13 ways to enjoy the holidays with your relative with memory loss

Holidays bring families together to share and observe cherished traditions. But for a relative with memory loss, the holidays can be challenging—especially as we move into our second pandemic holiday season.

These thirteen suggestions can help you plan holiday celebrations that include your loved one with memory loss:

  1.  Recognize that holidays are not the same as they have been in the past. Gatherings may be smaller. Common feelings of loss, sadness, and anger at the disease of dementia (not to mention covid) may be heightened. Talk with other family members who may be experiencing some of these same feelings.
  2. Give yourself permission to do only what you can manage. Ask family and friends for their ideas on how to make it a safe, enjoyable and manageable holiday.
  3. Try altering traditions, not eliminating them. Help your relative enjoy the spirit of the holidays. Holiday baking, holiday cards, sing-alongs, gift wrapping, being with grandchildren, etc. can be adapted to your relative’s abilities, schedule, and immune system. A short, simple activity is often preferable.
  4. Consider celebrating with your relative before or after the holiday. Celebrating a few days before or after may be more manageable and less stressful for everyone. A holiday is still a holiday wherever and whenever you celebrate it.
  5. Plan smaller gatherings. In smaller groups, the person with memory loss may find it easier to process what is being said and be part of the conversation.
  6. Focus on connection and communication. Equip your family to move and talk slowly with your relative. People with memory loss need more time to process who you are and what you are saying and doing.
  7. Maintain your relative’s routine as much as you can to avoid increased confusion. Try to schedule activities around your relative’s best time of day or at meal times.
  8. Be alert to signs of fatigue and increased confusion. Some people in the early stages of memory loss may retreat to a quiet place such as their bedroom when they feel overwhelmed or overstimulated. If your relative is in the later stages, watch for signs that she may need a break: changes in facial expressions, tone of voice, or behavior.
  9. Help prepare visitors. People who have not seen your relative in a while will appreciate knowing what to expect and do while being with your relative. Say something like, “I thought it might be helpful for you to know how mom is doing before you see her. Mom is having more problems remembering and recognizing people. Although she may not recognize you, I know she will appreciate your company, and so will I. Please don’t think it is strange when I introduce you. Sometimes this helps her be more relaxed.” Remind them that compassion is key to understanding your relative’s changing brain and behaviors.
  10. Think through where your relative is most comfortable. Taking the holiday celebration to your relative may be better than taking your relative to the holiday celebration. We know that as dementia progresses, routine and familiar environments become increasingly important.
  11. Keep it simple. It’s not how much you do but the enjoyment you and your relative receive from doing things and being together.
  12. Keep your relative covid-safe.  Older adults are more vulnerable and people with advanced dementia often have impaired immune systems as well.  Think carefully about how to keep your relative safe, whether it is with a very small gathering, wearing masks, meeting outdoors, making sure everyone is vaccinated or whatever measures you can bring to the holidays to ensure safety.
  13. Ask family and friends to get tested before the gathering, even if they are vaccinated. Covid tests are available at some clinics as well as pharmacies such as Walgreens, Target, Rite Aid and CVS.

We wish you and your relative with memory loss a warm, safe, holiday season full of meaning and connection.

Beth Spencer and Laurie White

Dementia Care Books

, ,

Helping someone with dementia recognize and interact with you

During the COVID pandemic, recognizing a friend, co-worker, or neighbor wearing a mask has been challenging.  While a person’s eyes give us some clues to the person’s identity, it often isn’t enough. We don’t have the benefit of seeing a person’s mouth and facial expressions. And masks often muffle our voices, making it harder to hear and understand.

This is especially true for people with dementia. Laurie has a friend, James, whom she met shortly after his diagnosis five years ago. They would talk, laugh and converse weekly about many things including his diagnosis. During the pandemic, Laurie didn’t see James for the better part of a year. She kept in touch with his wife, who said that while James’ dementia had progressed, he was pretty much his same old self.

