Expert: Mary Gordon - 9/20/2005

Question
-------------------------
Followup To
Question -
Dear Mary,
First of all, thank you for taking the time to touch so many of us out here hurting while watching our loved ones slip away from us.  God Bless you for what you do.
My FIL has been in a nursing facility since Feb 05 as his AD progressed to where he had to have skilled nurses.  We have noticed a severe decline in his communication skills, he seems to be "zoning out" for minutes at a time, apparently he's unable to eat and has been advanced to a soft diet, which he still has trouble with.  He is unable to follow a "sit" suggestion.
We understand that there isn't much they can do for him at this stage, besides comfort care.  We have all the appropriate DNR forms in order.  
The doctors are going to do an MRI on Thursday.  I'm not sure what they will be looking for?  Dad has suffered 3 previous strokes, DM, HTN, was suffering from kidney failure about 6 months ago..obviously, he is not in good health to begin with.
Dad and family live in Massachusetts and my husband and I live in SC, so we rely on family to relay information.  I do not believe we have had an actual diagnosis of "AD".  The family has always called it "dementia".  Is there a difference?  After reading all of the info on the website, it seems that he's following the exact stages of AD, and is at the end stage.  
I have suggested to my husband that we go up and spend whatever time we can with his Dad. I know that Dad may not even know we're there, but at this point, I'm more concerned with my husband and my in-laws and how to best advise them on coping with this.  I do realize that he could be gone tomorrow, or may hang on for many months.

Thank you again for all your help.
Kathy Sniezak
Answer -
Hi Kathy,

The term dementia just describes a state of cognitive impairment. So, its a term for a symptom, not a diagnosis. Its like being told you have a fever - and the first question out of your mouth is...well, what is causing it?

At this point, it probably doesn't matter one iota what the cause is. Earlier in a progressive dementia, it can be important to know what the underlying disease process is, since some of them can be reversed, or at least slowed down. In some cases, medications that help with one cause can actually do harm to someone with another cause (i.e. make their dementia much worse).

It also helps many families to know the cause, since some, like Lewy Body dementia, have very specific patterns and behaviours that go with them, and knowing what to expect can help people prepare.

The two most common causes of dementia are Alzheimer's and multi-infarct (caused by a series of small strokes), but many elderly people have more than one thing going on at a time because of their constellation of health problems. For example, Parkinson's Disease can cause a form of dementia, so someone might have Parkinson's, Alzheimer's AND multi-infarct all going on at the same time. Sounds like your FIL likely has stroke damage at a minimum from major strokes - but he may also be having tiny ones continually.  With multi-infarct, the strokes can be so small and continual, they don't cause typical stroke symptoms like paralysis, but show themselves in declining mental and physical function from cumulative brain damage.

Irrespective of whether he has Alzheimer's, progressive and irreversable dementias end up in pretty much the same place at the end, which is where you see the poor man now.

As you have probably seen, the most commonly used description of the final two stages were developed by Dr. Reisberg and his collegues back in 1982, and they go like this:

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost   

As you say, it appears he is in the last stage. My mother in law lingered in end stage Alzheimer's for approximately two years. As time goes on, there is less and less of everything - they become bedridden, they sleep all the time, they don't know anyone.  Because the brain damage affects muscular coordination, chewing and swallowing become major problems. Most people with end stage dementias also take in less and less and food with time - its not just the physical problem with eating - they just lose interest, as though they can't feel hunger, or at least, if they do, they don't have any idea what it means. It doesn't seem to bother them - but it is hard on a family to accept palliative care and comfort measures only, vs. tubes etc. My mother in law essentially stopped eating about 6 weeks before the end, and no amount of coaxing or careful hand feeding got us anywhere.

We did what your family is contemplating - palliative care, DNR, no medical procedures beyond comfort measures. We kept her very comfortable and dignified, free of pain. We stood by her, we held her hand, and we let the tide go out.  It was a very peaceful, quiet end, with my husband by her side (he was an only child). Whatever was left of her, where ever she had gone to...had just decided enough was enough. My husband regrets his poor mother ever had to go through Alzheimer's, but he does not regret for one minute letting her go. He feels very strongly that we did the right thing in honoring her wishes.

I completely understand your concern - the natural end of Alzheimer's and other dementias can be really brutal on a family when there is any question about what to do. Our culture is really not accustomed to letting death come. We feel we should be doing something, fighting it, throwing every weapon we have it, protecting our loved one. Our reluctance to accept the end is so often more about our own fears than about anything rational. I think you are doing the right thing, heart and soul. It is a real priviledge to be there with them. It doesn't have to be frightening.

The question for all of you is at this point, is there any point to further tests and treatments? You may want to have a frank discussion with the doctor - he is at the point where he is beyond any meaningful recovery or quality of life. As you note, at this stage, he may die soon, or linger for a while, and there is no predicting (although that is also very difficult to accept). So....what is the purpose of the MRI or any other tests and treatments? Is it really just about medical curiousity, with no genuine potential benefit to him? Will further tests or treatments change the outcome? Do you call in hospice now and just stop all of it, beyond loving him, and making sure his last months are comfortable? Only you and your family can answer those questions.

