When Families Disagree on Care

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When family members are providing or coordinating care for an aging parent or loved one, some families seem to come to an agreement quickly on every issue that arises. When this happens, something beautiful occurs, and the care comes together smoothly. This was the case with Chris’s siblings when their mother could no longer communicate her wishes in her last days. Although no living will or advance medical directives were in evidence, five brothers and sisters were in complete agreement on every decision their mother’s doctors asked them to make. Their beautiful unison voice amazed the doctors and hospital staff alike. It was evident to everyone paying attention that this family loved and trusted each other completely, despite vast differences in age, career, education, and state of residence.

We have all seen families who struggle to talk about difficult issues and seem unable to find agreement on crucial decisions. Adult children quarrel with each other, their parents argue back, extended family members chime in, and even the medical advisors take a turn. They bicker back and forth about everything from who should manage the house, the money or mom’s medication schedule to whether dad needs to move in with one of them or be placed into a care facility. This discord is even more unpleasant when money is prominently featured in the conversation, or when one or two family members are pushing against a unified front made up of the rest of the decision-makers.

When conflict arises within a family dealing with caring decisions, it upsets everyone. This strain spills over onto friends, neighbors, and the one requiring care, even if they do not appear to be engaged in the conversation. In times of crisis such as illness, injury or a frightening diagnosis, the added stress makes tensions run higher for everyone involved in the decision-making process.

There are a few steps you can take to minimize conflict within your family.
1. Everyone needs to talk through possible scenarios ahead of time and try to come to an agreement. Talk to a medical professional and learn as much as you can about the possibility of future developments.
2. Work with a professional care manager who can offer insights and share resources. This person can also clarify expectations and suggest possible scenarios the family should negotiate before they actually occur.
3. Have your parents or loved one consider drawing up a living will or advance medical directive. The Five Wishes are an excellent resource to use when working through this course of action. Another process is called the Final Years Plan. Having this plan in place ahead of time can help discordant families know ahead of time about their loved one’s wishes.
4. Pray together as a family before any decisions are made. Ask your pastor to join you or your loved one’s pastor. Seek spiritual guidance and the Holy Spirit’s presence to sooth any past or present turmoil that could hinder unified consensus in the decisions that must be made.
5. Finally, talk openly about hard things like feelings, regrets, memories, and family history. Practice patience, embrace sorrow, and welcome laughter into the process. It probably won’t come quickly, but when it does the laughter will be well worth the wait.

Chris and I hope you’ll join us this week here at Heart of the Caregiver and share your heart about managing family conflict in decisions about care needs for your aging parent or loved one.

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Honor Your Mother

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This weekend we will observe Mother’s Day. In Ephesians 6:3 Paul reminds his readers that honoring our parents is one of the ten commandments and the first with a promise: that it may go well with you and that you may enjoy long life on the earth. I don’t know about you, but I’d really like to enjoy a long life that goes well!

So what is the best way to honor your mother? This can take many different forms depending on your family’s traditions and customs. When I was growing up, my father always made sure there were red flowers for my brother and me to wear to church in honor of our mother. We went out for lunch and gave our mother cute cards, usually made in Sunday School. My mother would wear a red flower on Sunday and send a card to her mother earlier in the week. Our grandmother lived far away from us. Mama would call her on Mother’s Day and have a pleasant visit. My father’s mother died when he was a child, so he always wore a white flower in his lapel when we went to church on Mother’s Day.

My own first Mother’s Day was just three days after our first child was born. We came home from the hospital on Saturday, and the next day Chris presented me with a big Mother’s Day card! Today my own mother is deceased, and I miss her greatly. My children are spread far and wide. When they ask what I would like for Mother’s Day, I tell them that just knowing they are living healthy, happy lives is enough of a gift for me.

Honoring your mother looks different at different stages of life as well. As a child, doing what you are told honors your mother. As an adult, you might find yourself pinched between honoring your own mother and being honored by your children. As you grow older and see your mother in need of care, honoring her may mean caring for the one who cared for you in a way that preserves her dignity while also meeting her needs. Honor has many faces; which one do you wear as a family caregiver?

We hope you’ll join us this week at Heart of the Caregiver and share your heart about how you will honor your mother this week and in the weeks to come.

