"Joy and woe are woven fine." - William Blake
There is a wonderful book for caregivers that offers expert advice ... from a caregiver. It is focused on her experience caring for someone with Alzheimer's, however, the experiences and advice are relevant for those suffering from dementia... and really any chronic conditions. There are lessons learned for us all... including patients.
One thing I see too often on my dementia/Alzheimer's Facebook page is the struggle caregivers have with the behaviors of our loved ones. I saw it myself during a trip to help my dad care for my mom. Modeling different types of responses to our loved one's questions and actions demonstrated how her behavior changed. Choosing Joy Alzheimer's: A Book of Hope taught me I was on the right track and provided new tactics I can use to engage my loved one.
In this post I'd like to share some of the thoughts and suggestions that I feel are most important. And, I hope you will read the book yourself to see what might be able to help you on your journey as a caregiver.
Family caregiving is a role you don't necessarily choose, nor did the patient choose their condition. A diagnosis (verdict) can change family plans.
Observation and thoughtful learning, rather than continuing typical responses to day to day challenges, is needed. This then allows for a conscious change to one's world view and reactions to the new reality.
Avoid confrontation and involve the loved one in decision making and work through differences to increase the likelihood decisions will be accepted without argument.
Reflect on the attitude you bring to the situation. Exhibit and offer your loved one calm, compassion, kindness, tenderness and love ... and it is more likely to be returned. There is no guarantee, but it is worth a try.
Fight the disease, not the journey.
Make the decision to have sweetness and joy in the remaining years you have with your loved one. Then create times for happiness and minimize drudgery.
Say "not now" instead of "never"
Question instead of command.
When they don't remember, don't respond with annoyance and frustration. If your loved one remembered, they wouldn't be asking.
Begin processes to take over or take control by consulting with your loved one first to alleviate their fears. When the are comfortable and ready, thy will turn over their control.
Maintain a calm atmosphere.
Organize - a schedule for aids, medical history, active medication list, important documents, list of doctors and appointment schedules, issues to discuss with doctors.
Partner with professional caregivers and be an active participant in the patient's care team.
Make time for yourself. Take care of yourself, so you can care for your loved one. Find balance with friendships, finding support, exercise and continuing to live your own life.
Dismiss unsatisfactory aids and other home care workers. This is especially true for those who don't have your loved one's best interest at heart. A simple, "this isn't working out for me/us" is all that needs to be said.
The bottom line is that family caregivers should carefully manage woe and joy; keeping the JOY the winner!
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