Frontotemporal Dementia Support

May 16, 2012 in Our Blessings with 2 Comments

Being a caregiver for someone with Frontotemporal Dementia (FTD) is overwhelming. The emotional and care support takes a daily toll and support from anyone is welcome.

Dementia Caregivers

I would venture to say, that until a loved one succumbs to one of the many forms of dementia, most people have no idea how devastating the work load needed to care for each patient. Twenty four hour care is often needed every day. Taking over all the patient’s care from cleaning, dressing, feeding, safeguarding, medicating, entertaining, picking up what’s thrown down on the floor, cleaning the food thrown on the floor, cleaning up after incontinence, laundry, doctor’s visits, etc. Everything we take for granted are now done by dementia patient caregivers.

Caregiver Support

Welcome are the people who give us caregivers and patients their support. Neighbors who search the streets when the patient wanders, social workers when desired (and I mean desired as these people can be real pains), family and friends, church members, and occasionally the random person who reaches out because they too are experiencing or have experienced this devastation. The public offices of police and fire whenever needed also provide support. Other dementia caregivers also provide support by providing personal experience and insight whereby we recognize that no two patients are alike, or strikingly how they are.

Thank you to all the people who have support Victoria and I; thank you too for the support given other caregivers.

Adding Dimension For Dementia Patients

May 3, 2012 in Our Blessings, Treatment Options with 8 Comments

Too close to see the need. I am blessed that our local church ladies hold a weekly women’s Bible study where Victoria is welcome to attend. When I’m able to get her to the meeting, the ladies love her unconditionally caring for and involving Victoria in the study. The ladies support touches me and gives me a few hours for myself. This provided Victoria an avenue of normalcy for what must be an internal prison of confusion and frustration. Reflection on this I realize that my efforts day by day are to provide for my wife whatever I am able. This outing is one, exploring how to better her life is another. Sometime our efforts to add dimension for our loved ones is intuitive, other times not.

Patient Care

The ongoing daily patient care involves the obvious of feeding, dressing, cleaning, and so on. Add to that the hugs, kisses, back rubs, and attempted communication that I feel has to be part of my care plan. Yet there is more to adding dimension.

Net Flix Vs Media Center

I subscribe to Net Flix and use that service to provide movie entertainment for Victoria. However, she’s just recently lost more cognitive ability and is experiencing difficulty using the remote to select other movies. I recall in the seventies my workplace piped in music through a cassette carousel player and with my son’s help we are building ourselves a computer Media Center whereby I can load Victoria’s favorite movies and set them to play continuously similar to the the music ideal. Here however I need to convert our movies to a format that supports our plan. It’s worth my efforts to entertain my wife. By the way, choices of movies are important. Disney childrens movies, Howl’s Moving Castle, Coraline, adventure, Narnia series, even action that’s not bloody seem okay. I’ve concluded tear jerkers emotionally upset Victoria and I’ll avoid these. Terabithia was a bad choice. I’m constantly telling Victoria that all the movies are make believe, not real, and only entertainment. Bless her heart, Victoria does get involved in story lines. As for books, Victoria doesn’t have the ability to focus long enough to be entertained.

Coloring Books

My carpet is a mess from the crushed crayons under Victoria’s feet. I don’t care. It dawned on me a few months ago that coloring books and crayons may help Victoria pass time and allow her some creativity. It has served us well. Some coloring is creative, others focused upon a single color. Yet Victoria gravitates to these regularly throughout the day. If the picture doesn’t make sense to Victoria, she will tear out portions and try to line them up in a manner that does. It’s okay. After my first bout of frustration I realized what she was doing and I now try to explain what it is. Once Victoria understands, she’s changes her choices of color and proceeds to put the picture into perspective.

Be it music, movies, Bible studies, coloring, a zoo trip, or weather permitting letting Victoria walk in the park, I’m trying to provide her dimension. I’m sure others caring for dementia patients have discovered as I have what tends to work for their respective loved ones.

