Month: October 2022

What Caregivers Do NOT Need to Hear from Others

You may mean well. You may even mean what you say, but you are hurting them rather than helping them. Will you be open to learning how to better support someone who is helping a loved one? It will require some effort and thinking on your part.

October 26, 2022

I meant to help

I have said some things in the wrong way. I really meant to help, to be supportive and available. What went on in my own mind, did not play out well for someone I was trying to help. I had to realize that I was looking at their situation through my own ways of caregiving and what I would have liked help with.

If you truly want to be a help to your friends or family members who are caregivers, you have to buck up and take the time to learn what they need and want help with. No, that does not mean rapid-fire questions. A lot of the time, they do not know what they need or want because they are in hell and too stressed out to think.

What do you do? How about you learn what they don’t need and don’t need to hear?

    • Judgement – Don’t second guess them or their choices. You don’t know their family dynamics and you are not in their shoes.

    • Horror stories – They don’t need or want to hear about all the messed up crap that happens in nursing homes or what happened to “so-and-so.” Just shut up, there is no good that can come from that.

    • Don’t ask what they need – Granted, this is difficult as you may want to help, but you don’t know what to do. Give them the gift of your time. You know the things that need to be done at your own home. Mowing, cleaning the house, laundry, running errands, grocery shopping, and making dinner.

    • Don’t make more work for them – Don’t just show up, don’t call and say. “the gang is coming over to visit you.” They will feel the need to clean up and get the place cleaned up.

    • Don’t ignore them – Maybe they can’t attend functions much anymore, but you can keep including them. Update them and let them know that you are thinking of them.

Now we will move on to, Things You Should Never Say

    • “If you ever need a break, call me.” – What the hell. They do need a break and they don’t have time to go take a shower, much less call you.

    • “You have to take care of yourself, too.” – Do you really think that they don’t know that? You are adding more stress and guilt, so unless you are offering to sit with their caree (care receiver) so they can take care of themselves, shut up.

    • “You look tired.” – They are tired.

    • “I don’t know how you do it.” – They have no choice.

    • “God doesn’t give you more than you can handle.” – That statement is wrong on so many levels.

    • “You will get your reward in heaven,” – You have just discouraged them more.

    • Why do you keep going to visit them, they won’t remember it anyway.” – Their loved one still deserves love and care. They may not remember your name or who you are to them, but they sense and know that you are someone who loves them and cares for them.

    • “You should put them in a home.” – You don’t get to decide what is best for them and their loved ones. Pretty much, anything that has a “should” or “would” in it … Keep it to yourself.

    • “I could never do what you do.” – You don’t know what you will or won’t do until you are in your own situation. All relationships are different. All families are different.

    • “I wish there was something I could do to help.” – Bullshit, you would do something if you wanted to. We will get into the things you can do and say next week.

    • “You should get some help.” – Do you really think that they haven’t thought of that? Maybe, they can’t due to finances. Maybe, they have hired folks that do not show up.

    • “How are you doing?” in front of the caree (care receiver) – Really? Do you want them to vent right in front of their loved one?

    • “You need to find some time to relax.” – I am sure they would love to, but when and how?

    • “Don’t feel guilty about …” – Feeling guilt is a part of caregiving.

    • “Everything happens for a reason.” – No, it doesn’t. Stuff happens and we have to deal with it.

    • “I know just how you feel.” – No you don’t. You may have had a caregiver type of experience, but it is not the exact same. Situations are not exactly the same, people are not exactly the same, and needs are not exactly the same.

    • “What doesn’t kill you, makes you stronger.” – Do you think this hardship is making them stronger? That is foolish.

    • “At least it’s not cancer.” – At least it’s not…statements cause more pain to the caregiver.

    • “Just think positive thoughts.” – Way to go, you have just increased the feelings of guilt and pressure they put on themselves.

    • “Your mom (dad) used to be a great person.” – Don’t talk about their loved one in the past tense. It is hard enough to watch a loved one decline, without being reminded of what has already been lost.

Think before you speak. Practice what you will say. Say it out loud. How does it sound? Is it uplifting or helpful? How might it be taken by someone who is stressed out and exhausted?

