Nominated for The Liebster Award – I’m flattered!

liebster2_thumb-copyThanks to Wendy at http://yellowmumblog.wordpress.com for her faith in my work.

Although I don’t really think of it as work. I get an idea in my head and somehow it makes its way onto the page. Sometimes I’m not even sure how it happens. The words come tumbling out and arrange and rearrange themselves into some semblance of order.

There have been so many words over the last two years I have finally pulled them all together into a book – “The Dance” – which tells of our journey through Frontotemporal Dementia. The book will hopefully be published in April – watch this space for more details!

Here are the rules for the Liebster Award  :

1. Each nominee must link back the person who nominated them.
2. Answer the 10 questions which are given to you by the nominator.
3. Nominate 10 other bloggers for this award who have less than 200 followers.
4. Create 10 questions for your nominees to answer.
5. Let the nominees know that they have been nominated by going to their blog and notifying them.

So here are the questions I have to answer in response to my nomination for the Liebster Award:

1) If you had to go and live on a desert Island, what 3 things would you take with you? 

If life-sustaining things like water and food are assumed then here are my three things……

i) My laptop! But then of course, to make it work – well, keep it charged anyway, so I would also need a generator. Does that count as number 2)? I’m taking a liberty and saying no!

Having a laptop would give me all the things I love – music, contact with my family, images and the ability to communicate.

ii) A comfy bed – can’t beat a good night’s sleep. Anything is possible with a few good zzzz’s under your belt!

iii) Bug spray – hate being bitten by those buggers.

2) What makes you weep with laughter?

Actually not too much anymore. I smile and giggle, but have not laughed till I cried really for quite a while. The last time I remember was before my husband died. A very childish incident at a Planetarium with my sister-in-law while discussing Uranus……you can use your imagination to figure out how immature we were being!

3) Would you describe yourself as introverted or extroverted?

Introverted. Which will surprise many people as I have a lot of bravado which may give the illusion of an extrovert. In fact, like an iceberg, there is much more that is not apparent above the surface. I think and believe things by which some of my friends and coworkers would be quite shocked I think.

4) Do you like mayonnaise? (I have to ask this, as I can’t stand the stuff)

Yes, but not thickly spread – just a thin layer on a sandwich, or as a flavored side element of something to dip in it.
5) If this was you last week on earth, how would you spend it?

With my wonderful family, at the beach.
6) Do you prefer the city or countryside?

The city for the vibe – people, noise, traffic, bars, the theater, music, good food. The country for peace and quiet, clear air, the smell of cut grass, relaxing in a garden listening to the birds and breezes in the trees. I want it all!

7) Do you have any phobias?

Hmmm no, not really phobias. There are things I choose not to experience, but would not completely freak out if I had to. Being in the pitch black dark is not my choice, nor would be eating anything disgusting like they do on “Fear Factor”.
8) What’s your favourite hobby?

Right now, Zumba! It’s my favorite form of exercise – it’s like a party. The music is intoxicating and it’s a great workout that doesn’t feel like one.
9) Can you roll your tongue?     Yes.

10) What single quality do you most appreciate in people?

Sincerity. I don’t care if you don’t like me – just don’t pretend you do. Being polite and professional is one thing, but ingenuity stands out a mile to me.

So there you have it – the answers to the  questions.

Here are the blogs I nominate:

http://terry1954.wordpress.com

http://dawn7238.wordpress.com

http://myhusbandhasftd.wordpress.com

http://fuckdementiatodeath.wordpress.com

http://alzheimershopeandhelp.wordpress.com

http://wp.me/3cTu0

http://lynnbowerdementia.wordpress.com

There are supposed to be 10 but as one of the criteria is that the blog has to have fewer than 200 followers, it was difficult.  some blogs don’t show how many followers they have. I actually don’t follow that many blogs.

