Building supports for those who support- a place to start. I am seeking out others with loved ones identified with Early Onset of Alzheimers and other forms of dementia. Let's stand and be counted.
My name is Lyn McLaurine. 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 journey has been long and hard. We have survived and we have learned much. My hope is that this can become a place for spouses, significant others, children, family, and friends that have a loved one going through the transitions of Alzheimer's and other traumatic brain disorders. Early Onset of Alzheimer's and Domestic violence: Hobson’s Choice Our experience was a nightmare. Even though I worked hard at keeping our family together, Bill was deep into his Marine Corps experience and his 14 years’ experience in Corrections. He was heavily into control. One of his methods to remain in control was to expect us to agree with his philosophy. Disagreeing was made a very uncomfortable experience through verbally and emotionally manipulation towards my son and me throughout our marriage. The need to control grew into paranoria as the Early Onset of Alzheimer’s condition became more and more evident. The disease 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. The need to be overbearing must have been his coping mode for his scattered thoughts. At the end of homecare, (Christmas Day to be exact) 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.During this time 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. Although I had arranged on neighbors to check on him, made sure he had groceries and people to provide meals each day and laid out his medicine for him. The D.A. continues to threaten to send me, a domestic violence victim, back to my abuser under penalty of a felony charge. The potential of charges still hang over my head for the next 5 years.
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.
Come. Share your story. Tell us your ideas. Let's stand up and offer each other support. This is a wonderful place to start to help others. Maybe we can make a difference.
lynmac1 good luck with your group. My daughter is a memory care specialist and is presenting at seminars all over the country in issues with FTD and family advocacy. No one else it going to do it for us.
There are times when I am absolutely speechless over the things that happen to people. Lynmac1, this is one of those times. I wish you strength and courage.
lynmac1--as the wife of a man with EOAD, I am sympathetic to your cause. Although we were fortunate not to have violence enter into the picture, my husband's Dad, also an EOAD sufferer, was violent. So I know have heard from my husband and his sister what it felt like to live in fear of a loved one with dementia.
That said, I'm a little confused by your use of the term "mentally ill" and the statements about the government cutting back on care for mentally ill individuals. As far as I know, AD is considered a physical (organic brain) disease and is different from mental illness. Yes, troublesome psychiatric symptoms are common, but they are caused by a progressive, terminal disease.
In my experience, a good number of AD sufferers are hospitalized in geripsych units (either voluntarily or involuntarily) when symptoms become to difficult to manage at home. My husband had two such hospitalizations in 2011, which resulted in a successful adjustment of his medications. The costs incurred were paid by Medicare and private health insurance. After that, I moved him to an assisted living facility (private pay). If a family can't afford a nursing home, the Medicaid program will pay for care, once those qualifications are met.
I agree that more support is needed for families and that many don't know where to turn. I think it's critical to build a good support team, including doctors who specialize in treatment of dementia patients; social workers; the Alzheimer's Association; adult day programs; home health agencies, geriatric care managers, etc. Guidance exists out there if one is able to build this team. Perhaps your husband would qualify for some services because he was in the military--I have no expertise with that, but others here have quite a bit of experience.
You are in a very tough position and I hope that you're able to find some help for all concerned.
If he abused you why not press charges and let the state deal with him? He might get the help he needs then. Or how about seeing an attorney to see if he can be a made a ward of the state? You don't mention consulting an attorney -there has to be recourse regarding the DA threat.
Dear Lyn, I am not in the onerous position as you are, however, in my specific case; it is my Wife Renee who has EOAD.
I have read may books, articles and have periodic contact with Alzheimer's Associations in: South Africa, USA, Ireland, UK and Australia, just to keep myself aware of the latest research and learned commentaries.
Sounds like a VA Psych Unit would be better than what either one of you is experiencing and I recommend the VA as a last resort having dealt with them with the ex-husband. Sounds like he needs serious medication and I don't recommend that either, but there comes a time!
Lyn, something has to be done to protect bioth of you. My experience has actually been very different from yours. DH hit me, I called 911, police arrested him on a domestic violence charge even though I told them he didn't understand what he had done. They put hm in jail and then took him to the local hospital for a mental health interview and involuntarily committed him to a psychiatric facility. Have you spoken with your local police/sheriff's office to find out their obligations with domestic violence vicims and how they handle a spouse with dementia who has been physically/emotionally abusive?
The police filed a domestic violence claim on my behalf, instituted a temporary restraining order for 3 days and did everything they could to persuade me to file for a permanent restraining order.