Categories
Caregiving Dementia

3 Tips That Make Dementia Care Less Frustrating

When I tell people that I provide dementia care, the most common response is an exclamation of sympathy and a comment about how patient I must be. I know dementia caregiver stress is legitimate for many reasons and I can understand their reactions. But I’m not a particularly patient person and I rarely feel called upon to be patient with my clients. Why is that?

The secret to a more enjoyable experience in caring for someone who has dementia lies in our expectations. Here’s what my expectations are when I’m with someone who has dementia.

1—Reminders and memory-jogging will not work with dementia

When I was raising my children, I spent a lot of time explaining what they needed to do and then reminding them of what they had forgotten. When they had a test at school, I helped them by quizzing them on spelling words, times tables, and history facts. I expected repetition and reminders to be effective. They were effective, because my children had the ability to retrace their thought processes and recall information.

With my dementia clients, I do not expect memory testing to work. People experiencing dementia are losing memories, but they are also losing the ability to remember. Quizzing them or jogging their memory will not help them remember. It will only make them feel embarrassed, inadequate, and lost. Instead of trying to jog their memory, I happily repeat whatever information they need, whenever they need it. My expectations are aligned with their abilities.

2—A person with dementia will read my feelings and moods expertly

I expect people who are experiencing dementia to be operating without rational thought, yet their intuitive thought systems to be operating normally. This means that they will be experiencing none of the distraction our rational thought systems provide and have all the more time to read my feelings and moods.

Whenever I am with someone experiencing dementia, I assume the role of mood creator. I make sure that I am not radiating sadness, concern, or amazement at their impairments. For both of us, I am looking for something beautiful, funny, or heartwarming to enjoy. There is always something from one of those categories available in the present. If not, we go for a walk or drive to find it. I know managing mood is my responsibility.

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3—Rational thought will not be available to someone with dementia

I think of dementia and rational thought in terms of functions. The top three functions I do not expect my clients to be able to perform are seeing cause and effect, prioritizing ideas or actions, and being able to follow the steps of a task or sequence. Because I don’t expect them to be able to do these things, I don’t become frustrated when they can’t. I understand that they don’t have those skills and use my own when they’re necessary.

So, although it seems obvious to me that icy sidewalks mean dangerous walking, I don’t expect it to be apparent to my clients. And when we need to get ready to go somewhere on time, I focus our attention on the next thing that needs to be done, not on the destination or looming deadline. When a task needs to be done, we do it together as teammates.

When our expectations match our companions’ capabilities, there is less dementia caregiver stress and less stress for the person experiencing dementia or Alzheimer’s. This is the secret to lowering frustration and stress for both partners in the dementia care experience.

Judy Cornish is a former eldercare lawyer and the former owner of Palouse Dementia Care, a dementia care agency that provides in-home dementia care to seniors in northern Idaho. She is the author of Dementia With Dignity and The Dementia Handbook as well as the creator of the DAWN Method of dementia care. Judy believes that with a little training, families can provide excellent dementia care at home with less stress and more companionship. www.thedawnmethod.com 

Categories
Mental Health

7 Practical Yet Simple Steps to Improved Family Communication

“Constant kindness can accomplish much. As the sun makes ice melt, kindness causes misunderstandings, mistrust, and hostility to evaporate.” —Albert Schweitzer

Meet Barbara:

“Rant alert! As if caring for your loved ones through terminal illness or behavior issues isn’t bad enough, what gets me is when your siblings can’t find any compassion or consideration.

“My mum moved into residential care two weeks ago, and she loves it. Why? Because she has company and gets good care. I fully supported her decision.

“But my brothers? Oh no! One stopped talking to me. The other doesn’t understand why I haven’t found a job and moved out of the family home, and he wants me to pay for my mum’s residential care.

“Times like these are when I’m convinced that I’m adopted. I’m so angry! I have constantly put my dreams on hold, and I now finally get a chance to rebuild my business with some great products and services but with no support from my family.”

Communication within Barbara’s family needs mending.

Interestingly, during the same week Barbara posted in her online support group, another caregiver posted these words: “I HATE my siblings. That is all.”

This member received 29 responses, with many sharing her sentiments and saying, “Me too!”

What’s going on? Why is there so much hatred among some family members?

Where a good relationship exists, the caregiver, patient, and family laugh together even when they make mistakes. Conversely, situations sometimes erupt and reveal communication gaps when there is friction. Instead of working together, some siblings only have feelings of bitterness, anger, and resentment toward each other.

