care for your loved one.
It’s important to remember that the holidays create more work on top of the work you’re already doing. How can you factor that extra responsibility into your already hectic schedule?
Think about it. Let it roll around your head for a few minutes. How many hours do you work? How many hours do you provide care to your loved one? How many hours do you give yourself to relax and de-stress? How many hours can you reasonably put towards the holiday?
This is not an effort to sabotage your holiday. This is an effort to make your holiday work. This is about making sure you survive it. When you plan your activities, you actually have to imagine yourself doing them. What will the experience be like for you? How will you feel if you take on too much? How will you feel if you don’t have the time and the energy to get it all done?
As a caregiver, it’s important for you to feel like a success. If your plan is too ambitious, you will feel the pressure. You will rush to get it all done. You may even neglect your caregiving. Don’t. Step back. Examine your plan. Assess the actual time you have to get it done. Recognize that you have real limitations on your time. It’s not a failure on your part that you can’t do everything you want to do. It’s the reality of being a family caregiver.
RULE 11 -- PICK WHAT MATTERS MOST
Sometimes it’s hard to figure out a starting point. It’s helpful to pick what matters most. You have options, and how you proceed is up to you.
If you only have 1-2 hours available to decorate: Choose the most important activity, put your energy into the effort, and make it fantastic -- OR -- Choose a couple of activities that you know you can manage easily and scale them back to fit the time you have to work on them.
Decorate one room: Make it the main care room, where your loved one spends the most time. Not only will he or she be surrounded by the cheerful signs of the season, you’ll be seeing them, too. Why not go a little overboard? It’s the holidays, after all. Just remember to keep electrical cords and other obstacles out of the way.
If you’re using a live Christmas tree, make it fit the space and be sure it’s not a health or fire hazard. If your loved one has an allergy, consider using an artificial tree. Make sure that you water your cut live tree, because a dry tree is dangerous, or use a potted tree as an alternative.
If you’re using real candles, be extra vigilant -- having a home fire is extremely dangerous when your loved one is incapacitated. Why not err on the side of caution? Light the menorah or your favorite scented Christmas candle, even use your favorite lantern, but don’t leave the candles burning unattended. Whenever possible, substitute a safer alternative. Can you use battery-operated candles? Can you use LED lights instead? You can let the joy keep on going for hours if you don’t need to worry about a fire. Many loved ones are unsteady on their feet and they often wear their pajamas and robes at home. You don’t want a disaster on your hands because of an open flame.
If your loved one uses medical equipment that requires electricity, make sure that holiday lights you use do not overload the outlets. Short on electrical outlets? Why not use LED lights that use less power or battery-operated light sets? You don’t want to risk blowing a circuit and having to find your way to the circuit box in the dark. Where’s the fun in that?
If you have 3-4 hours available to decorate: Choose a couple of activities that are important, throw yourself into the preparations, and make them shine -- OR -- Modify your normal holiday routine to be manageable and pleasant. Decorate the main care room and the area where guests enter the house: These are the two places that will be seen and appreciated by the most people.
If you still have energy and an outdoor space, feel free to do a small outdoor display. Hang a wreath on the front door. Drape some lights on a bush -- even better if your loved one can see them out the window.
Remember that if you have to plug in outdoor lights every night, it will be extra work for you because you’ll also have to turn them off. Consider using a timer. Want something even easier? Why just add a couple of solar lights? You don’t have to worry about turning them on or off and installation is a breeze. These days, you can find all kinds of fun solar lighting, from candy canes to snowflakes.
When you’re tempted to go for it, before you let yourself go crazy and drag out every box of ornaments from the attic, consider this. What goes up must come down. That means you will have to remove and repack every decoration after the holiday -- more work for you. Will you have the time and energy to do this?