Practice Saying It Outloud Before You Say it to the Caregiver

If you find yourself using any of the following, don’t do it. “I think,” “You should,” “I would,” “You could,”

Shut up. I get it, I want to help and fix things too, but some things are not meant to be fixed by you. That is a hard lesson, but a helpful lesson on being fully present and letting them vent. You just sit there and be the listener.

Next week we will talk about what to say and do to help a caregiver.

Pat

Husband’s say, “It’s just something you do.”, but won’t say, “I am a Caregiver.”

Men often feel unprepared when their role in the family changes. Even if, they played a significant part in child raising (changing diapers, bathing, reading to them, holding them when they cry, etc.), they do not know how to help an adult that needs help with ADLs (activities of daily living).  It is just something that you do. You may have seen your mom or dad help their parents or each other when needed. The word “caregiver” never entered your mind. Maybe, “caregiver” is a negative word these days.

October 19, 2022

Ruck up – “man up” for a difficult situation

I like that phrase. It doesn’t matter if you are a man or a woman, the sentiment is “handle it.” You can handle it and you will need help. Everything may be okay for a year or so, but, eventually, you will need help. Learn to delegate. You will still have plenty to do.

Is there a difference between caregivers or male family caregivers?

I did not identify as a caregiver because I was not doing hands-on care. I was helping out. I was doing what needed to be done. Along with working full-time and dealing with my own home and life with kids.  I was scheduling, and I was seeing to her needs. I ran errands, took her to doctor appointments, cleaned the house, mowed the yard, and did the laundry. My dad did not identify as a caregiver because he was providing care for his spouse. I wish that we didn’t have to deal with gender roles. It keeps getting less and less, but it is still an issue., especially with personal care. 

I didn’t want to be seen as a caregiver

I did not want to be seen as a caregiver. Maybe it was because I did not want to admit to myself the reality of the situation. If I did, then it would be real. I did not want to be seen as a caregiver because it made me feel weak. I wanted to “fix it,” but I couldn’t. I didn’t want to be a caregiver because it meant I had to give up some things that I wanted to do. I didn’t want to give up my life and free time. If I admitted that I was a caregiver, I would have to make changes in my life.

I did not realize that I had choices, opportunities, and helpers willing to help. I could have boundaries and provide good care. I could take care of my own needs and my family’s needs as well as care for my mom and my dad, who was the primary caregiver.

My dad never identified as a caregiver

My dad never identified as a caregiver. This was his wife and he was going to keep her at home and do what needed to be done. He learned a lot. He learned how to cook a little, clean the house, do the laundry, pay the bills, make doctor appointments, etc.

He never talked about how he felt. It didn’t matter, he had a job to do and it was going to get done. A few years later, a few mini-strokes later, a personality change and a decline in physical health all began to take their toll. Mama was not rational and daddy did not know what to do or how to handle it. He finally told me that he did not know how much more he could take. Long story short, we got her the help she needed (when daddy stopped fighting us) and things improved immensely.

He stayed in the CCU (critical care unit) area for families from the first visit until the last visit. He got to visit 10 minutes about every 4 hours. I couldn’t get him to leave, even when I was there. He finally agreed to stay with me at my house (which was 20 minutes away versus an hour from where he lived). Mama was there for about a week. She did not make it.

He did what was necessary and he was a caregiver

He took early retirement and did what needed to be done for his family. He loved her and had responsibilities as a man and husband. My brother and I saw his example of how you take care of your family. Was he perfect? No. Is that a requirement? No. Did he love her? Yes. Did he do the best he could? Yes. Was he a good caregiver? Yes.

My brother and I saw as we were growing up that you help your family in whatever way that you can. You jump in and do what is needed. We didn’t think anything about it, we just did it. That is the way a lot of us were raised.

That is great, but nobody really talked about the stress and emotions that you deal with while helping. Times were different when I was growing up only about 50% of the females or moms worked outside of the home. It is much higher than that today. Men are more hands-on with child rearing too. Good thing, too. 45% of caregivers are now men. They need different things than women caregivers. Hell, one thing is that they need to identify as “caregivers.” Men care provide just as good of home care as women can. 