My suspicion is that it will not be long to the end, so yes, if your husband wishes to say goodbye, now is the time to spend time with him, since this is as good as it gets - and he will fade more with time.

I'm so sorry that this is happening to your loved one. No one deserves this - not your father in law, not your mother in law, not your husband. Your father in law is lucky to be surrounded by such a caring family. Its a testament to what a good man he must have been.

Mary G.

Dear Mary,
Thank you very much for your kind words and most helpful information.  It's evident that you are very passionate about this and I thank you on behalf of my family.

I did look up Lewy Body dementia and it raised a question.  I guess I just initally gave you the condensed version of our past 2-3 yrs with Dad since Mom's passing June, 03.  He is in a nursing home now, has been since Feb of this year.  My SIL was taking care of him until it was impossible for her to continue this.  We sold the family house and moved him in to a facility that would tend to his increasing disabilities.

About 2 months after Dad was placed, he began to have "unacceptable" behavior and the facility told us they would need to remove him and send him to a "behavior facility".  Basically, he was becoming a "problem".  He started acting out sexually, making advances towards the CNA's and nursing staff, calling 900 numbers (which led to us removing his room phone), and wandering into other female patients rooms.  They put him on a 24/7 watch.  The order is in for his transfer, but he seems to have declined so quickly that it may not be necessary at this point.  I'm not sure if they've just overmedicated him to have him "behave" more appropriately (this drives me crazy when they say this)and this is what is causing his lapses in and out.
I've researched Pick's disease and he seems to fit right into that.  It was the hardest thing to explain to my in laws that he wasn't "choosing" to behave this way.  They didn't understand why he would "behave himself" when he would be at their houses, but when he was back at the nursing home, he would "act out".  He would strongly argue that he was doing no such thing when confronted.  He had no idea.  He thought everyone was crazy.  What were they talking about?  This is the sweetest, most gentle man you could ever meet.  You can understand how difficult this was for his children to hear.  
Again, I thank you for your help.
Kathy Sniezak

Answer
Well, you are completely right about families having a very, very hard time understanding what brain damage can do.

I think it goes to a very strong cultural belief in the west that a person is somehow apart from their brain - that our personalities and behaviours are something we have total control over, irrespective of whether the "meat computer" between our ears is functioning. We hate to think that who we are socially, morally etc. is so much dependent on wiring. We like to blame people for their bad behaviour - its a sign of not trying hard, its a sign of moral weakness, its just rude and inconsiderate etc. etc. and we just choke on the idea that maybe what someone is doing is the best they can do with an injured nervous system.

It is also so hard for families to accept that this person looks like their dad. It talks like their dad. It has his mannerisms, and many of his memories, and flashes of his personality - but its not the same old dad at all. He's fundamentally different, and all the old assumptions and expectations about what he's like and what he's capable of have to be changed

Pick's disease must be just awful. I've read of many cases of men in mid life, sober respectable citizens and fine fathers and husbands, suddenly fired from their jobs or in disgrace for making disgusting jokes or flashing the neighbours, or other out of character behaviours.  As you probably read, this can happen when they seem quite with it mentally in other ways. How do you explain that to a family? Well, I know he seems mostly like himself, he remembers everything, ....but he took off all his clothes  and tried to grab the minister's wife!

I wonder if that is why they want to do an MRI? Perhaps to confirm that he has a frontal lobe dementia like Pick's? That would certainly explain a lot of the behavioural issues you've had problems with.

We were fortunate with my mother in law in that we didn't see any major changes in personality - she just got vaguer and vaguer. The only thing my husband found difficult as a son was that she did lose her sense of modesty and would hike her skirt to adjust her underwear, undo her blouse and fiddle with her bra in front of him etc. Kind of like a preschooler who just hauls their dress up to their armpits in the middle of the street to adjust their tights with no idea that they shouldn't do that.   

What I did find hard was getting my head around the strangely spotty nature of brain damage - how it is that one simple ability can be gone completely and others that seem more complex be totally intact. Just to give you an example, early in the game, my mother in law lost her ability to understand written text. She could read it to you just fine - so you could write out simple instructions for how to do something like work her fan, and she'd be able to read it all out loud to you no problem - but she couldn't follow the instructions at all. I'd never really understood that reading and comprehension were such totally separate brain operations. I was truly exasperated with her before I had my lightbulb moment. "Dolli! We've been over this 11 times. What does it say right here? You just read it to me out loud! Turn the knob to the right until it clicks!"

She also couldn't understand sequences at all - that 1 oclock came before 2 oclock, that February was after January, that if it's Tuesday, a week today is also Tuesday, or that 10 dollars was a bigger amount than 5 dollars  - and this was going on at a time when you could have yacked with her on the phone for an hour about happenings in the world and not thought there was a darned thing the matter with her. How do you explain that to relatives? She seems like herself, but she can't get to her appointments or find her TV program in the guide because this seemingly bright lovely lady can't figure out that 22 is the number before 23???

Anyway, hang in. Any kind of dementia is a huge challenge for a family. Losing someone to a plain old physical illness is a piece of cake compared to losing them by inches to a brain disease.

Mary G.