Expert: Mary Gordon - 2/9/2008

Question
My mother was just diagnosed with AD she is 70 years old.  She does not know that I have found this out.  The family has noticed several symptons for seversl months and it has progressively gotten worse.  I need advice on confronting her.  I have watched memory loss, getting confused, unorganized, cannot find anything, spending money, getting lost within a few blocks of her home. Talking with her is not going to be easy, she will not want to discuss the future and what it will hold for her.  My husband and I own our home and we live 2 blocks from my mother we both work full time jobs,we still have 2 kids at home 10 and 12.  I do not know where to begin with anything, her home, finances, her driving.   Thank You, Lisa

Answer
Hi Lisa, I'm going to blether on for a bit, and you can take away any useful ideas for your situation. You know your mom better than anyone, so you are the one who can best figure out what is going to work.

One of the first stops before you really tackle anything directly with your mom should be a lawyer specializing in estate planning where you live. You and your family need to understand what you are going to need in place to manage her affairs, and navigate the insurance laws that apply (i.e. if you are in the US, Medicaid and Medicare and the specific "look back" periods that apply). You are going to need powers of attorney for her for health care decisions and financial affairs, you are going to need her to sign something for her doctor allowing you to discuss her situation with him directly, her will needs to be in order, and if she has ever had opinions about keeping her alive by artificial means, a "living" will would be good as well. The lawyer can tell you what you need to protect her, her estate, and minimize the problems you may face over her care in the coming years. The more you know about what needs doing, the better - you don't have to "eat the elephant" all at once - you can tackle things one bite at a time, forewarned is forearmed.. At this point, the real concern is that she may become too impaired to sign legally sign papers, so you need to get wheels in motion. The average family that does this kind of up front estate planning for dementia care saves 60K, so its worth doing.  

One of the next things we did was to sell my mother in law on a fee for service financial planner by telling her we used the person for our taxes, and why didn't my mother in law give that a try instead of struggle with the paperwork herself. The planner was great - we got her to wade into my mother in law's finances and figure everything out - how much insurance she had, where the bank accounts were, the safety deposit boxes, all sources of income and assets. We got a good picture of my mother in laws net worth, and some opinions from the planner on what needed attention to make it easy to manage going forward, and also to make sure her money was working for her (i.e. like a lot of older people, she had money sitting in multiple back accounts at low interest rates).  The best part about the planner was...she wasn't "us". My mother in law would cooperate and trust the planner more than family or friends because she was outside of our circle, so she was neutral - and a bit of an authority figure because she was a professional.

The thing with people with Alzheimer's is that their ability to reason is damaged. This is not just a disease of memory. She cannot see what is readily apparent to you - she has no insight into her own problems. Even if she can grasp her impairment, she can't think through what to do about it - and then she'll forget the train of thought immediately anyway. Her life is becoming a swirling, terrifying jumble to her - kind of like being very drunk at a big loud party. She's holding on with her fingernails, and she's going to come up with crazy, paranoid explanations for things that happen to her. After all, if your mind and your perceptions have always been reliable, your working assumption when things aren't where you think you left them is that someone must have been in your house moving them or taking things. She's very scared, so she will be very defensive and will be in denial. Arguing with a person with dementia gets you nowhere because logic doesn't work. She'll get upset, and she'll forget the details of the fight but remember that she's mad at you.  So, if you've never been sneaky in your life before, now is the time to develop that skill. You are the adult with the intact brain and the accurate perceptions, and the priority is her health and safety, so be creative and find ways to get around her. You know her better than anyone. You are very unlikely to get her agreement for things that will be necessary, or her endorsement of any plan, so don't wait for her to say "Sweetie, you are absolutely right, what a great plan." That day will never come.

A really good book to buy is called "The 36 Hour Day" by Mace and Rabin, published by Warner. Its in paperbook, its inexpensive, and its the single best book I've ever seen on dealing with dementia. It will give you lots of helpful strategies and insights, and prepare you for things that are likely to happen.

