Being a caregiver for someone who has a memory deficit can be extremely challenging. It becomes even more difficult when that person is unaware of their dementia or any other limitations associated with it. Dementia can directly impact a person’s ability to follow directions, can compromise their safety, impedes problem solving and abstract reasoning. It can cause them to be impulsive or unrealistic about their abilities. There are things you can do and approaches you should avoid as a caregiver facing these parameters.
From an emotional standpoint it can be extremely frustrating for a person with dementia to be told they should not be doing tasks they believe they are very competent to manage. Any caregiver trying to create a safer environment may be on the receiving end of angry outbursts and defensiveness from the person with dementia whom they are trying to keep safe and protect. Here are some suggestions about how caregivers can approach working with a person with dementia who is unaware of it:
Communicate in a calm manner.
Be as empathetic and supportive as you possibly can. Be aware of the tone of your voice and the message you are sending and how it is or is not being received. Also be aware of your body language and facial expressions and what they convey.
If you find yourself starting to get angry or stressed remove yourself or take a time out for your own sake rather than arguing.
Take a break from the conversation or task at hand. If it safe to remove yourself from the person you are watching give yourself a few minutes to take a deep breath, regroup your thoughts, and calm down.
Try to separate the person from the disease.
This is tricky but important. Remind yourself the person with dementia is not intentionally trying to be contrary. The disease is causing their memory loss or inability to do the things they used to. Sometimes recognizing why someone is behaving in a negative way helps you get to be in their shoes and makes you feel less attacked and more understanding.
Don’t engage in arguments about who is right or wrong.
That won’t help anyone. All that does is reinforce the deficits the people with dementia has causing them to dig in and not do what you need them to do. Does it really matter if they think it is Thursday and you know it is Friday? The best thing to do is to distract or disengage from that conversation and focus on something that is neutral or something you know they will enjoy. People with memory problems may confabulate, or make up answers to explain things that happen. Just let them say their version of events and then move on to something else.
Try to pick tasks you can do together and work as a team.
Everyone wants and needs to feel wanted and useful. Maybe they can help put laundry in the washing machine or put dirty dishes in the dishwasher. Even if they make a mistake you can always pull the dirty dish out later if the dishes were clean.
Try to create as positive a relationship as you can.
Be friendly and warm with the person you are caring for. They will be more apt to work with you than against you if they sense you are on their side or feel friendly towards them. You can do this by trying to give them as much control as possible about things that need to be done, and when and how they should be done. This makes them feel better when they believe they are making these decisions.
Give them two choices that are both acceptable options.
For example, lay out a blue and red shirt ask them to pick the one they want to wear that day. Do you want chicken or tuna for lunch today?
Break down the task that need to be done in as few and simple steps as you possibly can.
Make it as easy as possible for them to do chores or tasks. Have the watering can out and put water in it and the flower on the counter.
Don’t infantilize the person.
Don’t talk around them or about them when they are in front of you as if they were not there. Talk directly at them using their name. It is important to continue to reinforce people and their names to enhance memory.
Don’t remind them what they can’t do and reinforce what they can do.
Nobody wants to hear all of the things they can’t do. It is human nature to crave approval from others. Maybe grandma can’t play guitar anymore but she still has a beautiful voice. Pick a song you know she can sing and ask her to sing it for you.
Validate their fears or concerns.
Try to express your understanding about any fears, frustrations or anxiety they discuss. Be as empathetic as possible and validate their feelings as best you can. If they express fear for example, tell them “I know you were scared by that loud noise, I would be too. I am going to see what I can do to make it stop or make the noise less loud.”
One of the most difficult aspects of being a caregiver is having to cope with aggressive or other challenging behaviors that the person you care for exhibits. Other examples of challenging actions includes hallucinations, verbal abuse, anger, running away, taking clothes off, swearing, agitation, lack of appreciation. One of the secrets is that as a caregiver your response is a key on managing them and can influence the future reoccurrence.
The first thing to do is understand why these behaviors are occurring. The answer lies in 3 areas for people with dementia. People react in this way because of fear, confusion, and pain. They feel helpless or afraid and react to protect themselves. The first thing to do as a caregiver when these difficult behaviors erupt is take a step back and try to understand what is happening that is triggering them.