What You Can Do About Family Conflict

One family therapist explains an important reason why brothers and sisters are so often in conflict:

“Each family has a certain number of resources, some emotional and some material. When siblings fight, they usually compete for these resources, including everything from paternal love to money and clothes.”

In Barbara’s situation, some of the conflicts and breakdowns in communication seem to be about money. One of her brothers believed that she should pay for their mother’s residential care. Other issues in Barbara’s family involve feelings of resentment—at least from Barbara’s perspective. One brother wants Barbara to move out of the family home and be on her own—also about money.

The only way Barbara and her brothers can get to the core of their disputes is to talk openly. Such a meeting involves interpersonal communication skills, where the siblings can exchange information, feelings, and meaning through verbal and nonverbal communication, ideally in person.

But I believe the most critical communication skill is effective and active listening, which builds trust. Through it, you can make and bring opposing ideas closer together. Conflicts or confrontations often occur due to family stress and other negative emotions, such as worry, anger, grief, guilt, etc. These negative emotions not only affect your health, but family dynamics as well.

Barbara might have been experiencing inner emotional turmoil, which caused her to express herself so vehemently in her online post.

In the field of psychotherapy, there exist four methods of conflict resolution. They include:

1. Competition. This method refers to a power struggle involving who gets the upper hand. The result is, “I win, and you lose.”

2. Accommodation. You concede to resolve issues with this style. The result is, “I lose, and you win.”

3. Compromise. Many believe this is the best way to resolve conflict, resulting in “I lose, and you lose.”

4. Cooperation. Referred to as a “win-win” situation, both parties cooperate for the best outcome in their favor.

Conflict Can Happen in Any Relationship

Regardless of the type of relationship, there are four common causes of severe disagreements or disputes:

1. Lack of shared understanding

2. Poor communication skills

3. Unclear or unfair expectations

4. Power plays and manipulations


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Use These Seven Simple Steps to Improve Your Family Communication

Step 1: Prepare to listen with understanding.

In Barbara’s case, she should ask to meet with her brothers face-to-face, saying calmly, “Let’s talk.”

Step 2: Engage in active listening.

Barbara must engage in active listening by nodding or making statements such as, “I see,” or “I get it,” asking sincere questions, and expressing herself with mildness and respect for better results.

Step 3. State your position tactfully.

In this step, you should avoid blame, shame, or guilt to present your case. Use statements that start with “I.”

Step 4. Give the benefit of the doubt.

Expect the best results. Barbara could assume that her brothers would be sympathetic to her point of view.

Step 5. Be hard on the problem.

Focus on the issue at hand but do not attack the people. Avoid generalizing by using statements such as, “You always do this” or “You never do that.”

Step 6. Resist casting blame.

The only time casting blame is adequate is when you’re blaming yourself, which will denote humility. Make statements such as, “I messed up; I apologize.”

Step 7. Negotiate with confidence.

You are not afraid to confront the issues. Nearly everything is negotiable.

Aim for a win-win solution. It may not be easy, but it is well worth the effort.

In addition to the above seven steps, showing empathy can help, as some refer to this quality as “The Bedrock of Conversation.” How so?

According to Dr. Bernard Guerney of Pennsylvania State University: “Empathy is the capacity to appreciate the other person’s feelings and point of view—whether you agree with him. Empathy is the foundation upon which we build everything else.”

Empathy allows you to put yourself mentally in the other person’s shoes so that you can feel and think as they do. Doing so will result in understanding, appreciation, and respect, even if you disagree with their point of view.

Empathy serves to foster better communication people want and need.

To Summarize:

Communication is the exchange of thoughts and feelings. Miscommunication is a failure to communicate adequately. As with all conflict, family conflict occurs due to a lack of shared understanding, poor communication skills, unclear or unfair expectations, and power plays and manipulations.

Show empathy.

As a caregiver, I implore you to follow the seven practical yet simple steps in this article and watch communication within your family improve. With the stress, overwhelm, and struggles you are undoubtedly experiencing in caring for your loved one, you (all of us) need family!

We must try to get along.

Begin now and make your caregiving days less stressful and more loving, joyful, and peaceful through effective communication with family.

