Category: Care Partner

Which contradictory emotions affect you the most as a caregiver or care partner?

A Battery is running away from Bat.

What Are the Common Emotions of Family Caregivers?

The frustration and confusion of having two different and contradicting emotions at the same time is how most family caregivers tell their stories. You know that you love them, but you have these other opposite feelings, too, What gives? You are human and you can have two completely different feelings and emotions at the same time. Most of the time, you have one set of feelings and emotions about the persona and another set of feelings and emotions about the situation.

A few examples of conflicting emotions or feelings felt at the same time: aka Mixed Feelings

·       Happy & Sad

·       Excited & Scared

·       Confident & Doubtful

·       Love & Anger

·       Time to be with loved ones and time to be alone

·       Feeling a sense of freedom and relief when the person we have been taking care of dies and we miss them.

Having these mixed emotions drains us. Not because we have them, but because of how we “feel” about having them. Feeling the conflict is what stresses us out. Why? Because we want everything to be “just so” and in a “neat little box.” That is not reality. We must stop beating ourselves up for having mixed feelings or contradictory feelings. Keep fighting the battle of the mixed emotions and you will become emotionally drained Plus you haven’t solved the contradiction and the cycle continues.

Get rid of the word, “but” and replace it with “and.” I love my wife and she makes me crazy. “I’m glad I married him, and at times, I don’t like him very much.” It really is okay to feel your feelings. You don’t have to act on them. It really is okay that you have mixed emotions. Life is messy, relationships are messy and we can all put the “fun” in dysfunctional.

Caregiving can trigger a range of emotions, from love and compassion to frustration and anger. Caregivers may feel overwhelmed, stressed, anxious, guilty, or resentful due to the demands of caregiving. These emotions can affect the caregiver’s quality of life and the quality of care they provide to their loved ones. Understanding and managing these emotions can help caregivers to cope better, reduce stress, and improve their overall well-being.

Understanding Caregiver Emotions

Common emotions experienced by family caregivers

Here are some of the most common emotions experienced by family caregivers:

·        Stress and anxiety: Caregiving can be a stressful and anxiety-provoking experience, particularly when caregivers are responsible for the health and well-being of their loved ones. Caregivers may worry about their loved ones’ health, finances, and future, as well as their own ability to provide care.

·        Guilt: Caregivers may feel guilty about not being able to provide enough care, not being able to spend enough time with their loved ones, or feeling resentful or angry towards their loved ones.

·        Anger and resentment: Caregiving can be a thankless job, and caregivers may feel unappreciated or taken for granted. Caregivers may also feel angry or resentful towards their loved ones for their illness or condition.

·        Sadness and grief: Caregivers may feel sad or grieve for the loss of their loved onone’sealth or for the loss of the relationship they had before their loved ones became ill.

Coping strategies for caregiver emotions

Here are some strategies that caregivers can use to cope with their emotions:

·        Take care of yourself: Caregivers need to take care of their own physical and emotional health in order to provide the best care for their loved ones. This includes eating healthy, getting enough sleep, and taking breaks when needed.

·        Seek support: Caregivers should seek support from family, friends, and support groups. Talking to others who are going through similar experiences can help caregivers feel less alone and more understood.

·        Set boundaries: Caregivers should set boundaries and learn to say no when they need to. This can help prevent burnout and resentment towards their loved ones.

·        Practice self-compassion: Caregivers should practice self-compassion and be kind to themselves. They should remind themselves that they are doing the best they can and that it’s okay to make mistakes.

The Emotional Journey of Caregiving

Initial Shock and Denial

When a loved one is diagnosed with an illness or condition that requires caregiving, family caregivers may experience shock and denial. They may struggle to come to terms with the diagnosis and the changes that it will bring to their lives. This can be a difficult time, as caregivers may feel overwhelmed and unsure of how to move forward. Your hopes and dreams of the future are now either changed or gone. 

Overwhelm and Anxiety

As caregivers begin to take on more responsibilities, they may feel overwhelmed and anxious. They may worry about their loved one’s health and well-being, as well as their own ability to provide care. This can lead to feelings of stress and anxiety, which can take a toll on caregivers’ physical and emotional health. The care receiver’s needs grow over time and at first, those needs were manageable, but now, it is too much. 

Guilt and Regret

Caregivers may also experience feelings of guilt and regret. They may feel guilty for not being able to do more, or for feeling resentful or frustrated at times. They may also regret decisions that they have made or actions that they have taken. These feelings can be difficult to manage, but it is important for caregivers to remember that they are doing the best that they can. You will feel guilt, get used to it. You will have regrets, accept it. You may not have had any good choices, so you must make the choice that you will regret the least. 

Resentment and Anger

As caregiving responsibilities increase, caregivers may also experience feelings of resentment and anger. They may feel resentful of the changes that caregiving has brought to their lives, or of the impact that it has had on their relationships and other responsibilities. They may also feel angry at their loved one’s condition or at the healthcare system. It is important for caregivers to find healthy ways to manage these feelings, such as through self-care or seeking support from others.

Acceptance and Adaptation

Over time, caregivers may begin to accept their new role and find ways to adapt to the challenges of caregiving. They may develop new skills and strategies for managing their loved one’s care and may find a sense of purpose and fulfillment in their role as a caregiver. While caregiving can be challenging, it can also be a rewarding and meaningful experience.

Common Emotions Experienced by Caregivers

Stress

Caregiving can be physically and emotionally exhausting, leading to stress. Caregivers may feel overwhelmed, anxious, and irritable. They may also experience physical symptoms such as headaches, fatigue, and sleep disturbances.

Depression

Depression is a common emotion experienced by caregivers. They may feel sad, hopeless, and helpless. Caregivers may also experience a loss of interest in activities they once enjoyed.

Guilt

Caregivers may feel guilty for not being able to do more for their loved ones. They may also feel guilty for taking time for themselves or for feeling angry or resentful.

Resentment

Caregivers may feel resentful towards their loved ones for the burden of care they have taken on. They may also feel resentful towards other family members who are not helping or towards healthcare professionals who they feel are not providing adequate support.

Loneliness

Caregiving can be isolating, and caregivers may feel lonely and disconnected from their social support networks. They may also feel like they have lost their sense of identity outside of their role as a caregiver.

Fear

Caregivers may experience fear about the future, including the health and well-being of their loved ones. They may also fear their own ability to continue providing care. Another fear that arises is the fear of failure and that one is probably the worst one of all. You will not fail, you cannot fail. 

It is important for caregivers to recognize and address these emotions. Seeking support from healthcare professionals, support groups, or family and friends can help caregivers cope with the emotional challenges of caregiving.

Coping Mechanisms for Caregiver Emotions

Self-Care

Taking care of oneself is critical for caregivers. Self-care activities can help caregivers relax and recharge. Here are some self-care activities that caregivers can engage in:

  • Exercise: Regular exercise can help reduce stress and improve mood.
  • Meditation: Meditation can help reduce stress and promote relaxation.
  • Sleep: Getting enough sleep is essential for caregivers to maintain their energy levels.
  • Healthy Eating: Eating a well-balanced diet can help caregivers maintain their physical health.

Support Groups

Caregivers can benefit from joining support groups where they can share their experiences, feelings, and concerns with others who are going through similar situations. Support groups can provide a sense of community and reduce feelings of isolation. Caregivers can find support groups through local hospitals, community centers, or online forums.

Professional Help

Caregivers may benefit from seeking professional help from a therapist or counselor. A therapist can help caregivers manage their emotions and provide coping strategies. Caregivers can find a therapist through their healthcare provider, local hospitals, or online directories.

The Importance of Emotional Health in Caregiving

Caregiving can be an emotionally challenging experience for family members. It is common for caregivers to experience a range of emotions, including stress, anxiety, guilt, and sadness. These emotions can be overwhelming and can have a significant impact on the caregiver’s emotional well-being.