Dementia directly impacts the brain. It causes people to act in uninhibited, unfiltered ways. It directly impacts our ability to think, find words, or control feelings or what we do. It causes confusion. Take a moment and imagine what that would be like for you. It also tends to exacerbate the personality traits the person had prior to the onset of the dementia. If you were a mean person before your diagnosis, those men traits may come out in a more intensified way as your condition worsens.
As caregivers we have to remember that people suffering from dementia still need to be respected. They want their wishes to be considered. They also want to feel they have some control over their environment. What may be surprising is sometimes they even regret these negative behaviors. They might not be able to express those feelings but it is important for caregivers to be aware they are there.
Caregivers can do some things to help manage these incidents when they occur:
- Try to identify the cause of this behavior. Why are they reacting this way? What are they afraid of? What are they feeling? Try to make sense out of the reaction of a loved one.
- Respond in a calm and comforting manner. Don’t argue. That will trigger more aggression. Don’t force the issue to prove you are right and they are wrong. Nobody will win that battle. Remember your body language. Smile and appear relaxed. Use direct eye contact. Be aware of the tone of your voice and the messages you are sending both conscious and unconscious.
- Take a moment and imagine not knowing where you are. People often become combative and want to leave a place because they don’t recognize where they are. Try to gently redirect the confused person. Play a favorite song, go for a walk, take out a photo album. Use pictures or other concrete, tangible cues to help them focus and understand where they are at and why they are there. Keep your responses simple and direct. Say something to acknowledge their feelings like “I know it is confusing”, or “we can’t go now because it is very late or it is pouring rain” or whatever makes sense for you. Think about a response that will help them feel safe, cared for, and gets to the root of their fear.
- Pay attention to patterns of behavior. Do these episodes occur at a particular time regularly? Some people experience sundowner syndrome where they get more confused as it gets dark. Did something happen to trigger these episodes? What happened before they got agitated?
- Look at the environment. Is there too much noise or stimulation? Is it too hot or too cold? Are there certain people that seem to upset the person receiving the care? Is being in a new place problematical and perhaps confusing?
- Validate their feelings. Be understanding about what they are trying to communicate even if it is difficult to perceive. Try to collaborate rather than confront the person you are taking care of. If you overtly challenge what is being said or express doubt about it that can trigger an angry episode.
- Become a master of distraction. Try to use distraction as a technique to manage negative episodes and outbursts. Think about their favorite foods, hobby, music, photographs, clothing, or television show. Sometimes talking about people they like can ease the tension. Pay attention to what works and have it on stand by when a new outburst occurs.
This is very hard but also very important: Try to separate the person from the disease.
Dementia damages the brain and so people experiencing it are unable to control their thoughts, actions, feelings, and behavior as a result. Try not to personalize the negative interactions. Set boundaries for yourself and the person receiving care regarding physical safety. You cannot permit violent behavior that might potentially harm you or the person you are caring for. If this happens consult a physician about how to manage this issue. Take a time out for yourself if you need it. You must take care of yourself as a caregiver. That may be the most important tip of all.
I think about my mother a lot. A flood of memories comes over me as Mother’s Day grows closer. My mom was a beautiful, strong willed, loving parent. Our house was the place all our friends hung out. My mom would hold court at the kitchen table and they would seek her counsel on dating and share their secrets with her. She died 32 years ago.
An initial diagnosis of breast cancer happened while I was still in college. She wasn’t going to tell me about her upcoming surgery because I was away at school. I sensed something in her voice on my weekly phone call and forced my parents to tell me what was going on. I rushed home to be there for what turned out to be a radical mastectomy. I acted as an advocate for my folks and came home regularly. My mom did great for 5 years. Unfortunately the cancer metastasized to her bone and eventually moved to her brain.
Mom wanted my father to be her primary caregiver and made it clear she would remain at home. During the remaining 2 years of her life the cancer ravaged her body and her mind. She would not allow us to get any outside professional help. She was weak and needed help with moving around, bathing, and dressing. She would let her kids help her minimally with some reluctance.