Rosa Chillis is the author of “A Family Caregiver’s Guide: 7 Secrets to Convert Negative Triggers to Positive Emotions.” She was a 24/7 caregiver to her dear husband for three years, including hospice at home. She holds a Master of Education degree and is a Certified Caregiving Consultant. As an experienced caregiving wife, she has walked in your shoes. www.goldenpenllc.com 

Categories
Technology

6 Call Blocking Features that Help You Stay Connected Safely

Scammers are becoming so tricky that almost anyone might fall into their traps. People with cognitive limitations or dementia are especially at risk of losing significant amounts of money to the scammers. This article identifies six call blocking features that can help you and your loved ones stay connected safely.

Everyone I talk to says they frequently receive phone calls from scammers, and most have a friend or family member that has been victimized by these criminals.

Last week, yet another friend of mine reported that scammers had tricked her dad into giving out sensitive information. Again.

She contacted me for some advice about better protecting her dad from the crooks. This article is part of my response to that friend.

Ironically, the scammer claimed to be from a credit card company’s anti-fraud department. They said they were calling to verify whether the purchase of an expensive new iPhone on their credit card in a faraway state was legitimate.

Calls like this can trip up anyone. People who get tricked by scammers should be angry at the criminals, not themselves.

Call Blocking is the Best Defense Against Scammers

So how can we protect ourselves and our at-risk loved ones from these scams? Especially for loved ones dealing with dementia, it is not enough to tell them not to give sensitive information to callers.

Call blocking technologies are available that can substantially reduce the likelihood of losing money to criminals. These technologies also reduce or eliminate the annoying robocalls that plague our phones so that when the phone does ring, it is likely to be someone you actually want to talk to.

Many companies offer call blocking apps for smartphones. The Federal Trade Commission’s most recent guidance for consumers acknowledges the existence and utility of these call blocking and call labeling applications.

PC Magazine published a good article about the robocall and scam caller problem. It covers the iPhone’s built-in options for restricting calls and briefly describes several well-regarded call blocker apps.

I did some preliminary testing of a few of these apps but not an in-depth evaluation and comparison. Eventually, I plan to create a buyer’s guide for call blocking apps. Until then, I have formulated a list of the key features that make an app especially useful for family caregivers and their loved ones, enabling them to stay connected safely.

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Six Call Blocking Features that Help You Stay Connected Safely

Here are the key features I look for in a call blocking app as a family caregiver. Many of these apps have a free version, but you generally need to upgrade to the paid version to enable some of these features.

1. The ability to block phone calls and text messages. Both calls and texts are common attack vectors for scammers. Ideally, the app has an option that uses your contact list to allow only contacts to ring your phone or send texts to the phone. This is especially important if the phone user is at risk due to dementia.

2. The ability to completely block known scammers rather than sending them to voicemail. As noted in the PC Magazine article, some apps go beyond blocking to actively engage scammers in simulated calls. This keeps the scammer on the line as long as possible, thus reducing the number of potential victims the scammer can get to that day.

3. The ability to notify a device other than the loved one’s phone of new voicemail messages. This way, the family caregiver knows there is a new voicemail to review.

4. The ability for a family caregiver to check and delete voicemail messages from a device other than the loved one’s phone, such as by logging into the account via a web browser. This way, the caregiver can listen to, and act on, voicemails as necessary. This is useful for day-to-day communications management and protecting loved ones from scammers.

The opportunity to manage voicemail remotely is important because some scammers are purposefully skipping the phone call and going straight to voicemail. Thus, they can quickly push recorded voicemail messages out, and they don’t have to hire as many people. Apparently, even the crooks are having trouble finding enough workers.

Another reason some scammers are going straight to voicemail is that doing so may allow them to skirt laws restricting certain types of phone calls. They argue that the laws don’t apply to them because they are not ringing anyone’s phone.

5. The ability for a family caregiver to remotely review call logs, both inbound and outbound, from a device other than the loved one’s phone. This capability is helpful for day-to-day communications management and minimizing losses to scammers.

Outbound calls to people not on the contact list or to financial institutions may be a response to a scammer that reached the loved one by some means other than a phone call. Being able to remotely review call logs enables caregivers to know about and act on this information.

6. The ability to manage contacts from a device other than the loved one’s phone. This way, the caregiver can add, delete, or update contacts anytime from anywhere.

I hope you find this article helpful in protecting yourself and your loved ones from scammers and annoying robocalls.

