I met with mom's neuro-psychologist today to follow up on last weeks' tests. Mom was supposed to go too but she called them and tried to cancel - said she was sick. Fortunately they're tuned into those kinds of calls and called me. So, I went and spoke to the doctor at length.

He diagnosed her with fronto temporal lobe dementia, possibly Pick's disease. Although it's a relief to have the validation that the problems aren't all in my imagination, it's a very sad day for me. I've got very little information on those forms of dementia, but what I do have says they are rare and can progress extremely fast.

He based his diagnosis on the test results and partly on her combativeness and frequent anger and rages. Mostly she aims her anger at me but I've caught her going after people on the phone too. She's gone after service people, and I was told that she was argumentative and aggressive toward neighbors in her rv park in Florida this past winter.

He kept saying "your mom's memory is broken." He also mentioned that her inhibitions have been relaxed and I would agree.

I saw her this afternoon when I took some cold medicine and a few other items to her. She didn't ask me what the doctor had said. I don't want to be the bad guy so I didn't tell her the diagnosis. I said the memory doc would explain things to her when we see him on Thursday. Today's doc said he would try to get some info to the memory doc by Thursday. I hope he can at least talk to him on the phone.

So, I have a couple of questions - can I still participate in this message board even though my mother hasn't been diagnosed with Alzheimers Disease?

Is Picks Disease or Frontal temporal dementia usually a fast progressing disease? He said she is in the middle stage of the disease and that she might only be able to live alone for another year at the most. I don't even know if it's a terminal disease like AD.

Sorry for your diagnosis. I have a friend, her husband had Pick's and it is different but I certainly feel you should stay here for support as the results are the same. Hard to Handle. It is a faster form of brain disease from everything that I read on line. Put Pick's disease in search engine and some good stuff comes up. Both diseases are not good for the caregiver. Soooo. God Bless and please continue here to get and give support and caring. We all need each other.

Another item from my friend. the lose of inhibitions it a very real problem. Also anger is more pronounced in Pick than ALZ. Your preparations may be different as they get more violent sooner, per my friend. good luck.

Dear Kdoglady,
Hello and welcome to the AD Message Boards. I am sorry about the news about your Mom.
Of course you should stay here with us and continue to get as much support as you need!

This board for for People and Caregivers with Dementias. Frontotemporal, Pick's, AD, (sorry can't think of other names right now).

Several people on these boards have FTD or pick's or are caregivers to people with those dementias.

Please heed the advice you have been given and gather as much info as you can about FTD/Pick's. These dementias tend to have more personality problem traits including rageful, difficult behaviors! Sometimes they are treated with different medications than AD.

I tend to disagree with your Mom's doctor in that she probably can't stay alone any longer. Some people with FTD/Pick's get into a lot of trouble because of these personality changes!

Sorry for your news. But it is better to know what is going on with your Mom so you can keep her safe. Safety is #1.

Good Luck. Please come here often and let us know how you and your Mom are doing.

Welcome to OUR family.

Hi Kdoglady,
Sorry to hear about the diagnosis. You'll be in good company here though -- there are several (as Lisa already said). If you click on the AD Association logo at the top of the page, it will take you to their home page, where you'll find links to explanations of these types of dementia. (click on "Alzheimer's Disease" and you'll get a pull-down menu...then click on "related dementias.")

First, I want to say that this site is for ALL dementias. This is all about Alzheimer's Disease and related dementias, so you do indeed belong here. There are quite a few of us dealing with FTD both Pick's and non-Picks's.

It is good to finally have a diagnosis, now you can do research and go from there. At least this gives you the ability to gain insight into what your mother is experiencing and how to go about gaining appropriate care.

There is a wealth of information on the web regarding FrontoTemporal Dementia including Pick's FTD.

My mother has non-Pick's FTD, but when the frontal lobe is involved, that is where all the behaviors and inhibitions reside.

It would be good to Google, AFTD, which is the Association for FrontoTemporal Dementia. They have quite a bit of information regarding Pick's Disease.

Because things are so different with this type of dementia, I recommend you read, read, read. Education is the key to dealing with this. The second thing I would strongly recommend is having regular appointments with your Neurologist and having Neuro manage all dementia meds and dementia care. FTD can become a bit complex re management.

Do let us know how everything is going as we are here to support you. Do not be surprised if your mother does not buy into the diagnosis. My mother was very undone that the doctor could possibly say she had dementia and it was a long time before she decided to let us all off the hook.

Do keep a close watch that you have all your DPOA's set to go and ensure you are on all her financial accounts. With FTD, it is often the case that impulse control, lack of judgment and delusional thinking can lead to some creative financial mischief on the part of our loved ones. Hopefully this won't happen with your mother, but best to be safe.

I will be thinking of you.

Johanna C.

My mother's diagnosis of FTD was finally diagnosed by an excellent neurologist. The neurologist said there was a lot of vascular damage that had been going on for years that caused the dementia and said there were no FHA approved medications for FTD. It was heartbreaking to find out the diagnosis, but also a relief to know that I was not imagining the problems Mom was having.

From what I can tell and from what neuro said, it is frontal lobe damage (part of FTD) - very poor judgment, extremely impulsive behavior, incontinent much earlier than a typical Alzheimer's patient. She spent a huge amount of money rapidly. Extremely rigid beliefs, no tolerance for other people's opinions on almost anything. Doesn't want to shower often or go anywhere. But Mom is still articulate, cognizant and does not have severe memory issues. But she is very apathetic, all she wants to do is stay in her room, watch TV, and go to the dining room for meals. She even has a little dog that lives with her in her room at her assisted living facility.

