It is springtime, and you are excited to be outside and doing your thing. Whether it is cleaning up, planting, prepping, or mulching. It is great to be outside, even if you are just enjoying the weather. Time to go inside, get cleaned up, and ready for dinner. All of a sudden, you start itching and you notice a rash on your forearm. Do you think about an adverse drug reaction? Do you think about a drug reaction?
March 1, 2023
You assume that it must be poison ivy or some other weed irritation. Over the next couple of days, the itching is still making you crazy and you are beginning to feel miserable and aggravated. You begin taking over-the-counter Benadryl or some other antihistamine. Two weeks later, it is better, but it is still there.
What is the cause? Yes, it could be poison ivy mixed up in the mulch you spread. Yes, it could be some other weed or, who knows what? It could also be one or more of your medications. Most of us don’t relate itching and redness to a drug reaction. Especially, if we have been taking our meds for a few months.
Adverse drug reactions are not side effects. An adverse drug reaction is always negative and may cause harm to you. A side effect is a secondary effect of a medication, which could be harmful, beneficial, or neutral. Usual side effects are where you see a lot of off-label use of medications.
A drug allergy is a serious matter. Technically, it is an adverse drug reaction. In a drug allergy, your body recognizes “it” as a foreign and dangerous substance. The body then activates the immune system to fight it off. You may see rashes, hives, itching, wheezing or other breathing problems, and inflammation. In severe cases, you may see anaphylaxis, which is life-threatening. True allergic reactions happen in about 10% of adverse reactions.
The time frame is different for a drug allergy and an adverse reaction (usually). In a drug allergy situation, the immune system evens occur within minutes to a few hours after exposure. Rarely, does it occur after 24 hours of exposure.
An adverse drug reaction can occur anytime after exposure to the medication. Where it gets confusing or better yet, forget about it when it happens weeks or months after you begin taking the medication. Some adverse drug reactions can be due to the drug itself or an interaction with another drug.
Symptoms of an adverse drug reaction vary by medication, but common ones include:
· Digestive system bleeding
· Heartburn
· Fatigue
· Sleepiness
· Nausea/Diarrhea
· Lightheadedness
· Dizziness
· Constipation
· Skin rashes
Adverse drug reactions aren’t caught a lot of times. Most of the time the physician sees the complaints as “another problem.” Guess what you get? Yep, another prescription. It takes time and effort to figure out what is going on and what may be causing the problem. This is where you can use someone, like me to help figure things out.
We didn’t discuss intolerance, but it is a possibility too. You cannot tolerate a certain medication or the side effects that may occur. Usually, this has to do with metabolism and your body’s ability to use the medication.
Drugs that most commonly cause Adverse Drug Events that lead to a hospital visit:
Drug reactions to medications happen more than we realize. Strange symptoms may occur such as unexplained drowsiness may be a symptom. The dosage prescribed may be too much for you. Remember, allergic reactions occur fairly quickly after the medication has been administered. Anaphylaxis reactions may occur immediately or within half an hour of administration. Anaphylaxis is a life-threatening reaction. You may see these terms, adverse drug reaction, drug reactions, adverse reaction, allergic reaction, or adverse event and they are almost always talking about an unintended adverse drug reaction. Anyone taking a drug can have reactions to medicines even if they have taken the drug before and had no problems.
You know your body and how it feels. Don’t dismiss things that are happening for more than three or four days. You may not know what it is, but you know that you are “not right.” Yes, it could be the side effects of a drug or it could be a possible adverse drug reaction. Your response to a drug may be different from another person on the same drug. You may know folks that feel this way and maybe they could benefit from my services. Let’s have a chat and see. I don’t know if I can help them or not until we talk and it is free.
Tips on how to be more helpful when assisting your loved one to bathe or shower. Things that you need to think about when becoming a helper. Understanding your own feelings and beliefs in this personal issue. Understanding your loved one’s feelings, wants and beliefs in this most personal area.
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 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.
We don’t think about it much, but we each how our own ways of doing things. They are 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 need to 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.
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 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 know 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.
Guess what? Female anatomy is different from male anatomy. We don’t automatically know 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.
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
Good relationships take work on the parts of both people involved under the best of circumstances. What happens when one of the partners becomes seriously ill or will need help for more than six months? It may be from a stroke, cancer, traumatic brain injury, mental health/psychiatric disorders, spinal cord injuries, dementia, Alzheimer’s disease, Parkinson’s disease, etc.
What happens when relationship challenges rear their ugly head? Will you address it? Will you ignore it? Will you stuff your feelings way down deep? Will you deal with it in a healthy way? Decisions, decisions, decisions.
January 25, 2023
Challenges arise when the changes come. There will be changes. No one can tell you when they will come or what they may be. Deal with them as they come. You can stuff your feelings, but eventually, they will come out. It won’t be in a good way, either. Acceptance is hard. Accepting things as they are, right now is hard. We have to give ourselves grace for every moment.
Learning about their chronic health condition will help you to understand what is happening. Yes, I know there is usually more than one. Accurate information about what is happening and what will come will help you be more prepared to handle situations.
The challenges that cause the most aggravation are:
Toileting and incontinence issues
Showering/Bathing
Eating out
Repetitive questions
Relationship strain
Fatigue
Guilt
Learning healthy ways to cope will help in this journey. Yes, it will be a journey. You will have good times, bad times and okay times.
Things you can do to help yourself destress:
Find things you can do together
Accept that you are doing your best
Breathe, just deep breathe
Have someone you can talk to and vent to
Go for a walk/run
Play a sport
Meet up with friends for lunch
Have a massage
Tell others what you need, no one is a mind reader
Keep your own doctor appointments
Eat for nutritional needs
Sleep and rest
Learn to become more resilient (yes, you can do that)
It is okay to feel your feelings. It is okay to talk about your feelings. It is even okay to not have an answer. It is not okay to act aggressively or become verbally or physically abusive. Physical abuse includes doing things “rougher” than is necessary.
Feeling sadness, anger and frustration are normal feelings. It is how you handle those feelings that make the difference between a healthy relationship and an unhealthy or abusive relationship. Don’t bottle up your feelings, you will eventually explode.
