Time has passed since I started this blog. Today I’m a 52 year-old married woman with a 57 year-old husband who has Early Onset of Alzheimer’s Disease, at an advanced stage. Our son Jack is now a 17 year old young man. Despite my hard work to attempt to keep our family together, the disease has progressed significantly. For Bill, as the Alzheimer's progresses, the survival skills he acquired from his time in the Marine Corps experience and his 14 years’ experience in Corrections have mushroomed into a warped, vicious,paranoid personality.
He was heavily into control. He was often verbally and emotionally abusive of my son and me throughout our marriage. The Early Onset of Alzheimer’s condition exasperated the dark side of learned behavior associated with being a Marine (there’s no such thing as an Ex-Marine… once a Marine, always a Marine) and the negativity associated with working in a prison environment.
This past December (Christmas Day to be exact) Bill In a short four-week period, he quickly escalated to violence and then to threatening my life with knives. I was scared to return to the home with my son, fearing we will be beaten or killed. My experience lead me to a nightmare experience where I learned firsthand how governments have cut back on mental health funding and are forcing families to treat violent mentally ill family members at risk to their own health and safety, sometimes under penalty of criminal sanctions. I’ve found it prevalent in my home state of Kansas and suspect it is prevalent nationwide.
With Christmas approaching, I decided to try to take my husband to see his aging parents, noting the changes and knowing this could be the last time I would be able to travel safely with Bill. I had him convinced, so I thought, that I would be “escorting” us in the car since he was no longer to drive. Two weeks before we were to leave Bill began to refuse to take his medications for his condition.
On Christmas Day Bill woke escalated, announcing he would be driving the car or taking his own car to Cincinnati to see his parents. I have no power of attorney to force him into care, but I was able to get him admitted to the Psychiatric Ward in the county facility. They discharged him three days later, one and a half days after they started him on a heavy psychotropic. The Psych unit contacted me, forcing me to take him home even though I was very verbose in indicating I was unable to care for him. The hospital refused to assist us in finding a place for him to be monitored until he was stable, indicated he was stable on the ward, and was told by the social worker on the ward that they did not want our bill to get too high, as we did not have insurance. It was his experience that most people in that scenario do not follow up with a medical plan because they cannot afford to.
We made too much money to qualify for assistance on his Social Security Disability and my unemployment and part time online teaching. Those are our only sources of income at present. We had no other resources. I was repeatedly told I had to take him home and I would be provided a crisis plan that I would implement The police were to be called and he would be escorted to Horizons for an evaluation.
Bill was released. My mother stayed at our side for three days. On the third day she decided to go to her home to take a break. My friend arrived to cover for her while she was gone, again, because Bill continued to be on edge starting the day we brought him home from the hospital.
Within the first hour of my mom’s temporary departure, Bill began to show agitation towards me. This friend, Melany Ketchum, saw Bill begin to try to intimidate me, threaten me and push me, trying to get the car keys (he’s not allowed to drive). She was horrified. She called the Reno County, KS Sheriff’s Office to get help.
The Sheriff arrived, and as per the crisis intervention plan provided by the hospital when I was forced to take Bill home, The Sheriff contacted the county mental health facility and the crisis center refused to see Bill for an assessment per the instructions of the physician that discharged us, indicating Bill was stable on the unit. The Sheriff indicated that Horizon’s Psychiatrist referred to our situation as a family matter and not a medical matter since the issue was related to the Alzheimer's.We we refused even the opportunity for assessment.
Terrified to stay since the Sheriff was called and help was refused, I asked the Sheriff what my recourse was. The Sheriff indicated the only other option was to file a complaint. Bill would be taken in and transferred to a state facility for evaluation. The Sheriff’s officer took my signed statement. In an afterthought he contacted his supervisor. His supervisor advised him not to follow through. The Sheriff refused to file my complaint or escort him to treatment at the county mental health facility. In fact, in following up I learned my statement was never filed with the sheriff’s record office. In addition, I was refused requests for legally required wellness checks or assistance when directed by crisis agencies or when I would receive calls from Bill in various frames of emotion and instability.
