Being a caregiver is more difficult than one can imagine until it becomes the focus of your life. For many, it entails a commit of years and no matter how hard you try you are unable to alter the outcome.
During my years as a caregiver for my father-in-law, Rodger. I cried a lot. Sometimes I got angry, often I was weighed down with guilt. Many times I turned to prayer. Did I receive instant answers or did a miracle occur? No. But there were occasions when help appeared when I needed it most. What it took me along time to discover is that it’s very important to be specific in what you pray for. Many people pray for strength when what they really need is assistance. Others may pray for patience when they really need an answer now.
Beth doesn’t realize she is already as string as she will ever need to be and asking for added strength will only add to her burden.
I am proud to share the exciting news that I am now a co-host, along with my husband, Mike, of a podcast named after my father-in-law, Rodger.
RodgerThat.show is the podcast dedicated to guiding you through the heavy haze of dementia. A new episode goes live each week on Tuesday.
Here is link to an episode where we respond to some questions from caregivers like you who are seeking help on the difficult days that occur for all caregivers. Managing Behaviors and Emotions with Bobbi and Mike
Your questions and comments are always welcome.
Bobbi Carducci, Certified Caregiving Consultant, Certified Caregiving Educator, International Speaker on Caregiving Issues. http://www.bobbicarducci.com
It can. It doesn’t always. This ambiguous response is true of many questions regarding what happens when someone has Alzheimer’s disease or one of the many other forms of dementia. What is true for one person is not true for many others.
Some factors that can have an effect on whether or not someone experiences cognitive decline after general anesthetic are:
Age – The older we are, the more vulnerable we are to side effects of anesthesia. Our brain, like the rest of us does not respond in the same way it once did.
Medical Conditions and Medications – The more health issues one has and the more medication one requires the greater the chances of cognitive decline with the added stress of surgery.
Loss of Blood – Blood loss during surgery can reduce oxygen flow to the brain resulting in cognitive impairment.
Type of Anesthesia Needed and What Procedure has to be Done – Depending on the circumstances, the surgeon may need to use heavy sedation over a relatively long period of time increasing the chance of a negative reaction. For less extensive procedures, he or she may opt for a spinal block and twilight sleep. Doing this could lessen the risk of cognitive decline.
Pre-existing Dementia – Dementia is a devastating brain disease and any procedure that causes increased stress on it could result in changes in function.
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It is important to note that often the cognitive changes seen immediately after surgery and anesthesia are temporary.For some patients there can be a partial return to pre-surgery state with more minor losses remaining.
It is also important to speak openly about your concerns and to work with the physician to formulate the best plan for the needs of the person requiring surgery. Despite the risks, the procedure may have to go forward in order to save the person’s life. And remember, the surgeon and medical staff want the best possible outcome as much as you do, and will do their best for their patient.
We all know that eventually the day will come when it will no longer be safe to drive however, the word eventually means we don’t have to face it for a long time. Unfortunately for some, it comes sooner than we think and under circumstances we didn’t consider when first taking the wheel and heading off down the road.
When someone has dementia or has had a stroke or traumatic brain injury, that day can arrive sooner than cognitive impairment can process the change or how much danger they can be to themselves and others. This often leads to denial, anger, and a lot of lashing out at the person standing in their way.
When that day comes for your loved one:
Try to include him in the decision process. Have someone he trusts with sit with him and go over the dangers in continuing to drive. Deciding on his own is better for him than having his licensed revoked due to an accident. Even if he was not at fault he could be sued resulting in not only losing his license but serious financial loss as well.
It’s important to understand that this is an issue that must be addressed. Check with your local and state police for information on the law in your area. In many places, if you are aware the person in your care has cognitive impairment and you know they are driving, it could put you and your assets at risk.
Here are somesuggestions on what to do when faced with this issue:
Let him know you are on his side. You are not taking this from him. “Dad. I know this is important to you and always were a good driver. Let’s see what we can do about this.” Then call his doctor.
Have the doctor speak with Dad. Some people are conditioned to follow a doctor’s advice.