Warning Signs that you Need Help:
Your own health is in decline
You find yourself anxious and irritable
You are relying more on alcohol or other drugs
You are becoming withdrawn
Smoking or eating more
Overreacting to minor nuisances
You are feeling increasingly resentful
You are constantly exhausted even when you are resting & sleeping
You are beginning to feel helpless or hopeless
Backaches, headaches, stomachaches or other physical problems
Caregiving doesn’t always have to be bad or feel like a chore. In fact, a lot of folks find themselves okay with being their spouses’ caregivers. Learn what you need to do for yourself so that you are a more resilient caregiver. Find three things that you will do each day for yourself.
With the start of a new year, most of us think about getting organized and decluttering our spaces. We know that we would feel better, be happier and have the ability to do more. We want it. But, will we invest in the time it takes to get us there? Some will and some will not. Do you see the value of taking time and putting forth the effort to make your life easier, in all areas?
January 4, 2023
What you value, you will make time for. What you value, you will do. It is that simple. It doesn’t matter if you “would like to” or if you “need to,” or even if “I have to.” None of those things matter. You get to decide what you will do or will not do. It really is a decision that you make.
Nobody likes to do the grunt work. We would all rather do the “fun” stuff, but that is not the way things work. There is an upside. What you take care of now, you won’t have to fool with later and then you get to have more fun. You can get rid of the “I should’s” or the “I need to…” kinds of things and all of the stress that comes with that.
Organization is your friend. Getting organized is a process, it does take time, but it will be worth it in the long run. Think about it, no more searching for 20 minutes and sometimes hours on end. You know where it is and you can go and get it. Being able to put your hands on the information you need is awesome. Think of all the stress you don’t have to deal with because you have your stuff in order.
Organization helps your brain to rest. Your brain needs downtime. That is another article and we will get to that later. Remember, you only have about four hours of focused brain energy every day.
Organization will boost your health. By decreasing your stress, you have already helped your health. You will rest better, sleep better, have a better outlook on life. Organization helps you to control the things that you can control. There are so many things outside of our control, do what you can to manage the things you can.
Organization helps you be healthier. You make time for meal prep. You plan food for your meal times and snacks.
Organization will help you to be more productive. Yep, it’s true. Getting your ducks in the same pond will help you perform your duties better and more easily. They don’t have to be in a row, but they do need to be in the same pond.
Organization decreases overwhelm. How would you like to know who is doing what on each day? How would you like to know what you will or won’t be doing each day? How would you like to know what is coming up so you can make better plans for your days and weeks?
Organization allows for spontaneity and unexpected problems. You know what must be done and can see what needs to be moved to a later date. Things are going to “come up.” And stuff will “hit the fan.” Being able to make adjustments on the fly is what you need and organization helps you to do that.
When you feel things are looming over you, you feel stressed and sometimes, that paralyzes you and then you are stuck. Feeling stuck sucks. It is hard to get moving when you feel stuck. If you are already in motion, then all you have to do is readjust or reorient and keep moving forward.
Start with two areas in your life.
Your work area
Your “To do” list
Your email – read it, do it, delete it, save it in a file folder, and answer it when you read it ** Do email two or three times a day only. Example – beginning of the workday, after lunch, before going home
Meal prep – every Sunday (or whatever day works best for you)
Make time for friends and family
Dedicate 30 minutes – 1 hour to plan your week
Develop a chores list and when to do them
Schedule your workout days and times – walking, running, lifting, bicycling, yoga, etc.
Journalling for 10 – 20 minutes daily
Reading for 10 – 30 minutes daily
Social media scrolling and interacting for a maximum of X amt. of minutes or hours per day and set a cutoff time every evening.
Declutter your home
Declutter your desk
Work from a check-off list
Be consistent! You will get there.
Maybe, you will do better with big bucket areas:
Work
Home
Home life
Bills/Finances
Health
Leisure time/Hobbies/Interests
Relationships
Personal growth
Education/Expanding knowledge
Caregiving
What does organization look like?
Focus on what is important
Identify tasks – pick only 3 things at a time
Delegate what you can
Create To-do list
Use a planner to keep up with the agenda
Use labels/Dividers
Set goals – use SMART system Specific, Measurable, Achievable, Relevant, Time-bound
Track your progress – Are you achieving your goals in the allotted time? Would it be better to block out periods of time? Find what works best for you.
Limit your distractions – unnecessary phone calls, texts, emails, other people
Use a timer
Reprioritize, when necessary
Take a break – sometimes 5 minutes will do and sometimes you need 20 minutes
Deep breathe – to help you decrease your stress and to refocus
Be flexible – bend, don’t break
Do a brain dump – get it all out so you can be creative, solve problems and imagine. Write down everything you need to do, think of appointments you need to make, bills you need to pay, people you need to see, tasks you need to complete, presentations you need to prepare for and make, etc. Don’t censor yourself and don’t put them in order. The goal is to get it out.
Be realistic about what you can complete in a day
Leave space for the unexpected
Eat the frog – Do it first thing in the morning and get it over with. Tackle the most difficult task first.
Work for 25 minutes on one project with no interruptions or distractions, then take a break for 5 minutes (get up and walk around). Keep doing this cycle until you are done or as long as you are productive.
Avoid re-clutter – read it, handle it, throw it away, put it away
Never leave trash in your car
Yes, you will mess up every now and then. It is okay, no beating yourself up. Start where you are and get back on track. The mess-ups will happen less and less. Getting more organized is to help you. It is another tool for decreasing stress and improving productivity. When you improve your productivity you are less tired both mentally and physically.
As long as your loved one is fairly independent, all is well. The time will come when they need you to physically help them. Getting up from a chair. Help with bathing, Help to get out of bed. Help with toileting.
Can you do it correctly and safely for both of you? Think about what can happen if you don’t know how to move and transfer someone correctly. You can wrench your back and then what? They can fall and hit their head or break a bone.
December 14, 2022
Maybe your mom can help you to move, right now. What happens when she can’t and is dead weight? Your dad is able to use safety bars to toilet and shower, right now, but what about over the next year?
Not only do you have to figure out how to help them, but you also have to figure out how to keep yourself from getting hurt while helping them. Are you really in good enough physical shape to help them? Even if you are in great physical shape, do you have the knowledge and training to do the transfers and get them up safely?
