Six months later...

Wow. It is so difficult for me to put into words what all has happened over the past few months. For one thing, when I try to think back it is all such a blur. The divorce Bill requested is in limbo because of his cognitive decline. So, thousands of dollars later... the courts deemed me the guardian and conservator. My head is still swimming with all the paperwork and demands I have to fulfill. I begged my attorney to find another guardian, but they pretty much gave me no choice in the matter. It's taking me some time to heal. I get mental blocks when I try to weed through all of this, all of the legalities and paperwork demands absolutely make me cringe. I don't even know where to start! These issues, however, only make me realize how far we've come. The mind chatter that drives me crazy at night is getting easier to redirect. I realize all that chatter is the voice of fear, and I am learning how to step into that fear, melting it away. It is the strangest spiritual journey I could have imagined. I hope I learn and learn well from all of this. I hope I can help others find their wings and fly.

Bill continues to live in the Prairie Sunset Nursing Home in Pretty Prairie Kansas.http://www.prairiesunsethome.org/ As you can see, he wears a staff name tag. They have allowed Bill to maintain dignity by allowing him to believe he is part of the staff. With his Masters in geriatrics, it has made his transition way easier than it could have been. When I was faced with finding a unit for Bill, I figured I would have to find a lock down unit. His desire for independence and his lack of comprehending how dangerous his actions are made me an inferior care giver. Oh, it was out of my hands. I've often compared it to living Fifty First Dates in the nightmare version over and over. By the grace of God, the doors opened to a facility who makes him feel useful, needed, and valuable.

Bill has difficulty recognizing Jack these days.His memories fall back to younger days. This is a very difficult situation for Jack. He loves his dad and it is difficult for him to face. He's a tough kid, though, and I am very proud of his resilience.

Bill forgets he divorced me. He gets pretty upset with me at times because he of course wants to drive his car, come home like others when he is off work, and he of course wants to see his dog, Maggie. On really bad days he asks his "boss" (Social Services Director, Michelle) to call his attorney. Bless his heart. I hope I have the kahoonas Bill shows when it comes to survival. He can still talk you into next week, very authoritative too, I might add. He can make you question if he actually does have Alzheimer's with his verbal skills. The things he has forgotten are things like how to drive a car, how to tie a shoe, how to thumb wrestle or play checkers or tic tac toe. Those things aren't important to him, however. He has adjusted well, and proudly shows his new velcro shoes.

Prairie Sunset has given me some real serious peace of mind. I still fight feeling like a failure, not being able to care for Bill until his dying day. The safety of others has to come first, however, Jack and I included. I appreciate your continued prayers. Hugs and kisses, everyone. Lyn

Bill, May 2012

Bill goes weekly to help his bosses Michelle and Holly to get supplies for residents.

Jan's Story

Crisis- Hobson’s Choice – return to my abuser or go to jail.

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.

Cat hunting is Bill's latest thing. He used to feed squirrels to draw them to the house, but has moved up to the house cat. This pretty much sums up portions of my day on the home front.

So sorry for taking so long to write

Hi, everybody. So sorry for taking so long to write. I have been going through a little shell shock. Thank God for all the information out there on helping caregivers from falling into self-destructive behavior. It is easy to get mentally wrapped up in things that have no logic or reason.

The best thing for me to do to explain where we are at is to share this information with you. We've been here for awhile, and I suspect we are moving towards the next stage.

Stage 6:  Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease)

This stage is where really significant personality changes can emerge. That sweet person you used to know suddenly is combative, volatile and possibly violent at times. The Alzheimer's Association says that at this stage, people lose "most awareness of recent experiences…as well as their surroundings."

People in this stage can be very inventive, when trying to outwit the caregiver. They are also prone to wandering, so keeping them safe can be a challenge. They've been known to find ways to unlock several locks on doors and to enable a supposedly disabled car. They are not dumb, folks. This isn't about intelligence.

Caregivers have been known to remove and hide car batteries. People sometimes get alarms installed that are meant to let you know if someone is breaking in, but they get them so they know if their Alzheimer's afflicted loved one is breaking out.

During this wandering prone stage, an Alzheimer's afflicted person must be watched carefully, as an unfortunate number of them have, literally, been stranded out in the cold. There are alarms and ID bracelets and other forms of protection on the market that can help keep track of, or find, someone who is wandering.

Stage 6 is also a phase where, according to the National Alzheimer's Association, "(People) lose most awareness of recent experiences and events as well as of their surroundings."

They often don't remember their own histories and can forget the names of people they love (though they usually recognize faces).  They need help dressing and toileting. This, too, is the stage where the sleep cycle is greatly disturbed for this person (to say nothing of the caregiver's sleep cycle).

Late day/early evening confusion, often called "sundowning," where the person is agitated  and confused  is thought to have to do with light and/or activity changes that trigger the Alzheimer's patient's need to do something important, but they don't know what (perhaps it's time to "go home from work?"). Whatever the cause, this is a difficult time of day for many caregivers and dementia patients.

