FTD – R and D? Finally! Happy New Year Arnold!

So here we are. 2015. Happy New Year! I hope that FTD is kinder to you this year. It seems like we are finally seeing a little money being made available for research into defeating the invader into our lives – FTD. Check out this link to further details:

http://www.healthline.com/health-news/nih-grants-30-million-to-study-frontotemporal-dementia-011015#1

Arnold Pick2As you may know, Arnold Pick is arguably the most famous person to describe a premature kind of dementia that we now know as FTD. He called it Dementia praecox” In 1891, Dr. Pick described rapid cognitive disintegration, often beginning in the late teens or early adulthood.  Nowadays, frontotemporal degeneration refers to a group of conditions. But at the end of the nineteenth century, work was just beginning on discovering more about this group of disorders, which originally were thought to be psychiatric in nature.

There had been many other physicians, neurologists and psychiatrists all the way back to 50 B.C.E, when a man called Lucretius used the term  “dementia” to describe “being out of one’s mind”.

LucretiusSo, after two thousand and sixty-five years, it’s probably about time for some some money to be put into research, since so much is still unknown about this demon that we battle every day. We hear about Alzheimer’s Disease ad nauseum. I truly understand that caring for anyone with any kind of cognitive disorder is draining,  deflating, soul-destroying. Believe me I know. But the powers that be really need to wake up to the fact that the vast majority of people who develop Alzheimer’s Disease are elderly and require a completely different kind of care to those amongst us who have three children under the age of ten, or teenagers who are grappling with the fact that their parent is not their parent anymore.

Awareness is paramount to the cause of those young men and women who are the partners, wives, brothers and sisters of those afflicted by the bastard disease. Those people who have had their lives snatched away, chewed up and spit out so that their loved one is now an infantile version of their former self. Those beloved ones who are thirty-some, forty-some and fifty-some years old and who will never again understand their role in life. It’s not as rare as one might think or be led to believe by the article above.

Lucretius knew. Arnold knew. They just didn’t really know what they knew then. I would love for them to be spirited to the here and now and see how epidemic their discoveries have become. Of how millions of lives are affected. I wonder what they would think of the vast array of technologies and advances available to us now and despite our knowing much more than they did then, we still don’t know enough to make it go away. Maybe we would know more if we dedicated more time and resources. If we threw everything we had at the bastard disease. If politicians were less concerned about where their next “business’ trip is coming from (or going to). If big pharma were less focused on making money selling their wares and more focused on finding cures. If governments (and not just ours) were dedicated as if it were their own spouse that needed the help.

The zeitgeist needs to change. If you have loved or even just met someone for whom FTD is a reality, you know that social perception and awareness is light years behind the reality.

FTD is occurring globally on an ever-increasing scale. Social media groups are popping up all over the place, with more and more new members seeking support from one another. There are scant resources to help them. They only have each other. The lack of knowledge, the guilt, the resentment, the love. It’s all there. People don’t know which way to turn. There are people who gladly share their knowledge or experience, but sometimes it all seems so futile, Is this what it was like for those people who experienced those things of which we are now so accepting but were the FTD of their day? HIV/AIDS?  Unwed mothers? Homosexuality? I realize that those things also carried (carry?) social stigmas, but FTD can do that too.

Friends, or those we once thought were friends, shy away, not calling or coming to visit. Making excuses not to go out together. It all comes down to fear. Fear of the unknown, of the “I don’t know what to say”. Of feeling embarrassed.

Sometimes I wish someone famous would develop FTD. Then maybe people would sit up and listen. Not that I would actually wish the bastard disease on my worst enemy of course, but anything that would bring a huge public eye-opening about what is happening would be a major breakthrough.

We’ve all heard of Arnold Pick, but most people have not. If he were here now, more glamorous and in a position of power, people would really sit up and listen, right? Right, dream on. I guess there are too many people and groups with vested interests in too many other things.

