If you are trying to support a loved one with dementia, it can be a lonely exhausting experience.
I hope to provide you with a few helpful resources to ease the burden and improve your ability to be with your loved one through the changes. This is only a beginning but hopefully it can start you on the road to finding more.
First of all, if you are feeling a multitude of feelings and inner conflict, this is normal. No one anticipates this role and the toll it takes is immense. The resources I will suggest will never be enough. If you are struggling in any way please seek emotional support with an experienced therapist and possibly through a support group. You will need to assess your own strengths and resources and an experienced therapist can help you to be realistic and hopefully assist you to prevent burnout.
In my experience the support group can only go so far, but please seek various opportunities to find your support. Everyone means well when sharing their experiences, but each situation is unique and I saw too often generic suggestions made that can backfire, take your time with the infornation that you are hearing. There is a lot of misunderstanding about the behaviors of dementia. Please take your time going through these resources, but try to take the time to understand the reasons behind dementia behaviors and understand how different each person can act and why.
Also, what is dementia or cognitive impairment and how is it diagnosed?
First of all, Dementia is a stage of increased memory loss that can include over 100 diagnoses, including Alzheimer's. One little known diagnosis is called Normal Pressure Hydrocephalus and is the only dementia known to be possibly reversible. It is incredibly hard to determine which type of impairment someone has, and each diagnosed person may act differently than another.
See https://www.alz.org/alzheimers-dementia/what-is-dementia
Dementia and mild cognitive impairment reduce someone’s ability to function on their own. It’s important to assess if they can be alone and how you can support them to continue a quality life.
Learn the different stages and the role of ADLS and IADLS:
One of the first resources to consider is your local council on aging. They can suggest how to navigate respite and long term care, meals, informational programs, navigating costs and more. It is also critical to consult an elder law attorney and make sure that you have the legal documents in order to care for your loved one.
In my area this is https://www.tcoa.org/
Some other recommended resources:
Podcasts:
Books:
Thoughtful dementia care
The Grieving Brain
Bearing the Unbearable
Creating Moments of Joy
Finding Meaning workbook
When Things Fall Apart
Instagram to follow
コメント