Like Johanna said, having signed durable financial POA and medical POA is critical. I had to pursue guardianship, unfortunately, to protect my mother from herself and some family members. She has absolutely no awareness that anything is wrong and emphatically denies having any dementia. I don't talk about it with her, but she remembers what other family members have told her and what was said about her in court.

P.S. One of the web sites I found very informative and helpful was UCSF (University of California San Francisco). If you google FTD, be sure to enter "FTD dementia", you will find more information that way. The web site Johanna mentioned is excellent also. I spent many, many hours reading all of this to better understand my mother's behavior. The AFTD and UCSF were the best sites.

Hi, Kdoglady. Sorry to hear about the diagnosis.

The average course of FTD is 8 years. However, FTD has many different subtypes and pathologies, and the rate of progression can be different for different types. For example, tau-positive FTD is known to progress more slowly than tau-negative FTD. The symptoms that develop also depend on the pathologies. For example, FTD with ubiquitin-positive inclusions is more likely to present with both social and language dysfunction, and motor neuron disease is more likely to emerge in these patients. Tauopathies are more commonly associated with an extrapyramidal disorder.

Some links for information on FTD:

http://memory.ucsf.edu/Education/Disease/ftd.html

http://ftdsupport.com

http://www.annals-general-psychiatry.com/content/6/1/15

http://www.neuropsychiatryreviews.com/apr02/recognzie.html

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16718704

http://memory.ucsf.edu/PDFs/FTDarticle.pdf

http://geriatrics.modernmedicine.com/geriatrics/data/articlestandard/geriatrics/332006/366189/article.pdf

http://www.neuropsychiatryreviews.com/apr02/recognzie.html

I have an excellent paper, "Medical Management of Frontotemporal Dementia" by Richard Caselli, which I can email you, if you'd like a copy ... and a bunch of other references, if there is any additional information you'd like.

I never had any other diagnosis but dementia for Mom and Dad and I post here all the time. Dementia is terrible no matter what form it takes and I like having some kindred spirits here. No one is going to bother to find out exactly what form of dementia my dad has, either because he's on Medicaid and I don't see them expending the effort. Mom has passed already a couple of months ago and I can see that she and a lot of the LO's on these boards have similar symptoms. Dad, too. Post away!

Frontal lobe dementia has been described as AD on steriods. It is very tough on caregivers because of the terrible rages that go on for hours. My husband is well controlled on large doses of seroquel after many other drug regimens. The usual AD meds that the docs like so well only make things worse. Good luck.

K-dawg, it's important to know that diagnosing the type of dementia can be very challenging. Sure, some people fit the categories perfectly & there's no doubt. Then there's people like me, who fit the diagnostic criteria for AD, and also have a rage problem that only lots of Seroquel can keep down. An MRI showed connection problems between my frontal lobes and the rest of my brain, maybe that's it.

Also, I've found that as time goes by, I don't care all that much about diagnostic labels. It is what it is, everyone agrees I have dementia, and what you might label me depends at least in part on what kind of day I'm having.

Please keep asking questions! It's good for both of us.

Dementia's enough for me -- we're all in this together, so stick around!

Hi Kdoglady,
I am sorry to hear about your Mother's dx of FTD, I know you must have many questions right about now.

My father was dx with FTD about this time last year, but things had really gotten out of hand. He had been the primary caregiver for our mother who had been in the middle stages of AD for sometime. Long, long story short, this dementia is VERY different AND there are many variations within FTD.

With our dad we knew something was really wrong but we couldn't get anyone to take us seriously. My sister already had all the standard DPOA, Medical POA, etc. and had been writing letters to our parent's doctor for over a year. He basically ignored us and the geriatric nurse practioner that was caring for our mom.

My dad's behavior was becoming scarry and we finally got his license revoked. Then at least one of the three of us lived with them 24/7, even though none of us lived near by. We tried EVERYTHING we could possibly think of to get them to either move to Assisted Living or get some help at the house. They refused. The combination of AD and FTD and strong willed independent people was working against us.

Even though we had many legal rights, you CAN NOT force someone to accept help or live somewhere against their will UNLESS you gain guardianship. What a NIGHTMARE!! Doctor's can't or won't help, they all point to someone else and say "that's their job". Local agencies can give you info but they know you are as helpless as they are until someone gains guardianship.

FTD is tough because memory is the last thing to go. Therefore, the patient seems OK to most people who just interact with them for 10-20 minutes or so. They don't realize that judgement, reasoning, rationality, anger management, etc. are LONG GONE. A naturally smart organized person with FTD can hide their decline from most people for many many years.

Once things really start going downhill, the hardest thing to face is that the situation is not going to get better. My advice, get out ahead of it before you fall off the cliff. If that means gaining guardianship, do it! It takes way more time than one would expect, and lots of money. But often is the only way you can keep your loved one safe. I'm not saying this is the way things should be, but I do know it is often the way things are.

I know this is a hard time for you. I hope you find lots of help and great information. It sounds like you are doing a really great job.

Take care, best of luck, Linda

On diagnosis, I don't really care what the diagnosis is because Alz can only be really diagnosed when plaques and tangles are found, and that's after our LOs have passed. I know that my Mom has what I call mixed vascular and age-related dementia. Symptoms are repeating and repeating, no short term memory, confusion with daily matters and physical things (like dressing, toileting, bathing), and confusion as to time and space (like what day is it, ready for appointments 2 hours ahead of time). The short term memory issues are the most dangerous since one forgets to drink and eat, puts the tea kettle on the heat and forgets it so it burns up, walks out one door and tries to come back in another. When the longer term memory issues start to get involved I've seen things like the silverware gets put away in all strange places, containers start to get opened in weird ways (like a coke can with the tab broken off then the can opened with a hammer), half a bottle of shampoo used in two showers. Hand rubbing, humming, repeated actions are also things to look forward to!

