Chapter Five: Managing Difficult Behaviors
What follows is Chapter Five of Meet Me Where I Am: An Alzheimer’s Care Guide, by Mary Ann Drummond. Drummond, an Alzheimer’s care expert and licensed nurse, is Vice President of Operations at Carillon Assisted Living.
Each chapter of Drummond’s book will be released in serialized installments. Chapter Six, Caring for the Caregiver, will be released April 16.
Chapter 5:
Managing Difficult Behaviors
“Kind words can be short and easy to speak, but their echoes are truly endless.”
-Mother Teresa
When we were children, we were often told, “Sticks and stones can break your bones but words can never hurt you.” Yeah…right! I didn’t believe it then, and I still don’t. The damage caused by an unkind word can be irreversible. Just think back to those awkward, adolescent days when someone called you a name or made fun of you in some way in front of others. Were you overweight? Tall and skinny? Maybe you wore glasses or had red hair with freckles, or some other feature that made you stand out from the crowd as “different.” Human beings begin as children to cast out or socially isolate that which we don’t understand. For some of us, the memories remain strong and we can still feel the blood rise in our cheeks when we think about those days.
Understanding the impact words have on our overall well-being is even more important for our loved ones who suffer from Alzheimer’s disease. Have you ever witnessed a time when someone was short or said something less than kind to someone with Alzheimer’s when they did something that was deemed inappropriate? I cringe when I hear a family member say things such as, “I wish you would pay attention!” Even worse can be, “You’re just not trying hard enough!” Especially when you understand they are trying with all their might but are just not physically capable of processing the multiple messages becoming tangled in their brain.
Experiencing negative emotions, over-stimulating situations or other uncomfortable interactions may generate atypical or inappropriate responses in someone who is cognitively impaired. Clinicians often label such responses as “behaviors.” For lack of a better word, we too will use this term, though I prefer to think of the manifestations as a response to the chaos created by the disease rather than a behavior.
When we are afraid of failure or lack confidence, we are cautious to participate. When we feel someone may have stolen from us, keeping an item we care about away from us, we can be aggressive to have our personal property returned. When we feel that we have a responsibility to complete a task and someone is keeping us from that, such as caring for a child, we are passionate to overcome the obstacles and fulfill our duties. These desires and characteristics do not cease with the onset of Alzheimer’s disease.
In the early stages, there is a realization that something is wrong. However, with reasoning and memory impaired there is often a degree of paranoia and anger within the individual as they try to process what is happening to them. As the disease progresses, they reach what I call the “point of grace” wherein they are no longer aware that they have the disease and the paranoia related behaviors are often replaced with an increased focus on the past and a drive to fulfill past responsibilities. This can cause many manifestations such as wandering while seeking “home,” plundering while searching for some perceived lost belonging, anxiety due to feelings of failure, and other emotional responses to an environment that is confusing and bewildering.
These manifestations are a response created by an impaired cognitive status that distorts one’s perception of the environment. It is good to be aware of the potential behaviors and know how and when to intervene to prevent escalation and the possibility of a more volatile situation. Caregivers are cautioned to remember that these behaviors are symptoms of the disease and not a conscious effort to be disruptive.
The behaviors can be challenging to deal with, particularly when the behaviors are directed toward the caregiver. These behaviors are most common in the early to middle stages of the disease and can sometimes escalate to episodes of violence. Knowing how to recognize the onset of abnormal behavior and how to provide therapeutic interventions for specific behaviors can help decrease the severity of the situation. The majority of successful interventions revolve around three basic principles:
1. “Meet Me Where I Am”
Much focus has been placed on understanding what this concept means. To simplify, you must evaluate as much as possible the patient’s perceptions including where they think they are, who they think you are, and what they believe the reality of the moment to be. Regardless of how far off base the perceptions are, establish a sense of trust by acknowledging their reality and use their perceptions as a starting point for communication. By doing so, you will find it is easier to gain their attention and therefore increase the opportunity for them to successfully understand what you are trying to say.