Is there anyway your mother would accept some help or be more cooperative if you phrase things as being a favor for you?  Can you tell some white lies, and say you know she's just fine but you are worried about something happening and get her to sign things one at a time?  We often presented things to my mother in law as being for us, not her, and would she humor us and give them a try. Do you ever help her with her bills? Would that be an opportunity to get her to sign anything?  Loving deception is not a bad strategy. We spent a lot of time soothing, patting, reassuring, fluffing, flattering in order to get cooperation. This is not the same woman you have known all your life. She has global brain damage - so be creative, and non-confrontational. You don't want to get her back up and have her dig her heels in.  Are there friends or neighbor, or anyone else like a pastor or rabbi whose opinions she trusts? Don't hesitate to call them in to assist - or find ways to help you. If she had a close friend, for example, who you could get in cahoots with you, and get her to convince your mom to tackle some aspect of her affairs with the friend (i.e. the friend could say she's going to make these arrangements and maybe your mom could come along and do the same with her own).  

As I know you know, you are going to have to be a very thorough detective with your mom. We resorted to all kinds of stuff - like my husband taking his mom out shopping, and I'd search her apartment, looking for unpaid bills, dirty laundry, whether there were supplies, what was broken or torn or filthy, anything scary or dangerous, signs of her letting anyone in, getting scammed etc. One thing we did early on was get all her bills and banking mail diverted to our house, to ensure things were paid. You will have to keep a very close eye on her. She is very unlikely to be able to live safely alone much longer - she will not be able to cook and clean for herself properly, dress appropriately, handle money, deal with appliances. If she has medication she takes, that will become a major concern, as she will not be able to track when she takes things to get the proper dosage and avoid overdose. Even now, I'm willing to bet money she is having trouble reading and understanding a calender, or understanding a clock. Their understanding of sequences goes very early, so they don't know that one comes before two, that March is after February, or that Monday is earlier in the week than Thursday.

As you observe, the getting lost is a major problem. I would iron some labels into her clothing with her name on them, and YOUR or other family members phone number, in case she gets lost. If your local area has a "Safe Return" program, I would give some serious consideration to enrolling her (its usually a joint venture between the police, and the local Alzheimer's Association, to keep on file information about known wanderers to ensure they get identified and returned home safely as soon as possible).

On the driving front - in many jurisdictions, the doctor has a legal obligation to report her to the licensing authority. If he does not, you should. Driving is not a right - its a privilege. People with AD don't just have memory issues - they have changes in emotional control, their reasoning and logic, their reaction time, and their depth perception - all the stuff you need to drive safely - and your kids and other innocents are on the sidewalks and roads she drives along. In most places, being reported will  result in a letter from the motor vehicle authority, asking her to do a driving test or lose her license. With my mother in law, fortunately, the doctor did report her, so he was the bad guy. We got her a copy of the driving manual, but the prospect of having to do a written test (never mind the road test), was enough to stop her cold - she just couldn't have remembered all the speed limits and signs.  We then sold the car immediately, so the temptation was gone, and set her up with an account with a local cab company - but don't be surprised if calling a cab is too much for your mom.

I know all this is overwhelming and daunting - I have been in your shoes. When my mother in law was diagnosed, both my husband (an only child) and I had full time jobs and one toddler, and by the time her journey ended, we had three children - aged 8, 5 and 1, and yes, I was still working full time. Do as much research as you can - the internet is a godsend. Contact your local Alzheimer's Association and any Seniors organizations near you and find out about local resources and supports. Find out what facilities and services there are, from assisted living, to housekeeping and meal delivery, adult "daycare" programs. Knowledge is power - if you have done your research, you will be prepared for whatever happens. This is a disease where a very pessimistic attitude pays off, because it means you plan for worst case - and then if you don't need the plan as soon as you fear, you can be pleasantly surprised. Being organized and prepared will be particularly important for you, because your plate is already full with your job, your marriage and your children. You can't wait for crisis to happen and then scramble for a solution - it will be just too stressful!!

I'm here for you if you want to ask anything at all. I hope this has helped a bit. You will feel better once you get started on some action. Just keep in mind you don't have to do everything at once - you can be insidious and work away at things bit by bit, without having to have a blow out Big Serious Talk with her.  Best of luck, and I'll be thinking of you.

Mary G.
Toronto