For both my father and me the most difficult challenge was the massive personality change that occurred when the cancer entered her brain. She became an angry, verbally abusive, aggressive woman. My dad had a difficult time dealing with it. So did I. She threw me out of my childhood home at one point with our provocation which felt so hurtful. I wondered how my dad could tolerate the ongoing abuse?
Incredibly for us on her final day on this Earth my old mother returned. I had told her my brother and sister were on their way from California and New York to be with her. The doctors had told me she could die at any moment. My sister, father, and I held a vigil at her bed and then it happened. She came back to us. There were smiles and words of love exchanged. To the amazement of the doctors she waited until all my siblings arrived that night and said her loving good byes to them. Then she peacefully slipped away.
I am much older and fortunately wiser now. I have the benefit of 40 years as a medical social worker and life experience. I have thought about what I would say to my father and my younger self with the benefit of that knowledge:
- I would remind us that the mean person she became was not her. It was caused by the cancer, a disease whose symptoms she was helpless to fight or control. It is important to separate the medical condition from the person. I know that is hard at difficult moments. I remind myself of that when I recall that awful day she threw me out. I have come to understand and believe this is true. I choose to remember the loving mother I had.
- My mom was young when she got sick. She was only 50 years old. She and my dad never had a discussion about what she would want to happen if she became ill. No advanced directives were in place outlining her wishes about medical care, life support, or anything. It would have been so helpful to know her wishes and a source of comfort to us knowing we were carrying them out.
- Finally I watched the physical and emotional toll that being the primary caregiver took on my father. He was almost 70 years old when he was fulfilling most of the caregiver needs for my mom. He told me multiple times that he wanted to stop or at least take a break but he didn’t. He was burned out, angry, and stressed out. Dad did not let us help too much because he wanted to honor my mom’s wishes. The problem was she was not thinking clearly due to her illness and the demands she was making were virtually impossible to fulfill. I would have advised him to take more respite time and get additional professional help on top of what we were able to offer my parents.
It is always easy to look back with the passage of time and think about how we might have managed the care of both my parents differently. The lessons learned from this experience helped my father and I as he aged and needed a caregiver. The directives were there as was many conversations between us that created a level of trust and understanding. We altered the level and intensity of care he needed as his medical condition altered with him and it was a collaborative effort among my siblings and my father. We helped him to die with dignity at age 96 feeling his wishes had been honored. That gave us all a measure of comfort that will stay with me forever.
We all recognize that caregiving is a complex task. It can bring a new closeness with the person you are caring for. It can inevitably bring a flood of emotions including compassion, nostalgia, gratitude, devotion, frustration, grief, sadness, love, guilt, and anger.
Anger is an emotion that is particularly challenging for caregivers. It is normal that at some point in the caregiver relationship it will appear. Often times when your role is not acknowledged or the person you are caring for is agitated or aggressive the stress of this role feels overwhelming. You are also simultaneously coping with the grief of losing the person you knew which is an additional component. The reality is unexpected behaviors or medical problems can happen. In your role as a caregiver you cannot always stop or control these situations making you feel helpless and isolated.
The first thing to recognize is anger is a normal reaction. Caregiver fatigue evolves from daily physical and emotional exhaustion. You may become emotionally raw. Do not chastise yourself of feel guilty when you have moments of high frustration or anger. You are human and nobody can always balance all aspects of their life, family other relationships, work, other life commitments in a seamless way. There are things you can do and need to know as you find yourself experiencing these feelings:
Recognize that you are making a difference even when it doesn’t feel that way
Think about what care options would be available if you were not there and how significant your role is.
Be kind to Yourself
Forgive yourself for moments when you become frustrated and angry. Focus more on the countless times when you were patient and compassionate. Allow yourself to have moments of imperfection.
Allow Yourself Respite
Be aware of your own body and feelings. Don’t wait till you crash physically or emotionally from your caregiver responsibilities. Be proactive on your own behalf and get additional support from a relative, friend, of healthcare professional, or respite care program. Give yourself time to recharge. It will benefit you and the person you are taking care of.