I always think it’s sad that money dictates how much attention, time and resources are dedicated to one thing or another. If we are humanists, shouldn’t we be doing these things for the greater good? Of course, the researchers all have families to feed too, so I can’t begrudge them that. Just don’t want to line any fat cats already-bulging pockets. Anyway, not to be ungrateful, I think it’s wonderful that $30 million is dedicated to our cause.

To end on a lighter note,  here’s a little dementia humor…….

Return to Rita

 

 

FTD – Happy Anniversary, you bastard

wedding photo

Today is the 38th anniversary of our wedding. In 1976, we were bright-eyed and eager to see what life had in store for us. I am so glad we didn’t know that FTD was going to invade our lives and destroy what we had built for thirty-six years.

I cried today. That’s not really unusual. I was sad and my dog brought me his bone. That made me cry. I guess it wasn’t far away, under the surface and that simple act of innocent kindness brought it out. It was then that I realized that our anniversary is still significant to me, even though my husband died two years ago. I realized that nothing –time, distance or circumstances will ever change that. People ask me if I’m dating – “You’re still young!” and look at me strangely when I say that it never crosses my mind and I don’t see a time when it ever will. Spending almost forty years with someone that you love so unconditionally and they you, makes that unthinkable.  The things one has to do and endure when caring for someone with FTD  have somehow made me more detached from reality. I can engage in the stuff of life – fun, laughter,smiles, sadness and joy. But I am so changed by my experience that I am almost a different person entirely than that hopeful, full-of-dreams girl that I was in 1976. People have been on the receiving end of this new person and are sometimes shocked I think, by how different she is from the old me.

FTD destroys lives and dreams. But it never destroyed my love. Somehow, I was able to separate the love from the horror. At times, it was as if everything that was happening was not happening to us. I have written about love and FTD many times. It was a driving factor in my FTD experience.  I cannot imagine how I would have coped without it. My own love for my husband, the love I knew that he still felt for me, even though it was masked by the bastard disease, and the love I had for our family as I witnessed their pain. The journey was like walking a path to a destination you never want to reach. As painful as it is, you know that reaching the end will be even more so. And there is nothing you can do to stop the relentless onward march towards your destiny.

In 1976, I imagined my destiny to be somewhat different. White dress, first waltz, flowers and cake. Handsome husband, first home, fun, fun, fun. He only forgot once, after about 3 years. He remembered after he had dropped me off at work. I got the best bouquet and champagne dinner that day 🙂

A year before he died, FTD made him forget too. The bastard disease created another hole in his brain and our anniversary slipped through. That last anniversary we were together, our son came round with a card for us and my husband was devastated that he had forgotten. So my son gave him the card to give to me. That made him feel better that he thought I thought he’d remembered.  Even in the depths of his confusion, he felt the love. One month later, he moved into his first residential home and ten months after that, he died.

Of course, the thirty-eight years were not all fun, fun fun, even before the FTD. We had challenges, just like everyone does. At first, when FTD came along, we carried on as ‘normal’. As you know, the onslaught is so insidious, it is shocking at times to realize that things have changed. Then suddenly –Bam! Your groom/bride can’t speak properly anymore. Or they’re hiding things, or spending all your money. You are inexplicably broke and getting thrown out of your house. Or you are bailing your loved one of out of jail. Thankfully, those last two things did not happen to me, but they do to someone who cares for a person with FTD. The bastard disease has a blatant disregard for propriety, respect for others or socially acceptable behavior.

When you make those promises -“In sickness and in health”, wedding-rings-on-handswhen you’re twenty years old, you don’t really understand exactly what it is you’re signing up for. So when the ‘sickness’ is FTD, those promises are really put to the test. But for me, it was not something I had to think about. Maybe I have innate qualities that I didn’t know about, I’m not sure. But I really don’t think I did anything heroic, or anything that all of you are not doing for your loved one.

