Tips on how to be more helpful when assisting your loved one to bathe or shower. These are things that you need to think about when becoming a spousal caregiver. Understanding your own feelings and beliefs in this personal issue. Understanding your loved one’s feelings, wants and beliefs in this most personal area. It is difficult to ask for help with personal hygiene chores when you can no longer do your own self-care.
February 8, 2023
You two have been through a lot. You are a team, usually. You are both independent and self-sufficient. Then, things change and you are no longer self-sufficient. You have become a care recipient. You need help because of a stroke. You need help because of cancer. You need help because of Parkinson’s disease. You need help because of Alzheimer’s disease or other dementia. No matter the reason, your wife needs help with one of the most intimate parts of her life. It could be a temporary help because of surgery,
We don’t think about it much, but we each how our own ways of doing things. We have our own patterns and our own order of doing things. Most partners do not know their significant other’s daily routine. When you are the helper, you must be aware that your loved one has their own way of doing things. They have their own schedule and order in which to do things.
Learn Each Other’s Routine
Try this experiment. Each of you writes down exactly what you do from when you wake up to when you go to sleep that evening. I mean everything with the time of day noted. We won’t get into the getting dressed procedure. I know, some of you have this puzzled look on your face. We all have our preferred way of getting dressed and we have very specific ways we do things. For example, I place my left arm first, whether it is my shirt or jacket. It is automatic for me; if I even try to do it with my right arm first, I can’t do it easily AND I am out of sorts mentally.
Now, the next day write down your partner’s daily routine with times noted. Do this from what you have observed or what you assume they do. You will probably get the big things right, but probably not all of the little things.
Find a time to go over the information. Make it a date night. Talk about it and see how close you are to knowing each other’s routine. What are the similarities? What are the differences? This is a big-picture type of exercise. We all have our own routines.
When you are the helper or caregiver, it is best for the caree (your loved one) to be as comfortable and safe as possible. In order for that to happen, you need to know their routine and their times. We automatically do things in our routine and we don’t realize that others have other routines. Doing their routine becomes doubly important when your loved one has Alzheimer’s disease or another type of dementia.
Men don’t automatically know how to care for female anatomy
Guess what? Female anatomy is different from male anatomy. We don’t automatically know how to help the other person with bathing. We don’t automatically know how to wash and clean some private areas effectively. We don’t automatically know what to lotion and what to powder. Sometimes, we don’t know what we don’t know until we get in the big middle of it. That can be very stressful. Caregiving is hard and you want to provide the best personal care possible.
What follows are the supplies needed and the how-to tips to help you help your wife.
Bathroom
Grab bars installed properly and permanently. Place one above the water turn-on area, too.
Non-slip grips on bottom of tub
Portable heater to warm up the room
Shower seat or shower chair for tub
Tub rail grab bar
Hand-held shower head with 5–7-foot hose length
Remove trip hazard rugs
Shower Supplies
4 Towels
2 Washcloths
2 Hand towels
Pouf for bodywash – may have a handle
Bar soap – gentle or sensitive skin type for washing privates and underarms
Bodywash -for washing other body areas
Shampoo
Conditioner – apply on hair and immediately rinse off
Lotion
Facial moisturizer
Deodorant
Barrier cream or protectant – if needed
Powder or Talc – if needed
Gloves – nitrile seems to be the best
Pump supplies are easier to use
Cotton terry robe will help in the drying off stage, too.
Always have them sit on the toilet to pee first before getting into the tub. Warm water brings on the urge to pee and if it happens in the tub, no big deal move on.
Let the water run for 1 -2 minutes and check the temperature on the inside of your wrist before putting any water on them.
You may want to place a hand towel on the shower seat for warmth or comfort
Encourage them to wash everything that they can wash – promotes dignity and independence
Use a gait belt – get trained in how to use one first
As the helper, you need to remain calm and relaxed. It will be slower than you anticipate. If your approach is more of a loving gesture and a desire for them to feel good, it will go a lot smoother.
If you have the attitude of getting in, getting it done, and getting out…it is probably time to hire this job out.
Use the gloves – it helps to separate intimate touch from helping with a need
Use a hand towel over their lap to promote privacy and dignity while they are seated on the shower seat
Order of Washing -Be Gentle
Wash the face and neck first and dry the face
Have them place a washcloth over their eyes while you wash their hair and condition it. Ask them to tip their head back. Scalp massages feel really good.
Dry the hair with a hand towel
If they can, have them hold the shower handle
If they can wash themselves, then you soap up the washcloth or pouf
Wash their back in a circular motion all the way down to the buttocks
Wash the arms and underarms next
Wash the front torso and under the breasts – wash skin folds well, too
Rinse them off really well
Place a towel over the top half of the body and pat dry a little (helps keep them warm)
Wash the legs and have them lift up one at a time or gently lift them up. If they can stand then have them stand.
Wash the feet and in between the toes (while they are sitting)
Tell them it is time to wash private parts. Offer them the option to wash their own private parts, even if you need to help some.
Use a clean washcloth and clean the vulvar area – use a different clean area of the washcloth for each swipe
Clean from clean to dirty = front (vaginal area) to back (anal area)
Separate the labia with one hand and clean gently with a downward motion to the perineum area (area between vagina and anus)
Separate buttocks and clean from bottom to top area
Rinse very well
Talking throughout the bathing process and telling them what you are doing or will be doing next seems to help everyone calm down
Use a towel to pat dry and dry well
Areas that need extra care to be dry – vulvar area, anal area, underboob area, all skin folds and in between toes
Gently get them out of the tub. Dry them off again or place a terry cloth robe on them to help with that. They can either stand or sit on the commode (lid down and with a towel placed on the lit) while you lotion them, powder them, and put on deodorant. Dry and style the hair. ** Note, some want to dry and style their hair before applying lotion and anything else. Some brush their teeth either before getting into the shower or right after getting out and drying off. Ask what they want to do. **
Apply barrier or skin protectants to areas needed (usually incontinent folks need this)
Never lotion between toes (want to prevent fungal or other infections)
Places to put powder or talc – underboobs (skin under the breasts, and torso area where they touch), skin folds (anywhere there is skin-on-skin contact that does not get a lot of air circulation)
Do not put anything in or right around vagina (it is self-cleaning)
Help them into their clean clothes
They may need a nap after a bath, it is hard work
Getting clean makes all of us feel better. Change the sheets on the bed on a bath day. Some bathe every day and some bathe 2 or 3 times a week. That is fine. Find what works best for your loved one and you.
It is also fine if you hire a shower aide to come into your home to help with bathing your loved one. You will still have to do the daily cleansing needed which includes face, underarms, underboobs, skinfolds, feet, in between toes, vulva area and anal area. This is sometimes referred to as a sponge bath.
Products to Consider:
Soaps/Body Washes
CeraVe Body Wash for Dry Skin
Kiehl’s Grapefruit Bath & Shower Liquid Body Cleanser
Aveeno Restorative Skin Therapy Sulfate-Free Body Wash
Dial Clean + Gentle Body Wash, Aloe
Neutrogena Hydro Boost Fragrance-Free Hydrating Body Gel Cream
Too many choices, too many decisions, too much overwhelm, and decision fatigue all contribute to you feeling and being stuck. Do you feel as if you are “just surviving” every day? That stinks, doesn’t it? But, what to do and how to get started moving forward again?
