When to deal with it. When to ignore it. When to fight about it. When to take a break.
You have seen the t-shirts or maybe you have even said something like this …
It’s all fun and games until…Someone loses a weiner. (Feel free to add your own line.)
Someone calls HR.
Someone loses a nut.
Being with and dealing with someone who has a chronic illness such as depression, multiple sclerosis, Parkinson’s, Alzheimer’s, or migraines is all fun and games…at first. At first it is easy to do your work job, your house stuff, your play time, school stuff, church stuff, and all kinds of other “stuff.”
Eventually, more is needed of you. Your time, your efforts, your energy. Suck-it-up-buttercup works for a while. Then the demands on your time become draining. Do you take a time out and rest? Do you take a couple of days to recharge? No. You keep doing what you need to do. What you have to do. I get it. You want to be there for them and help them. You do love them and want the best for them. But…
Eventually, there is always a “But…”
Find where you are in the caregiving situation
Take three minutes and assess where you are in the care giving cycle, what is going on with your work, your family, your responsibilities, your care receiver, your physical needs, your mental needs, your emotional needs?
If you haven’t found your “but,” then either you are new to this or you won’t let yourself think about it. You can compartmentalize and stuff things down, for a while too. You put your job in one box. You put your personal stuff in another box. Another box has your care giver duties in it. Everything has their own nice little box and never are the boxes to leak or burst open and mix with the other boxes. Sure, you have everything under control, until you don’t Shit happens and at the most inopportune time. No matter how secure your box is, there will come a time when you will have to deal with all of it. How do I know? I have done it myself. I pushed things down. Ignored things and people. Yelled at work. Ranted and reaved at home. For minor things. Silly, little things. I didn’t know, at the time, that my boxes were leaking. I didn’t realize that I was very short tempered. I didn’t realize the damage I was doing to my techs who worked with me. I didn’t realize that my boys were becoming scared of me. Imagine how it feels when you do realize all of those things and more. The apologies you have to make. The rebuilding of trust and security for the boys. The knowledge that nothing will ever be the same. Even with forgiveness, no one forgets. I did do better, when I knew better. I wasn’t taking care of my needs. I had to put myself in the mix to rest and recharge to be able to help my dad who was the primary caregiver to my mom.
Some people need time to think before they respond
Should you always deal with a situation when it arises? My personal preference is, yes, deal with it now. If it were only that simple. If it only involved me, it would be simple. It does not just involve me. It involves three other people. Dammit. Now we have to discuss it, think about it, discuss it some more and then there is always someone with an objection. How about if we, identify the situation as best we can from our own points of view and agree to discuss it at an agreed upon date and time. Did you know that everyone has their own unique point of view? Did you know that a care receiver and a care giver have totally different views at times? Most folks have no idea what the care receiver wants or needs, they just assume according to their own wants and needs. If you are going to help someone else it is probably a good idea to talk with them to find out the who, what, where, when and why’s of things.
What if we could get away from right or wrong? What if we could be open to the possibility of many different ideas, ways or opportunities? If I can realize that it is not always my way or the highway, then you can too. Give each other the time and good information when there is a major decision to be made.
Yes, some things can be ignored, at least for awhile
Some things you do need to ignore. Some things do not need to be handled right now. The things that will not matter in a month, you ignore. The things that will not matter in a year or two, you ignore. The minor household chores that can be delayed, ignore them until another time when you are better equipped to make a decision. Decision fatigue is a real thing. It takes a lot of energy to think and make decisions that are new to you. I know this sounds like management by crises, but it isn’t. You get to choose. Make the best choice possible with the information that you have, right now. It is a gift to be able to make a decision before a crisis hits. A plan of action to implement, when needed, is a lifeline. Usually, the things to ignore are behavior issues. You may be dealing with an angry aging parent. They may have outbursts. Abusive behavior you cannot ignore. You must take care of yourself. They may refuse to bathe or change their clothes. Ok, so ignore it for a day or two. If they are not in harms way, sometimes you have to let them be. Your family knows your buttons and they know how to push them and they will push them. Can you ignore the button pushing? Can you, let it go? If you can, you will be much happier and much more in control. If you can’t ignore your buttons being pushed, you will get stuck, become even more frustrated and stressed out.
What about fighting? I am not talking about physical fighting, I am talking about arguing, which is fighting in my world. This one can be tricky. Some families cannot handle fighting in any way, shape or form. They would sooner give up everything than to fight. Other families can have a frank discussion with fighting, work it out and move on with no hard feelings. Others can fuss and fight and have hard feelings for many months, even forever at times.
Practice Active Listening
I wonder what is causing the fighting? Feeling unheard or ignored is a big trigger. Listen to each other first. Use a talking stick. You know, the one holding the stick gets to talk and then when they are finished, they pass it on to another person. STOP figuring out how you will respond. If you are figuring out how to respond, you are not listening. Listen for understanding. Sometimes people may say the wrong words, listen for the understanding and feelings behind the words. You do not have to agree but you do have to agree to disagree. Are you open to the possibility that the choices you must make are for right now? That in a week or two you may make different choices. Sometimes there are no good choices. There are only the choices that you will regret the least making. I wish that I could tell you that all your choices will be logical, but that is not realistic. Are we fighting because we are afraid of making a mistake or a bad choice? Guess what? You will make mistakes. You will make a bad choice. They can be rectified, almost all of the time. When you make a bad choice, do what athletes do, pat your chest twice with your hand and say “my bad.” Then move forward. Stop beating yourself up. Did you do the best that you could with the information you had at the time? If yes, move on.
