Caregiving resources for every stage of the disease.

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What to do...
KarenMB
Posted: Saturday, November 7, 2015 4:12 PM
Joined: 11/5/2015
Posts: 10


I'm 53 and mother of 9 year old and 4 older adult children who live states away.  I work full time as a (now untenured) teacher, which has gotten more difficult over time (for all teachers).  It requires a great deal of personal time to make it work and expectations have gone crazy to point where we all are so exhausted and fed up.  That being said...I've always had memory issues.  But over the past 4-5 years memory has gotten worse and is now impacting work and personal life.  I tried to get us rolling on long term care insurance but was already being seen by a holistic doc who at first thought distraction of ADD might have been the issue....he has since ruled it out based on my response to certain meds/lack of improvement.  He has since stated he firmly believes I have a form of dementia.  I believe this is now on record and most likely will impact getting long term care insurance.  I have not had memory testing through him or any other neurologist.  Dr. believes my stated experiences involving memory are all we need.  I have called my oldest son by my brother's name a number of times over the last few years.  I forget sometimes where our doctors /dentists are located and need to call my husband for directions if I can't find address in my phone.  I often don't recognize people who apparently know me well enough to know personal info.  I've used cover up strategies but folks are now on to me and my hubby and youngest child have directly seen/experienced the impact of my struggles.  I've burned food intensely while cooking because I forgot I was cooking and don't have sense of smell.  That happens regularly....even if I set a timer....    I've struggled recently while trying to get gas in my car...was pushing a sticker instead of a gas choice button and couldn't figure out how to get it going for a couple minutes.   Then I realized what an idiot I was.  i wonder how many people saw me doing that.  I could be let go at any point at work with no explanation beyond "we don't need your services anymore" (life of the nontenured teachers).  It's a concern now that I actively struggle to meet crazy work expectations.  My life has become all about work and is stressful. What to do?  We need my income but I don't think I can continue teaching.  Second opinion required for possible family medical leave act?   I have no clue about any of this but pretty much am trying to figure this out on my own.  Hubby makes a joke of me and of my concerns most of the time and I'm sick of hearing people tell me I'm just stressed out or that I DON'T have memory issues.  If they could be me for a day they'd know the reality.  I feel like I'm starting to crumble quickly and have no clue what to do next.  Suggestions?
KarenMB
Posted: Saturday, November 7, 2015 4:17 PM
Joined: 11/5/2015
Posts: 10


I forgot to ad dr. has put me on namenda XR about 1.5 months ago and recently added galantamine HBR.  I also have a minor thyroid issue which I take armour throid  and I also only have one kidney due to donation a couple of years ago.
Mimi S.
Posted: Saturday, November 7, 2015 7:31 PM
Joined: 11/29/2011
Posts: 6561


Karen,

As a former teacher, I know exactly what you are saying about stress in the classroom.

I have AD and reading your very informative posting is more than I can comprehend.

short paragraphs work best for most of us ADers.

 

I strongly disagree with the medical advice you were given.

 

You don't say where you live, but you need to find the most competent testing group in your area and go. Do you have a University with a dementia dept, or Teaching hospital?

 

Ask your librarian to get you a copy of Doraiswamy and Gwyther, The Alzheimer's Action Plan.  that is he work up you need. Even if you need an overnight stay, you need the best. You'll most likely have to wait several months for an appointment.

 

Meanwhile begin incorporating Best Practices into your life.

 1. Take meds when ordered.

 2. Strenuous physical exercise several times a week. You want to get your heart pumping at a faster than normal rate.

 3. Strenuous and varied cognitive activity. If you're still teaching, you're doing this one.

 4. Mediterranean diet. If this is a big change, easy does it. I also take Omega 3 and antioxidants. No smoking.

5. Maintain or increase socialization. Again, if you're teaching forget this one. Rest is what you need most. Dream on!

Do keep in touch!!!!

 


The_Sun_Still_Rises
Posted: Sunday, November 8, 2015 7:19 AM
Joined: 7/24/2015
Posts: 3020


I am so sorry that you are going through this. I don't have great access to my memory or words today, but I will share what I can. 

Some people try to get dx'd while working so they can go out on work disability (as opposed to social security disability). My understanding is that would pay more.

Social Security does have a "compassionate allowance" for Alzheimer's.

The way to get dx'd is a neuropsych test...which is a many hours long test that tests many areas of your cognition. 