November 30, 2022
Maybe, it is what to do first?
Sometimes, the issue is that we do not know what to do first. Not only that, but we stress over what is the most important thing to do first. We are afraid to be wrong and so, we do nothing. I think the acronym F.A.I.L. is appropriate here, it is your First Attempt In Learning. Yes, you are learning what works and what does not work. Failure is an event and never a person.
Afraid of making the wrong decision- pros and cons
We like certainty. We want to know that we have made the “right” decision. Our brains do not like uncertainty, it makes them work overtime to feel safe. Our brains get hijacked by our emotions and we cannot think logically. Stop overloading your brain. You do have a decision-making process, but sometimes overthinking causes you to procrastinate.
Do you feel like you have to “shop around” and keep all your options open before making a decision? Two or three would be ideal, but we have to go to 10 places and keep comparing. How many of us get too obsessed or too anxious? You know who you are and you are nodding your head in agreement. You may have many options, but are they good options for you and your loved one?
Analysis Paralysis
How much energy are these decisions taking? Is it really worth that much stress, anxiety, or energy-wasting? Have you ever thought about when this choice overload happens? It usually happens when we don’t have enough good information or knowledge in the area of need. Use your good resources. Set your limit to three of those resources. Find a knowledgeable person and have them provide you with your best two or three options for your needs. (That would be a plug for my services, in case you didn’t catch it.) I know that you are afraid of making the wrong decision. I want you to know that you can make another choice if the first one isn’t working very well. You can pivot. It really is okay.
What does feeling stuck look like?
You have been searching for something that interests you and you find it. Then you look at all the steps it takes to do it and talk yourself out of doing it.
You keep thinking about what could be better or different all the time. You may even be future-oriented. You get into the “when I get this, I will be happy” or “when this happens, I will be happy.” The problem is that you are here, right now in the present and this is where your focus for happiness would be best served.
You really want something – for yourself – a new relationship, a better job, a new house, to get in better shape, etc. – However, before you start, you lose your motivation. Maybe, you do get started and then you lose your motivation.
You have a feeling that something isn’t right in your life, even if you can’t put your finger on it.
Is it a lack of motivation?
Motivation is red hot for a while, but then it burns out and all you have are a bunch of ashes. What now? For one, the realization that motivation is never enough to achieve a goal. It takes commitment to the process. Doing it even though you don’t feel like it is another realization. Be consistent. Continue after a break.
Maybe you feel trapped as a family caregiver. You don’t mind helping, but now you feel like you never get out. It is a difficult adjustment. Be careful, resentments can build up before you know it. You feel like you are missing out. You feel trapped by doing the same tasks over and over.
Consider this, challenges are matters of perspectives and our own attitudes.
Is there some middle ground that you and your care receiver can agree to? Challenge yourself on “stinking thinking.” It could be your perspective and attitude that are the problems. Feelings change and they don’t last forever. It is best to make choices on the information that you have at the time. You will encounter a tough decision and you will feel overwhelmed. There are no perfect solutions so stop trying to find the perfect solution.
Some ideas to help you not feel trapped:
Only you can change the things in your life that you are unhappy about.
Live a healthier life by moving (walking/running) and eating better.
Be consistent, motivation alone is not enough.
Accept uncertainty. We can make good decisions, but we cannot choose the outcome.
Reconnect with your personal values.
What can you do, right now, that will be helpful?
Be the hero of your story and not the victim. Stop saying, “I don’t want …”
Stop focusing on the things that are causing you to suffer. Focus on whatever fills you up.
You may not have good options, so choose the option that you will regret the least.
See if you are in the “all or nothing” thinking. It can be a “both/and.”
Write down some “I could …” statements.
Write down three different things you are grateful for every day.
Be proactive rather than reactive. You will have more control and less stress.
Determine the number of good resources you will use. Three and no more than five. Do a pros and cons list. Throw the right choice out the window. Good enough for now, is okay.
Pat
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
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
Our bodies are made to move. When we sit for long periods our body hurts. Our joints and bones hurt. We simply do not feel good. Now, imagine that you have a disorder or chronic health condition that makes movement more difficult or you can’t remember to exercise. Your body still needs movement to relieve pain and relieve excess energy.
September 28, 2022
Move more, hurt less. Move more, rest better. Movement and exercise for the care receiver will make the care giver’s life easier.
Regular Movement and Exercise Can Decrease Agitation and Aggression
Is your loved one restless? Do they wander? Are they withdrawn? Hurting? Regular exercise and movement will help decrease these issues in people with dementia. Do something every day. We often think about things to keep the mind busy, but we sometimes forget about the body. It takes both to make an impact on their well-being.
Those dealing with Parkinson’s disease know that movement and breathing exercises help them to maintain strength and independence longer. They seem to be more open to exercise classes and doing workouts at home. Why? Probably, because they have all of their mental faculties, it is their body that is failing them and they want to be as independent as possible.
Does your loved one with dementia wander?
Those dealing with a dementia, such as Alzheimer’s disease, are experiencing brain failure. They become less and less aware of what their body needs, but they need to have something to do. They forget that their body needs movement and exercise. Over time, they lose the ability to reason through the many steps it takes to exercise. These folks need reminders and workout buddies to help them achieve their goals. Many times, they can mimic what they see. Family caregivers can workout with them.
What they can do safely is of great importance. As with any exercise routine, a physician needs to be consulted. Maybe, a visit to physical therapy and/or occupational therapy is a good idea. PT’s and OT’s can help with an exercise program that can be done at home. Any exercise needs to be done appropriately. Form matters. Consistency matters. Never giving up matters.
Rock steady boxing has great results for folks that are dealing with Parkinson’s. Deep breathing exercises and vocal exercises are important too. Walking is good for everyone. Being outside is good for everyone. Playing in the dirt (aka, gardening) is good for almost everyone. So, what, if you have to modify things? Being adaptable is a plus.
Why we need to get tired
Walking, weightlifting and dancing are great exercises for folks that are dealing with any type of dementia. The body needs to work in order to get tired. If we don’t get tired, we get restless. We can’t sleep and we get a little testy. Now, imagine that your brain is failing and you can’t reason out these things. You only know how you feel at this moment in time. You have to get your “willies” out somehow. You wander, you follow people around, and you ask the same question over and over.
Don’t forget about brain use activities. They are important too. Coloring, making something, building something, and doing a puzzle are all important, too. It does not have to be perfect.
I know that some of you caregivers are thinking, “I just want to get X, Y, and Z done.” Let your loved one help, give them a job. Be fully present and engaged with them. It won’t take any more time and it may even take less time because you won’t have all of the interruptions. People with dementia often want to help or contribute in some way. This is another area where daily routines are very beneficial. Set a time to go outside for a walk. Set a time for working out, doing brain work and help with folding towels. Yes, even if they have already been folded. Mess them up and give them to your loved one so they can help.
People before things.
Help your loved one to take care of their exercise needs. Develop your routine and stick to it. Put yourself in “time-out,” when needed. Think outside of the box. Who can exercise with them for about 30 minutes every day? Total visit time would probably be 1 & ½ to 2 hours. I bet you can find other family members or friends that can do that visit. You have to tell folks what you need help with.