Chin up all, we're all in this together!

The only absolute with any type of dementia is, there are no absolutes. My mother's story will be quite different from others. Each patient is quite unique, and my Mom's experience does NOT mean your mother will develop the same issues, and she probably won't.

No two patients are alike and I don't think any "fit" any category precisely. This is sometimes what makes things so confounding, especially early on.

In my mother's case, it started so slowly we initally missed it. Since my mother has never been a very easy person, when something would pop up, we'd just think, "Well; that's just Mom being Mom one more time."

While some FTD patient's have a decline in social skills and are inappropriate in that context up to and including sexual acting out, or some become obsessive about eating large amounts of food nearly constantly, my mother has NEVER had any one of these as an issue.

The post that mentioned, "FTD is like AD on steroids", is a pretty apt description of it all.

My mother's disease evidenced itself with personality changes. Then rapidly came a severe problem with horrendous lack of judgment, severe lack of impulse control (initally, especially financially), she had high irritability, absolutely no empathy for anyone, was quite irresponsible, later had bouts of hair trigger severe agitation and even occasional rages.

Within months, Mom was severely resistant to changing clothes, bathing and especially to hair washing. This in a woman who had been meticulous and always had worried about what other people thought about her. No matter how pleasant we tried to make the bathing experience with soft lighting, warm towels, soft music, scented soaps, spa setting, letting her set the time, etc. NOTHING helped.

We finally had to resort to her sitting on a chair in the bathroom and using those pre-wet large washcloths you can heat in the microwave. BUT, no hair washing, no dry wash either. I even hired, "Adele's Hair Salon on Wheels" - she'd come to the house, but Mom would have none of it. It was pretty dreadful. I'd become ecstatic when six to eight weeks into horrible hair, she'd finally let us gently shampoo; I think she could finally smell herself and would relent. It was so unhealthy.

Mom became delusionally driven. She would fixate on an issue or an object or even groceries and develop issues with whatever focus she had and she would go on and on and on ad infinitum with the fixation. This could go on for weeks. Eventually, she would drop the one fixation, but it was ALWAYS replaced by another.

She also obsessively cleaned out her dresser drawers time and time and time and time again. Harmless.

Memory is not compromised early on, so having full memory and lack of judment and no impulse control and rigid delusions, led us on some pretty horrendous episodes that had to be remediated.

She even tried to use the telephone book to find an attorney to divorce her 90 year old husband who is about as sweet a fellow as can be. She actually had made some calls. No reason, he was sitting in a chair or sleeping in HER house, and she wanted him out, husband or not. Give Mom five minutes where she was in a private setting, and she'd have the whole world turned upside down.

She was VERY sly and cunning about alot of this in the early mid stages. Some of the behavior was done with malice aforethought; BUT we have to remember even if this was so, it was the dementia that caused her to go on these pre-planned exercises in tribulation.

We had to take her name off the bank accounts as she constantly tried to plunder them by phone. She even ordered additional checks so she could secretly write them.

Mom could not learn new things, but she was able to retain much of what she used to know. Very early on, she lost the ablity to pay the bills and write checks. Later, mid stages, she completely lost the ability to process the written word. At first, she blamed this on her "worthless" eyeglasses. I wanted to be sure about her vision, so took her to an ophthalmologist. Her eyes were fine, her eyeglasses were fine. She did however, fail the reading test.

Later, we saw she was not able to process the action on television. It began to agitate her. She'd be trying to process an action, but many other actions had already taken place and it overwhelmed her and led to dreadful frustration which led to agitation. She could no longer watch TV. She complained bitterly it was a worthless TV set and that the light coming in from a window further rendered it useless. Very sad.

In this context, when she was in the hospital, her window faced a busy road. She could not bear the cars traveling past. She'd see one and be trying to process it and then ten more would go by and it would be upsetting; we had to keep the drapes closed.

For a period of time, (and this passed), she could not bear more than one voice or one action in the room at a time. The attempt to process all the dynamics drove her to severe frustration and again, anger.

Oh, and don't dare bring a single new item into the house. It completely undid her. I bought a crockpot for ease of cooking meals. She went ballistic. She shouted, she yelled, she pounded on the furniture. I put it in the cabinet out of sight, she continued in high agitation until I removed it from the house.

When the vacuum cleaner went to the happy hunting ground and could no longer be fixed, I bought a new vacuum. Again, shouting, pounding, cursing me; I had to hide it outside the house. Each time the vacuum was used, she'd go into her Linda Blair imitation until it was once again out of the house.

I sometimes got so tired. Thank goodness for finding this Online Community. It saved me so much angst and assisted me in recovering my perspective.

Her delusions were the ultimate challenge in her disease process, because the delusions caused her to severely act out and led to monstrous agitation.

We lovingly and very creatively did everything we could think of, and always with her needs in mind. We followed all advice and constantly sought new approaches as the old ones failed. Finally, everything was just too, too over the top and it went on 24/7.

Her quality of life was severely compromised and my poor step-father was declining from the severity of stress. It was at this point that we finally were able to get her to Neuro, (she refused for over a year), and he prescribed Risperdal for her. It certainly and significantly made a difference. Not perfection, but SO much better. And, it brought her peace within her mind. How dreadful this all must have been for her. I can't imagine living each day with all of that going on in her head.