2. Redirect and Reminisce
In the care of a patient with Alzheimer’s disease, the best way to find rest and relaxation is to know how to redirect and reminisce. Redirection involves the presentation of a bold and obvious distraction to draw attention away from current thoughts and/or activities, followed by transition to a more successful task or topic, thus resetting the short term memory. What distracts us is unique to each individual and can vary from moment to moment, so be prepared to try multiple things. A favorite song, a picture of a relative who is still familiar, a brightly colored object, a musical instrument, or even a tempting slice of homemade cake are all examples of distractions that may be used successfully. Once the distraction has proven successful, chances of reverting to previous inappropriate thoughts will be reduced by adding reminiscing therapy. Enjoy a stroll through memory lane together, finding a topic that generates interest and let them tell you more about it, even if you’ve heard the story a thousand times before.
3. Provide Opportunities for Success
Alzheimer’s disease is a thief that slowly robs us of our ability to lead a fruitful and productive life. As the disease progresses, it becomes more and more challenging to feel successful as we are constantly presented with the “failure” of what we can no longer do. By providing increased opportunities for success, the potential for frustration and agitation is decreased while overall self esteem is increased.
A farmer who worked in the fields for many years before falling victim to Alzheimer’s disease use to wake up each morning at the crack of dawn to ready the tractor and start his work day. His wife was frustrated and at her wits end as no matter how many times she told him they no longer had a farm, tractor, or field to plow, he didn’t believe her. He would become belligerent, argumentative and aggressive through the morning while he remained fixated on what he perceived as an unmet responsibility and blamed his wife for keeping him from it. His wife became better educated and began to use the concepts of “meet me where I am” which was met with wonderful success for both she and her husband. When he woke up and began telling her it was time go plow the lower forty, she would graciously smile and compliment him on how well he managed their farm. They would then enjoy breakfast and a cup of coffee as she listened to him plan the day and talk about what needed planting, what he thought the price of grain would be that year and what they would have to do if the rain didn’t fall soon. She knew that when he put his cap on that meant it was time for action.
“Hold on a minute and I’ll walk out with you!”
She would walk up to him, place a kiss on his cheek and take him by the hand while escorting him toward the door. She would always stop on the way at the bottom of the stairs where they had placed many photographs and portraits of their life together throughout the years.
“Would you look at that? It’s a picture of our wedding day! You were the most handsome man I’d ever known! And there’s a picture of your mother. I think Jenny looks a lot like her when she was younger, don’t you?”
For a long time, she found the simple diversion of stopping at the staircase to reminisce over the family photo wall was diversion enough to help him forget his fixation on needing to plow the fields. Once she had successfully re-set his focus, she would ask him to help her do some small task that he was still able to do successfully, such as helping to set the table. On occasion, he would return to the previous thoughts throughout the day and again attempt to go to work. She would say things such as, “But you already did it and now you get to rest” or “It’s too hot today. We can do it tomorrow.” It worked beautifully.
While there are many unique behaviors symptomatic of the disease, such as a farmer who wants to plow a field that no longer exists, there are a few specific behaviors that occur in a high number of Alzheimer’s patients. The following provides information related to common scenarios you may encounter as well as recommendations on how to best manage when these behaviors are present:
Wandering/Exit Seeking
This type of behavior usually manifests when an individual’s perception of where they are at physically becomes distorted. Due to the confusion of familiarity to their surroundings, they will begin to wander around as though looking for something or may even try to leave where they are to return to some other place that remains vivid in their memory.
Often the place they are seeking no longer exists. You may hear them say, “I want to go home.” A natural response is often, “You are home.” While this sounds logical, it is highly possible the home they seek is the place they lived many years ago. You may find them going from room to room in the house, sorting through every drawer and closet as though looking for some unknown object. When you ask them what they are doing, there may be no reply at all.
Wandering is one of the most dangerous of all the behavioral manifestations common with Alzheimer’s disease, due to the fact the wandering and searching can often lead to leaving the safety and security of their current environment. Unfortunately, there are many sad stories wherein someone suffered serious and sometimes fatal injuries due to exposure to the elements when lost in the woods after leaving their home in the middle of the night, or wandering onto a busy highway.