It is important for caregivers to prioritize their emotional health to ensure that they can provide the best care possible for their loved ones. Neglecting emotional health can lead to burnout, depression, and other mental health issues that can affect the caregiver’s ability to provide care.

One way to maintain emotional health is to identify and acknowledge the emotions that arise during caregiving. Caregivers should allow themselves to feel and express their emotions, as bottling up emotions can lead to further stress and anxiety. It is also important to seek support from others, such as family members, friends, or a support group, who can provide a listening ear and emotional support. 

Another way to maintain emotional health is to practice self-care. This can include engaging in activities that bring joy and relaxation, such as reading, listening to music, or taking a walk. Caregivers should also make time for physical exercise, healthy eating, and getting enough sleep.

The emotions just pop up. It is okay, be curious about them. No judgment is allowed, they are thoughts and feelings. You

don’t have to react to them or act on them. Don’t stuff your feelings down, they will eventually come out and it probably won’t be in a good way.

My Husband is Not a Good Caregiver

“He doesn’t do what I want him to do.” “ He acts like he is bothered when I need his help.” “ I have to tell him exactly what to do or nothing gets done,” When these types of statements are made, what is really going on? Probably a lack of good communication. Becoming a family caregiver is on-the-job training. We aren’t born with this set of skills. We need some help and training.

It isn’t always the husbands that are not good caregivers. Sometimes, wives or partners are not good caregivers either. Do you feel like you’re doing all the work and your partner isn’t pulling their weight? It’s not uncommon for one spouse to take on the role of caregiver when the other is sick, disabled, or has a form of dementia.  However, it can be a challenging and overwhelming task with some anger and frustration thrown in for the family caregiver and the care receiver.  

I know, sometimes the care receiver is a pain in the ass. They won’t do what they are told and you are pissed because some of their life choices brought this on. That is another story.

Being a caregiver or a care partner for a spouse can be emotionally, mentally, and physically draining. It’s a role that requires a lot of patience, compassion, and understanding. Unfortunately, not all spouses are cut out for the job. Your husband may be well-intentioned, but if he’s not a good caregiver, it can have negative consequences for both of you. It’s important to recognize the signs that your husband may not be up to the task and take steps to address the issue. You may need to get help.

Understanding Caregiver Roles

Not everyone has the ability to be a caregiver, much less be a good caregiver. It is much easier to be a helper. That role lasts for a little while. It will become more demanding, time-consuming, and more technical. Yes, you will have to learn new skills to do things safely.

Duties of a Good Caregiver

A good caregiver should be able to provide physical, emotional, and social support to the person they are caring for. Some of the duties of a good caregiver include:

  • Assisting with personal care, such as bathing, grooming, and dressing
  • Helping with mobility and transferring
  • Administering medications and managing medical appointments
  • Preparing meals and ensuring proper nutrition
  • Providing companionship and emotional support
  • Keeping the home clean and safe
  • Monitoring and reporting any changes in health or behavior
  • Advocating for the person they are caring for

As a caregiver, it is important to prioritize the needs of the person you are caring for and provide care with respect and dignity. It is also important to communicate effectively with the person you are caring for and their healthcare team to ensure the best possible care. 

Defining Neglect in Caregiving

Neglect in caregiving can be defined as a failure to provide the necessary care and support to the person you are caring for. Neglect can take many forms, including:

  • Failure to provide adequate food, water, or medication
  • Failure to provide proper hygiene and personal care
  • Failure to provide a safe and clean-living environment
  • Failure to provide emotional support and companionship

Neglect can have serious consequences for the person you are caring for, including physical harm, emotional distress, and a decline in overall health. As a caregiver, it is important to recognize the signs of neglect and take steps to prevent it from happening.

Communicating with Your Husband

As a care receiver, it’s important to communicate with your husband about your concerns and expectations. This will help ensure that you’re both on the same page and working together to provide the best possible care. Some of you will need to learn to be better communicators. If emotions are high and tense, it will be better to set a time to have a discussion when all involved are able to maintain their composure while tackling the issue at hand. Yes, I said issue, singular. Let’s have one thing at a time to handle. Just because your husband is the primary caregiver does not mean that he is your only care giver.

Expressing Your Concerns

It’s important to express your concerns to your husband in a clear and respectful manner. Start by identifying specific issues that you’re having and how they’re impacting your day-to-day needs.  Understand that your husband or partner may be feeling overwhelmed or stressed out, or maybe struggling to balance caregiving with other responsibilities. Caring for someone is hard. Receiving care is hard, too.

When you’re talking to your husband, try to use “I” statements instead of “you” statements. This will help avoid blame and keep the conversation focused on your feelings and needs. For example, instead of saying “You’re not doing enough to help,” you could say “I’m feeling overwhelmed and could use some more support.” No one is a mind reader and both of you need to be clear and concise when talking to each other.

Setting Expectations

It’s also important to set expectations with your husband about what you need from him as a caregiver. This may include specific tasks that he can help with, such as preparing meals or assisting with bathing and dressing. As the care receiver, it is of utmost importance that you do everything that you can to maintain your own independence. You may also need to discuss boundaries and how you can respect each other’s needs and preferences.

When setting expectations, be clear and specific about what you need, what your care needs are, and why it’s important. You may also want to discuss how you can work together to problem-solve and find solutions when issues arise.

Remember, communication is key when it comes to caregiving. By expressing your concerns and setting expectations with your husband, you can work together to find doable and workable solutions. 

Seeking Professional Help

If you have come to the realization that your husband is not a good caregiver for you or your loved one, it is important to seek professional help. Here are a few options to consider:

Consulting a Therapist

A therapist can provide you with a safe and confidential space to express your feelings and concerns about your husband’s caregiving abilities. They can help you work through any emotional challenges you may be facing and provide you with coping strategies to deal with the situation. A therapist can also help you and your husband work through any communication issues that may be contributing to the problem. I highly recommend talk therapy.

Reaching Out to Support Groups

Joining a support group can provide you with a sense of community and understanding. You can connect with other caregivers who may be going through similar situations and share your experiences. Support groups can also provide you with valuable resources and information on how to best care for your loved one.

It is important to remember that seeking professional help does not mean that you are giving up on your husband or your relationship. It simply means that you are taking steps to ensure that you and your loved one receive the best care possible. Don’t wait until it is too late and everyone has hurt feelings and is madder than dammit. You may wind up in divorce court.

Self-Care for You

Being a caregiver can be a challenging and stressful experience. It’s important to remember that taking care of yourself is just as important as taking care of your wife. In this section, we will discuss some self-care tips that can help you manage stress and find personal support.

Managing Stress

  • Take breaks: Make sure to take breaks throughout the day to do something you enjoy, like reading a book or taking a walk.
  • Practice relaxation techniques: Deep breathing, meditation, and yoga are all great ways to reduce stress.
  • Get enough sleep: Make sure to get enough sleep each night to help you feel rested and refreshed.
  • Exercise: Regular exercise can help reduce stress and improve your overall health.

Finding Personal Support

It’s important to have a support system in place to help you through the challenges of caregiving. Here are some ways to find personal support:

  • Join a support group: Joining a support group for caregivers can be a great way to connect with others who are going through similar experiences. There are some men-only groups in Knoxville and Maryville
  • Talk to a friend or family member: Talking to a friend or family member about your feelings can help you feel less alone.
  • Seek professional help: If you’re feeling overwhelmed, consider talking to a therapist or counselor.

Remember, taking care of yourself is just as important as taking care of your wife. By managing stress and finding personal support, you can better care for yourself and your wife.

Legal Considerations

If you are in a situation where your husband is not able to provide adequate care, it’s important to understand your legal rights and options. In this section, we will cover two main sub-sections: Understanding Your Rights and Considering Legal Action.