One thing at a time
Instead of fighting what if we worked on one issue at a time and not the lifetime of issues? I understand that some folks cannot find common ground. In that case, place the needs of the care receiver and the hands-on caregiver at the top of the list. You may find that a dictatorship is the best way to proceed.
I am amazed at the folks that do not talk to a relative because of an issue with hurt feelings. I have seen it in my extended family but not my core family. We could always express our opinion, discuss, fuss, fight or whatever we needed to do without fear of being cut out of each other’s lives. You do have to work within the parameters of your family dynamics. We could chase many rabbits on this topic.
When to take a break? Before you are drained would be ideal. You will need physical breaks and mental breaks. There will be times that you are too overwhelmed to make a decision. Too tired or you do not have enough good information to make a decision yet. Take that time out. Agree to take a break if a discussion becomes too intense. Come back in a couple of days or another week. Maybe you are at an impasse. Who will be the ultimate decider?
Chronic stress can kill you. Take a break to rest and recharge.
Key signs you need a break include:
Changes in eating habits
Cynicism about work
Difficulty concentrating
Getting sick more frequently
Lack of energy
Lack of motivation
Low mood
Frustration
Feeling unfocused or fuzzy-headed
Physical symptoms such as headaches or stomachaches
Poor performance at work
Sleep disturbances
Using drugs or alcohol to cope with stress
Withdrawing from friends, family, or co-workers
What days or times will you be taking time off? Write it down on the calendar. Yes, write it down. What gets written down, gets done. Realize that you will feel uncomfortable doing this. It is okay to feel some discomfort. Do not let that discomfort derail you from much needed time off or time away. You will come back stronger and more able to deal with any issue that may arise. Even an elite athlete needs days off.
Emotions, Feelings and other things that mess us up!
September 1, 2021
Do you love someone that has a chronic disease such as Alzheimer’s disease, Parkinson’s disease, Multiple Sclerosis, Migraine, Depression, Arthritis, Cancer, Asthma, COPD, ALS, and more? Are you one of the ones or maybe the only one that takes care of them or you see to the daily care of them by someone else? Congratulations! You are a caregiver. Yes, even if you do not provide the hands-on care day to day. The aging parent for me was my mom.
Last week I told the story of why I do what I do. I gave you the nuts and bolts of what happened. This week it is about the feelings and emotions that I experienced. When I let myself deal with them? This is the story that I did not and do not want to write. It is hard. It is messy. It makes me feel weak. I did not see myself as a caregiver because I wasn’t doing the hands-on or primary care, but I was seeing to other caregiving responsibilities. I was an adult child caring for an aging parent.
I wanted to start out by showing the Robert Plutchik wheel of emotions and do some explaining. Why? Because it would have been an easier way to describe and show emotions, feelings and how every thing connects. It is a good graphic. You see, it is much easier for me to teach you something. It is much easier to show you something and how things are intertwined.
Emotions get messy. Feelings are all over the place. They sometimes do not make sense and they rise up at the most inopportune times. They do not follow a straight line nor are they in order. There will be some cussing in this article. I can only promise to do my best in telling you what I have experienced, dealt with and other crap. It may be disjointed and out of order with regards to the timeline of my mother’s MS diagnosis, the things I dealt with through the years, and my mama’s death and the years that followed.
Some of the feelings caregivers feel
Anger – Things are messing up my plans and I don’t like it! Always remember it is really not the person causing the anger, it is the situation.
Rage – Too much crap coming at me all at one time and I will be taking it out on those I love and are close to me. The ranting and raving will cause very unkind words, the throwing of objects, or even complete shutdown so as to not let things fly.
Disappointment – In yourself, your abilities to take care of things. You know, failure. The one thing that you cannot abide. You must not fail, you cannot fail, this is too important.
Ostrich time – When you stick your head in the sand and think, “If I don’t see it, then I don’t have to deal with it.”
Do it all – Are you being a martyr? You know perfectly well that others can and will help, if you would only let them. Have things for them to do and help you with. I have met some people that want the accolades and “oh, you poor dear.” They want the attention from others. It happens more than you know.
Frustration – This is a biggie. You feel like you cannot fulfill needs. Too much uncertainty and insecurity. You feel out of control and you hate that feeling most of all.
Irritated – minor things start building up and when you don’t accept things as they are…you start moving into the Anger and Rage.
Anxiety – Things are out of control and you don’t know how to bring them back under control. This is actually your early warning sign that something is not right. You may be feeling the urge to run away or cry.
Boredom – You don’t get to do anything that brings you joy or happiness. You are existing. This is the time when you realize that you need some “me time” or respite care.
Depression/Sadness – These two are together because prolonged sadness can lead to depression. You are under tremendous stress and that pumps cortisol and other hormones throughout your body. Brain chemistry can and does change over time. Maybe, it is time for you to see your doctor.
Disgust – Having to help someone toilet or bathe may be too intimate for you to handle. It can be very uncomfortable or unnerving to help with these types of private issues. Think about changing a baby’s dirty diaper. Now, think about changing an adult’s dirty diaper.