To be honest, I find it hard to believe that some of the blogs I see have thousands of ‘Followers’. I find it fascinating (and sometimes a little dull) – the things people write about. Honestly, some of it is utter drivel. Maybe I’m just not seeing it, but writing about how depressed you are because your boyfriend packed you in is just not interesting to me. Perhaps its a generational thing, but it seems self-indulgent to expect sympathy from a group of complete strangers who don’t give a s**t about you or your life. To each his own I guess. Of course, I am not including any of my nominees in that statement, some of them are going through truly horrible times in their lives and I admire them immensely.

What do some of these people do all day? Don’t they have jobs? I am sometimes a little envious that I don’t get to sit home all day and just write. That would be heaven. Anyway, for now I will have to make do with writing in the evenings when I get home from work.

My nominations are meant sincerely and I genuinely feel something for each of the people whose work I read. They make me laugh, cry and think. They bring me memories – some good, some painful. But they make me feel something. And isn’t that why we all write? To demonstrate emotion?

So for my nominees – here are your ten questions:

1) Have you ever lived in another country? Where?

2) Do you meditate or do something else that is spiritual?

3) How do you like your eggs?

4) Which historical character (real or fictional) would you   like to meet and why?

5) What would you say if you were the first person to greet  visitor from another planet?

6) Favorite sport?

7) Do you use profanity? If not, why not?

8) How do you celebrate your birthday?

9) Why do you write?

10) How would you like to spend your days? (Choice not necessity)

Have fun. I am looking forward to reading your replies.

Similarity to Caregiver Can Indicate Whether a Patient has FTD or Alzheimer’s

very interesting…….

Info & Resources for Caregivers from Dr. Chow

A recently published paper called, Observation of Social Behavior in Frontotemporal Dementia by UCLA’s Dr. Mario Mendez et al. reports the following:

Background: The most characteristic manifestations of behavioral variant frontotemporal dementia (bvFTD) are abnormalities in social behavior. However, distinguishing bvFTD based on social behavior can be difficult in structured clinical settings.

Methods: Using a Social Observation Inventory, 10 patients with bvFTD and 10 patients with Alzheimer’s disease (AD) were compared to their caregiver interlocutors on 1-hour mealtime, in-home videotaped segments.

Results: Compared to caregivers and patients with AD, patients with bvFTD were significantly disturbed in social behavior. In contrast, patients with AD were indistinguishable from their caregivers. The lack of ‘‘you’’ comments and decreased tact and manners distinguished 92.6% of the patients with bvFTD from patients with AD and caregivers. The Social Observation Inventory scores correlated with scores on frontal-executive tests and socioemotional scales.

Conclusions: The systematic observation of…

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Decisions, frontotemporal decisions……..


DNR2

One of the best things you can do when you first see the symptoms of any cognitive change (or preferably before that)  is to sit down with your loved one and have them write exactly what their wishes are. One piece of paper can save you from a world of hurt down the line.

Your love will be tested enough.

Have the dreaded discussion.  If you don’t, even if you know what they would want, when it gets to the time when they can no longer make those decisions for themselves, there are a million (well a lot anyway) legal and moral hoops to jump through. The hoops are mostly made of ‘red tape’. But not having the right paperwork will seriously inhibit your ability to take care of your loved one’s best interests.

Some of the written information may not be official paperwork. It may be just a handwritten summary of what they would like to happen. But at least you will know. At least you will be armed with their choices, their decisions. And not be forced into making them yourself.

Especially at a time when you feel least able to make them.

Having been a nurse for many years before the onset of my husband’s FTD did not help at all let me tell you. Having medical knowledge just makes you more angry at the morons (I’m sorry, I did think that sometimes) who purport to care for your loved one. Obviously they’re not all morons. Quite the contrary. The people who took care of my husband for the last four months of his life did a far better job than I ever could. They were wonderful. As the old saying goes “You have to kiss a few frogs before you get your prince”

Same principle, applied to caregivers. Unfortunately you don’t always have that much time to kiss the frogs. Or appease the morons. Even being in ‘the system’ did not help me. The minefield of decisions was just as terrifying for me. Even with my inside knowledge.