When wandering behavior is first identified, it is imperative that the caregiver initiate measures to ensure safety. If the option of providing supervision of care 24 hours 7 days a week is not available, you should consider placing your loved one in a care facility that specializes in the needs of patients with Alzheimer’s disease. While the manifestation of wandering or exit seeking behavior may be sporadic, one cannot predict when an episode will again occur and you should never rationalize to yourself that it was just a onetime event as it rarely ever is.
Even when the patient is in a safe and secure environment with constant supervision that prevents them from leaving, it is not good to allow them to stay in a “wandering” state of mind. Failure to find the place they are looking for or the inability to complete the task they seek will cause increased anxiety and potential escalation into other behaviors.
So how do you meet someone where they are at when they are trying to get home to care for the children who are now grown and on their own? You can try to tell them the realities of the day, but little will convince a mother who knows in her heart her baby needs her that it isn’t true. If I’m telling you that I have to leave to get home and meet my children when they come home from school, don’t look at me and say, “But Momma, I’m your child. I’m all grown up with children of my own. I’m not in school anymore.” Instead, ‘meet me where I am’ and say, “O.K. I’ll take you home. We can go together.” Take me by the arm as we begin to walk and ask, “So tell me about your children. How many do you have?” As I start to tell you, ask anything you can to get me talking about something that leads me away from thoughts of my children. The following is an example of an actual conversation I had recently in a similar scenario.
A resident was determined to “go home and see about my children.” She was using her walker to beat against the door of the secured unit where she was residing and lashing out at anyone who tried to approach her and lead her away from the door. Cautiously, I approached her, making sure to make eye contact before I spoke. “You need to go home to see about your children?” She responded, “Yes! And they won’t let me leave! They are going to be coming home soon and they will be hungry! Help me out of here!”
“Well, I can take you there. Tell me about your children?”
“You can take me? You can take me now?”
“Yes. I’ll be glad to. How many children do you have?” She was unable to tell me how many children and I could tell that asking her about her children was creating further anxiety. Since she had mentioned the children would be hungry, I “met her where she was” and focused on that thought.
“You need to cook something for your children?” We were walking down the hall slowly, with me gently guiding her and my arm in hers.
“Yes. They will be hungry. You will take me there, won’t you?”
“I will take you there. Tell me what you like to cook…I have heard that you are an excellent cook!”
“Well I hold my own. My family especially likes my chicken and dumplings. They will be home soon…we need to hurry!” This was my open door. She had mentioned a dish that I could tell she was proud of. If I could redirect her thoughts away from the children to her culinary expertise, it would be possible to bring her to a better place and cause the wandering behavior to cease for now.
“I was never very good at cooking dumplings. How do you cook yours? Would you be willing to teach me?”
“Oh, my! You mean to tell me your Momma didn’t teach you how to cook dumplings? It’s as easy as pie!”
By this time we had walked our way into the kitchen area. I pulled out some flour from the cupboard and asked if she would show me what to do. At the same time, I placed a brightly colored, old fashioned apron around her, telling her I didn’t want to ruin her beautiful dress. The apron was actually an activity aid, known as a fidget apron. They have zippers, pockets with hidden treasures, and other items for distraction sewn onto them. It worked. I had an excellent cooking lesson and when she wasn’t using her hands to knead the flower and water together, she applied her stress toward a zipper on the skirt of her apron, continuously moving it up and down.
It’s not always that easy. Sometimes you have to keep experimenting until you find the right subject or object to distract them. Be sure to look for the “cues” in what they say to you. When you find that one nugget they respond to, continue to work it until they are no longer exhibiting thoughts related to wandering behavior. Also, remember to avoid keeping the focus too long on the thought of what seems to be driving the behavior. Once you have assured them you will help them to the destination they are seeking, you can usually gain their trust and cooperation as they have already failed to get there on their own. Now you have an open window to introduce something new; redirect and reminisce to a better and safer place and time.
