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respite care can be lifesaving for caregivers

respite care can be lifesaving for caregiversCaregivers need breaks. Respite care can happen many different ways. You might get a break by hiring a home care worker. Perhaps other family members can step up and rotate time with your relative. Taking advantage of adult day programs or temporary stays in a residential setting is another possibility.

All of these possibilities rest on getting your relative to agree to new people, routines, and places. Without agreement, you won’t get that break.

It’s not uncommon for people with dementia to refuse help of any kind. The secret to getting someone to accept help is to understand and address common and possible reasons for not accepting help. For example:

“She’s just stubborn.” This common statement usually indicates that the person with dementia is used to being in control of her own life and is still trying to be independent.

“I can take care of myself.” This sounds like denial, but has more to do with changes in the brain that result in the person not understanding things accurately such as how much assistance she needs.

“I don’t need any help.” When people develop cognitive changes, they may feel humiliated. Admitting that one needs help can be a very hard thing to accept for both the person with dementia and their care partners—especially after decades of independent living.

“When somebody helps me, I feel useless.” Feeling useless or worthless can lead to shame and make people very resistant to accepting help.

“I’m saving money for a rainy day.” For older people who have spent their whole lives saving money and being thrifty, the idea of spending money on help, especially when they think they don’t need it, may be very difficult to accept.  The idea of a sliding scale or “charity care” makes them feel uncomfortable.

“I don’t want strangers in my home or knowing my business,” or “I don’t trust anyone to come in my home.” Inviting strangers into one’s home is a big step, especially for people with a strong desire for privacy. Sometimes day programs are a better solution for that reason.

Are you the problem?

Ask yourself, are you the one getting in the way of accepting help? As family members we may have some of the same feelings and hesitations as our relatives with memory loss. Discussing this with a professional can help you sort out your emotional issues and decide how to proceed.

How to get help even when your relative refuses it

Arranging respite care by bringing help into the home for the first time can be very troubling to the person with dementia. She may feel insulted, humiliated or angry or a combination of these feelings. Here are ways to make the process easier:

Look for a familiar person to step in to help—a neighbor, friend, housekeeper or gardener who can become a part-time companion. This can happen gradually and subtly and your relative may not notice the change in role. The person with dementia may not know they are being paid.

Present the change as helpful for you rather than your relative. Bringing someone into the house IS help for you. Respite care gives you some peace of mind and may relieve you of some of your responsibilities. Mary’s mom Karen lived with her and her husband. For many months Karen was fine staying alone while Mary was at work. However, Mary began to get anxious phone calls from her mother. Sometimes when she got home her mother would say, “Where have you been? I’ve been so worried!” Mary took this as a sign that Karen needed someone with her and hired a home care agency a few hours a day.

She told her mother, “Amanda will be coming in a few hours while I’m at work. She’ll be helping me with laundry, cleaning, shopping and cooking, but she’s available to hang out with you if you want company. You don’t have to interact with her though if you don’t want to. She’s coming to help me.” Initially Mary made sure she was at home when Amanda came and made sure that Amanda understood the plan. Karen accepted help on these terms and eventually enjoyed doing things with Amanda. After several months she also allowed Amanda to help her with bathing.

Give her as much control as possible.  When people feel like they are losing control of their lives, they often dig their heels in.  Think about how to help her feel she has some control:

  • Offer choices whenever possible.
  • Involve her in the interviewing and decision of hiring home care.
  • Make it feel like she is helping you. She is!

Beth Spencer and Laurie White

Authors of Moving a Relative and Other Transitions in Dementia Care and Coping with Behavior Changes in Dementia

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 

red flags that indicate your relative with memory loss shouldn't be aloneWhen should your relative with dementia no longer be left alone?  There are no easy answers, and the signs are not always clear.

Many people with earlier-stage dementia can manage well in their homes with little or no support. As time passes, and dementia affects judgment and decision-making , they will need more support and assistance to keep them safe. Eventually your relative will not be safe alone.

It’s vital to continually assess safety risks.  Consider the following as you make decisions about the safety of your relative. In our experience, these eight red flags can help you determine when your relative may not be safe alone anymore.

Red flag #1: Handling alcohol.  It is imperative to monitor alcohol. People with memory loss may not be able to accurately monitor how much they drink.  Alcohol can also increase the risk of falling. On the other hand, a cocktail or glass of wine with dinner may be a longstanding habit that brings pleasure to your relative.