When finally Laurie visited James, she wore a mask, as requested. She was excited and nervous to see James, as she wasn’t sure he would recognize her. He didn’t. When his wife said, “James, you remember Laurie, right?” James looked at Laurie quickly, shaking his head no.  When she took off her mask and said his name, he recognized her immediately, gave her a hug and they talked for a short time.

This experience reminded us of the importance of giving a person with dementia every chance we can to recognize and interact with us. This becomes harder in the later stages of dementia, but we believe that we never know when a person might recognize us. Keeping these points in mind may help you and your relative or those who work with your relative.

  • Whenever it is safe and allowed, remove masks, so that you can see each other’s entire face.
  • When you approach someone with dementia, move and talk slowly. People with dementia need more time to process who you are and what you are saying and doing.
  • Start by saying the person’s name and then introduce yourself. “James”. PAUSE. “It is Laurie.” PAUSE. “I am so happy to see you.”
  • Keep the conversation short.  Use simple phrases, especially if your relative or friend is in the later stages.
  • Maintain eye contact as much as possible. This often makes the person more comfortable. Try to be at their eye level, rather than above or below. In some cultures, it is rude to maintain eye contact.  If this is true in your culture, be sure you educate those who interact with your relative about this.
  • Recognize signs that your relative is becoming tired or agitated: wringing hands, facial grimaces, restlessness. If this happens, you might try involving your relative in another activity such as walking in the garden, having a snack, or just sitting together quietly.

As people with dementia become non-verbal, it doesn’t mean they can’t understand what you are saying. Some people with dementia will understand what others are saying long after they have lost the ability to speak. You can find many pointers for talking with your relative with dementia in our book Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, which equips you to address communication challenges throughout the stages of dementia.

Laurie White and Beth Spencer, Dementia Care Books

, ,

Caregiver tips for sheltering in place

Like many of you we have been ordered to “shelter in place” (Beth in Michigan, Laurie in California) to help curb or eradicate the COVID-19 virus. Although it is an inconvenience, we cannot help but think of all the caregivers for relatives with dementia.

Adult Day Centers are closed. Some family members are working from home, making it difficult to give full attention to their relative. Family members and friends can only visit with relatives in assisted living or skilled nursing communities through the window or on the phone or, in some cases, not at all. Caregivers caring for a partner or a parent at home may find it especially stressful as there may be no one who can stop by and provide a break.

Cancelled flights have separated adult children living a distance from a parent with dementia. From a daughter who lives far away from parents who are home alone, desperate about what to do after her flight was cancelled:

“I have not seen my parents in 6 months and was planning to visit in late March until the COVID-19 virus. My mom’s doctor said contracting an illness like pneumonia could have devastating effects on her FTD (Frontal Temporal Dementia) prognosis; I presume COVID-19 could be a similarly bad situation. My dad is with her, but he has heart problems and an underlying respiratory condition. What would happen if one of them became ill with COVID-19? I am frantic not knowing what to do.”

Whether family members live with, close by or far from their relative with memory loss, it can be a stressful time. Here are some suggestions that may help you:

Staying healthy

  1. Know signs and symptoms of the virus. If you suspect your relative may have COVID-19, contact their doctor immediately. The number of testing sites offering testing is increasing daily. Learn more at the Center for Disease Control website or your county health agency.
  2. Know other illnesses that may cause increased confusion or agitation in people with dementia: Infections, dehydration, fever, and pain. If in doubt, call your doctor.
  3. Minimize your relative’s contact with other people. Older adults are more vulnerable to this virus than younger populations.
  4. Wash hands thoroughly throughout the day. Having favorite music in the background or washing hands together may help your relative be more willing to wash her hands. If this is not possible, try using hand sanitizer often. Check the Environmental Protection Agency website for recommended products to sanitize surfaces.