Ken Clipperton is the founder of Caregiver Technology Solutions, which helps family caregivers and their loved ones stay connected safely at home and when transitioning to new living situations. Ken has more than 25 years leadership experience implementing and managing IT and telecommunications systems in higher education, as well as personal experience helping his parents through multiple transitions. The technologies Ken implemented enabled them to avoid isolation and fraud. He wants to help other families experience those same benefits. www.caregivertechnologysolutions.com

Categories
Caregiving Community

Not Another Lasagna, Thanks: Asking for the Help You Really Need

When my husband was about to come home from a four-month hospitalization following a difficult stem cell transplant, a friend at my gym asked if there was anything she could do to help. I hesitated for a minute; I didn’t know her all that well, and my first instinct was to either wave her off or point her to the Meal Train sign up another friend had kindly organized. But my freezer was full. What I really needed was less conventional: help with rearranging our guest room to accommodate Brad’s care needs from someone who I knew could deadlift.

“Actually,” I said, “would you have time to come over and help me move some furniture?” She said she’d be glad to, and with her aid I got that furniture moved without throwing out my back. I also learned the importance of asking for the specific, real help that would really give me a boost or a break during a long caregiving journey.

Our individualist, self-reliant culture often leads caregivers like me to demur in the face of vague offers (we’ve all heard “let me know if I can do anything,” right?), or to say yes to whatever is offered—even if it’s a superfluous lasagna. Asking someone to fill a gas tank or pick up laundry detergent on their Costco run instead can feel vulnerable. But overcoming our reluctance and making those requests can both meet our immediate needs and show us who’s got our back, ultimately building the community all caregivers need.

Recently, I had the chance to pay it forward to a caregiving friend, and I was delighted when she asked me to pick up the bakery muffins her sons like best, because I knew I could offer authentic support. Especially in the busy holiday season, asking for what you really need can be a gift not only to yourself but to those who truly want to give to you.

Kate Washington is the author of Already Toast: Caregiving and Burnout In America (Beacon Press, 2021) and a speaker on the systemic challenges facing family caregivers. Her writing has appeared in The New York Times, TIME, Eater, Catapult, and many other publications. She holds a Ph.D. in Victorian literature from Stanford University and lives in Sacramento with her husband and two daughters. Connect with her at kawashington.com or on Twitter @washingtonkate

Categories
Caregiving Community

Caregiver Survival During the Holidays

The holidays can be a delightful time of year. They can also be filled with anxiety.

Holidays often add stress, especially if you are a caregiver who is already feeling pulled in too many directions. The pressure of trying to make the perfect holiday can be immense, and quite frankly, who has those “Perfect Publix holiday commercial” holidays? Families coming together are not always the happiest of situations.

Here are five simple tips to make the holidays better for you, your loved one and your family.

  1. Simplify: When it comes to decorations, choose a few items that are most significant, have meaning for you and your loved ones. You might ask a friend to help decorate.
  2. Keep Meals Simple: Purchase all or part of meals at a local grocery store or restaurant — either fully cooked or ready for you to cook at home. If you prefer home cooked, share the cooking with other family members.
  3. Reduce the number of holiday activities: Limit your time away from home to match the comfort level of your loved one. Choose which events to attend based on which would be the simplest, least exhausting and most enjoyable for the person you care for — and for you.
  4. Visiting Family: You may need to prepare family members in advance for any changes or decline in your loved one’s physical or mental status. This will save many unnecessary “well meaning” discussions on the care you are providing. (Siblings and other family members tend to swoop in and have definite opinions when they may not have been involved.)
  5. Focus On the Meaning: When spending time with your loved ones, focus on celebrating the meaning of the holiday you observe. This is what really matters, and what you will remember in the future.

Do you exchange gifts? Let’s face it, most of us don’t really need more stuff. As a matter of fact, I hear so many of you saying the stuff just adds more stress!

This year, try something different. Create your own “Wish List” of gifts that you need. Here are some ideas that have come to my mind after listening to the needs of caregivers.

Coupon for Respite: How about creating a coupon booklet offering to stay with your loved one so you can get away? Offers to provide care, transportation, run errands, buy groceries, etc. can be added. If your family can’t do this, suggest they purchase a few hours of care from a home care agency or assisted living facility. Many assisted living facilities offer short term respite care.

House Cleaning Service: A gift certificate for a house cleaning service is a great gift.

Coupon for a Spa Day: A little pampering can go a long way to ease caregiver stress. A massage is one of the best things you can do for yourself.

Go ahead, ask for these special gifts from your friends and loved ones! You will be glad you did.