Those that have requested to stay at home (age in place), for as long as it is safe for all…will need to be fit, and have some strength and endurance. When they become “dead weight,” or can no longer toilet themselves, they will have to begin the transition to assisted living and nursing homes. It is possible to keep them at home with 24/7 in-home care.
Strength and balance exercises are very important.
The health benefits of exercise include:
Improved mood
Better sleep
Reduced likelihood of constipation
Reduce or prevent wandering
Reduced aggressive behavior
Reduced risk of falls
Increased maintenance of motor skills
Improving heart health
Improved strength
Improved balance
You may start with 5 minutes a day and increase a minute or two every week.
Dancing counts. Playing golf counts. Running errands counts. Riding bicycles counts. Walking on a treadmill counts. Yoga or Tai chi counts. Vacuuming and folding laundry counts.
For the mind:
Do a puzzle
Play a board game (Connect Four, Chutes & Ladders, Checkers)
Read a book aloud to them
Play a card game
Reminisce (ask them about childhood, hobbies, work life)
Invisible Illness: how do you get others to “see” what is happening to you on the inside?
If it hasn’t happened to them, they have no idea what is going on. But, a lot of them have an opinion about how you are; how you should or should not feel. Even if they have experienced it, it may not be the same as how you experience it.
March 9, 2022
We are all different. Our life experiences are different. Our pain tolerance is different. Our bodies are different. Sure, they are comparable, but they are not exact. We metabolize foods and medications differently or not at all. So many variables affect our immune system. So many things affect the inflammation inside of our bodies.
Biological processes are variable. Cultural traits are different. Genetic make-ups are different. We all have special qualities. We have our own body type.
When did healthy become based on appearance?
You can be really thin and be very unhealthy. You can be overweight and be really healthy. People of all shapes, sizes, weights, can either be healthy or unhealthy. You are in your body 24/7 how do you feel and what is going on with you? Is your body nourished with the foods that it needs? I am not talking about stress eating or emotional behaviors, just plain old giving your body what it needs to function at its highest level. Food, hydration, rest, activity and sleep are all important for a healthy body.
What happens when a body has an autoimmune disorder? An autoimmune disorder is a condition when your own immune system mistakenly attacks your body. It destroys healthy body tissue by mistake.
What happens inside the body of one with an autoimmune disorder
How would you think a person might feel while all of this is going on inside their body? They have pain, tiredness, fatigue, nausea, rashes, headaches, dizziness and more depending on what disease they have. They feel these things, All-of-the-time, because they have these things all-of-the-time. It would be rare for them to not to feel bad because their body is under attack.
My hope is that these folks are working with their doctors and other health care providers to find out what works best for them and their needs. To have the best quality of life possible. I only want folks to take the medications that they need. To use other means to help manage their conditions. Nutrition, hydration, strengthening, mindfulness-based stress reduction meditation, stretching, rest and activity. It takes all of these things plus medications to improve quality of life.
I get it. It is hard to do all of these things, work full-time, have a family life, friends, etc. Don’t look at it as giving things up. Look at it as caring for yourself to improve your energy and strength so you can spend more time with those that you love and do the things that you enjoy doing. Your friends and family can do all of those things with you, except, take your medication. It is probably easier to have a work-out buddy to keep you engaged and committed to the routine. That is the key anyway. It will become a routine and then a habit. Once it is a habit, you no longer have to use a lot of brain energy to figure out all the particulars.
Chronic disease is hard on everyone
Living with a chronic disease is hard. It is hard on the person that has it and it is hard on those that love them. It sucks to make plans and then they get cancelled because of a flare-up or a bad day. Once or twice, you can usually get over it, but more than that, it begins taking a toll on all involved.
No body wants to make plans because they get cancelled. A wall begins to build up. Everybody is pissed and nobody is talking to nobody about the elephant in the room. Maybe, it is because you don’t want each other to feel bad? Maybe, it’s because, you know that sometimes shit happens and you have to adjust.
It is great to realize all of that. You must also talk with each other about it. How you see things, how it makes you feel and what you want. You aren’t really mad at each other; you are mad at the situation. If you are mad at each other, I suggest you go and get counseling now. It does not matter if it is a partner relationship or a friend relationship, you do need help in navigating these issues.
Non-medical messy side of chronic disease
Too often, only the medical side is addressed. No body wants to deal with the messy part of a chronic illness. The parts that leave families strained and sometimes broken. You have to deal with the messy parts. Once you do and you have a workable plan, it can make all the difference in your relationships. It is not easy, but the results are worth it. In my business, I deal with the medical side and most parts of the messy side. If you need a therapist, I will recommend that.
Learning and understanding what is truly going on with a person that has a chronic illness is eye opening. Being able to modify plans or activities will improve relationships. You want them at their best, so what are you going to do to help them get to their best? Can you relate to what they are experiencing?
Pain is subjective. We all have different tolerances and what may be a 10 (the absolute worst pain you have ever had) may be a 3 or 4 (mild to moderate) to me. I am sure you have heard people state that they have had a kidney stone and it was the worst pain possible. It has to be worse than having a baby. Why? Because you “say so?” Because the pain you experienced was the worst pain in your life does not mean that it was worse than the pain of childbirth. Some of you mom’s that have had both can speak to this. I have heard a few moms say that childbirth pain was the worst and I have heard a few moms say that the kidney stone pain was worse.
Chase the Rabbit
Here comes a rabbit chasing. No one needs to suffer from uncontrolled pain. I understand that all pain cannot be eliminated and that is not really the goal of treating chronic pain. We treat chronic pain to help those with that type of pain to live the best quality of life possible. An active life. A fulfilling life. Managing the pain to a tolerable level is the goal. Treating chronic pain takes a multi-prong approach. Medication alone will not provide the relief needed. Strength training is one way to reduce pain. Running or walking is another way to reduce pain. Eating for nutritional needs, is yet, another way to reduce pain. Hydrating every day is another way to reduce the pain. It is all connected. Yes, I know there are many different types of pain. Thus, the multi-prong approach. I don’t believe in cookie cutter approaches to treating pain. People are different, their pain is different, their tolerances are different, medications work for some, but do not work for others. It is very easy to get frustrated when every thing that you try does not work. I use a combination approach with my clients and that seems to work better for pain relief and pain control. It will take effort, some fine tuning to the plans to get the right combination that works for you, but it will be worth it. Rabbit chasing over, for now.
After a while, folks just give up. The one with the chronic illness and the one without the chronic illness, just give up. If your loved one has a chronic illness, help them to become they best they can be. Encourage them to take back control of their life. Help them to focus on the solutions and not the freaking problems. What can they do? What can they improve? What will it take to help them? You can’t make them, but you can encourage them, believe in them and help them when they ask. You can’t do it for them and they do get to decide what they will or won’t do.
To the one without the chronic illness, you need to take a look at your beliefs about the one that has the chronic illness. This may get ugly. Do you understand what they go through every day? Do you understand that they feel like they let everybody down? Do you understand your part in not being able to go and do? Are you becoming an enabler to their lack of action or lack of participating in activities? There are other things, but you get the idea.