Understanding Your Rights

As a caregiver, you have certain rights that are protected by law. These rights include:

  • The right to access information about your loved one’s medical condition and treatment options.
  • The right to make decisions about your loved one’s medical care, as long as they are unable to make those decisions for themselves.
  • The right to be involved in the development of your loved one’s care plan.
  • The right to receive support and training to help you provide care.

It’s important to understand these rights and how they apply to your situation. If you feel that your rights are being violated, it may be necessary to take legal action.

Considering Legal Action

If you are considering legal action, there are a few things to keep in mind. First, it’s important to gather evidence to support your case. This may include medical records, witness statements, and other documentation.

Second, you should consider working with an attorney who has experience in elder law and caregiving issues. An attorney can help you understand your legal options and guide you through the process.

Legal action can be a difficult and stressful process, but it may be necessary to protect your rights and the rights of your loved one. If you are considering legal action, it’s important to weigh the potential benefits and risks carefully.

Conclusion

In conclusion, being a spousal caregiver can be a challenging and overwhelming experience. It is important to recognize when the caregiving responsibilities are becoming too risky and you need to seek outside help. Signs of caregiver strain can include physical symptoms like headaches, body aches, and abdominal discomfort, as well as feeling isolated from friends and family.

It is also important to remember that being a caregiver does not mean that you have to do everything alone. You can ask for help from family members, friends, or professional caregivers. Don’t be afraid to reach out for support when you need it.

If you are feeling resentful or overwhelmed by your caregiving responsibilities, it is important to address these feelings and find ways to cope. This may include taking breaks, practicing self-care, and seeking counseling or therapy.

Remember that being a spousal caregiver is not easy, and it is okay to feel frustrated or overwhelmed at times. But with the right support and resources, you can continue to provide care for your loved one while also taking care of yourself.

How to Be a Good Caregiver to Your Partner

Your partner needs a care partner or a caregiver. That means that they need some help with activities of daily living (ADL’s) or instrumental activities of daily living (IADL’s). You may not have ever heard these phrases before, but you do know what they are. ADL’s are basic self-care tasks (bathing, dressing, feeding, walking, toileting, transferring). IADL’s are things that require more complex thinking skills and organizational skills (managing medications, managing finances, managing telephone and mail, managing transportation, managing shopping and meal preparation, cleaning the house, and home maintenance).

It may only be for a short time, but it can be for a long time. To make this time easier for all involved, it is necessary to know each other’s preferences and how we like things done. I would bet that you do not know your partner’s exact daily routine. If you want to get people all out of sorts, then do things as you do and not as they do. Talk about resistance, having a fight, and other unpleasant things… it will happen.

We are creatures of habit, our own habits or ways of doing things. We have done them since we were little; it is second nature. We don’t even think about it, because it is so routine. This is one reason why habits are good. Once we learn them, we no longer have to use brain energy to do them.

How do you put on your jacket? How do you put on your underwear, pants, socks, shirt, shoes, and belt? Which arm do you put in first? In what order do you get dressed? When do you brush your teeth? Now that you have thought about how you do those things, I want you to mess up the order and put the opposite arm or leg into the appropriate clothing. Don’t just think about it, actually do it. How did that make you feel? Did it throw you off, a little? Did you feel weird or anxious?

Now, imagine that someone was helping you to get dressed and they did it their way, which is the opposite of the way you do it. They are forcing you to do it their way and they don’t even know it. Nor do they know that it is aggravating you. Hell, you didn’t know it was aggravating you until you experienced it. I have created a Word document to help you and your loved one to check off and write down your preferences. Take a look at it and use it.

My Way Click on the link to view and download sheets to use.

To be an effective caregiver, you must understand your partner’s needs and provide the right level of care. This includes managing their medical needs, providing emotional support, and ensuring personal care. Effective communication is also essential, as it helps you to understand your partner’s needs and helps them to feel heard and valued. Maintaining a healthy lifestyle is also important, as it helps you to stay physically and mentally fit, which is crucial when caring for someone else. If you are not able to be the primary caregiver because you are no longer able to be a caregiver, who will take care of both of you?

Understanding Your Partner’s Needs

Don’t assume that you know what they want or need. Ask them and watch your tone. Are you able to be a helper at this moment or do you need a break? You have to find a way to communicate and understand what is needed and wanted.

1. Listen to Your Partner

Communication is the key to understanding your partner’s needs. Listen to your partner carefully, and try to understand what they are saying. Encourage them to express their feelings and needs. Be patient and empathetic while listening to them. Avoid interrupting them or dismissing their feelings.

2. Observe Your Partner

Observing your partner’s behavior can help you understand their needs better. Pay attention to their body language and facial expressions. Notice any changes in their behavior or mood. These observations can help you identify their needs and provide appropriate care.

3. Be Flexible

Being a caregiver requires flexibility. You may need to adjust your schedule or routine to accommodate your partner’s needs. Be open to change and willing to adapt to new situations. Flexibility can help you provide the best care possible while maintaining a healthy relationship with your partner.

4. Provide Emotional Support

Caregiving can be emotionally draining for both you and your partner. Providing emotional support can help alleviate stress and improve your partner’s well-being. Be a good listener, offer words of encouragement, and provide reassurance when needed.

5. Respect Your Partner’s Independence

Your partner may want to maintain some level of independence, even if they need your help. Respect their wishes and avoid being overprotective. Encourage them to do things on their own when possible. This approach can help your partner maintain their dignity and sense of self-worth. Yes, it will probably take longer, but that is okay. You want them to have as much independence as possible and they need that too.

Being respectful also helps strengthen your bond and improves your relationship.

Effective Communication

Effective communication is essential for being a good caregiver to your partner. Here are some tips to help you communicate better:

  • Be clear and concise: It’s important to be clear and concise when communicating with your partner. Avoid using long, complicated sentences or jargon that they may not understand. Speak in a calm and reassuring manner, and try to avoid raising your voice or using a confrontational tone.
  • Listen actively: Active listening means paying attention to what your partner is saying, and responding in a way that shows you understand and care. Try to avoid interrupting or finishing their sentences, and ask clarifying questions if you’re not sure what they mean.
  • Use “I” statements: Using “I” statements can be a more effective way to communicate than using “you” statements. For example, instead of saying “You’re not doing this right,” say “I’m feeling a little overwhelmed right now, could you help me with this?”
  • Be patient: Being a caregiver can be stressful and challenging, and it’s important to be patient with your partner. Try to avoid getting frustrated or angry if they don’t understand something or if they’re having a bad day. Remember that they are going through a difficult time too.
  • Be respectful: Respect is key to any good relationship, and it’s especially important when you’re caring for someone else. Treat your partner with kindness and compassion, and try to avoid criticizing or belittling them.

By following these tips, you can improve your communication with your partner and strengthen your relationship as a caregiver and care recipient.

Maintaining a Healthy Lifestyle

As a caregiver for your partner, it’s important to prioritize your own health and well-being. Maintaining a healthy lifestyle can help you stay energized and focused, which in turn can help you provide better care for your loved one. Here are some tips for balancing your diet and encouraging exercise:

Balancing Diet

Eating a balanced diet can help you maintain your energy levels and avoid health problems. As a caregiver, it’s easy to fall into the trap of relying on fast food or skipping meals altogether. However, taking the time to plan and prepare healthy meals can help you feel better and stay focused. Good nutrition gives you energy. Giving your body what it needs will help you to feel better and actually be better.

Consider the following tips for balancing your diet:

  • Plan ahead: Take some time each week to plan out your meals and snacks. This can help you avoid impulse purchases and ensure that you have healthy options on hand.
  • Focus on whole foods: Try to eat a variety of fruits, vegetables, whole grains, and lean proteins. These foods can provide the nutrients and energy your body needs to function at its best.
  • Avoid processed foods: Processed foods are often high in sugar, salt, and unhealthy fats. Try to limit your intake of these foods and focus on whole, unprocessed options instead.
  • Stay hydrated: Drinking enough water can help you stay alert and focused. Aim for at least eight glasses of water per day. Help your care receiver to stay hydrated too.

