Expert: Mary Gordon - 9/14/2008

Question
Thank you for your detailed answers to my questions. It would take me a month of sundays to explain why my mother would never go see a doctor unless she had a problem she recognises and feels they are competant to handle. (like a broken arm) My mothers doctor died years ago, and she thinks ALL other doctors but him are quacks. She has good reason to believe that, as when I was a child she was deathly sick for years, bedfast, and down to 68 lb. She was given 6 months to live. She even tried psychiatrists to see if it was all in her head, as panic attacks back then were rarely talked of, and she was having them. Long story short- She went to a clinical ecologist who did food and chemical allergy tests, and put her on pin/neutralization and organic food, getting household chemicals and perfumes out of the house and such (which main stream doctors think is quackery and a placebo effect at best) and she had the most remarkable recovery anyone has ever seen! It was no placebo effect!! All the mainstram doctors filled her with meds and were misdiagnosing her, and killing her. She became healthy after being sick for 15 years, and hasn't looked back. She led a full life on this treatment. She is so sensitive (and afraid) of hospitals and doctors, and the cleansers they scrub the floor with (chemical sesitive) that taking her to the doctor now is absolutely out of the question. She has made it clear all our lives tha the worst sacralege a son can commit is to put her into a nursing home, or give her ANY chemical meds. (she only uses her own home remedies) She HAS NO medical history since the 60's!! She's like granny on the beverly hillbillies. She cannot be conned, either. I have, however, done some important things, like hiring an estate lawyer, getting the powers of atty on med and financial, and am attempting to get some LTC insurance. The problem with the LTC is, that to get the insurance, she will have to be interviewed. Not a physical, but an interview. I MIGHT be able to talk her into that, but I don't know how intensly they will drill her. Do you know? I figured I would try Visiting Angels first (like you did with housekeeper) and pay for it out of the ssa she gets, and the money VA will kick in. That would cover 2k a month. If I can get the LTC for the remainder, I would have a chance to pay the other 2k for nursing home. 4k total.(which she would only go to if she was totlly unable to think or speak) She even made it clear in her will 6 years ago when my father died that she was not to rec meds, food, or resusitate. She started making short term memory loss complaints daily back then, and was told by my dad's hospice nurse (he died of als, and she cared for him to the end in their home) that her symptoms were from grief and lonliness. I have held out hope all these years that it was that, bec she still can do a lot. I moved her in next door to me, and see her daily. If I tell her I am picking her up at noon, she is calling at 12.05 promptly to see that I am not late. She is always dressed properly in the right clothes (that she makes by hand) Anyway, I felt compelled to write back and explain. Why do you think she will get that bad in 1 year?? Do you have any input on LTC interviews. I fear I will not be able to pay without it, and I want her to have good care. Medicaid is out of the question for 5 years. Thank you, hope to hear from you again.

Answer
Hey Dave,
Sounds like you are doing some of the right things with respect to the legal aspects. The thing is, with no diagnosis and assessment, it is extremely difficult to know exactly what is going on, much less how long it will take to progress (if it is indeed a progressive dementia like Alzheimer's). You are really in a pickle on the medical front, and not having a diagnosis means you can't really be sure what she has or how it will progress, much less be able to take advantage of the medications that might help.

If you had met my mother in law when the symptoms became obvious to us, you would have told me I was nuts. She was charming, well groomed, and could keep up a great social conversation. Besides the forgetfulness (i.e. calling us three times to confirm when we were coming over, losing bankbooks like your mom, forgetting to set the table or thaw out the rolls), one of the things that sent prickles up our spines was trouble with sequences - and this is not unusual.

It started with issues around finding the shows she wanted to watch on TV, showing up on the wrong day or time for appointments, some trouble staying on top of bills etc. It took us some time to do the very close questioning that revealed that the idea of numerical, temporal or logical sequences was getting garbled - the notion that Monday was before Wednesday, that March was after January, that 1 pm was three hours after 10 am. This is a fundamental concept that most of us take for granted, and it goes early in most people with AD. It explains a lot when you realize that if they look at a calendar, they may not realize that Monday the 5th is a week before Monday the 12th. If you showed her a calendar and said, okay, here is today....show me tomorrow, show me yesterday, show me two weeks from today....she couldn't do it.  She was at great pains to hide her deficits as well, and she was a master at it to the point that very few of her friends had a clue how impaired she was. We don't usually question our loved ones closely, so her friends were fooled entirely. She could yack on the phone and sound completely with it. No one would guess that she didn't realize that Channel 7 was after Channel 6 on the TV dial, or that turning up the air conditioner required going from #4 on the dial to #5 (or the reverse, depending on how the appliance is configured).