Don’t give up! There are things to try. There are things that will make your life easier. Get ready to look forward to activities again. Yes, you have to think about getting ready. You have to reason it out in your mind. The negatives will come rushing at you. All of the “you have tried this and it didn’t work,” thoughts will flood your mind. It may not have worked then, but it is possible that it will work now by doing “x,y and z.” If you are not open to the possibility that things can get better and actually be better, then they won’t.
Who do you need on your healthcare team?
Who do you need to add to your health care team? Me? A sports psychologist? A nutritionist? A therapist/psychologist? A trainer? A workout partner? A deal with my anger and other emotions therapist?
An autoimmune disorder may cause destruction of body tissue, may cause an abnormal growth of an organ, or even cause changes in organ function. The areas most often targeted are blood vessels, connective tissue, joints, muscles, your skin, red blood cells, your thyroid or your pancreas and other endocrine glands.
Very few of these disorders can be seen. It is all happening inside the body.
Here are some of the most notable autoimmune disorders:
Next time, we will touch on other non-visible health conditions such as migraine, depression, heart disease, etc.
Are my prescription medications helping me or hurting me?
Have you ever wondered if the medications that you are taking or someone that you love is taking are helping you, hurting you or even working at all? Have you ever wondered if you are having an unexpected reaction or side effect to your meds?
What is pharmacogenomics?
Pharmacogenomics is the study of how genes affect a person’s response to drugs. This relatively new field combines pharmacology (the science of drugs) and genomics (the study of genes and their functions) to develop effective, safe medications and doses that will be tailored to a person’s genetic makeup.
This definition is from the U.S. National Library of Medicine
Basically, your genes affect how and if certain medications are metabolized in your body. And why is that important? Because you need a medication to be therapeutic (to do its job well). Some drugs, called prodrugs, are inactive when administered (taken) and then they are metabolized into the active form to provide benefits. What happens if you cannot metabolize that medication into its active form? It will be like taking water. It won’t do anything because your body cannot change it into its active form. What if you take a medication and your body rapidly metabolizes it too quickly? You will not get the benefits of an Effective therapeutic dose. You are burning through it too quickly. What happens if you metabolize the medication very slowly? It can build up inside your body and cause more and more problems along with more intense side effects. Most medications are metabolized in the liver and excreted through the kidneys.
Metabolism, liver, kidneys, liver enzymes, excretion rates, inactive and active metabolites, metabolism rates, phases of metabolism, blood flow, changes in liver volume, etc. all of these things come in to play. What I want you to know is that you can find out how you metabolize certain medications and you and your doctor can decide what medications are best for you and your particular needs. You can also find out if you need more or less of a certain medication. Do the test once and use the information the rest of your life.
What are some of the benefits to having this test?
Helps your doctor find the medications that may work best for you
Helps you to know which medications to avoid
Helps you to know which medications dosage may need to be increased or decreased
Severe drug reactions can be reduced or eliminated
Stops the trial-and-error method that usually takes months to see if it helps or not
May help decrease opioid dependency
May increase pain relief
Bothersome side effects may be decreased or avoided
Do it once and use the information the rest of your life
Who can truly benefit from this test?
If you have been diagnosed with:
Depression
Anxiety disorders
Obsessive-compulsive disorder
Dementia
Autism
Insomnia
ADHD
Schizophrenia
Pain
Lipid disorders (high cholesterol)
Alzheimer’s disease
Parkinson’s disease
Multiple Sclerosis
Breast cancer
Epilepsy
Cardiovascular disease
Asthma
HIV/AIDS
Autoimmune disorders
Check-out the Medications that are impacted by your genes.
Go about midway down the page and click on the blue bar that has the RightMed® Medication List
**Remember, some physicians prescribe medications for off-label use, which means they are using it for something other than what the medication is approved to treat. **
My own experience with pain medications has led me to encourage others to take this test. I had arthroscopic shoulder surgery in the early 1990’s. They sent me home with Percocet® (Oxycodone and acetaminophen) and Phenergan® (promethazine). I get home, ice and take my medications. I am out like a light in about 45 minutes. Now, I had never had any type of pain medications before and I don’t remember having any anti-nausea medications as an adult. After two hours, I am apparently whining in my sleep. I am awakened and I am hurting, but I am so sleepy. The promethazine is kicking my ass and I cannot wake up. The pain is fairly intense. Over the next 24 hours I am taking my pain medications as directed and only taking half of the promethazine. I do believe that the only thing that was helping me was being knocked out by the promethazine. I called my doctor and told him that the Percocet® was not working. He told me that was the strongest that they have. I know that’s a lie, I am a pharmacist. I understand that doctors are concerned about drug seekers, but hell, I just had surgery the previous day. He called in Tylenol#3 (acetaminophen and codeine). I took that and guess what? It did not work either. I knew that I was screwed and would have to deal with this on my own. I iced, I breathed deeply and I took a half a tab of promethazine every 8 hours and Ibuprofen 800mg every four hours. I am thinking that I never ever want another surgery in my lifetime! After about 5 days, I could stand it. Then came physical therapy. You do what you have to do. I cannot imagine what I would have gone through if I had anything other than an arthroscopic surgery.
As a pharmacist I knew that not every medication worked for every person. We all knew that; we just did not know why. We knew it had to be something inside our body make-up, but what? We knew that when Ultram® (tramadol) came out that it worked for some people and it did not work for others. I believed people when they told me that certain medications were not working for them, and I would have them ask their doctor to try X, Y, or Z. Just because something is “supposed” to work does not mean that it does work for all people.
Funny how when we don’t really have the answers, that we tend Not to believe it could be happening. We doubt the person and not the medication. Well, no more! Now we know that some medications are impacted by our genes. I now know that I cannot metabolize Percocet®. My body cannot metabolize Tylenol#3® nor can it metabolize tramadol. They are pro-drugs which means they need to be converted into the active form inside the body in order to work. So, I was taking sugar pills for my body. I have a genetic “defect” for CYP-2D6. But, by God, I now know what will work for me and the dosage that I will need. I have the tests to prove it for all the skeptical physician’s worried about drug seekers. My primary care physician has a copy of it in my records and now I tell them to call him for the results, if they want.
So, if you are going to have a planned surgery and you don’t know what pain meds work for you, it might be worth it to have this test. I know that it is expensive and it is going up after the first of the year (in 2022). Only you can decide what is of value to you. It was valuable information for me and I can use it the rest of my life. No more waiting and hoping. No more wondering for months on end. No more wasting money and time.
Have you been diagnosed with depression? Have you been started on a medication? What did your doctor and pharmacist tell you? Hopefully, they told you to take it at the same time each day, do not miss doses and give it 3 months. You do. It doesn’t seem to have helped very much, maybe a little. You return to your doctor and he or she takes you off of that medication and you begin again with another medication for 3 months. Nope, this one is not helping and you are now dealing with sexual arousal dysfunction. You return a third time, maybe or you stop going back and just suffer. You are 6 months down the road with no real results to speak of. Six months of your life that you will never get back. You tell me, what is that worth to you and your family?