All true dementias are progressive and fatal...so it would be very nice to learn that it is stress or depression, or some other thing causing it...but only the neuropsych can tell you that. 

After the neuropsych, if they find you are having trouble, the next step is a follow up with primary care, and then a neurologist.  You will want to test all the medical things that could cause the decline...such as nutrient defs, thyroid, etc.  Someone has a good list somewhere of all the things that can cause it.  The neurologist will order an MRI to rule out tumor or stroke...you will want to run that MRI by someone who can read it for Normal Pressure Hydrocephalus, which is excess fluid on the brain that can cause all the same symptoms. 

Once you have ruled out, and/or treated anything that can be fixed...then you will have a good understanding of where you stand.

Even with Alzheimer's, stress makes the symptoms soooo much worse...only that worse, clears up with the clearing of the stress.  Same with depression. 

The message that I like to leave people with, when they are getting dx'd is that there is plenty of good life to be lived after diagnosis. 

If it is this, then you will likely keep progressing...in which case, you will likely not remain working at some point.  Your family will have to make some very hard decisions about how they are going to face this disease...as will you.

The Best Practices Approach is to do things like eat a good anti-inflammation diet, exercise in a way that gets blood pumping, socialize, and I have added to get involved in things you are really very passionate about. 

I put lots of adaptations and work-a-rounds in place to help me get through my days.

And welcome to the forum by the way.  Feel free to jump in anywhere. 

Hang in there.


Jo C.
Posted: Wednesday, November 11, 2015 11:05 AM
Joined: 12/9/2011
Posts: 9048


Hello Karen and welcome to you.   I am sorry for what is happening and can imagine the stress and overwhelming worry this is causing.

I am an RN whose mother had FrontoTemporal Demenia and whose step-dad was diagnosed with Alzheimer's Disease.

It is extremely, extremely important that you do not stop with the holistic doctor for diagnostics and confirmation of what is suspected; you now need to go further.   There are many different conditions that mimic dementia but are not dementia and are easily dealt with.  You need to have all possibilities for that ruled out before anything else and this is going to require your medical team to be on the cutting edge for diagnostics.

 As an RN, I can tell you from my experience, the best approach for that would be a good MD, Board Certified in Internal Medicine.  A good exam as well as a plethora of blood tests and/or other tests may be run.  Thyroid disease IS very important in all of this as it too, under certain circumstances, can mimic dementia and I see you do have a thyroid condition.  Please, please do not short change this; it needs to be done.  The Internal Medicine MD will be your second opinion for ruling out other factors and Internal Med has additional education that puts them way up there for clinical issues that need to be diagnosed and especially for diagnostic enigmas. 

The next very best thing you can do at this stage in your presentation, asap, is to be seen by a dementia expert.  There is absolutely no shortcut for this.  Because of what is happening at this point, your best approach would be to see a Neurologist who routinely sees dementia patients as part of his/her practice; that is important.  A Neuropsychologist would be effective, however; in most areas they are harder to find.

NOTE:  It is absolutey crucial that you have this neurological expert because you will need an accurate diagnosis for type of dementia IF you have dementia, and a good Neurologist is best at making an accurate diagnosis.  They can also assess and rule out other causes for your symptoms if they stem from a neurological condition other than dementia.

There are multiple different types of dementia and treatment for one type can be contraindicated in another.   Even Aricept or other like drugs to slow down the progression of the dementia can be contraindicated and make things worse in some dementias; so this is extremely important for you to get that accurate diagnosis.

Also, the Alzheimer's Assn. has a Helpline that can be reached at (800) 272-3900.  If you call, ask to speak to a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia and all dynamics pertaining to that.  They can be extremely supportive, help to problem solve, provide a wealth of information, and can assist with contact information for helpful entities within your community.   There is no fee for this service.  It would be good for you to speak with a Consultant.

IF there is a dementia and not another cause for your symptoms, a good book to read would be, "The Alzheimer's Action Plan," by Doriswamy and Gyther; they are with Duke Universiity and it is a good resource.

Hang in there, do see the MD in Internal Medicine and a good Neurologist; you may not have dementia, and remember; there are no shortcuts when seeking your diagnosis.  You want your medical/diagnostic team to be on the absolute cutting edge of medicine for what you may be facing.  You will be very glad you did this.

Please do continue to come here and let us know how you are doing.  We will be thinking of you and we truly do care.

