Expert: Mary Gordon - 4/17/2009

Question
My siblings and I have just  found out our mother has Stage 3 Alzheimers. She lives more than 200 miles from us in another state and has noone around to help. Her doctor has advised us not to let her live alone as she can be a danger to herself. He also said she cannot drive but she refuses to stop. We are meeting Sunday to discuss how to get her up here and under proper care. Her doctor has advised us to be careful how we approach her as she may spin out of control. She does not know her diagnosis but suspects something is wrong. Do you have any suggestions on how to tell her, and how to get her up here. Thanks in advance.   Ginni

Answer
Hi Ginni, if you haven't had close dealings with a person who has advancing brain damage from a progressive dementia - it's going to be hard to get your head around what is happening to your mother.

Here is a really terrific article that both you and your sibs should all read - actually print out and read a couple of times. It will give you insight into what is happening to her, and how she experiences the world.
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...
You will probably also want to buy yourself a copy of the 4th edition of The Thirty Six Hour Day, by Mace and Rabin. It's in softback, it's not expensive, and if you only buy one book on dealing with a loved one with a dementia, this is the one to purchase.

You are doing the right thing to get her moved where you are, as you will not be able to manage this situation unless you are in close proximity to her. The family meeting is a great idea. You all need to be on the same page. You are so fortunate her doctor involved the family and let you know what is happening!!

I'm suspecting she is a little further along than Stage 3, or the doctor would not be expressing immediate alarm - and I think he would have told her what the diagnosis is if she was that early on. You know her better than anyone - would knowing make her more likely to be cooperative with the planning that has to happen now? Some people are relieved to know what is wrong with them, and appreciate the opportunity to start to get their affairs in order. My mother in law was told -she was impaired enough not to be devastated (she kept forgetting what she had). She was actually relieved to have a label - she wrote it on a slip of paper and carried it around with her for months.

As the adults with the intact brains, give yourself permission to be creative. Use whatever you have to use - sadly, this fight doesn't have to be a clean one. You have to do what you have to do, because safety trumps everything else. Pat, sooth and comfort. Distract. Use humor. Call in the help of family friends, neighbors, relatives - and any authority figures in her life if you need to. You don't have to tell her everything - in fact it's better if you don't. You can leave out key facts or tell her white lies.  You can also use her impairment (i.e. we talked about this last week). You are very unlikely to get her agreement, her permission or her approval for anything you have to do - so don't expect that. Arguing is not going to work, confrontation will make her upset, and a damaged brain will make logic useless.  Think sideways - partial truths and loving deception can work wonders. What I mean by that, is you tackle things one step at a time, so you don't have to overwhelm her with a long string of negatives that she won't understand, and that will upset her (well, you'll move here and we'll see your house, and you can't drive and we'll sell your car, and we'll.......). Don't expect her to be able to think through what needs to be done - if she is overwhelmed, she will freak out and dig her heels in. She is also very unlikely to be able to make decisions that are sensible.

Expect to have to make all the arrangements and just implement them. Don't involve her in the packing, the selling, the fuss. If you have to tell her, try to present it in a way that saves face for her (i.e. Mom, John and I are worried about you getting down on your knees and cleaning. I know it's silly, and I know you can do it yourself, but - as a favor to us, can you just indulge us....we've hired Melinda to come in for a couple of hours. You don't have to worry about anything - lets just try it for a week or two...).

No laughing but that was pretty much an actual conversation we had with my mother in law in Stage 4, when we were still maintaining her in her own apartment. She was adamant she could cook and clean and shop, and she really couldn't at all, so we had to spin it so she could roll her eyes and think she was humoring her dopey son and daughter in law. We did a huge amount of cajoling, soothing, patting, smoothing. We also did "Good Cop/Bad Cop". My mother in law was somewhat intimidated by me (I'm manager of a large department), so I'd be the Bad Cop and tell her very briefly and matter-of-factly about something that had to happen, and then my husband was the Good Cop doing the sympathizing and soothing and agreeing that it was unfair and rotten. I'm not saying this will work for you, but I am saying - pull out all the stops and do whatever will work. You know her best.

First step is to get her physically where you all are. Have you got a plan for where she could stay? Can you start with a visit and work things out from there ?  I'd suggest coming up with some ruse to have a family member go down there and either get her, or drive with her back in her car. Once you have her there, you have some opportunity to really figure out what she is capable of - i.e. she is very much likely to be far more impaired, and on more fronts than is apparent during a social phone call or brief visit. Be suspicious.  Check what she tells you. Ask her to show you things (I was totally floored one day in the early stages when I found out my mother in law could no longer understand a calendar - and I only found that out by showing her today's date and asking her to show me a week from today - which I did by pretending to be confused myself about an appointment).

Once you've got her under your wing, you can get the wheels in motion. We found with my mother in law, for example, she'd be unhappy about something we'd had to arrange, but she couldn't organize herself to do carry out the steps required to do anything about it. For example, your mom may want to go home, and if you make the car disappear (in for repairs or maybe her niece had to borrow it!), she may not be able to figure out how to leave (i.e.  just let her try and do it herself -if she wanted to take the bus for example, she'd have to figure out how to call the bus company and get the schedule, get herself to the right station at the right time by calling a cab, buy a ticket etc. etc.). Just don't get into arguing and confrontation. You can use her memory problems and short attention span to divert, distract, get her onto some other subject or activity.

I know this is going to be tough. The family should also be starting some research into all the supports and options available where you live. Someone needs to be dispatched to a good lawyer to figure out what needs to be in place to protect both her and the family (i.e. wills, powers of attorney, estate planning, insurance planning etc.) before she becomes too impaired to legally sign documents. Laws vary from location to location, so you need to be informed about the Medicaid and Medicare rules where she will be living, and take steps to be able to manage her assets so they are preserved for her benefit. Caring for a person with dementia, whether at home or in a care facility can be breathtakingly expensive.

Hope this helps - - and I know you are reeling at the moment and your brains are buzzing with a thousand questions. It will start to feel better when you start assembling the information you need to make good decisions - and even better than that when you  formulate a plan you can all put into action.

Come back with any question at all - I've been in similar shoes, and I'll do anything I can to assist.

Mary G.