Men approach caregiving differently

Men approach caregiving responsibilities differently from the way women do. Men focus on tasks and practical things that need to be done. Not so much on the nurturing tasks such as bathing, toileting, or dressing them. They can do them, but they need some training. Men are problem solvers and they tend to hire help to do some of the responsibilities that they either cannot do or do not want to do.

How frustrated might you be if you had never changed the sheets or cooked a meal? Yes, you can learn but you can also hire that stuff out.

Who are the ones most likely to have major health issues?

The strong silent types are those that will have major health issues sooner rather than later. Sadness is a part of all caregiving. Things that are lost deserve to be grieved. You may even hear men say, “What good does talking about it do?” It keeps crap from getting bottled up and further stressing you out. I get it, being stoic is about self-preservation. You can’t deal with the sadness, anger, and anxiety so you push it all down. It will eventually all come up and out. Support groups are great for all caregivers.

You are often unprepared and usually overwhelmed when the need hits. Why is identifying as a caregiver a good thing? It opens you up to possibilities of help and care. It also helps your primary care doctor know what to look out for in your own health needs.

Caregiving is a demanding job both physically and emotionally

Can you be a man and be a caregiver too? I think you can. Some men may feel it makes them look weak. That is not true. A caregiver has to be strong both physically and mentally. It is a very hard job. Strength under control is how I look at it. You have the physical strength when you need it, but you can be kind, nurturing, and loving too. To me, that is a protector. Another good thing about men as caregivers is that they are more vocal advocates for their loved one when they are in a caregiving role. 

Guys, you may feel that you are failing if you aren’t able to “fix-it.” You are not a failure. Sometimes, things cannot be fixed. You have to be strong enough to let things “be as they are.” That sucks and it hurts. It doesn’t mean that we do not have hope or work toward goals, but we can accept things just as they are, right now. I can accept reality but I never give up.

Feelings pop up, resentments pop up

You will feel alone. You will feel resentment. You will begin the grieving process before they are gone. It is your job to take care of your own physical and emotional needs. If you don’t then you will not be an effective caregiver for very long. Then what?

Have a list ready and share the care responsibilities that you can share

Place your to-do chores list on the refrigerator and leave a place for names of who will do the chore. People usually ask what you need or what you need to be done. Of course, you can’t think of a thing when they ask…

This way they can check the list on the refrigerator and pick what they can help with. Yes, you can put a time frame or day on the chore that needs to be done. Put everything that someone else could do on your list and see what you get.

Examples

    • Dinner Monday

    • Dinner Tuesday

    • Dinner Thursday

    • Laundry Wednesday (take home and bring back)

    • Clean the bathrooms

    • Mow the yard

    • Clean the gutters

    • Change the sheets Friday

    • Vacuum, Sweep, Mop

    • Sit with her from X to Y on Friday

    • Take her to the beauty parlor on ______ at _____

Getting help is not a sign of weakness, it is a strategy for being a successful family caregiver. 

Pat

Burnout stage or Nervous breakdown stage, as a Caregiver?

Nervous breakdown. What does that really mean? It isn’t used as a medical term or a diagnosis, but we all seem to know what it means. It means a mental health crisis. It means an emotional health crisis. It is also known as a breakdown of your mental health.

It happens when you have intense physical and emotional stress, with difficulty coping and you are not able to function effectively or normally anymore. You feel like you are losing control. The stress that you are under may have you feeling anxiety, fear, worry, stuck, overwhelmed, and/or nervous.  You are at the point where you can no longer function in life. Many caregivers will experience caregiver stress and exhaustion. 

October 12, 2022

Everyone’s Caregiver Stressors are Different

Everyone is different and everyone will have different stressors and reactions to those stressors. This is way past burnout.

A few things to watch out for:

    • You call in sick for a day or two (sometimes, longer).

    • You miss appointments.

    • You avoid or back out of social engagements.

    • You have trouble with healthy eating, exercising regularly, sleep, and your personal hygiene starts slipping.

    • You withdraw from people and don’t want to leave your home.

    • You lose interest in things that used to bring you joy.

    • Panic attacks.

