things take time

A year ago, I wrote about my mother deciding that it was time for she and my father to move into assisted living. What I never reported was that she changed her mind within forty-eight hours. She does that a lot.

In the past year, she, with the help of my brother Charlie, has tried out a number of in home help arrangements, lasting for varying amounts of time with various degrees of success. During the summer (2008), after several months of contact, her physician decided to bring in a psychologist to evaluate her. The resulting diagnosis of mild to moderate dementia shook my mom to her core.

Before the test my mom's grasp on reality and her reasoning ability had been steadily and obviously deteriorating for sometime, but she remained unshakably confident that she was right and the whole rest of the world was wrong. This made her seem far more competent than she actually was. When she learned the results of the test, her first reaction was denial, then anger, which now alternates with bargaining and depression and to anger and back again to depression (Kubler-Ross new what she was talking about when she described the stages of grief). Unfortunately my mother has not yet moved on to acceptance.

The insecurity and uncertainty engendered in my mother by hearing a diagnosis of "dementia" has changed her in ways that are both sad and frustrating. While she accepts physical help with the household and care of my father, she fiercely resists attempts to help her with decisions all the while complaining every day to me (during our daily phone call) about being overwhelmed by those decisions.

Three weeks ago, shortly after a shake up in their home care arrangements, she contracted a cold. The cold got progressively worse, and day after day, both I and her new home care worker tried to get her to agree to call her doctor. She refused to tell Charlie, and refused to call the doctor because "she [the doctor] would just call Charlie." A week later the cold turned into bronchitis, another week passed and it became pneumonia. She finally recognized she needed help, but refused to do anything. [She is still technically considered competent and able to make her own decisions.] I contacted Charlie, who immediately got her care worker to get her to the emergency room where she was admitted to the hospital.

This has been a really bad week for her and by extension for Charlie -- and to a much lesser extent for me. Within a day of entering the hospital she began to demand to be taken home, loudly, repeatedly to anyone who would listen. She refused breathing treatments and any oral medications (for some reason she never resisted the IV with the antibiotics). She kept getting out of bed and getting dressed, and threatening to get a taxi and go home. She was completely irrational, claiming that she was not sick, that the pneumonia was "a dream" and not real.

Charlie dealt patiently with her, returning to the hospital several times a day, to help the staff deal with her. She was angrier than I've ever seen her in all my 58 years as her daughter.

The antibiotics have done their work, and the pneumonia is gone. She has been moved from the hospital to a skilled nursing facility, nearby, and she has become calmer and more rational. In a few days she will return home, where Charlie has arranged for 24 hour care with the pleasant and competent young woman currently caring for my dad. Charlie will give her a break every other weekend and take over for a few days.

Perhaps this is the time to move to a group care situation, but Charlie is justifiably concerned about the costs. My parents are just affluent enough not to qualify for assistance, but their resources would probably run out with in a couple of years in a group home situation, requiring yet a whole new set of arrangements. And Charlie listens to my mother and her overwhelming fears of living in a group home situation.

There is little I can do, from 2500 miles away, but listen, provide encouragement and support.