Preparing a Parent With Dementia to Move to Assisted Living

I received an email yesterday from an out of town daughter wanting to know if discussing the move to Assisted Living with mom and discussing the fact she has Alzheimer's should be started even though a discussion about Alzheimer's has upset her in the past.

My response is this. A discussion such as this is not going to be easy and mom is going to be upset. I would never do it over the phone, but certainly as this is going to be a life changing event, you do need to remind her that she has an Alzheimer’s Related dementia disorder and your job as her power of attorney is to keep her safe. Actually, I am sure her mother already realizes her cognitive changes. I bet it already makes her nervous. This has got to be the most difficult time in her life and I am very sensitive to the family's needs as they undertake this challenge. I won’t pretend that it is going to be easy for the parent or the family members. But just keep in mind that persons with a diagnosis of dementia are protected such as young children are by the State. The authorities take their safety issues quite seriously and have enacted laws to ensure safety. Whether they are placed in a community setting, are cared for at home with 24 hour caregivers, or go to a nursing home when the decline is progressing, a parent should be made aware that because of wandering, cooking, and driving issues, they will no longer be able to live independently. Although a parent may get angry at you, or may get very emotional, I believe they should be told what the plans are and and why.

I have worked with other adult family members who have lied to their parents out of guilt,not having had warm relations in the past, or out of avoidance of this discussion. They have told a parent that it is only going to be a temporarily thing – much like going to camp for the summer while their condo is undergoing renovation. While that provides a sense of relief for the adult child, it is disastrous for the parent. This approach doesn’t serve a parent with dementia well because they will not forget what families have promised. When a couple of months go by and they are still living in assisted living, they get really angry and become belligerent with staff – ultimately needing to have private caregivers in addition to costs of providing care at the ALF. It doesn’t serve the parent and they feel betrayed. The one thing about Alzheimer’s I haven’t been able to figure out is why persons with this disease NEVER FORGET a memory that is tied to a great emotional experience!

Although this is an emotional experience, honesty is ultimately the best policy. Enlist the help of the facility you are considering. They have many years experience in this arena. Allow a parent to process the need for safety. Don’t use the word facility and do use the word "Community" instead. And if a parent refuses to move, then you may need to enlist the help of the courts through guardianship - always an expensive proposition.

As carer for my mother 13 years ago I also crossed this path and made the difficult choices for my mother's safety as she wandered and couldn't find her way back home one day. If any of you have gone through this journey and would like to share your comments, please do so by checking the comments link below.

At A Good Daughter offices we run a dementia support group free of charge for family caregivers on the 3rd Wednesday of every month between 5:30 pm and 7:30 pm. Please RSVP to olga@agooddaughter.com to sign up.