What Are We Dealing With?

It drives me crazy is that nobody seems to know just what we are dealing with, why he has dementia, or how quickly the disease is progressing. I feel like I have to be my own detective and it makes me wonder what people who don’t have a Type A, perfectionist, bull-dog, advocating for them, do. I want to know, yet I don’t.

He was diagnosed with Frontotemporal Dementia (FTD) retroactive to April 2103 and we are coming up to our yearly check with the dementia specialist. I am anticipating the doctor’s usual question: What have you noticed for changes?

I have to think about it early, otherwise I will just say that I haven’t noticed any change over the past year and we will go on our merry way for yet another year. I need time to reflect and journal in order to prepare.

I tend to measure slow, subtle changes by landmarks on a timeline.

January 2016:    We were unable to manage my husband’s very high blood pressure (At that time, 198/136 was considered a low Bp.) We worked closely with the Primary Care Physician, but could not get it under control.

April 1, 2016: My husband had a stroke, lost the majority of his right side, spent 2 weeks in the hospital and rehab, went home in a wheelchair, and received 7 months of OT and PT with In Home Care before being discharged. At this point, they have done all they can do. It is now up to him to practice. MRI scans from this time indicate that he could and should receive full mobility again over time. He is only 50 years old.

May 2016: The Geriatric Psychiatrist looked at his scans while he was in the hospital from a dementia standpoint. They showed slight changes that were subtle and not diagnostic. There was a little more atrophy, but not localized to frontal or temporal regions. We were told that atrophy is a very crude measure of dementia severity and that repeated neurological testing would give us a lot more information.

August 2016: My husband displayed cognitive decline. He was zoning out more, struggling with answering questions, taking “mini vacations”, getting frustrated, overreacting, had less of a filter, and began having bowel and wetting accidents that left him weepy and frustrated. He had another eye exam and retook his Field Test. He had regressed significantly since April, so was sent to an In-House Ophthalmologist. The doctor said that the regression: loss of peripheral vision & seeing spots and lines, was not eye related. They were dementia related, and the doctor requested to see my husband’s latest MRI. After looking at the images, the eye doctor said that he may not drive and that there is nothing further that they can do to help his deteriorating eyesight.

October 2016: He was admitted into the hospital for extremely low blood pressure, with dizzy spells that caused him to pass out. Doctors removed 2 Bp medications and drastically reduced 2 more. A week later, he was admitted for high blood pressure and an extremely fast heart rate. (It had more than doubled.) Doctors put him back on 3 out of 4 of the meds they had removed the week prior, at a lower dose. They are now testing him for Pheochromocytoma, and have referred him to an endocrinologist to review meds and whether testosterone injections are hedging his Bp up. He has also been referred to a cardiologist to help manage medication, blood pressure, and cholesterol.

Although diagnosed with FTD: Semantic Type. I feel his symptoms seem to present more like Behavioral Variant FTD. The diagnosis is a guessing game based on clinical evaluations and MRI images. That’s one of the frustrations of this disease: Guessing. Lots of guessing.  He still has strong verbal skills, occasionally struggling for words, but not often. I can still have great conversations with him and he has helpful feedback. He is still cognitively strong and a teammate that I have to moderately oversee.

When I reflect back, I note behavioral changes since 2009. The most glaring changes were how he interacted with people. He struggled with getting along with coworkers and customers at work and claimed that the mistakes that he was making, were people “picking on” him. At family gatherings, he would blend into the woodwork and hide from company. He began hanging around our son’s classmates, and became reckless with alcohol- drinking and driving, unsure of where he was or how to get home. He slept on friend’s couches instead of coming home. I left him for 4 days before he noticed I was even gone. He would go places that he forgot he went to, and forget to go places he was sure that he had gone to. He was treated by our PCP for depression and alcoholism. We were told that he was experiencing a classic mid-life crisis. During that time I asked him if he wanted our marriage to work, and he said that he “didn’t know”. It should be noted that we have been together since we were 16 years old and we were, and continue to be, each other’s best friend. After frequent trips to the doctor’s office, he agreed to therapy and to attend AA. He became a leader and when he messed up, he’d mess up with his AA buddies. His “secret friends” as I called them became all he wanted to hang out with. They went to  top-secret places, leaving me in the evenings as many as 6 days a week. I would wait in fear by the phone, praying for his safety on the roads. In July of 2012, he was pulled over with a DUI, he lost his license for 90 days, and had to take a DEEP course before recovering it. He was a Selectman for years, a Sunday School and Youth Group Leader and was highly regarded in our community. His indiscretion was in the paper, affecting his small town reputation, so his self-esteem took a nose dive. He couldn’t forgive himself and because of so much lying, I couldn’t trust him. I resorted to checking his phone and computer in order to keep him safe. It was like having a rebellious teenager in our home again.

He is accident prone, but he has always been. If he can trip over it, run into it, slide down it, or flip over it, he will. He has always been like that. Since 2002, he has had 4 significant blows to the head. He rolled his four-wheeler and was in trauma care for 2 weeks, rolled his pick up, fell off a ladder onto his head, and slipped on ice and hit his head on a snowplow blade. It seems like the dementia just magnifies his weaker tendencies. He loses things, and leaves things all over the property, but he has never been able to find his wallet, he has always lost money, his belt, his watch, and his jacket. Now, he can NEVER find them.

My husband is a sensitive soul with a soft heart. He used to be very in tune with the emotions of others, now he just watches me as I cry. He doesn’t seem to know what to do. He recognizes that I am sad and just watches me. He doesn’t like it, but he doesn’t do anything about it. He doesn’t try to console me by holding my hand or putting his arm around me like he used to. He will hug me back, or close his hand around mine, but I have to initiate most physical contact. When he gets upset, he gets really upset, sometimes losing his cool and his filter. For example, in a crowd, he might yell loudly, “Get the f— out of my way” or if the dog gets loose and stops traffic, he might announce, “If I had a gun, I would shoot her!” He spends a large part of his days playing Solitaire on the iPad over and over again and watching lots of National Geographic on TV. Lately, he has been obsessed with politics and Fox News.