Embarrassment – Yes, even embarrassment. Some folks will not bathe. They will not change their clothes. They just stink. I am grateful that we did not have to deal with a bathing or changing clothes issue. Occasionally, it may be a feeding issue and food or drink goes everywhere. Here you are out in public and a big mess happens.
Impatience – You have all of these things that you want to accomplish today and your care receiver can’t even get up and get dressed much less eat breakfast before that 10:00 appt. Notice what is happening here – it is about you and what YOU want to accomplish. It is no longer about you. It is about them. It will take three times a long as you have planned to do anything. Take a break or a time out. When you begin to force them, you are beginning to abuse them.
Loneliness – You are isolated and you don’t have your support network to be with or sometimes even to talk to.
Crankiness – Because you are so tired. Your sleep is disturbed. You can’t fall asleep, you can’t stay asleep, your care receiver gets up at all hours of the night, etc.
Resentment – You did not choose this. Maybe you have brothers and sisters that are not helping out, or maybe you are an only child. Every family puts the “fun” in dysfunctional. It is the situation.
Feeling unappreciated – Learning to accept help is very hard. None of us wants to be dependent on anyone else. We may even push those trying to help away. I wish I had a fix for this, but there isn’t one. You will have to pat yourself on the back. The care receiver will not see or acknowledge what you are giving up to help them nor will they thank you. So, you can accept this for what it is or you can keep getting your feelings hurt.
Guilt – the feeling that we have when we have done something wrong. The guilt will come in many forms. Over not having done enough to have prevented “X, Y or Z.” Guilt over your impatience or how you have treated them sometimes. You feel guilty for thinking about your own well-being. Any number of things may cause you to feel guilty. Will you giver yourself permission to forgive yourself for not being perfect? Will you forgive yourself for the “shoulda, woulda’s, could a’s?” Will you accept that you are doing the best that you can and that is good enough?
Fear of failure – This is the one that smacks me right in the face. I cannot fail. I must not fail. I will not fail. I can only do my best. What if something happens? How will I cope? Will I feel guilty? All of these scenario’s race through your mind. The “might happen”, the “what ifs.” All those do is to keep us stuck from dealing with what is happening, right now. This is where having a contingency plan in place is very helpful. I like contingency plans. While it may not cover everything, it will cover most things. Ahh, some sense of control. Now we can rest and recharge.
Grief – Watching them decline hurts. Sometimes it huts too much to deal with at the time or if you are like me, you don’t even know it is happening. You just stuff shit and soldier on.
Who are you? What is your natural tendency during regular times? What are your tendencies during stressful situations?
My personal example of caregiving for my mom
What is Pat Collins’ basic temperament and usual state of being? I am content. I am usually positive and hopeful, even when things do not go as planned. I do like things to go my way. I am a bit of an ass. If I think something is right, I will choose that. I am open to others’ ideas and opinions, usually. I will do what I think is best for my family and not just me. I deal with whatever situation is happening at the time. If I make a mistake or what I tried did not work, then I figure out something else to try. I am open to trying things that are science based, but no “woo-woo” stuff. I am confident in what I know and others see this as cocky sometimes. I am caring and want the best for folks. I hate people that mistreat or hurt others, especially those that cannot care for themselves. I have faith in God. I am a part of the sandwich generation.
My mom was diagnosed with MS in about 1990. I did what research that I could at the medical library. Remember, this was pre personal computer days. Not much was written about it. I prayed to God, “just don’t let my mama die.” That was the first emotion. Fear of my mama dying. Only think and feel this at night while alone.
Get on with everyday life. No personal emotions allowed during work. Learn to compartmentalize. Apparently, I did learn that and learn it well. As the weeks passed, I became more relaxed about my mom’s condition. I had done my research. I had talked with her neurologist, and we were good with the treatment plan. I knew that my mama’s life would probably not be shortened by MS. We would have to make adjustments, but we could handle that.
None of us talked about the eventuality of her becoming disabled and needing 24/7 care. We always thought that time was way on out, if it happened at all. Mama was the one that brought up going to a nursing home. She was the practical one. Daddy would not hear of that; he was determined to keep her at home. You would think that me, my brother and my dad would talk about the future needs. I am a pharmacist; my brother is a physician and my dad was still working full time and so was my mom. But, no we did not. There was no need, right now.
Life was pretty normal for five years or so. My brother and I had careers, families and our own things to do. You know, the everyday things that you deal with. Work could be stressful with some patients/customers. Work could also be stressful with budgets, hiring, training, ordering, inventory control and filling prescriptions I would be aggravated, angry and just plain tired some days. Oh yeah, throw in the sports practices, games and homework along with eating dinner, bath time and bedtime. All of these “mini-crises” can take a toll too. You don’t realize that though. It is just a day in the life. Everyone has them and you handle it and move forward. My decompress time was reading the newspaper in the evenings after I got home and checked on everybody. I worked 9 am – 9 pm shifts, every other day and every other weekend, unless I filled in at another pharmacy. That extra was more often than not. I was always hyped up from the day of work and it would take until midnight or 1 a.m. for my thoughts and brain to settle down. They weren’t bad thoughts, just thoughts of the day (the replay), situations or whatever had happened. The thinking about what was coming up, etc. Just stuff. I would lift weights and walk regularly. See, I did have an outlet for stress. I never liked the taste of alcohol and so when I was drinking in high school or college, it was to get drunk. I have tried different drinks after pharmacy school, but I did not like any of them. I am not a fun drunk anyway; I just want to go to sleep. I would rather have an iced tea, water, or a soft drink in a social setting. Too many people fall into the negative ways of dealing with stress and excessive drinking is one of them.