Are you a chronic pain patient that want the best quality of life possible? Let’s find the medications that will work for you and not wipe you out. Let’s find the right combination to help you to get back to living. I know that you will not be pain free, but you have every right to expect it to be manageable.
Everyone deserves the best quality of life possible for them.
Do it now, before the price goes up in January 2022.
Most HSA’s and Flexible Spending plans allow coverage for this in-home test.
Pat
The 5 different types of metabolizer status are described below.
A person who is a “Poor Metabolizer” for a medicine will process that medicine very slowly. The medicine might not work if it is processed slowly, or it could put them at risk for side-effects.
A person who is an “Intermediate Metabolizer” for a medicine will process that drug slowly, but not as slowly as a poor metabolizer. This means that the normal amount (or dosage) of certain medicines may not work for them, or may cause side-effects.
A “Normal Metabolizer” for a medicine usually benefits from the normal amount (or dosage) of the medicine. This means the metabolizer status does not put them at increased risk for side-effects.
A person who is a “Rapid Metabolizer” or “Ultrarapid Metabolizer” for a medicine can process the medicine very quickly. A medicine might not work if it is processed very quickly, or it could put the person at risk for side-effects.
Right, Wrong, Good, Bad – those are the words we use to describe our decision-making choices. What makes a decision right or wrong? What makes a decision good or bad? Yeah, I know, it’s like porn. You can’t describe it, but you’ll know it when you see it.
A decision that is right for you may be wrong for me. A decision that is good for me may be bad for you. Hang on, here we go… Your perceptions and life experiences are your guides. Your gut feelings are tied in to past experiences and results. Sure, we all like to think that our decisions are made with great care and a lot of thought. Wait, I need to throw my bullshit flag.
Hear me out before you take your toys and go home. All of us have unknown biases. All of us have tunnel vision on certain issues. All of us hate the idea of even making a “wrong” decision. It is one thing to make a wrong decision for ourselves, but let that decision affect other people that we love and that piles on the stress, pressure and worry. I never want to hurt the ones that I love. I always want to make the best decisions possible. I especially want to make the right decision when it affects those that I love.
How can we make the best decision possible when we don’t recognize our biases? How can we make a good decision when we really don’t know what good resources are? To me a good resource is a trusted resource. A trusted resource often educates. A trusted resource is NOT an advertisement. Use the CRAAP test. See the bottom of the article for a worksheet.
Facts vs Truth
Facts are Facts. You don’t have to like it. Truth on the other hand takes in to consideration you own views, beliefs and ideas about a subject and sometimes you throw facts in the mix. Unknow biases. Question why you believe what you believe. Be skeptical. Can you accept what you have thought or believed most of your life could be wrong? How did that last word “wrong” make you feel? We do not want to be “wrong” ever! Change the word “wrong” to incorrect and see how that makes you feel. Can you accept that your friends and families’ beliefs and opinions may be incorrect? I am able to accept that I am incorrect. I am not inclined to believe that I am wrong. I get defensive if I am “wrong.” I can’t stand to be wrong! That is why I will do my research from trusted sources. I may not like what I have learned, but at least I know the facts and I can then figure out what will work best for me and my loved ones. Find three trusted resources and read the information using the CRAAP test information.
Be open to learning something new. Be curious. Let yourself ponder and think. We try to control the outcomes with our decision-making. Have you heard the phrase, “trust the process?” Why do people tell us that? Because we cannot control the outcome. We can only do our best. Sometimes, it is making a decision with the information that we have, right now. We may need to change our decision or update as we learn new information. That is okay. When we know better, we do better.
Regret the least
What happens we are faced with NO good choices? What do we do? How can we decide?
We make the decision that we will regret the least.
Get rid of the “should.” Every time that you say or even think the word “should.” Stop and change that word to “Want.” What do I want? How do I want things to go? What do I really want down the road? Take time to think. Think through your options. Brainstorm and don’t dismiss anything, right now. You can pare down later. Are there compromises or alternatives?
What are your values, wants and needs?
Talk it through with a good listener. Tell them you are talking and you just want them to listen.
Maybe you need someone else’s perspective (maybe someone who has been in a similar situation).
Test out the decision in your mind. Go all the way through. Remember, you cannot control the outcome. How will this affect me in the short=term, in the long-run?
Doing something always beats doing nothing.
Listen to your gut. Your intuition is important.
There is not right or wrong decision, only what is best for you and your family.
When all of the choices suck, which one will you regret the least?
Choice overload will cause you to not make a choice. Paralysis by analysis is a real thing. Too much information will keep you on the indecision wheel. Find 3 choices by doing your research with trusted resources. Realize that decision fatigue happens to all of us. Making tough decisions takes a lot of time and a whole lot of energy. You will second guess yourself. Go with what you know and not how you feel once you have made your decision. Accept that there will probably be trade-offs. Know what your values are. What is important to you.
Very few decisions can’t be changed or updated. Try to find a “both/ and” decision rather than an “either/or” decision.
Sometimes you will have to make a decision that you will regret the least. Be kind to yourself.
Pat
The CRAAP Test Worksheet
Use the following list to help you evaluate sources. Answer the questions as appropriate, and then rank each of the 5 parts from 1 to 10 (1 = unreliable, 10 = excellent). Add up the scores to give you an idea of whether you should you use the resource (and whether your teacher would want you to!).
Currency: the timeliness of the information………………………………………………………………………..
• When was the information published or posted?
• Has the information been revised or updated?
• Is the information current or out-of date for your topic?
• Are the links functional?
Relevance: the importance of the information for your needs…………………………………………….
• Does the information relate to your topic or answer your question?
• Who is the intended audience?
• Is the information at an appropriate level?
• Have you looked at a variety of sources before choosing this one?
• Would you be comfortable using this source for a research paper?
Authority: the source of the information……………………………………………………………………………
• Who is the author/publisher/source/sponsor?
• Are the author’s credentials or organizational affiliations given?
• What are the author’s credentials or organizational affiliations given?
• What are the author’s qualifications to write on the topic?
• Is there contact information, such as a publisher or e-mail address?
• Does the URL reveal anything about the author or source?
Accuracy: the reliability, truthfulness, and correctness of the content…………………………………………
• Where does the information come from?
• Is the information supported by evidence?
• Has the information been reviewed or refereed?
• Can you verify any of the information in another source?
• Does the language or tone seem biased and free of emotion?
• Are there spelling, grammar, or other typographical errors?
Purpose: the reason the information exists……………………………………………………………
• What is the purpose of the information?
• Do the authors/sponsors make their intentions or purpose clear?
• Is the information fact? opinion? propaganda?
• Does the point of view appear objective and impartial?
• Are there political, ideological, cultural, religious, institutional, or personal biases?
It cannot be done, you must take a break before your break! It started out as a few hours a week. An afternoon here. An evening there. A Saturday or two. You handled whatever arose. No big deal. You love them and it was manageable. It happened so slowly that you did not even realize that you became a caregiver. You were helping out. Funny how when we are in the big middle of stuff that we do not realize how long it has been nor do we have any idea how we got “here.” All caregivers need a break.
“Here.” Hmmm, where is your “here?” Think about it for a few minutes. How long ago did it start? What did your life look like then? What does your life look like now? How many different things are you juggling? Partner, spouse, kids, work, career, friends, community activities, church functions, or even your own health care needs? How many things and people have you neglected? Regular breaks help you to stay connected to all of your loved ones.