He does do basic household chores: dishes, laundry, sweeps and vacuums the floors & makes the beds. He has figured out how to mow the lawn, work in the gardens, and do small projects on our 7-acre property despite being in the wheelchair. He uses the lawnmower like a golf cart and it gets him everywhere he needs to go. He chases dog/cat dander, becoming more obsessed with cleanliness. It has always been important to him, and he has always been very particular, but it has been heightened.

He is still able to shower, shave, and tend to his physical needs, even cleaning up after himself after wetting accidents.

He has developed a sweet tooth, which is new for him. He has never been a huge sweet eater. He loves to bake, especially Christmas cookies.

He lost his Managerial Position in 2013 because he wasn’t able to multi-task and keep up with the high demands of a busy tractor dealership. However, with a list, he is able to stay focused on household projects. His ability to remember seems to come and go. At times he surprises me and remembers things I don’t. Other times, he can’t remember things that were fairly recent. It’s weird. Sometimes he has it. Sometimes he doesn’t.

He doesn’t always think things through. I have to watch him carefully because he doesn’t always use good judgement. For example, he wouldn’t hesitate to carry a 40 pound bag of pellets up over the stairs, despite his weak right side. However, his impairment in judgement has led to needing to hide the checkbook and credit cards, because he was scammed by a work at home agency just after he was diagnosed, and he has purchased  crazy items over the internet. He has struggled with pornography and heightened sexuality that has been uncomfortable to address. He has become more socially withdrawn and less interested in family and friends. When taken for a day out, 3 hours is about all he wants to be away. He’d rather be home, although he still looks forward to attending church on Sunday. At times, he behaves inappropriately with strangers, especially on social media, losing his social manners by calling people names. He acts impulsively and has broken laws by drinking and driving (not over the past 3 years, although I have no doubt that he would sneak an alcoholic beverage if he could talk someone into bringing him one).

The only real compulsive behavior that I see right now, is the constant fetish over pet hair and the repetitive playing of games over and over on the iPad. He does get into patterns of TV series, but has always been very particular. We had a maroon carpet at our house on the farm and it showed every piece of lint. He was forever picking up pieces off the floor. He leaves us maps when we mow for him, because all the lines need to go the right way, and he has always yelled at people for riding their bikes across the grass, leaving lines.

I am not noticing binge eating, however, he is struggling more with this weight. I attribute it to a more sedentary lifestyle and being in a wheelchair. He isn’t happy with this, because he has always been slim and very physically fit. The extra weight and the graying hair makes him feel aged and he is very self-conscious about it.

There are some deficits in planning and attention, and he continues to take “mini vacations” even mid-sentence and will act like he is just stopping to regroup. Sometimes he will come up with the rest of his thought. Other times, he ends up abandoning the sentence.

The incontinence that was an issue at the end of the summer, has become less of an issue of late.

I still monitor his medication and when he lost the ability to tie his shoes, he never regained it. He sleeps a lot (10-11 hours/night), a naps nearly every day. (3-4 hours/day). Sometimes he acts 6, sometimes he acts 13, and sometimes he acts 50… but he is still 50, and still my husband, and so it is a delicate dance. He deserves respect, he needs to be needed and to feel like he is taking care of me, but I have to watch over him. I watch from afar, ready to step in and help if necessary, but nevertheless watching.

What does this all mean? We are told by the Neurologist, that the Chronic Migraines, which he is treated for every 3 months with Botox is not dementia related. We are told that the high Bp is also not dementia related. However, the Ophthalmologist reports that his decline in eyesight IS dementia related. We are told that his MRI shows atrophy, but not localized to frontal or temporal regions.

He is a complicated medical challenge with arthritis, Chronic Migraines, High Bp, High cholesterol, low testosterone, sleep apnea, depression, acid reflux, and multiple allergies. The most recent diagnosis: a beat up rotator cuff. The Orthopaedic Surgeon would like to repair the torn muscle and bone. This will result in a  3-6 month recuperation and most likely 9 months before being “back to normal”. This was originally scheduled for the day before Thanksgiving, but has been postponed until he is medically cleared. Personally, the thought of going back to square one, with round the clock care, and therapy, is more than I can agree to at the moment. Totally selfish, I know. This has left him frustrated, angry, and quieter than usual. I hate it when he is disappointed with me.

I can’t help but pray for a miracle. Maybe more Neurological testing would tell us the speed of progression and what type of dementia we are working with. Maybe something can be done to slow down the progression, or perhaps he has been misdiagnosed. Maybe the cognitive changes are a result of Blood Pressure that has been difficult to manage and side effects to years of a high level of medication (15-25 pills/day). Perhaps the 4 significant blows to the head are the cause and his brain will heal over time. Maybe just maybe everyone is wrong, there is a simple explanation, this has just been a bad dream, and we will enjoy the golden years together after all. Is it wrong to hope?



  1. Cindy, you are in my prayers, you have so much on your plate, with all of your husband’s medical problems. So very sorry, and I know how hard it is, my husband had EOA and only lived 6 years with it, passing away a year ago. I was with him 24/7 and lucky enough not to have to work. He passed away at home. By the way, I also live in Maine.


  2. I am so sorry to hear of your loss. This is such an unfair disease. But what a gift you were able to give him by staying home and keeping him home until the end. I pray for that. We Maine girls are tough. We will be alright by the grace of the Almighty. Hugs to you today. Keep your chin up.


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