There are some online courses or videos for you to access. It would benefit you and your loved one to view the videos and take a course or two. I am sure that many are on YouTube, but be careful to find out where their expertise came from.
Educating yourself and learning new things will help you and your loved one. Be safe. Be safe for yourself. Be safe for your loved one. Learn how to put a gait belt on your loved one and how to use it appropriately. Be prepared to help them up from the floor after a fall. Do you know how to check for injuries Before moving them?
Remember these essential safety tips
DON’T
Bend from your waist
Try to pull your older adult up
Ask them to hold onto your shoulders or neck
Let them use toilet paper holders, towel bars, or other non-sturdy items to help them sit or stand
It may be disease-related or due to other reasons that can be addressed and fixed.
December 7, 2022
You notice that your mom has lost weight. Maybe, she was a larger woman that could lose a few pounds. She tells you that she is not hungry or doesn’t have much of an appetite. She does not appear to be underweight, so you don’t think too much about it.
A couple of weeks later, you see her again and you notice a little more weight loss. The question to ask is, “Are you meaning to lose weight?” Unintended weight loss can become a problem. She also appears weaker and more tired.
Ask more questions such as:
Is your mouth sore or is it hard to chew?
Is it hard to swallow?
Do you feel like you are choking when you swallow?
Have you lost your appetite?
Does your stomach hurt?
Do you have swelling or are you retaining fluid?
Can you only eat a little bit at a time?
If yes, to any of these, a visit to the primary care physician is in order.
Try to find a physical cause. Can they get to the store? Can they cook for themselves? What are they eating? Frozen dinners, soup, cheese, and crackers? Are they drinking enough fluids?
They may be eating, but it may not be enough for their nutritional needs. There is usually an imbalance of protein, fat, carbs, and calories that the body needs every day.
It could be their medications. It could also be dementia or depression. Chronic disease also decreases appetite.
Common chronic diseases that affect (usually decrease) appetite:
Common things that may decrease appetite that is usually self-limiting or can be more easily treated at home.
Cold/Flu
Dehydration – when we don’t get enough fluids we feel sick
Stress
GERD – acid reflux
Sadness
Grief
Problems caused by malnutrition:
Increased risk of hospitalization.
Increased risk of death.
It weakens the immune system, making them more susceptible to “getting” an infection.
It causes muscle weakness and bone loss which can lead to an increase in falls and fractures.
It slows wound healing.
It decreases heart muscle mass.
It causes poor respiratory function.
It increases anxiety.
It increases self-neglect. (Poor hygiene, Unkempt appearance, Neglecting to clean the house, Hoarding, Not wearing suitable clothing for the weather, Messy hair, Dirty nails, Unusual odors, etc.)
**An obese person can still be malnourished.**
**It isn’t always diagnosed in a hospital setting or a physician’s office without information from the patient or family members.**
If you suspect your loved one is malnourished, you may have to be a more vocal advocate to get it checked out. It is perfectly okay for you to speak up and keep speaking up until you have been listened to and someone does a malnutrition lab workup.
A Registered Dietician (RD) can be of tremendous help.
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
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.
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.
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.
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.)
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.
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 your on “stinking thinking.” It could be your perspective and attitude that are the problems.
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.
If they still have their partner, the partner will try to help and cover for them. When they are tag-teaming it is more difficult to figure out what is going on. It isn’t always intentional, but it can be intentional. To be fair, it may have happened slowly and they are taking care of each other the best way they know how to help. Observe to see if the spouse is finishing tasks for them, finishing sentences for them, or making excuses for some type of behavior.
November 9, 2022
No one likes to admit that they may need help. We are all very independent and quite stubborn. Most of us fear losing our mental faculties more than we fear losing physical capabilities. I understand that. Too often, people feel that they are “getting dementia” or “Alzheimer’s disease,” but that may not be the issue at all. Which is why it is important to go through a diagnostic workup. It could be fixable, such as better nutrition and hydration. It may even be a type of depression.
Falls
Pain
Dizziness
Financial difficulties
Short on money
Buying a lot of “stuff”
Gambling
Drinking more alcohol
Prescription drug misuse or abuse
Illegal medication misuse or abuse
Binging on sweets
Financial abuse – from a family member, a friend, or a caregiver
Elder abuse or Neglect – from family, friends, neighbors, or caregivers
Automobile accidents
Driving Infractions or Getting a Ticket for something
Hiding bruises – either from falls or abuse
Eating a lot of take-out
Changes in the way they dress
Closing the doors to rooms – to keep junk hidden, the messiness, or the dirtiness
Limiting driving to short trips and not far from home
Poor personal hygiene – from not changing clothes to not bathing nor brushing teeth
Unopened mail
A few behaviors that may mean they are trying to hide information:
They discourage visitors. It may get to the point of them not letting anyone inside their home. It starts as, “We will meet you at the restaurant.” “The house is such a mess, let’s do it another time.” They may even say that they know “you are busy with your job.”
Hiding mistakes – driving, spending, buying,
They make a lot of excuses for their forgetfulness or their behaviors
Changes in activity – you are looking for changes in their normal routines
Speaking for their spouse
Why might they do some of these things? “Denial (De Nile) isn’t just a river in Egypt.
Denial – If you don’t acknowledge it or talk about it, then it doesn’t exist and nothing is wrong.
Pride – They can’t admit that they can’t do a lot of things necessary to live on their own. We all are an independent and prideful bunch.
Embarrassment – maybe they become self-conscious or ashamed of what they can no longer do. Especially if it has to do with personal hygiene. Embarrassment rears its ugly head when they have some financial difficulties. They cannot afford food, medication, and getting repairs done to the house. It may or may not be any fault of their own.
Fear – of losing their independence
Depression – chronic health conditions seem to cause a rise in depression. Depression is not always the ‘woe is me” stuff.
Depression is not a normal part of aging. It may mimic dementia.