With warmest of best wishes coming your way,

J.


ndhme
Posted: Wednesday, November 11, 2015 5:25 PM
Joined: 5/31/2015
Posts: 1156


KarenMB

Jo C and Mimi have given you great advice.  The only thing I want to add is for you to check with your state teachers retirement board regarding disability retirement.  Find out what your options are.  My hubby was short 18 mos for retirement and I called our state board for information and found out he could apply for disability retirement (our local personnel manager only told him he had to resign since he wasn't eligible for retirement yet).  We already had a diagnosis so I turned in the reports from the neurologists for supported documentation.  He was put on disability within a very short amount of time and he was also approved for social security disability too.  Your teacher's retirement and social security are two separate programs.  Best of luck to you....


Mimi S.
Posted: Wednesday, November 11, 2015 7:23 PM
Joined: 11/29/2011
Posts: 6561


PS: The book Jo C mentioned: The Alzheimer's Action Plan tells what a good diagnostic procedure consists of. {And then what to do if ...} Nothing less is adequate. Jo C. mentioned the plethora of blood tests. Another poster mentioned the neuro-psych. Do read the book, ask for it at your library. Nothing but the best, even if it requires an over night stay.

Our help line 1-800-272-3900 should be able to give you the name of good testing sites in our area. An appointment may take several moths. Relax. That's frustrating but OK. Meanwhile you can begin on Best Practices, which I wrote about in a previous post.


alz+
Posted: Tuesday, November 17, 2015 1:04 PM
Joined: 9/12/2013
Posts: 3233


Karen MB -

so young. I remember when teachers were treated with the respect they deserve and wish that would become true again, and soon.

Just adding most people take so long to get a diagnosis, and even then... sometimes it turns out a diagnosis is changed. Some times people get help.

One of the most important things I learned was from Iris when I joined boards a couple years ago - STRESS lowers cognition by as much as 50%. It became obvious quickly that days when I could not figure out anything, and would get more agitated, and quarrel with people who did not get it or understand or believe me which made things even worse.

I am unable to do strenuous exercise but I focus on SLEEP, Peace in my home and life, lowered my expectations of other people to know how to help me, and go out in nature every day. One finds certain things really lower stress and they are free (usually) so spare no time giving yourself the gift of learning to relax and make decisions based on giving yourself time off from stress.

The financial impact of dementia is frightening to many of us. I am not sure your current doctor's diagnosis of dementia would invalidate a long term care policy, search that online or maybe someone will post who knows the ins and outs.

Please share again when you can. How you make your way out of this difficult situation helps so many others. Good friends here, people who understand and care.


angelmaria
Posted: Wednesday, November 25, 2015 5:28 AM
Joined: 3/11/2015
Posts: 6


I will call. but curious if any one knows anywhere the stages of ftd , I am a caretaker who is taking care of someone who has ftd, I want to understand whats going on. any info would be helpful

 


JeanetteD
Posted: Wednesday, November 25, 2015 7:33 AM
Joined: 10/27/2015
Posts: 38


I think you should also add to the best practices to try to get good quality sleep and stay hydrated.
alz+
Posted: Wednesday, November 25, 2015 4:36 PM
Joined: 9/12/2013
Posts: 3233


Jeanette - love to Marley the wonder Beagle!

Karen - checking in to see how you are doing.

My experience has been that getting a diagnosis is hard work. Getting a diagnosis often creates a shock period. Eventually one gets the business of living with a progressive illness in some kind of order and we move on to creating a calm safe space to live.

And then we do live. Once the stress of changing my life from what I hoped it would be to what it is, acceptance and more, my cognitive function improved. Right now I am living in a home construction zone with no kitchen, a husband who is stressed out, and winter coming on. By rights I ought me overwhelmed and half crazy. But I am doing ok because there is a comfort in understanding what is going on and learning the ropes.

I wish us all lots of comfort, love and courage.


alz+
Posted: Wednesday, November 25, 2015 4:46 PM
Joined: 9/12/2013
Posts: 3233


Angel Maria - There are a few posts on FTD and you might start a topic about living with the illness and being the support person for someone else with the illness. There have been other people who have asked about aspects of the illness and these message boards are a great place to make friends with others in the same situation.

I added the links below which may help you in finding the stage in which your loved one is in. My heart goes out to you.

 http://www.alz.org/dementia/fronto-temporal-dementia-ftd-symptoms.asp

http://memory.ucsf.edu/ftd/overview/ftd/progression/single

The pace of the symptoms and length of disease can vary dramatically from person to person. In general, each type of FTD follows a pattern where the symptoms seen in the mild stage become more pronounced and disabling over a course of 8-10 years.