 Logistics

  1. Ask your relative’s doctor about filling prescriptions for more days. This may reduce the number of trips to the pharmacy. Pharmacies are considered an essential business and are open.
  2. Some essential businesses are abbreviating their hours. Call ahead if you are planning to go to the grocery store, the bank, etc.
  3. Some home care agencies are open for business. If you are feeling more stressed, and a home care agency is already providing care to your relative, consider asking for more hours. If you are not using home care services, consider calling and asking if they are taking new clients. There may be a shortage of home care workers, but it is definitely worth asking.

Caring throughout the day

  1. The book Best Friends Approach to Dementia Care, by our dear colleagues David Troxel and Virginia Bell, offers information and strategies to help caregivers get through the long days of caregiving. Caregivers have and will surely find this timeless book helpful.
  2. A person may become more confused because their routine has been disrupted. Try to stick to the same daily routine each day. If confusion leads to behavioral problems, our book Coping with Behavior Change in Dementia may be a helpful resource.
  3. Eliminate coverage about the virus on your TV or computer. People with dementia may not understand it and become frightened or agitated hearing about the seriousness of the virus.
  4. The stress you might be feeling is contagious and your relative may feel it too. Although she may not fully understand COVID-19, she may feel upset which can lead to a change in behavior such as agitation or sleeplessness.
  5. Take walks, keeping a safe distance. Being outside and getting some exercise can reduce stress for both of you.
  6. Share activities. Look at old photos together. Try a jigsaw puzzle. Involve your relative in a household activity such as dusting, vacuuming, etc. Try doing a favorite hobby together, or baking cookies, cleaning the toolbox, sorting clothes or coins.
  7. These are stressful times for all of us and it is important to take care of yourself. Yoga, meditation, a short walk, eating and sleeping well are very important right now. Reach out to a friend on the phone. Scheduling FaceTime sessions with friends and other family members can help with feelings of social isolation.

Caring for yourself

  1. Many Alzheimer’s Association chapters are offering virtual caregiver support groups. Visit Alz.org to see if the chapter near you is offering a group.
  2. Ask for help. Take help that is offered to you. Neighbors, friends, high school students, and Eagle Scouts are reaching out to do errands such as pick up groceries or medications, help with outdoorhandling transitions in dementia care chores, or take a walk with your relative (If this is offered, ask the volunteer about any possible exposure to others within the past 30 days.)
  3. Some therapists are offering phone or video therapy sessions.  There are also hotlines if you are feeling desperate, including the Alzheimer’s Association’s 24/7 helpline, 800.272.3900.

We wish you all the best as our country goes through this difficult time.  Hoping for all caregivers and their relatives to stay well.

 

Laurie White & Beth Spencer, Co-authors, Coping with Behavior Change in Dementia and Moving a Relative and Other Transitions in Dementia Care.

 

,

Understanding brain changes is key to compassion

Pat’s dad can’t remember from moment to moment that he has a brain disease affecting his ability to live alone.

Sara can get herself out of bed—but doesn’t know what to do next. She needs someone to prompt her through every step and help her get them in the right order.

These are frustrating situations for people with dementia and their care partners. Understanding more about brain changes caused by dementia can help us respond with compassion and patience.

Dementia changes the brain, and those brain changes also affect a person’s thinking and ability to function. The type of dementia will affect how and when these changes occur. Many affect what we call “executive function”—the cognitive areas that let us get through our days, perform routine tasks, make decisions and solve familiar problems. When these functions are impaired, the result may be inability to think clearly, do routine tasks, and make good decisions.

Most troubling can be anosognosia, or lack of awareness in the presence of a neurological illness. Pat’s dad can’t remember that he has a brain disease. He doesn’t see any problem with living alone and resists the idea of moving in with Pat.  It’s hard on Pat, too. She remembers a father with good insight into his life and situation.

“A person can abstractly understand that they have an illness, but not be aware of how it is affecting them,” says Mariana Longoria Ibarrola MD,  a brain health expert who contributed a chapter to our book, Moving a Relative and Other Transitions in Dementia Care. “Loss of insight into one’s own deficits is often baffling to caregivers who are used to having honest conversations with their loved ones.”