Take a Moment to Consider Why You are Angry
When someone is yelling at you or being physically aggressive it is hard not to get angry. Carefully consider why the person you are caring for is doing things to make you angry. Maybe their behavior has nothing to do with you. Perhaps their medical condition creates poor impulse control or memory and they can’t help but ask you the same thing over and over again. Maybe they don’t recognize you and are afraid you are a stranger and they are reacting out of fear or confusion. Maybe they are having a reaction to a medication. Sometimes understanding the reasons for their behavior can soften your reaction. Your feelings about caregiving will change moment to moment.
Incorporate Some Fun Into Your Role as a Caregiver
Think about something you would like to do that could bring some relief from conflicts. For example turn on some music and dance. Music can have a soothing affect on all concerned. Pick a favorite movie and watch it together. Take out old photos and reminisce. That can be meaningful for both of you.
If trying to get dressed becomes a battle just stop. Focus on something else and come back to it later. Give the person you are caring for limited choices when appropriate. For example, would you like to wear your blue or red shirt. Have them both out so the person you are caring for can choose. This way you both feel like you have some control which helps reduce frustration and anger.
Identify Healthy Ways to Release Your Anger
Maybe you will feel better after you kick a ball or punch a pillow. Maybe going in another room and saying what you would like to say letting it out will help. This release will help calm you down so you can move forward with it taking less of a toll. Physical exercise releases tension and can lift mood. Can you take a walk, do jumping jacks, yoga, or meditation? Think about what feels right for you. Writing can be a great release. Write your feelings down or what you would like to say. Transfer your feelings into a poem. You don’t have to share it with anyone. It is another form of healthy release.
Don’t spend time Getting Upset about Things You Cannot Control
This takes extra time and energy you don’t have. Remember you cannot necessarily control the actionsof the person you are caring for. You may have a big fight yesterday. The person you care for has no memory of it today. Try to leave your anger behind. Focus on what you can control which is your reaction and attitude. Start fresh today.
Recognize You Cannot Change Past Relationships
You may be caring for a person whom you had a past conflict ridden relationship. This impacts your role as a caregiver. You need to closely examine its impact on you. Maybe you are not the best person to assume this role.
The biggest mistake caregivers make is not taking time taking care of themselves. You need to identify a person you can candidly talk to about the challenges of your caregiving experience. Another great source of support are caregiver groups or on line caregiver chat sites where you know others understand and have empathy for what you are experiencing. Finally, a healthcare professional with expertise in this area can offer counseling to help.
Iris Waichler, MSW, LCSW is the author of Role Reversal How to Take Care of Yourself and Your Aging Parents.
One of the hardest challenges I experienced in caring for my father was helping take care of him when he was hospitalized. His memory got worse and his confusion was heightened being in a new setting. He suddenly became aggressive and agitated and had to be temporarily restrained which increased his agitation even more. I felt helpless and heartbroken.
It is not unusual for seniors to find themselves facing some type of medical problem due to a medical condition or accident that requires hospitalization. When you add that condition to someone who already has memory loss or confusion the need for specialty care becomes elevated. The first thing to do is understand why a hospitalization can trigger these types of reactions:
- They may be in pain or uncomfortable because of the medical problem and not understanding why they are in the hospital. They may have to undergo medical treatment like x-rays, injections, IV’s, catheters, that can be very frightening and painful.
- Their regular routine has changed and they may be unable to sleep in a hospital setting causing more confusion and fear.
- They are in a new place with hospital staff that are strangers coming in their room all hours day and night which can be very frightening and confusing.
- Delirium, or sudden mental confusion, can occur with a hospitalization. It can be triggered by an infection or extreme stress. Even people with no memory issues can suddenly have an altered memory status.
Now you have an understanding of what the potential reasons for enhanced memory or
behavior problems are. It is important to note there are concrete steps you can take to help
manage these problems or at least try to reduce the severity and longevity:
Work With Hospital Staff at time of Admission
The hospital staff needs to understand what your loved one’s baseline memory and functionality is so they can act quickly if changes are noted.
Have a Familiar Family Member Spend as much time as possible with the patient
Having someone your loved one knows be close by to help advise staff and calm the patient is very important. Just seeing a familiar face can reduce agitation and anxiety.