Living with Your Choices

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Our choices are important. They define who we are and demonstrate what we believe. From our earliest days until our final hours we live from one decision to the next. If those who raised you did their job well, your first choices were simple and relatively easy to make. If you insisted on wearing your favorite sandals to school in February, you learned that your toes would be freezing! Choosing to wash your hands frequently during cold and flu season helps you stay healthy when others are sniffling and coughing all around you. Choosing to exercise, eat well, and sleep enough can lead to a longer and more productive life as you age into your later years.

 While some choices seem relatively insignificant, like what to eat for supper or which outfit to wear today, even these can have lasting effects. What if you decide to go casual and then get a call offering you an interview for your dream job? You might wish you had chosen something different when you dressed for your day. And then there are the hard decisions that must sometimes be made. When a loved one receives a frightening diagnosis or develops a chronic condition, your choice might be whether to become the family caregiver who gives care, or who finds and coordinates the necessary care through other means.

 Becoming a hands-on family caregiver is a choice some people make because they are in a good position to take on this role. They have the physical stamina, emotional health, and financial stability to make this job their full-time occupation, and they are motivated by love, concern, and a willing spirit. Others may accept this responsibility because there is no other reasonable choice; they live primarily in isolation with few family members nearby and financial resources that are stretched too thinly to support hired help. Another group might be in a position to use their organization skills, and possibly financial resources, to coordinate care between other family members, friends and neighbors, and even professional caregivers through a home care agency.

 The best choices for family caregivers are made from a pool of resources that have been developed over weeks, months, or even years of preparation for the possibility that care will be needed. Unfortunately, sometimes family members find themselves thrust into the caregiving position by circumstances beyond their control. If this happens to you, try to remember that you are not alone! There is a strength to be found in the choices you make, including the availability of resources in your community, your ability to manage your time effectively, and even the attitude you bring each day to your situation. Most importantly, remember that God is in control of your unique and very personal situation, so pray and ask for strength and solutions. He will hear you and will answer.

Chris and I hope you’ll join us this week here at Heart of the Caregiver and share your heart about how you approach living with (and making the best of) your choices.

Living with Dementia

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I love working jigsaw puzzles, the bigger and more complex the better! I’m one of those people who can look at the big picture, focus in on the hole for one piece, and then go and find it. I look at the hole’s shape, the colors around it, any unique characteristics the puzzle piece might have. Then I go on the hunt, and usually within a few minutes I’ve found my target.

Dementia is a lot like a jigsaw puzzle, only one where the picture changes daily, as do the shapes of the pieces and the size of the puzzle! Early on in the disease’s development, it might seem that boundaries are clearly defined and solutions to minor problems are relatively easy to identify and manage. Things like repetitive words and stories are well tolerated, and forgotten words or details can be easily explained away or minimized. But at the disease progresses, management strategies become much more complex and elusive to family members and friends. What works today to get your dad to take a bath might not work tomorrow or next week. Explaining why wearing clean clothing is important might elicit compliance or outright rebellion from your mom. Even routine tasks like brushing teeth or combing hair could confound both you and your loved one. And while there may be good days and bad days, the family caregiver must approach each day as a new puzzle to solve.

To solve a puzzle, it’s helpful to have a big picture for reference. Talk to a medical expert who can suggest resources that will help you understand how the disease might progress over time. Avail yourself of books like The 36-Hour Day (the gold standard) or others; there are many to choose from. Plug into resources like support groups, either online or in-person if you can get away to attend. Download the Alzheimer’s Daily Companion app to your smartphone for daily encouragement, suggestions, and resources.

Keep a journal; this is the best way to keep perspective on your journey in caregiving, and it could also be a helpful resource for others when you need to be away for a while. Keep records of challenging behaviors that emerge over time, and see if you can identify patterns for circumstances, events, or even times of day when these more commonly occur. Also, keep track of what solutions work and don’t work. It is especially important to make a note of those days when all the puzzle pieces come together, and a beautiful picture emerges. Celebrate those times and reflect back on them when times get tough.

Chris and I hope you’ll join our conversation and share your heart about how you work the puzzle of living with dementia as a family caregiver.

Living with Priorities

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Jesus, from a very early age, had a sense of his life’s purpose. When he was only twelve years old, scripture shows us a child teaching the leaders of the temple in Jerusalem. As he grew to adulthood, this sense of purpose led him to seek out the disciples, put together a team that would continue the mission after he was gone, and equip them for that responsibility, even though they didn’t understand that was what was happening!