So what is the point of my blog today? Other than catharsis, I wanted to share how FTD has uncovered things about me that I didn’t know before. In 1976, I wasn’t a nurse, wasn’t a mother, wasn’t a wife until October 30th. I was twenty years old. No-one even knew what FTD was then. I’m glad I didn’t. I guess the point of my writing today is to try to impress upon you how important being in the moment is. Usually I try to offer some kind of encouragement and advice about how to handle your own and your family’s emotions amid the turmoil of FTD. I don’t think I can do that today. Because some experiences and emotions are so personal and unique, that to tell you how to handle them would almost be an insult. You are you, I am me. I just told you that I am not the me I was. I am irrevocably changed by experience. You will be too. The transformation has already started. Your metamorphosis into the post-FTD man or woman is already under way. You can’t stop it,  just like you can’t stop the FTD. All you can do is go with it. Watch in wonder as it appears. I wish I could liken it to a beautiful butterfly emerging from a chrysalis. But I can’t. I can’t promise you will be a more beautiful you –outside or inside. But you will be different, that I do know. Your life will emerge as something completely new. Post-FTD, without the stresses and strains of the practicalities of caring for someone with a debilitating, terminal condition, you will probably be baffled as to who and what you are.

I wish I had an answer. I may never know the answer. I don’t even know if there is an answer.  I am full of admiration for those of you who are still doing what I did every day. My heart breaks for you because I know what is to come. Now I know. I didn’t know in 1976, thank goodness. I was able to have a full and happy life and marriage. We had many champagne moments. I am so grateful for that. My life is still full. It’s full of sons and grandchildren and other family members. I have grown closer to all of them as a result of what we went through. Going back to an earlier comment ” Are you dating yet?”, all I can say is –why would I want to expose anyone else to what our family has been through? How could they possibly understand our pain. They weren’t there, they don’t know. It would not be fair to anyone, an outsider if you will,  to expect them to understand.

I make no apology for the somber tone in my post today. It’s a sad day for me. Tomorrow is a new day and I will bounce right back and be the new me again.  These days are a reminder of what once was. Of what I had, what we had and did. So it’s all good. I have wonderful memories. Even some of my FTD memories are good or at least funny. But there are many more non-FTD memories. From 1976 until 2012, it was a terrific ride. From 2012 until today, I have been able to reflect and rebuild.  FTD could not take that away from me. I may have been down, but never out. My husband loved the feisty me. She’s still around as everyone around me will attest. Bastard FTD. Ha! Couldn’t take that away.

My husband loved champagne. We drank it at every opportunity. I will be having some later.

Happy anniversary to us.

love champagne

Frontotemporal Visitation – yes or no?

Prison barsTo visit or not to visit, that is the question?

You hate to see them that way, but you want to see them.
You feel guilty if you don’t go, saddened if you do.

Keeping a relationship going with your loved one with FTD is difficult at the best of times. Once they are institutionalised, you are faced with a whole new set of decisions.

Just making the decision to ‘place’ them somewhere other than your home is one of the most difficult things you will ever do.

If, like I did, you try to make their new place as ‘homely’ as possible, you may be very upset when they don’t even notice the favorite pictures on the wall. The photographs of your grandchildren. Or a memorable trip you took together.
They won’t notice the cashmere sweater you got them for Christmas.
Hell, they probably won’t even notice if you don’t visit.
That hurts.
It hurts that your efforts to overcome your grief, sadness and anger are often for nothing. It takes a superhuman effort to ‘keep it going”.

Superhuman effort to keep your needs under wraps.

We only try to ‘carry on’ for our own benefit. It’s not selfish, it’s self-protection. We use the practicalities of resolving issues to paper over the cracks of the situation.

It’s out of control. Often you feel out of control. You desperately hold on to everything you hold dear. Your routines and schedules. Your little habits. The things you did together.

The visit comes around and you fit it in to your routine. You have a new routine every week it seems. Your FTD life, albeit changed now that you deal with it outside your house, continues.

