When faced with the reality that your elderly loved one has been diagnosed with a form of dementia, such as Alzheimer's, it can be challenging to understand and know the right things to say, to do, and even to feel.
Caring for someone with dementia can range from assisting with simple daily tasks to providing personal care. With these tasks comes responsibility, frustration, insecurity, and fear. What you are feeling is normal. There are several articles and resources to explain what dementia and Alzheimer's are (here is a link to our recent blog on the topic). However, it can be a challenge to find information and support for the caregivers who assist and manage daily tasks for their loved ones and how to cope with the progression of the disease and its effects on the individual.
When caring for an individual with dementia, it is always best to expect the unexpected. Your best efforts in planning, scheduling and preparing activities, meals, and outings are commendable but expect them to change. Scheduling and being organized are essential when you must gather items, make appointments, and know what you want to happen, but understand that those plans may change, and your ability to adjust and be flexible is crucial to reducing stress and frustration. Always have an alternative method when things don't go as expected. This is especially important when your loved one or person in your care has become increasingly dependent on you.
As you continue to develop routines and adjust expectations, and the more your loved one becomes dependent on your care, frustrations will arise. Remain calm and step back. Remember, there is more to the disappointment than what is on the surface level. They may struggle to understand your direction when challenged with limited cognitive abilities. Is it necessary to continue to push your expectations/routine? Is it helpful? What does the individual need at that moment? Why might they be doing or saying these things?
Take Your Time
One way to reduce frustrations with tasks and activities is to anticipate that some tasks that were once easy and routine may take longer than expected. Allow for more breaks during activities. Involve them in the planning or have them participate in the task with little assistance (but a watchful eye!). Provide choices - but not too many! You want to be flexible and allow for a level of independence but not offer so many choices that it becomes confusing or frustrating for them to decide.
Keep It Simple
Whether it's choosing what clothes to wear for the day, arranging a bathing routine, or deciding on what to make for dinner, consider providing simple instructions and allow for a reasonable amount of time between each step. This will allow them to feel in control and calm and reduce any anxiety.
Reduce Distraction & Napping
Oftentimes, frustration and irritability are caused by tiredness and distraction. Limit napping, turn off the tv, or be seated in a quiet and less crowded area for activities and meals. While napping can be beneficial to many of us, often it may cause confusion, the onset of sundowning, and agitation when trying to concentrate on a task.
Respond (Don't React)
According to leading dementia care and education specialist Teepa Snow, "Stop reacting and stop your behaviour of trying to correct them." When things or conversations don't go as planned, your initial reaction may be to become angry or frustrated that they didn't act or react the way you wanted. This is normal but not helpful. Reacting to a difficult situation can actually hinder progress. Refrain from pointing out their mistakes or errors. Don't try to fix things when they go wrong and stop trying to argue with them. Instead, use what Teepa Snow describes as "reflective narrative language". The reflective narrative language will support their ability to make connections.
Repeat back to them what they have said to you—acknowledge and validate what they are feeling. It is not helpful to focus on who is right or wrong, but it is often helpful to apologize (for whatever happened). Say something like, “I’m sorry this happened,” or, “I’m sorry I upset you, I was trying to help.”
Create a Safe Environment
The progression of dementia impairs judgment and problem-solving skills. These impairments may increase a person's risk of injuring themselves or others. Ensure the home is safe by reducing clutter, minimizing large bulky furniture that may make mobility difficult, preventing falls by avoiding area rugs and installing handrails or grab bars in critical areas. For items such as medication or cleaning solvents, consider locking them in a cupboard or closet, as they may pose dangers. Always check fire alarms and smoke/carbon monoxide detectors are in good working order and keep matches or lighters out of reach to prevent accidental fire.
As a caregiver, your role can be demanding on your time and your energy. It is important to practice self-care on a daily basis to prevent burnout, manage anger or frustration, and ensure that your own health is taken care of. Taking a break or stepping away when a situation has escalated and becomes challenging is important to ensure your peace of mind and de-escalate the level of frustration and anger. Take deep breaths to neutralize your thoughts and feelings, lower your stress, and help you gain perspective to focus more on solving the problem. Consider journaling, joining support groups, or speaking with a trusted friend, family member or clergy about your concerns and seek advice from those who may have experienced what you are experiencing.
Do not hesitate to ask for help. This can be from your own loved ones, close friends, or agencies like ours. Ideal Caregivers 4u is here to help provide respite care for those moments when it becomes too difficult to take on alone. We provide meal assistance, companionship, personal care, and a variety of additional services so that you can have peace of mind knowing that you are not alone. You are supported by our trained professional caregivers and team members to guide you in this journey. Contact us today for more information.
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