Music Therapy and Dementia

May 2, 2012 in Compulsive Behavior, Treatment Options with 8 Comments

Music has been said to tame the wild beast, promoted as a precursor to learning multiple languages, entertained us for eons, and recently proffered as a medium which Alzheimer’s patients respond with rational, cognitive communication. Perhaps not just Alzheimer’s. In the previous post I presented the situation where Victoria was given a sleep aid and she responded to a praise music album with singing and later coherent communication.

Music Therapy and Dementia

There’s reason to believe that music uses different parts of the brain. Where patients have experienced brain damage which resulted in varying degrees of dementia communications may be possible from other parts of the brain that remain undamaged.

Frontotemporal Dementia

Followers of this blog realize that Victoria suffers Frontotemporal Dementia (FTD) which is also known as Pick’s Disease. Even so, other sufferers of dementia from Alzheimer’s, Senility, traumatic brain damage, Parkinson’s Disease, and others may or may not benefit from music therapy.

The Alzheimer’s Story

I had read an article and was reminded about it by my son. The article presented the situation where visiting family members put earphones on their father and he quickly became animated singing along with the music. After the music their father remained lucid and able to communicate for a while. The Alzheimer’s story and Victoria’s response the other night are worth further exploration as it pertains to Frontotemporal Dementia. I put on Victoria’s favored praise CD last night as we turned in.

First Night Experiment

Without sleep medications I put Victoria to bed and played her music. Objectively she remained still, sang only a few verses, and was otherwise uncommunicative. The first night experiment had mixed results: Victoria did remain still and slept until 6am, but did not talk. The sleep was a contingent block of time and I can’t complain. I’ll try again tonight and see if we can again get an acceptable period of uninterrupted sleep. I’ll continue this pattern for at least a week with hope that music therapy will benefit Victoria’s dementia. I’ll feel rewarded if we only achieve consistent sleep.

Frontotemporal Dementia Update

April 27, 2012 in Compulsive Behavior, Symptoms, Uncharacteristic Behavior with 0 Comments

Victoria has continued to decline in her cognitive abilities. We don’t have medications to cloud her thinking, nor has she shown positive responsiveness when on Ambien sleep aide. The symptoms of the Frontotemporal Dementia (FTD) continue to whittle away at my wife, friend, confidant, lover, and faithful companion.

Daily Effects of FTD

Compulsive focused behavior is among the daily effects of FTD that plagues Victoria. Sometimes we are blessed when, for whatever reason she pops out of the cloud and communicates as if nothing is wrong. We family and friends would love to see God’s miracle in her life, but realistically we support and pray. Supporting Victoria is a full time commitment gladly given. Victoria continues to amaze, bewilder, and cover all aspects of emotions; even with the frustrations, a marvel to behold.

Sleep Disorder

Victoria hardly ever opts to nap during the day and getting her down for the night can be challenging. Daytime naps would help me out greatly, but I’d be happy with a continuous six hours of nightly sleep. Lately this sleep disorder has been a problem. Ambien side effects concern me so I’ve avoided giving Victoria this sleep aid. The night before last, I tried for six hours to get Victoria down for the night. After she insisted on getting up within fifteen minutes of getting her down, we’d try the routine again each hour. Finally I resorted to a half dose of Ambien. It was enough to make Victoria wobble when I tried to take her to bed, but it appeared to wire instead of help her sleep. At her insistence, I put on some Praise music. Victoria slept after singing along with the entire CD, and conversing with me about future events. My son the next day reminded me of an Alzheimer’s report where patients became cognizant after listening to music. Ambien or music? I’ll have to check out music.

Feeding

Doctors were concerned about Victoria’s weight loss when she dropped fifty pounds. When we discussed how I locked the refrigerator and put sweets out of reach to prevent compulsive eating, the physicians were glad to hear that Victoria was eating adequate calories to maintain a healthy weight. Choking is a constant concern when Victoria keeps stuffing without swallowing the food in her mouth. Feeding takes on concerns for calorie intake, food choices and her willingness to eat those foods, preparation, and servings. I now cut up her food much like I used to do for our children when they were young. Some days Victoria will eat very little, others more. Some foods have to be hand fed to prevent choking.