Often before you find the great place for your loved one to end his/her days, you will endure 101 requests for those vital pieces of paper. For example, before they can be admitted to any kind of facility for psychiatric evaluation you will need at least 3 copies of each. Pretty much every person you speak with will want to see them. Especially the Medical Power of Attorney. I thought it might be helpful to have a glossary of the various terms and paperwork that you will need to give you the power you need (no pun intended).

So here it is…….

Last Will and Testament.

I’m sure that you all know what this means, but I just want to make sure that you understand that this is most definitely NOT the same thing as a Living Will or Advance Directive. The Will is generally about documenting wishes in regard to belongings and property.

Advance Directives  are written instructions that document a person’s wishes in the event that they are unable to make decisions for themselves.

Advance Directives include:

Advance Directive umbrellaPower of Attorney (POA) – this is the document that your loved one signs to say that, in the event of them being incapable of making their own decisions about their life, a designated person (usually the spouse or children or a close friend) has the authority to do so. The Power can be “Durable” –  meaning it  gives the designated family member of friend the power to advocate for the patient, or limited to a specific aspect such as Financial or Healthcare/Medical. In the United States, there may be variances according to State Law. For example, in Arizona, Healthcare (Medical) Power of Attorney must include Mental Health on a separate document. Good to know in relation to dementia.

Even with a signed Mental Health Power of Attorney, I still had to have my husband’s physician sign paperwork to say that he was not competent to make his own decisions before an in-patient psychiatric facility would admit him.

The Durable Power of Attorney gives the authority to make decisions, but does not specify what those decisions should be. Holding Power of Attorney may not give specific rights to a spouse or child if it does not include a Living Will or other Advance Directive. The Medical Power of Attorney and Financial Power of Attorney can be different people. Even if you’re not hugely rich, you need a Will and some Advance Directives, just so everyone knows what to do.

P.O.L.S.T (Physician Orders for Life Sustaining Treatment)

The POLST form is a set of medical orders, similar to a DNR order.  POLST is not an advance directive.  POLST does not substitute for naming a health care agent or durable power of attorney for health care. It results from considered, shared discussions with the doctor, family, spouse, other caregivers, and sometimes the patient to ensure that their medical wishes are clear to all concerned. It takes into account the personal desires of the patient, including religious values, beliefs and goals for their remaining life. This shared decision-making ensures clear and unambiguous care.

POLST  is for seriously ill or frail patients for whom their physicians would not be surprised if they died in the next year. POLST is not for everyone, it is not a Living Will per se. What the POLST does is give direction – doctor’s orders,  to health care providers – EMT’s, paramedics, ER doctors and nurses, in the event that your loved one ends up in an ambulance or the emergency room.

Click here to find forms for your state

Guardianship

If there is no POA – especially for Mental Health, in place at the time a person becomes declared incompetent, you may need to apply to the court to gain the Power of Attorney you need to access your loved one’s funds, healthcare records and make decisions that they are now unable to make. The guardianship process  can be long and drawn out and cost quite a lot. You will need to use a lawyer to help you through the process. Again, there are differences from state to state. When completed, you effectively become the guardian and advocate of your loved one’s interests.

The court will decide if you are fit to do so. So isn’t it better for your loved one to decide first? You can’t assume that it will automatically be conferred on to the spouse or next of kin. If there is no family available, the court will appoint their own Guardian to advocate for the person.

Living Will

Living WillThis is an Advance Directive that specifies a person’s wishes in the event of a catastrophe that causes that person to be unable to make healthcare decisions. This includes a traumatic event – heart attack, stroke, or in our case, a debilitating illness affecting the mind. Even people who are not sick should have one of these. There is less ambiguity when it comes to the various family members agreeing (or often, disagreeing) on for example, a feeding tube, CPR or other life-saving procedures. If everyone knows what you want, there can be no ambiguity. In extreme cases, if it comes down to “pulling the plug” (sorry, that’s a horrible phrase, but one recognized by everyone) – if it is written and signed by the unconscious or incompetent person, then there should be no arguing among the family about whether it should be done or not.