Caregiver burnout, just ahead
Are you a caregiver that feels you must always be on call? Are you a person that feels you must always be reachable or be close, just-in-case? It isn’t just caregivers that feel that way. I have found that if you are or feel you are responsible for someone or something you think that you “need” to be available and ready at all times. You must be Superwoman. You must be Superman.
When you feel that way and act that way you have no freedom. You have no down time. You have no “me time.” You probably don’t have much family time either. It sucks. You want to rest, relax and recharge. You want to turn off your brain and just chill. You don’t want to be tied to your cellphone. You want to go out to eat with your family. You want to enjoy sporting events, plays and church. You want to enjoy those around you. But, how can you do all of that? How can you do that and be “on call?”
You can handle most anything, for a while. It is the continued drain on your time and energy that will wear you out. Have you figured out how to rest, relax and recharge without taking a break, yet?
Family caregivers do need a break
You cannot rest, relax and recharge without taking a break. A mental break and a physical break are required. You will feel guilty. Accept that you will feel guilty. Don’t ask for permission from the person you are caring for. Take a break BEFORE you are so worn out that it takes you a week to recover. Even four to six hours once or twice a week is better than nothing. It would be best if you could take one or two days off every week.
Family caregiver support
Can other family members help? They probably will if you tell them a day and time. Do not leave it up to them to decide a day and time because they won’t. It is not mean or ugly to have a day or time picked out. If they truly cannot, go on to the next person. Keep going. For some, it may be easier to have a set time or day every week. You may have to hire outside help. I get it, it isn’t cheap. What is your physical and mental health worth? You can always check-in on the care giver/companion.
If your loved one has a dementia, like Alzheimer’s disease you may have to be subtle with adding in-home help. You may need to use other words and phrases. Do not use “Sitter.” You may not be able to use the word “caregiver.” You may have to use “your helper around the house, or help with meal prep, even help with light housekeeping.”
Other emotions may pop up too, so don’t be surprised when shame or fear show up. If you are feeling resentment, anger or burnout you NEED a break NOW. When your “give a damn doesn’t give a damn anymore,” it is past time for time away. Caregiver fatigue and burnout are very real and they can lead to your own set of illnesses. I want you to take care of yourself. Breaks and time away help you to be an even better caregiver.
Signs of caregiver burnout
However, if you notice these signs of caregiver burnout, it’s time to take your health seriously and give yourself a well-deserved break:
Feeling “trapped” or hopeless
Losing patience or compassion for your loved one
Overreacting to small accidents
Resenting or neglecting your loved one
Withdrawing from your personal hobbies and friendships
Oversleeping or not sleeping enough
Overeating, not eating enough, or eating a lot of high-sugar foods
Having health problems
Abusing drugs or alcohol
Having thoughts of suicide
You are impatient with your care receiver
You are making mistakes (medications, appointments, etc.)
You feel lonely
You have snapped at your care receiver
You feel exhausted most of the time
You are bored
You are experiencing memory problems
You are experiencing signs and symptoms of depression
Your own relationships are declining
Design a plan that works for you and your family. What are the needs and who can fulfill them? Take some time to think.
What do you need? Be specific. Three hours off twice a week? 24 hours completely away? A regular day or night off to be with your spouse? A night off to be with your friends?
What does your loved one need? Meals prepared? Laundry? Shopping? Personal care? Haircut? Daily walks? Help with medications? Companionship? Light housekeeping? Taken to doctor appointments? Yardwork?
Who can pitch-in? Tell everyone what is needed. Have a sign-up sheet. Have a day in mind, but try to be flexible, Maye they can’t help on Wednesday, but they can help on Thursday.
Sometimes, you may have to have a family meeting or as I like to call them. “A come to Jesus meeting.” If you find some family members unwilling or unable to help…help them write a check for respite care or handle some of your things at your house that needs to be taken care of while you are away from your own home.
Find respite care
Look online for Respite care in your area.
Look at in-home care, non-medical for companion care.
Check out your local area’s Office on Aging.
Search for Adult daycare facilities in your area.
What are the benefits for taking a break from caregiving?
It can prevent you from having an emotional breakdown.
It provides you time to take care of your own personal business.
Having other people ready to take over should you become ill or have to be away.
It may provide you with a different perspective.
You are better able to make necessary decisions when you are clearer headed.
You will decrease your stress, which will improve your own health.
You get to re-engage with your own spouse, partner, children or friends.
You will be a better caregiver and manager for your loved one.
What was the first big obstacle that found its way right in the middle of your path? You know, the one that kicked your ass. The one that made you doubt everything that you though you knew. That situation that you did not think you would survive. You got a punch to the gut or maybe a rabbit punch that you did not even see coming. It happens to all of us.
How long do you need to catch your breath and get your legs back under you? Yes, you got knocked down and it hurts. You waller for a little while or a long while, but eventually, you do get up and move forward again. It is only when you stay down and waller that you feel broken. Notice that I said, feel. We all know that our feelings can lie to us. Our thoughts mess with our minds too. Just who is in charge here? You learn to go with what you know and not how you feel. It is simple but it is certainly not easy. You keep having conversations or fights inside your mind.
When nothing is working
Nothing that you try is working for your loved one. Doctors are not helping. A decline is happening and you don’t know what to do next. One thing after another keeps piling on. Your shoulders can’t take much more and your knees are beginning to buckle. What do you do next?
If you are smarter than the average bear, you take a time out, rest and recharge for two or three days and then look at things with fresh eyes. Maybe you call a meeting of the minds and brainstorm for options. Maybe it is time to call Pat and get a plan of action with options to access when you need them. Yes, that was a shameless plug for my services.
Making decisions under stress is a set-up for failure. Sure, it may work for a few days or even a week, but eventually, you will be dealing with a much larger problem and much more stress. Managing by crises is exhausting and you never get rested. When you are under abnormal stress your body dumps cortisol and the other stress hormones. This dumping of hormones activates the fight, flight, freeze or fawn types of reactions. You cannot physiologically make a rational decision. Your brain has been hijacked. You can make a decision or choice but it will not be a rational or logical one. You are really reacting to a perceived danger and will do whatever it takes to feel safe in the moment.
Regret. The feeling that you feel about 30 minutes to an hour later. You find yourself trying to reason out what in the hell has just happened and what is going on now? Oops! You don’t have the time to ponder that. Something else needs your immediate attention. Off you go. Your brain has been hijacked again because of another stress hormones dump.
Stop beating yourself up, manage your stress and build resilience
Why do you feel broken? Have you failed at something? Are you beating yourself up for either making a mistake or not having good information? Are you just exhausted and running on auto-pilot? Maybe, you feel that you are only existing. You are not in control of anything and you cannot seem to get a handle on things. This expands to your whole life. Everything is running together and there are no clear boundaries anymore. Overwhelmed is what you are. You are not okay. You are grieving. You need permission to not be okay. Will you allow yourself too not be, okay? Will you tell someone that you are not, okay? Will you accept yourself as you are or will you still fight it? Will you let yourself feel your feelings? Yes, be still and feel your feelings and emotions without judging them. Let them be how ever they are. It is one of your body’s defense mechanisms to protect itself. You don’t have to solve anything, right now. Now is the time for accepting yourself just as you are. Maybe you feel broken because you are heartbroken.