Encouraging Exercise

Regular exercise can help you maintain your physical and mental health. It can also help you manage stress and improve your mood. As a caregiver, it’s important to make time for exercise, even if it’s just a few minutes each day. Even 10 minute blocks can help.

Consider the following tips for encouraging exercise:

  • Find activities you enjoy: Exercise doesn’t have to be a chore. Find activities that you enjoy, such as walking, swimming, yoga, or gardening.
  • Make it a priority: Schedule time for exercise each day, even if it’s just a few minutes. This can help you stay motivated and make exercise a habit. Develop that good habit.
  • Involve your partner: If your partner is able, consider involving them in your exercise routine. This can be a great way to spend quality time together while also staying active.
  • Start small: If you’re new to exercise, start small and gradually increase your activity level. This can help you avoid injury and build your confidence.

Remember, taking care of yourself is an important part of being a good caregiver. By maintaining a healthy lifestyle, you can stay energized and focused, which can help you provide better care for your partner.

Managing Medical Needs

Going to the doctor’s appointments with them, taking notes, and understanding why they are taking the medications that they are taking helps you to be an important part of your loved one’s care team. You may be responsible for giving them their medications.

Administering Medication

Administering medication can be a daunting task, but it is an essential part of caregiving. Here are some tips to make the process easier:

  • Create a schedule: Keep a schedule of when medication needs to be taken and how much. You can use a medication tracker app or a simple spreadsheet to keep track of this information.
  • Use reminders: Set reminders on your phone or use a medication dispenser to ensure that medication is taken on time.
  • Follow instructions: Make sure you understand the instructions for each medication, including how to take it and any potential side effects.
  • Store medication properly: Keep the medication in a cool, dry place, out of reach of children and pets. Do not place medication in bathrooms or other hot and humid areas.

Attending Medical Appointments

Attending medical appointments is an important part of managing your partner’s medical needs. Here are some tips to make the process easier:

  • Prepare for the appointment: Write down any questions or concerns you have before the appointment. Bring a list of medications and any relevant medical history.
  • Take notes: During the appointment, take notes on what the doctor says and any instructions they give you.
  • Ask questions: Don’t be afraid to ask questions if you don’t understand something. It’s important to have a clear understanding of your partner’s medical condition and treatment plan.
  • Follow up: After the appointment, follow up with any instructions or referrals the doctor gave you. Keep track of any follow-up appointments or tests that need to be scheduled.

Managing medical needs can be overwhelming, but by following these tips, you can ensure that your partner receives the best possible care.

Providing Emotional Support

Emotional support may not be something that you are good at, but you can learn and be very effective. You can help your loved one to feel loved and cared for. If you have been a manager before, then you have learned some of these techniques and now you can apply what you have learned at home.

  • Listen actively: When your partner is sharing their thoughts and feelings with you, make sure to listen actively. This means giving them your full attention, asking clarifying questions, and reflecting back on what you hear to show that you understand.
  • Offer validation: It’s important to validate your partner’s emotions, even if you don’t necessarily agree with them. Let them know that you understand how they’re feeling and that their emotions are valid.
  • Be patient: Providing emotional support can sometimes be a long and difficult process. Be patient with your partner and offer them your support over time.
  • Offer words of encouragement: Let your partner know that you believe in them and that you’re proud of them. Offer words of encouragement when they’re feeling down or struggling with something.
  • Help them stay positive: Encourage your partner to focus on the positive aspects of their life, even when things are tough. Help them to see the good in every situation.
  • Be empathetic: Try to put yourself in your partner’s shoes and understand what they’re going through. This will help you to provide more meaningful emotional support.

Providing emotional support can be a powerful way to show your partner that you care about them and are committed to their well-being. By listening actively, offering validation, being patient, offering words of encouragement, helping them stay positive, and being empathetic, you can make a real difference in your partner’s life. If you or your partner need a vent session, that is fine. Set the timer to 10 to 15 minutes and vent away. When the timer goes off, then the vent session is over. Start focusing on solutions and not the problems.

Ensuring Personal Care

Taking care of your partner’s personal hygiene and mobility can be an essential part of caregiving. Here are some tips to ensure your partner’s personal care:

Assisting with Personal Hygiene

It is embarrassing to ask your partner to help wipe your butt. Personal hygiene is a sensitive topic, but a necessary one. It does help to look at it as a job and to use gloves when providing this type of care. Using gloves seems to help differentiate between a job needed to be done and a physical, personal touch. Maintain dignity.

  • Encourage your partner to maintain their regular hygiene routine.
  • Assist your partner with bathing, grooming, and dressing as needed.
  • Help your partner with toileting and incontinence care if necessary.
  • Ensure your partner’s bedding and clothing are clean and changed regularly.

Helping with Mobility

Mobility is another critical aspect of personal care. Here are some ways to assist your partner with mobility:

  • Help your partner with transferring in and out of bed or chairs. Get yourself properly trained on how to do this safely.
  • Assist your partner with walking and getting around as needed.
  • Make sure your partner’s living space is safe and accessible.
  • Consider using mobility aids such as walkers or canes to help your partner move around more easily.

Dealing with Stress and Burnout

As a caregiver to your partner, it is essential to take care of yourself and manage stress and burnout. Here are some tips to help you deal with caregiver stress:

Take breaks

Taking breaks is crucial to avoid burnout. It is essential to take some time for yourself to relax, recharge, and do things you enjoy. Consider asking a family member or a friend to help you take care of your partner for a few hours or hire a respite caregiver to give you some time off.

Seek support

It is okay to ask for help and support when you need it. Join a support group for caregivers or talk to a therapist to help you cope with the challenges of caregiving. You can also seek help from community resources, such as meal delivery services or transportation services, to help ease some of your caregiving responsibilities. Hire someone to clean the house.

Practice self-care

Taking care of yourself is essential for your well-being. Make sure to eat healthy, exercise regularly, and get enough sleep. Practice relaxation techniques such as meditation, deep breathing, or yoga to help you manage stress.

Set realistic expectations

It is essential to set realistic expectations for yourself and your partner. Accept that you cannot do everything and that it is okay to ask for help. Set boundaries and prioritize your tasks to avoid feeling overwhelmed.

Know the signs of burnout

It is crucial to recognize the signs of burnout and take action to prevent it. Some signs of burnout include feeling exhausted, irritable, or overwhelmed, losing interest in activities you used to enjoy, and having trouble sleeping. If you experience any of these symptoms, seek help and take a break to prevent burnout.

By taking care of yourself and managing stress and burnout, you can be a better caregiver to your partner and provide them with the support they need. Remember, it is okay to ask for help and take breaks, and taking care of yourself is essential for your well-being.

Seeking Professional Help

Sometimes, being a caregiver can become overwhelming and stressful, and it’s okay to seek professional help. It’s important to remember that you don’t have to do everything alone, and there are people who can help you. Talk therapy can be a real help to you and your loved one.

One option is to talk to a therapist or counselor. They can provide a safe and confidential space for you to discuss your feelings and challenges. They can also help you develop coping strategies and provide emotional support.

Another option is to reach out to your partner’s doctor or neurologist. They can offer guidance on how to manage your partner’s condition and provide helpful strategies. They can also help you understand your partner’s diagnosis and what to expect in the future.

If your partner is resistant to seeking professional help, it’s important to be patient and understanding. Try to listen to their objections and concerns and address them in a calm and respectful manner. You can also share your own experiences and feelings with them and explain how seeking help can benefit both of you. If they won’t go, then you go ahead and go for yourself.

Remember, seeking professional help is not a sign of weakness. It’s a proactive step towards improving your own well-being and providing the best care for your partner.