Behavioral variant FTD

Mild bvFTD

In the first several years, a person with bvFTD (sometimes called Pick's disease or just FTD) tends to exhibit marked behavioral changes such as disinhibition, apathy, loss of sympathy or empathy for others, or overeating. Problems with planning organization and sometimes memory are evident, but the individual is still capable of managing household tasks and self-care with minimal help. However, impairment in judgment can lead to financial indiscretions with potentially catastrophic consequences. Social withdrawal, apathy and less interest in family, friends and hobbies may be evident. At times, they may behave inappropriately with strangers, lose their social manners, act impulsively and even break laws. But at this stage, the behaviors can often be managed with lifestyle and environmental changes (read our practical tips for ideas). A MRI image at this point will show mild atrophy in particular areas of the frontal lobes.

Moderate bvFTD

Over the course of a few years, the symptoms seen in the mild stage will become more pronounced and disabling. You might also notice compulsive behaviors like repetitive urination, hoarding or collecting objects, compulsive cleaning or silly repetitive movements (like stomping on ants). Binge eating may create weight problems and other health issues. The cognitive problems associated with dementia become more pronounced, with mental rigidity, forgetfulness and severe deficits in planning and attention. The MRI image at this point will show that the shrinking of the brain tissue has expanded to larger areas of the frontal lobes, as well as the tips of the temporal lobes and basal ganglia, deeper brain structures involved in motor coordination, cognition, emotions and learning.

Severe bvFTD

By this point the patient is experiencing profound behavioral symptoms (apathy, loss of empathy, disinhibition) in association with language difficulty and memory loss. Although it can vary widely, the time from the first symptom to the end is typically about eight years, whereas the time from diagnosis is, on average, about five years

 

 

 

 


Iris L.
Posted: Wednesday, November 25, 2015 6:37 PM
Joined: 12/15/2011
Posts: 15449


Here is a book that may help:

What If It's Not Alzheimer's?: A Caregiver's Guide to Dementia 

by Lisa Radin

Iris L.


angelmaria
Posted: Thursday, November 26, 2015 3:10 AM
Joined: 3/11/2015
Posts: 6


thank you very much. one would think I was crazy if it was not in print currently started stepping on ants. thanks again.
LightFoot
Posted: Saturday, December 12, 2015 7:50 PM
Joined: 12/12/2015
Posts: 1


Have you thought about researching how your gut health influences the health of your brain? I'm going to add a link below to get you started. 

http://brainhealthbook.com/leaky-gut-diet/

My story: I'm 53 and after the age of 50 I started to feel like I had serious brain fog. I had a hard time remembering words and also keeping organized. I felt overwhelmed. The doctors said nothing was wrong with me but I didn't believe them and started researching my symptoms. I had a holistic doctor do a blood panel that said I was deficient in B12.  I gambled that the answer to my problems lived in my gut (although I had no startling gut symptoms). I started working on healing my gut with supplements, going on a clean food diet and avoiding all foods that were prone to causing food sensitivities (gluten, dairy, soy, corn, eggs). I did heavy doses of probiotics and took enzymes with all my meals. My brain fog is now non-existent and my energy level is back to my normal, energetic self. This is just a thought for you but certainly worthy of looking into. My journey wasn't an easy one but doable if you stay focused, determined and willing.

Best of luck to you.

alz+
Posted: Saturday, December 12, 2015 8:53 PM
Joined: 9/12/2013
Posts: 3233


Lightfoot - Interesting!

Yes, we all know we have a "gut feeling" or when "my gut told to not go there". in fact is has a brain of is own. Also recently scientists have found how our hearts have a brain too.

My intuition tells me as ALZ progresses we use out gut and heart brains more, we become very sensitive to the energy of those around us. We  have a conscious awareness different than being all in the head. Another way of being ever more in the moment. That is really cool that you healed your guts and your mind cleared too. May you remain in good health!

 


Iris L.
Posted: Saturday, December 12, 2015 11:56 PM
Joined: 12/15/2011
Posts: 15449


Welcome, LightFoot.  People over 50 lose intrinsic factor and are unable to absorb vitamin B12, a deficiency of which can mimic dementia.  Has your vitamin B12 level returned to normal?  If not, you might need vitamin B12 shots or sublinqual B12.


Iris L.


 
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