Signs and Symptoms of Depression in folks 65 years and older:
Memory impairment
Trouble retrieving some words
Takes longer to process information and deliver an answer
Depressed mood
They no longer have pleasure or want to do the things they used to enjoy
Noticeable weight loss or weight gain
Sleeping too much or too little
Feeling fatigued
They experience feelings of worthlessness
Having excessive or inappropriate feelings of guilt
Recurrent thoughts of death or suicide
Feel confused
Struggle to pay attention
Be grumpy or irritable
More aches and pains
Move more slowly
Crying spells
Apathy – lack of interest or concern
We always want to rule out the things that can be ruled out. What if it is a lack of nutrition, dehydration, loneliness, or isolation? Those are fixable and doable. If it is depression some medications can help. Shoot, even running has been shown to help mild to moderate depression. Once we know what it is, it really is much easier to handle.
Caregivers need to hear that they are appreciated. They need practical help that almost anyone can help if they are willing to put forth some time and effort. You have said, “If there is anything you need, let me know.” Did you mean it? I am going to tell you what they need and want.
There are really helpful things you can do and say to caregivers or helpers. Last week we talked about what not to do and say. This week we move towards helpful things to do and say.
November 2, 2022
This time we are going to be talking about what you can say and do to help your friend or loved one who is a caregiver. Did you really mean it when you said, “Let me know what I can do to help you?” If you mean what you say and say what you mean then this article is for you. If you do not mean what you say then you can stop reading now. We are going to get into the practical and doable things.
What caregivers and helpers want and need to hear.
Recognition and Understanding – Recognize that what they are doing matters and is helpful. Try putting yourself in their shoes, and be understanding when they are stressed and need to vent. Be understanding that they are exhausted and need a break from both thinking and doing. A short visit to shoot the breeze or watch a movie. Find a distraction when they cannot leave their caree (care receiver).
Time to recharge – Offer to stay or sit with the care receiver for two to four hours so they can go and do whatever they want to do. Are you willing to do this once a week, once every two weeks, or once a month? What day and time? Be specific.
Provide respite care – This could happen a couple of ways. Find a facility that allows for respite care and find a company that provides in-home care so the primary caregiver can get away. Cost is usually the main factor. How many friends, family or church members can donate money to provide this much-needed service? Imagine what a week away would mean to them.
Take them out to eat and to a movie. If you can, pay for the in-home care or find someone to sit with the caree for three or four hours. Most of the time, it really is just being there in case the caree needs something. It is not like you would be asked to do anything medical.
Emotional support – They may need to vent. They may need to talk about what is going on with their caree. They may need to talk about something else.
Feel heard and understood – Acknowledge how hard this may be for them. Understand that they have bad days and feel anger, hate and rage.
Send flowers
Offer to be the communication person – keeps others updated or put info on a website like Caring Bridge
Send a thinking of you text and state – no need to respond
Coordinate the offers of help and support
An email with a joke or two
Remind them they are loved and cared about
Say, “I will be keeping you in my thoughts and prayers, every day and sending you good vibes.”
Share “remember when” stories about your relationship
Share funny stories that you have witnessed
Laughter provides many great benefits – watch a funny video
Say, “I love you.”
Offer to sit with their mom or dad so they can go out with their spouse and kids.
Ask, “How can I be a good sounding board for you?”
What caregivers would like you to do and how to effectively help them.
Yes, it would be great if the caregiver had a list of things to be done and errands to run, but most have not had the time to do one. Maybe you are the one to make the list and place it on the refrigerator so folks can sign-up.
Never offer to do anything that you do not want to do. The look on your face and being told no is more than the caregiver can handle. They will shut down.
Ask, “When is the best time to come for a visit and how can we help during the visit?”
I am coming over on Saturday from 2 to 5 to stay (with your loved one) so you can take a break. Be specific.
Give a Visa/MasterCard gift card of $50 – $100 and say, “Enjoy.”
Pick up a meal from their favorite restaurant and deliver it.
Make a meal and deliver it – use throw-away containers
Make a few freezer meals and take them over.
Set up a meal train to provide meals anywhere from 3 to 7 days a week (ask about likes/dislikes)
Make phone calls and do research for them – if asked
Donations to help cover lost work and medical expenses
Offer to coordinate medical bills, EOB’s and medical claims. Only if you know how.
Give a gift certificate to a spa/massage
Mow the yard (either the caregiver’s yard or the care receiver’s yard or both)
Do laundry – Pick it up and bring it back
Help clean the house – vacuum, dust, sweep, mop, wash dishes, change the sheets, clean the shower/tub and toilet, wipe down surfaces – nobody expects you to deep clean
Clean the gutter
Take their car in for an oil change
Run the errands – grocery shop, pick up Rx’s
Sit with the care receiver so the caregiver can run errands
Take the care receiver to the doctor’s appointment
Deliver a care basket – good snacks, a book to read(nothing about caregiving allowed), favorite lotion and skin care things, gift cards, blanket, neck pillow, board game, cards, Mani-Pedi gift certificate, etc.
Wash and vacuum the car
Rake leaves
Shovel snow
Clean out the refrigerator
Change the air filter
Shred old documents
Help clean out a closet or room
Clean out the garage
Replace light bulbs
Walk the dog
Clean out the litter box
Take animals to the vet
Take animals to the groomer
Wash the outside windows
Clean the oven
Think about the things that you do at your own home. The caregiver needs those things done either that their own home or the care receiver’s home. Find 2 or 3 things that you don’t mind doing and do them. Do the things that you don’t mind doing. Do not do things that you hate doing. For example, I don’t mind doing laundry, taking the cars in for service or cleaning, or running errands. I hate washing the outside window and cleaning the oven and I won’t do them. Other folks have different likes and dislikes. So, what I hate doing, someone else doesn’t mind doing.
Be specific about what you will do and when you will do it. Ask, if that is okay with them and if not, be flexible. Clear communication is important. Do not assume.
It is not a requirement to help out financially. If you can, that would be great but not a necessity. Your time, efforts, and help will mean more. So there is no misunderstanding, be upfront about what you can and cannot or will and will not do. It is perfectly fine to state that you can’t help with the financial expenses, but you can run errands and pick up things that have either been paid for or they can send you with some form of payment.
Most caregivers don’t assume you will pay for things, but they may simply forget to give you a way to pay. Just remind them that you need a check or card.
You may mean well. You may even mean what you say, but you are hurting them rather than helping them. Will you be open to learning how to better support someone who is helping a loved one? It will require some effort and thinking on your part.
October 26, 2022
I have said some things in the wrong way. I really meant to help, to be supportive and available. What went on in my own mind, did not play out well for someone I was trying to help. I had to realize that I was looking at their situation through my own ways of caregiving and what I would have liked help with.
