Options in Care: Palliative Care

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Are you caring for someone who has a terminal condition? Medical advancements have come a long way.  Even so, your doctor may be forced to sit down with you, your loved one, and other family members to consider the possibility that the best course of treatment going forward is to keep the patient comfortable. Free of pain and discomfort, your loved one can enjoy their remaining days and weeks with loved ones. This option of care is called palliative care.

Palliative care is a type of specialized medical care that focuses on the comfort of a person who has a severe illness or disease. The goal of palliative care is to improve the quality of life for the patient and their family in their remaining days, weeks, or months. Provided by a team of doctors, nurses, and other specialists who are trained in this method of care and work alongside the patient’s regular medical team, palliative care may be used alongside curative medicine, or it may be chosen in place of painful or unpleasant restorative treatments. One is never too old or too young to receive palliative care. Click here for more resources to help you better understand how palliative care works.

Palliative care teams often work alongside hospice at the end of life to give the patient relief from pain and discomfort related to their disease as it progresses. Such symptoms as fatigue, depression, and shortness of breath may be improved through the use of palliative care practices.

As with hospice services, palliative care should not be frightening or even discouraging for one who has faith in an afterlife with their risen Savior. With an enhanced quality of life and pain managed, your terminally ill loved one might have the time and opportunity to say important things to those around him or her. These final days and weeks can create beautiful memories with children, grandchildren, and others when the patient is in no discomfort but still able to engage with others.

Chris and I hope you will join our conversation this week at Heart of the Caregiver and share your heart about how palliative care practices have enhanced the life of someone you know.

 

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The Pit Falls of Family Caregiving

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For family caregivers, no two days are the same, and yet every day may feel like every other day. The reality of your life during this season of caregiving is that you cannot count on the sameness of days, but your routines will help you maintain your sanity and your quality of care.

In order to succeed at family caregiving over an extended period of time, you must operate under a plan and a set of routines that will ward off depression and manage physical disability for you as well as those you care for. Whether you care for one individual or several family members, these strategies can help you avoid falling into the pit of despair as you move from one day into the next. Your health and resiliency are critical to maintaining during this challenging time. Be sure to go out and take a walk, even if it’s only a trip down the driveway to get the mail or paper. If you have longer, go for a walk around the block or through the neighborhood. Breathe deeply and savor the fresh air and sunshine. Thank God for the beauty of His creation. Feel His love for you and your loved one.

Be sure to eat healthy meals and snacks; don’t let your hunger undermine your healthy eating plan because you forgot to pack meals or snacks. Plan ahead and your plan will succeed! Also remember, several small meals throughout the day are better than three big meals. This can help you stabilize your blood sugar and avoid an afternoon crash or slump.

Many people like having a to-do list and checking off things when each task is finished. A to-do list gives your day a framework by which to identify your accomplishments, even if that accomplishment is as small as baking a batch of cookies or changing the sheets on the bed.

Without some way to measure your progress, you might lose yourself in the void of a seemingly meaningless day to day existence.

Making some opportunities for “Me” time can also be of real benefit here. Don’t feel embarrassed or inadequate to admit that you can’t do everything by yourself. Ask trusted friends, church members, or family to step in and help you out periodically so you can keep yourself healthy and give better care to your loved ones.

For more tips on how best to take care of yourself and avoid some of the pitfalls of family caregiving, check out these suggestions from the Family Caregiver Alliance

Chris and I hope you will join our conversation this week at Heart of the Caregiver and share your heart about how you avoid the pitfalls of family caregiving.

Necessary Conversations

Having necessary conversations about End-of-Life issues shouldn’t be difficult.adult elder elderly enjoyment

As we age, we think about how we might like our last days to be. Have you given this any thought? How about your aging parent or loved one? Have you talked together with them about their wishes for end-of-life care or the legacy of memories and experiences they will leave after they are gone?