Lack of insight may lead to denial, inflexibility, or irresponsibility. Care partners frustrated by a person’s lack of insight might confront or blame.  All of these can lead to conflict. (Find ways to handle anger, aggression and conflict here.)

Understanding the “why” of these behaviors helps us respond in caring and appropriate ways. Knowing what is happening in the brain can help us use the powerful tools of empathy and forgiveness—and remember not to take things personally.  Then Pat can approach her father and decisions that need to be made from a different perspective.  Sara’s family can learn how to coach her instead of blaming her for being “lazy” or “resistant.”

Remembering that the disease is talking helps us stay calm, warm, and supportive. George and Harriet called his disease Mr. AD.  When things became challenging, one or the other would often say “That’s Mr. AD interfering again.”

Changes in the brain are behind all of the changes and stages of dementia. We love the way George and Harriet let “Mr. AD” take the blame instead of each other. Our books Coping with Behavior Change in Dementia and Moving a Relative and Other Transitions in Dementia Care offer many more ways to cope with “Mr. AD”.

Beth Spencer and Laurie White

Dementia Care Books

 

Six ways to help your relative with dementia get dressed

six ways to help your relative with dementia get dressed

Six ways to help your relative with dementia get dressed

Getting dressed is a very personal and private activity. When people start to have difficulty with it, they often feel frustrated and embarrassed and are reluctant to accept help. Who wants to get dressed in front of someone else, or be dressed by another person? Struggles with caregivers like you can be common.

And dressing is a surprisingly complex task! Many steps and decisions are involved: deciding what to wear, selecting specific pieces of clothing, remembering the order of getting dressed—what to put on first, second, etc.—and coordinating the movements of our limbs with the clothing. And we have to be able to focus long enough to accomplish all these steps.

These are skills that dementia can diminish or take away altogether. As dementia progresses, a person may not be able to:

  • remember the last time she changed her clothes
  • identify items of clothing, confusing a jacket for a sweater
  • recognize or coordinate parts of the body
  • sequence the steps of getting dressed in the right order
  • know what is appropriate for weather conditions or social events
  • manage buttons and zippers
  • have the energy to get dressed or undressed

How can you help make getting dressed easier? Here are six strategies that we have seen work for families struggling with dressing challenges.

  1. Choose clothing that fits comfortably and is easy to take on and off. Look for:
    • garments with front closures. They are easier to reach and let your relative stay involved in getting dressed.
    • blouses and shirts with back closures for people in wheelchairs
    • sweat pants and other active wear that are easy to get on and off, warm, and easy to wash
    • skirts and pants with elastic waistbands
    • items with Velcro™ closures rather than buttons, snaps, zippers and belt buckles
    • “adaptive clothing” that looks normal but has been adapted for easier dressing – like shirts with hidden Velcro closures or pants with zippers down the legs.
  2. Organize closets and drawers. Take some time to:
    • label dresser drawers so your relative can find what he or she is looking for
    • limit the number of clothing items in drawers and closets to simplify the decision
    • remove rarely worn clothes and out of season clothes
    • assemble all articles of clothing and accessories that are to be worn together. Hang pants or skirt with matching shirt, sweater, underwear and any other accessories on one hanger.
    • buy several versions of your relative’s favorite item of clothing. Your relative can wear the same black pants and sweater every day—but you can wash them.
  3. Make sure the area where your relative gets dressed has adequate lighting, is clutter-free, and most of all, is warm! Older adults, especially those with dementia, may need a warmer room to feel comfortable.

When it’s time to help her get dressed, let her do all she can by herself. Being able to dress oneself, even partially, gives a person a sense of control, accomplishment and independence. These approaches will help:

  1. Follow your relative’s dressing routine as much as possible. How did she start her day in the past? Did she have breakfast before or after getting dressed?
  2. If your relative is able to choose what to wear, give her two choices. If she is not able to make a choice, have garments ready and within reach.
  3. Layer clothes on a bed in the order in which they will be put on. Put undergarments at the top of the pile, the second article (blouse, shirt, pants etc.) next, etc. Make sure all articles of clothing are right side out. Arranging clothes on a bedspread or blanket of a contrasting color may help a person see the articles of clothing better.

