where we are

From here:

Moderate dementia: The ability to perform simple daily activities (basic activities of daily living; eg, bathing, dressing, toileting) becomes impaired. Patients cannot learn new information.
Normal environmental and social cues for time and place do not register, increasing disorientation. Because patients cannot effectively use these cues, they may become lost even in familiar surroundings (eg, they cannot find their bedroom or bathroom). Patients remain ambulatory but are at increased risk of falls and accidents due to confusion and poor judgment.
Personality changes may progress. Patients may become irritable, anxious, self-centered, inflexible, or angry more easily, or they may become more passive, with a flat affect, depression, indecisiveness, lack of spontaneity, or general withdrawal from social situations.
Psychotic symptoms may occur. Significant paranoia (eg, specific, often persecutory delusions; generalized suspicion) occurs in about 25% of patients. The most common delusions are beliefs that people are stealing and that a spouse is unfaithful. One particularly poignant delusion results from loss of self-recognition in mirrors; some patients with this delusion worry that strangers have entered the home, but others enjoy the “visitor’s” company. Patients often misidentify other people at this point (eg, thinking their husband is their father or their daughter is their wife).
Behavior disorders may develop. Wandering can be a significant problem, particularly if patients are trying to return to familiar surroundings that no longer exist. Patients may become physically aggressive or agitated or act in sexually inappropriate ways. Sleep patterns are often disorganized.

I think it would be a easier in many ways to live with, and take care of, someone with a physical illness. At least you can talk with them, have them tell you what they need. When you live with someone with dementia, your world becomes an irrational hell.
“Shit! Shit!”… she shouted as I walked her into the eye doctor’s office this afternoon. She had been agitated on the ride in, and I didn’t know if that was the problem or if she had to go to the bathroom. Apparently it was both.
I have found someone, through a volunteer organization, who will come and keep her company for an hour or so once a week so that she can at least feel that she has visitors. She always does better when there are other people around. I’m going to take the volunteer to lunch after Thanksgiving so that we can get to know each other. And then I’ll introduce her to my mother as one of my friends. I’m hoping that they take to each other. It will give me a little break, but mostly it will give my mother something to look forward to.
We know that she will only be getting worse and worse. And we only have this to look forward to:

Severe: Eventually, patients cannot perform the most basic activities (eg, eating, walking) and become totally dependent on other people. Memory for recent and remote events is completely lost, and patients may be unable to recognize even close family members. The ability to walk is variably affected in different dementias but is usually lost in the late stages; patients may become unable to move even while in bed. Patients may become incontinent. Reflex motor function (eg, ability to swallow) is lost, putting patients at risk of dehydration, undernutrition, and aspiration (which increases risk of pneumonia). The combination of immobility and undernutrition increases risk of pressure ulcers. Eventually, patients become mute.
Total functional dependence usually requires that patients be placed in a nursing home or that similar support be implemented in the home. Conscientious nursing care may delay complications (eg, dehydration, undernutrition, aspiration, pressure ulcers). Because many patients cannot describe symptoms to a physician and because elderly patients often have no febrile or leukocytic response to infection, health care practitioners must rely on experience and acumen to detect infections whenever patients appear ill.
End-stage dementia results in coma and death, usually due to infection originating in the respiratory tract, skin, or urinary tract.

That has to be a terrible way to end a long life.

3 thoughts on “where we are

  1. When I was living with my mother in a senior citizen apartment building, my next door neighbor was found in her favorite chair, dead. She died while taking a nap. That is not a bad way to go. It’s actually one of the best. No agony, no pain, just a quiet slipping away.

  2. You’re certainly coping with a difficult situation for a caregiver. Yes, I know, that’s the understatement of the century. I’m sure the unpredictable behavior to which your loved one subjects you, steadily strains your patience, even when you are at your best, being most caring and compassionate. Maintaining that supportive attitude can be literally impossible at times in the face of contrariness and rejection.

    I am so glad you expect to have respite with your relief helper. I can only wish it was possible for you to have regular relief more frequently, that others could make that contribution to your loved one’s care. Most importantly you need that support for your own mental and physical health to buoy up your own spirits.

    I’m sure I’m only writing what you already know, that you feel somewhat frustrated by not being able to carve out more time for yourself. Just want you to know I “hear” you. At least, based on the descriptions you posted here, you understand what is happening or may occur in the future. Understanding is not always enough. We can only hope that somehow your loved one escapes some of those behaviors for her sake and yours.

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