Paranoia
We discussed previously that paranoia is a common behavior that is especially present in the early to middle stages. Depending on how the paranoia manifests itself, it can be particularly difficult to handle. This is the only behavior where I have found “meeting me where I am” can be a challenge in the literal sense. When we believe someone has lied to us, stolen something from us or worse, they are out to do us physical harm, we become defensive and protective. “Meet me where I am” suggests we enter into their reality, and if the reality is not appropriate, lead them to a better place. When someone accuses us of doing something mean or dishonest, our natural inclination is to deny the accusation and attempt to argue our point to prove we are not guilty, yet we know arguing is never a good solution.
When dealing with paranoia, we can’t gain their trust by agreeing with them that their delusion is real, as that would only make us look more like the bad guy. We can’t argue with them to convince them that we did not do what we have been accused of. So what can we do? It really depends on the situation, but the basic concepts are the same in that the primary goal is assurance that the object they are focused on is safe. Then we should proceed with distraction techniques to override the negative short term memory perceptions.
Once, when entering an Alzheimer’s care unit, a resident came walking toward me, smiling and looking at me as though she knew me. This is a scenario I have often experienced and rather enjoy as it usually results in a very pleasant interaction for both myself and the patient. I was completely prepared to be whoever she thought I was (sister, daughter, friend) and was anticipating the warm welcome and hug I typically receive in such instances. With all I have learned and know about the care of patients with Alzheimer’s I was NOT prepared for what happened next! When we were within arm’s length of each other, what I received was far from a hug! She began shaking her finger in my face and yelled:
“You hussy! I know who you are! You’re that tramp that’s been sleeping with my husband!”
I certainly did NOT say, “Why, yes I am” and try to enter her reality!
My presence caused great angst and emotional pain for this person who thought I was the “other woman” coming to take her husband away. There was nothing I could do at that moment but turn around and remove my presence. Turning around to make a quick exit, I knew that in addition to removing the negative stimulus, someone needed to redirect her attention and make sure she was left in a better frame of mind. Otherwise, there would be a high risk that her agitation would grow and lead to a more volatile emotional state. I then called to speak to the staff present about what had just occurred. The staff member responded appropriately by bringing out a family album that the resident’s daughter had left with us, filled with old pictures that she still identified with. Since the staff member knew the story behind many of the pictures, she was able to share special memories and restore a feeling of well being. Soon the resident completely forgot about the “hussy” and was engaged in a joyful interaction, talking about her precious memories from long ago.
Paranoia can surface in many ways. Loved ones are accused of stealing jewelry, money and even of taking homes away. I knew someone who was convinced her daughter had stolen a treasured broche that had once belonged to her mother. She would see a piece of jewelry on someone and it would trigger her fixation on the broche and her belief that her daughter had stolen it from her. Though she was advanced enough in her disease process that she could not remember when or if she had eaten, she could still describe the broche in great detail, including the color of the stones and the inscription on the back. Her poor, frustrated daughter was at her wits end. Nearly every time she visited, her mother would eventually remember her feelings of loss and begin accusing her of stealing the broche, begging her to return it. The daughter would respond in earnest, hoping to convince her mother that she was not a thief.
“Mother, I didn’t steal your broche! I’ve told you over and over, I’ve never even seen it before!”
“Well you were the last one that had it! I know you did and I know that you’ve got it!”
The conversation would go downhill and eventually end in an argument with both parties upset. After spending some time with the daughter, I was able to convince her to try a different approach. It wasn’t an easy concept for the daughter to grasp and she shared that she felt like it was lying to her mother to do what I had asked her to do. I explained to her that the approach necessary to help her mother cope with the fixation on her jewelry was not a lie, but rather a therapeutic intervention that would help her mother. The next time her mother accused her of stealing from her, the daughter took my advice:
“Why did you take my broche? I know you have it! I wish you would give it back to me!”
“Mother, your broche is safe. I put it in a safe deposit box because I know how special it is to you. You say that Grandmother gave it to you?”
“Yes she did! She gave it to me on my 16th birthday. It belonged to her mother who gave it to her on her 16th birthday. And I want to know why you took it!”