Incontinence and Cleanliness

Victoria’s incontinence is worse. I’ve purchased and placed a waterproof sheet on the bed. Now my daily management consists of trying to keep her clean. Soiled pants and carpeting are the hardest non personal things to clean. Inappropriate behavior common with brain problems has manifested itself through Victoria’s refusal to sit on the toilet, and her compulsive discarding of toilet paper on the floor after her attempts at self cleaning. Incontinence and cleanliness constitute the single major element for providing care; care where my children are reluctant to help.

Therapy of Music

I pointed out before the affects music has had for some Alzheimer’s patients. I’m planning on more bedtime music to test this hypothesis and see if Victoria has any benefit. The therapy of music is an interesting concept that will entertain at least, and provide benefit at best. Can’t lose.

FTD: Medication Test Results

March 8, 2012 in Treatment Options with 7 Comments

Previous posts have detailed the doctor approved experimentation with Ambien, a sleep aid, as well as the discontinuance of other medications which in themselves may impair memory. I’ll share my observations.

Removing Paxil and Bladder Control Medications

Paxil was diagnosed for depression in the later 1990s; misdiagnosed in my opinion. No objective testing was done to determine if Victoria suffered Frontotemporal Dementia (FTD) or Pick’s Disease, Alzheimer’s, or any other brain influencing disorders. After discussing the memory impairing side effects Victoria’s doctors agreed that removing Paxil and bladder control medications by tapering off first may have memory benefits.

Side Effect Observations

We watched Victoria for signs of depression or agitation. We also watched for an increased need for Victoria to urinate. The observations a week after Victoria’s system was free from medication demonstrated that Victoria didn’t suffer any side effects. Obviously removing Paxil and bladder control medications demonstrated two conclusions: the medications didn’t help, and doctor’s continued focus on depression over the years demonstrates an utter lack of objectivity.

Ambien For Memory Enhancement

We needed a sleep aid for Victoria and found that for a lack of better terms, during twilight sleep Victoria could understand, speak, and exchange ideas. Ambien was mentioned by my Naturopathic physician as having positive reports in the memory recall of Alzheimer’s patients. With Victoria’s physician’s permission we experimented with various doses of Ambien for memory enhancement.

Ambien Test Results

Except for a few promising days which Victoria was more responsive, there hasn’t been enough consistency to validate a positive Ambien test result. I’m leery about testing around the clock and concerned about addictive characteristics of Ambien. Perhaps after our next doctor’s visit I’ll reconsider.

If nothing else, I’m satisfied Victoria is medication (chemical) free.

Alzheimer’s Medication Problems

January 20, 2012 in Symptoms, Treatment Options with 7 Comments

Recent events have caused me to believe some medications are creating more harm than benefit for Victoria. The issue is identifying what may be Alzheimer’s medication problems, or the effects of the disease itself. After missing a couple daily medications, and using a prescribed sleep aid, I have observed a woman who has become less respondent, less able to communicate, and deeply withdrawn.

Frontotemporal Lobe Dementia

Call it Frontotemporal Lobe Dementia, simply Frontotemporal Dementia, FTD, or Pick’s disease, the long term effects caused by the diminishing frontal lobe of the brain are often subtle. In fact it took about ten years for us to get a proper diagnosis for Victoria.

I’ve watched Victoria go from a very strong, compassionate, and competent woman who balanced a nursing career, motherhood, marriage, friendship, and faith to her current totally dependent shell of who she had been. Tear. One of the early symptoms attributed to FTD is the inability to hold a job and in the later part of the nineteen nineties Victoria started moving job to job. Where upon Victoria had never had problems in the past, she was now experiencing workplace conflicts. Then, one day without any signs of distress Victoria collapsed on the floor crying non-stop. A trip to the hospital and Victoria was put on Paxil for depression.

Depression was, I now believe, the first misdiagnosis. I believe the effects from the diminishing frontal lobe caused the frequent pattern of job changes and a misdiagnosis of depression instead of Pick’s disease. This was approximately 1999; and we didn’t get a definitive diagnosis of FTD until 2009.