She could lie so convincingly, that even I would get sucked in. She lied alot. My credo was; verify, verify, verify. She lied about tiny things unnecessarily; she lied about BIG things. She claimed I stole from her - her money, her clothes, her vacuum cleaner, her kleenex, her bedspread, you name it. She told the bank I was stealing. APS was called, the police department notified, the bank assured both agencies nothing was amiss, the assets were relatively untouched except for minor bill paying. Nothing came of it.

She told several doctors, very calmly and very believably that she had given me $15,000, (never happened), to hold for her for a week while she was getting a bank account ready, and I refused to give her back the money and purchased jewelery and took vacations. Unfortunately, I think sometimes she was believed. I had to let go of what other people might think; I knew what was true and I kept excruciatingly careful and detailed records of everything.

She also hated her husband and the aide who was very kind to her. She led them on many an unmerry chase and was so verbally abusive and rigidly controlling, I wondered how either of them stayed.

We strived and strived and strived. No relief. She, (and this is typical), came to ferociously hate those closest to her that were rendering most help. No amount of love or understanding or interventions could change that belief. She came to hate me with a vengeance. She was far beyond validation or refocusing.

She'd cancel aides, she'd cancel medical equipment, she'd order thousands of dollars worth of frippery such as golf carts, etc. Five minutes out of direct view, and she'd go to town in warp speed. It would have been actually rather impressive if it wasn't so horrible.

A wonderful Alz Assn Social Worker taught me the tremendous value of a, "therapeutic fib" and it turned out to assist us in getting some crucial things accomplished and also made it much easier on Mom.

Early in the disease, Mom developed urinary incontinency. Initially, it was partial and she could still get to the bathroom. However, that changed to total incontinency. At the same time, she began to lose the use of her legs. That lower extremity issue evolved quickly once it began and she could no longer even assist with transfers and she became wheelchair bound.

Then in the winter, she began to develop pneumonia. She had no cold or flu, but pneumonia happened several times. I began to think about "silent aspiration", where the food went down the trachea without any coughing or choking. I felt it may be aspiration pneumonia.

The doctor wrote an order for a swallow exam under fluoroscopy, and there it was. The first truly horrifying realization of significant physical decline leading toward the dreaded end stage dynamics.

Her food was now pureed. She still had aspiration and continues to this day. Then her speech began to go. It was shocking to witness this taking place and know there was no way to stop it. She can talk, but only a word or two or three at a time, and sometimes words just escape her.

Suddenly, the other shoe dropped. Mom could no longer hold herself upright in a wheelchair, she'd list to the left or the right. We propped her with pillows. Soon she started falling forward. Mom could no longer sit in a regular wheelchair. She then required a guerney chair.

The decline continued. Rather abruptly, Mom began to lose the functional use of her arms and hands. I so wanted to make this all stop, but of course was helpless in the face of it all.

Well; the acuity of care was so high, no agency would provide an aide. I called all sixteen agencies anywhere near our service area. I had a hospital bed, etc., but it was too much. We certainly could not afford two aides.

Full lift, unable to turn over in bed and all the other issues including now needing intermittant suctioning. Before the swallow issue, I tried an ALF for dementia residents. Mom lasted there four months and they could no longer provide such a high acuity care even though they were hospice certified. I placed there knowing there were hospice beds and the marketing person and administrator certainly sold me a bill of goods.

Placement was the worst of the decisions to have to make. I didn't know there were so many tears to be shed, so much sleeplessness, self-doubt and hopeless/helpless feelings to be borne. But there it was.

Mom is now in a wonderful nursing home owned by four Dutch churches. Her care is amazingly high quality as well as loving and respectful. Hospice has been plugged in.

Mom throughout this terrible disease process has been like a dimmer switch on a light plate. Some days or weeks she functioned so much better, I'd be lulled into a false sense of security; then abruptly the switch would slide to the other pole downward and she'd be much worse. Even though she is now in the very end stages of her disease, this dimmer switch effect continues. I never know how she will be when I go to see her.

A few weeks ago, she had a profound decline and the doctor and I felt she was in her terminal event. Then . . . . . the dimmer switch began to slide back the other way. She is alert and mostly oriented. She has some memory loss, but most is intact. Some days she doesn't know my name or even that I'm her daughter, other days she knows all of it.

She speaks in two or three words and some days she is gone to that alternate universe and not connected to the here and now; and then she returns. She eats pureed foods slowly hand fed, and spends most of her time sleeping even though at activity or entertainment. She takes her usual blood pressure med and that's pretty much it.

I feel dreadful that the scope of the universe is so tiny for her; BUT - she is calm, no more agitation. She is in no pain, appears comfortable and always greets everyone with a big smile and loves her aides. When I visit, I talk about all the good and happy things from years gone by and try to bring all good thoughts and memories.

It is one day at a time, one week at a time. When the phone rings in the evening or at night, I freeze. I am afraid it is, "the call." One day it will be, but in the meantime, she is still living and I try to respect that and decorate her room for each holiday and in between. I provide nice clothing and nightclothes and toiletries. As said, we recount the golden years of memory. And, I never forget to say, "I love you." One recent day she startled me by saying it back. That is the first time she has ever said that in my entire life.

It was a gift.

I've made mistakes along the way. I've had some pretty negative feelings about her along the way and have felt terrible for having them; there have been times I've distanced myself especially psychologically. I am not the perfect daughter she so would have loved to have and in some ways, I am not even a good daughter, but I am still there.