“I put it in the family’s safe deposit box to make sure it stays safe. Grandmother had the most beautiful flowers. Do you remember her rose garden?”
“It was my grandmother’s and she gave it to my mother. It’s the most beautiful piece of jewelry I have ever seen.”
“I know Momma, that’s why I put it somewhere to keep it safe and later we can go check the box and make sure it’s there. Do you remember the white rose that one day started having red streaks in it? We were all amazed because it happened the day after Granddad died. You kept that rose and dried the petals, didn’t you?”
“Yes I did. We all thought it was a miracle. Mother said it was Dad’s way of telling her goodbye. I have some of the petals in my bible if you want to see them.” The conversation between the two continued and eventually her mother was telling her the funniest story about the time she fell off a horse and broke her arm.
The reason the outcome was different is that her daughter stopped arguing with the paranoia, assured her mother the object she was focused on was “safe” then used redirection to help her mother focus on a more positive memory. Each time her mother went back to the paranoia, she continued to assure her while offering a distraction toward an item she knew was special to her mother. This is the best way to deal with the behaviors associated with paranoia.
Paranoia can also be brought on by fear. When you were a child, was there anything that caused you to be afraid? Did monsters ever hide under your bed? For me it was the sound of thunder. No matter how many times my mother told me thunder couldn’t hurt me, I would find myself hunkered down somewhere with my hands over my ears, praying the storm would pass. My mother was a smart woman and found how to turn a character flaw into the thunder antidote. She saved it for the stormy days. Whenever the really bad storms came, Mom would capitalize on the fact that I was very competitive and bring out the Yahtzee game. After a while of this pattern occurring, I soon began to look forward to the thunderstorms and eventually lost my fear all together.
Just as it is difficult to convince a child there are no monsters under the bed when they are certain one exists, it can be even more difficult to convince someone with Alzheimer’s that no one is trying to take their money away when they are certain that they are. Your best success will be found when you refrain from engaging in a battle of realities and instead, redirect to activities that are enjoyable.
Shadowing
Growing up in rural Georgia, there were many old wives tales that we were made to obey. Don’t sweep after dark…it brings bad luck. Don’t wash your hair when you have a cold…you’ll catch pneumonia. Then there was my personal favorite: Don’t walk in someone’s footsteps…you’ll give them a headache. I confess, I LOVED to go back and walk smack dab in the middle of my parent’s footprints on our dirt road when they were not watching! They never got a headache when I did it, and somehow it made me feel grown up to prove them wrong.
While there are many patients who never exhibit this behavior, it is a fairly benign manifestation and can be easily managed when you know how to handle it. The behavior looks exactly like the name. Your loved one will literally “shadow” you, sometimes keeping just a step or two behind you and may actually bend and twist in the same directions you do. It is thought to be a form of anxiety, and the shadowing is thought to bring some form of comfort. The behavior itself represents no harm to anyone, and while it can be annoying to have someone following your every move, it is what’s best for the patient when they feel the need to do so.
The most common mistake caregivers make when dealing with shadowing is stopping the behavior before the patient is ready. If we tell the person who is shadowing us, “I need to go into the kitchen and get some work done. You need to stay in here and watch T.V. until I come back,” we may find the anxiety level increases and other behaviors that are more aggressive begin to manifest. The best thing to do when shadowing behaviors are present is to allow the patient to shadow you as long as they feel the need to do so. When they are ready, they will break away and the behavior will cease. Again, the main thing to remember is that stopping this behavior before the patient is ready is not recommended as it can cause increased anxiety, which often leads to other behaviors.
Agitation
A man in the middle stages of Alzheimer’s was found by his wife, trying to access a box of cookies in the cabinet. He was also a diabetic, and his wife kept the food items that would be harmful for him well hidden, but to his delight, he had found the stash. His wife walked into the kitchen and caught him red handed with a mouthful of forbidden fruit. Concerned for his welfare, she scolded him and took the cookies away, reminding him that his blood sugar would be “sky high” if he didn’t stop trying to eat things like that. An hour later he was found sitting in the chair in his room. He had taken all of the clothes out of his drawers and lined everything up on his bed in neatly folded stacks. He had put on three shirts and was putting on a forth pair of socks. He told his wife he was getting ready for work, and “You need not worry about me anymore. I’m a grown man and I can take care of myself!”