  •  You may want to ask your relative’s physician about the appropriate amount of alcohol that is safe.

Red flag #2: Managing medications.  As memory and judgment gradually worsen, taking medications accurately can become difficult and eventually impossible for people with dementia.

  • Ask her doctor if her medications can be simplified.  Can some be eliminated? Or changed to once a day? If swallowing pills becomes difficult, are any of the medications available in a different form? A patch or a liquid may be easier.
  • For people with mild dementia, an automated medication dispenser may be effective.
  • Avoid conflict by giving her as much control as possible. Ask questions like,“Would you like your medicine now or after breakfast?”

Red flag #3: Misusing household toxins.  Pay attention to household cleaners that could be used inappropriately. When Mr. Carter washed his hair with mouthwash, his daughter realized that he no longer understood what the various bottles around the house were.

  • If you see your relative becoming mixed up about bottles, cleansers, etc., sort them out and lock up anything toxic, e.g., paint thinner, bleach, counter top cleansers, dishwashing soap. 

Red flag #4: Smoking.  Does your relative smoke or leave burning cigarettes unattended?  This can occur when someone has memory loss or becomes confused.  If the person has a progressive dementia, unsupervised smoking can become a dangerous problem. Working on ways to decrease or end the smoking habit will become important.  It’s not uncommon for people to forget about smoking as their dementia progresses.

  • Nicotine gum or patches sometimes help some people stop craving cigarettes. At some point, locking up matches and lighters will become important. 

Red flag #5: Leaving the stove on. This can become dangerous when people are regularly burning up tea kettles or pans.  However, many of us do this occasionally, so it should be interpreted cautiously.

  • Try purchasing an automatic shut-off electric tea kettle, disabling the stove by removing knobs or turning off circuits, or having an electrician install automatic shut-off timers on stoves and ovens.  Many people with dementia can safely handle a simple microwave for a period of time when stoves have become dangerous.

Red flag #6: Unsafe room or water temperatures. Because skin becomes thinner with age, older adults often feel colder than we do and try to warm up the house by turning the heat up too high or turning the air off.  This can put a person at risk for dehydration, especially if she is not drinking enough liquids.

  • Programming the thermostat – day and night – to a temperature that is comfortable for your relative may prevent her from wanting to adjust the temperature too high. Or consider making the thermostat inaccessible by encasing it in a locked plastic case.
  • Setting the hot water heater to 120 degrees is safer on a person’s fragile skin and can prevent burns. 

Red flag #7: Falling repeatedly. Falling makes safety when left alone a problem. In the early stages of dementia, the person may be able to use a cell phone or an emergency response system to call for help, but as the disease progresses she may not be able to remember how to use it.  Some newer systems have fall detection built in.

  • Make sure that tripping hazards have been removed.
  • Clear pathways of clutter; remove area rugs; increase lighting to help your relative see and negotiate pathways and hallways.  
  • Make sure all stairways have good, solid railings. 
  • Check your relative’s shoes for stability, comfort and non-slip soles. 
  • An occupational therapist or geriatric care manager can help do a home safety evaluation.

Red flag #8: Attempting former hobbies.  Some hobbies – hunting, woodworking, cooking, sewing, mowing the lawn, for example – may involve appliances or devices that are potentially very dangerous. Closely monitoring the person’s ability to handle equipment safely becomes very important.  At the same time, we want the person with dementia to be able to continue to enjoy hobbies as long as possible as this is part of what makes life meaningful.

  • Some families find ways to work on hobbies together for a period of time.  Jane began doing woodworking projects with her father since he no longer seemed to be safely able to operate his power equipment. 
  • Sometimes it becomes important to remove tools or appliances from the person’s home or to keep them under lock and key.
  • Guns and ammunition should be locked up. When judgment is impaired, they become a real hazard.  With supervision, gun enthusiasts may still be able to use them safely for a period of time, but the risks will increase as dementia progresses. 

It’s hard to strike the right balance between being over-protective and ignoring signs that your relative is at increased risk.  And, of course, family members don’t always agree about how much risk is tolerable.  It can be helpful for families to talk occasionally together and assess how their relative is doing with each of these potential safety issues.

If you see lots of red flags, it may be time to consider relocating your relative with memory loss to residential care. Our book  Moving a Relative and Other Transitions in Dementia Care can walk you through the process.

Beth Spencer and Laurie White

 

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