Being a caregiver for a loved one suffering from Alzheimer’s disease poses many challenges, but it can also be very rewarding to know you’re being helpful and offering comfort. How you handle your role in providing care and support is an important part of making the journey through Alzheimer’s as easy as possible for you and your loved one.
Start with the basics of relationship, pain management, and self-care to lay the foundation for a positive experience.
Do’s and Don’ts of Being an Alzheimer’s Caregiver
How you relate to a loved one with Alzheimer’s changes as the condition progresses. Your interactions won’t be the same as they once were and being a caregiver for someone with this disease requires patience and a measure of diplomacy. As such, here are six guidelines for keeping the peace even on tough days.
Do Communicate Openly
Let your loved one know you’re there when he or she has a problem or wants to talk. Be active as you listen, using nonverbal communication like nodding and smiling to acknowledge what’s being said. Follow wherever his or her train of thought leads, whether it’s to an event from a few hours ago or far into the past. Consider connecting in other ways besides talking, such as playing an old favorite record or cooking a meal he or she enjoyed as a child.
Do Focus on Kindness
Personality changes are common with Alzheimer’s and can be drastic. Your loved one may become short-tempered or even violent at times. You may find yourself on the receiving end of undeserved accusations or insults. When this happens, remember it’s not your loved one’s fault. Respond with kindness and compassion, using a calm tone to provide reassurance and prevent the situation from escalating.
Do Be Patient
When your loved one tells you the same story multiple times during a single conversation or forgets something you just explained, take a deep breath and be patient. These are normal aspects of Alzheimer’s and aren’t under your loved one’s control.
If frustration arises as you attempt to clarify something you said, drop the subject until you’ve both had a chance to calm down.
Don’t Be Critical
Because Alzheimer’s primarily affects memory, there will be times when your loved one fails to recall an event as it actually happened. However, attempting to correct the error can make him or her confused or upset.
Going with the flow, even if an inaccurate memory misrepresents or puts blame on you, is a better strategy and makes it easier to keep the peace.
Don’t Get into Arguments
Arguing with your loved one adds unnecessary stress to an already difficult situation. Refrain from expressing disappointment when he or she forgets something you feel is important or can’t understand what you’re trying to say. Remind yourself the disease makes logical reasoning difficult and return to the “do” of practicing kindness when you feel like you’re losing your temper.
Don’t Restrict Activities
Maintaining independence is important for an elderly loved one as Alzheimer’s progresses. Allow him or her to continue doing everything he or she has the capacity to do safely. Be encouraging and supportive, offering help only when needed instead of assuming you have to do everything yourself. Even performing simple activities like folding laundry or putting away groceries can help your loved one feel useful.
Options for Alzheimer’s Pain Relief
Aging relatives are often already taking at least one medication, and doctors may prescribe more to help with Alzheimer’s symptoms and other related conditions. It’s important to keep a list of these medications, the dosage, and any special timing instructions to prevent mix-ups and ensure no doses are missed.
This information is also useful when making decisions regarding pain management. Although people with Alzheimer’s may no longer have the skills or ability to verbalize it, they feel pain to the same degree as anyone else. Signs your loved one is in pain may include:
- Facial expressions, such as grimacing or wincing
- Changes in behavior
- Unusual yelling or shouting
- Trouble sleeping or changes in sleep patterns
Keep track of these symptoms and talk with your loved one’s doctor to determine the best course of treatment. The kind of medications used to address pain in Alzheimer’s patients depends on the type and severity of the pain, other medications they’re taking, and any other risks related to metabolic changes experienced with aging.
The most common over-the-counter pain medication for those with Alzheimer’s is acetaminophen. NSAIDs are generally avoided due to an increased risk of gastrointestinal bleeding in the elderly. Topical analgesics in the form of balms or creams may also be beneficial.
Prescription painkillers, including opioids, are sometimes recommended. However, side effects can be unpleasant and include an increased risk of cognitive impairment, so alternatives such as corticosteroids may be used. Adjuvant analgesics like SNRIs and anticonvulsants, although not specifically made for pain, can provide additional support.
Take Care of Yourself
According to a poll conducted by the University of Michigan, 78 percent of those caring for loved ones with dementia say the experience is “very stressful.” This comes as no surprise when you consider the significant lifestyle changes involved in becoming a full-time caregiver. Normal activities, such as paying bills, taking care of your kids, spending time with your spouse, and even grocery shopping, can fall by the wayside, leaving you feeling overwhelmed and burned out.
Because of this, self-care is one of the most important responsibilities a caretaker has. If you’re starting to feel overwhelmed:
- Take a mental step back from the situation to remind yourself you can’t do everything
- Identify your personal limits and respect them
- Seek help from people in your support group, such as other family members, friends, or your church congregation
- Make sure you’re eating well
- Establish a sleep schedule providing seven to eight hours every night
- Take time for regular exercise
- Schedule time off from performing caretaker’s duties
- Begin to practice stress reduction methods, such as prayer, deep breathing, and gentle stretching or yoga
- Reduce the other sources of stress in your life
- Rediscover hobbies you find enjoyable and relaxing
To reach this place of balance, it may be necessary to hire in-home help from a qualified caretaker or health aide or consider a memory care facility for your loved one. These options are suitable for temporary respite care to give yourself a break or as long-term care solutions to provide care for your loved one without sacrificing your own health.
Making the transition from a familiar lifestyle to being a caregiver for a loved one with Alzheimer’s is a big change and can feel overwhelming at times, especially as disease symptoms progress. However, about 85 percent of caregivers say the role is rewarding despite the challenges.
So, embrace this season of your life and enjoy the time you have with your loved one. Even though he or she won’t remember everything you do to provide care, your efforts matter and will bring comfort during this difficult journey.