As you move forward into FTD, it will become very clear that your loved one absolutely cannot make financial or medical decisions (or even what they’re eating for lunch today) by themselves. You will have some tough choices to make. You will have to stand your ground and advocate for them. It will be so much easier if they have done it for you.

DNR (Do Not Resuscitate)DNR

The Living Will should specify exactly what, if any, life-saving measures be taken in the events described above. DNR means that the person will be treated only to ensure a comfortable, natural death, without heroic intervention to prolong it.

Life saving/preserving measures include:

Resuscitation (CPR)Resuscitation

This is when the medical staff will attempt to restart  the heart when it has stopped beating (cardiac death). It includes chest compressions (someone rapidly pushing down on the heart firmly through the chest wall), ‘bagging’ – air being pushed into the lungs manually via a mask over the face and probable defibrillation – an electric shock delivered by a device to stimulate the heart back into action. It’s not pretty. And the outcome is not guaranteed.

Even in a hospital setting, with a witnessed event,  the chances of surviving are quite small. If there are more than about three minutes between the cardiac arrest and the start of resuscitation, there is a greater chance of brain death due to lack of oxygen.

Mechanical ventilation

  • A machine that takes over your breathing if you’re unable to do so. This involves the insertion of a plastic tube through the mouth down into the lungs (intubation) You may hear this called an “ET tube”. This is the machine that is referred to when you hear TV reporters and newspapers talk about “Pulling the plug” The ventilator pushes air into the lungs at a prescribed rate and pressure. It is only used when the person is unable to breathe for themselves. While intubated, the person is usually sedated as they are unable to speak and they are often restrained – tied at the wrists –  to counteract the natural instinct to pull out the tube. Some people don’t realize that it is the machine keeping the person alive and not the person themselves. For example, there is a case in the news right now about a thirteen-year old girl who is brain dead, but because her heart is beating, her parents are convinced she is alive. She has no brain activity to tell her heart to beat. The machine is keeping her “alive”.

Nutritional and hydration assistance.

  • Fluids and or food can be infused intravenously or via a tube inserted into the stomach. The tube can be inserted via the nose (NG tube) or through the wall of the abdomen (PEG tube). In FTD, this may be suggested to you when your loved one’s swallowing becomes more difficult and eventually goes away altogether. As the swallow reflex disappears, there is a chance of aspiration – the food or fluid gets inhaled into the lungs instead of being swallowed down the esophagus into the stomach. Obviously, this is not good. The resulting ‘foreign body’ in the lungs can cause an infection – pneumonia. Then you will have another decision to make. Antibiotics or not?

Dialysis

  • This is a process that removes waste from the blood and manages fluid levels if the kidneys no longer function. If your loved one can’t remember or doesn’t want to drink or eat, they may become dehydrated and have some kidney failure. Dialysis involves the permanent insertion of a two-way intravenous catheter. One side for removing the blood and one for putting the clean blood back in. Dialysis takes about 3-4 hours, 3 times a week, attached to the machine that pulls out and pushes back the blood.

I’m not trying to scare anyone, but clearly, all of these procedures and processes require a great deal of forethought. Going through any of them for a person with FTD would be quite horrifying in my mind.

If people ever asked me about my husband’s DNR status, I would always say – “If we resuscitated him what would we be saving him for? More of the same? Worse?

If I’m very honest, I would have to say that my husband would definitely have preferred having a heart attack and being dead to suffering as he did for five years and then being dead anyway.

One other thing I would like to tell you that many people don’t know is to check your loved one’s life insurance policy. I found out that I had been paying premiums on my husband’s policy for two years and there was a premium waiver clause in the case of terminal illness. I only found out because I was looking for another clause – an accelerated death benefit.

The insurance company did refund the premiums I had paid since the time he was diagnosed.  I just had to send them a letter from his neurologist with the diagnosis and prognosis. Interesting that they had denied increasing his death benefit about a year before, due to his diagnosis but never told me about the premium waiver!