If you still work, you focus on that during the times when you’re not FTD’ing. It’s a welcome distraction. Anything so you don’t have to think about what you did. What’s happening in your life.

People marvel at your ability to cope. But it’s all a sham. Another superhuman effort to disguise the fact that inside you are breaking up.

The one person who would help you through such difficult times is the very cause of your anguish. But they can’t help you.

It’s like watching them drowning in sight of the shore, but your feet are in encased in concrete and you cannot run into the ocean to save them. The ocean of FTD is unrelenting. Its tide washes over everything, scooping up your life until it becomes flotsam and jetsam scattered over the sand of time.

Visiting can either be a relief – you are reassured that they are being taken care of physically so that you can share emotions (which they no longer have).Or it can be a trial of frustration and sadness because they no longer acknowledge your caring and love. Sometimes it’s both.

So it’s tempting at times not to go. Just not to go. The physical pain caused by the emotional anguish can just be too much. But then, the guilt comes. Guilt is a powerful soldier of the FTD General. It will follow you around, sit on your shoulder, peck at your head. Guilt is good at steering you back to what you don’t want to do.

But you do want to do it.

But then you don’t.

Yes, you do – oh wait, it hurts.

Visiting is such a dichotomy. You’re damned if you do and you’re damned if you don’t. I can’t tell you not to feel guilty if you don’t want to go. Sometimes you just feel like staying home and being ‘normal’. Relaxing and not doing anything in particular. But there goes that guilt again. “You shouldn’t be doing that! Not when your loved one is suffering so.”

The suffering is yours too. They don’t know they’re suffering. In a place with good care, their needs are being met. They don’t really have ‘wants’ anymore, just needs. And that is one of the things that is so hard to understand.  They don’t ‘want’ anything. They don’t ‘have’ anything. They don’t want their own stuff. They don’t ‘want’ their other life. They don’t ‘want’ you.

They don’t ‘miss’ anything.

And even though you know they are not doing that by choice, it still hurts.

Visits are overrated, I think.driftwood

Courage in the face of FTD. You can do it!

Courage

Oh Ernie! Ain’t that the truth! Such insight.

People will describe what you do as “Courage”.

You may not think what you do is courageous. But it is. You may think that anyone who loves someone would do what you do. But they wouldn’t.

You may think that if you love someone you do whatever it takes. If you’re married, you vowed to love and care for them “in sickness and in health, ’til death us do part” didn’t you?.

Death will part us all eventually of course. How, when and why remain a mystery. If it’s from FTD, you will have your love, your loyalty and your courage severely challenged.

The words ‘challenge’ and ‘courage’ are complimentary. The people I meet who are working through FTD face every challenge with courage they never thought possible. You will be amazed how it appears. You have no idea where it comes from.

People will compliment you upon it. Admire you even. Of course you’d rather not be admired for it under the circumstances. But honestly, it is nice to receive credit where it’s due.

And it is due. You should take it.

The courage required of you to traverse the rocky path of FTD would match anything that an Everest climber or a lone Atlantic sailor has. You will need every ounce of your being to watch the slow descent into the unknowing abyss. The abyss into which your loved one slips. Like a person falling off a cliff or a high building, you will first grasp their wrist, their palm, their fingertips and finally be forced to let go.

The ‘letting go’ isn’t death. It is allowing yourself the courage to face the truth. The truth that FTD, the silent thief, is doing its dirty work against you. Accepting this requires the courage that you didn’t or don’t think you have. But you do.

You really do. Sometime in the future you will realize that what you did was almost superhuman. You will realize that courage isn’t about physical strength or getting through a crisis.

It’s about realizing and accepting that which you cannot change. (As the saying goes)

  • You are no longer ‘a couple’.
  • You have to think of yourself as a single person. BUT you’re not. You are a widow or widower- in -waiting.
  • You have to make decisions that you don’t want to make.
  • You will need help, which you may not have ever needed or wanted before.
  • You will feel exhausted.
  • You will feel overwhelmed. 

