Expert: Michalene Peticca - 10/10/2006

Question
Hi,
  I hope you can help us because we are at wits end.  My father-in-law has dementia.  My wife and I guided him and mom thru the process of selling their home and moving into an independent living condo in a very expensive step down place which supposedly has nursing care built in.  
   My mother in law has been complaining for over a year that dad is driving her crazy because he asks the same question 30x and wanders around at night and just seems like a lost soul.  She has kept his behavior under control but lately she has gone into the hospital and is now in respite care for who knows how long and dad has gone off the deep end fretting and continually looking for her.  My wife has had to take an absense from work and lived in their condo and taken meals with him in the dining room, etc.   Now she is a nervous wreck trying to be dad's mind for him.  Now he is at our house and she is always awake listening for him getting up and I can see the effect of the stress on her.  
   I have dealt with people with dementia and urged her to speak with his doctor.  The doctor is no help at all and she couldn't care less.  She prescribed Arecopt and some other drug but it isn't working, he is still all fretful.  I urged her to get a referal to a doctor that specializes in this but that has become easier said than done.  
    I have also urged my wife to look at her dad like our children were when they were small and guide him through each step of the day.  But she has a big problem treating her dad who was such a great man as a little kid.
     At the independent living place they told my wife that her father cannot be left alone but that she cannot take meals with him.  This drives him batty as he can't understand it.  They also are scruitinizing him as to whether they can stay there.  Yet nursing care doesn't seem needed yet and it would kill her mom to be separated from him (yet that is also changing with her)
    In other words she is at her wits ends and nobody seems to care.  Can you offer any suggestions?

Answer
Hi Don,
Thanks for writing.  This sounds like a very challenging time for you and your family.  I get many messages from folks in the same situation, so don't feel alone out there!

Unfortunately, when a person has dementia, changing environments (as this case to the independent living) exacerbates the wandering, sundowning, memory loss, etc. aspects of the dementia.  That is, your father-in-law may never really adjust to his new surroundings just because of the dementia.   However, there does come a time when a transfer is necessary.  And, it sounds like it truly was necessary for your mother-in-law.

I would suggest a true family meeting on this one with some straight questions to be discussed:

1.  What would hurt your family more? a. 24 hours a day, 7 days a week care of a great father that is ridden with dementia and will never be cured (no medication will stop the progression).  OR.... b. finding suitable placement at the retirement community or elsewhere (there are good nursing care centers with specialty dementia units) that you can visit, take him out for meals, take him home for a few hours to visit and enjoy the time as Quality time and not just supervising time?  

These are tough questions, and tough decisions. It is a terrible disease. And it could go on for years.  It is OK to have a life and be a part of your father-in-law's life in a calm, loving, supportive way.  

As for the physician question...keep searching.  There are good Geriatric physicians around.   Check out the American Geriatrics Society website and they have a listing of geriatric doctors throughout the U.S.   Also, Johns Hopkins School of Medicine or their dementia facility CooperRidge also has a website and may direct you to good physicians.
No medication will stop the dementia and only a few of the anti-anxiety meds. will ease some of the behaviors...but, keep trying.

I wish you well and know you all will make the best decision for your family.

Best Regards,
Michalene Peticca, MA