If you encounter problems, try using our Behavior Detective approach to get to the root of the situation. Keep a diary or log in order to pinpoint whether there are particular times of the day when your relative may be more interested and involved in getting dressed or undressed. Your relative may be more able and willing to change clothes when she is rested, or when she is following a long-held routine.

We hope these strategies can help you take the stress out of dressing. Even more suggestions can be found in our book, Coping with Behavior Change in Dementia: A Family Caregiver’s Guide. We also share strategies several times a week on our Facebook page. Maybe we’ll see you there!

Beth Spencer and Laurie White 

Visiting the dentist when your relative has memory loss

Memory loss and dementia can make dental care difficult. In the early stages of memory loss or dementia, most people continue to take care of their teeth and brush regularly. As dementia progresses, however, they may not remember to brush their teeth or recognize the importance of good oral hygiene. Eventually they may refuse to have someone put a toothbrush in their mouth or remove their dentures.

Good mouth health may be lost in this struggle. That’s unfortunate, because good mouth care is essential to healthy teeth, gums and overall health in elders. With healthy teeth and gums, eating is more enjoyable and tooth decay and loss are avoided. Without regular brushing, people are at risk of infections, chewing problems, weight loss and increased vulnerability to other health conditions.  Risks are especially high for people with chronic illnesses such as diabetes, or whose medications cause dry mouth, making it uncomfortable and sometimes painful to chew and swallow food.

A dental professional can be an important partner in keeping your relative’s mouth healthy.

Partner with a professional

While your relative’s dentist will be a familiar face, he or she may not be right for your relative. Although many dentists care for older adults, they may not be trained or experienced in providing dental care to people with dementia. Call some of the assisted living homes and nursing homes in your area and ask for the names of the dentists who see their residents with dementia. Your local dental society may also be able to furnish names of dentists who work with people with memory issues—who know, for example, that giving instructions one step at a time will help people who have difficulty processing a whole sequence. Dentists and dental hygienists who work with special needs children often are good with people with dementia.

It can help to develop a dental care plan for your relative shortly after the diagnosis of dementia. Make an appointment for a thorough check-up to identify any problems that need attention—gums, broken or missing teeth, infection, etc. Ask your dentist about how often your relative will need dental visits.

Especially if your relative is struggling with mouth care, schedule professional cleaning appointments as often as you can, for as long as you can. A dentist or dental hygienist is able to examine and clean teeth and gums in a way that you or your relative might not be able to.

Before the dental appointment

  • Notify the dentist ahead of time about your relative’s diagnosis to make sure the dentist is comfortable and qualified to care for your relative.
  • Tell the dentist if your relative is able to maintain her own dental care or if she needs reminders or assistance.
  • Report any concerns that you or your relative might have: pain, tooth decay, irritated gums, etc.
  • If your relative will be seeing a dental hygienist, ask about her experience with patients who have dementia.
  • Listening to calming and favorite music may help your relative relax during a dental examination. Some dental offices will provide an ipod® and ear buds for patients who are nervous or tense during examinations. If not, ask if you can bring one. If your relative needs assistance turning the device on, ask whether the office staff can help or you need to do this before the dentist starts the examination or procedure.
  • If dry mouth is a concern, give the dentist a complete list of medications and ask if any could be causing dry mouth. Ask for products that can help relieve symptoms.
  • Tell the dentist about any dementia-related symptoms that might occur during the appointment: inability to report symptoms or locate pain, restlessness, inability to follow instructions or answer questions, etc.
  • Ask the dentist about the expected length of the appointment. If you are concerned that your relative might be unable to sit in the dental chair for the required length of time, ask if the needed procedure can be completed in two appointments. Some dentists may suggest a mild sedative for patients with dementia when a lengthy or invasive dental procedure is necessary. Consult your relative’s primary care doctor about the dentist’s recommendation.