I hope all of you will think about how to best care for yourselves during this frantic season. The ideas above should help with that.

Holiday Blessings to all of you during this special season.

Toula Wootan
http://www.toulastipsforcaregivers.com/

Categories
Caregiving Community

Gratitude Cards for Caregivers

Have you ever cruised the greeting card aisle at a store in search for the perfect card that says exactly what you want to say or how you feel? Sometimes you get lucky and find a card right away. Other times, you read through a handful of cards and, after a while, you just settle for a decent one. Fortunately, to save you search time, the greeting card aisle has different card sections based on occasions such as birthdays, anniversaries, celebrations, baby showers, and weddings.

Now, have you ever tried to find a greeting card to express gratitude for a family caregiver? What words or emotions come to mind? How are you related to this caregiver? What is the occasion? What is the caregiving context? 

The obvious go-to gratitude cards are in the Thank You section, which provides general heartfelt messages but not necessarily about caregiving. Birthday cards can work since you can both celebrate a caregiver’s birthday and thank them for being a caregiver at the same time. Relationship cards can also work since you can express appreciation for both the relationship, such as spousal or daughter to mother, and for the caregiving dynamic. Other possible cards can be found in the Sympathy section, depending on the nature of the caregiving situation, and the Just Because section. All these cards are options but not caregiver-specific.

For me, it was slim-pickings when I searched for caregiver-themed greeting cards at multiple card aisles and stationery stores. I felt like I had to edit the cards with my personal caregiver comments. If I was having a hard time finding gratitude cards for caregivers, how many other people were having the same difficulty? At the very least, card stores should add caregivers to the relationship section. Caregiving for another person is a unique relationship, isn’t it?

After several card shopping trips and editing sessions, I decided to start my own caregiver-themed greeting card line. There are 53 million family caregivers in the U.S. and I think that is a significant amount of people that should be appreciated and recognized for their caregiving role. With my personal caregiving journey and the compassionate hearts of family caregivers in mind, I created Caregiver Cards. It is an uplifting card collection packed with messages of positivity, love, adoration, fun, and humanity for caregivers. With each card, I hope to deliver a well-deserved bright light to the caregiver who reads it. With the card collection, I hope to offer you a variety of gratitude expressions to choose from. With Caregiver Cards, I hope to create a new section in the greeting card aisle and to save you card shopping time, especially during the busy holiday season.

Jenn Chan is the CEO & Founder of Senior Shower® Project, a startup with a mission to celebrate family caregivers of older adults with a party. She sells caregiver greeting cards, creates senior shower party kits, curates caregiver gift boxes, and hosts virtual caregiver dance parties. Inspired by caregiving for her grandma, Jenn dedicates her career to elevate the family caregiver role with fun, love, and positivity. She believes caregiving is a lifestyle and becoming a senior caregiver is a life milestone worth celebrating.

Categories
Caregiving Community

Caregiver Affirmation

Have you ever heard of the Five Love Languages? It’s a concept and book developed by Gary Chapman. The central premise is that there are five different ways of expressing and receiving love. The Five Love Languages are:

  • Words of Affirmation
  • Quality Time
  • Physical Touch
  • Acts of Service
  • Receiving Gifts

You can take a quiz and learn more about the love languages here.

Most of the time, we express love primarily in the way we want to receive it. The most common primary love language by a small margin is Words of Affirmation.

As family caregivers, we don’t hear too often from our care recipients about the fantastic job we are doing. This void is why you have to turn to your family caregiver advocates like the CircleOf team and Happy Healthy Caregiver, who want to express our gratitude for the value you provide. We want to celebrate you not just during National Family Caregivers Month, but all year long. 

Instructions: Sit in silence for 10-15 minutes (or even 5 minutes if that’s all you have!), then say these Affirmations aloud to yourself. Add in any prayers or affirmations you’re working with in other areas of your life. Try this for 30 days and watch what happens!

10 Caregiver Affirmations

You show up; often when no one else does

You drop everything when you get a critical call to be with your care recipient. You are committed to your role. 

You are wise

You research and work diligently to understand all your care recipient’s options to live their best life. 

You are relentless

You face the tough questions and bring up courageous conversations. 

You are human

Your life is valuable, AND so many people count on you to keep your energy up and immunity optimal. 

You are a hard worker

You roll up your sleeves and dive into wound care, personal care, and many stinky and messy situations. 