During this time, to my knowledge my husband was never declared legally incompetent. Bill has always refused to allow me to become legal guardian/conservator. I learned two weeks during this crisis period by accident that Bill has been determined to be incompetent during his stay at the county hospital by the providing psychiatrist that released him. (I was informed by the billing department at Horizon's when I was attempting to get records to try to access help for him.)
No one, in all my attempts to get him and myself help discussed domestic violence with me or acknowledged that I was even a victim of domestic violence. I was made to feel like it was my fault that I couldn't control my husband and his violent behavior, if they even believed it existed. The county hospital forced me to take my abuser back, even calling the state on me. They refused to assist me in finding long term care for him, forcing me to take him home.
I've been to state, federal and local agencies and not one of them can help us either because our meager income is a hair too high or they are not willing to provide information. I approached the local and national Alzheimer's associations, the Department of Aging, on and on and on.
None of them even told me, as a domestic violence victim, how to get help or even a temporary protective order. Only a family friend who had been through Department of Justice domestic violence training recognized it and helped me get help.
One agency, the V.A. Hospital in Wichita, took my situation seriously and advised me to not return home, that he would try to lure me back to do me harm. I've followed their advice.
To add to our crisis, I received a letter that I was to be investigated to be charged with a felony for not taking care of a dependent adult by the District Attorney. The District Attorney’s office became involved when I refused to go home to my abuser. I had been back and forth to the house over those several days on a daily basis. I had arranged on neighbors to check on him, made sure he had groceries and paid a neighbor who volunteered to make certain he was eating help with his medicine. It was as if that wasn't exactly what I was all ready doing: trying to get help for Bill. Devastated, I continued to contact agencies, friends in social fields, legal aide, and so on, plus checking on him to be sure he had food, etc. Every phone call I made I stressed my concern for his safety while being left alone.
The next blow was being served with papers for divorce and a restraining order. A well-meaning friend and the friendly neighbor that volunteered to help (who I recently learned pressed the charges of abandonment) took Bill to an attorney to prevent me from helping Bill. No guardianship, abandonment charges, and a restraining order. Go figure.
Long story short, I received help from a fabulous attorney- Shannon Crane if you need a referral- She has walked me through finding a temporary guardian. I was allowed to pick the nursing home for Bill - Prairie Sunset out of Pretty Prairie Kansas, which is within 20 minutes from us. Jack and I are back in our home. We have lots to deal with in terms of healing but we are ok.
The D.A. continues to threaten to send me, a domestic violence victim, back to my abuser under penalty of a felony charge. Possibility of charges hang over me for the next five years.
Throughout all of this, I have tried to obtain a list of facilities in Kansas that will take violent Alzheimer’s patients, but no one, at the state, county or even mental hospital level, will provide a list to me. Even the state mental hospital won’t take such patients. We make just a hair too much for the V.A. to assist us.
One of the many failures in the system available to individuals with mental deficiencies is the government cutbacks experienced here in Kansas. Kansans are not alone. Are Governors and the state legislature realizing the after affects that these cutbacks have abdicated on providing adequate and basic mental health facilities?
Where is justice when criminal laws and sanctions on terrified family members whose loved ones strike out against them with violence, to imprison us in abuse and endanger our health and lives, all to save the state money? A family friend told me that the state has given me a Hobson’s Choice – return to my abuser or go to jail. No one, he explained, should be forced to do herself injury under penalty of criminal law.
What I’ve learned is that I’m not alone. Whether from a stranger at the SRS office telling me that she is going through the same situation or learning of the abysmal, antiquated definition of domestic violence that the Sheriff’s office and D.A.’s office use in this county that everyone in the county seems to acknowledge, women are being forced back into the hands of their abusers. Equally troubling is that violent Alzheimer’s patients are left without adequate care when family members are unable to care for them and can’t afford to put them in expensive nursing homes, or even find lists of such homes that provide such care.
I suspect that this problem is nationwide. I would like to help publicize this issue. Please help us help all the other spouses out there suffering in silence, not sure what to do, not sure where to turn and facing abuse at the hands of a loved one who is mentally ill.