Discuss Hospital Policy on Management of Patient with Aggressive Behaviors
Talk to a doctor and hospital staff about what they recommend when these instances occur and patient and staff safety become problematical. They may suggest restraints or medication that can calm the patient. Make sure you are OK with the plan. Do you want to be contacted if this occurs? Are you against the use of restraints? Ask about other options like a sitter or an alarm.
Consistency of Staff and Routine
Request that your loved one has the same nurse, nurses aide, or other staff when they are working. Having people a patient is familiar with can reduce the incidence of behavior problems or enhanced memory issues. Also having the same routine every day can be helpful. For example meals and physical/occupational/ speech therapy sessions at the same time can help orient a patient.
Placement of Patient
If your loved one is disruptive have him/her in a room closer to the nursing station and without a roommate. This helps ensure staff will be more attentive as issues arise. Not having a roommate disrupts the frequency of unfamiliar people coming in and out possibly causing regressive tendencies.
Visual and Verbal Reminders
Try to have a clock and calendar visible to help orient your loved one. Have photos of family members with names on them. When visiting, speak softly in short sentences identifying who you are. Be in front of the your loved one by their face so you can be seen and they are aware you are there. Hospital staff should be advised to also use these techniques. Remind patient’s why they are in the hospital. Refer to your loved one by name or relationship, i.e.. “Dad this is Iris, your daughter.”
Use Calming Techniques
Using a smile or gentle touch can go a long way to calming an agitated person.
Don’t dispute or argue about what they are saying. Instead try to understand why they are saying it. My father told me he saw a cow outside his hospital room. Rather than discounting it I looked out his window. I noticed a piece of construction equipment that was oddly shaped and looked like it might have horns. I asked him if that was the cow? It was. Use reassuring words. If they seem worried about something ask why.
Don’t try to rush them into doing something. Allow time for them to prepare and explain what is going to happen in understandable steps. Offer reassurance that you will be there as things that might cause anxiety will be happening.
Bring Familiar Items from Home
If your loved one has a special pillow, blanket, clock or photograph, bring it to the hospital. If they like specific music, use that as something to do together during your visit. If they wear glasses, dentures, hearing aids make sure they are there because that can help with communication and orientation. Things can easily get misplaced or disappear from a hospital room so keep track of where they are placed as much as possible.
Good communication is a key component in making the hospital stay go as well as possible. Make sure that information about your loved one’s deficits is placed in their chart, their care plan, and if there is a board in the hospital room for special care instructions place it there. Also you can write this information on a piece of paper and hang it on the wall near their bed. If you see new staff working with your loved one, make sure they are aware of any special concerns or care needs. These steps can bring peace of mind and lessen anxiety for all concerned parties.
If you have a loved one who is aging the issue is not if but when a time will come that additional help may be needed. In my experience as a medical social worker and a caregiver for my parents I know this is a conversation that is very difficult to initiate. Nobody likes to talk about aging, illness or death. Let’s be honest, this is something we all will face. This conversation involves tackling tough topics:
- Getting sick and not being able to care for yourself.
- What do you want done if you are unable to make medical decisions for yourself.
- How do you feel about aging and eventually facing your own death?
- What insurance or money do you have available if you need additional help?
- Is it time to leave the place you have called home?
- Is your will or healthcare power of attorney properly completed?
You want to start this conversation from a place of love and caring. It also has to be a collaboration. You also have to start slowly and be aware that it is a process. This will not be one discussion but a series of talks over time as circumstances change and new challenges may arise.
There are things you can do to help it go as smoothly as possible:
Begin the conversation when your parents are alert and healthy and can make decisions from a competent place. They will be more comfortable and less defensive having this discussion when there are no current problems or deficits.
Wait for an Opening or Create One
Move slowly. Mention a friend whose parents are ill or that you are updating your will. Suggest that it got you thinking about your mom and dad. Ask if they have thought about aging and what they would want to happen? What kind of help would they want and from who? Would they want to remain at home or consider moving to a place where more support might be available?
Share the reason you are wanting to talk about this. You want them to be safe, prepared, and understand what options are available for them. You are not angry at them and don’t believe they are incompetent if that is true. Tell them you want them to continue to have as much quality in their life as possible and you want to contribute to make that happen.