According to a 2017 Home Instead survey of seniors and middle-aged adult children whose parents were still living, nearly 90% of seniors knew how they wanted their final days to look and feel, but less than 70% of adult children were comfortable talking about their parents’ end of life planning. Also, nearly half of the adult children surveyed were more fearful of when their parents could no longer care for themselves than they were concerned about a parent’s death.

My mother was particular about her final wishes. She put everything in a large 3-ring binder that I called her “Death Book.” In her last decade, she would pull the book out once or twice a year and review its contents with me. Upon her death, everything I needed to know was in that book. My brother, on the other hand, was unwilling to go through the book with her. Each time she tried to share it with him, he would respond by telling her he didn’t want to look at that right now. It worried her that he wouldn’t let her talk about those things that were so important to her.

Conversations about final days don’t have to be difficult. Especially for people of faith, death should not be frightening, because it is a homecoming into the presence of God. But for surviving family members who are unclear or uncomfortable about a loved one’s last wishes, this time can be stressful and overwhelming. Some tools can help family caregivers overcome the discomfort and find ways to begin and even end these difficult conversations, but the trick is to take the time.

Begun in 2010, The Conversation Project helps families start and finish conversations to define last wishes. The goal is to have every person’s preferences for end-of-life care expressed and respected. Here’s a link to the Conversation Starter kit. The kit is a digital document you can save to your computer or tablet and type directly into the record.

CaregiverStress.com offers tips for end-of-life care here, and a Life Legacy Worksheetas well that you can print out and invite others to build a memory collective or other relevant information.

Chris and I hope you will join our conversation this week at Heart of the Caregiver and share your heart about having difficult conversations that can lead to observing and respecting last wishes.

5 Things Family Caregivers Don’t Want to Hear

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Caregiving is hard work, and it takes a special person to be the hands and feet of Christ when you are caring for your aging parent or family member. People mean well when they offer words intended to compliment, recognize or encourage you, but these expressions might just come at a wrong time or hit you the wrong way. If you know a family caregiver, consider these things to avoid when offering encouragement. If you ARE a family caregiver, maybe you need to share these thoughts with others.

  1. “God won’t give you more than you can handle,”or “You will be richly rewarded in heaven!”

When you feel you are at a breaking point, it really doesn’t help to hear words like these. Spiritually encouraging words may fall on deaf ears to a believer who wonders where they will find strength for today.

  1. “You’re looking tired, you need to take a break.”

I remember trying to fix myself up when my mother was dying. Her friends would come to visit her, ask how I was doing, and then tell me I looked tired. I knew I looked tired, I didn’t need them to remind me! Sometimes their words discouraged and disheartened me in those difficult days.

  1. “It must take a special person to do what you are doing. I’m sure I couldn’t do it!”

Well, it’s nice to know that someone thinks you are unique, but not so sweet that they find it so overwhelming, distasteful, discouraging, or any other negative descriptors. This phrase makes you feel even more alone on your care journey.

  1. “Why don’t you do that differently?”or “You should…”or “You should NEVER…”

These words are judgmental and cut deeply. Never compare yourself to someone else’s caregiving situation. Every family caregiver must walk their own road, and if they are not asking for help or advice, it’s not your place to offer it. If they DO ask for help, however…

  1. “Let me know if I can do anything to help.”

When you make this offer, be ready to receive a list of suggestions for how you can help. Maybe you can stay with a friend’s dad for an hour while she goes for a walk. Offer to shop for groceries and ask if you can bring things by tomorrow or the next day. Bring a cup of coffee or tea to share when you come by for a visit. Put legs on your offer and watch a support team take shape alongside you!

For more ideas on what not to say to a family caregiver, and what to say instead, click here.

For things not to say to a family caregiver dealing with Alzheimer’s, check out these ideas.

We hope you will join our conversation this week at Heart of the Caregiver and share your heart about things a family caregiver doesn’t want to hear.