This is one person's story. I'm sorry it was so long. No matter what happens, there is always an answer to be had - sometimes not exactly the answer we wanted, but we learn to be very, very flexible. We become highly educated to the disease and eventually become creative at meeting the challenges as they arise. We learn about the grace of the human spirit here on this wonderful Caregiver's Forum and are blessed that it exists. We learn the true meaning of, "it is what it is", we learn to put one foot in front of the other and continue on. We learn it's okay to have negative feelings and to grieve.

Most of all, we learn from each other.

With the deepest respect and affection for all,

Johanna C.

OMG Johanna. I'm stunned at your story and candor. Yes, I've probably read most of it at one time or another on "the other board", but to see the condensed version in it's naked honesty and pain, I'm speechless. And it could be me. My mom wasn't diagnosed, but it's her. I've lost my extended family, forever, because of it. They've never believed me. My mom's in a memory care residence, they take "OK" care of her (after all, dirty fingernails and somebody else's clothes are minor in the big picture) and I visit less and less often. Down to twice a month lately. She doesn't know who I am. Still chatty, but nothing I can understand or respond to other than "Yes!" or "I know!". Anyway, thanks for your candor and willingness to help these poor precious souls.
Barb

In Linda Lalande's post, she makes some excellent points. I could not get any doctors to take me seriously, either, until I got Mom to the neurologist. Diagnosis is important for several reasons. I felt it was important to find out if there were any medical conditions that could be treated. You want those to be checked and ruled out. Also, I was hoping there were medications that could help, but I was told they are contraindicated for vascular problems and FTD.

Safety is another issue, since Mom's driving was getting dangerous. Almost no one in the family realized how poor her judgment was, because she is articulate and seemed so "with it". I didn't believe the neurologist at first when she said guardianship was the only way to protect Mom because of the nature of her dementia and her particular symptoms, but it turned out she was right. My guardianship process did not cost a lot of money, because I ended up going through APS because of family members. All parties with the court and APS were courteous and professional. But I was quoted very high prices from attorneys before this happened. I found it incredibly stressful, difficult and emotional to go through guardianship, but it's been very peaceful for the last year or so. It was well worth it, Mom is safe and provided for.

Dear Barbilou and Mary: The beauty of this Online Community is finding people who are walking simiilar paths and who truly understand.
For me, it was a huge comfort to find I wasn't the only one.

And yes, Mary, I agree thst an accurate diagnosis is very important. I too went to great lengths with multiple specialists early on as I felt there may be a physical cause for the symptoms.

This feeling was exacerbated by indifferent primary MDs including Mom's Board Certified Geriatric specialist. He was extremely distanced, did not find working her up for accurate diagnosis important, and thru the worst of Mom's pounding, shouting rages refused to prescribe anything for her.

Being that I was new to all of this, and had not many clues as to what was happening, it was severely stressful.

One of the more difficult dynamics was my mother's ability to become completely "normal", calm and smiling when someone "important" was around - doctors, social workers, my out of state brother, etc. However, upon returning home after an appointment or within minutes of my brother's leaving the house, she'd be completely undone and back to her full blown behavioral issues.

No wonder so many people did not believe. I began to keep a dated journal on computer where I documented the more outlandish or severe incidents should I need recall for the future.

Thank goodness for Neurology when we finally were able to get her there. The attending MD also had Mom on a med that was contraindicated for FTD.

As for not driving, the FTD patient definitely should not drive. Though appearing okay, the lack of judgment, irresponsibility and impulse control issues are real risk inducers. No one would want a loved one or others to be hurt, and also, if there is an accident, people are likely to sue and that could present some significant impact.

It took me awhile to realize that I could not find that ONE thing that would make things much better than they were. It didn't exist.

Mary through her wisdom is already there - our mother's are safe, secure, and well cared for. There is no perfection, there is the best that can be done with the challenges as they present themselves.

I do find it sad that peacefulness for my mother has come at the expense of so much loss. It is truly good though that she is no longer agitated and delusional. Can't imagine how bad that would be now that her entire body is no longer able to be consciously controlled, to continue to be delusional and highly agitated.

Linda is absolutely right on spot. Get ahead of things. Plan far in advance. Always have a, "Plan B", if the inital plan does not work out as well as it was thought. This will save a tremendous amount of stress and needing to make significant care plan changes under great pressure.

I wish you all the very best.

Johanna C.

Thank you all very much. Seeing your encouragement has really helped. I'm in awe after learning your stories.

Today we saw the memory doc and he gave her a different diagnosis. He said she has mixed dementia; Alzheimer's and vascular. My jaw about hit the floor and he went on and on but never stopped to ask me why I was looking at him like he was nuts, nor did he even take a breath so that I could interrupt.

He had spoken to the neuro in the morning - I asked - but claimed that FTD and Picks weren't even mentioned. She's had a tremendous amount of behavior issues and personality changes, and went downhill in her memory a huge amount from January to March.

He said she's in the early stages (the neuro said middle)and I asked if there were other tests planned, and when she would need to come back, etc. He said no other tests were needed and she didn't have to come back at all. She could do all her follow-up with her regular internist.

The neuro had said he was going to ask for a driving test, and an occupational therapy evaluation to lead up to conservator-ship. She cannot do simple arithmetic. Someone needs to take over her finances because she isn't capable. The other problem is her house is dirty and her kitchen is filthy. The memory doc's office didn't know anything about either idea.

Her internist is a nice guy but he's not up on dementia at all. And he's not interested in communicating with me - I tried.