Make sure the time you initiate this discussion is optimal. Don’t do it when you have to leave in half an hour. Do it when there are no distractions or additional people that don’t need to be a part of the conversation. Don’t include too many people because that may make your senior feel more defensive. Choose a stress free time to initiate this talk.
If you have a good relationship with your parents than you may be the ideal candidate to initiate this talk. If not you may want to include a trusted family member friend, doctor, priest, neighbor, that can help your loved ones feel more comfortable about addressing these sensitive topics. If you are doing this with someone else you may want to meet ahead of time to plan on what direction you want the conversation to go and who will play what role. Rehearse what you want to say and try to anticipate their responses. Make sure the message you give your parents with someone else is a unified message.
Choose the opening topic
You don’t want to throw out all of these major questions at one time. That will feel overwhelming and cause any future discussion to derail. Pick the topic that you believe is most relevant to them and one that your parents will be most open to.
Maybe they just came back from a doctor visit. You can use that as a place to begin to address questions about potential health concerns. If you know they are feeling their home is becoming harder to maintain that gives you an entry way to ask about what their thoughts are about the next step if the house becomes increasingly hard to manage.
Some Final Thoughts
If the conversation does not go well don’t be discouraged. A process has begun that you can return to and reference at a future date. Take notes about what has been said. Perhaps you can all agree on a future time to set including whatever requests your parents make regarding the parameters. Maybe the participants can agree to gather information to facilitate the next meeting. Ask your parents if there is someone else they would like to attend future discussions.
Try to remain empathetic and compassionate with each other as you enter this uncharted water. If it is clear you need an impartial mediator to manage the discussion you might want to get a geriatric care manager. They can be found at aginglifecare.org.
Finally, be patient. This is new territory for you all. When a parent agrees to work through these issues, there is no greater gift they can give you.
Holidays are often considered a time for celebrating. We honor traditions and reminisce about past holidays and the people we shared them with. The very thing we love about holidays can be the source of pain and renewed grief if someone we love is no longer with us to share in these moments.
Why is this time of year so difficult for those of us grieving the loss of a loved one?
- It reinforces the idea that things will not be the same without that person.
- You may feel some guilt for trying to celebrate a holiday or special occasion.
- Awkward, painful moments may arise while celebrating that magnify the loss.
If you recognize that the upcoming holidays may be challenging there are some things you can do that will help you to cope. It means you may have to be proactive and plan ahead but this will be time well spent.
Ways to Cope During the Holidays
- Honor old traditions if that feels good. If not create new traditions that are meaningful.
- Give yourself permission to get more support from family, friends, counselors, clergy.
- Think about previous ways you coped with losses in the past that were successful and revisit them.
- If the stress of gifts, cooking, being social, feels too stressful/painful, ask family or friends to help with cooking. Ask for a year off buying gifts. Ask for permission to take time off to take care of yourself and focus on self care. It is OK to take time away from the festivities if you feel you need to.
- Be proactive. Have an honest discussion with the people you normally spend time with at a holiday and discuss what you would like to do and why. That helps you feel like you are not planning on your own and it is more of a group, co-operative event. You may not all agree but at least you will understand everyone else’s position.
- Find new ways of honoring the memory of a loved one. If they loved flowers plant or donate a tree. If they loved children, donate to a children’s charity in the name of your loved one. Maybe you might want to volunteer at a program that was meaningful to a loved one who has passed away.
Iris Waichler, MSW, LCSW
Iris Waichler has been a patient advocate and licensed clinical social worker for 40 years. She is an award winning author. Her latest book, Role Reversal How to Take Care of Yourself and Your Aging Parents received a Finalist Best Book of 2016 Award from USA Books. Ms. Waichler has done individual, group and family counseling with patients and families facing catastrophic illnesses. She has done freelance writing on health and patient advocacy topics for 16 years. Her website is www.iriswaichler.wpengine.com
Mom’s Choice Gold Award Winner for Best Book of the Year.
Winner of the National Parenting Publications (NAPPA) Gold Award for best book of the year.
Winner of the finalist award for Foreword Magazine 2007 non-fiction Book of the Year.