Short term memory issues also lead to disturbances in their sense of time, for obvious reasons. If your brain is no longer retaining much new information, or the retention is spotty, you can't tell how long its been since something happened. You don't have a sense whether its been 5 minutes or 5 hours - you are in an eternal NOW with no sensation of the passing of time. The numeracy/sequence issues then contribute to trouble planning out routine activities. For example, you have an appointment at 2 pm. You need to get prepared an hour earlier than that, you need to call a cab a half hour before you need to go because the trip takes 20 minutes and the cab takes 10 minutes to come, and you need to be ready in the lobby five minutes early. All of this becomes almost impossible for them to calculate and plan for.  You can imagine what this kind of thing does to a person who is taking meds - even home remedies. They don't remember when they took something, or if they took it, or how much. Think about the sequences of activities involved in many common tasks, like taking a bath. If your brain can't track the order anymore, even simple tasks become daunting.

If she does have AD, throw out all the assumptions about what she wanted in the past. Brain damage will make her a totally different person. She will still look like her, still have some of her mannerisms and traits, but every other assumption will need rethinking. For example, when my mother in law moved from assisted living to the locked AD ward, she did not realize she had moved. Obviously, there was no point to really discuss the move with her, much less ask her permission. All we would have accomplished would have been to distress her. Even though she moved to an entirely different facility, a different and much smaller room, she was not really aware she was in another place. Sometimes the confusion can be a friend. You made promises to the woman she was then, and you need to be flexible because if she has AD, she will be so totally different in terms of what she needs and wants, that what was said in the past means nothing. You will torture yourself over promises made when things were entirely different, and when she was entirely different. If she has AD, you being able to cope, look out for her and keep her safe is every bit as important as where the care comes from. After all, if you run yourself into the dirt trying to do it yourself, she's in trouble.   

After all, if a person regresses to the stage where they are pretty much like a three year old, and will eat with gusto if its put in front of them, no one is going to withhold food from them.  You can ask for no artificial feeding (i.e. tubes), but there is no evidence that that practice prolongs life in a person in later dementia, or reduces suffering.  

I don't much about LTC insurance, but I would be gobsmacked if they would give it to her at the age of 81 without a physical and a MMSE as a minimum - a total lack of medical records is not going to fly with an insurer. Dementia is the #1 reason for institutionalization. If you have your marbles, even if you are infirm, you can usually be kept at home with supports. No marbles = needs 24/7 supervision most families can't sustain.

The MMSE is a mini-mental state exam. It is an 11-question measure that tests five areas of cognitive function:orientation, registration, attention and calculation, recall, and language. The maximum score is 30. A scoreof 23 or lower is indicative of cognitive impairment. The MMSE takes only 5-10 minutes to administer andis therefore practical to use. There are also some similar tests that are used that involve copying or drawing some simple things, like clock faces (i.e. you tell the person to draw a clock face, put the numbers on it and then the hands showing a specific time). They also may ask the person to copy some simple line drawings, like stick pictures of a house, or interlocking pentagons. The two screening tests combined are fairly sensitive - pretty much a 94% success rate for detecting cognitive impairments like AD.   

I can't tell you for sure will need help within a year, but it does pay to be a pessimist rather than an optimist. Optimists get caught with their pants down because they don't do their homework early enough, assuming they are made of time.

As I mentioned, if she has AD, physical illness or injury will make her take a real nosedive mentally - i.e. if she gets sick, or has a fall and breaks something. So, its not just the AD progress itself that may make things dicey, but anything that might put her under stress of any kind.

Most of the dementias do tend to pick up a head of steam once they reach a certain point - there is a tipping point after which the losses are more serious in nature. For example, in the very early stage, the brain damage is progressing, and is therefore pernicious, but its all under the surface. What you can see from social contact will just be minor forgetfulness. My mother in law was diagnosed about a year after we first saw forgetfulness interfering with daily life. She was at home in her own place for about a year and a half after that. A year in assisted living, two years in the AD ward and two years in heavy care - so the journey was about 7 - 7 1/2 years from noticable signs to the end. However, she was only in her early 70's when this happened, and robustly healthy. AD itself is considered a fatal illness, and having it complicates the diagnosis and treatment of any other health issues that may arise. It significantly shortens the persons life expectancy. Median survival time for a person over 80 diagnosed with dementia is about 4.3 years.  

A lot can happen in a year. I'm not sure if this helps or not. Good luck with your efforts. I really feel for you - you are doing the best you can with a very difficult situation.

Mary G.