This scenario could have progressed to a more volatile situation. The man was agitated. He was exhibiting symptoms of his agitation both verbally and physically with the repetitive dressing. Agitation manifests itself in many ways, and is most successfully dealt with when we help the patient to redirect and reminisce to a better time and place. In this scenario, his wife realized she had been rather hard on him earlier. She outweighed the risk of elevating his blood sugar with the volatility of his current agitation, and chose to use the cookies as the diversion. She called to him and said, “Well, before you go, would you like to share a glass of milk and some cookies with me? You know I hate to eat alone.” It worked. He came out of his room and sat down at the table with a big smile while his wife served him vanilla wafers (better for his sugar level than the chocolate chips he had his hands on earlier) and a glass of milk.
While it is not feasible to always use food as a diversion, it is important to know ways to distract an individual when agitation is present. Maybe there is a particular song they love to hear or sing. If so, play the song whenever needed and you will likely see a calming effect take place. A foot rub, hand rub, listening to music or even dancing can often work wonders. The key to successful intervention with agitation is to be sure and change your approach quickly if what you are trying is not working. When agitation is diverted early, the risk of physical aggression or violent behavior is decreased.
Comfort measures, redirection and the provision of activity that counteracts boredom while creating feelings of success are usually all that is needed to ward off signs of agitation, but there will be some who will require anti-anxiety medication therapy to interact successfully in social settings. It is not always easy to convince someone who is agitated to take their medication. If you find it is difficult to convince them to swallow a pill when needed, talk to the doctor about the various forms of medication that are absorbed topically through the skin. A soothing gel rubbed gently on the back of someone’s hand can be a pleasant experience. You may also ask the doctor if the medication is suitable to be crushed and placed in a food product such as applesauce. These types of medication, while helpful in reducing anxiety, may create other issues to be aware of.
Many of them have a somewhat sedating effect and therefore increase a risk for falls. Caregivers should also be aware that anti-anxiety medications may decrease inhibitions and thus lead to impulsive behaviors when medicated, ranging from crying to an almost manic state of activity. As different people respond different ways, be sure to consult with the physician should the effect of the medication be anything other than positive.
Inappropriate Toileting Habits
Urinating or eliminating in a place other than the commode is not uncommon for individuals with Alzheimer’s disease. There are several reasons for this, including a lack of ability to recognize when elimination is needed and misinterpretation of the physical environment wherein a chair may be mistaken for a commode. You may also find men in particular urinate in corners, planters or other inside areas as they would have outdoors many years ago. Women have been found urinating over garbage cans or squatting in closets. Today’s furnishings and fixtures may resemble yesterday’s chamber pots and outhouses. This increases the opportunity for the environment to be misinterpreted and therefore misused.
The best way to assist one to achieve successful toileting habits is to begin with a toileting schedule. Try placing your loved one on a scheduled routine, taking them to the bathroom every two hours while awake. This helps to “train” the body’s urges to urinate and eliminate around the same times each day. This will help to reduce incontinent episodes as well as eliminating in inappropriate locations. After several weeks of following a toileting schedule, if inappropriate urination still occurs, you may consider purchasing special jumpsuits that fasten in the back, requiring assistance to disrobe.
Another asset to facilitate successful toileting habits is to ensure one’s fluid intake is adequate. This will help to avoid complicating conditions such as constipation or urinary tract infections. A good daily routine would be to offer a cup of water every two hours while awake in between meals. This is best to do just prior to toileting.
Inappropriate Sexual Behaviors
Alzheimer’s disease does not stop us from being adults with adult needs, thoughts, emotions and desires. It does however alter our perceptions and responses to what we perceive. This can sometimes lead to disturbing and challenging sexual behaviors ranging from inappropriate touching of others, touching one’s self in public or attempting to engage other sexual activities.