As a family caregiver, what’s your why, your reason for getting up every morning, for going through your day with purpose and intentionality? Do you have a sense that you are on a mission, or do you drag yourself from slumber dreading what the day holds? If purpose drives you out of bed each morning, your day begins with positive energy that pulls you forward. If, on the other hand, your day is weighed down with fear or dread, that negative energy will increase the gravity that holds you down and resists your day’s beginning.

We all need a sense of direction to frame our day, define our achievements, and give ourselves a sense of accomplishment in the overall scheme of things. Without this map our days lack meaning. Family caregivers who face daily uncertainty, challenges, or even monotony may find themselves struggling to define clear, quantifiable accomplishments by which to measure their progress, but these metrics are essential for finding that sense of purpose that will give you momentum. These can be as simple as doing an online yoga class, reading a scripture passage, writing in a journal, or posting to a blog. They might include doing a load of laundry, giving your loved one a bath, or taking a break while someone else pitches in to provide care.

The critical thing to remember is to start small. Don’t set five or six accomplishments daily! Start with two or three, or maybe only one. Accomplish just this for several weeks but give yourself rewards for every day it happens. Perhaps post it to Facebook to provide yourself with accountability and a platform from which to toot your horn. Celebrate each time you achieve your goals!

Chris and I wear Apple watches, and since January we’ve been working to close all the Activity rings each day. There are 3 rings: one measures 30 minutes of exercise, another measures how many calories are being burned, and a third encourages me to stand and move around every hour for at least 12 hours each day. The watch keeps track of most of this behind the scene, without requiring me to do much. I do tell it when I am exercising, but that’s about it. For the “stand” goal the watch will remind me each hour if I have not met the requirement for that hour. I have closed all three rings every day since early January, and now it’s a priority in my life. No matter what comes along in my day, I know I must find a way to get 30 minutes of exercise, burn at least 400 calories, and stand and move around some at least 12 hours in the day. Some days this means I’m walking fast laps in my house at 10 pm, or getting up at 5:30 am to go to the gym, but every day I’m committed to making this happen. It literally gets me out of bed each morning!

We all need clearly defined priorities that guide our actions each day. Our priorities give our lives foundation and structure; they identify who we are as individuals, as sons and daughters, as friends and family members, and as family caregivers. With that in mind, what are your priorities as a family caregiver? Do you want to enhance your loved one’s life by improving their hygiene, or help them re-engage with old friends, or involve them more in their grandchildren’s lives? And what about your personal goals? Do you want to lose 15 pounds, or exercise daily, or go to lunch once a week with friends? If you haven’t already defined your priorities for yourself or your loved one, spend some time in the next few days exploring what is important to you. Make a list and then whittle it down to what is realistic. Ask a couple of friends who know you well to help you with this, because they might bring clarity to a difficult task. Number your priorities first as 1-5, with 5 being most important. Remove all the 1’s and 2’s. Now take your remaining list and look at the 5’s. Prioritize them by importance. This is the list you will start working with, building priorities that will launch you each morning with purpose and energy for whatever the day holds!

Chris and I hope you’ll join us this week here at Heart of the Caregiver and share your heart about how living with priorities helps you as a family caregiver.

Cafeteria Caregiving

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Being a family caregiver is never a one-size-fits-all kind of role. Every situation is different, and every solution is unique and individual. Care comes in all shapes and sizes. Sometimes providing care just means being a family member or friend who lends a hand with housekeeping, running, errands, and cooking a meal from time to time. This type of care requires virtually no skill set other than a cheerful heart, a willing spirit, and a flexible schedule.

At other times the necessary care might be more personal in nature, like assisting with toileting, standing or sitting, walking, bathing, administering medications and monitoring vital signs. These tasks may feel more like nursing than like being a friend, and they definitely require some level of training. While many of these skills can be learned through verbal coaching and reverse demonstration, some (like helping to lift a loved one who needs assistance when moving from sitting to standing) may also require more physical strength and capability. Also, your mom or dad might be uncomfortable having you help them with more intimate care like bathing or toileting.

Chronic disease management further complicates caregiving. Conditions like COPD (Chronic Obstructive Pulmonary Disease), congestive heart failure, diabetes, and Parkinson’s Disease come with special care needs that you might feel are outside your ability to support fully, but this doesn’t mean you cannot continue to manage the necessary care. If dementia is also a factor, you might find yourself needing a cafeteria plan of solutions to navigate the spectrum of care your loved one requires.