Crap is changing and we do not like change. It is hard to change. It is hard to accept change. Acceptance of what is, right now, is one way to begin moving forward. If you have ever lifted weights, you know that it is hard to build muscle. It is painful. It is time consuming. You must give the muscle rest for it to grow and get stronger. It is the same way for us as care givers. We must learn new things. We must accept things that we do not want to accept. We must rest, accept and recharge to get stronger.
Sure, you can fight feeling your emotions and fight changes and even fight accepting things as they are now. You can stuff that shit down. Eventually, all that pressure will keep building up and escaping as a little steam (ranting and raving) until you are completely overwhelmed and explode leaving a damaging and sometimes un-survivable blast radius (relationships, job, friends, kids).
Tips for being more resilient:
Get more comfortable not knowing everything. We all want to know “why?”. There are times we will never know “why?’. Always wanting to know “Why?” will keep us stuck. When there is a feeling of being stuck, you will not move forward. Carl Yung says, “What we resist, persists.” So, stop resisting and learn your lesson, then move on.
Can you find some joy in what you are doing? Do you know “your why?” Learn to refocus on what truly matters. Learn to refocus on who really matters. You learn that you don’t have to give in to every whim of your feelings. Feelings can change quickly.
Feeling broken is an illusion. We have biases both known and unknown. Our feelings will lie to us and our emotions will fuel our beliefs. Our beliefs are linked to our perceptions of what is or what should be. Our beliefs determine how we interpret and feel about the events that happen in our lives. I don’t know where I read this or heard this, but it seems to be true. Once we form our beliefs, our mind has a natural tendency to search for the evidence to prove them right. It is not what happens to us in our lives that creates the experiences that we have, but it is our beliefs about those events that have happened. Basically, you can change how you view stuff if you challenge how and why you believe what you believe. Stop telling yourself, “I am broken,” “I can’t,” “I will try.” Every time I hear the phrase “I’ll try,” it reminds me of the character Yoda that says, “There is do or do not, there is no try.” I also heard it from a counselor that stated if you say “I’ll try” you are giving yourself a way out. So, do it or don’t do it.
When your give a damn, can’t give a damn. Find three things that you are grateful for every day and write them down.
Become more aware of when you are susceptible to feeling broken.
You are tired.
You are frustrated.
You feel nothing.
You begin beating yourself up.
You feel the “woulda, shoulda, coulda’s”
You feel shame, guilt or anger
When things become uncomfortable, you shut down.
When you feel some of these things, remember your goal or set a new goal. You need something to focus on. Something to bring you back to center. I am not saying stuff your emotions, I am saying do not let them get in control and hijack your brain.
Responsibility and discipline. They can be scary words and even scarier to accept and work on.
You are responsible for your own resilience
You are responsible for yourself and your own feelings. No one can make you feel anything, you get to decide. Discipline is when you decide what you will or won’t do.
You may be a little bent but you are not broken so stop trying to “fix” yourself. You just have some feelings that you need to deal with. Set a small new goal. Be consistent and achieve your goal. Keep going. Set another goal, and another and another. Keep growing. Keep getting better and better. Stronger and stronger. When you get knocked down, take a breather and get back up and move forward again. You don’t go back to zero, you begin where you left off. Give yourself permission to let go of old hurts. Give yourself permission to let go of the need to always be in control. Fuel your body with good nutrition. Hydrate. Move your body. Have compassion for yourself.
You are running around, feeling like a piece of taffy being pulled in six different directions at one time. Pulled by your job, pulled by your partner, pulled by your kids, pulled by your loved one that needs help, pulled by your own home chores, and pulled by your social obligations. Being a caregiver piles on more stress.
Many of us have felt that pull, with no end in sight. You are handling one problem after another and they aren’t crises, they are just everyday stuff. The mundane stuff even. The yard needs to be mowed, the car needs an oil change, this kid needs to go here at 6 and the other one needs to be there at 6, you need to make a hair appointment, there is a doctor’s appointment that you need to attend with your loved one and you project at work is coming due.
If you are a control freak, like I am, then you must have a plan and work the plan. There is no room for additions or changes to said plan once the plan has been figured out and ready to be implemented. It does not matter how well you have planned the who, what, where, when and how…something always arises to throw a monkey wrench in the works. Oh hell, now what am I going to do? Hopefully, you have learned to pivot.
The monkey wrenches that caregivers face
First, you have to determine where and when this monkey wrench will have to go in the plan. Is there a place or a workaround? If yes, then we are still good to go. But what if the monkey wrench blows up the plan? We scramble. What can we drop or pass off to someone else? What can we change or delay? All of these thoughts are running through your mind and you are running through the scenarios with the possible outcomes. You are also pissed that your plan is being messed with. You get madder and more frustrated by the minute. Your physical and mental health takes a hit.
What else is running through your mind? Be honest. If my brother would just help out more (or even a little), things would be so much easier. If my sister was not such a drama queen, we could work together and things would be so much easier. Why am I the only one taking care of this and making sure it gets done? I have a big project that I am working on and I do not have time for all this extra work and stress. Dinner? What do you mean, what is for dinner? Pizza Hut delivers, that is what is for dinner. Hey, where is my uniform? Did you wash it? The dog peed on the floor. Can you help me with…? All of these thoughts are running through your mind. You don’t realize that your mind is going 90 miles an hour. Why would you, your thoughts have always run through your mind. But now, now it is different. They are more than just thoughts. A lot more. They have become situations. Situations that have consequences and must be dealt with. Caregiving responsibilities increase over time, too.
You have more responsibility as a caregiver
What makes the thoughts different? You have more responsibility. You know that you will have situations arising that will require you to make choices that have a real impact on someone else’s life. It is not easy to explain this to others that have not experienced it. Even if you did explain it, they still would not understand it. For other’s that have experienced it and gone through it, no explanation is necessary. They get it. It is true all relationships are different, wants, needs, and feelings are different. No one will ever know how you truly feel or what you are going through personally. They can’t, they are not in your head, they have not had the experiences that you have had. They can empathize and they may even tell you that they know how you feel. Most of the time what they really mean is, “I know what I went through and I know what you are going through.” They mean well and they are truly trying to help. Our own relationships and our own experiences shape us in to what we are today. I can only look at things from my perspective when I was dealing with my mom and Multiple Sclerosis and my dad as primary care giver. I can only see things that we went through individually and as a family. I cannot imagine not loving your mom and wanting to help in any way that you can. I cannot imagine not being able to speak my mind and disagreeing with my mom or dad and that being okay. Other folks cannot do that, they are not allowed to express their opinion.