Moving on to the late 1990s to early 2000s. Things are beginning to get more time consuming on the mama front. The boys are getting older and into more specific sports which require more practice and more practice days every week. Oh, and now they are beginning to have social lives with parties, sleepovers and playdates. Their lives are way more active and social than mine. Hmm,
The strain of caring for an elderly parent is weighing on me
I am getting tired and pissed at being summoned down to the house to deal with mama and daddy because it seems as though they are acting like children. What was really going on? Nothing, if you ask them. Just the same old same old. Bullshit! I have mama upset and wanting to divorce daddy and I have daddy telling me he doesn’t know how much more he can take. Yep, everything is good, until it isn’t. Mama had begun having mini-strokes by now and they were affecting her behavior and so was the MS. I was mad at her for smoking, in the bathroom all these years. She never did smoke in front of us. I tried to get her to quit, but it never happened until she was diagnosed with beginning emphysema. We get to deal with the aftermath of her poor choices is what I was thinking. How can I love my mama so much and be so mad at her? The opposite of love is not hate, it is apathy, you just do not care anymore. I don’t have the luxury of being mad right now, I have to fix shit. That is what I do, fix shit. I am observing and talking with both of them, separately of course. Listening for clues as to what is really going on. I love my daddy, but he can piss me off in a New York minute. If daddy, has it in his mind that something is or is not “right in his way of thinking” then he will not listen to reason or change his mind. Mama has declined and it is not the normal MS decline issues, other things are impacting her. I suspect depression and probably more mini-strokes. She needs to see a psychiatrist. I make that suggestion, and daddy is not having any of it, because he does not “believe in that.” He told me that I could make the appointment and take her, but he was not going to do it. Let’s recap, I have mama and daddy in a pissing match, I am working full time and helping with the boys. My partner is having severe migraines and is out of commission for most of the time. Now, it is all on me to handle. I handle it. I handle it all. I handle everything but my own needs. My wants and needs are pushed to the back of the line. I do not yet realize that as I am in “fix it or handle it” mode. I don’t yet realize that I am a bear to work with at work. I am short and curt in my speaking. I have no tolerance for any little mistake. My mind is elsewhere. I do what I have to do. I get the boys to where they all three need to be and by when they need to be there. I have to leave work, which stresses me out, for 20 minutes to take care of my partner’s needs. I get others to help me run the boys’ places, if I can. I send my tech out to take a child somewhere. I am doing management by crises and I don’t like it at all. Right now, I don’t have the luxury of being able to plan ahead. I am in the middle of it and I am just surviving. I am certainly not thriving. I am mad, angry, upset, frustrated and I keep stuffing all of those feelings down. I would not be able to express those feelings without exploding on someone. When pushed, I can and will explode. I don’t like myself when I do that. I do prefer to talk about things before they get totally out of hand. I am not known for taking a time out first and it would be better, if I did. My preference is to deal with whatever arises when it arises and then be done with it.
What happens when I stuff my feelings? Some of this, I did not know or realize until others pointed it out to me. I was mentally exhausted. You cannot unhear what you have heard even though you know it wasn’t really the person, but the disease or condition. Increased tension headaches and migraines. To the point of daily tension headaches. Stomach problems and in my case cramps and diarrhea. I would blow up at small things that never would have bothered me before. Leaving others to deal with my wrath and wondering what they had done to deserve that? They did not deserve it; I was too busy not dealing with my negative emotions that they just kept bubbling up and were always right under the surface…waiting to explode on anyone and everyone. I had a difficult time experiencing joy and happiness during this time. My neck and shoulders were permanently tight and knotted up. At one point, I thought I was having a heart attack, until I realized that I had forgotten to take my Prilosec® for the past three days.
The emotional stress of rage & anger
The rage and anger that I felt. It wasn’t at my mam or even God. It was at the MS and how our lives had changed. It was not what any of us had planned. Fear of the unknown. Not being able to plan things. I am a planner by nature and when I have to go with the flow…that is hell to me. I was mad. I loved my mama; how could I be this mad? Because, my life was impacted. My days off were being taken over. I missed my partner, my boys, and my time. I did not have a choice and that made me even madder. Daddy would not do what I asked of him and that pissed me off too. Yes, I felt like giving up and throwing in the towel. Saying, fuck this shit, I’m out. The hurt that my heart felt when I would hear my mama say some things that were not like her. I know it wasn’t her, but damn, it hurt and I can’t unhear what she said. This is where you have to know what you know. You have to know who your mama is and who she is not. The mama I had grown up with was no longer here. The funny, loving, smart woman was no longer here. She had changed or rather her mini-strokes, depression and MS had changed her. Not all of her, but quite a lot of her personality. I can’t explain it, it is something that you feel, you know and you understand.