Conclusion

Being a care partner or caregiver is a journey and not a destination. Some hours are good and some hours suck. Some days are good and some days suck. Be kind to yourself and each other.

Taming Your Defensiveness in Trying Times

Become a better listener

Defensiveness rears its ugly head when we are tired or feeling overwhelmed. Assume plays a big part in the problem. You assume that he meant, “JKL”, but he didn’t mean that at all. You assume she meant, “DEF”, but she didn’t mean that at all. As we all have learned assume makes an ass out of you (u) and me.

One person makes a statement or comment and the fight is on. Most of the time it is unintentional. There are times when it is intentional and that is a whole other article. We are going to look at the unintentional statements or comments this time.

Who are you more like in this story?

Once upon a time, there was a couple, Sarah and John, who had been together for several years. They were usually loving and understanding with each other, but like any couple, they faced challenges from time to time.

One particular week, both Sarah and John had been overwhelmed with work and personal commitments, leaving them emotionally and physically exhausted. They barely had any time to connect or relax, and this took a toll on their relationship.

One evening, after a long and draining day, Sarah arrived home feeling utterly exhausted. She longed for some peace and quiet, hoping to unwind and recharge. John, on the other hand, had also had a demanding day and was feeling no better.

As Sarah entered the house, she immediately noticed that John seemed agitated. Hoping to engage in a calm conversation, she asked how his day went. However, John, tired and overwhelmed, misunderstood her tone as accusatory and defensive.

Sensing hostility where there was none, John defensively replied, “It was a terrible day, all right? Just like every other day lately! I don’t need you to remind me of that!” Sarah, taken aback by his response, felt hurt and confused as she didn’t mean any harm with her question.

Feeling her own exhaustion kicking in, Sarah’s emotions went haywire, and instead of responding calmly, she mirrored John’s defensiveness. “Oh, so now I can’t even ask about your day without you snapping at me? I’m exhausted too, you know!” she exclaimed.

The conversation quickly turned into a heated exchange of frustrations and misunderstandings. Both Sarah and John’s exhaustion clouded their judgment, causing them to misread each other’s intentions and statements.

Realizing the escalating situation, Sarah took a deep breath and decided to break the cycle. She managed to find the strength to say, “I’m sorry; I didn’t mean to come across that way. I’m just really tired, and I thought we could share our struggles and support each other.” John, noticing Sarah’s vulnerability, softened and replied, “I’m sorry too. I misinterpreted your question, and I know we’re both feeling drained.”

They sat down together, allowing their exhaustion to be acknowledged. Both Sarah and John understood that it was their mutual tiredness and stress that had led to the misunderstanding. They realized it was essential to give each other space to decompress and be patient during challenging times.

From that day forward, Sarah and John made a commitment to communicate openly about their exhaustion levels and provide each other with the understanding and support they needed. They recognized the importance of approaching conversations with empathy, especially when both parties were drained.

Over time, as Sarah and John prioritized rest and relaxation, they found that their misunderstandings became fewer and farther between. They learned to be more patient with themselves and each other, ultimately strengthening their bond. The story of their exhaustion-induced misunderstanding became a valuable lesson in the power of empathy and self-care within a relationship.

Who did you most relate to?

Everything was pretty spot on until you reached the paragraph that began with “Realizing the escalating situation, …” You know as well as I know that Sarah did not take a deep breath and decide to break the cycle and John did not settle down or try to understand what was really going on. The things in those last four paragraphs are what we need to learn and work on to be more effective communicators.

Why do people become defensive?

People become defensive for various reasons, and it is a natural human response when they feel attacked, criticized, or feel the need to protect themselves or their beliefs. Some common reasons why people become defensive include:

  1. Self-preservation: When people feel their self-esteem or sense of self is being threatened, they may become defensive as a way to protect themselves from harm or emotional pain.
  2. Fear of judgment or rejection: People may fear being judged negatively by others or being rejected, so they become defensive to shield themselves from potential harm.
  3. Protecting beliefs and values: When someone’s beliefs, values, or opinions are challenged, they may become defensive in an attempt to uphold and defend their personal ideas or identity.
  4. Lack of trust: If there is a lack of trust or a history of feeling attacked in a particular relationship or situation, individuals may become defensive as a way to safeguard themselves from further harm or hurt.
  5. Misunderstood intentions: Sometimes people misinterpret or misjudge the intentions of others, leading them to become defensive even if the intention was not to attack or criticize.
  6. Emotional triggers: Certain topics or issues can trigger emotional responses in individuals, leading them to become defensive as a way to manage or cope with these strong emotions.

It’s important to note that defensiveness can hinder effective communication and understanding, so it is often beneficial to approach conversations with empathy, respect, and an open mind to reduce defensiveness and encourage constructive dialogue.

How you can diffuse defensiveness and keep the conversation from spiraling out of control

  1. Choose your words carefully: Use non-judgmental and non-confrontational language when expressing your thoughts or concerns. Avoid accusatory language that might trigger defensiveness in the other person.
  2. Be empathetic: Try to understand the emotions and perspectives of the person you are communicating with. Show empathy by acknowledging their feelings and concerns, which can help create a more receptive environment. You don’t have to agree with them, but you do need to understand them.
  3. Use “I” statements: Instead of making generalizations or criticizing the other person, focus on expressing your own feelings and thoughts using statements like “I feel” or “I think.” This helps to avoid a defensive reaction since it doesn’t put blame directly on them.
  4. Active listening: Show genuine interest in what the other person is saying. Give them your full attention, maintain eye contact, and make clarifying statements or ask open-ended questions to demonstrate understanding. This can help the person feel heard and valued, reducing defensiveness.
  5. Avoid personal attacks: Stick to the issue at hand and avoid attacking or criticizing the person directly. Focus on discussing the problem or situation without resorting to personal insults or negative language.
  6. Find common ground: Look for areas of agreement or common interests to create a sense of collaboration. By finding shared goals or values, you can shift the conversation to a more cooperative and less defensive tone.
  7. Take breaks if necessary: If the conversation becomes heated or unproductive, it’s okay to take a break and revisit the discussion later when both parties are calmer and more open to dialogue.

Remember, diffusing defensiveness requires patience, understanding, and a willingness to listen and find common ground. It may not work in every situation, but employing these strategies can help create a more constructive and open conversation.

How to become more open-minded

Having an open mind is a valuable quality that can help you grow personally and improve your relationships with others. Here are some steps you can take to develop a more open mind:

  1. Embrace curiosity: Be curious about different perspectives, ideas, cultures, and experiences. Instead of dismissing or judging something, approach it with curiosity and a desire to understand.
  2. Practice empathy: Put yourself in others’ shoes and try to understand their point of view. This can help you become more tolerant and accepting of different opinions, beliefs, and lifestyles.
  3. Challenge your assumptions: Question your own biases and beliefs. Reflect upon why you hold certain opinions and be open to the possibility that they may be based on limited information or personal experiences.
  4. Seek out diverse perspectives: Surround yourself with people who have different backgrounds, thoughts, and beliefs. Engage in discussions with them and be open to learning from their experiences.
  5. Explore new ideas and experiences: Read books, watch documentaries, listen to podcasts, or attend events that expose you to new ideas and perspectives. Step out of your comfort zone and try new activities that push you to think differently.
  6. Stay open to learning: Cultivate a growth mindset and see every experience as an opportunity to learn and grow. Be willing to admit when you’re wrong and adjust your thinking accordingly.
  7. Practice active listening: Focus on fully understanding what others are saying rather than just waiting for your turn to speak. Ask questions and engage in meaningful conversations to gain different insights.
  8. Let go of judgment: Avoid jumping to conclusions or making assumptions about people or situations. Instead, approach them with an open and non-judgmental mindset.
  9. Embrace uncertainty: Realize that there is often more than one way to approach a situation or solve a problem. Be comfortable with ambiguity and be open to exploring different possibilities.
  10. Be patient with yourself: Developing an open mind is a continuous process. It takes time and effort. Be patient with yourself and celebrate small progress along the way.