A good intervention when inappropriate touching of one’s self is occurring is to place an activity pillow in the person’s lap. Activity pillows are easily found on line or could be made and personalized for someone’s special interests. They have colorful zippers, buttons and attachments that capture the attention and help to distract the thought process from the previous activity. Many also have a place to insert a photograph to better capture the individual’s interest. Also helpful may be the use of “busy hand” activity aids such as sock puppets which become both a distraction and a redirection tool.
If the sexual attentions are directed toward others, it is important to determine if there are any events that typically occur prior to the behavior manifesting. Does it seem to happen more often around bedtime? Is it only when they see a certain person? By identifying possible triggers in the environment you can prepare distractions and occupy interests before the event occurs.
If the use of activity aids to distract and redirect are not successful in detouring the inappropriate sexual activity, hormone therapy may be necessary to decrease the libido. As with all medications, review the pros and cons with the physician to be sure you understand how the medication works and what you may expect once therapy begins.
Resistance to Hygiene
Have you ever seen what a bathroom looked like in the 1930’s? A beautiful claw foot tub would likely have been the center of the décor with some sort of wash basin nearby. Bathing every night was something of a luxury, especially in homes that were still fed by a hand pumped well. Contrast our modern bathrooms with granite tile floors, spacious showers and water jet tubs. There is very little familiarity to cue the person with Alzheimer’s this is a room in which to bathe. Rather, it is often a place that is so unfamiliar there is an immediate resistance to entering in.
Another reason Alzheimer’s individuals are prone to resisting care is the fact these tasks are personally invasive. Just imagine how you would feel if someone you did not know started trying to take off your clothes! A natural reaction would be to do whatever was necessary to protect yourself. There are other factors that can cause one to be resistant to care such as feeling cold when clothing is removed or a history of sexual abuse when they were young.
When it comes to decreasing anxiety and combative behaviors associated with bathing and grooming, it is helpful to know measures that have proven successful for others. You may find you have to try several of these recommendations before finding the one or two that work best for you and your loved one:
- Offer bathing and grooming at the same time of day the individual typically did so when they were independent. If they normally took their shower every morning, it is likely attempting to shower late in the evening will not be successful.
- Use verbal, auditory and tactile cuing before attempting the task. You may find it helpful to show them a picture of an old fashioned tub or shower for the visual cuing. Place a wash cloth and bar of soap in their hand and explain it is time to take a bath. Point to the wash cloth and soap individually, calling each item by name.
- If getting into a shower or tub seems impossible due to the level of resistance, try setting up the old fashioned “wash basin” at the bedside and assist them to sponge bathe. This type of bathing may be more familiar and a good option on days when they refuse to bathe otherwise.
- Encourage bathing by announcing a special visitor is on the way to see them and they should want to freshen up to prepare for their arrival.
- Have all items that will be needed ready and within arm’s reach prior to entering the bathroom. Lay the fresh clothing out to assist with visual cuing and show them their favorite toiletries. Did their bathing rituals involve applying powder or deodorant after drying? If so, let them smell the powder or deodorant and comment on how nice the scent is. Did they brush their teeth before or after bathing? Is there a favorite bathrobe or night gown? Including such items in the preparation layout will increase the opportunity for success. In addition to having the items laid out for use, have the water running and temperature adjusted for the shower, or the tub filled and waiting before bringing them into the bathroom.
Some family members have shared with me the only way they could get their loved one to take a shower was to put on their bathing suit and get in the shower with them. If you are comfortable doing this and all of the above fails, you may want to try it and see if it works for your loved one. You should never force someone into a shower or bathtub against their will, no matter how well your intentions are to ensure they receive the hygiene they need. Forcing someone who is in a combative state to do something they do not want to do causes emotional harm and likely physical injuries.
Depression
As Alzheimer’s disease progresses, there is a slow and progressive emotional withdrawal. Because of this, it can be difficult to recognize depression verses disease progression. If your loved one begins to exhibit a sudden lack of interest in their environment, or a sudden decrease in appetite or participation in activities that they usually seem to enjoy, they may be depressed. The best thing to do if you suspect depression is to schedule an appointment with their primary care physician and have them assessed for the sudden changes. The doctor will know best if the symptoms are depression or disease progression.
