Questions to ask when planning for the next few years

khurwitz

My (28f) mother (54) was recently diagnosed with early onset Alzheimer’s. My father, siblings, and I already know her wishes for end of life care, but I want to have a discussion with my parents and siblings about what my mom envisions for her life over the next 5-10 years. We obviously don’t know how fast this will progress, but I want her input now in how her life will be once she has more trouble making decisions, remembering, and getting around. How can we approach this conversation? What are some questions to ask to determine her wishes for her quality of life over the next few years? Some topics I’ve already thought of relate to driving, home care versus institution, tans travel. Any ideas/help please!

Edited to say that my mom is fully aware of her diagnosis, is open to planning for things in the future, and hates being coddled, so she will want to be directly asked these things.

Quilting brings calm

Try making the conversation about everyone’s wishes for yourself.   Your mom may then speak up about her own wishes without discussing the fact that she has dementia. 

—Hey, mom, dad, I have this friend, coworker, hobby buddy that’s got a terminal illness. She’s trying to decide what to do.  She’s not told me the actual disease.  Discussions with her have made me think about what I’d want if it was me.   I’d want x… what do you think you’d do?  

Make sure you are honest about what your own wishes would be so that you get your mom’s true  thoughts in return 

If you read some articles that discuss the progression through stages,that should give you some specific points to address.  ‘My friend said she will eventually be unable to drive,  handle her finances, handle her bathing and bathroom duties, walk, etc.  She is trying to decide how aggressive she wants her treatment to be, and how long she wants to live at home  versus assisted living etc. What do you think?’ 

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Wilted Daughter

The ALZ helpline has materials that may help you.

• End of life decisions: Honoring the wishes of a person living with Alzheimer's disease.
• Late stage care: Providing care and comfort during the late stage of Alzheimer's disease.
• Medicare's hospice benefit for beneficiaries with Alzheimer's disease.

You may call the help line at (800) 272-3900 or check ALZ.org 

*The file was too large to attach,  but the help line can send you a copy

Hope this is helpful and best wishes