If you truly want to be a help to your friends or family members that are caregivers, you have to buck up and take the time to learn what they need and want help with. No, that does not mean rapid-fire questions. A lot of the time, they do not know what they need or want because they are in hell and too stressed out to think.
What do you do? How about you learn what they don’t need and don’t need to hear?
Judgement – Don’t second guess them or their choices. You don’t know their family dynamics and you are not in their shoes.
Horror stories – They don’t need or want to hear about all the messed up crap that happens in nursing homes or what happened to “so-and-so.” Just shut up, there is no good that can come from that.
Don’t ask what they need – Granted, this is difficult as you may want to help, but you don’t know what to do. Give them the gift of your time. You know the things that need to be done at your own home. Mowing, cleaning the house, laundry, running errands, grocery shopping, and making dinner.
Don’t make more work for them – Don’t just show up, don’t call and say. “the gang is coming over to visit you.” They will feel the need to clean up and get the place cleaned up.
Don’t ignore them – Maybe they can’t attend functions much anymore, but you can keep including them. Update them and let them know that you are thinking of them.
Now we will move on to, “What NOT to say…”
“If you ever need a break, call me.” – What the hell. They do need a break and they don’t have time to go take a shower, much less call you.
“You have to take care of yourself, too.” – Do you really think that they don’t know that? You are adding more stress and guilt, so unless you are offering to sit with their caree (care receiver) so they can take care of themselves, shut up.
“You look tired.” – They are tired.
“I don’t know how you do it.” – They have no choice.
“God doesn’t give you more than you can handle.” – That statement is wrong on so many levels.
“You will get your reward in heaven,” – You have just discouraged them more.
Why do you keep going to visit them, they won’t remember it anyway.” – Their loved one still deserves love and care. They may not remember your name or who you are to them, but they sense and know that you are someone that loves them and cares for them.
“You should put them in a home.” – You don’t get to decide what is best for them and their loved ones. Pretty much, anything that has a “should” or “would” in it ….keep it to yourself.
“I could never do what you do.” – You don’t know what you will or won’t do until you are in your own situation. All relationships are different. All families are different.
“I wish there was something I could do to help.” – Bullshit, you would do something if you wanted to. We will get into the things you can do and say next week.
“You should get some help.” – Do you really think that they haven’t thought of that? Maybe, they can’t due to finances. Maybe, they have hired folks that do not show up.
“How are you doing?” in front of the caree (care receiver) – Really? Do you want them to vent right in front of their loved one?
“You need to find some time to relax.” – I am sure they would love to, but when and how?
“Don’t feel guilty about …” – Feeling guilt is a part of caregiving.
“Everything happens for a reason.” – No, it doesn’t. Stuff happens and we have to deal with it.
“I know just how you feel.” – No you don’t. You may have had a caregiver type of experience, but it is not the exact same. Situations are not exactly the same, people are not exactly the same, and needs are not exactly the same.
“What doesn’t kill you, makes you stronger.” – Do you think this hardship is making them stronger? That is foolish.
“At least it’s not cancer.” – At least it’s not…statements cause more pain to the caregiver.
“Just think positive thoughts.” – Way to go, you have just increased the feelings of guilt and pressure they put on themselves.
“Your mom (dad) used to be a great person.” – Don’t talk about their loved one in the past tense. It is hard enough to watch a loved one decline, without being reminded of what has already been lost.
Think before you speak. Practice what you will say. Say it out loud. How does it sound? Is it uplifting or helpful? How might it be taken by someone who is stressed out and exhausted?
If you find yourself using any of the following, don’t do it. “I think,” “You should,” “I would,” “You could,”
Shut up. I get it, I want to help and fix things too, but some things are not meant to be fixed by you. That is a hard lesson, but a helpful lesson on being fully present and letting them vent. You just sit there and be the listener.
Next week we will talk about what to say and do to help a caregiver.
What does that really mean? It isn’t used as a medical term or a diagnosis, but we all seem to know what it means. It means a mental health crisis. It means an emotional health crisis. It is also known as a breakdown of your mental health.
It happens when you have intense physical and emotional stress, with difficulty coping and you are not able to function effectively or normally anymore. You feel like you are losing control. The stress that you are under may have you feeling anxiety, fear, worry, stuck, overwhelmed, and/or nervous. You are at the point where you can no longer function in life.
October 12, 2022
Everyone is different and everyone will have different stressors and reactions to those stressors. This is way past burnout.
A few things to watch out for:
You call in sick for a day or two (sometimes, longer).
You miss appointments.
You avoid or back out of social engagements.
You have trouble with healthy eating, exercising regularly, sleep, and your personal hygiene starts slipping.
You withdraw from people and don’t want to leave your home.
You lose interest in things that used to bring you joy.
Panic attacks.
PTSD flashbacks
We all have our own “set point” for a breakdown. Losses are a huge part, especially if they are stacked one on top of another. For example, a death, a divorce, losing your house, a terminal illness, being a caregiver, losing your job, family turmoil, severe financial strain, a chronic medical condition (a worsening chronic medical condition), inability to relax, continued loss of sleep, work stress, school stress, etc.
As you can see, a lot of things can pile on. Step away, take a timeout! Get a talk therapy appointment, ASAP. You are no longer able to get out of this situation on your own. Breathe, just deep breathe for 5 minutes.
You will have to make adjustments and learn better-coping skills. You will have to learn to say, “No.” You will have to take care of yourself physically and mentally before you can help anyone else. Yes, you can recover.
Burnout is more common. My wish for all of us is that we take better care of ourselves BEFORE we get to this stage. The same stressors apply, they may not be as intense or as long, but they could be.
Burnout is usually defined as chronic stress related to poor life and work practices, that produce exhaustion (physically, mentally, and emotionally). You are overloaded and overwhelmed. When a person is overloaded and overwhelmed with negative emotions and feelings rear their ugly heads. We have hostility, anger, and frustrations and we don’t seem to be able to cope or handle these negative emotions.
Extreme burnout will lead to a mental health crisis.
This article from Medical News Today, explains burnout very well.