Caregivers can help depressed loved ones by surrounding them with pleasant memories and life experiences that are still familiar to them. Old pictures of family and friends, newspaper clippings of personal accomplishments or accomplishments of loved ones, awards, treasures, etc. are helpful aids to stimulate a more positive affect and help ward off feelings of depression.
Another way to guard against depression and decrease apathy is to surround your loved one with opportunities for success. Sometimes we take for granted what it means to be able to dress ourselves, brush our own teeth, prepare a meal or even socially interact with another successfully. Alzheimer’s disease impairs one’s ability to accomplish even the most basic of daily tasks. When we are not able to accomplish tasks successfully we begin to feel like a failure. The wonderful thing about opportunities for success is that they can be fun and enjoyable activities that you can share together.
One of my favorites is to take a regular sized, light-weight inflatable beach ball and write one word topics that you know are of interest to your loved one. Toss the ball back and forth, or roll it on a table top back and forth, taking turns closing your eyes and pointing to a spot on the ball. When you open your eyes, you call out the nearest word to where your finger landed and share whatever comes to mind regarding that topic. The word “bird” may stimulate a conversation about the various types of birds found in your backyard, a memory of a special bird, or even having fun imitating bird calls. “Flower” may bring to mind family trips to pick wild flowers on a country road, or due to the sound alike word association, a conversation on how to sift “flour” may arise.
There are so many wonderful, fun, interactive and creative ways to provide opportunities for success for Alzheimer’s patients in the home setting. Try keeping skeins of brightly colored yarn on hand and have them help you roll the yarn into balls. Keep a small basket of assorted colored socks on hand and ask them to help you sort and fold the socks. Ask for help with small household chores such as wiping off the table, dusting with a feather duster, or placing napkins out for dinner. Once you begin to look for ways to accomplish this goal, you will find it fun and rewarding to add more and more ideas to your loved one’s daily routine. Recreational activities such as balloon volleyball from a sitting position, playing charades, singing together, and making simple crafts such as construction paper cards are also quite helpful tools.
I found it interesting to learn one of the last motor skills we lose as the disease progresses is the ability to mimic. I have had a lot of fun engaging in face making contests and playing Simon Says. It is not uncommon for someone who can no longer carry an intelligible conversation to still be able to participate in such basic activities. Be willing to explore and try new things to determine what your loved one responds to and seems to enjoy the most. This will certainly give you a greater chance of success in dealing with the daily activity needs of your loved one.
For some individuals, activity therapy alone will not be enough to break the depression cycle. In such cases, physicians may prescribe certain antidepressant medications to improve the overall affect and interest level. It is important to know what the desired effects and potential side effects are of any medications prescribed, especially to someone who has difficulty communicating their needs. Read the drug information sheet and discuss concerns with your loved one’s physician so you are able to recognize side effects and adverse reactions should they occur.
A caregiver’s reality often revolves around the task that has to be completed, when it needs to be done and what should not be done: It’s time to eat! You need to take a bath now! It’s time to go to bed! We have to get ready to go the doctor now! You can’t do that! You can’t go there! While all of this may be true, the Alzheimer’s patient often has different realities that change from moment to moment: I already ate! I don’t need a bath! I can’t go to bed because it’s time to go to work! Don’t tell me what I can and can’t do! With such diversity between the caregiver and the patient it is easy to see why conflict and frustration often occurs.
To facilitate successful care we must be willing to stand down, replace our schedules and mandates with whatever place and time we find our loved one to be, and accept their reality as our own. When they refuse to eat their supper, telling you they have already eaten, try saying something like this: “I know you have already eaten, but I don’t want to eat alone…would you mind eating just a little with me?” This is how we walk beside our loved ones, gently guiding them through tangled thoughts and altered realities, to better places where life may be lived and enjoyed to the fullest extent possible.
Posted in Alzheimer's and Dementia Care, Perspectives on Alzheimer's, Resources on March 29, 2014