Things Caregivers Wish Someone Would Say

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Caregiving can be a very lonely place to find yourself. If the one you care for has limited mobility, it’s hard to get out and run errands or even just escape your all-too-familiar environment. If communication is also impaired or challenging because of hearing deficits or even dementia, you might feel isolated and overwhelmed. Dr. Gary Chapman proposes that there are five love languages, expressions that we all need to make us feel safe, appreciated, and loved. One of these is words of affirmation. When you are providing care for a loved one, there are words you need to hear, verbal expressions that will feed your soul and refuel your energy levels. These can come from the loved one you care for, other family members or even friends. But if your primary love language is words of affirmation, you need to receive these regularly from those around you.

People often don’t even know where to begin when searching for the right words, to offer hope and encouragement that will lift you up and carry you through difficult days. Words seem empty when an observer perceives the impossible burden of caring for an aging parent, spouse or loved one.  As the caregiver, you must help other family members and friends understand what you need, and how they can offer encouragement. Make a list and share from it when someone offers to help. Don’t be shy to let others know that even Superwoman (or man) needs refuge and support from time to time!

Offers of help, invitations to get together for lunch or coffee, even merely asking how you are doing and then being still and listening to your honest answer are all ways to support and strengthen you when you are struggling to stay afloat. An offer to pick up groceries should be thanked with a list that is ready and waiting. When someone tells you that you are doing a great job, don’t downplay your own efforts. Here’s a great list of things to say from caregiving.com. For those caring for someone in the hospital or with a traumatic injury, brainline.org gives additional questions caregivers need to hear.

All family caregivers know that at the end of the day there’s so much more we could have done, but you are using the wrong measuring stick! Instead, look at everything you DID. Then give yourself some self-love and a pat on the back. You did your best, and that’s enough for today.

When I was with my mother in her last days, she told me almost daily how much she loved me. I will cherish those words forever. They kept me going when I didn’t know what else to do, or how to help, or how long I would be there. Even though I knew I was loved, I still needed to hear those words during long days of waiting, watching, and wondering. Others told me I was doing an excellent job and asked what they could do to help me. Everyone was encouraging, supportive, and caring, but my time with my mother and her words of love carried me from day to day and strengthened me in her final hours.

Chris and I hope you will join our conversation this week here at Heart of the Caregiver and share your heart about words family caregivers need to hear.

 

 

Walking the Tightwire: Balancing Caregiving with Career

Every day family caregivers face the challenges of balancing many areas of responsibility in their lives. For some, the problem comes in managing the needs of raising children with those of caring for aging family members. Others strive to find time for nurturing a marriage as well as caring for children as well as parents or grandparents. Many family caregivers also have jobs or careers that place additional demands on their time and energy. Add to any or all of these commitments things like church or community involvement, time with friends, exercise, and sleep, and you might feel like 24 hours just isn’t nearly enough to get everything done!

This week, let’s consider the plight of caregivers in the workplace. If you are balancing a career or full-time job with caring for aging parents or family members, you are walking a tightwire every day, but you shouldn’t feel alone in your struggles. Over 60% of today’s family caregivers work in addition to caring for aging family members. Some share their situation with co-workers or supervisors, but others keep things to themselves and silently strive to manage their overwhelming responsibilities.

When my mother developed a blood clot in her leg in December of 2016, I knew that I needed to be with her more than a few times a year. I stepped up my visit schedule to spend about a week every month down in Georgia. Visiting with that frequency from our home in Virginia necessitated air travel to maximize my time with my mother while minimizing the travel time it took to accomplish my mission. During those visits, I still kept up with emails, returned phone calls, and worked on projects for my company, but I did all of this early in the morning or late in the evening so that my work would not intrude on quality time spent caring for my mother. Since Chris and I own our company, I didn’t have to negotiate this time away with an employer, and my wonderful staff kept things going in my absence. But most family caregivers don’t have the luxury to come and go from work as I did during that last year with my mom.