    • PTSD flashbacks

Things pile on

We all have our own “set point” for a breakdown. Losses are a huge part, especially if they are stacked one on top of another. For example, a death, a divorce, losing your house, a terminal illness, being a caregiver, losing your job, family turmoil, severe financial strain, a chronic medical condition (a worsening chronic medical condition), inability to relax, continued loss of sleep, work stress, school stress, lack of self-care, etc.

As you can see, a lot of things can pile on. Step away, take a timeout! Get a talk therapy appointment, ASAP. You are no longer able to get out of this situation on your own.   Breathe, just deep breathe for 5 minutes.

You will have to make adjustments and learn better-coping skills. You will have to learn to say, “No.” You will have to take care of yourself physically and mentally before you can help anyone else. Yes, you can recover, but I want you to be able to prevent burnout. 

Burnout is more common. My wish for all of us is that we take better care of ourselves BEFORE we get to this stage. The same stressors apply, they may not be as intense or as long, but they could be.

Burnout is usually defined as chronic stress related to poor life and work practices, that produce exhaustion (physically, mentally, and emotionally). You are overloaded and overwhelmed. When a person is overloaded and overwhelmed with negative emotions and feelings rear their ugly heads. We have hostility, anger, and frustrations and we don’t seem to be able to cope or handle these negative emotions.

Extreme burnout will lead to a mental health crisis.

This article from Medical News Today, explains burnout very well.

Some causes of caregiver burnout include:

    • Emotional demands: A caregiver can feel emotionally drained, especially if you are aware that the person you are taking care of will not get better despite their efforts. For example, this could happen if a person is caring for someone in palliative care.

    • Conflicting demands: These are the additional demands a person has outside of their caregiving role, such as looking after children, going to a job, and making time for their partner.

    • Ambiguous roles: Often, the role of a caregiver is all-consuming. It is easy for a person to lose sight of who they are outside of their caregiving responsibilities.

    • Workload: Some caregivers may be looking after someone with complex needs. In these instances, it is important a person seeks temporary relief and gets assistance from other carers.

    • Conflicting advice: In some cases, treatment procedures may change as research progresses. While these changes aim to give people the best care, they can cause a significant amount of disruption and stress if a caregiver has an established routine.

    • Privacy: Additional clinical support, such as nurses and other healthcare professionals, may visit a caregiver’s home throughout the week. While this can be helpful, it can also take away their privacy.

All of these factors can contribute to a caregiver feeling overwhelmed, self-critical, and drained. If they do not address these feelings, they may start experiencing serious signs of caregiver burnout. Caregiving is both emotional and physically exhausting. 

Caregiver burnout can manifest in several ways, and some people may notice they are experiencing some symptoms more strongly than others.

Symptoms of caregiver burnout include:

    • disrupted sleep

    • persistent irritability

    • altered eating patterns

    • anxiety

    • increased alcohol consumption

    • high-stress levels

    • lack of joy

    • loneliness

    • loss of hope

    • suicidal thoughts

Additionally, symptoms can indicate what stage of caregiver burnout a person is in.

The three stages of caregiver burnout are:

    1. Frustration: A person starts feeling frustrated and disappointed that the person in their care is not getting better. They cannot accept that the person’s condition will decline regardless of how well they look after them.

    1. Isolation: After a while, a person may begin to feel lonely in their caregiving role. They may also grow tired of hearing negative opinions from family members, especially if these family members do not appreciate or recognize the time and effort caring requires. At this point, the caregiver may withdraw from friends and family.

    1. Despair: Eventually, a person may feel helpless and isolated. They can find it hard to concentrate, struggle to find joy in hobbies or interests, and avoid social interactions. The level of care they provide may also begin to drop as they spend less time on their own well-being.

Read the entire article here:  https://www.medicalnewstoday.com/articles/caregiver-burnout#symptoms

Pay attention to your signs of stress and aggravation. If you need help or think that you may need some help, give me a call and let’s have a conversation. We won’t know if I can help unless we talk to see.

Pat

865-684-8771 (leave a message, if I am unable to answer)

Caregivers: How to balance expectations and reality when your care receiver won’t get better?

Sometimes, reality sucks! We cannot accept reality until we go through a process. Denial will be high and it is a coping mechanism for difficult emotions. We are not talking about avoidance, which causes a whole lot of other problems. We deny the truth so we can keep things the same. We have a fear of change and the unknown.