RULE 12 -- BREAK DOWN THE DECORATING DILEMMA TO GET IT DONE
The secret to caregiver holiday decorating is to find the time when you’re already short on time. One of the toughest challenges is finding an hour to do something. If you’re already feeling the stress, don’t look for that hour. Find fifteen minutes. That’s enough time to get something done. Start to look for those fifteen minute segments throughout your day and take advantage when you have one. But don’t forget your own “coffee break” -- give yourself a few minutes to just kick back and relax.
First Step -- Start by getting down the decorations you want to use. If you’re like most people, you probably have several boxes. Don’t rush the process. Why not make that an activity you do with your loved one? Pick a quiet time and sort through the boxes. You may find your loved one has favorite ornaments he or she wants displayed. Choose some of your own favorites, too. Put them aside until you’re ready to decorate and put the boxes away. Clutter can make a caregiver feel overwhelmed.
Second Step -- Where should these decorations go? You want them to be visible to you, your loved one, and visitors. Figure out the best place to put them. Don’t just assume you should do things the way the family always does it. You’re trying to bring as much cheer into the home as possible, with as little effort as you can make. That means thinking outside the normal holiday box. Get creative. Talk it over with your loved one. Be respectful and make suggestions.
If you disagree, consider doing it your loved one’s way. Why? You have more choices in your life, even if you can’t always have what you want. You have more freedom, even if your life is complicated. Your body still works well enough for you to be independent, but your loved one struggles. People who need care have to depend on the people around them for most things. They don’t have a choice about needing care. When you relinquish control of the holiday decorating decisions, you are empowering your loved one to be in charge of something.
For a person with limited personal power, that’s often a very important thing.
We’ve all seen the stereotypical “bossy” senior citizen in the media, even in real life -- if you know a backseat driver, you know what it’s like to get directions on how to drive “the right way”. It’s easy to dismiss someone who tries to take charge as a “control freak”, especially when there is a physical need for care and you’re stuck giving it. Recognize this for what it is -- an effort to still be a vital part of life. When you empower someone by enabling her or him to participate by helping make the decisions, you become the wind beneath those wings. You’re less likely to butt heads when you’re both traveling in the same direction.
Third Step -- Get it done. You know now what you want to do and where you want to do it. But remember this -- it’s okay to do it in stages. Decorating the Christmas tree? Why not start with the lights? Get them just the way you like. Come back later for the balls, when you have a few minutes. Later still, you can add the special ornaments.
Remember -- Rome wasn’t built in a day! It’s easier to find fifteen minutes here and there than it is to find an hour or two. When you break down the process into small segments of time, you can squeeze more in without it feeling like such a chore.
RULE 13 -- FEED THE BODY AND THE SOUL
Stuck on your holiday meal? Trying to figure out how you’re going to get it done? First thing to do is decide whether you’re going to host the celebration, go to a restaurant, or dine at your sister’s place. What makes the most sense, given your loved one’s situation?
If you’re hosting the party, you have options. You can make the food yourself, ask people to pitch in and bring something, or even just order up a take-out feast. Or you can even make some of the food yourself and fill in with other items from the other guests or even from a store.
If you have relatives who can’t cook, don’t let that stop you from asking them to contribute to the festivities. A nice bottle of wine, soft drinks, baked goods, a fruit or cheese platter, even a platter of cocktail shrimp can be bought at the local marketplace, and there’s no cooking involved. Whether you need buns or dessert to complete the meal, if you suspend the traditions you normally follow in favor of convenience, you can still have tasty food. Remember, you can always resume family traditions when your life is not so hectic.
Be adventurous when it comes to food. Go for bold and be brave. Treat the meal like it’s the next great thing. If you feel guilty because you’re not doing the normal holiday meal, the food won’t taste as good, the conversation won’t be as congenial, and probably you will be tense. Have something special to look forward to in the meal, whether it’s Aunt Blanche’s corn muffins or your brother’s choice of wine. One of the nicest treats for a caregiver celebration? Pick a dessert you really love from your favorite bakery and splurge. That way, the meal doesn’t feel like a let-down -- it feels like a pick-me-up!
