Expert: Mary Gordon - 5/5/2010

Question
Hi Mary- I read Cynthia's question to you and it sounds exactly like what we are experiencing with my dad.  His symptoms have become more severe since my mom passed away.  The mental Health outreach program was in contact with us. The case manager did an assessment on him and wanted their physiatrist to see him.  He saw that her card read "mental Health" and told me he didn't want to see them anymore.  My dad is 83 and still lives by himself, is extremely forgetful(writes things down on pieces of paper that he has everywhere)and thinks my brother and I are out to lock him and steal his money. He continually tells us both different stories, and tells the same stories over and over again. You help him out and then if something goes wrong it's your fault. He is very self-serving and everything revolves around him. My brother and I feel ourselves pulling away as he drains our energy and leaves us depressed. I have been doing his laundry and cleaning once a month but now he tells me he has hardly any laundry.  It's been 6 weeks since I last did it for him so it's obvious he is not caring for himself properly.  He looks terrible and has lost weight.  He is an insulin dependant diabetic but has recently been given a clean bill of health or so he tells us.I believe he was tested at some point, but my mom said the tests showed it wasn't Alzheimers.  He hears music in his head as well. If you're having a conversation with someone, you must be talking about him.  How do we move forward in trying to help him when we are the enemy? It is becoming more and more difficult for us to deal with him.  Please can you help.  Thanks Diane

Answer
Hi Diane,
I know this is frightening, but he's pretty much textbook midstage dementia - probably in the region of stage 5. Although you won't be certain what is going on until he has gone for a full medical and neuro/psych work up to rule out various other things, if I had to bet, I'd put my money on a progressive dementia like Alzheimer's.

Here is the answer I gave Cynthia you are referring to
http://en.allexperts.com/q/Alzheimer-s-Disease-1005/2009/8/Paranoia-Aging.htm

I suspect what actually happened was that your dad saw a doctor at a stage when the symptoms were not overt enough for anyone outside the family to recognize there was an issue. You need a smart doctor who knows what to look for in the early stages - and one who realizes that memory loss and other signs of cognitive impairment are NOT a normal part of aging. Our family doctor is a very quick study and he saw my mother in law frequently, but she had him fooled well into the illness, because she could carry on a good social conversation. So, she'd come in and seem quite with it and rational, and make good chit chat, and he had no idea what was going on until I raised the issue with him. At the time, all we'd seen was some forgetfulness, and we thought this had something to do with some medication. He then did some basic cognitive screening tests in the office, and came back out in the hall completely gray in the face. She was very impaired and none of us had realized just how serious and extensive the problems were.

If your father has a family doctor, I would write him or her a letter, giving very specific details and examples of the symptoms and behaviors you are seeing, and either mail it or fax it to the office. Your father cannot be trusted to tell the doctor what is going on, given that he has no self insight and an impaired memory. The best bet to get information to the doctor is in writing, so when your father goes in for a visit, the doctor has been alerted and has some thoughts about what to look for.

Does anyone in the family have valid powers of attorney for your dad for either financial matters or personal care decisions? How about a signed release from him giving the doctor permission to discuss his health with family members? You are going to need these pronto. If he does have a progressive dementia, this is going to get worse and worse and it will become a crisis in short order (i.e. he will be in genuine danger on his own). If other legal and financial affairs are not in shape, it would be very prudent to look after them now, such as wills, living wills, etc. and do some advance planning for long term care with a knowledgeable lawyer. He may not be able to sign papers much longer.

If the doctor will talk to family members, it might be a plan to have someone go with your dad and get the information on any referrals - likely to a neurologist or psychiatrist with a specialty in dementia

You already know that direct confrontation and logic don't work with your father. Be sneaky and creative. Use whatever ploy you think will work. You cannot reason with a person whose mind is not functioning properly, but the most important thing is that he be safe. I think the alarm bells are going off in your gut.

You don't get his permission to do what needs doing - he's never going to give it. With my mother in law, we used a lot of subterfuge. We told her white lies, we cajoled, we soothed, we patted, we distracted and diverted. We reassured a LOT. We used humor. We tried to read the subtext of what she was upset about and label it for her with words. (I see you are really worried and upset. Is there anything we can do to help?).  We used her memory loss to our advantage - we'd tell her things had been arranged and it must have slipped her mind...or maybe we forgot to tell her!. We'd do things like arrange for her to have lunch with a relative, and go over to her place and do a thorough search for problems - dirty laundry, unpaid bills, rotting food, whatever. We arranged all kinds of supports and services, like a housekeeper five days a week, meals on wheels, a taxi service. We sold her many of these things in a face saving way, suggesting we knew we were silly, but she'd be doing us a favor by giving it a try. My husband convinced her to get her taxes and finances seen to be a professional planner we knew, who did a full inventory of the whole situation and then helped my husband get everything organized so it could be managed. We had all the bills diverted to our house so we could make sure they were paid.

A good book for you to purchase is called the 36 Hour Day by Mace and Rabin, published by Warner. It is in soft cover and is inexpensive. If you only buy one book on dementia, this is the one. It is full of helpful tips.
Here is one source http://www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias/dp/0801885094

The biggest thing to remember is that he is not doing this on purpose. He does not have the capacity any more to be deliberately stubborn, cruel, or difficult. These things require an intact brain that can anticipate the impacts on other people and plan out a deliberate set of actions. He has an injured brain and he is doing the best he can with what he has. Don't take the behaviors personally. Repeat this mantra 1000 times a day!

Get your skates on and start working on the doctor. You already know you can't let this go on like this or you are going to get a call from the police that he has gotten lost, started a fire, overdosed or been taken advantage of by someone unscrupulous.

Hope this helps. Come back and ask anything.

Mary G.