Not all of them, all the time of course. But all of them at various points in the journey. It’s ok.

Courage is what will see you through. The courage derived from your love, your loyalty, your fidelity to your love. You have it. It’s in there. Just search round in the myriad of emotions that are going on with you in the moment. Draw on it like water to a man in the desert. It will bring confidence, relief and strength.

Courage is not the same as strength.Unpleasant awakening

Strength is what you will build throughout your journey. Courage is you. Courage is what you possess inside. It is there to help you through this. It is there to help you build the strength. If you were lucky enough to have had a strong, loving relationship through the years as I was, your partner will have helped you build this courage. He or she will have built upon your innate courage and turned it into something that will help you to help them.

Power.

The power to weather the storm. The power to make your love the guiding force.

The power to show your courage proudly for all to see. Like a banner.

One that you can fly proudly as a demonstration of your courage.

Flag on the moon

FTD – New Year, New Phase? 5 tips for moving forward.

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The ever-changing landscape of what FTD looks like today in your house. It is temporary. It changes day-to-day, sometimes minute-to-minute.

The impending New Year brings uncertainty, other than that phases will come and go. Each one is completely different to the last. Sometimes, behaviors from one phase carry over to the next, sometimes disappear completely.

Ocean tide2

The ebb and flow of FTD is like the ocean. The tide brings in all kinds of flotsam and jetsam.

Then takes some of it away again. Permanently.

To be prepared for such drastic change, you need to protect yourself and family from the feelings of helplessness and frustration.

1. Accept.  Accept that the changes are inevitable. Accept that they may be here today, gone tomorrow. Accept that there is nothing you can do to alter the course of the disease, only your attitude towards it. Acceptance of “It is what it is” will really help you to handle inappropriate and strange behaviors.

2. Don’t argue. Arguing with a person with absolutely no logic or reasoning is fruitless and frustrating. Going back to (1) above, you have to accept that your loved one has no insight or sense of reason anymore. Sometimes however, I have to admit that arguing feels good, even though you know it’s useless. It helps get out your frustration. Your loved one will look at you as if you have two heads because to them, you are the unreasonable one.

3. Be kind to yourself. When it’s all over, no-one ever says “I wish I’d waited longer to get help”. Or “I wish I had not taken a respite break when I had the chance”. If it is at all possible for you to get away for a few days, do it. Or even just a pedicure, dinner out with friends or day at the beach. You can’t go back and redo it.  In my experience, being afraid to do something of which you think your loved one would not approve or want you to do (leave them for a day) is purely one-sided. a) They won’t even know what it is that you’re doing and b) you don’t actually have to tell them. See item 4) below.

4. Therapeutic fibbing. This tactic may be the single most valuable tool in your arsenal throughout the course of FTD. You have to remember that your loved one, after a certain point, has no concept of time, place (other than your familiar home maybe) or situation. Sometime, they will just be argumentative because that is the phase of the disease they are in. I once asked a member of my support group why she was so concerned about telling her husband that she was going away for the weekend with a friend. She replied that he would not like it. I asked her “What will he do?”.  She replied that he would be grumpy and disapproving”. I said “So what?”. She was leaving him with a carer with whom he was very familiar. So she knew he would be safe and well-cared for. She told him she was going to see a sick friend, went on the trip and he was just fine. The carer said that he never even asked about her. When she returned he just said “Hi” and carried on with what he was doing. Like she had never left.

5. The voice of reason. You will probably give your loved one way too much credit for understanding what is going on. Because that is how it has always been. Each being deferential and respectful of the other’s needs. Other than keeping them safe, comfortable and loved, there is little else you can do. You cannot defer or appeal to their prior intellectual status. Not that you should treat them like an idiot of course, but don’t give them credit for making good choices or decisions. They can’t. Not anymore. You are now in the parental role of making all their decisions for them. That’s not to say you should dismiss what they say (or try to) but merely agree and then do whatever you were going to do anyway. Agreeing is one of the tools.