Amy Goyer writes of her experiences as a working family caregiver in this article posted for AARP. She shares invaluable insights about her experiences and the progression of her career decisions as her parents’ health conditions worsened. If your workplace offers options like flex time or remote work, usually referred to as telecommuting, these options might be beneficial to help you during this time. You could also look into whether your situation is qualified under the Family Medical Leave Act, which will allow you to miss up to 12 weeks of work while still having job security, but there are specific employer qualifications, and this is unpaid time off.

You need to schedule a time to talk with your employer as soon as possible. It’s your responsibility to speak up and make your needs known to the right people to discover your best options. Web MD gives lots of useful tips about the importance of having this conversation. Most employers would prefer to offer some flexibility and retain a great worker rather than losing you to rigid policies and having to train a new person to take over your job.

If you find yourself in a situation where you just cannot continue at your current job, you could look at picking up a more flexible work option. Flex Jobs shares helpful information about how family caregivers can find balance, and they also post flex job options on their site.

The important things to keep in mind are twofold: first, you must take care of yourself first so you can care for others in your life. Chris and I will continue to reinforce this truth because it is the first commandment for a family caregiver! Second, if you don’t let others know what you need, they won’t know how to help. You must share, share, share! Let others know where you are struggling. Family members, friends, and neighbors, your church and work-family all need to know how to help so they can become part of your solution. Also, many of these relational resources may become an essential part of your backup plan in the case of an emergency that comes out of the blue.

Chris and I hope you will join our conversation this week here at Heart of the Caregiver and share your heart about balancing caregiving with your career.

Making Room for Mom

Caregiving from far away is challenging at best, as Betsy learned when her career took her 400 miles away from her aging mother. When we married, I moved almost as far from my mother. It’s one of the reasons we started our homecare business; we saw how hard it was to know your parents are aging well when you live at a distance.

When Betsy and I moved to Roanoke, we found a house that would have enough room for one of our mothers to move in and have her own space if that became necessary. Removing the distance is one option that might make care more manageable. But if you are contemplating moving an aging parent or relative into your home, there are several factors you should consider before making a commitment that might be larger than anticipated.

First, think about whether you might need to make some modifications to address your loved one’s aging needs now and in the future. Is your home age-friendly for both younger and older inhabitants? When Betsy’s mother would come for a visit, her bedroom (our guest room) was upstairs on the same level as our children’s rooms. While in her late 80’s, she could still negotiate the stairs and said upon leaving that her legs were stronger for having climbed stairs every day. Had she ever come to live with us, she would have needed a downstairs apartment with no stairs at all, because she could no longer climb stairs in her 90’s. Other decisions might involve bathroom modifications to add grab bars or a walk-in shower, or wider doors to accommodate a walker, wheelchair, or second kitchen so that your parent can make their own meals to feel more independent. Here’s a link from Agingcare.com that illustrates more about home modifications.

Multigenerational living has both its benefits and its challenges. You need to consider and respect your family’s feelings when deciding to move an aging relative into your home. Also, if you have siblings, listen to their thoughts and feelings as well. Remember, it takes a healthy community to balance care for the best outcomes. Invite lots of input, and don’t forget to ask your mom or dad what they think about how moving in might work. Click here to find out more about multigenerational living.

Then there is the cost of having your mother or father move in to live with you, and the question of their care needs assessment. If they need care, do you have the time to provide that care in addition to your current responsibilities? Will you be balancing the new responsibility of caring for an aging parent or relative with managing a job or career and nurturing a family? If you have a spouse, kids, work, pets, church, and community involvement, it’s easy to lose things in the whirlwind of activity, and you certainly don’t want one of those things to be your aging parent OR your family!

Caring.com gives an excellent summation of things to consider when Mom might be moving in.

Betsy and I hope you will join our conversation this week here at Heart of the Caregiver and share your heart about finding balance when mom moves in.