Stuffing emotions and feelings. I was very good at it. I was not good at dealing with the slip-ups or the aftermath. I had to go back a few years after my mom’s death to see what had happened and how I coped. I did not realize that I was grieving my mom’s death way before she died. What had I done to my partner? What had I done to my boys? Work? What had I done to myself? Buckle up, it ain’t going to be pretty.
I felt lonely. I felt isolated. I felt like I was the only one trying to take care of shit. I felt anxious and on alert all of the time. I could not relax. I did not work out or walk and that made me feel worse. I thought I did not have the time nor the energy to work out regularly, I had too much going on. Too much that needed my attention. I was so wrong. I would have been much better off emotionally and physically if I had kept up working out and walking. It is probably a good idea that I do not like the taste of alcohol. A lot of folks do use alcohol to cope.
What I didn’t know how to do
I didn’t know that I could feel the emotions or feelings and just let them go without putting an attachment to them. Those thoughts and feelings go through our minds all of the time and really all we have to do is acknowledge them and wonder why this is showing up? I did not know that I could be curious about a feeling or emotion and why it may have gotten triggered. Yes, we all have buttons that can be pushed. Our family knows all of our buttons and they push them so well. We have to relearn how to engage or NOT to engage. It can be done and you will not longer be triggered. Guess what? That trigger has no power over your anymore. That is beyond the scope of this article.
Every failing has a message. It is trying to tell you something. It is best to deal with them as they arise and not let them build up pressure to an explosion. If you are an empathetic person some of the feelings or emotions you may be carrying around are not yours. You may be picking up on others feelings and emotions. I know that it sounds weird, but energy is energy.
I wasn’t available to attend to my partner’s or my kids’ emotional needs. I was in survival mode. I was not the hands-on caregiver to my mother. My daddy was. I was doing my best to get her to the doctor that she needed to see and the medications that she needed. I cannot imagine the stress that the hands-on caregivers are under if they have their own career, spouse, kids and home to take care of too. I know the stress that I was under. I know the hurt feelings that I caused my partner, my kids, my technicians and my patients. You can never apologize enough. You can never make up for it. All you can do is do better and be better from now on. I hated the distance that was between me, my partner and my boys. My oldest was still in high school when my mom died. They are all grown now and doing well. My partner and I are no longer together.
The stress response begins in the brain (see illustration). When someone confronts an oncoming car or other danger, the eyes or ears (or both) send the information to the amygdala, an area of the brain that contributes to emotional processing. The amygdala interprets the images and sounds. When it perceives danger, it instantly sends a distress signal to the hypothalamus.
Command center
When someone experiences a stressful event, the amygdala, an area of the brain that contributes to emotional processing, sends a distress signal to the hypothalamus. This area of the brain functions like a command center, communicating with the rest of the body through the nervous system so that the person has the energy to fight or flee.
Happening in the brain
The hypothalamus is a bit like a command center. This area of the brain communicates with the rest of the body through the autonomic nervous system, which controls such involuntary body functions as breathing, blood pressure, heartbeat, and the dilation or constriction of key blood vessels and small airways in the lungs called bronchioles. The autonomic nervous system has two components, the sympathetic nervous system and the parasympathetic nervous system. The sympathetic nervous system functions like a gas pedal in a car. It triggers the fight-or-flight response, providing the body with a burst of energy so that it can respond to perceived dangers. The parasympathetic nervous system acts like a brake. It promotes the “rest and digest” response that calms the body down after the danger has passed.
After the amygdala sends a distress signal, the hypothalamus activates the sympathetic nervous system by sending signals through the autonomic nerves to the adrenal glands. These glands respond by pumping the hormone epinephrine (also known as adrenaline) into the bloodstream. As epinephrine circulates through the body, it brings on a number of physiological changes. The heart beats faster than normal, pushing blood to the muscles, heart, and other vital organs. Pulse rate and blood pressure go up. The person undergoing these changes also starts to breathe more rapidly. Small airways in the lungs open wide. This way, the lungs can take in as much oxygen as possible with each breath. Extra oxygen is sent to the brain, increasing alertness. Sight, hearing, and other senses become sharper. Meanwhile, epinephrine triggers the release of blood sugar (glucose) and fats from temporary storage sites in the body. These nutrients flood into the bloodstream, supplying energy to all parts of the body.
All of these changes happen so quickly that people aren’t aware of them. In fact, the wiring is so efficient that the amygdala and hypothalamus start this cascade even before the brain’s visual centers have had a chance to fully process what is happening. That’s why people are able to jump out of the path of an oncoming car even before they think about what they are doing.
As the initial surge of epinephrine subsides, the hypothalamus activates the second component of the stress response system — known as the HPA axis. This network consists of the hypothalamus, the pituitary gland, and the adrenal glands.
The HPA axis relies on a series of hormonal signals to keep the sympathetic nervous system — the “gas pedal” — pressed down. If the brain continues to perceive something as dangerous, the hypothalamus releases corticotropin-releasing hormone (CRH), which travels to the pituitary gland, triggering the release of adrenocorticotropic hormone (ACTH). This hormone travels to the adrenal glands, prompting them to release cortisol. The body thus stays revved up and on high alert. When the threat passes, cortisol levels fall. The parasympathetic nervous system — the “brake” — then dampens the stress response.