I am really confused and starting to get angry. I called both doctor's offices back late this afternoon and left messages but I don't know what else to do and I don't know what to think about any of this.

I should be happy - Alzheimer's is supposed to be easier to deal with. Maybe I just got stuck on the first thing I heard, but it all strikes me as bizarre.
Thanks for letting me ramble on here.
k

This discussion, and so many like it, remind me of a poem I think I learned in high school. Can't remember who wrote it, or if I have it right, but here goes:

Some say the world
Will end in fire,
Some say in ice.
I say ice
Is nice
And will suffice.


In my own words, I take this to be talking about my current perspective on my diagnosis. Looks like Alzheimer's, but I have a few things that seem more frontal lobe-ish. I used to obsess about what was happening to me, but now I think the label doesn't really matter. I'm not saying anybody else should feel that way! Just describing myself.

Hmmm. Well, you obviously do need to talk with both doctors and find out what the hey is going on. Mixed dementia and FTD require different types of treatment.

Also, the testing may be complete, but usually, you'd need a qualified neuro on your team, to help with treatment decisions. If your mom has behavior issues and you aren't able to manage those with nonpharmacological approaches, you may eventually need meds to help manage them, and a qualified neuro is much better for selecting the appropriate meds than an internist. I'd also think that someone in the memory clinic such as a qualified neuro would be better at helping you identify nonpharmacological approaches.

"Qualified" being the key word here...

I'm also a bit surprised that the neuro is pushing you toward a conservatorship. You may be able to do everything that's needed with a DPOA, which is a much less expensive alternative.

Question about the neurologist. Is this a 'regular' neuro or a geri-psych? we came to a point where Mom's regular neuro said Mom was outside of the scope of her practice. Recommended a geri-psych.
I can't fathom going down this path without a trustworthy neuro.

Alan, thanks for helping me clarify my goal here - I tend to get pretty obsessive at times so I'm glad for your post. The main thing is the treatment. If she's got FTD or Picks, there's no need for Aricept, so why add it to her other 8 or 10 meds she's already taking. But if she's got one of those, she probably will need Zyprexa or something similar again and I'm not sure her internist will know that. She took two doses of it recently and then refused to take anymore. But that was from an out-of-state ER.

JAB - I called both offices yesterday as sooon as I dropped mom off and left detailed messages. Neither has returned my call.

I'm really worried about a couple of things: her driving and her finances. She doesn't drive very well and I cannot find out if the state requires doctors to notify the sec'y of state when a patient is diagnosed with dementia. If not, I'll have to be the bad guy and notify them. There is a form that implies they are, but when I called the S.O.S., the woman said no. Seems very strange to me.

As for finances, her ability to do simple addition is gone and she doesn't understand the relative value of money anymore so she needs to relinquish control. Unfortunately, she won't do it without a fight. I already have durable power of attorney, but if I try to take over the money part, she'll find a different person for the DPOA. She asked a friend to take it a couple of weeks ago when at the height of her suspicion of me; fortunately the friend said no and then called me. The next day she asked her neighbor to change the locks on her house so I couldn't get in. If she asks someone else, I might not be so lucky and she could lose everything if she asks the wrong person.

I'm the one who is pushing for the conservator-ship, but the neuro was totally supportive. That was one of the reasons he wanted the OT evaluation.

The neuro we've see is a neuro-psychologist, not an m.d. The memory doc is an internist, with a geriatrics specialty. I don't know how I'll convince her she needs to see another neuro for the ongoing treatment - once he told her she could go to her internist, the door was closed to all other options. Thank you all again for answering my questions! I feel like I have enough to fill a book!
k

The Neuro called me late today and explained everything. He didn't have the file from the memory doc's office until after we met. Once he got that and saw her MRI report, he realized she does have vascular dementia. It also showed classic hallmarks of Alzheimer's - hippocampi are shriveled, brain has shrunk or atrophied and so on.
I reminded him of the need for the OT eval and the driving test so he'll emphasize them. He's also going to send a copy of the report to her internist, me and the memory doc. He figures that way one of the two docs will refer her for the driving test.
I feel confident now and I think once the memory doc sees the report, he will do the right thing.
I have a lot of learning to do about Vascular dementia - don't know much about it at all.
Thanks again for all the thoughts and caring you all gave me. You are a great group of folks!
k

I found it very helpful to FAX my Mom's Dr. a complete "report" on what life was like for her at home when I first determined something was clearly wrong with her. She too was good at appearing "normal" for the short Dr. visit. And I didn't want to talk to the Dr. about Mom in front of her. He really appreciated the letter and it gave him a much better idea of the whole picture.

K-dawg, I'll bet one of those smart professionals already told you, that Alzheimer's and vascular dementia often occur together.

Now that those medical tests and her diagnosis are out there on record, it becomes important to decide about her driving. If her reports look like she shouldn't drive, and she hurts someone in an accident & her tests are discovered -- could be rough. Others know more about that than me, I hope they comment.

Briefly, vascular dementia tends to look somewhat like Alzheimer's. It tends to move in jumps, while Alzheimer's is usually more gradual. But remember, neither illness has read what they're supposed to do, so there's always unpredictable stuff.

Vascular dementia can come about through mini-strokes. I've also read that just having a semi-clogged blood supply, short of a stroke, can over the long run be as damaging.

