How should we explain to my mother with Alzheimer's that she needs to stay in assisted living?

Markrich2200 asked...

My mother has mild/moderate Alzheimer's. She has had multiple falls in her split level home and after a stay in the hospital my sister and I moved her into an assisted living facility. My mom likes the place (its new, very well decorated, great meals, lots of staff interaction and assistance, etc.) but thinks she has been sent to a nursing home. She and most of the residents stay in their rooms except for meals. My mother has only told a few friends she has moved and tells them its only temporary. Now my mom wants to move in with my sister (lives alone out of state) who has assumed care for mom's dog - her normal life companion. My sister is concerned about leaving mom home alone while my sister is at work and how she will deal with mom as her disease progresses. Mom is displaying depression and doesn't seem to understand our concern for her health. Her physician told mom she has early dementia, not Alzheimer's specifically. My mother has lost short term memory. So I talk to her about her situation and the next week she questions me about, I re-explain and the cycle continues. Q1: how do we help mom realize and remember her condition without making her sound terminal (she is 80 years old)? Its painful to have to have this talk with her every few weeks as she thinks she is just old and forgetful. I think her Internist should tell her face to face so it might register. He has only told me via phone but not her. Q2. My sister agreed to let mom visit for 1 week every few month as a trial. I think it should be 2-3 weeks. If my sister decides no how do I explain it to mom who is already depressed over her living arrangements? My mother was widowed over 40 years ago and has lived alone ever since. A room mate at her place is not an option she will consider and she is reluctant to participate in any facility social activities. HELP!

Expert Answer

Joanne Koenig Coste is a nationally recognized expert on Alzheimer's care and an outspoken advocate for patient and family care. She is the author of Learning to Speak Alzheimer's. Also, she currently is in private practice as an Alzheimer's family therapist. Ms. Koenig Coste also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.

What a dilemma! The good news is that you have done the appropriate steps in making life as uncomplicated as possible for your mom. A placement in an Assisted Living facility (ALF) is the most logical step considering her fragile physical and cognitive functioning. Congratulate yourself for having the bravery to make this unpoular move! The not-so-good news is that there is nothing you can do to get your mother to 'realize and remember her condition'. The presence of Alzheimer's (AD) has already eroded her ability to store the information you have given her concerning the reason for her poor memory. Combine that with the failing means to process new information and the inability to recall bits of info that have never been placed into brain-storage, and you may be more clearly able to understand why this 'cycle' keeps occurring. If her physician were to use the word 'Alzheimers', it would still not be recalled later and would not change the scenario. Alzheimer specialists are now sure that the emotional state of the AD person is of more concern than the physical or cognitive state, when attempting to find the best caregiving solution. Continue to do whatever possible to keep her feeling positive even if it includes 'stretching' the truth! The fact that your mom has told a few friends that the ALF move is 'temporary' underscores her need to think that is true. You might find a positive reaction if you also suggest it is "for a short time until the doctor says you are strong enough to leave". This is, in fact, true - if her physician were to imply that mom had improved sufficiently to return home then she certainly could leave. Of course with AD, a progressive neurological disease, this simply can't occur as patients do not 'improve', but it does provide her with a kind of hope that makes the placement more tolerable. Try agreeing with her when she states the facility is 'like a nursing home'. You might say, "I can see why you feel that way but I think it feels more like a hotel", then go a bit further and mention the 'lovely meals and beautiful rooms' etc. Do share your assessment of her depression with the physician for possible short-term solutions and chat with the folks at the ALF who provide activities and relate the things that once held her interests - hobbies, travels, movies, etc. Share your desire to have her more involved in their programming and remember they have been trained into getting residents interested in attending. Your second query is related to the length of time to be with your sister. Please consider that moves, of any sort, are extremely disruptive to the AD person's sense of well-being. Each time she returns to the ALF, it will seem like the first time with all the accompanying apprehension and sadness. Likewise, when she revisits your sister, it will take many days to re-adjust to the 'new' surroundings. Perhaps the best scenario would be for your sister to visit her at her new abode and rest assured, this may be the best solution for mom's feeling of security. Remember to take care of YOU.