It is not just emotional. Stress impacts your brain and your body. I am not one to talk about my feelings or emotions. I do know that I have them and I do feel them. I am a work in progress. I get better every day. I don’t want others to have to deal with all these negative emotions and feelings that will hurt them and their loved ones. I may not talk about it a lot, but it is my primary purpose in starting my business. Every relationship is different. Everyone has different feelings and emotions that are triggered. I can relate to what you are going through because I have been through it. No one will ever know exactly how you feel. We are all unique. We have different relationships with our loved ones. I know how to lessen the stress, anxiety and burden that you feel when you have to handle a loved one’s health care needs. Imagine how you would feel if you were a better manager for your loved one. Imagine how you would feel if you had a plan to access when you needed. Things will happen. We don’t know when. Are you prepared? Do you want to be prepared?
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We will discuss more about Robert Plutchik’s Wheel of Emotions.
Primary: The primary level circle indicates the basic type of emotions: trust, surprise, joy, sadness, anticipation, disgust, surprise and anger.
Opposites: Now understand, every primary emotion has a reverse emotion. Such as fear is reverse to anger, ecstasy is the opposite of grief, anticipation to surprise and so on.
Combinations: As you can see the faded petals [no color] it represents combinations of two primary emotions. For example, disgust and remorse gives remorse, similarly joy and anticipation offers optimism.
You are going right along and everything is going okay. Then, all of a sudden…Bam! Something happens. The something may be a decline in health, it may be an increased need of your time when you don’t have the time to give, the something may even be that your job is now requiring more of your time and energy.
You may be the “hands-on” caregiver. You may be the one that is making sure your loved one has a caregiver. You may be the one scheduling all of the appointments, taking care of the house and other chores along with your own stuff.
Are you a caregiver?
Are you a caregiver? Sometimes people do not view themselves as a caregiver if they are not providing the “hands-on” care. If you are seeing to the care of your loved one in any way, you are a caregiver. Being a caregiver will take a toll on you, your health and your relationships. Does that mean that you don’t do it? Of course not. It means that you need to be aware of the common stressors and strains that you will experience.
Being a caregiver is not easy. Being a caregiver can be rewarding. Being a caregiver can provide special and cherished times with your loved one. Being a caregiver can be maddening and fill you with anger, rage, resentment, guilt, and numbness. Being a caregiver can put you on autopilot. Being a caregiver can make you ignore your own health and needs.
I will share my experience with family caregiving for my mom
My mama was a smart, funny and encouraging person. She was a schoolteacher. She was independent. She loved God and her family. She was also stubborn and never complained. Her name was Alice and if she was the one that caught you doing something you were not supposed to be doing, she was the one that busted your butt. Growing up with her was fun and secure. My brother and I were taught how to think for ourselves, make decisions and accept the consequences from both our parents. I enjoyed talking with her on a new level as I grew up, graduated college and started my career as a pharmacist.
It was about 1988 or 1989 when I received a knock at my door one early morning. I had no idea who would be knocking at my door before 7:00 a.m. It was my mom, who lived an hour away from me. She was stopping by to tell me she was on her way to U.T. hospital for an MRI, that she may have had a stroke. My mind begins racing and I know I have to be at the pharmacy at 9:00. I took a quick shower and followed her to U.T. She was just matter of fact about the whole thing and I wanted answers. This is my mama! Of course, I knew we would not have the answers that day. She seemed fine and so I went on to work.
Two weeks later I go with her and daddy to the neurologist. When she came out, she handed me a pamphlet that stated Multiple Sclerosis. We had done a few neurological cases in pharmacy school, but MS was not one of them. Remember, this was pre-computer days. I did not know enough about MS but I would find out. I got permission to use the Medical Library at the hospital and did my research. Apparently, not a lot was known back then as all I could find about MS was one paragraph that basically stated “we don’t know and life expectancy was not thought to be affected.” That did not sit well with me and so I began to try and find out more information and mama let me go with her to her neurologists’ appointments. The neurologist was very good and helped me understand more and more. We would discuss treatment options and things to try.
Mama did well and kept on teaching. I met an amazing partner with 3 boys and we became a family. Life was good. In the early 1990’s mama began to have some concerning issues with numbness and weakness with her legs. She was more tired. By this time a new drug had been released and she began taking injections of Betaseron®. That helped for awhile and we all go back to our daily lives. The boys are in school and in sports. I am working 12 hour shifts and every other weekend.
Research before computers
The pharmacy became computerized in the early 1990’s and I could do some more research. Nothing like it is today, but I could access some papers form medical researchers. Inflammation and heat seemed to be the culprits demyelinating nerves of the brain and spinal column. I had a probable cause and now I am on to finding the ways to decrease inflammation in the body. We new about free radicals and inflammation damage when I was in pharmacy school, we just did not have medications to decrease them. Later, we learned that anti-oxidants would bind up the free radicals. But, the damn inflammation. It is very difficult for medications to cross the blood brain barrier (BBB). Yes, we could treat arthritis inflammation with non-steroidal anti-inflammatories (NSAIDs), but those medications did not seem to help the type of inflammation that MS patients experience. We continue with vitamins (for free radicals) and NSAIDs for her arthritis.