On the day of the appointment

  • Avoid possible wait time by calling ahead and asking if the dentist is on time.
  • Consider how long in advance to tell your relative about the dental appointment. If you think advance notice will cause her to be anxious, consider telling her the day before or the day of the appointment.
  • Ask the dentist if you can stay in the examination room during the procedure if you think your presence will help calm your relative.
  • After the appointment, praise your relative for a job well done. Prepare for your relative – and you – to be tired, as it is likely a great deal of energy went into preparing for and getting through the appointment. If possible, try to plan the rest of the day to be quiet.

Grace began to notice that her husband Otto was not brushing his teeth regularly. One day he began rubbing his jaw and wouldn’t eat. Grace looked in his mouth and saw that his gums were swollen and red. She was worried about getting him to the dentist and how he would do once he was there. She called the dentist, explained the situation and told the dentist that Otto had Alzheimer’s disease. She cautioned that Otto might not be cooperative. Otto did quite well during the abbreviated appointment. Grace felt that the dentist was more comfortable because of the background information she gave him.

More information on oral hygiene and strategies to try to keep your relative’s teeth and gums healthy can be found in our book, Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, available at dementiacarebooks.com.

Beth Spencer and Laurie White

5 ways to care for a relative with memory loss at home

5 ways care relative memory loss home

Caring for a relative with memory loss can be both challenging and rewarding.

Relatives who stay home can live in a familiar environment while staying engaged in existing family and social networks. But providing 24-hour care can be exhausting, expensive, and sometimes impossible. How can you extend your relative’s ability to stay home—and your ability to manage?

#1: Rely on your network

Your support network matters. In our consulting practices, we have seen that people with large extended families or friendship networks that are available to help are more likely to be able to sustain the person at home longer. Many of us are uncomfortable accepting care, but family and friends often want to help and are not sure how to do so.  Giving them specific tasks and roles can make your job easier and allow them to feel helpful.

#2: Create a calm, uncluttered environment

A calm, consistent environment prevents agitation. Declutter the environment, especially in areas where your relative bathes or eats or spends a lot of time. While you don’t want to make the environment sterile, you do want to simplify it. Reduce loud noises and potential agitators like violent or upsetting tv shows.

#3: Prevent boredom

Filling time is difficult for people with memory loss. Not knowing what to do or how to fill time can cause anxiety or depression and eventually agitation. You know what he or she has enjoyed in the past – birdwatching, model trains, knitting. Not all of these things may be possible, but you can find books or videos about these subjects, or start a conversation on a favorite topic.

Finding activities for your relative also can be very challenging.  This list of 101 activity ideas from the Alzheimer’s Association might be helpful.

Sitting for 4 or 5 hours at a time without getting up can lead to stiffness, which can lead to agitation or irritability. Be sure your relative gets out of a chair or wheelchair and moves around regularly. Research shows that a 1-hour walk three times a week can improve thinking skills in people with vascular dementia. There’s nothing to lose by trying!

#4: Observe and reflect

Anxiety, aggression and anger are easier to prevent than defuse. When things go south, start looking for triggers. What caused the situation? How did it escalate? When is your relative in a good mood and cooperative? Use a behavior log to help you track and reflect on the possible causes of behaviors that are challenging so you can understand and try to prevent them. We believe that many of the most challenging behaviors may be minimized when caregivers learn how to identify root causes and try strategies that are known to help some people with dementia much of the time. Our book Coping with Behavior Change in Dementia: A Family Caregiver’s Guide offers many ways to avoid agitation during meals, bathing, going to the bathroom or when your relative is bored or upset.

#5: Find and use respite services

In our experience, the families that have the greatest success maintaining relatives at home rely on a combination of family care and respite services. Yes, a family member helps provide or supervise care—with extra assistance from an adult day program, a home caregiver, or a respite care program.