Emotional demands: A caregiver can feel emotionally drained, especially if they are aware that the person they are looking after will not get better despite their efforts. For example, this could happen if a person is caring for someone in palliative care.
Conflicting demands: These are the additional demands a person has outside of their caregiving role, such as looking after children, going to a job, and making time for their partner.
Ambiguous roles: Often, the role of a caregiver is all-consuming. It is easy for a person to lose sight of who they are outside of their caregiving responsibilities.
Workload: Some caregivers may be looking after someone with complex needs. In these instances, it is important a person seeks temporary relief and gets assistance from other carers.
Conflicting advice: In some cases, treatment procedures may change as research progresses. While these changes aim to give people the best care, they can cause a significant amount of disruption and stress if a caregiver has an established routine.
Privacy: Additional clinical support, such as nurses and other healthcare professionals, may visit a caregiver’s home throughout the week. While this can be helpful, it can also take away their privacy.
All of these factors can contribute to a caregiver feeling overwhelmed, self-critical, and drained. If they do not address these feelings, they may start experiencing serious symptoms of caregiver burnout.
Additionally, symptoms can indicate what stage of caregiver burnout a person is in.
The three stages of caregiver burnout are:
Frustration: A person starts feeling frustrated and disappointed that the person in their care is not getting better. They cannot accept that the person’s condition will decline regardless of how well they look after them.
Isolation: After a while, a person may begin to feel lonely in their caregiving role. They may also grow tired of hearing negative opinions from family members, especially if these family members do not appreciate or recognize the time and effort caring requires. At this point, the caregiver may withdraw from friends and family.
Despair: Eventually, a person may feel helpless and isolated. They can find it hard to concentrate, struggle to find joy in hobbies or interests, and avoid social interactions. The level of care they provide may also begin to drop as they spend less time on their own well-being.
Pay attention to your signs of stress and aggravation. If you need help or think that you may need some help, give me a call and let’s have a conversation. We won’t know if I can help unless we talk to see.
Pat
865-684-8771 (leave a message, if I am unable to answer)
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
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.
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.
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.
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.
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 getting rid of the “either/or” and finding the “both/and” to find ways to move forward.
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.
Is your loved one restless? Do they wander? Are they withdrawn? Hurting? Regular exercise and movement will help decrease these issues. 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.
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. 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.
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.
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.
I know that some of you 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 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
Reduced 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)
Why is he doing this? Why is she acting this way? We always wonder why they are acting out or being disruptive, but we don’t always think about what is really going on. What is really going on is that something is bothering them and they cannot tell you what it is. You have to put on your detective hat. I promise you that they are not doing this on purpose.
September 21, 2022
It is hard to deal with a person that cannot tell you that they are hurting, uncomfortable, or scared. They do things that don’t make any sense to us. But, remember you are in dementia land. They have less and less control over their emotions.
Aggression in dementia can become scary and abusive. Aggression can become physical. It may also come out as cursing, spitting, or being verbally abusive to the care partner or helper. The aggressive behavior is thought to be the way that the person with dementia shows anger, fear or frustration.
Overboard reactions include screaming, shouting, making crazy accusations, and becoming agitated or very stubborn. They may also have uncontrolled laughing or crying. Possibly due to misunderstandings/miscommunications or even an underlying illness.
Change in sexual behaviors. The person with dementia no longer knows what to do with their sexual desire or how to address it appropriately. There may be a diminished interest in sex or there may be an increased interest in sex. They may remove their clothes, make sexual advances toward others, fondle themselves in public, or mistake another person for their partner.
Repetitive behaviors include asking the same question over and over and over, pacing, undoing something that you have just done, or word repeating. Give them something to do.
Wandering or leaving. Maybe they are “trying to go home,” or “they are going to work.” You may have to hide “exit cues” or “trigger items,” such as keys, shoes, jackets, purses, or hats. Try to engage with talking or reminiscing while distracting them from leaving.
Sleep disruptions. Dementia affects sleep patterns. Have the doctor rule out other possible causes. Keep them active and on a schedule during the day. They need physical exercise (walking 30 -45 minutes each day). Is the sleeping environment dark, and quiet? Is the temperature in the bedroom comfortable? Make sure they have sunlight during the day and even if they can’t go outside a lot, they can see the sunlight through the windows.
Delusions and Hallucinations: False beliefs, paranoia, and hallucinations may occur. Sometimes, the hallucinations are pleasant and sometimes they are not. Strong emotional memories from their past may recur. They will feel as though they are experiencing them in real time, all over again. If they are not bothered by the hallucination, then leave it be. If they are distressed, talk with the doctor to rule out other causes or to change/update medications. You can acknowledge their experience with a matter-of-fact tone without agreeing or disagreeing with them. You could say something like, “That is interesting.”, “I don’t see that.”, or acknowledge what they have said and move on to another topic.
I saw this article from Better Health and would like to share it with you.
Problems with sleeping are common for people with dementia. Some people sleep during the day and are awake and restless at night. Some are no longer able to tell the difference between night and day, while others are simply not as active as they used to be and so need less sleep.
Problems with sleeping or late evening agitation are often a stage in dementia that eventually passes. Many people with dementia sleep more during the later stages of the illness.
Sleep problems are among the most difficult dementia symptoms for carers. Families and carers must be able to get adequate sleep themselves. Plan regular periods of rest and regular breaks for yourself, as well as for the person with dementia.
Medical causes of sleeping problems in dementia
Sleeping problems may be caused by physiological or medical causes including:
brain damage (caused by the dementia) that affects the ‘biological clock’ in the brain that directs our sleep patterns
illness such as angina, congestive heart failure, diabetes or ulcers
pain caused by conditions such as arthritis
urinary tract infections that cause a frequent need to urinate
leg crampsor ‘restless legs’, which can indicate a metabolic problem
depressionthat causes early morning wakening and an inability to get back to sleep
side effects of medication, such as antidepressants and diuretics
snoring and sleep apnoea
ageing that causes sleep patterns to change so that some people need more sleep and some need less.
Things you can try include:
Discuss with the doctor the possibility of stopping or changing diuretic medication (which makes a person urinate), because this may be contributing to the problem.
Arrange a medical check-up to identify and treat physical symptoms.
Treat pain with an analgesic (pain-relieving medication) at bedtime if the doctor agrees.