Early 2000s mama retired early and daddy kept working. She was using a cane and walker and soon she got a motorized scooter. Daddy had the house modified for a roll-in shower and he was determined to keep her at home. We all were, if possible. Mama began falling and it became evident that she would need someone at home with her. Daddy retired early. My brother and I were working and raising families. He was two hours away and I was an hour away. My parents were on a trip to see my brother and she had some kind of episode and was out of it, My brother is a physician and he took them to the hospital for tests. It appears she has had a ministroke. Mama has been a closet or rather bathroom smoker forever. Daddy finally quit smoking but he did the chewing tobacco and snuff for a long time before he finally quit all of it. She would not quit. I hated any and all smoking. It was very irritating to me and I would cough and cough and the smell was horrible too. Did she quit smoking? Nope. It took a little while longer and a diagnosis of beginning emphysema for that. But she did quit.
I needed caregiver support, but I didn’t know it
I am getting summoned down to the house more and seeing changes that I cannot blame only on the MS. Depression, and MS side effects here we go. The person that was my mama was no longer there. And, she would not be coming back. Mama is ready to divorce daddy and daddy doesn’t know how much more he can take. Oh hell. Now what? I suggest that daddy take her to a psychiatrist. Nope, he does not believe in that and is not going to take her. He told me that I could come and take her. I am stuck. I have to work and I have the boys and their stuff. My brother is building his solo practice and is raising his family. This shit show goes on for three months and it is getting bad. I make an appointment and somehow get daddy to take her. She is started on some anti-depressants and sleeping medication. Has she told anyone that she is not sleeping? No, of course not. When I would call, it was always “I’m fine or I am doing good,” I know that generation does not complain. I get it, I am just the kid and I am ten years old in their eyes. Never mind that I am a pharmacist. My brother experienced the same thing with them and he is a doctor. It was their business and they were fine. How do you suggest things to get them to act became the new game?
A couple of months after beginning her antidepressant medication and actually sleeping mama became more like her old self. There were things she could no longer do. Pay bills, do the taxes, do crossword puzzles (may have been due to some eyesight problems). You will find out as I did that, they are very good at covering things up and they will even help cover for each other. You may find them smiling and nodding more when they are covering up a hearing loss. They won’t like to talk on the phone or especially a cellphone (they really can’t hear very well.) The house is not as clean as it once was. The sinks or counter tops are dirty or have crumbs everywhere. They cannot see as well and they miss those things. Weird bruises? They may be off balance and bumping in to walls or things and maybe even falling.
I know, we chased a rabbit or two there. Anyway, mama needed to be in the hospital for a couple of days for an infusion of steroids. I was with her and stayed. The nurses were trying to get her to help them to move her up in the bed. I told them that she can’t she has MS and her legs don’t work. All they said was, “Oh, we don’t have her chart yet.” The hell you say, you mean you haven’t read it yet. I will be your worst nightmare at the hospital if you are not doing your job. I have a medical background and I know what should be going on and what should be happening. I know the questions to ask and I will be a pest.
I am not a honds-on family caregiver
It was during this hospital stay that I realized that I am not a “hands-on” caregiver. I love my mama more than anything and I will see to it that she has what she needs and who she needs to help her. It was eye opening to me that I could not do the “hands-on” stuff. I thought that I could do it all and help mama with whatever needed to be done. Maybe, I could do what needed to be done…if it had to be done, but it was not going to be easy for me and I was not good at it.
Seeing that what needs to be done gets done is what I am good at. Figuring out stuff is what I am good at. Figuring out who needs to do what is what I am good at. Basically, I am a great health care manager.
With that realization I try to get daddy to get some in-home care help. Nope, he is not having it. They do finally get home health a few times a week because she needed to have a catheter. She was mis-catheterized once. They placed the tubing vaginally instead of uretherally. Daddy took care of that problem and changed home health companies. Never be afraid to ask questions or demand competence.
Things are going smoothly once again. Mama and daddy are getting out and about. Coming for visits to my house and my brother’s house. It is 2005 by now and mama has been telling everyone that called that her birthday month is coming up. No, not day, her birthday month and what all she wants for presents. It was her 65th birthday July 16. We had a party for her at my house with dinner and cake. Presents too. It was a great day and she had fun.
A few weeks later, I am at work on a Sunday and I get a call from daddy. Now, mama does the calling and daddy will get on the phone to talk a little but he is not the one to make the calls. Already my hackles are up. My mind goes into emergency mode before he has said anything. He says, “Pat, mama’s kidneys have shut down and they are taking her to Parkwest hospital.” He will let me know something when he knows something. There is nothing to do so stay at work. I did stay at work knowing that we closed at six. I take off for the hospital after work and she is in the critical care unit (CCU). They will be using dialysis to take the load off of her system to see if her kidneys will start filtering again. My brother is there by the time I arrive. We get a plan to visit and all go home. Daddy comes back up on Monday and stays all day at the hospital. We get to visit 15 minutes every four hours. He won’t leave the hospital. I finally convince him to stay at my house as it is only 20 minutes away. He goes every day for the first visit and does not come home until the last visit is over. I visit on my off days and I close the pharmacy early on my work days so I can make that last visit of the night. She seems to be getting a little better and at night the staff is more lenient on letting my brother and me looking at the lab results and records.
