Expert: Mary Gordon - 10/3/2010

Question
dear Mary,
    i have wrote to you so many times about my mom and my husband.my mom is in stage 7 of ad my sister and i make all decisions concerning her well being . we stopped all meds except for constipation she has a problem going to the bathroom .she has been inconstant for a long time now. she is leaning to the left and fills cold to the touch all the time she is still walking around but that all she does she will eat soft foods but she must be feed. is she near the end and is the leaning lewy body?
 i also have a question concerning my husband he has congestive heart failure he is 78 years old he spent a week in the hospital last month he lost 16 pounds but now he has already gained 9 pounds back he is on 60mg lasics and he is also onaldactone 25mg.i was told that every time he gets fluid in his lungs the doctors can only get 2 liters out and the rest stays there and he will go into chf faster and more often, his memory is getting really bad he keeps asking what time of day it is (morning or night) he is getting up 4 -5 times every night .he will get dressed for work and get upset with me when i tell him its night time . i seen this same stuff with my mom so i know im in for a rocky road .thank you for being here for all who need you .
       sandy  

Answer
Hi Sandy

Gait problems, and balance issues are common in many dementias. Irrespective of the cause, as brain damage advances, the problems get worse and worse until the person looses their ability to walk. Issues include impaired physical coordination (ataxia) which starts to show itself in a shuffling gait; slowness of movement; and an altered posture such as the leaning you are observing.  

When they are leaning significantly, it is sometimes called Pisa Syndrome - although you will see that described as rare, it really isn't. It happens to people with various kinds of brain lesions, Parkinson's disease (which causes a form of dementia itself), Lewy Body dementia, in Alzheimer's, and as a side effect from certain neuroleptic drugs or cholinesterase inhibitors (a class of drugs used to treat AD).  It is a stooped posture with pronounced leaning, generally forward or to one side.

The real danger for your mom is a fall, since she will be very fragile and a fall might result in broken bones (i.e. hip), which often leads to a death spiral in the elderly.

As to her feeling cold, elderly people with AD often lose most of their body fat, and have circulation problems. This results in problems regulating their body temperature - and this is why nursing homes are often kept warmer than you or I would find comfortable.

If your mom is still walking, she is not in the very end just yet. Survival time is complicated - and has a lot to do with the overall health of the individual.

My mother in law died from the dementia itself, and she survived a full two years after she stopped walking entirely. Generally, the last stage involves the complete loss of walking. They start to sleep more and more and move less and less. Essentially, they spend their final months helpless and propped up in bed or in a chair, or they will fall over. They are helpless and weak and lose their ability to talk other than one or two words or making sounds like grunts and moans. They have to be spoon fed carefully, they are generally unaware of where they are or who they are with. It's really sad. They lose more and more weight, eat less and less and spend their days staring into nothing or dozing. Eventually, they stop eating and drinking, eventually lapse into a coma and pass away.

Quite often some other health issue will carry the person of before that point. For example, were your husband's dementia to advance, his heart issues would likely cause passing long before the end stage of the dementia itself. After all,  most families decide it is not worth putting a loved one through scary or uncomfortable tests and procedures to diagnose or treat health complications. They decide it isn't worth it or the kind and loving thing to do, given that all that does is extend suffering where there is no quality of life.  

I'm thinking of you.

Mary