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Alzheimer's caregiving is a tough job, and it's too much for one person to handle alone. No one is equipped to care for another person 24 hours a day, seven days a week. If you're caring for a loved one who has Alzheimer's disease, understand the stress you're facing — and know how to ask for help. Friends and loved ones may be more willing to help than you'd think. Here's help reaching out.
In almost all cases, the Alzheimer's patient will progress in their disease no matter where they are or who takes care of him. Currently, at the very best there are drugs that may slow down the progression, but under the best of circumstances, the patient will always continue to decline.
In my experience my sister came up with a great description of life as a caregiver.
"it is like watching and raising your child in reverse meaning that rather than learn as they grow Alzhiemer's patients have learned but slowly lose that ability"
At first, you may be able to meet your loved one's needs yourself. This may last months or even years, depending on how quickly the disease progresses and your own mental and physical health. Eventually, however, your loved one will need more help with everyday tasks such as eating, bathing and toileting. And just as the physical demands of Alzheimer's caregiving increase, so can the emotional toll. Challenging dementia-related behaviors can strain the coping skills of even the most patient and understanding Alzheimer's caregiver.
In addition, the sustained stress of Alzheimer's caregiving can affect your own health. The physical and emotional demands of caregiving may weaken your immune system, leaving you more likely to get sick and stay sick longer. You may sleep poorly and have trouble setting aside time for yourself. Alzheimer's caregiving may also increase your risk of depression. Before you know it, you may drift away from your family and friends — at a time when you need them the most.
It is the caregiver, then, that really needs to be saved and that's one of the hardest parts of Alzheimer's caregiving.
Not to minimize the profound stress on other caregivers, the statistics for caregivers of Alzheimer's patients are scary. 43% of caregivers fall into a clinical depression that can linger for years even after the loved one has died.
The problem for the caregiver is that as the patient loses more and more cognitive abilities, the caregiver has to be in a constant crisis mode, always on alert, 24/7 even through the night. Stress, frustration, feelings of helplessness are unending. Emotions are stretched to the breaking point. Sleep deprivation is a given. It becomes more and more physically draining. In addition, the caregiver is often going through a deep, prolonged grieving process, not only from seeing a loved one fade away in front of them, but also for the loss of a life style, a career, education, losing friends, other family members, social activities and personal freedom. This is particularly true for younger caregivers, especially those with small children.
There is never enough time or money. Marriage, children, other relationships, the home and the caregiver's own well-being are frequently neglected as the Alzheimer's patient demands more and more immediate attention to the exclusion of all others.
SO, IF YOU ARE THE CAREGIVER,
Understand what you may be up against and don't hesitate to ask for and accept help whenever possible.
IF YOU ARE NOT THE ALZHEIMER'S CAREGIVER, BUT KNOW SOMEONE WHO IS ... ASK!!!
- GIVE TIME: Offer to stay with the patient while the caregiver rests, takes a walk, shops, visits the beauty parlor, goes to a movie. Make a scheduled time--maybe once a month for a few hours, or even once every other month. Don't say, "Call me if you need anything." Chances are a caregiver will not call unless it's a dire emergency. If you cannot do it yourself, but you have the resources, arrange for a professional caretaker, even if it's only half a day.
- LITTLE CHATS: A phone call or a short visit will be appreciated. Don't assume the caregiver is always so busy that she can't take time to talk. Phone before you visit. If you call while she is giving her loved one a bath or a meal, if she's unable to chat when you phone, ask her when it will be convenient for you to call back--and then--remember to do so. Don't be put off if she says she can't talk at the moment.
- FOOD: Prepare extra portions when you cook your own meals. Put the food in disposable containers and take them to the caregiver. When you shop, buy an extra pie or ice cream for the caregiver and her patient. Prepare some pudding. Almost all Alzheimer patients love sweets.
- CHORES: Be specific. Offer to pitch in and help with small chores--dishes, vacuuming, laundry, shopping, doing errands--but don't get too pushy. Sometimes, 'no thank you, I'm fine', means just that.
- AN OUTING: If the patient is easy to manage and able to go out, arrange to take him away from the house for a couple hours--picnic in the park, walk along the beach, visit a museum--short, simple activities. This will give the caregiver time in her house for a leisurely bath, to finish a book, watch a video--just to be alone for a bit without interruption.
- LISTEN: This is possibly the best thing you can do--just listen. Don't judge, criticize, deny what she says, or offer unsolicited advice. Be supportive, encouraging, and let her vent.
If you can't get enough help from your friends and relatives, take advantage of community resources. You might enroll your loved one in an adult day program, both for the social interaction the program will provide your loved one and the caregiving respite it'll provide you. You might also consider working with an agency that provides household help or assistance with daily tasks. Counseling services and support groups also can help you cope with your caregiving duties.
Remember, Alzheimer's caregiving may continue for years. Think of the process as a marathon, not a sprint. Marshal your resources and find every bit of assistance available so that you can conserve your strength for the journey. In the long run, you'll be helping your loved one as well as yourself.
Indications that a caregiver needs additional assistance:
- Not sleeping
- Crying uncontrollably
- Not getting things done
- Anger at and hitting your loved one
- Relationships with others deteriorating
- Increased drinking, smoking, use of drugs
- Poor appetite or uncontrolled eating
- Retreating into yourself
- Thinking no one else can adequately care for your loved one and refusing help.
- Always feeling sorrow, guilt or hopelessness
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
Unmet Needs Of A Caregiver
Caregiver And Work
Feelings And Caregiver Stress
Questions & Answers
STRESS, COPING & FEELINGS
The Caregiver Code
Rights of The Caregiver
Coping With Stress
Feelings And Caregiver Stress
Stages Of Alzheimer's
Helping Children Understand
Protecting Yourself From Burnout
Making Time For Reflection
How is Competency Defined?
Power of Attorney
What is an Advanced Directive?
Do I Really Need a Will or a Trust?
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
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
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
RESEARCH & DONATIONS