Tag: #alzheimers

Are there any positive benefits to being a family helper or care giver?

Sandwich generation

February 2, 2022

So often we talk about the stressors and negative consequences of helping a loved one. But, what about the positive things that can happen? There actually are some benefits.

Care giving is full of ups and downs. Every day may be different. Different is not always a bad thing. You may even have more pleasant days than bad days. I know, some of you are thinking that pleasant days are not what you experience. I get it, not everything is going to be pleasant.

Think back to a rough day. One where it took you three hours to get them dressed and fed. Maybe, it was a day that they did not recognize you and they balked at every turn. It gets emotionally draining. We tend to remember all the problems and struggles that we deal with. Why? I am sure our amygdala has something to do with it. LOL. Look, we remember it because it messed with our plans. We hit a resistance or barrier of some kind. Did we shift our focus or try another way or even try again later? Nope. We pushed through and made it happen. What was left in our wake? Wasted time. Hurt feelings. Frustration. We just reinforced all of the negative feelings. We forgot to focus on the small victories. They can still get dressed and they can still eat. They can still get out. Your unmet expectations are what really caused the “problems.”

While we are focusing on a dementia or Alzheimer’s related issue today, it could be any chronic health condition that causes a decline in our loved one. A physical decline and/or a mental decline happens in a lot of other diagnoses.

I wish that I could tell you there are predictable patterns. It all depends on what area(s) of the brain are affected. Their brain is failing. You may experience a problem with the bathing issues and someone else may be dealing with the 500 questions a day issue (the same 500 questions). Maybe, they are still quite mobile and wander off, repeatedly. You must realize that all of these behaviors are UNCONTROLLABLE for folks with dementia. Alzheimer’s is the most common dementia. Analyze your own response to the frustration. See what you can modify or change to make the process go more smoothly. If you find yourself getting more and more frustrated, it is past time for you to take a break.

Next time, focus on what they can do. See what they can do for themselves, even if it takes longer. What would you consider a success, taking their limitations or bad days in to account? Go in with a smile and a warm fuzzy feeling in your attitude. They will pick up on that. Spend a few minutes talking with them. Touching them gently on the arm or shoulder. Use the phrase, “we are going to _____________ now.” One thing at a time. One arm at a time. Speak to them and tell them what “we” are doing in a calm, loving voice. Take a break, if they need to. You will still complete the tasks much easier and faster if they are helping and not fighting you. How ever long you think it should take … multiply that by 4. That is your timetable.

It will be in the small things that you will see what you have accomplished. Their calmness and trust will be so amazing. Even if they are no longer verbal, they sense emotions and do it quite well. They may look at you and not know your name or maybe not even who you are. But, they know that you are someone that cares about them, that loves them because they sense it.

You have a purpose. To help someone that you love have the best quality of life possible for them.  It feels good to have a purpose. It feels good to help someone that you love. They have helped you and now you get to help them.

You being there is important. None of us want to be alone. Your time, effort and attention provides comfort to them. I hope that brings you comfort and joy.

You find yourself talking with them. For the first time, in a long time, you are having a real conversation. Telling and listening to stories.

You will be changed by this experience. Maybe you figure out what you want and what you do not want when you reach their age. Maybe you see the things that you need to take care of now, so your kids won’t have to struggle to find the information needed.

You probably will never receive an award for being a helper or care giver to your loved one. You may never even be appreciated. You may never be acknowledged for what you do or what you have sacrificed.  Did you really do it for the accolades? Probably not, but some people do.

What if you haven’t been close and they need you now? Could this be a time of mending fences? Could this be a time of moving forward? What about resolving old hurts or negative feelings?

Care giving can teach you a big lesson about control. As in, you are not in control and you cannot control the outcomes. That, sucks! It is a lesson that we all need to learn. We can do our best. We can make plans. We can implement the plans. But, we have no control over the outcome.

Your own kids are watching you. They are watching how you act towards your mom, dad, spouse or partner. They are listening to what you say. They are observing what you do and how you handle problems or stressful situations. You are modeling for them what to do and how to act. Your attitude towards your loved one may very well become their attitude towards you when you need their help.

Even with all of the positives of helping a loved one … we all need to take breaks to rest and recharge.

Pat

p.s. Share this blog with your friends.

Wednesday Wonderings… What are the feelings you are dealing with as an adult child helping a loved one?

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.

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 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 –

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?

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.

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.

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, 

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 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.

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 felling 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.

There are physiological changes that happen when we are under stress. It affects your body in such a way that you cannot make good decisions. The following was stolen, I mean borrowed from Harvard Health. https://www.health.harvard.edu/staying-healthy/understanding-the-stress-response

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?

Let’s have a chat.

Pat

pat@EmpoweringHealthOptions.com

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

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.