Becoming more open-minded doesn’t mean you get rid of all of your beliefs; it means learning why you believe what you believe. Challenging your beliefs, thoughts, and feelings is a good thing. You learn what you value. You can actually learn what you believe and not what someone else told you to believe. You may have been taught things that are not true. Challenge your biases. Learning and growing is a good thing. Being able to change your mind is a good thing.

What is the common denominator in folks diagnosed with any of the following?

Stroke, Multiple Sclerosis (MS), Parkinson’s disease, Alzheimer’s disease, Post Traumatic Stress Disorder (PTSD), Traumatic Brain Injury (TBI), Dementia, Epilepsy, Diabetes, & Mental Health disorders

They will need a Care Partner or Caregiver.

What is the difference between a Care Partner and a Caregiver?

Some of you may have never heard the phrase “Care Partner” and are wondering what is the difference between that and a caregiver. A caregiver does things “To” the care receiver and a care partner does things” With” the care receiver. For example, a caregiver may take the spoon and feed the care receiver while the care partner will place their hand under the care receiver’s hand and assists.

Care partners assist with the care while encouraging the person to do all they can do. Yes, it will take longer. Yes, it will probably be messier. Your care receiver needs those successes. They still need to feel useful. They want to contribute, in some way. They want to be as independent as possible and their dignity deserves it.

Are You a Care Partner or a Caregiver?

Quite a few folks never identify as a caregiver or a care partner. They view it as “helping them out.” Taking them to the doctor or to the store is another act of caregiving that is never thought of as caregiving.

Family members, take a look at your role in your care receiver’s life. Is it better for them and you to be a caregiver or a care partner, at this time in your journey? Over time things will change, but right now, what is best? I use both terms interchangeably and am learning that it would be better to use both terms correctly and speak to both the caregiver and the care partner.

I recently saw a new phrase, “Chronic condition care” and I kind of like that, too. We can call it all kinds of things, but we are stuck until the folks providing the help and care identify with those phrases. I look at folks and see that they are clearly Care partners or caregivers, but they never think of themselves that way. Why?

I suppose some think of it as a natural or normal part of the relationship. Some look at it as “just something you do.” Others may fear that if they use the term caregiver, they will have to step up even more and don’t want to do that.

What if you would try the care partnership model first, to improve your loved one’s quality of life? Your role as a care partner may change, over time, but take time to connect with your loved one as you figure out a treatment plan and medication that may help. Strengthen your relationship with your loved one. Communicate what you are feeling (stress and anxiety, fatigue, fear, and whatever else comes up) with your loved one. Too often we clam up and go into protective or preservation mode because of the unknowns. The walls go up and the communication goes way down. Let’s try to reverse this.

If you take on these responsibilities, you are a care partner or caregiver.

If you “help with”, “coordinate care for”, “make appointments for and get them there”, or “see to the care of” …you are a care partner and are probably a caregiver. Yes, even if you don’t do the “hands-on” care. It seems as though the Parkinson’s world has tapped into this Care partner idea much better than the rest of us. Family members and friends can be great Care partners.

Becoming a Care Partner or a Caregiver is a change and sometimes, you don’t want that so you won’t identify with those terms. You are afraid your identity may have to change and you don’t want that. You will help out. What you don’t realize is you are missing out on all of the help available to you and your loved one. It is difficult enough without you making it more difficult.

Being a care partner or a caregiver is hard, but it is not always bad. You don’t have to suffer, hell you can even thrive with the right guidance. Email me and we will set a time to chat and see.

pat@EmpoweringHealthOptions.com

Interesting Read Below:

I saw this on Eurocare and would like to share it with you, The Stages of Caregiving. Read it and see where you are in your journey.

Stage 1: The Expectant Carer

Who are you?

You have a growing concern that, within the near future, your family member or friend will need more and more of your assistance and time. You’re concerned because of your relative’s age, past and present medical condition, and current living condition.

Your keyword: Ask

–Ask questions of your caree.
–Ask questions of health care professionals.
–Ask questions of lawyers and financial planners.
–Ask questions of your family members who may be involved in the caregiving role.

Your Challenge

To learn and understand your caree’s needs: health, financial and emotional.

Your Purpose

You expect to become a family carer; this is your time to prepare. You should research options, gather information, and provide the opportunity for your caree to share his or her feelings and values. This is also your time to concentrate on taking care of yourself–keeping up with family and friends, enjoying your hobbies and interests, pursuing your career goals.

As an “expectant carer,” what can you do?

1. Consult with a good lawyer familiar with eldercare issues. Find out about durable powers of attorney for finances and health care as well as living wills; start the process to ensure your caree has the necessary legal papers in order. Ask the attorney: What do we need to know to be prepared for the future? What additional documents will we need? What should we keep in mind? (A durable power of attorney for finances and health care appoints an agent to make decisions on behalf of your caree when he or she is unable to. If you live in one state and your caree in another, consider having documents created for both states)

2. Determine financial situations. Knowing the financial status of your caree can help determine future health care choices. Determine monthly income from pensions and social security; learn about annuities, stock investments and bank accounts. Meet with financial planners to understand how to ensure investments last as long as possible.

3. Investigate community health care options. Which home health care agencies offer quality, affordable home care? Which housing options are available–retirement communities, assisted living centers? Contact community organizations to request brochures and pamphlets. In addition, consider your family member’s current living condition. Will your aging relative be able to reside safely in her home if she uses a wheelchair, becomes bed-bound? What changes can you make today that will prevent future barriers to providing care in her home? Or, are the necessary changes almost an impossibility? If so, what other options do you have: your home, an assisted living facility, a retirement community?

4. Determine the current health care providers. Be familiar with physicians and learn as much as you can about medications.

5. Concentrate on the reality of the situations. Keep a realistic view of your situation: What’s the worst that could happen? What’s the best possible outcome? Then, determine what options are available for each of these outcomes.

6. Start a journal; chronicle your feelings, your concerns and your actions. You may be surprised at feelings of loss. Your preparation of the future allows you to see what your caree–and you–might lose. You both will experience changes in your relationship, your schedules, your amount of freedom. Write down your thoughts about the potential losses–and how you might be able to hang on to them, through minor adjustments and changes, for a little longer.

7. Take time to sort out your own issues. It’s easy to overlook these issues when life seems easy. Caregiving, especially as it intensifies, will make life hard. And, it’s harder if you have unresolved emotional work as it relates to your caree or other family members. If you have difficulty standing up for yourself or finding your voice, this is a good time to work with a therapist or life coach to gain confidence in your decisions and your voice. Do you struggle with the idea of asking for help? Now is a good time to figure out why and start practicing. Knowing how and when to ask for help is a great skill, which will become a huge asset for you. “The Four Agreements, A Practical Guide to Personal Freedom,” a book by Don Miguel Ruiz, offers insights about our personal codes of conduct. As your caregiving journey continues, you’ll interact with family, friends and health care professionals who will drive you nuts. This book will give you the tools so you can stay sane.

8. Find your best shape–physically and financially. Find a work-out routine you like. Maximize the amount of healthy foods you eat. Pay off your debts. Save as much as you can. Uncomfortable managing money? Read books and take  classes (online and in your community) to become comfortable. You’ll need to be at your best—physically, emotionally and financially

9. Learn your caree’s life story. Document the story in a journal, video or audio recording. Collect recipes, photos, letters, poems and records that reflect your caree’s life and achievements. Ask questions about your caree’s childhood, parents, siblings and first loves. Involve other family members, including children, in the discussions.

10. Begin each day with the knowledge that you have love. Perhaps the toughest battles in caregiving begin within. Most battles really are about whether or not you are loved—by your caree, by other family members, by friends, by your significant other. End the battle now: Know you have the love. Know it now so you can remind yourself later.