Hidden Symptoms

The prescription Paxil seemed to control Victoria’s “depression.” When crying symptoms increased, doctors doubled the Paxil. Note that there were never any Radiology or Laboratory testings given to find other causes of Victoria’s condition. Not one primary care physician sought to look for other causes until Victoria’s compulsive behaviors, traffic accidents, continued job problems, and obvious memory issues were so acute we desperately sought help. Granted, my honey is very intelligent and provided appropriate responses to orientation questions. Still, it’s as if hidden symptoms prevented doctors from thinking, from exploring real underlying factors.

Brain Routes

With the diminishing frontal lobe we have experienced changes of behavior, compulsiveness, memory loss or inaccessibility, incontinence, and more. Obviously the brain routes have been effected. What is amazing is there are times when Victoria can communicate, find words, coherently compile complex sentences, and otherwise appear normal. This occurs when Victoria is nearly asleep; when brain routes involving the subconscious are active and can tap areas of the brain the frontal lobe cannot. When treating Victoria with a sleep aid, it appeared there were a few occasions when she again clearly articulated her needs. I’m suspecting the sleep aid brought Victoria into a twilight type sleep and before she actually did sleep, talked.

Medication Change

Unfortunately, the sleep aid was too much most of the time; leaving Victoria like a vegetable. So I wondered, since information is still in the brain, wouldn’t it be nice if we could reroute the brain paths much like siezure patients relearn after having their brain spheres split? I mused about this with my personal physician and after brainstorming I began to suspect that both the Paxil and the sleep aid may be impeding what remains of Victoria’s reasoning and communications. Is it time for a medication change. Like I mentioned earlier, after forgetting medications on a couple days I saw a more communicative Victoria. Yesterday I discussed this with Victoria’s doctor. She found merit in my observations and agreed to reduce and eliminate the Paxil on the premise that it may be the wrong drug for an initially errant diagnosis. Further, my naturopathic physician had read about the sleep aid Ambien having positive results for Alzheimer’s patients. Discussing this with Victoria’s physician we decided it was worth a try.

The experiment has begun. I started Victoria’s first dose of a smaller dose of Paxil. Nothing is one hundred percent, but I’m sure there have been Alzheimer’s medication problems with Victoria’s care. With the differences of Frontotemporal Lobe Dementia we are proactively attempted to improve Victoria’s lot with medication changes; Ambien hoping to capitalize on Alzheimer’s benefits, and a Paxil reduction believing this drug my be causing more problems than allegedly fixing depression. And before anyone gets anxious of our plan, I will watch to make sure Victoria doesn’t show symptoms of depression, or react to the Ambien by wandering, cooking, etc. I know the trouble things to watch. I am hopeful Victoria will benefit from this and have a better quality of life.

Pick’s Disease & Mentally Competent

January 12, 2012 in Compulsive Behavior, Symptoms, Treatment Options with 2 Comments

Try to care for your loved one and all of a sudden you have doctors clamming up, insurance plan representatives, and others saying they won’t talk to you because of HIPPA regulations. HIPPA hell, I’m ready to march into offices and become very belligerent. Let’s face it, Pick’s disease doesn’t mean the patient is mentally competent, or incompetent. Like any dementia from disease or trauma, there is more to the patient then what is accessible. Victoria is very intelligent.

Do The Right Thing

The government has become so intrusive, rational care providers are becoming fearful that normal patient discussion will result in their being sanctioned professionally and monetarily. Their solution, harass family and demand actions from patients who may be unable to give proper consent. The consequences of fearful care providers is a failure to properly discuss patient symptoms, treatment options, care alternatives, etc. Care providers are failing the patients and their families.

Patient Permission


“Let me speak to your wife,” I’ve been told when calling on her behalf. Sometimes my honey can, other times she can’t understand what’s being asked, or provide an appropriate response. Yesterday, Victoria was very coherent and better able to express herself for several hours early in the day. Today, her most frequent word is “cookie.” So depending on the day, the hour, or minute, Victoria may or may not be able to communicate her patient’s permission for a health care professional to speak to me. Basically I’ve argued for the professionals to do the right thing. It’s like talking to a carrot.