Once confirmed by the doctor that he should not be driving and he still insists on getting behind the wheel, arrange for him to “lose” his license. (Hide it.)
Again. Let him know you are on his side. “I’ll call the DMV and make an appointment so you can get a new one.” Inform the person you speak with that he has dementia. Arrange for him to have a driving test. If he resists remind him that this is a chance to show them he can drive. When he fails the test, let the DMV revoke his license. Be supportive when he gets upset. “I know this is hard and you are angry. I would be angry too.” Acknowledge his feelings and his right to express them.
If he still insists on driving, keep all keys where he can’t get them. If possible move the car somewhere he can’t see it.
A driver’s license represents independence and freedom. We drive out of necessity and we drive for fun. No longer being able to get in the car and go can require a mourning period. Validate his feelings of loss. If his anger spirals out of control go into another room and lock the door until he calms down. If necessary, call law enforcement to assist you.
Note: The regular contact form will not post. To reach me send an email to: bcarducci@Comcast.net
Mom refuses to change her clothes? It’s been four days!
Five reasons why this often happens and what may help change her mind:
She thinks she just put them on. Days may run together for her and sometimes her mind has taken her back in time. Try telling her the day of the week and suggesting it’s time to change her clothes. “Goodmorning, Mom. It’s Monday, clean clothes day.” If she resists, don’t insist. Give her time to think about it. She may surprise you later by changing her clothes on her own. It’s become her idea.What is four days to you could be only moments ago to her.
She doesn’t understand why you are trying to take her clothes from her. She is warm and comfortable as she is. She may have body issues, (don’t we all) and not want you to see her unclothed. Set out some clean clothes and walk away. Curiosity may result in her checking them out and trying them on. Again, don’t insist. Let it become her choice.
She doesn’t remember how to take them off. Buttons and snaps are hard for her. She can’t figure out how to get her arm through a sleeve or the leg of a pair of pants. Dementia friendly clothing is available for women and men from sites like this and others: https://www.silverts.com
She can’t tell that they are dirty. Dementia affects vision and her clothes look fine to her. People with dementia oftenhave very limited peripheral vision. When she looks down, it’s like looking through a pair of binoculars. She can’t see that her shirt has multiple stains. Gently tell her that there is a spill that may stain and suggest she put the item in the laundry. Now she is doing something she has done many times, putting clothes in the laundry, and you are not making her change her clothes.
She doesn’t recognize what a shirt, a pair of pants, or skirt are.Muted colors are sometimes hard for someone with dementia to see. Try laying out clothing in bright colors. Reds, deep blues, yellows, greens, and purples for instance. If her selections clash, who cares? They are clean and you have avoided some stress. Things of different shapes and sizes that move on hangers when she tries to touch them frighten her. Too many choices confuse her.
Note: These suggestions may work once or twice and then never again. Some may not work at all for you. However, giving them a try may help and can’t hurt.
If you have a suggestion for other caregivers, please post it here. Caregivers get it in a way no one else can.
Bobbi Carducci is a Certified Caregiving Consultant, CCC and a Certified Caregiving Educator, CCE. To schedule a FREE 30 minute consultation or for details on how to schedule a presentation, send and email to info@bobbicarducci.com
Often the behavior of someone with dementia is so changeable and unpredictable it’s almost impossible to figure out what is going on, leaving the caregiver confused and frustrated. Why is your spouse confused with you and so alert when someone comes to visit? Why does your mother, who is usually calm and agreeable, suddenly become angry and aggressive? “Why do you do that?” you may ask.
Alzheimer’s and the other forms of dementia are devastating brain diseases. Connections affecting behavior and memory work intermittently in the mild to moderate stage resulting in good days where one might question they even have the disease to bad days when their world and yours seem to spin out of control with no warning.
Their brain is sending them messages as real to them as your thoughts are to you. The person with dementia is terrified. The caregiver is at her wits end. The situation can escalate and sometimes may even become dangerous. What just happened, you may wonder. Things were fine a moment ago.