11. An apple a day… What can you do on a regular basis to keep yourself healthy? Be good to yourself—you are too important today (and tomorrow and every day after that) to let your own health slip. In other words, what’s your apple?

Quick Tip: Organize forms and documents that you’ll need in the future.  

Stage 2: The Freshman Carer

Who are you?

You’ve begun to help your family member on a regular basis, weekly, perhaps even a few times a week. Your duties range from errand-running and bill-paying to some assistance with hands-on care.

Your keyword: Find

–Find services that help. –Find support that comforts. –Find ways to enjoy your hobbies and interest.

Your Challenge

To discover solutions that work.

Your Purpose

This is your entry into the caregiving role. This is your time to experiment, to get your feet wet and see what works. This is your opportunity to learn how the health care industry works with, or in some cases, against you. Now is the time to shape your caregiving personality: What duties are you comfortable with? What duties make you uncomfortable? How well are you and your caree getting along? What situations would create overwhelming stresses for both of you?

This is also the time when you get a feel for the present and future budgets needed to provide the care your caree requires.

In addition, keep up with your hobbies and interests (you may be able only to keep the ones that you enjoy most), ensuring you have made a habit of spending time on your own, enjoying yourself.

As a “freshman carer,” what can you do?

1. Learn as much as you can about your caree’s illness, disease or condition. Consult the local branches or chapters of national organizations such as The Arthritis Foundation, the Alzheimer’s Association, The Cancer Society. What does the future hold for you and your caree?

2. Learn how to provide proper care from health care professionals or from health care videos, manuals or books. If your caree is hospitalized or receives short-term therapy at a nursing home, ask the staff to show you proper caregiving techniques: lifting, transfers, bathing. Or, search the Internet for hands-on care information.

It’s very difficult to provide care when you are unsure of what you’re doing. You’ll feel much better when you’re confident of your skills.

3. Join a support group–online or in your community. It’s so isolating to be a carer! Support groups will hook you up with others in similar situations; often, you’ll learn of community resources and options from other carers that you were not aware of.

4. Count on regular breaks from caregiving. Plan for regular breaks–an hour daily, an afternoon weekly, or a day monthly–whatever you can manage. Enlist the help of relatives and community services (such as a volunteer group at your local church) so you can take time off regularly. Relatives can help in many ways–through financial support, social support (calling the caree regularly just “to talk”) as well as respite support.

5. Rely on help from community organizations. Meals on Wheels, home care agencies and day care centers, to name just a few, may offer services that your caree needs.

Contact your local Area Agency on Aging for a listing of services and organizations in your community. Visit your local medical equipment supply store to find devices and gadgets that enhance your caree’s abilities–and independence from you. Remember, allowing the help of others is a sign of strength.

In addition, ask about local, state or federal programs that might provide financial assistance for you and/or your caree. As your caree’s care needs increase, so will the costs associated with his or her care. Understanding what programs can help, in addition to understanding what your caree can afford, will help you plan appropriately for the future.

6. Keep your caree’s wishes in mind. If appropriate, ask for his or her input and ideas. Does your caree still feel good about living at home? What does your caree fear or dread? (These are also good questions to ask yourself!)

7. Reflect the changes in your journal. How do you feel now? What are your concerns? Fears? What outcomes are you working toward? What losses have you noticed during this period? What changes in the relationship cause you to feel sad? What changes have given you comfort?

8. Start a second journal that you use to detail your caree’s needs and your caregiving responsibilities. Note any changes in your caree’s health and condition so that you can confidently discuss your concerns during physician appointments. Use your journal as a caregiving manual, which will help when others step in to provide care. Continue to chronicle your caregiving journey in your first journal. What causes you to mourn?

9. Create the habit of regularly holding family meetings. And, if you and your caree share a household with other family members (including children), consider creating House Rules. Rules for the household include:

–Who does what, how and when; –Guidelines for fights, fun, and festivals (celebrations); –Schedule of meetings and their purposes; –Expectations in regard to support, engagement and participation.

10. Manage the money: Develop a budget, keep track of expenses, set up a filing system for bills and receipts. Keep your caree’s expenses separate from yours and your family’s. Keep track (and receipts) of any of your caree’s bills that you pay. If you’re overwhelmed, consider having a professional, like a financial planner or bank trust officer, oversee your caree’s financial situation, including paying bills.

11. Start a Solutions Fund so you can hire solutions. The account funds solutions for boredom, breaks and back-up plans. Contribute a monthly amount; allow yourself flexibility in how you use the monthly budget. Use the fund for your caree, for the house, for you.

Use the Solutions Fund for your caree to hire services such as home health, adult day or to purchase games.

Use the fund for your house (or your caree’s) to hire cleaning service, lawn maintenance, snow removal. The fund buys you services from a counselor or life coach, or for pampering services, adult education classes and activities.

Ask family members to contribute to your Solutions Fund.

12. Have back-up plans and then back-up plans for your back-up plan. Ask yourself, “What if…” and then create a plan to manage the “What if’s.” If it can happen, most likely it will. Be ready with a plan. A geriatric care manager can be invaluable in developing your back-up plans.

13. Build your own paradise of privacy. Call a spare bedroom or a corner in the basement your own. Add your favorite things (books, chocolate, candles, scrapbook, journal, music, TV, videos, photography, family photos) to make the space a retreat you love to use.

14. Continue to maintain your healthy lifestyle. Take note when the stress causes too much comfort food or too few walks. One of your best defenses against the impact of stress is a healthy lifestyle.

15. An apple a day… What’s your apple in this stage? What helps you to feel good on a daily basis? Enjoy your apple every day.

Stage 3: The Entrenched Carer

Who are you?

Your involvement with your caree is almost daily–if not constant. Your caree may live with you–or your involvement means that your day is structured to be available to your caree. You begin to wonder, how much longer can you live this way? Your mood is sometimes upbeat–you’re proud you’ve been able to provide such wonderful care and make decisions that support your caree’s best wishes–and sometimes melancholy–why you? You’ve been mourning the loss of your caree’s abilities and functions and often long for the days before caregiving. And, you’re tired.

Your Keyword: Receive

–Receive help–from anyone who offers; –Receive breaks from caregiving; –Receive support.

Your Challenge

To find the support and strength to continue.

Your Purpose

To develop a routine, create a familiar schedule for both yourself and your caree. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your caree–this stage may be the most difficult for both of you. The changes you prepared for in Stage I and II are now a reality–you have become something of a lifeline to a family member or friend.

In addition to your caree’s routine of care, create a routine for yourself. In your routine include: Time for the unexpected; a ritual which begins and ends your day; and a “healthness” activity that nurtures your spiritual, emotional, physical, mental needs.

As an “entrenched carer,” what can you do?

1. Determine your limits in your day and in your role. How long can your caree remain at home? What’s your comfort level in providing care in your home? For instance, some family carers feel uncomfortable providing care when their caree becomes incontinent. Others determine they can provide care at home as long as insurance or Medicare benefits offset some of the home care expenses. Others feel they can provide care as long as their other family members, like spouses and adult children, will put up with it.

Just as important as understanding your limits in your role is recognizing your limits during your day. Consider:

–Which tasks and responsibilities feel like a struggle? –What times during the day do you feel the greatest amount of stress? –When do you find yourself running late, losing your temper, scrambling for a solution? –What do you find yourself dreading or hating? –When do you find yourself in a tug-of-war with your caree? –What times of the day are tough for your caree? –When during the day does your worry about your caree intensify?

When you understand your limits, you can look for help to manage what’s beyond your limits. Understanding your limits will ensure you, your caree and your family will stay in a safe place.

Everyone has limits. What are yours?

2. What are your caree’s limits? Understanding your caree’s limits will help schedule your day and organize your help. Limits will change regularly, so be aware of change in tolerance and fatigue. Not sure how much help to schedule? Add more than you think. You can never have too much.