This year will certainly bring new behaviors.

New choices. New fears. New decisions.

For some of you, it will bring new status. Perhaps this is your loved one’s last year. Perhaps 2014 will bring the last stage.

I’m not trying to be morbid or scary. Just realistic.

You will know if it’s the last year. You will know what you need to do.

You won’t need a list of tips.

You will need all the love you can muster. But you will know that you have done everything you can do to ease the passage to the next phase.

Whatever that is.

Inner_Peace_by_mcbadshoes

I wish you inner peace, love and serenity for 2014.

FTD? Next question please!

HeadQuestionMark

I have written on many topics in the last few months. Some poignant, some funny, some expressing anger.

So now, I would like to know – what kind of things would you like to read about regarding my experience with FTD?

Over the five years that my husband and I spent tackling this heinous disease, we went through many trials and tribulations. We experienced what it is like to move through a broken healthcare system. We saw love and compassion from complete strangers, we saw greed and indifference from others.Qestion mark purple

Obviously, my experience with Frontotemporal Degeneration was singular and unique. Yours will most certainly not be exactly the same. But what I -we- saw, did and had happen to us can hopefully paint a picture for you. You could perhaps, use it to help you decide on which path to take through this disease.

Some things that come to mind are practical issues-food, incontinence and sleeping. Or perhaps end-of-life-issues, about which I have some quite strong views and suggestions. Personally, the biggest challenges for me were not of a practical nature, more the emotional stranglings that take place when your spouse is slowly being dragged from you.

Anyway, please feel free to suggest whatever is on your mind. Have a wonderful weekend –

Heart eye 2treasure every minute……..

Mens Sana in Corpore Sano (no – nothing to do with Saunas)

Image

“Healthy Mind, Healthy Body”. Sadly for someone with FTD, this is almost never true. The disease often strikes people who are generally otherwise healthy, by chipping away at their frontal lobe. This insidious waste begins with a few word-finding issues – a ‘slip of the tongue’ for you and me; a signal that something is wrong for the affected. Overall fitness and health is relatively unaffected.

Throughout the five year span of his illness, my husband remained strong, fit and active. Walking and getting up by himself – even up until about two weeks before he died in fact. He never had any physical ill health until he could no longer eat or drink well. Clearly one cannot last for long if you can’t do that. Here’s a few things to remember:

  1. Keeping your body healthy may not always mean that your mind will be so.
  2. If you and your partner are unfortunate enough to have to endure this journey together, remember that forewarned is forearmed. There are so many things out of your control at this point that just going with the flow is the easiest option for everyone.
  3. If it’s not hurting anyone, leave it alone. Choose your battles.
  4. People with FTD often retain intellect for a long time into their disease. So coupled with physical strength and health, this can make living with and caring for them very difficult indeed.
  5. As the disease progresses, cognitive skills – insight and logic for example, decline at a fairly rapid rate. But this is very insidious and often barely noticeable for weeks at a time.
  6. What is noticeable is the strength and will that goes along with the irrationality. It’s sort of like having a six-year old “Incredible Hulk”. He can push things (and people) around, throw things and resist with great strength.
  7. Retain a sense of humor at all times.
  8. You cannot reason or argue that they may want to do it another way. You have to concede, wait and go back later. Re-approach and use the fact that they have forgotten to your advantage.
  9. Unfortunately this may not work in Safeway when he is trying to take someone else’s cart, or chastising them for wearing their pajamas and slippers to the store. Or laughing out loud and pointing at someone’s haircut/shoes/outfit.
  10. If you’re five foot nothing and attempting to control this behavior in a fit, strong man of fifty-four – Good Luck! Learn some new techniques (see below).

