CAREGIVERS FAQ

Q:  Who is the first person I should call if I suspect dementia or alzheimer’s in a loved one? -MarciaM (Boston, MA)

A:  Hi Marcia – the first place to call would be your local Alzheimer’s Association. Get accurate information about what Alzheimer’s really is and how to recognize it’s symptoms. There is a lot of confusion about what is “normal” memory loss due to aging and what is Alzheimer’s related.

 

Q:  Are the hurtful things a loved one says in Alzheimer’s how they’ve really felt for years and the disease has just taken away their inhibitions about speaking them?Carin H

A:  Good question! My family and I wondered about  that too. But here is the real skinny on that:

Angry, negative outbursts and responses are the result of disruption in the processes of the brain. The increasing lack of synapses in the brain cause extremely disorienting “skips” in processing – like a video that does not download because of …lack of cache (short-term) memory! The person with Alzheimer’s disease lives inside of a system – a nightmare recording – made by insufficient resources to receive and process input, and has too minimal a set of tools to allow them the full range of response mechanisms for output. The rage and anger they express are the result of enormous frustration with this loss of capacity and/or responses to altered states of perception that occur during degeneration of the brain. This is a DISEASE. The brain is NOT WORKING properly. Our job as caregivers is to help smooth the path for expression and connection. Read my chapter on living at home with Alzheimer’s for tips and helps, and all the best!

 

Q: My loved one just passed from Alzheimer’s. How do I be civil to siblings that never helped with her care as we all grieve together? Dorothy A.

A: Many family members and people in general do not have the ability to deal with sickness and death and simply absent themselves from the process. Remember that you are the one who has had the truly amazing experience of walking with your loved one to the end. You have the closure and peace that come from accepting that role in your life and theirs. Try to be compassionate with those members of your family who have not followed in your path or supported you. Forgiving and releasing your negative feelings about this will help you disconnect from your own expectations and cope with their presence in a loving way.

 

Q: We are thinking about hospice care in the future. What is your experience with hospice in a care facility setting? Does Medicaid pay for this? Susan 

A: Hospice is wonderful! Check with your care facility or your facility’s social worker who is assigned to your loved one. What we learned is that hospice is available for those with AD based on loss of a certain level of being able to do activities of daily living, such as feeding, dressing and going to the bathroom, and is re-evaluated every 60 days. To qualify for continued coverage your loved one must have declined in function or been ill in the previous 60 days. So for AD, hospice is not strictly end of life, but a wonderful resource of caring people and extra services – covered by Medicaid as long as the requirements are met.

Do you have a question about your journey with Alzheimer’s? See “Ask a Question”!