K-dawg,
We need your imput as much as you need ours, please stay so we might help each other.
Alan- far as I know I wasn't adopted, I swear we could be related. I'm so sorry about your wife's illness ( I didn't know )Do you all have any children? I have four, all grown of course and 7 grandchildren, all beautiful ofcourse. Also sorry to hear about your type-2 diabetes, that could be a major factor with both of us. I am on meds and insulin for that. I always take a recorder at my mom's appts.Arrogant as I am I never thought to take one with me to my appts. Your right I need to, and will. Let you know more nent week.

Alan,
I am in complete agreement about the driving. If the report says no more, the car will disappear from her garage. She'll be furious and scream about it for weeks or maybe longer, but I'll do it.

Taking the keys won't be enough. Last summer she couldn't find them and HAD to go to the grocery store - never mind that she goes every day - so she tore the house apart with no luck and finally called the dealer to get new ones made. She asked the neighbors to take her but they were on their way out, so loaned their other car.

She got the keys made - over $200 - kept the dealer open an extra hour and then proceeded to drive to the neighbor's car for the rest of that day. She was still driving it the next day - to church, then brunch, etc., until they came and asked her to give it back. She told me she knew she had to give it back but didn't know it had to be so soon...

When she got home from the dealer, she found her original set of keys hanging right where they belong.

As for her diagnosis, it's the small artery disease kind, no strokes. I told the doc that there had been a big decline from January to March but he didn't mention the "steps" so I appreciate that info. I think I have to watch for the small artery disease because one of my carotids is 60% blocked. I'm taking baby aspirin and have changed my diet.

I see so many symptoms that are consistent with Pick's that I wonder if she could have that too? Do people ever have Picks and Alzheimer and Vascular dementia?

The typical symptoms of vascular dementia (VaD) as well as the progression of the disorder can be different from AD. From one paper I have, for example:

As the capacity for judgment and a remarkable degree of insight is sometimes maintained for a long time in VaD, patient often reacts to the awareness of deficit by extreme anxiety and depression, which are seldom present in AD. Lability and explosive emotional outbursts, episodes of noisy weeping or laughing may occur on minor provocation, often without accompanying subjective distress or elation.

Yep! That's me in a nut shell!!!!!!!!!!!!!!! and i mean NUT SHELL!

Jab
Sounds like me. today I'm extremely agitated. May be from sleep deprevation. may be the illness. I'm defiately agitated tho.

See, didn't even no I'd posted on this earlier, really having a bad day. To make matters worse, my oxygen level keeps dropping to 93 and that also disrupts my reasoing proccess.

[quote]Lability and explosive emotional outbursts, episodes of noisy weeping or laughing may occur on minor provocation, often without accompanying subjective distress or elation.[/quote]

JAB - You hit the nail on the head! She's the queen of emotional outbursts and catastrophic reactions. She also believes she's fully justified in whatever havoc she wreaks while in those states. Usually it's directed at me since I'm closest to her. I've learned to say, "I did the best I could." Then I divert her attention. I'm amazed by how well it works.

Tickles, I'm in a nut shell much of the time too.

Tickles, do you have a pulse oximeter to use at home? Are you on home oxygen? I also have lupus and lung disease and shortness of breath on exertion. My O2 saturation dropped to 93 after stairwalking on the pulmonary function tests.

Iris L.

I do. And I have. I have had to use theoxygen some at nighthere at my mothers, hardley ever at home.I used it last night on two, slept like a baby! That may be my big problem with the agitation too. My pain is also better this morning after sleeping. Thanks so much. Are you on steroids all the time? Let's keep in touch.

tickles, you sure have a big load on your plate. You need a great big ((((((HUG))))))

Kdoglady, I haven't had a chance to welcome you to the boards yet -- glad you found us! We're all here to help each other through the dementia wilderness.

You are right -- DPOA does NOT give you the same authority as conservatorship. In my mom's case, DPOA is sufficient. Her CT scan clearly shows vascular dementia, and she probably has some Alz mixed in. She was the one who first alerted us that something was wrong -- "my thinker is broken," she told me. I asked her that day if she was comfortable driving. She said, "No," and went and got her keys and handed them over. Within two weeks, we had spiffed up her 9-year-old but low mileage car with a wax job and new tires, and my niece, a high school senior who needed a car to get to work, was the proud new owner. Soon after she turned over the checkbook and all her affairs to my dad; now he has given them to me.

I also have DPOA for my dad, and I am already compiling the needed ammunition if I ever must go for conservatorship or guardianship (they are different in my state). A DPOA means I can act for my dad -- but so can he. So I have no way of protecting him from the late-night infomercial sales pitches, the decision to buy a house and let the current owners continue to live there for free, etc. A conservatorship will mean I can act for him -- and he cannot. You will see fireworks across the nation when that happens and he explodes, but one day it will be necessary.

Oh and PS -- does your screen name mean you are a dog lover as well? I have two young puppies which have also given me their DPOA. (wink)

Dear Tickles,
I was only on steroids for 1 week when first diagnosed with lupus, 16 years ago. I have been on Plaquenil and anti-inflammatory medsications all this time. I read that anti-inflammatory meds are helpful against dementia.

I'll try to be in chat room #4 around 5 pm Pacific Time.

Iris L.

Carolina, Thank you for the welcome. You've got me pegged - I'm the human slave of three dogs and a cat. I've also fostered many dogs, adults and puppies. I have three dogs because I kept the first and third of the pregnant fosters. After getting to know them while they raised their pups, I was too in love to let go. I've only fallen for one other foster - he was a long haired mini-doxie. I wasn't able to keep him though.

Conservatorship and guardianship are different here in Michigan, too. She doesn't need a guardian yet. When she does, I've decided it won't be me. Her behaviors are too triggering for me. I need to remove myself from as much of the direct stuff as I can. Conservators handle all the money and she needs that as soon as possible.