If you’re not up to hosting the party, be honest. There are still options. If your loved one has the energy to go out, the family can meet you at a restaurant or someone else can host the party. That means you don’t have the extra work of cleaning up, setting the table, providing the food, doing the clean-up, and then the clean-up from the clean-up (there are always dishes to be unloaded from the dishwasher, garbage to be bagged, and tablecloth and napkins to be laundered, aren’t there?) Is this starting to sound like a good idea?
A restaurant meal means you and your loved one have the option of leaving whenever his or her energy starts to fail. You know you’ll probably be there an hour and a half or so.
A meal at your mother-in-law’s home means you’re likely to be there longer. People tend to take their time in a home setting. There’s no rush. You might be there two or three hours -- a lot goes on between the appetizers and dessert.
Do you have other options? Absolutely. If your loved one is frail and easily fatigued, or unable to handle the effort to travel, consider doing a very small, very intimate meal, with just a couple of other guests. Pick the right people, folks who love you and your loved one and understand your situation. Don’t be afraid to toss tradition out the window -- make foods that are very simple or can be made ahead. Or do a take-out meal. Ask Bob and Linda to pick it up on the way. Getting together at the holidays is not just about the food, it’s about the company we keep. Surrounded by those we love, who love us -- what could be better?
Want a tip for a super-easy, super-quick caregiver meal? Buy a roasted chicken from the grocery store. Make a box of “quick” stuffing mix and put it in the bottom of a casserole dish. Slice the roasted chicken and layer it on top of the stuffing. Pour a can of good ready-made gravy on the top. Cover and bake it at 350 degrees for about half an hour. Pick whatever side dishes you like -- mashed potatoes, corn, cranberry sauce. You and your guests will enjoy the aroma of that chicken as it reheats. The gravy keeps everything moist and delicious.
If you don’t have the time to make everything from scratch this year, remind yourself you will have other years to get back to all the favorite traditions. You’re trying to get through this holiday by using simple fixes to conserve the energy you have. That doesn’t make you a failure. The more focused you are, the better you will be able to keep your loved one as safe and healthy as possible.
Is your loved one affected by cooking aromas in a negative way? Or uninterested in eating? Certain diseases and disorders can create problems with food. (Cancer patients sometimes struggle with eating.) You’re going to have to take that into consideration when you make decisions about the holiday meal. In this case, it may work better to keep the celebration low-key and serve a meal that doesn’t overwhelm the senses. Instead of having a big crowd for dinner, you might want to have a “dessert party”. Invite people to come after dinner. Serve coffee and cakes, pies, even cookies and ice cream. Not a baker? Why not pick up different choices from a good bakery? And encourage others to share in the sweets feast. Nothing wrong with Carrie bringing her New York-style cheesecake and your brother-in-law bringing cream puffs to share.
Why desserts? It’s still festive, but there aren’t as many aromas to turn off your loved one’s appetite. In fact, it’s possible he or she will be interested in nibbling on the goodies. And there’s not a lot of fussing when you’re having a dessert party. Make it a buffet, with cheery paper plates, napkins, and cups, a few holiday decorations, and some holiday music playing softly in the background. If you have a thermal carafe or two, make coffee ahead of time. Fill the thermal carafes with hot water first -- let them sit for a few minutes, to get the inside of each carafe warm. Dump the water, add the coffee, and put the top on. Voila! The coffee stays hot until the guests drink it. You can even get the coffeemaker prepped for the next pot.
That’s the trick to surviving being a caregiver, friends -- the more you can organize in sensible little ways, the easier it will be to keep control over your time and the effort you must make to get a job done successfully. Be smart. Focus on what is most important to you -- having fun! Ask yourself, “What can I do without? What do I have to have?” Why shouldn’t you have your cake and a few minutes to enjoy it?