Take a few deep breaths to calm yourself. People with dementia may not understand your words but they do sense your emotions. If you are tense their tension will rise creating a worsening situation for both of you.
Try to determine what their behavior is telling you. Behavior is communication. Body language can speak volumes when words fail. Here are four examples of common dementia behaviors and how your response can get you from frustration to connection:
One moment Mom is happily sharing breakfast with you and the next she is terrified of the stranger sitting across from her. No matter how hard you try, you cannot convince her who you are and that she lives with you now.
Mom not recognizing you tells you that her brain has taken her back in time. Ask her how old she is. If she is in her thirties and you are still a child, go there with her. Smile, tell her your name and ask her to tell you about her child. Share some of your memories from that time. You may end up having some precious moments with her.
Your father, who celebrated his retirement five years ago by playing golf as often as possible, is now demanding you give him the keys to his car so he can get to work on time. His job was important to him and was a way to show his love for his family. Tell him it’s the weekend or his day off. Ask him what he has planned for the following week and listen to his ideas. Let him know how much you appreciate all he does for his family.
Your loved one keeps trying to get out of the house insisting she wants to go home even though she is home and you moved in to take care of her. When someone with dementia wants to go home you may think she is referring to the last place she lived. However, it could be her childhood home or the first apartment she had as a newlywed. It could be that she doesn’t feel safe in the moment and needs the feeling of comfort that being home brings to everyone. Tell her that she will be home soon and ask her to tell you about her favorite room. You may be surprised at where she is. Wherever she thinks of as home, go there with her. If you have any pictures from that time or place show them to her and spend some time listening to her stories. You may learn some surprising things about her and her life before you came along.
Every evening like clockwork, your husband begins to pace the floor and mumble incoherently, becoming more and more upset as he tries to make you understand what he’s trying to say.Trying to understand someone whose words are incomprehensible is extremely hard. You would respond if only you knew what he was trying to tell you. The harder you both try to communicate the more frustrated you both become. You won’t suddenly become fluent in his language. In this case your words are not as important as your tone and body language. If he is agitated you need to create distance between you and speak quietly, assuring him you understand. You may not, but that’s okay. The feeling of being understood is what’s important here. Smile and nod in agreement as he begins to relax. If he sits, you sit. Mirroring his movements is communicating in a way he can see. In time you may even begin to understand one another better.
There is never an easy answer, or one that works every time for everyone. However, going into their world works better than trying to get them to understand ours.
Bobbi Carducci was a caregiver for her father-in-law with dementia for seven years. She is a caregiver support group leader, blogger, author of the book, Confessions of an Imperfect Caregiver, Caregiver You Are Not Alone, and national speaker on caregiver issues. www.bobbicarducci.comwww.theimperfectcaregiver.com Twitter:@BobbiCarducci2 Facebook: https://bit.ly/2FXw3JP
When it’s one of those many very bad days and you the person you are caring for is pushing every button and grating on every nerve it’s natural to feel resentful and truly dislike her or him.
It’s okay to feel that way. Most of do more quite often thorough this life changing time. However, anger and resentment take a toll on us mentally and physically. It’s exhausting to deal with all that emotion on top of everything else you do.
What is a caregiver to do on days like that?
Walk away from the person in your care.
Go to a quiet place. Go to the bathroom if that’s the only place you can be alone.
Take a deep breath, let it out slowly. Repeat, Repeat. Repeat. Keep repeating until you feel calm.
Think of one of the very best days you ever had with your caree. Picture it in your mind. When you are ready, perhaps when you being to smile, or cry, or simply wish for that day back, go get a cup of coffee or a glass of water.
When you are ready – share that memory with your love one. Hold his or her hand if they are open to it. If they are not in a mood to share just then, it’s okay. You took a bit of time to take care of you. And maybe you have planted a seed in your caree’s memory that will take root later and give them a precious moment as well.