I did work with a family that did not really care about their mom. They were in two other states and their mom was in a third state. At first, you think that they do care what happens to their mom, but the more you talk and ask questions the more you find out that they want their mom taken care of, up to a point. That family did not want to be bothered with coming in to see her or to do what was best for their mom. They did not want her needs to impact what they wanted to do in any way, shape or form. I did my job and made the recommendations for their mom and did what I could at the facility she was in (she had great caregivers at the assisted living facility) to provide the mom with the best quality of life possible. I decided that I would never work with a family that did not love or care about their family. If you love them and want the best for them, then we can work together. Does that mean you have to be the “hands-on” caregiver? No, not at all. It only means that you love this person and want them to have the best quality of life possible for them. I am not a hands-on care giver; it is not in my wheelhouse. I am not good at it. I am good at managing and deciding on the care that you need and want. I am much better at visiting, talking with them, going out to eat and being with them than I am providing the hands-on care of bathing, dressing, and all of the other activities of daily living.
We do chase a rabbit or two, don’t we?
What are the three things that would decrease caregiver stress?
Adaptability
Flexibility
Good information
adaptability[ uh-dap-tuh–bil-i-tee ]
the ability to adjust to different conditions or circumstances https://www.dictionary.com/browse/adaptability
Are you able to adjust to different conditions or circumstances? Think back to the monkey wrench being thrown in to your plans. Ho do you react when things do not go according to your own plan? How do you respond? What goes through your mind?
Do you have a sinking feeling? A woe is me, awful feeling? Your plans have unraveled. How could this happen? Everything was set up and planned. Do you try to regain some type of control over the situation? Try to find a way to fix it? I know that I do. I try to fix it, for I must be in control. Look at all the negatives that this monkey wrench has caused. That son-of-a-bitch! (That is my favorite curse word phrase.) How long does it take you to stop looking at the problems that monkey wrench has caused? Fifteen to twenty minutes or much longer? Some folks get stuck and fixate on the negative consequences the monkey wrench caused for days. Do you have the luxury or time to be focused on the imploded plan or would you be better served by working on a solution? Asking “Why?” will always keep you stuck. Ask “How do we move forward?”, will get you unstuck.
You cannot control the outcome, only what you do and how you act
Recognize that some things are beyond your control. I know that this is hard. I also know that when I stop railing about what happened or what went wrong, I am able to figure out a solution and maybe even a newer much better plan You don’t have to like it. You cannot exert your will over something that you have no control over. Look up the definition of insanity.
All is well. All will be well.
Get a grip and look at the overall picture. Is everyone still alive? Then, all is well. All will be well. Take a few deep breaths and tell your thoughts to shut up. You have work to do and your pity party is stifling your ideas.
What is the next opportunity? Okay, this got all screwed up and maybe you feel defeated. Your feelings can and will lie to you. Thoughts are just thoughts until you attach some kind of meaning to them. You do not have to act on thoughts or feelings. Take a few minutes and let your fight, flight, freeze or fawn settle down. Well, it will actually take about 30 minutes for it to really settle down.
Plan implosions or detours can sometimes work out better than what we had originally planned. If you are optimistic and at peace you know that things will work out. You don’t always have to know the how. Sometimes you have to trust the process. At all times you have to trust God to provide you a peace beyond all understanding.
Practice adaptability. It is not natural and it will take effort, but once you learn it you will be less stressed and more in control of your own reactions and responses.
flexibility[ flek-suh–bil-i-tee ]
the ability to bend easily or without breaking:
the quality of being easily adapted or of offering many different options:
the ability and willingness to adjust one’s thinking or behavior:
https://www.dictionary.com/browse/flexibility
Have you heard the phrase, “Be like a willow, bend but don’t break.”? You may feel like you are dealing with so much stuff that you are about to break and those types of platitudes may actually cause you to break. You don’t have to break. You will, if you do not make some changes in your life. You see the three definitions above. Are you willing to make some changes in your own thinking and behaviors? Are you willing to take care of yourself physically, mentally and emotionally so that you can be a productive, able-bodied caregiver? Or are you going to stay as you are and be completely miserable? Being a care giver does not have to be awful. Being a care giver does not have to wreck your life. Being a care giver can be a blessing. It is not easy, but it may be worth it. Most of the time you cannot change the situation, but you can change your attitude.
Manage your stress to help prevent caregiver burnout
Manage your stress. Do not suppress your anger, rage or resentment. Deal with those types of feelings in a healthy way. You always have choices. You will feel distressed. You will always wonder if you are making the right decisions. Try accepting the situation as it is. Just because we accept the situation as it is, right now, does not mean that we don’t seek solutions and better ways of doing things. I will never give up on a person. I will always do my best to find doable and workable solutions for them to have the best quality of life possible as well as the whole family. Along with accepting things as they are, what can you be grateful for? It is hard to train our minds to find the positive things or things we can be grateful for. Our minds automatically go to the worst-case scenario or to the “problems.” Pay attention to what your thoughts are at certain times of the day or when you have a headache starting or a lower back pain issue. Do you find yourself thinking about all the “bad things” that may happen or all the ways things can go wrong? Have you noticed that the worst things rarely happen?
What makes you desperate? Pain? Uncertainty? Pressure to make a decision? Inability to find good information? Not having a strategy? Unable to evaluate the plan effectively and make necessary changes?
Good information
We all suffer from information overload. TMI. What is good information? How do we know it is good information? Is it relevant to our situation?
You can find most anything online. How do you qualify it as good information? How do you find reliable sources? Public libraries have good databases that you can use. A reference librarian is of enormous help.
Use the CRAAP test.
Currency – When was the information written or posted?
Has the information been revised or updated?
Is the information current or out-of-date for your topic?
Do the links work?
Relevance – Does the information relate to your topic or answer your questions?
Who is the intended audience?
Have you looked at a variety of sources before determining this is the one you
will use?
Authority – Who is the author, publisher, sponsor or source of the information?
Are the author’s credentials listed?
Are the credentials legitimate?
Is the organization legitimate?
Can their qualifications be verified?
Is there contact information available?
Accuracy – Where does the information come from?
Is the information supported by evidence?
Has the information been reviewed?
Can you verify the information in another source or from personal knowledge?
Does the language or tone of the article seem biased or emotional?
Purpose – What is the purpose of the information? To inform? To sell? To teach? To
entertain? To persuade?
Do the authors or sponsors make their purpose and intentions clear?
Is the information fact, opinion, propaganda?
Does the point of view appear to be impartial and objective?
Are there political, ideological, cultural, religious, institutional or personal biases?
So, you see…” They said and I heard” are the two biggest liars in the world.
Pat
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.
Tips on how to be more helpful when assisting your loved one to bathe or shower. These are things that you need to think about when becoming a spousal caregiver. Understanding your own feelings and beliefs in this personal issue. Understanding your loved one’s feelings, wants and beliefs in this most personal area. It is difficult to ask for help with personal hygiene chores when you can no longer do your own self-care.
February 8, 2023
You two have been through a lot. You are a team, usually. You are both independent and self-sufficient. Then, things change and you are no longer self-sufficient. You have become a care recipient. You need help because of a stroke. You need help because of cancer. You need help because of Parkinson’s disease. You need help because of Alzheimer’s disease or other dementia. No matter the reason, your wife needs help with one of the most intimate parts of her life. It could be a temporary help because of surgery,
We don’t think about it much, but we each how our own ways of doing things. We have our own patterns and our own order of doing things. Most partners do not know their significant other’s daily routine. When you are the helper, you must be aware that your loved one has their own way of doing things. They have their own schedule and order in which to do things.