Getting the car away from her will be another fight. I could file a report with the state saying she's not safe to drive and they would investigate. But she can get my name if she tried. She wouldn't believe that I wasn't the one who reported her unless someone else took the credit for it.

My wife was dianosed with Frontotemperal Dementia 2 1/2 years ago. She was 62 at the time. I am now retired and am her care giver. It gets very tiring at times. The best information I have found is at the Alzheimer's Research Center. University of San Francisco. Found it online and I check it 2 or 3 times a year to refresh my self and keep updated. Twice a year we go to OSU Medical Center in Columbus Ohio for evaluation and progression of the disease. You probaly know by now it's terminal. 3 to 17 years with a average of 7 to 8 years. She has been on the Namenda and Excelon since the beginning. Many changes have occured in her and she is nothing like the engineer she once was. Her short term memory is gone. Patience is short. She can sleep 16 hours a day. Hardly ever says she is hungry. Repetitive in conversation and will watch the same TV show for hours on end. She depends on me for everything. Bathing is now becoming a problem along with femine hygene. Stuff I never wanted to know about. I take it 1 day at a time. And at night I sometimes cry.

Welcome to the board, Ed. Your wife is fortunate to have you, and we are fortunate to have you share your experience with us. Please come back often.

Ed, your story is so touching, I too cried for your lucky and lovely wife. I'm sure she knows how lucky she is to have you. Please join us anytime for a chat.

Ed, hi, and welcome to the forum. If there's anything we can do -- if you have questions, need sympathy, or just want a place to vent -- please feel free to start a new thread of your own. (Use the "start a discussion" button in the colored bar at the top of the page.)

One more FTD-Pick's resource:

http://www.ftd-picks.org/

Has anyone read the book "What If It's Not Alzheimer's? A Caregiver's Guide to Dementia"
Includes Vital Information on Frontotemporal Dementia (FTD)
edited by Lisa Radin & Gary Radin
foreword by John Trojanowski, MD, PhD
c. 2008

This is an excellent guide and resource.

Iris L.

Welcome Ed! Thank you for the tip about the website. Her diagnosis changed two days after she was diagnosed with FTD. Now they say its Mixed Dementia, which is a combo of Alzheimer's and Vascular Dementia. She has so many of the behaviors and the personality changes that it's hard to believe it's not FTD. I was told that once the physical violence starts, it will continue and probably escalate.
Kudos to you for being your wife's caregiver. I'm sure it wasn't what you had hoped for your retirement.
Iris, thanks for posting about the book. I'm going to try to get it from my library.
k

Dear Kdoglady: The frontal lobe of the brain can be affected by other dementias and many of the FTD symptoms will be present. Perhaps this is what is happening.

I wish you well from a former "UP" gal - I still think of Michigan as "home" even though I've been gone for most of my adult life. I miss my old hometown.

Johanna C.

I took my mother to a somewhat esteemed hospital geriatric clinic, told the doctor that my mother had suffered a frontal lobe stroke, and she told me how lucky my mother was. Really. My mom totally faked out the good doctor.

I've been highlighting and circling and nodding my head going through this thread. My mother was diagnosed with AD, but I always suspected FTD from her rages and poor response to AD meds. She's also had multiple TIAs besides the frontal lobe stroke, at least two heart attacks, coronary artery disease, yet the neuro(s) and geriatricians did not consider vascular dementia as a possibility.

She sleeps very little, and then only if medicated, and will not look at the tv or soothing videos unless it's to punch the screen. It's impossible to engage her in an activity and she freaks in public now, though demanding to go go go. I estimate she's in stage 7 (year 9, tho' I'm now recalling inappropriate behaviors years before), refuses most liquids and eats little, though her abdomen is distended and she's gaining weight. I can seldom understand her speech any longer, but she can still pull it together for doctor's appointments (answers them pretty well) and suddenly become sweetly cooperative. When they step out of the office she's immediately hitting and agitated to leave, but instantly morphs back to sweet and calm when they step back in. It's as amazing as it is frustrating.

Hello to you, Kdoglady. Sad for the circumstances that bring you here, but welcome and thank you for starting this thread that has prompted so much useful information from some wonderful people.

I'm surprised at the responce on my wife with frontotemperal dementia. Thank you all for your kind words. I need to get back on here more often and learn more about this site. The days are just so busy. I'm turning into a good worry wort. Always worrying about what food I can get her to eat. Medications and reactions. Disease progression. Medicare and bills. The list just goes on and on. Pauline has been taken with migraine headaches since January. She averages 1 a week. Doctors have me give her Naproxen. They do work but if she doesn't tell me right away when the headache starts it is much slower to help her and leaves her exhausted for 2 days.
Something that bothers me. I'm feeling less amourous toward Pauline. I take meds for high blood pressure and need to use Cialias for things to work when needed. This pill takes about an hour to work. Normally I can plan by her mood if she wants to or not. Not any more. The mood changes quickly and several times after I've taken the pill she is no longer interested. I'm not upset with her but I am no longer feeling desire towards her. It's a bit frustrating and I feel less of a husband and more of a caretaker. I know there is worse to come and I think I'm trying to seperate my emotions to do what I think best for her. It's difficult to do self anylis.
Again "Thanks for the responces" Ed

Ed:
I'm not the spouse of an AD loved one, but I have read here where there is a forum for husbands/wives taking care of their spouses.

Here is the link:
http://www.thealzheimerspouse.com