It is in reading those records that you see what is really going on. What the reality may be unless things dramatically change for the better. It is the first time that I saw that my mama was in the late stages of MS. That she was really weak and in danger. I am in full compartmentalized health care mode. I am searching and researching for what to do. I know that a nephrologist is in charge, but I have to do something…I cannot just be still and wait. Of course, the nephrologist is doing all the right things, but still, I wonder. I find myself being the medical person, not the daughter. If I am the daughter, then I must feel all the feelings and emotions that will rise up. The thoughts of her not making it and leaving us. What would my daddy do? What would I do? Nope, not going there. Stuff it down, soldier on. Facts, figures, what to do if this does not work is where my focus is. I hate waiting! I hate not knowing! I can’t deal with the hurt, the scaredness, or helping my dad deal with losing his wife and my mom. I still have to work and be on top of my game there or someone could die. My boys still need to go to school, go to practice and games.
Mama took a turn for the worse
Here is where things get fuzzy as far as timing of things. Mama knew about what was going on in the world with Hurricane Katrina. She slept a lot and we were told that she may have to go on a ventilator so she would not have to work so hard to breathe. This was Friday night at the last visit and my dad, my brother and myself were there at that visit. We all had plans to meet there on Saturday. We get home and my dad goes to bed. About 15 minutes later, the phone rings and it is the hospital. Mama has coded. I go get daddy, call my brother and we head back to the hospital. I hit the button to CCU and enter. They try to get us to go into a room. I am not having any of that and daddy tells them he is going to stay with me. They get daddy a chair and I go to mama’s room. There is this big male nurse up on her bed just pounding on her chest with CPR. I see my mama’s face and I know that she is gone. I tell them to stop, she has had enough. They did and stated to let them get her cleaned up for us to visit with her. I go back and tell daddy. About that time my brother enters the CCU area. Our eyes lock and I shake my head no. So, we wait to see her. Daddy sits beside her and holds her hand. My brother is on the other side, standing beside the bed. I am across the room leaning on the air conditioner. I don’t know how I feel. I see her and I see daddy with her and for the first time in a long time, I can see that he truly did love her. It wasn’t just a “have to deal with this because we are married.” The things he said and the way he talked about her. Daddy was always good about jokingly pestering mama and aggravating her, but to actually speak about feelings and emotions, no way. I mean, they were still taking showers together when I was a senior in high school. He always called her Jake and she called him Heavy. If they were mad at each other, they would use Alice or Jack and do the silent treatment for a few days.
We met on Saturday or Sunday to do the obituary and set the time for the service. It was Labor Day weekend 2005. They had already pre-planned and pre-paid for their funerals. It was great. You sure do not feel like making all of those decisions. We had the receiving of friends and service on Labor Day evening and internment the next morning, I think. I get the days mixed up because she died shortly after midnight.
Here we are at the receiving of friends and quite a few people show up. We would talk about the past and the “trouble” she would cause and get in to. Reminisce and tell funny stories. Later on, when I went back to work, one of my techs who came to the funeral said, “I don’t know how to say this, but your mom’s funeral wasn’t sad.” She had never been to a funeral that wasn’t sad. No, it wasn’t a sad funeral. She was loved. She was missed and she is still missed. I have no doubt that she is in Heaven and she is fine. We are the ones that are sad and miss her.
I had begun grieving before mama died, but I didn’t know it.
I didn’t realize it at the time, but I had begun grieving the loss of my mama after her MS diagnosis and during her decline. We only had to deal with a hospital crisis for a week and I know the stress and anxiety that I dealt with regarding needing to be at the hospital, needing to be at work and needing to be at home for my family. You can do it all for a short time, but not for long. You will have to choose and that is okay. Someone or something is going to get slighted for a while. The big problems arise when the others in your life feel left out, ignored or let down. In other words, their needs are not being met and their tank is empty. Oh crap! You feel that your tank has been empty and you have nothing left to give. You can barely keep doing your job, much less what you need to do at your own home. Teamwork and sharing are a good thing. Taking time out for yourself to relax and recharge is a good thing.
I believe that what caused my mom’s death was either of two NSAID medications that were pulled from the market. Vioxx® and Bextra®. Can I prove it. No, but I do believe they hastened my mother’s death. I understand all about medications, approval and the last phase of testing is when it is released to the general public. Now we know to monitor kidney function earlier. I don’t want another family to have to go through what we went through.
My why – Why I do what I do?
I started my consulting business to help folks have options, to double check on their medications, and treatment plans. To prevent the preventable. Now we have the genetic testing to see if a medication will work for you or not. We know that the families of patients with chronic health conditions such as Alzheimer’s disease. Parkinson’s disease. MS, Migraine, Chronic pain, Fibromyalgia, Depression, and Arthritis need to be heard, understood and find things that work for them. When you are in the big middle of things, you cannot think logically you are just too stressed. Sometimes you have to make a decision based on what you would regret the least. Are you frustrated, angry and just plain mad? Maybe, I can help and there are solutions.
Imagine what your life and the life of your loved one would look like if you were a better equipped manager for your loved one’s health care needs. How much less stress you would be under. How much more energy you would have to do the things that you want to do. If you want a plan of action to improve your life and the life of your loved one let’s chat. I won’t know if I can help you unless we talk. If I am the right one for you, I will tell you and if I am not the right one for your needs, I will try to point you in the right direction.