You are part of the support system

You share your personal struggles and stories, so others are inspired and encouraged. They no longer feel isolated and overwhelmed

You are enough

You look in the mirror at the end of each day and give yourself some grace, self-love, compassion, and forgiveness.

You are courageous
You perform procedures with little to no training. You explore new alternatives. You face your worst fears head-on. 

You are a problem solver

You don’t sit back, wait and watch. Instead, you dive into the healing and helping.

You are resilient

Your life gets twisted around and turned upside down, and you carry on. Your caregiving journey requires you to cope with a crisis, adapt to a situation, and be ready for anything.

We hope you print this list of affirmations out so it can affirm you daily. We all have them—those not-so-great days. The days we question everything, cry uncontrollably and throw our hands in the air. Hang this somewhere where you can see it so you can feel validated. Caring for another human being matters. You are making a difference. We are thankful for you!


Elizabeth B. Miller is a family caregiver, Certified Caregiving Consultant, and founder of Happy Healthy Caregiver. Through her speaking, consulting, and online resources, Elizabeth helps family caregivers integrate caregiving and self-care with their busy lives. She is the host of the Happy Healthy Caregiver podcast on the Whole Care Network, author of Just for You: A Daily Self-Care Journal, administrator of the Self-Care Support for Family Caregivers FB Group, and facilitator of an Atlanta caregiver support group called the Atlanta Daughterhood Circle.

Categories
Caregiving Community

Caregiver Collective: Not Another Article About Burnout

Originally published at: https://www.caregivercollective.us/blog/caregiver-burnout

How many countless articles on caregiver burnout don’t acknowledge how impossible caregiving can seem? (Too many!) We promise that this is not going to be one of them.

We’re going to guess you’ve heard about the benefits of moving the body to relieve stress, deep breathing, connecting with others, creative outlets, and faith to prevent burnout. By now, it’s likely you know all the burnout prescriptions. 

Most caregivers are willing to do this self-care. But, honestly, the obstacles between caregiving and self-care are often insurmountable and unfathomable to others.

Intention

We reflect on when we were caregivers for our mom. How our mom – someone with ALS – lost her physical abilities and became in a sense trapped in her body, yet she developed resilience and a mindset that was freeing.

She acknowledged she had control over her thoughts. She could choose to wake up in the morning to go for it despite her circumstances and not knowing how things are going to develop and play out over time. She approached finding joy intently. There was a vast amount of suffering, both physically and emotionally, but still, she trusted that each day had possibility. 

It’s kind of radical to say that when you’re in the depths of burnout, it’s possible to still find moments of joy.

For caregivers, this is possible too.

The Superpower To Soothe Burnout

The best approach for caregivers is deciding to respond to situations in empowering ways and to skillfully process thoughts and emotions. Developing this superpower soothes burnout, and here’s how to do it:

First, we must drop any hang-ups or resistance we have to accept that we need to do this inner work of attending to our mental and emotional wellbeing to survive being a caregiver. 

Secondly, caregivers fundamentally need acknowledgment – by ourselves and others – that our experience is super hard. We need to express these frustrations, and we want people to relate to and connect with. 

Mindfulness For Caregivers

When caregivers acknowledge that this is really hard it often brings up painful thoughts and emotions we have not faced. We may realize – okay, that exists – and yet, we don’t have to let it prevent us from taking care of ourselves, connecting with others, or keeping our hope. 

This is a kind of mindfulness that we don’t have to add to our schedules. It’s a habit change and shift in mindset. Incorporating mindful awareness like this is an incredible tool a caregiver can use to respond to difficult situations developing resilience to continue on.

Breaking The Surface

Caregiving can feel like trying to survive in a dark huge body of water. People are shouting at you to get on the life raft, but you cannot figure out how to even break the surface. 

Acknowledging difficult emotions and unhelpful patterns that weigh you down can help you rise to the surface and climb on the raft. 

Once we’re on the raft, we can regain strength and perspective. We can build new tools, survey the horizon in a different way (perception is everything). We grow empowered in our ability to navigate rough waters.

We know that it seems tough to be this type of confident seafarer. Remember all the times we’ve survived, though. Remember that actually, multiple times throughout a day caregiving provides countless tales of resilience and survival. 

Untraditional Self-Care

As promised, we will never suggest caregiver burnout can be solved by slapping a little traditional self-care on it. What we do know is that caregivers develop resilience that eases burnout through inner work and learning deeper self-care tools. 