Sometimes well-meaning people try to insist that loved ones eat. We get nervous if a loved one has lost a lot of weight. Illness can have a serious impact on the human body in very powerful ways, and the loss of appetite can be caused by a number of factors, including depression. This is a subject best addressed by the medical team, NOT the family. When you work with the doctors, nurses, and nutritionist, you will get hints, tips, and suggestions to use in feeding your loved one. If you see someone chide your loved one for not eating, you’re going to have to step in and redirect that well-meaning advisor to share the wisdom with people who can actually use it. Let Aunt Martha tell little Jasmine that her eyes will stay like that permanently if she keeps crossing them. Let Cousin Bob tell Jake that he needs to eat more protein if he wants to make next year’s hockey team. Your loved one is being cared for by medical experts and you’re following the instructions they gave you. The subject is not up for discussion.
RULE 14 -- IT’S THE THOUGHT AND THE TIME THAT COUNT
Gift-giving can be a struggle for busy family caregivers. When will you find time and energy to shop, on top of all the other duties you have? And what about your loved one? Does he or she also need to give gifts? If you’re one of those people who frowns upon handing out gift cards, checks, or cash for gifts, you may find yourself feeling very guilty that you are stuck on how to handle holiday gifts.
That’s why it’s important for you to remember it’s the thought AND the time that count. Again, tell yourself you will resume your normal holiday routine when you’re not so busy as a caregiver. Take it easy on yourself. Be sensible. A gift card, check, or cash is acceptable when your hands are so full with caregiver duties.
An alternative to shopping is to partner up with someone you can trust. Ask if you can “share” a gift by chipping in. You get the shopping power of someone already planning to buy, and all you have to do is pay your fair portion of the cost. This is also a nice opportunity for your loved one to participate in gift-giving. Consider it a way for a small group to give a “special” gift, without bringing attention to your loved one’s handicap or limitations. Whether it’s a tricycle for Little Sophie or a new computer for Big Spike, chipping in for a bigger gift can be a good thing. Talk to family and see if you can work it out. Little Sophie and Big Spike will remember your generosity for years to come. Who knows -- you might start a new family tradition!
RULE 15 -- DUMP THE DOLDRUMS IN FAVOR OF FUN
Want to avoid the holiday blues? If your loved one is able and the weather cooperates, why not plan simple little outings? How about a drive to see the lights and decorations? How about holiday play or concert in your community? If your loved one has enough mobility and physical energy, a holiday adventure can be uplifting.
Even if you can’t go out, you can do something special at home -- watch famous classics like “A Christmas Carol”, “Miracle on 34th Street”, “Lights: The Miracle of Chanukah”, even “When Harry Met Sally”. Curl up on the sofa, get comfy and cozy, and enjoy the show. You can even read a classic story like “A Christmas Carol” over several nights. Put on some music or watch the New Year celebrations around the world. Get some silly hats and noisemakers, and the activity becomes an event. Make an effort to enjoy the season and you’re more likely to find something wonderful to share.
RULE 16 -- DON’T FORGET TO CHECK THE WEATHER, INSIDE AND OUT
What could be more upsetting than plans cancelled by a bad storm, especially if it changes how you celebrate a holiday? Whether it’s a family dinner or a theatrical production, it’s hard on your loved one if you have to say the party’s over before it’s even begun. Expect that you run a risk of having to cancel plans at some point in time, whether it’s because of what’s going on inside or outside.
Have some idea of what criteria you will use to decide that you have to cancel. If your loved one is handicapped, how will the weather affect your plans? Icy sidewalks, thunderstorms, high winds, blizzard conditions -- whatever you determine will affect your ability to safely transport your loved one, that’s going to the deciding factor.
During the big season of celebration, there are often health issues that cause genuine concern. Is the flu running rampant through your town? Are your fellow party-goers passing around the latest virus? Very often you’ll hear people say, “It’s just a cold!”, as if that means it’s harmless. Imagine someone with a serious lung condition like COPD -- if you can’t breathe on a good day, what’s it like on a bad day, when your body is fighting the added burden of a cold? What’s it like for a heart patient, already weakened by disease, short of breath, and needing supplemental oxygen, to come down with the flu? For healthy people, these situations are rarely life-threatening. For people who need care, it can actually be dangerous.