Discuss with the doctor whether sedatives may be contributing to the problem.
Ask the doctor whether an assessment for depression may be necessary.
Ask the doctor about possible side effects of medication.
In some situations, it may be necessary to consider discussing with the doctor the appropriateness of either using tranquillising medication or sleeping medication. Sleeping medication may be helpful in the short term to establish a better sleep cycle, but both types of medication can have negative effects, such as increased confusion.
Environmental causes of sleeping problems in dementia
The environment of the person with dementia can cause sleeping problems in a number of ways including:
The bedroom may be too hot or too cold.
Poor lighting may cause the person to become disoriented.
The person may not be able to find the bathroom.
Changes in the environment, such as moving to a new home or having to be hospitalised, can cause disorientation and confusion.
Things you can try include:
Keep the environment as consistent as possible.
Check whether the person is too hot or cold when they wake up, because dementia can affect the body’s internal thermostat.
Provide adequate lighting if shadows, glare or poor lighting are contributing to agitation and hallucinations.
Move the mirror in the bedroom if the person becomes confused when they do not recognise their own reflection or the reflection of others in the room.
Install night-lights that might help cut down on confusion at night and may help the person to find the bathroom.
Place a commode next to the bed if finding the bathroom is a problem.
Make sure the bed and bedroom are comfortable and familiar, because familiar objects may help to orient the person.
Avoid having daytime clothing in view at night, because this may make the person think it is time to get up.
Make sure that the person is getting enough exercise – try taking one or two walks each day.
Other causes of sleeping problems in dementia
Other causes of sleeping problems may include:
going to bed too early
sleeping too much during the day
overtiredness, causing tenseness and inability to fall asleep
not enough exercise, so the person does not feel tired
too much caffeine or alcohol
feeling hungry
agitation following an upsetting situation
disturbing dreams.
Managing sleeping problems with food and drink
Some suggestions include:
Cut down on caffeine (coffee, cola, tea, chocolate) during the day and cut them out altogether after 5 pm.
Cut down on alcohol and discuss the effects of alcohol and medication with the doctor.
If you think the person may be hungry at night, try a light snack just before bed or when they wake up during the night.
Herbal teas and warm milk may be helpful.
Managing sleeping problems through daily routine
Some suggestions include:
Try not to do any tasks in the late afternoon that may be upsetting to the person.
If the person refuses to go to bed, try offering alternatives such as sleeping on the sofa.
In some situations, it may be necessary to consider discussing the appropriateness of either using sedative medication or sleeping medication with the doctor. If the person wanders at night, consider allowing this, but check that the house is safe.
Try a back rub before bed or during a wakeful period.
Try a radio beside the bed that softly plays music.
Gently remind the person that it is the evening and time for sleep.
Hoarding in dementia
People with dementia may often appear driven to search for something that they believe is missing and to hoard things for safekeeping.
Some causes of hoarding behaviours include:
isolation – when a person with dementia is left alone or feels neglected, they may focus completely on themselves. The need to hoard is a common response
memories of the past – events in the present can trigger memories of the past, such as living with brothers and sisters who took their things, or living through the Depression or a war with a young family to feed
loss – people with dementia continually lose parts of their lives. Losing friends, family, a meaningful role in life, their income and a reliable memory can increase a person’s need to hoard
fear – a fear of being robbed is another common experience. The person may hide something precious, forget where it has been hidden and then blame someone for stealing it.
Managing hoarding
Things that you can do to help manage hoarding behaviour in dementia include:
Learn the person’s usual hiding places and check these first for missing items.
Provide a drawer full of odds and ends for the person to sort out, as this can satisfy the need to be busy.
Make sure the person can find their way about – an inability to recognise the environment may be adding to the problem of hoarding.
Repetitive behaviour in dementia
People with dementia may say or ask things repeatedly. They may also become very clinging and shadow the person caring for them, even following them to the toilet. These behaviours can be very upsetting and irritating for families and carers.
Managing repetitive behaviour
Things that you can do to help manage repetitive behaviour in dementia include:
If an explanation doesn’t help, distraction sometimes works. A walk, food or doing a favourite activity might help.
It may help to acknowledge the feeling expressed. For example, ‘What am I doing today?’ may mean that the person is feeling lost and uncertain, and a response to this feeling might help.
Do not remind the person that they have already asked the question.
Repetitive movements may be reduced by giving the person something else to do with their hands, such as a soft ball to squeeze or clothes to fold.
Wandering in dementia
Wandering is quite common among people with dementia and can be very worrying for those concerned for their safety and wellbeing. The person’s failing memory and declining ability to communicate may make it impossible for them to remember or explain the reason they wandered.
Develop an action plan for when a person with dementia wanders, such as noting the clothing they were wearing, and contacting neighbours and the police.
Reasons that a person with dementia might wander include:
changed environment
loss of memory
excess energy
searching for the past
expressing boredom
confusing night with day
continuing a long-held habit
agitation
discomfort or pain
believing they have a job to perform.
Managing wandering
Things that you can do to help manage wandering in dementia include:
Get a physical check-up for the person to help identify whether illness, pain or discomfort has triggered the wandering.
Discuss the side effects of medication with the doctor – try to avoid medication that may increase confusion, and cause drowsiness and possibly incontinence.
Consider the psychological causes of wandering to try to determine if the person is anxious, depressed or frightened.
Make sure that the person carries some form of identification that includes their current address, if travelling
Use identification cards available from Alzheimer’s Australia.
Sundowning in dementia
People with dementia may become more confused, restless or insecure late in the afternoon or early evening. This is known as sundowning and these behaviour changes can become worse after a move or a change in routine.
The person with dementia may become more demanding, restless, upset, suspicious, disoriented and even see, hear or believe things that aren’t real, especially at night. Attention span and concentration can become even more limited. Some people may become more impulsive, responding to their own ideas of reality, and this may place them at risk.
Visit the doctor for a check-up and a review of medication. There are a number of physical and environmental changes you can make to restrict stimulating activities to the morning and promote relaxation in the afternoon and evening.
When you are dealing with all kinds of behaviors, you will need a way to calm your own frustration. Sometimes, you need to walk away and take a few minutes to compose your own thoughts and settle down. Is what they are doing hazardous or frustrating and aggravating? Unless it is dangerous or hazardous, leave them alone.