Stage 6 is also the phase where the caregiver will witness more paranoia or suspicions ("they are trying to steal my dentures"). Hallucinations are not at all uncommon, and compulsive behaviors such as picking, tissue shredding, scratching and hand-wringing can occur.

This is often the phase where the person with Alzheimer's may need to be moved to a secure environment where they are safe and the caregiver can get some relief from the 24/7 job of caregiver (often that occurs earlier).

As you can imagine, I am crazy busy most of the time between teaching, picking up after Bill's tinkering, and keeping an eye on him. He loves to screw with me and hide and stuff. Crazy. In fact, the entire article paints a clear picture for us. 

I have loved seeing so many of you recently. I love you all and am so glad to have you there with me in heart and soul. I get sad and lonely when things get crazy. If hugs can be packaged and mailed, put me on your mail list. If not, alcohol works. Jus' kidden...

Hugs,

Lyn

Hi friends and family

Hi, everyone.

It is time to update my journal. I don't even know where to begin. We've been keeping really busy.  I've been muddling my way through paperwork and red tape for the VA. Past income makes us ineligible, so we have to request consideration for an emergency status. We will be eligible, but there is a process. There are several lengthy forms involved and I have to write out details of the past two years, including dates. I think I have gathered most of the required material. Maybe one day I'll turn it into a book, lol. I've got a great partner to keep me on task: My mom! She's helping me keep the momentum going in all areas: resources, supports, paper work, keeping the contractors and insurance transactions going, getting insurance lined up for all of us, etc. So much to do!!! Mom cracks that whip. Bill will see me slacking, and he narcs me out to her, too. Jeeeeez Louise somebody wake me up. Getting it from Lucy and Bill slightly interupts my perfect little cocoon. Negative waves, man....



Bill is very busy, which keeps me on my toes all the time.  I won't lie. Some days are pretty tough. I answer the same questions over and over, am questioned about why I keep things from him, it gets pretty tiring by the end of the day.  I have to get better at this. Bill picks up on my frustration and it makes him feel really bad. He starts apologizing, and I feel about an inch tall. I am better than that.  I can be such an emotional addict. It is probably my number one priority focus in my spiritual life, the need for balance.  I realize where I'm at, Miss Grumpy, and then I stop to listen to what he is going through. He talks about not being able to find his way from room to room. He has to stop, get grip, and work his way through it. And it happens over and over and over, constantly. He fights panic attacks on really bad days. Those are the wacko days for certain.

Bill went for several weeks where his grooming was getting pretty awful. We are swinging back into the opposite, thank you Lord. He finally let me trim and shape his beard a couple of weeks ago. From there he went to town. Yesterday he came downstairs clean, shaved, and wanted me to clean up the back of his neck, etc. Wow.  He looks twenty years younger.

Once we get Bill established with the VA, we will get Dr's established. Back in Michigan, the doctors told us it is important to keep busy. I try to keep him pretty busy. It is hard to get him to go somewhere for very long, so I love it when the friends drop in . We love it when you stop by to see us! We were walking through a book store and Bill ran into the original Warden from the late 80's during his career at the prison. He enjoyed that. We also celebrated Harvey's 70th birthday with his family and friends. We saw several of Bill's past co-workers from the DOC there. It was nice to see "the good ole boys" again. Oh, and in case you don't know (shhh, this is top secret.) Harvery is the real Santa.

This is Jack and Harvey- I mean Santa on one of his many visits. When Jack was in about the third grade a kid told him that Santa wasn't real. Jack looked at the kid and said, "I'm not taking any chances. I've seen him drink beer with my dad."

We also got to go to the  Miller's famous Bike Fun Run. George started it years ago. He would be happy to see generation after generation of family, friends, and those that "show up" carry on with the races, building a great track, fun and competition. I didn't take any pics- too busy keeping Bill from getting ran over. He got ansy and we left earlier than usual.


I think the highlight of our past few weeks would be the invite to ride with Mike and Kim Baughman in the Antique Car and Hotrod Cruise the night before the big show. Mike has an incredible vehicle.

It is a 1955 Chevrolet tweaked out to the max. Mike has also installed a little "entertainment center" in the trunk including a high def screen for music videos to liven up any "tail gate" parties.

Count us in, honey. We had a blast. Of course it was a little tricky keeping Bill inside the car. He hung out the window waving and hollering at the admiring car. Thank you, Mike and Kim. Bill's auto hormones were in full swing... 

 
Mike's first chop shop was in his garage. He was about ten, probably. He and his brothers would take bikes apart to modify theirs, lol. They could sweet talk me into my bike parts without batting an eye. Uh huh, sure Mike.

I am learning lessons in compassion, patience, seemingly about every personality tribute I've ever admired. I hope I can live up to the type of person I think I am.