Want to temper the inevitable disappointment that results from cancelled plans? Understand that the holidays bring built-in expectations -- we anticipate the joy of celebrating. Losing out on a holiday party can be tough to swallow, especially for people who have progressive illnesses or disorders. There’s a fear that there won’t be another chance. Can you reschedule the event? Can you do it another day, even if it’s not as elaborate a celebration? Don’t let one day ruin the holiday. Be flexible and make new plans. Convince your loved one that you’re extending the holiday, not cancelling it. More to celebrate!
Think about other activities you can do at home on short notice. You can’t make the snow disappear, but neither should the fun. You’re telling your loved one that this is just a little glitch. Pick up a deck of cards and play some gin rummy together. Get out that Scrabble board and challenge your loved one to a game. Turn on a classic film, make some hot cocoa, and watch it together. Pull out the family photo albums and remember some good times. However you choose to keep your loved one occupied when an event is cancelled, make sure it’s pleasurable to both of you. Take a bummer of a situation and turn it into a morale booster!
RULE 17 -- PUT SAFETY FIRST
What to maximize your chances for a happier, healthier holiday? Get a flu shot (and consider a pneumonia shot if it’s appropriate). You don’t want to risk becoming ill -- how will you take care of your loved one if you’re unable to get out of bed? If you think you’re exhausted now, consider what you’ll feel like when you’re trying to keep up after a bout of the flu. You are more likely expose your loved one if you don’t protect yourself. Every time you go out in public, you’re at risk of bringing home a virus. It’s just common sense for a stressed, overworked, exhausted caregiver to seek protection wherever it is to be found.
You have options for free or low-cost vaccinations if you don’t have time to get to your physician’s office or local walk-in clinic. Many pharmacies, health departments, health fairs and visiting nurse associations now offer vaccine clinics.
The better you care for yourself, in washing hands regularly and keeping your stress level down, the healthier you will be. This helps keep your loved one safer, too. Have hand sanitizer handy for when visitors come. Make sure you have soap in the powder room and encourage hand washing. It can cut down on the potential risk to your loved one, especially if he or she has a compromised immune system. Many cancer patients go through periods, especially during chemo treatment, when they are particularly vulnerable.
Do you take your loved one shopping? Is he or she handicapped? It’s important for you to be vigilant in maintaining security. People with physical handicaps and limitations can be extremely vulnerable in crowds. Better to exercise caution than to have your loved one be a victim of crime. Be aware that pickpockets often target people they believe are unable to fight back or recognize they are being robbed. Sometimes, criminals work in pairs or small groups, with one person creating a distraction while the others steal wallets, cell phones, and anything else that’s available. Stores are more crowded during the holiday season, and that can create new safety risks for your loved one.
You should always have a record of your loved one’s credit cards, identification cards (driver’s license, passport, etc.), and all bank account information. In an emergency, you want to be able to put a stop on all transactions as soon as possible. Even after the shopping trip, you will want to make sure no unusual charges show up on your loved one’s bill. Scammers have gotten sophisticated about swiping personal identification numbers (PINs). If your loved one uses a debit card and has the option to sign for purchases, there is usually better fraud protection with a signature than a PIN.
RULE 18 -- REWARD YOURSELF
Be kind to yourself. Always find ways to recognize your hard work as a caregiver with little rewards along the way. Your loved one probably can’t shower you with lots of “bennies” for being such a good sport. You need to nurture yourself in ways that make you feel good. Think of it as being your own caregiver. There are all kinds of special treats that will nurture your soul -- some cost money, some are free. Just be sure to recognize your sacrifices in ways that help you pat yourself on the back.
Download this book for your ebook reader.
(Pages 1-30 show above.)