Facing reality means that we might have to change and make choices that we do not want to make. The uncomfortable feelings rise up within us and we become stuck. The inner conflict makes us miserable. Are you in denial about something?

October 5, 2022

Family caregiver denial

We can’t even get to balancing expectations versus reality until we deal with our denial.

Some clues that you may be in denial about something:

    • You wonder, “If only she (or he) would …?

    • You doubt or dismiss your feelings.

    • Hope things will improve when …

    • You begin to feel resentful.

    • You walk on eggshells, trying to avoid a blow-up or avoid talking about the problems.

    • You may be worried that you will develop dementia yourself.

    • You avoid talking about the issue.

    • You avoid thinking about the problem.

    • You promise to address the problem in the future.

    • You minimize or rationalize what is going on

    • You become numb to your feelings

Denial isn’t always a bad thing. It gives you time and space to gradually accept the change. You need time to process and figure out the next steps. It can become a problem when you continue the denial and your health unnecessarily suffers. You will have some anxiety. That is normal. It is not comfortable, but it is normal.

We might have to take an action that we do not want to take. Okay, on to expectations versus reality.

Caregivers have expectations

Expectations are what we think will happen. Reality is what actually happens. Our frustrations and problems arise when our expectations are not met. My perspective is not the same as your perspective. Our life experiences are not the same and we have different known and unknown biases.

What impacts our perspectives? Our energy levels and our physical strength. How attuned we are with our own bodies. Being hungry (you will not make good choices when you are hungry). Easy-to-read statements “Seem” to be truer, whether they are true or not. Feeling bad, sad or depressed makes everything seem harder. Having our family and friends (our support system) around helps make things easier.

What expectations do you have?

Common signs that you have expectations:

    • Anticipating a certain outcome.

    • Having and holding a vision in your mind of how things will play out.

    • Having a set idea of what you want or need to happen.

Idealized versions of life and what you want can set you up for disappointment. You may not even realize that you are not being realistic.

When life isn’t fair

Increasing your awareness of your expectations is one way to help. If you have a “should” in your thinking, be careful. Life is not fair. Why do you think it “should” be this way? Stop making comparisons. You are unique and your situation is unique. It is okay to feel disappointed. It is okay to feel all of your feelings. Remember, that you have control over how you act and react.

Learn to accept, “what is.”

Accepting “what is” and trying to make that better is a great goal to have. I know some of you are wondering what I mean. It is difficult to accept reality and “what is.” It takes hard work and practice to let things “Be, just as they are, right now.” It is hard for the “fix-it” types to adjust to not being able to fix it. We have to find our new role. We have to figure out how to help. We have to learn to accept the reality before we can figure out our options.

We don’t deny reality

I don’t deny the reality of what my clients are or will be going through. It will be hard and it will be exhausting. But everyone has the right to have the best quality of life possible for them. I never give up hope. Accepting what is or what will be, does not negate hope and trying. Being fully present” in “the moment is all we have. What you can see, feel touch, smell, and taste…right now.

What if we would set compassionate expectations? We are all going to get smacked down a time or two and that hurts. Something that we tried did not work out or it was a complete disaster. Well, hell! So, try something else.

We all have a mind or soul age and physical body age. My soul age is 35, but my physical body age is 60. I listen to my body and make adjustments for activity. Now, the little imp in me is still as active as ever. I play games, aggravate people, and have fun wherever I am. I have accepted the reality that I have to make adjustments sometimes. I am okay with that. That is really the key, isn’t it? Being okay with “that.”

Consider the conflicting emotions that you sometimes feel. Could that be what is really bothering you?

    • Happy & Sad

    • Scared & Excited

    • Confident & Doubtful

    • Love & Anger

    • Grief & Joy

    • Wanting time with your partner & Alone time

    • Believe in yourself & have a fear of failure

All of us have found ourselves in these types of emotions. It is like a push/pull situation. It sure can cause a lot of procrastination too. How can you make a decision when you have competing thoughts? They don’t have to cancel each other out. They can both be true and exist simultaneously. We do not have to choose we can accept both feelings. We have talked before about

Pat