At times OS can be interesting. I do a couple of posts where I share some really personal information and only get a few hundred hits, but then I do a space filler post on Labia Stretching and get over 21,000 hits. Go figure.

I'm going to get personal again because I think this information needs to get out. My mother has Frontotemporal Dementia and has been at an assisted living facility for over three years now.

Fortunately, my dad died before mom developed the disease. This removed a potentially large legal and emotional hurdle.

One of her siblings mentioned that he thought her memory was failing back in early 2002 or 2003. I started keeping an eye on her after that. Mom was still living in Virginia in 2004 when my wife graciously agreed to allow me to put an addition on our then house and move mom up to Ohio with us so we could better monitor her situation.

If you have never had to deal with a parent who has dementia, be VERY thankful as your life can literally be made into a living hell. Your spouse will suffer along with you and even our son was a victim.

With dementia in general, those suffering from it do not know their memory is fading. Had my mother taken quick action when she was first made aware of her memory problem, she could have been put on one of several medications that would have given her an additional 3-10 years of meaningful quality of life. My mother is an educated woman who is proud and stubborn and has refused to acknowledge, even to this day, that she has a problem.

As the disease progressed, mom became convinced that I was just saying she had a problem so I could get her money (such as it was). Mom spent many years as an educator and had accumulated a large circle of influential friends. She managed to convince them, before we could finally have her declared legally incompetent, that I was a total bastard and was screwing her over royally. She was quite successful in causing me and my family a world of hurt financially and emotionally as her bogus allegations were investigated by the various agencies she and her friends contacted.

In one instance, the Ohio Department of Job and Family Services spent two weeks going through our bank accounts (this was when I was self-employed and actually making a decent living) and personal finances before determining that we were not taking her money.

(An aside about guardianship in Ohio-your state will be different. In Ohio, due to past abuses by guardians, before you can become a guardian of a person's care and their estate, you must post a bond equal to two times the value of their estate and all expense requests must be approved by the court. I actually have the law firm that handled her competency hearing, and subsequent dismissed appeal, keep the checkbook and submit the expense requests. If you do this, it will cost your parent's estate a few hundred bucks a month, but I find it's worth it as it gives me an extra layer of liability protection.)

As mom's condition deteriorated, I talked with a lawyer whose firm specialized in dealing with these types of competency issues about my options.  In Ohio, it only takes a certification by one doctor to get someone declared legally incompetent. I eventually had my mother examined by six different doctors representing four different medical specialties, including a neurologist who was able to confirm via an MRI scan that mom had FTD. She appealed her competency hearing and the appellate court found clear and convinving medical evidence that she was not competent. You can expect your parent to fight tooth and nail to not be found incompetent so get as many additional confirming medical opinions as possible that your parent has a problem, other than relying on the state minimum requirements.

You will not be able to have your parent declared incompetent until they do something that CLEARLY indicates they have a problem, and it helps to have as many witnesses as possible. One of the things I worried about was that my mother was still driving as her memory and mental faculties deteriorated. I was worried she would injure herself or someone else, but there was nothing I could do until we got a call from the Ohio State Police saying they had mom at their barracks in Columbus. She had returned to Ohio from visiting one of her surviving brothers in Virginia and had gotten lost in downtown Columbus for at least three hours. A good samaritan helped her and contacted authorities. With this, I was able to get her sent to a facility for evaluation, and I also got temporary guardianship of her person.

I had her evaluated for three months and the reports from the doctors/specialists were compiled into a report that was used to help get her declared incompetent. (You can expect 7-10 grand in legal costs to get through each hearing. These costs can be charged to your parent's estate, if there is money in the estate available to pay them. One blessing we had was that mom had excellent insurance, so I could have her evaluated by some of the best doctors in the state.)

FTD can effect behavior in many ways. My mother was never a violent person, but on at least one occasion after being stricken with the disease, she became homicidally violent. One time she attacked our son--I don't give a shit if she is my mother, touch my kid and it's game over. Long and the short of it was that we could not care for her on our own and had to put her in an assisted living facility.

Before you put one of your parents in a nursing home CAREFULLY check the facility out. I visited mom very frequently until I was sure she was getting good care around the clock. If you do not like the looks of one of his/her care providers, demand the facility keep them away from your parent. As mom's condition has worsened, I visit less frequently as she is angry and combative the entire time I'm visiting.

If both of your parents are alive, the spouse who is not affected may fight you to have your other parent properly cared for. It was also a bit easier in my case since I was an only child and did not have to consult with siblings on care and competency issues.

Having to deal with a parent who has FTD, which is a particularly nasty type of dementia, is something I would not wish on my worst enemy. Seeing one of your parents deteriorate as a result of the disease will tear you apart emotionally.

If anyone is in the early stages of dealing with this issue, PM me and I'll give you my contact info and we can chat about your options.

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About FTD:

FTD is traditionally difficult to diagnose due to the heterogeneity of the condition. This heterogeneity means the signs and symptoms can vary dramatically between patients. Symptoms are classified into three groups which underlie the functions of the frontal and temporal lobes:

• Behavioural variant FTD (bvFTD). Behavioural symptoms include lethargy and aspontaneity or oppositely disinhibition. Apathetic patients may become socially withdrawn and stay in bed all day or no longer take care of themselves. Disinhibited patients can make inappropriate (sometimes sexual) comments or perform inappropriate acts. Patients with FTD can sometimes get into trouble with the police because of inappropriate behaviour such as stealing. Recent findings indicate that psychotic symptoms are rare in FTD, possibly due to limited temporal-limbic involvement in this disorder. Among FTD patients, only approximately 2% have delusions, sometimes with paranoid ideation; hallucinations are rare. This is significantly less than AD patients, where approximately 20% have delusions and paranoia.^[2] See ref. "Psychotic symptoms."
• Progressive nonfluent aphasia (PNFA). Patients present with a breakdown in speech fluency due to articulation difficulty, phonological and/or syntactic errors but preservation of word comprehension.
• Semantic Dementia (SD). Some patients remain fluent with normal phonology and syntax but increasing difficulty with naming and word comprehension.

According to DSM-IV diagnosis is mainly clinical including changed behaviors, changes in language and others, using also image exams and neuropsychological tests.^[7]

Structural MRI scans often reveal frontal lobe and/or anterior temporal lobe atrophy but in early cases the scan may seem normal. Atrophy is often asymmetric. Registration of images at different time points (e.g. one year apart) can show evidence of atrophy in two cross-sectional images that may be reported as normal. This is a useful diagnostic technique. However, many research groups are currently looking at ways of making an early diagnosis of FTD using other techniques (magnetic resonance spectroscopy, functional imaging, cortical thickness measurements etc.). FDG-PET scans classically show frontal and/or anterior temporal hypometabolism, which helps differentiate from Alzheimer's disease. The PET scan in Alzheimer's disease classically shows biparietal hypometabolism. Meta-analyses based on imaging methods have shown that frontotemporal dementia mainly affects a frontomedian network discussed in the context of social cognition or 'theory of mind'.^[8] This is entirely in keeping with the notion that, on the basis of cognitive neuropsychological evidence, the ventromedial prefrontal cortex is a major locus of dysfunction early on in the course of the behavioural variant of frontotemporal degeneration.^[9] The language subtypes of frontotemporal lobar degeneration (semantic dementia and progressive nonfluent aphasia) can be regionally dissociated by imaging approaches in vivo.