Power of Attorney

Every other communication now involves the question, “do you have power of attorney?” To be honest, I have it. I’ve had it for months and because it’s become misplaced, I had Victoria in a lucid moment again appoint me her POA. So we’ve two documents in the house providing me this authority. I argue that I don’t need a POA to speak for my wife. The Social Security Administration would tend to agree and have argued on my behalf with the result that Providence Medicare Advantage capitulated. However, after the one capitulation, Providence again started their game.

Fearful Medical Treatment

Recently Victoria’s PCP notified me, with full knowledge of Victoria’s condition, that I had to provide a power of attorney or she couldn’t discuss my wife’s care with me. Who does the doctor expect to discuss care with if not me? She needs to give the government the finger and do what is right. Government needs to be prosecuted for practicing medicine without a license. This would be personal felonies for individuals, and organizational felonies for the government and offices which impede appropriate care for patients. I’d love to have the legal credentials to take this to court. Doctors and other health care professionals must not work where they are fearful of rendering medical treatment because of HIPPA.

Dementia Patients Not Incompetent

Just because someone has some form of dementia, it doesn’t mean they are incompetent. At times, or as the process progresses, dementia patients are not incompetent. For the times when they are incompetent, or simply can’t find the words, we family or others must speak for them. HIPPA must be resisted when it comes to our providing knowledgeable care. Doctor’s ET AL, do the right thing.

Perchance To Sleep

December 30, 2011 in Symptoms, Treatment Options with 2 Comments

Sleep has been an issue. It started having a compulsive nature to it for a while, yet as Victoria’s FTD symptoms progressed, it became difficult to get her to bed. Getting Victoria to stay in bed was a further complication.

Dementia Sleep Disorder

Be it FTD, Alzheimer’s Disease, Traumatic Brain Injury (TBI), or other dementia related issue which disrupts sleep, its something we need to overcome so our loved ones get enough rest. Or as I look at it, perchance to sleep, and dream. Victoria’s compulsive focus appears to feed her dementia sleep disorder.

Medication Experiment

When the matter was addressed with the primary care physician, she prescribed a sleeping aid that was first tested at a half tablet, then a full tablet. Neither seemed to have the desired effect. In fact the doctor was concerned that even the half tablet dose would knock her out where ever Victoria was…bed, chair, or toilet. You get the idea.

When reported, the PCP decided to try one and a half tablets, to be increased to two if needed over several weeks. Last night we tried the one and a half tablet medication experiment. Victoria didn’t show signs of fatigue but was talked to bed around 11pm. She slept through the night snoring and talking in her sleep. Funny how in her dream state how clearly Victoria can express herself. The medical experiment seemed to work. But I’m not sure about the long term affects.

Unexpected Side Affect

Victoria’s sleep seemed fine. However, her day was estranged, aloof, unbalanced, and resistant to care. This may be an unexpected side affect and needs to be evaluated. Given the possibility that the sleep aid has caused this behavioral change, I’ll not use it tonight and then evaluate tomorrow’s behavior patterns to see if there is a correlation.

I’m building up Victoria for bed time in an hour or two. I am hopeful that Victoria will be more of herself with the sleep aid out of her system.

Dementia Sleep Problems

December 29, 2011 in Compulsive Behavior, Symptoms, Treatment Options with 0 Comments

For a long time now, Victoria’s sleep patterns have been driving me crazy. I’d like for her to go to bed at night and wake at a decent time in the morning. As you might gather from my wish, this has not been the case. Victoria’s dementia sleep problems affect my own, and it hasn’t been easy.

Sleep History

I’ll chronicle some general events which will picture Victoria prior to her symptoms becoming more acute. From there we’ll transition through behavioral changes which led me to try a medicated approach.

Normal Sleep

A little over three years ago, based upon my best recall, we typically would go to bed at 10pm and sleep through the night waking around 6am. Eight hours sleep was normal.

