I am brand new to this site and don't know if this topic may have been explored or not. My 87 yo dad is home with my son caretaking 24/7 and my 85 yo mother is in long term care.
My mother has always had mental/behavioral issues. She was finally prescribed an antipsychotic about a year and a half ago. Now her mood is typically quite pleasant. With dementia, she requires nursing home care. At the home she continues to exhibit certain behaviors and languishes in bed 95+% of the time. They get her up for breakfast which she eats robustly as she is famished. She goes back to bed. They will get her up for lunch (unless she refuses) but she eats that inconsistently. Actually when she refused to eat the prepared meals, they were feeding her peanut butter and jelly sandwiches daily. She is up for 30 minutes after "lunch" to sit in the hallway near the nurses' station. My mother has a history of paranoia, dependency and isolation. Apparently, she will scream in the hallway or in group settings and demand to go to bed claiming fatigue and/or pain. (We learned this just yesterday). She is back in bed all afternoon. Bed at 6:00. Staff are supposed to get her up for dinner but often she "refuses" (their word). She seldom eats any significant portion of dinner. Although my mother underwent a complete swallowing evaluation at the nearby hospital, the speech therapist at the facility insists she requires ground food and thickened liquids. My mother can and will cough on command for attention. The speech therapist claims she will "aspirate". She never has. She did contract pneumonia over a year ago from a bronchial infection that was going through the place and during one meeting the speech therapist tried to link that bout of viral pneumonia to aspiration. The result was to have my mother undergo the evaluation at the hospital. The hospital evaluation says she does not need a special diet other than suggesting she might take a thickened liquid if she is fatigued. The ground food is completely unappealing. I believe I would probably refuse to eat it also. Thickened water is well...disgusting and she takes in a very limited amount of fluids as a result. In just the last 30 days she is down 5 lbs and has not been ill. Since her admission 15 months ago, she is down 12 lbs. My sister and I each bring her in a well balanced meal weekly. My son brings her out of there once a week for most of the day and she eats exceptionally well...no thickened liquids and no ground foods. If we were not feeding her, we believe her weight would be even less but of more concern is the lack of nutrients she is consuming. We have observed her coughing/gagging episodes to be behavioral. Not only can she stop but when told she may not be able to have "real" food she will readily stop. We understand it is easier for the facility to give her ground food. It can be more or less shoveled into her more quickly. (My mother is capable of feeding herself but likes to be infantalized with spoon feeding.) Granted having my mother feed herself takes longer and her hand/eye coordination is certainly not like it used to be so there is more spillage. The primary issue appears to be liability on the part of the facility. My mother's quality of life is diminished, her health is at risk but the nursing home is admittedly covered legally.
With this same cycle is the nearly total lack of stimulation being provided to her. We have repeatedly asked for the TV to be put on for some background noise and perhaps to spark some interest. It is not. They ask her. She says no to everything like a 2 yr old and the staff then fall back on having to "respect" her wishes. My mother has been deemed incompetent. She has a court appointed guardian. The facility feeds her PBJs, have her in diapers (she was not incontinent when this began) and bed bound but continue to ask her open ended questions which result in refusals consistent with an oppositional defiant disorder. My mother has an extremely dependent personality. She never drove a car, socialized, worked perhaps 10 yrs of her life and relied on my dad until June 2011 when he was seriously injured in a car crash (he was driving).
My sister and I attend the care meetings with the most recent, yesterday ergo my inquiry today. My mother has medication reviews by the mental health people but no therapy which she would refuse anyway. She needs someone to work with her on these behavioral and personality traits. She is capable of so much more and it is distressing to see her literally waste away. When she is out weekly; she is engaging and interacts well with us, eats very well, shows no fatigue and does not complain of pain. My mother sits up in her wheelchair (she refuses to walk) for sometimes up to 8 hours at a time. This has all been communicated to staff and her guardian. What can be done? Are there geriatric behavioral specialists who could develop an action plan? Ideas?