Do you find yourself facing caregiver burnout? If so, we invite you to check out the Caregiver Collective, a space where we’ll share with you practical tips & tools to make life as a caregiver easier, where you’ll gain more confidence & joy in your caregiving role, and avoid caregiver overwhelm & burnout.

Visit our website to learn more: https://www.caregivercollective.us

Caregiver Collective co-founders, Laura, an occupational therapist, and Cassandra, mindfulness teacher and wellbeing coach, have joined forces to answer the call to help women on their journey as caregivers, providing the support, resources and community that they wish they’d had, and know that women caregivers need. They show caregivers, through their personal experience and professional work as an occupational therapist working with caregivers and their loved ones every day and mindfulness teacher, wellbeing coach and mother, how they made the switch to being able to skillfully navigate difficult emotions, implement practical caregiver tools, and feel happy again about answering the call to be a caregiver.

Website: www.caregivercollective.us

Instagram: @caregivercollective

Categories
Caregiving Community

Meet the CircleOf Team: Kerry Lange, COO & Chief Evangelist

CircleOf is an app designed for and by caregivers, so we wanted you to get to know the team beyond the technology. This week we meet Kerry Lange, who joined the team in July 2021 as COO and Chief Evangelist. 

Beginning in 2016, a series of seismic losses shook Kerry’s world and enlightened her to understand just how much support it can take – physical, emotional and pragmatic – to care for a loved one who is ill. The losses also transformed her life in other ways – from inspiring her to make a career change to getting permanent reminders of people she loved and lessons she’s learned.

 

CircleOf:  You suffered three major losses in a short period of time.Tell us about what happened.

Kerry:  My father died first of lung cancer in July of 2016. Shortly after that, my mom died of ovarian cancer on her birthday in January 2017. Then, my stepfather died of multiple myeloma in December 2017.

CircleOf:  Who did the caregiving for your family while they were ill?

Kerry:  My brother and I both lived in different states from our parents so we were lucky that my parents had family nearby. My aunts and uncles on both sides of the family helped out quite a bit.

My stepmom was the primary caregiver for my dad. My Mom and stepfather cared for each other while they could, but they were sick at the same time so my aunts nearby helped quite a bit. I would visit when I could, sometimes going to the doctor with them, and I was able to spend the last month of my Mom’s life living with them.

It was complicated because my stepfather had a bone marrow transplant shortly before my mom died, which meant he had to be in quarantine in a separate part of the house. His granddaughter came in to take care of him.

Multiple family members were there and helped make food and just tried to manage the day-to-day things that came up. There were church people who came by and brought meals and helped out too.

CircleOf:  What kind of help do you wish your family had that you didn’t have?

Kerry:  We were lucky that there were retired family members nearby who had the time and ability to help so my brother and I didn’t have to disrupt our lives to be there all the time. I recognize that not everybody has that, and not everybody can afford to take time off and go to doctor’s appointments with someone who is ill.

It would have been so helpful for us to have had a centralized place to track and communicate the status of where things were, what was being taken care of, and what we needed, and just emotionally connect with people in our inner circle and community, instead of the hodge-podge way of doing things. I remember sitting with my stepfather and his spreadsheet of medications – wow, it was a lot to manage! 

CircleOf:  How do you find that sharing lessons learned about caregiving is valuable for others?  

Kerry:  Most of my friends haven’t lost parents yet, but I’ve been able to share some of my experiences with those who have recently, and I think it’s helped them a lot. My grandmother recently passed away, and my stepmom and uncles all learned a lot from taking care of my dad, and that helped when it came to caring for my grandmother. I think we can learn with each experience and that information can help us get better at caregiving. Sharing those experiences with others can make it faster and easier for them to learn from us.

CircleOf:  How did all of this affect you professionally – in your career?

Kerry:  I had been doing freelance work in the agency world, and the death of my parents made me realize that I wanted to have more purpose in my life. The next year I joined Reimagine, a nonprofit that helps to break down taboos about how we face and talk about death and dying.

I joined CircleOf this year because I saw the caregiving experiences that my family went through, and I realized that not everybody has family nearby. I thought if I could help someone be able to be more present and available for their loved ones – less worried about how they were going to get things done – I wanted to help people have that.

CircleOf:  What are some of the other ways this experience transformed you?

Kerry:  Well, my mom wouldn’t love it, but I have three tattoos that are visible reminders, not only of the experience itself, but of what I carry forward from it.