An adult day care program specializing in people with memory loss gives the caregiver time alone at home and offers socialization and stimulation for the relative with memory loss.  Some include medical services as a key component, while others are “social models” that emphasize stimulation and socialization. The National Adult Day Services Association can help you find and evaluate local programs.

Having a home companion shoulder a few hours of care a week means you can enjoy free time away from home or do those errands you never get to. It also helps your relative get used to other people providing care and companionship—which can smooth an eventual transition to residential care, when needed. Options for home care range from national chains like Home Instead to local organizations and even individuals who work as private caregivers.

24-hour residential respite care may be offered for a few days up to a month by assisted living communities, small group homes, and skilled nursing homes. We’ve seen families use this option when they are exhausted, when there is a family emergency or out-of-town event, or as a way to test out how their relative does in residential care. This too can ease the way to a permanent move to residential care, if needed, for both the caregiver and the person with memory loss.

Beth Spencer and Laurie White

Helping a relative with memory loss with bathing

helping relative memory loss bathing

Bathing is often the first personal care task that a person with dementia needs help with.

Bathing is often the first personal care task that a person with memory loss needs help with. But helping a relative with memory loss to bathe can be touchy, difficult, and easily lead to aggressive, angry behavior. And why not, when someone needs help with a task he or she has done independently for decades? The loss of privacy and dignity is just one of many triggers that can make bathing very difficult.

That’s why we shared our chapter, “Why won’t she take a bath? Helping your relative with memory loss with bathing”on our website. This blog offers some tips to get you started thinking about bathing. Much more can be found in the online chapter and in our book, Coping with Behavior Change in Dementia: A Family Caregiver’s Guide.

What’s the problem?

To start, approach the bathing problem by putting on your behavior detective hat. Ask yourself questions about the possible physical, cognitive, medical and emotional causes of your relative’s bathing problems:

  • She may have forgotten when she took her last bath.
  • She may be in pain: joint pain, for example, can make it difficult to get to the bathroom, and in and out of the shower.
  • She may be tired: not sleeping well, or asked to bathe when she is tired.
  • She may be depressed: often people who are depressed do not see the need to take a bath or may not have the energy to take a shower.
  • She may be afraid of falling, or getting in and out of the bath or shower.
  • She may be asked to bathe at a time that is not familiar to her.
  • Water might not feel good on her skin; having water come over her head and face may be frightening.
  • She may not remember how to do all the steps in bathing: wet the washcloth, put soap on the washcloth, etc.

“Why won’t she take a bath? Helping your relative with memory loss with bathing” offers strategies for each of these situations.

Talking about bathing

  • Watch your tone of voice. In particular, avoid sounding bossy! Without meaning to, care partners often sound bossy, especially when they are tired or frustrated. This tends to breed resentment and resistance to being told what to do.
  • Think about how you are going to approach this conversation ahead of time. How can you use a hook or reward? Can you mention an upcoming visit, a trip to church or synagogue, or a dish of ice cream afterwards?
  • During the bath, explain things clearly. If your relative doesn’t understand what is going on, it may increase her fear or anxiety. You may need to give step-by-step instructions.
  • If the answer is “no”, ask your relative why she doesn’t like to bathe. If she is upset, in pain, or fearful, she may be able to tell you the reason herself.

Strategies for ensuring privacy

  • Try to give your relative as much control as possible over the decision and the process. Instead of asking, “would you like to take your bath now?” try, “would you like your bath now, before you get dressed, or tonight before bed?”
  • Try to schedule bathing at the same time she is used to —but pay attention to fatigue levels. If she has always bathed at night but is now exhausted or more confused by early evening, you might try a different time of day.
  • Drape a towel over your relative’s shoulders or lap. Some families have the person shower in her underwear or bathing suit to protect modesty.