When barriers arise that prevent or limit your ability to care for your loved one, it may be time to consider other options like engaging a licensed home care agency to provide professional caregiving services, modifying the home to accommodate declining abilities, or moving your loved one into a facility that can more effectively handle their advancing care needs. This in no way means you have failed as a family caregiver, and there are lots of available resources to help you put together a cafeteria care plan that will work for you and your loved one. CaregiverStress and Help for Alzheimers Families are both great places to start.

We hope you’ll join this week’s conversation here at Heart of the Caregiver and share your heart about finding the right answer for your particular caregiving situation. We’re here to help!

Are You in a Sprint or a Marathon?

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Being a family caregiver is a lot like training for a race. Make no mistake here; Betsy and I are not runners, but we both know that how you train depends on what kind of race you are planning to run. If you want to run in a 5k, you can be ready in a matter of weeks, but if you’re going to run in a marathon, you will need to prepare over a much more extended period. And if you are already a runner, then training goes much more quickly than it does if you have no previous experience at running.

In a similar vein, family caregivers don’t always have the luxury of knowing how long they will be providing care. Sometimes your aging loved one’s need for care seems to creep up on a family unaware. Betsy experienced this with her mother over the course of several years. Living far from her family home, she saw her mom a few times each year and was able to recognize changes in Sarah’s abilities that were invisible to the son who lived next door. Only in the last year of Sarah’s life did Betsy’s brother agree that their mother needed more help, and when their mother broke her hip two months after her 97th birthday flexibility and preparation ahead of time helped the family navigate the changes that happened rapidly over a very short timeframe.

Betsy’s mother experienced two types of decline: a sprint and a marathon. The marathon came first, over the last five years of Sarah’s life. During this time Betsy’s brother set up home care services for a few hours each week to help with light housekeeping and laundry. The professional caregivers who came a few times each week took on household upkeep and also made sure Sarah was doing well. Initially, Sarah resented the “assistance” but agreed to it because she realized that it did make her life a little easier. Over the years those visits went from once or twice weekly to more often as Sarah stopped driving, stopped cooking for herself and began to have difficulty with more intimate tasks like bathing and dressing.

A few months before her mother’s 97th birthday, Betsy convinced her brother that their mom needed someone with her every day, and possibly overnight as well. Since neither of them was available to do this permanently, they worked out to have professional caregivers work a split shift of morning and evening hours to include weekends. This seemed to cover getting in and out of bed, meals, med reminders, bathing and dressing assistance, and driving for errands like grocery shopping and doctor’s appointments. The schedule worked well until the morning Sarah fell and broke her hip, about two months after her birthday. When she came home from the hospital, she needed someone with her around the clock who could help with things too medical for Betsy or Billy to handle, so having professional caregivers already in place was a huge blessing!

Sarah’s marathon of care changed to a sprint in those last seven weeks of her life, but because both of her children were watching her needs and changing her care over the previous five years, they were as prepared as they could have been for the last sprint. Betsy went for the first 10 days after the fall occurred, then returned home for a few weeks. She went back to her mother’s right after Thanksgiving and stayed until her mom’s death on December 21, 2017. Billy lived next door but was grateful for his sister’s ability and willingness to come and live in their mother’s home for those last weeks. And Betsy was able to do this because she had been preparing for this possibility for the last couple of years. She had put systems and people in place to cover her in her absence and keep things running in our business and at home.

If you have aging parents or family members that might need your help in the future, begin now to observe and ask questions. When you visit, take notice of the cleanliness and upkeep of the house. Check foods in the pantry and refrigerator to make sure there are fresh, healthy options. Notice if mail is piling up or past due notices are being received. Ask your mom or dad how their money is holding out if you have that kind of relationship, but be careful not to sound like you are wondering how your inheritance might look! Try to couch any money conversations around topics like which Medicare supplemental plan they are on and whether the copay covers enough. Even bring up how high your own utility bills were over the cold winter or hot summer, to see if this leads to a conversation about choosing between paying the electric bill or buying groceries.

If your parent has a chronic illness or condition that might make basic household tasks more challenging, suggest getting a housekeeper or caregiver who could take over things like dusting, vacuuming, and doing laundry. If this suggestion is met with any resistance, try to drop it and then revisit it at a later time. Talk regularly with other family members and friends if you live far away to find out if they have any concerns. Consider what kind of help might be needed over the coming years if not today. If you haven’t already done so, begin a conversation with an organization that can help you find the assistance your loved one may need when the time comes.

We hope you’ll join us this week at Heart of the Caregiver and share your heart about training for your sprint or marathon in family caregiving.