Know your own warning signs of frustration:
Shortness of breath
Knot in the throat
Stomach cramps
Chest pains
Headache
Compulsive eating
Excessive alcohol consumption
Increased smoking
Lack of patience
Desire to strike out
If you don’t deal with your own frustrations, anger and resentment are not far behind.
We have seen the studies. We have experienced a decline in our own health all the while ignoring our own health needs. We know that we need to take care of ourselves so that we can take care of our loved ones. We know that caregivers can often wind up in worse physical shape than those they are caring for. Still, we do nothing for ourselves. Why?
September 7, 2022
We are stubborn people. We all believe that we can handle “this.” We must handle “this.” You may even hear and believe that “God doesn’t give you more than you can bear.” That is not a true statement. Go read it. 1 Cor. 10:13. God will not let you be tempted more than you can bear. He will provide a way of escape. God will give you the grace you need in every situation. His power helps us use the resources that we have and can get to handle whatever is in front of us.
Do we think that we have to suffer or put our own lives on hold to help or care for someone we love? You see, that is more of the “either/or” thinking and not the “both/and.” Get out of the “either/or” thinking mindset. Get into the “both/and” types of thinking. If you have only thought of the “either/or” possibilities, then you can learn to think of a “both/and” possibility. More on this later.
What attitudes and beliefs do you have that stand in your way?
Do you think you are being selfish if you put your needs first?
Is it frightening to think of your own needs? What is the fear about?
Do you have trouble asking for what you need? Do you feel inadequate if you ask for help?
Do you feel you have to prove that you are worthy of the care recipient’s affection? Do you do too much as a result?
Really think about the above questions. It may be time to take 30 minutes to think and talk to yourself. Writing it out helps you to get to the real issues/answers.
Here are some ways that your own mind will kick your ass.
I am responsible for my parent’s health.
If I don’t do it, no one will.
If I do it right, I will get the love, attention, and respect I deserve.
Our family always takes care of their own.
I promised my father I would always take care of my mother.
Your own negative self-talk will get you into trouble. Just because you think it, does not make it true or right. Circumstances may have changed and you can no longer keep your promises. Don’t hold yourself to impossible standards made in the heat of concern/passion.
Our behavior is based on our own thoughts, beliefs, attitudes, and misconceptions. Remember, your feelings can and will lie to you. You may believe something that is simply not true. Half-truths are what make up great lies. You do get to choose what you will or will not do. You do not get to choose what you can and cannot control. That is not the way life works. Yes, it sometimes is awful, frustrating, and maddening. What can you truly control? Your attitude. Your own actions. Your self-talk. Your gratitude. Your own mental and physical fitness. Your eating habits. Your sleep. Your boundaries. What you prioritize?
Things you do not have control over:
You can’t control other people (what they do or what they say).
You can’t control how other people see you.
You can’t control what happens to other people.
You can’t control your thoughts or feelings, they just are. You don’t have to act on them, though.
You can’t control the outcome.
You can’t control other people’s happiness.
You can’t control the past.
You can’t control the future.
You can’t control that change is inevitable.
Stop wasting your energy and time on things you cannot control. Focus on what you can control and actually make a difference.
Will you reduce your personal stress?
The problem isn’t always the problem. The problem is how we perceive the problem. The meanings we attach to the problem.
The following information is from Family Caregiver Alliance
Your level of stress is influenced by many factors, including the following:
Whether your caregiving is voluntary. If you feel you had no choice in taking on the responsibilities, the chances are greater that you will experience strain, distress, and resentment.
Your relationship with the care recipient. Sometimes people care for another with the hope of healing a relationship. If healing does not occur, you may feel regret and discouragement.
Your coping abilities. How you coped with stress in the past predicts how you will cope now. Identify your current coping strengths so that you can build on them.
Your caregiving situation. Some caregiving situations are more stressful than others. For example, caring for a person with dementia is often more stressful than caring for someone with a physical limitation.
Whether or not support is available.
Steps to Managing Stress
Recognize warning signs early. These might include irritability, sleep problems, and forgetfulness. Know your own warning signs, and act to make changes. Don’t wait until you are overwhelmed.
Identify sources of stress. Ask yourself, “What is causing stress for me?” Sources of stress might be that you have too much to do, family disagreements, feelings of inadequacy, or the inability to say no.
Identify what you can and cannot change. Remember, we can only change ourselves; we cannot change another person. When you try to change things over which you have no control, you will only increase your sense of frustration. Ask yourself, “What do I have some control over? What can I change?” Even a small change can make a big difference. The challenge we face as caregivers is well expressed in the following words modified from the original Serenity Prayer (attributed to American theologian Reinhold Niebuhr):
“God grant me the serenity to accept the things I cannot change, Courage to change the things I can, and (the) wisdom to know the difference.”
Take action. Taking some action to reduce stress gives us back a sense of control. Stress reducers can be simple activities like walking and other forms of exercise, gardening, meditation, or having coffee with a friend. Identify some stress reducers that work for you.
Pretty good information, huh?
Have you considered the real reasons that you do not take appropriate care of yourself?
You haven’t made your health a priority.
You don’t feel you have enough time to do all you “need” to do.
You feel guilty taking some time away from your loved one.
You don’t have the energy.
You have reached the burnout stage.
You won’t accept things as they are, right now.
You won’t put yourself in the mix of things to handle.
10 Health Problems Caused by Chronic Stress
Weakening of the immune system, which increases vulnerability to colds and other infections
Mental health disorders (e.g., anxiety, panic attacks, depression, mood swings)
Cardiovascular problems (e.g., high blood pressure, elevated heart rate, high cholesterol levels, increased risk of heart attack and stroke)
Respiratory problems (e.g., shortness of breath, rapid breathing, exacerbation of existing lung diseases like asthma and chronic obstructive pulmonary disease)
Worsening of skin conditions (e.g., eczema, psoriasis, acne, rosacea, hives)
Which of these have you noticed in your own life? As you can see, you have to decide if your health is worth taking care of so that you feel better and are able to be the caregiver your loved one needs. Prevention is much easier than fixing a problem after it has happened. You do deserve to be happy and healthy. You do deserve to provide better care and get your life back. My services can help you achieve your goals.