3. Continue regular breaks. Consider annual weekly breaks–investigate short-term respite stays in your community’s nursing homes. Or, ask relatives to take over the caregiving role for a week or two every year or every two years. Continue to take daily, weekly and monthly breaks. Keep up with your own interests and hobbies as best you can. Take time to enjoy the paradise you built in Stage II.

4. Use your Solutions Fund. Make deposits and take withdrawals, using the money for boredom, breaks and back-up plans.

5. Keep up with a support system–a carer’s support group or empathetic and understand family members or friends.

6. Continue to learn about your caree’s illness or condition. What’s next for your caree? Are you up to the next steps in his or her illness?

7. Increase help as your caree declines. Become comfortable with adding more help as more help is needed. You may think, “I’m okay keeping the level of help as it is.” Unfortunately, keeping the level where your caree was rather than where he or she is will hurt both of you. Note the struggles in the day, then work to add help for you and your caree to manage the struggles.

8. Manage the budget as much as you manage the care. As care needs increase, so does the budget. When you caree has funds to pay for about 18 months in a nursing home, then take note of the situation. This is the time to consider nursing home placement, when your caree’s funds will afford the best choices. Hold a family meeting, tour local facilities, consult with professionals, such as a geriatric care manager. You may decide this isn’t the time to decide. That’s okay. It’s important to be aware that sometimes the budget determines the decision on where a caree continues to receive care.

9. Continue writing in both journals—yours and the other about your caree.

10. Forgive yourself for your bad moments and bad days. They will happen. After they do, give yourself a clean slate to start over.

11. Set boundaries which protect: Your Time; Your Values; Your Well-being, Your Priorities; Your Self. Examples of communicating boundaries include:

–“I’m taking a two-hour break after lunch. I have everything that you’ll need set up in the living room. Thank you so much for helping me enjoy this time. I’m so grateful for your support.” –“I’m uncomfortable with the tone of our discussion. Let’s table our talk until tomorrow.” –“I’m booked, so can’t handle that request. Thank you for thinking of me.”

12. Give you and your caree room for your difficult moments and bad days. When you’re having a tough time, simply say: “I’m having a bad day. I’m taking a few minutes for myself.” When it’s your caree’s turn, say, “I’m sorry you’re having a bad day. I’m going to step away for a few moments.”

13. An apple a day… What’s your apple in this stage? You may feel tempted to sacrifice your apple in this stage. Your apple can’t be sacrificed. Your apple is what makes you feel normal, like yourself. Keep it.

Stage 4: The Pragmatic Carer

Who are you?

You’ve been through it all: hospital admission and discharges; short-term rehab stays in nursing homes; a vast array of community services. You may appear to doubt the advice given by health care professionals; you’ve just been through the health care system long enough to know that sometimes health care professionals may not seem to have your best interest in mind. Some family members and health care professionals worry about your ability to find humor in situations they find offensive. They view your attitude as “calloused” and “uncaring.” Far from it, you have a very practical, very realistic approach toward your caregiving role–and your sense of humor has been a critical tool for your survival. Without your sense of humor, you would have given up a long time ago.

Your Keyword: Welcome

–Welcome the joys of your relationship; –Welcome forgiveness (of yourself, of your caree, of other family members and friends); –Welcome shared activities.

Your Challenge

To gain a greater understanding of yourself and your caree.

Your Purpose

To gain a better understanding of yourself and your caree. You’ve settled into your role and your routine; now is your opportunity to step back and reflect. The first three stages laid the groundwork for this stage, your period of personal growth.

As a “pragmatic carer,” what can you do?

1. Work on finding joy in your relationship with your caree. The biggest joy-killer are your hands-on duties: bathing, dressing, incontinence care. But these duties bring you together, this is your time together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.  

2. Work on forgiving your caree for past hurts. Resentment toward past wrong and injustices will make your present caregiving role very difficult. Let go of what was and concentrate on making what is healthy and productive. Forgiving your caree is one of the best ways you take care of yourself.  

3. Develop a habit of enjoying shared activities. Develop a routine of time shared as husband-wife, mother-daughter, father-son rather than as just carer and caree. Releasing the roles of carer and caree allows you to enjoy each other.

4. Begin to think about your future. What goals have you yet to achieve? How can you achieve them? How can your caree help you achieve them?

5. An apple a day… What’s your apple in this stage? What helps you to feel good on a daily basis? You may feel like trying something new. That’s good! You can never have too many apples.

Stage 5: The Transitioning Carer

Who are you?

You’ve been caring for a period of time and now can sense the end.

Your Keyword: Allow

–Allow time to mourn and grieve; –Allow remembrances to remain; –Allow reflections of your experiences.

Your Challenge

To stop the “doing” of caregiving and focus on the “being.” You’re used to doing and going. Now, it’s time to simply be with your caree.

Your Purpose

To walk with your caree during his last months and weeks, implementing his or her decisions about end-of-life care that you both discussed during Stage 1 (or as soon as you could). As you both feel the journey end, this is also a time to mourn and grief. And, this stage is about loving and feeling good about the shared journey. You also will begin to question and worry about the next chapter in your life.

As a “transitioning carer,” what can you do?

1. Use your best judgment as to when you take breaks. You now have a limited amount of time to spend with your caree. Trust your gut and spend as much time as feels right for you. When others encourage you to take a break and you know it’s not the right time, let them know: “Time with my caree is my priority. I appreciate your concern. I’m okay.”

2. Allow yourself time to mourn and grieve. You are experiencing tremendous losses. You’ll feel it.

3. Remember your caree. You don’t have to give away clothes or remove pictures–until you want to. When family and friends seem hesitant to talk about your caree (they worry they will upset you), assure them that sharing memories, laughs and stories brings you great comfort.

4. Reflect back on your caregiving responsibilities and decisions with pride. Find comfort in knowing that you did the best you could.

5. Review your journal. How are you different today than you were on the day you first started writing in your journal? How will you use this experience to enhance your future relationships?

6. An apple a day… What’s your apple in this stage? You may feel that an apple in this stage is unnecessary. Take an apple. It’s what keeps you feeling like you. 7. After Giving. Connect with other former family carers adjusting to a life after caregiving.

Stage 6: The Godspeed Carer

Who are you?

Your role as carer ended more than two years ago. You find yourself compelled to make a difference in the lives of other carers. You share information readily with carers in the earlier stages, you start a business dedicated to helping family carers or you find a job in which you assist family carers. And, you treasure each relationship you have in your life, recognizing that each day, and your health, should never be taken for granted.

Your Keyword: Treasure

–Treasure your dreams; –Treasure your challenges which led to your opportunities and new skills; –Treasure your opportunities to share lessons learned; –Treasure memories of your caree.

Your Challenge

To integrate your former role as a carer into your new life

Your Purpose

To implement your lessons learned from your role as carer, from your caree and from your family members and friends. During this stage, which can last as long you wish, even your lifetime, you reap the benefits of your efforts.

As a “Godspeed Carer,” what can you do?

1. Follow your dreams. Make your goals a reality.

2. Family carers will look to you as a mentor and leader. Allow carers in earlier stages the same freedom to stumble and steady themselves that you had. Share your experiences with expectant carers, freshman carers, entrenched carers and pragmatic carers. They can learn from you!

3. Treasure the memories you have of your caree. Continue to remember your caree regularly through rituals, such as enjoying an ice cream cone in her honor on her birthday, or by planting trees in his honor. Reading and reviewing your diary will be a great way to remember. Of course, your best memorial to your caree’s memory is a life you build for yourself filled with healthy relationships, productive careers and joy and laughter.

4. An apple a day… Your apples kept you going. Now, consider how you’ll use them to create your future. How did your apples change? How did you change? What would you like to try next? Go for it. The world is your apple.

5. After Giving. Connect with other former family carers adjusting to a life after caregiving.

Last Updated on September 9, 2022