Number 7 is probably the single most important thing.

There is lots of information and support available at www.theaftd.org

Many support groups are springing up as FTD becomes more frequently diagnosed. Even if you’re not a support group type of person (I wasn’t), you will meet people there who are going through very similar things to you. They are comfortable discussing incontinence, public urination and swearing. You will not be telling them anything they haven’t heard before. New information is discovered every day. Sharing yours helps other people.

Having an FTD diagnosis will make you rethink your entire life, philosophy and values. You will find the mental strength to combat the physical stressors. Hang in there.

FTD? PPA? CBCG? WTF?

Image

Fronto-Temporal Degeneration  – now there’s a mouthful of medical jargon.

To the uninitiated, this term has no meaning at all. Until it is explained to you that it is a type of dementia. Then it gets scary. Everyone’s heard of Alzheimer’s disease right?. Funny how neither of these terms mention the word dementia – ‘degeneration’, ‘disease’. Used to be called ‘senility’ or “Auntie Joan’s gone a bit funny”

When you hear these words during a doctor’s appointment, you may not understand what they mean – literally or clinically. It will take some time, maybe even never, for you to understand.

You may also hear the words “Behavioral Variant” or “Pick’s Disease”, or “Primary Progressive Aphasia”. This will seem like Swahili to you if you are an English-speaking person of average intelligence. If you have less than an 8th-grade education, it may as well be. I have been a nurse for over twenty years and I have to tell you, these terms were all new to me six years ago.

So, based on personal experience, here are the top three things that you should ask during an appointment with your neurologist.

1. Can you explain that in Layman’s terms please? 

Neurologists are highly educated, specialized doctors whose only point of reference with real people is that they get up in the morning and put their pants on one leg at a time. They have spent many years studying their craft and usually continue to keep up to date with the latest research. However, this ‘braniac’ state is not normally accompanied by a strong sense of touchy-feelyness. They will be short (often in stature too) and to the point. They will spew ‘differential diagnoses’ at you. Differential Diagnosis means that they are thinking you have one of two things but they’re not sure which. You need to be clear about what he/she is ruling out and what can be ruled in. In words you can understand.

2.  What should I do next?

     Once you have your ‘Differential Diagnosis”, what do you do? Do you go home and cry even though you don’t know why? Do you throw yourself under a train? Do you go home and distribute all your worldly goods to your nearest and dearest? Make your doctor be specific about the plan – it should be a discussion, a plan – not him/her telling you what to do. The doctor’s job is to offer options and then work with you to help decide on the one that’s right for you. If you can’t help with the plan, it is not being explained to you in words you can understand (see point 1.). Ask some more.

3.  If I were your husband/wife/mother/father, what would you do?

     You’re not asking them to tell you what to do, but you can bet your bottom dollar that they would have a plan if this was happening to them. They would be seeking the very best care; the experts in any kind of dementia; the researchers, the innovators.

Most of what goes on in the human brain is largely unknown to us. Neurologists like most physicians learn their craft based on historical data and ongoing research. Because neurology is a specialty, they have studied for several years beyond basic medicine, residency and practice. Many of them are older, – Boomers.When they were in school, ‘bedside manner’ and compassion were not taught as part of the curriculum. They will tell you the facts and then let your imagination run wild on the way home.

Don’t get me wrong. I am not saying that neurologists are not good doctors. But because their world is of necessity, erudite and academic, they often don’t understand that when you are faced with a terminal diagnosis, their work cannot end there. Even if they can’t provide what you need psychologically and emotionally, it would be good if they could at least begin the process of pointing you in the right direction.

Ask, ask, ask. Don’t leave the office until you have a grasp of what is being said to you. Ask the doctor to write it down – draw a picture if it helps. You will be stunned. Just be sure that you understand what you have been told. Dementia, degeneration, disease. They all mean broadly the same thing – something is broken. If it can’t be fixed, you need to know that.