Compulsive Sleep

As Victoria’s Frontotemporal Dementia symptoms became more acute, she took on a compulsive approach for going to bed. She would see the clock reach 10pm and stop mid activity and go to bed. That compulsive behavior didn’t alter our normal sleep pattern and had a cute factor which didn’t cause me concern. Transitioning from normal to compulsive sleep was just the beginning.

About two years ago compulsive sleep took another turn. After sleeping for even short periods of time, Victoria would wake and get up. She took on a compulsive focus to stay up. It would take hours to convince her back to bed, many times to start again in an hour or two. Early in this phase I’d try taking advantage of her compulsive focus and tell Victoria it was after 10pm and she’d respond by returning to bed. As time progressed the compulsive desire to bed by 10pm passed and so did my argument.

Sleep Remedies

I received suggestions from friends and relatives for remedies. Warm milk, oatmeal cookies, turning down lighting, calming music, and none of seemed to work. Victoria herself took on playing inspirational music as she went to bed, sometimes going to sleep, sometimes returning to the living room instead of sleeping. Sleep remedies weren’t working. I decided to speak to Victoria’s doctor. The doctor suggested all the remedies we had already employed with no avail. A prescription was provided with instructions to use a half tablet, and if it didn’t work after a couple weeks, progress to a full tablet. The doctor was concerned that the medication would cause Victoria to pass out in her chair.

Many weeks later and the sleep medications don’t seem to be working. After speaking again with Victoria’s doctor, the dosage was increased by another half tablet. I gave Victoria her first new dose last night. I still didn’t get her to bed until 11:30pm but she slept through the night. Are the dementia sleep problems resolved? I don’t think so. Am I getting assistance from medicine? Maybe so, the next weeks will tell.

Medicare Punishment

December 28, 2011 in Insurance, Treatment Options with 0 Comments

When my wife was awarded her disability, she qualified for Medicare. I had to choose her plan and adopt a prescription plan or be penalized a permanent 10% each year. Upon trying to evaluate the many plans it became clear that Medicare is a piece of shit not worth the paper to clean it up. Obviously it was created by morons who intended the users to suffer Medicare punishment.

Medicare Financial Obligations

Okay, I was grateful to receive Medicare for my wife. Her Frontotemporal Dementia needs treatment, as do other ailments and we were hard pressed to cover medical costs. The beak down of support is as follows:

  1. Doctors, treatments, and prescriptions rendered somewhat reasonably up to a certain dollar amount
  2. After the first tier dollars, screw the user with costs to wipe out savings or prevent further care
  3. After the second tier, after milking the users who can survive the second tier, they can again get more care

Let’s face it, if someone needs Medicare they likely can’t afford the second tier. Obviously this is Medicare punishment.

The problem with Medicare financial Obligations is that the patient or their representative often isn’t aware of the dollar burden until a service has been rendered.

Providence Medicare Advantage

I was exploring information on the Internet seeking ways to help Victoria. I found suggestions that bathroom equipment and patient lift chairs might be covered under Medicare. I called Victoria’s PCP and asked if this was covered under the Providence Medicare Advantage plan. I was told that yes they were covered but first required a physical therapy assessment.

Providence Home Health sent a physical therapist to my home. And guess what? I am now on the hook for $230 because the Providence Medicare Advantage plan doesn’t cover the visit. Nor does the plan cover the durable medical equipment (DME) as it must be paid out of pocket under tier two.

Financial Relief

The physical therapist observed Victoria’s inability to communicate, here compulsive focus, watched her walk to and from the bathroom, and in that process suggested that I might be able to be compensated for providing Victoria’s care. It was further explained that a more costly health care plan might provide greater financial relief for services. Evaluations for these services are again uncovered services and Providence will be expecting payment.

As a conclusion of the therapist‘s visit, he is suggesting that Providence Home Health send me a financial assistance package to determine if they will provide services and equipment without copay requirements. Quite honestly I’ll be surprised if these actions will circumvent the Medicare Punishment.

Note to PCP: please don’t make referrals without informing patient/representative of the expense.

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