Q: Since my mother, now 71, was diagnosed with Alzheimer's two years ago, she has declined steadily. At first, my father was able to take care of her with part-time help from me, but as time passed, she became too much for him to handle. And when he suffered a stroke and then a fatal heart attack, Mom's care became my total responsibility. I have her power of attorney and am an only child.
With my husband's agreement, I stopped work and moved her in with us; but I soon found that I could not meet her needs, especially when she became aggressive and, on occasion, physically abusive to me and our teenage son. We never knew what was going to set her off, and it got to the point that the stress was causing problems in my marriage and with my son who could not bring friends to our home. Even medication did not help.
So my husband and I decided to try to find a suitable place for her to stay, and have continued to strike out. This is why I am writing you.
Even though Mom receives nearly $3,500 each month from Social Security and my father's pension, and has a home valued at $125,000 and investments of $85,000, she has been denied admission to two nursing homes and three residential care facilities. I have learned that Medicare will pay nothing for her care. And even if she had no money, we are told that because she does not need "nursing care," Medicaid would not provide for her. It seems that people like her are slipping through the cracks. We as a family are having a very difficult time coping, and we know that she is miserable. With all we read about care for the elderly, why do we find ourselves in this situation, and what can we do?
A: Our health-care system is not prepared to deal with the estimated four or more million Americans with Alzheimer's disease and other forms of dementia, let alone those who have become aggressive. And with estimates of nearly four times that number by 2050, the future does not look bright unless there is a paradigm shift in the way care is provided.
While nursing homes were designed to care primarily for people with chronic, long-term medical problems of the body, not the mind, some estimate that two-thirds of the residents in these facilities suffer from some form of dementia, and a large percentage of them are very challenging to care for. The more challenging the care, the less likely an individual will be admitted. And if admitted, the more likely the facility will discharge the disruptive individual for a myriad of reasons, not the least of which is potential liability should another patient be attacked and hurt.
According to studies we have read, aggressive and violent behavior among Alzheimer's patients could be caused by a combination of paranoia, agitation and depression that sometimes come to the forefront as the disease cripples the mind and distorts one's view of events. For example, a person with Alzheimer's disease may believe he or she is being attacked, and acts out accordingly, if someone comes into his or her room. While aggressive Alzheimer's patients are not willfully causing harm to others, their conduct is a challenge that many facilities are not willing to take on.
While there don't seem to be statistical studies that outline the extent of this problem, as the number of seniors grows and as medical technology results in longer lives for those with this illness, the trend is expected to get worse.
Taking the NextStep: To be perfectly frank, we have not been able to find a solution for you. We ask that our readers provide us with any solutions that may be available, and we will be happy to print them in upcoming columns.