As if sundowning weren’t a challenge for those with dementia and their caregivers we add fireworks to the mix on July 4th each year. A person who once loved fireworks may respond differently now. For someone with dementia, the loud pops and explosions can trigger memories of wartime experiences causing a return or worsening of PTSD (Post Traumatic Stress Disorder). Even someone who never went to war can be deeply affected by these annual displays. The flashing lights and changing colors in the sky can trigger fear leading to aggressive behavior that can be dangerous for the caregiver and their family member. Between the community events and backyard enthusiasts, the noise and confusion can often go on for hours. While some are calling for the ban of fireworks all together others are reluctant to do away with the long held tradition that they grew up with. It’s not an issue that will likely be resolved soon. However there is some good news. Many communities are becoming more aware of the impact fireworks have on those with dementia and are taking steps to minimize the impact by using quiet fireworks that focus on colors and effects rather than sound. It may not be a complete fix but it’s a step in the right direction for many.
If that is not the case in your area, here are a few suggestions that may help make things less stressful for you and your family.
Talk to the person in your care about the holiday and what it means to him or her. Listen to their stories of picnics past and how they showed their pride in their country.
Encourage them to talk about fireworks. Were they exciting and fun or too loud and scary?
If you live near a place where you see and hear fireworks from your home, you should prepare them for what will happen. They may not remember later but you never know what will help on day like this and it’s worth a try.
Early in the day may be a good time to show them a video of fireworks. There are a number links of the displays available for viewing on social media. Turn the sound off before showing it to the person in your care. Explain that they may see these lights in the sky later that night and you will sit with them until it’s over.
If even the silent display is upsetting, close the blinds and drapes in their room before sunset to block out the flashing lights. Play music he or she likes using earbuds or head phones if possible to mask the noise. If these devices are not available or practical in your situation, play the music anyway and sing or dance along with it to distract them, they may even join you.
Behavior is communication and their actions always include clues as to where they are and how they feel. It is when we enter their world rather than insisting they live in our reality that true understanding comes to us, the caregivers.
Bobbi Carducci was a caregiver for her father-in-law with dementia for seven years. She is a caregiver support group leader, blogger, author of the book, Confessions of an Imperfect Caregiver, and national speaker on caregiver issues. www.bobbicarducci.comwww.theimperfectcaregiver.com Twitter:@BobbiCarducci2 Facebook: https://bit.ly/2FXw3JP
When it comes to care giving, sometimes love doesn’t enter the picture at all. People with dementia behave in ways that try us to our very limits. Waking each morning wondering what new hell this day will bring causes anxiety, resentment, grief, and anger.
You may have loved your parent, your spouse, your sibling, or your grandparent for many years, but when dementia takes over and the person you knew is gone, replaced by a stranger trying to escape from you, refusing to bathe, and accusing you of all kinds of terrible things, love can be forgotten. Sometimes it’s gone for only a moment or a day or two. Sometimes it dies leaving duty in its place and we grieve while they still live. Sometimes we pray for the end to come and are overwhelmed with guilt for even thinking such a thing.
However, it’s not death we wish for, we don’t really want that. We wish for the pain to end. Theirs and ours.
It is because we care that we started this journey. It is because we care we carry on when we think it’s no longer possible, even when we wake up each morning wondering what new hell this day will bring. For deep inside they remain who they once were and so do we. We rise and enter their world ready to keep them safe another day. And that’s what love’s got to do with it.
When we hold our infants in our arms we are filled with awe and hope for the future. We envision a life of promises fulfilled. We never picture them feeding us, holding our hand to keep us from falling, or changing our underthings. I couldn’t type the word diapers. The thought of losing my dignity to such a degree is truly fearsome. In my mind I hear the words, “It’s enough to scare the pants off me.” The irony makes me shudder and chuckle at the same time.
The caregiver and the cared for locked in a fearsome intimacy. I don’t know where the quote above came from. If I did I would give credit here. What I do know is those five simple words speak a devastating truth.
When it’s one of those many very bad days and you the person you are caring for is pushing every button and grating on every nerve it’s natural to feel resentful and truly dislike her or him.
The Imperfect Caregiver 
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