Pay attention to the environment

  • Try to make the bathroom as comfortable, warm and inviting as possible before the bath begins.
  • Use non-slip washable bathmats inside and outside of the tub or shower.
  • Use towels and other bathing supplies with colors that contrast with the bathing area. A white bathtub, white washcloth and white bar of soap may all blend in together, making it hard for your relative to locate the washcloth and soap.

Putting it all together

Joan McCay hated having anyone assist her with bathing and became quite angry whenever it was attempted. Her daughter Alice began to think about the whole bathing experience from “setting the stage” for a bath to sharing a pleasant experience with her mother after the bath was finished. She decided to try a new approach. First, Alice got the bathroom ready and turned on the heater. Then she and her mother looked at a favorite photo album together. Next Alice said, “Mom, the shower is ready. Let me help you off with your shirt and give you a hand into the shower so you don’t slip.” Joan started to get angry and Alice replied, “Mom, John is coming to visit later and I know you want to look nice. I’ll help you.” After she had her mom seated in the shower, Alice used the handheld sprayer to help her get the water the right temperature. Then she put a towel around her shoulders, gave her mother the washcloth and had her wash while Alice held the sprayer the way her mother wanted it. When Joan was dressed again, Alice had a snack waiting for her. Although there were some tense moments, the bathing process went smoothly. Alice practiced remaining calm and ignoring angry outbursts.

If your relative particularly dislikes receiving help from a family member, consider hiring a home health aide to assist with bathing. If you do, you might want to have the aide help with other things as well, such as changing beds or laundry. You might not want to introduce bathing until your relative has established a relationship with the aide.

Beth Spencer and Laurie White

 

My mother refuses to take her medications. What should I do?

Refuses to take medicationPeople with memory loss often refuse medications for many different reasons.  A place to start is by trying to figure out why your mom is refusing to take them.

 

 

Possible reasons might include:

  • She doesn’t understand why she needs to take them.
  • She is afraid they might hurt her.
  • Saying ‘no’ is a way to have some control of her life.
  • She has never liked taking medicine.
  • She doesn’t trust the person who is giving them to her.
  • She is having trouble swallowing them.
  • The medications don’t taste good.
  • There are too many medications.

What can you try?

You can see that your approach to this is going to depend, to some extent, on why she is refusing to take them.  Sometimes a simple reminder of what the medicine is for is all that is needed. “Mom, Dr. Jones says this pill is what is keeping your heart beating regularly.  He wants you to take them.”

If it is a control issue, think about ways to give her a little more control: “Would you like your medicine now or after breakfast?” If this is where she is taking a stand, can you make it more casual and less of a power struggle? “Mom, your pills are in the cup on the counter when you are ready for them.” Sometimes putting the medications in a cup near her meal is a good reminder that she needs to take her pills. Keep in mind if she has to take her pills before, after or with food.

If she is afraid or a little bit paranoid, you will need a different approach.  Use the Behavior Detective Approach to pinpoint the times of day when she is most likely to be agreeable and try to give them to her then. You might need to back off and try again later.

Other things to think about:

  • Does she need all the medicine she is taking? Can it be simplified? Are the pills prescribed for multiple times of the day? If so, you might want to talk to the doctor or pharmacist to see whether it’s possible to take them once a day or in a different form. The doctor for one elderly woman with dementia dropped her cholesterol medication, her vitamin and her calcium because she was overwhelmed by the number of pills and refusing to take them. He felt these were the least important in the long run, unlike her blood pressure pills.
  • Ask the pharmacist if the medication comes in a different form. A liquid or patch might be easier than a pill, if available.
  • Can the pill be taken with food or crushed in pudding or ice cream? Sometimes it can be hidden or disguised if it’s something the person really needs but refuses to take.
  • Is this becoming a battleground between you? Is your body language and frustration adding to the problem?

While our book Coping with Behavior Change in Dementia: A Family Caregiver’s Guide offers many strategies for addressing challenging behaviors like this, sometimes there is no good solution.  All you can do, as your mother’s caregiver, is your best.

Beth White and Laurie Spencer