I have a compass tattoo on my right wrist for my father because he inspired me to travel, and explore, and be curious. My stepsister and I got our tattoos on the Father’s Day after he died.

I have an owl tattoo for my mom. There was an owl that lived in her backyard, and I would go and chat with it every time I visited. I had a conversation with it the morning that my mom died – it was a beautiful connection. It left shortly after that – it just flew away and never came back.

The third one says, “This too shall pass.” I got that a few years later to remind me that when life is really hard, that this is going to change. Also, when things are going really well, things are going to change. It’s a reminder to me to just be present and that life is ever changing.

In more of an internal way, my experiences around death and caregiving helped me recognize that I can’t control everything, and to be comfortable with things unfolding naturally, and with vulnerability — it really tapped into a vulnerable space inside me where I realized I could show that I was hurting and didn’t have to have it all under control, it was okay to ask for help and let people in.Tough lesson to learn, but totally worth it.

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Caregiving Community

8 Tips for First-Time Caregivers

You just became a caregiver.  NOW WHAT?

Often, this transition comes with no advance notice.  As you are leaving the hospital, the discharge planner says your loved one can no longer live independently. Suddenly, you are a caregiver. I often say, women have nine months to plan for motherhood, and nine seconds to plan for caregiving! 

If you provide any assistance to a loved one limited by illness or disability, you are a caregiver. Are you providing transportation to medical appointments?  Helping pay bills? I know. You say you are “just doing what you should do for someone you love.” However, if you are providing even one type of assistance, you are a caregiver. Most caregivers take on many roles beyond these. 

Here are eight simple tips to make this transition a little easier for you and your loved one. 

  1. Find the resources available to you. You are not alone. Many organizations now assist caregivers, as well as provide respite relief. Find the resources and support groups available to you. Start with your local community. Go online. You’ll find lots of assistance.  The “Circle Of” caregiving app is an excellent first stop. (https://circleof.com/)
  2. Develop your own self-care plan.  Include rest, a healthy diet, and at least a little daily exercise. You will need the strength! Do not neglect your own doctor’s appointments. Your health is important, too.
  3. Each day, do something you love, even if it’s for only 30 minutes. Is it reading? Gardening? Chatting with friends? Continuing these activities helps you keep your own sense of identity. Don’t “lose yourself” while caring for your loved one. I’ve sadly heard many people say, “I don’t know who I am now that I’m no longer a caregiver.” Don’t let this be you. You want to come out of this role physically and emotionally well. Maintaining your friendships is also important. Re-connecting can be difficult after a long absence. 
  4. Allow yourself plenty of grace.  You will make mistakes. It’s OK.  Admit it. Tell your loved one you goofed. 
  5. Give yourself permission to say no. You can’t do everything all the time.
  6. Keep the lines of communication open with your loved one. Let them know what you need. Remember, this is a transition for them too.
  7. If you are struggling, seek help. Being a caregiver is Very Emotional.  It’s very difficult watching your loved one decline.  Sadness, guilt, anger and resentment are not uncommon. Confide in a friend. Talk with other caregivers. Seek counseling or a support group. 
  8. Don’t forget that you are still a daughter, sibling, spouse, etc. Spend time just being with your loved one, enjoying this relationship. Don’t lose sight of it. You will have sweet memories to reflect on later. 

You may be in this caregiving role for a long time.  Things will change.  You will become more confident and comfortable. You may have good days and bad days, but it will get easier. REMEMBER: you must take care of yourself so that you can continue to take care of your loved one.

For more from Toula, check out her book “Love Stories and Timeless Tips.”

​​Toula Wootan is a dynamic pioneer, dedicated to the mission of “caring for the caregiver” in Northeast Florida and nationally. In 2008 she founded the Caregiver Coalition of Northeast Florida. The mission of the Caregiver Coalition is to collectively elevate caregiving and improve the quality of life for caregivers in Northeast Florida. The motto is “You are not alone!” Toula was also the primary caregiver for her parents for five years. Since 2010, Toula’s weekly radio show, “Toula’s Tips for Caregivers” has offered advice to caregivers. Her mission is to be the voice of the caregiver, while offering resources and assistance to those who call in. Her guests include caregivers, respected national speakers and authors, business professionals, managers of local, state and federal programs and spiritual leaders who educate and entertain her audiences. Her show is on I-Heart, several other digital platforms and her site       http://www.toulastipsforcaregivers.com/