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"Doctors diagnose, nurses heal, and caregiversmake sense of it all" - Brett H. Lewis
Alzheimer's disease creates major stress in families. Work through family conflicts together so that you can move on to more important things.When a family member is diagnosed with Alzheimer's disease, the effects on the family can be overwhelming.
The reality that someone you love has such a devastating illness can trigger a range of emotions — including fear, sadness, confusion and anger. Conflicts are common as family members struggle to deal with the situation. To minimize these conflicts, address the issues together.
"Alzheimer's disease affected my family in many ways, negative and positive. We as a family will forever feel its impact for the rest of our lives"
Share responsibility
Iindividual family members will deal with stress and the diagnosis differently. Consider each family member's preferences, strengths, resources and abilities. Some family members may provide hands-on care — either in their own homes or in your loved one's home. Others may be more comfortable with respite care, household chores or errands. Others may be better suited for handling financial or legal issues.
Meet regularly
Plan regular face-to-face family meetings. Include everyone who's part of the caregiving team, including family friends and other close contacts. Discuss each person's caregiving responsibilities and challenges — and make changes as needed. If time, distance or other logistical problems are issues for certain family members, consider conference calls or video conferencing. You can also share email updates with the entire family or start a family blog.
If your family meetings tend to turn into arguments, consider asking a counselor, social worker or other professional to moderate.
Be honest
Talking about your feelings in an open, constructive manner can help defuse tension. If you're feeling stressed or overwhelmed, say so — then work together to brainstorm more effective ways to share the burden of your loved one's care.
Be careful to express your feelings without blaming or shaming anyone else. Use "I" statements, such as "I'm having trouble juggling my own schedule with all of Dad's appointments." Keep an open mind as you listen to other family members share their thoughts and feelings.
Don't criticize
There are many "right" ways to provide care. Respect each caregiver's abilities, style and values. Be especially supportive of family members responsible for daily, hands-on care.
Consider counseling
If you're concerned that the stress of Alzheimer's will tear your family apart, seek help. Consider joining a support group for Alzheimer's caregivers or seeking family counseling. Remember, working through conflicts together can help you move on to more important things — caring for your loved one and enjoying your time together as much as possible.
It’s common for people living with Alzheimer’s disease to experience increased confusion, anxiety, agitation, pacing and disorientation beginning at dusk and continuing throughout the night. Commonly referred to as “sundowning,” this syndrome can disrupt the body's sleep-wake cycle, causing more behavioral problems late in the day.
"SUNDOWNING" is a state of increased agitation, activity and negative behaviors which happen late in the day through the evening hours. It used to be thought that sundowning was caused by the lowering light and shorter days. However, research now indicates that being overly tired may have more to do with sundowning.
Here are some suggestions on how to minimize the negative behaviors associated with sundowning:
Make sure that your Loved One is well-rested - Easier said then done. It does help though if you can get your someone to take a nap just before their normal period of sundowning. If they can not or will not nap, an hour quiet time (reduced stimulation and activity) will work.
Limit outings and activities to the morning hours - Generally the individual with Alzheimer’s Disease is better able to tolerate outings, activities and increased stimulus during the earlier part of the day. Plan your trips to the stores, involvement with kids, visits to day care and so forth during the earlier part of the day. This should be followed with a time of decreased stimulus and quiet time to wind down and relax.
Decrease the length and amount of stimulus - Even during the earlier part of the day the individual with Alzheimer’s Disease can only tolerate so much stimulation and commotion. Take steps to eliminate over-stimulation such as television, children, any noise making item, quick movements and many things going on at one time. Sometimes excessive stimulation can not be avoided. When that happens, find or try to have a quiet area for your loved one to retreat to.
Identify and minimize physical discomfort - Other types of physical discomfort can also play a part in sundowning. Hunger, being wet or soiled, feeling cold/hot and other sources of discomfort can increase agitation, especially in the late afternoon and early evening. Light snacking during the day can be helpful. Apples and other fruits can help replace lost energy. Even if your Loved One is pacing back and forth, that does not mean they have an endless supply of energy. Make sure that personal needs are attended to and that the climate is at a comfortable level.
Identify and treat medical ailments - Many ailments can contribute to sundowning and agitation. Arthritis can be one of the most common causes. Urinary Tract Infections(UTI), flus/colds, asthma, allergies and other conditions are all medical ailments that can contribute to sundowning. It is always a good idea that at first signs of exhibiting sundowning or when sundowning becomes common to take them to the doctor..
Be observant to possible causes - Many times there are triggers to agitation leading to sundowning. Strangely enough in one case Mirrors became a trigger. Watching to see what is going on, what events are happening and who is present prior to sundowning can help reveal some causes (and solutions). Sometimes no matter what we do sundowning will happen. If we can not prevent it we can help lessen it or at least make it less unpleasant.
Provide a private "time out" space - develop spaces or a room that can be unofficially off-limits areas to everyone but the caregiver and the sufferer.. This provides an retreat if things became too much so it becomes a natural private area. There were times when both the caregiver and the sufferer need some space to get away.
Clear the house - There are times that nothing we do eases the most aggressive sundowning episodes. Sometimes suggesting everyone goes to a movie or to some outing, turning off unneeded lights, TV/radios and going to a quiet corner or sitting outsidewas the best option. Always make sure the house is safe and always have someone close by. Sometimes, changing clothes and re-entering the general living area where the sufferer is can change the environment enough to make them relax. We found that if there was raised voices having a third party come into the room subdued my mother enough because she was a private person and didnt want to be seen in that frame of mind by others.
Check with the doctor - If sundowning is particularly troublesome, you may need some extra help with prescription medication. Talk with the doctor to let him know of the behaviors, time of day and how your Loved One is behaving before sundowning. Medication is a last resort and may take several attempts with different drugs and doses to find the right one that will work. If the medication does not help, do not become discouraged, relay the information to the doctor and he may either adjust the dosing or change the medication. Always ask the doctor to start with the smallest dose possible. Medication is only meant to take the "edge" off the behavior, it is not meant to make the person dopey or groggy, though some medications may make your Loved One sleepy the first few days.
Keep things simple - Keep the surroundings as simple as possible. Be sure walking paths are clear from clutter and obstacles. Low furniture such as coffee tables and foot stools can make it difficult and become a source of frustration. Keep knickknacks to a minimum and the tops of tables, television shelves and other surfaces as clear as possible. Mirrors and pictures can often become unfriendly visitors that the individual with Alzheimer’s Disease can not understand. Complicated, noisy appliances are also frustrating to them. Avoid changing things once you have things simplified. Changes of any kind are extremely frustrating.
OUR STORY
A Family Reflection And A Promise Kept
THE CAREGIVER ROLE
What is a Caregiver
The Caregiver Defined
Who Do Caregivers Care For
Accepting the Reality of Dementia
6 Steps to Successful Caregiving
Caregiver's Are Not Alone
Asking For & Getting Help
The Caregiver Code
Rights of a Caregiver
General Suggestions
Unmet Needs Of A Caregiver
Caregiver And Work
Feelings And Caregiver Stress
Questions & Answers
Notable People
STRESS, COPING & FEELINGS
The Caregiver Code
Rights of The Caregiver
Coping With Stress
Feelings And Caregiver Stress
Stages Of Alzheimer's
Helping Children Understand
Caregiver Burnout
Protecting Yourself From Burnout
Making Time For Reflection
Moving On
How is Competency Defined?
Power of Attorney
What is an Advanced Directive?
Do I Really Need a Will or a Trust?
COMMUNICATION
Importance of Communication
Communicating With Someone Who Has Alzheimer's
Your Approach Sets The Tone
Think Before You Speak
Doing Tasks Together
Having Trouble Being Understood
Keeping a Dementia Journal
Making Caregiving Easier - Caregiver Notebook
Things NOT To Do
When It Just Fails
ALZHEIMER'S BASICS
What is Alzheimer's
Why is Alzheimer's Different
Stages of Alzheimers
Can Alzheimers be Inherited
Statistics
The Mortality Question
TIPS AND ISSUES
New To Family Caregiving?
Tips For Dealing with Aggression
Places To Turn For Caregiver Supoort
Take Advantage of Community Support
Random Tips From Other Caregivers
Providing Long Distance Care
When To Stop Driving
Dealing With Family
Conflict
Tips on Sundowning
Ways to Reduce Sundowning Challenges (part A)
Ways to Reduce Sundowning Challenges (part B)
Helping Children Understand
Pet & Toy Therapy
Fixations
Getting Someone to Take Medications
Tips For Medical Appointments
Dealing With Resistance
Tips For Day To Day
Intimacy And Sexuality
Visiting A Person With Dementia
Music And Dementia
Tips For Holidays And Gatherings
Art as Home Therapy
PROBLEM SOLVING
What Can I Do To Be A More Effective Caregiver
Planning Tips
Dealing with False Dementia Accusations
Responding to Common Dementia Accusations
Steps to Effective Problem Solving
PROBLEM BEHAVIOURS
Anger
Hallucinations / Paranoia
Incontinence
Bathing
Dressing
Eating
Sleeping
Repetitive Actions
Verbal / Screaming
Wandering
Wanting to 'Go Home'
RESEARCH & DONATIONS