The accelerated death benefit can pay you part or the entire death benefit for documented terminal illness ahead of time. Good to know. Worth checking into.

There is also something called a “viatical settlement” in which you can sell part of the anticipated death benefit of the life policy to another company in return for cash, which you may well need now rather than in the future, to help with medical or caring costs.

You may also want to consider organ donation if your loved one is physically fit and healthy. Or think about donating the brain for research which could help to find out more about the bastard disease and find treatment and cure more quickly.

So there it is. Some things to think about. Rather a lot really.  It can seem quite overwhelming. Yu should also be sure to have your own set of Advance Directives, in the event that something happens to you before your loved one.

But do it sooner rather than later. You need to protect yourself and your loved one. No-one likes to think about it . Some people think it’s morbid.

It’s not morbid. It’s loving, caring and sensible.

Love drop

FTD – For 10 points, your first question is……..

Question mark purple

At the end of 2013, I asked if there were specific questions to which you would like me to respond. The responses and subsequent questions and comments were interesting and varied.

Most people seem to want to know what it was like for me. How did I cope? What little things made a difference to me? What gave me strength?

I have also been asked – How long was my husband ill for? How did I know when to move him into residential care? What was that like for me?

Other people seem worried by what moving forward to the next stage will mean. For them, for their family, for their loved one.

There are a million questions it seems. Obviously I don’t have all the answers. No-one does, nor can they. The uniqueness of every person means that we cannot generalize. The general rarity of FTD in relation to other dementias like Alzheimer’s means that the answer for one person may not be right for another. It seems that no two people or their caregivers have exactly the same experience.

So I feel that all I can do, post by post, is to take each of the questions and give a summary of how I dealt with that particular problem, or how someone I know dealt with it. Hopefully, you will find ideas to create a solution to your problem of the day, week or moment.

Number One 10The first topic – what things made a difference for me? Made it easier to cope?

Well, mainly my family and friends. Without them I would have gone completely insane. Their unconditional love and ability to know when I just needed someone on the other end of the phone was uncanny. To just listen to my crying at the other end of the phone. Just to hold my hand without speaking. To go and look at Care Homes for my husband, even when they didn’t want to.

I consider myself lucky in the extreme to have them in my life. My coworkers were amazing. Every day. every week. Every month. Listening, covering for me. listening some more. Shoulders to cry on, hands to hold. Hugs to give.

For three years, I had to put my usual fierce independence aside and take the help that I had always eschewed in the past. I could not do it alone. Don’t ever think that you can. Don’t even try.

I know people who had to do much of it alone. They were not as lucky as me. They had no family to speak of. One woman would tell us at the Support Group that her in-laws would not believe what was happening to their son. They refused to accept his illness. They accused her of controlling his life and keeping him from them. But they never offered to have him stay with them or come over and stay at their house while she went out for a day. They would never accept that he was no longer capable of making his own decisions. Not until the end stages.

Once he could no longer walk or talk or feed himself independently. Once they saw that his wife had to call the local Fire Station to help get him up if he fell down. Once they saw the soiled bed she slept in next to him every night. Once he died in his own home after she had taken total care of him for three years. Sacrificing her life and her work for him. Without them.

Without them. With the help of friends and respite caregivers. Without his family’s help.

Everyone deals with things in their own way of course, but I doubt she will ever forgive them for being so cruel.

So rally your friends & family. Tell them everything. Pull no punches. It is what it is. It’s not your fault. It’s not your loved one’s fault. There will be unpleasant, painful, exhausting times ahead. Rally the troops and figure out a plan. If it’s early days, ask your loved one what they want. How they want to be cared for. By whom. And what they want for you.

Don’t leave it too late for those conversations. With your FTD’er and your family. Don’t put it off. It’s important.

I was asked what made a difference to me during the time I cared for my husband. It was people.

All the people that make up the circle of my life. They were with me then and they are with me now.  They are not just people. They are MY people. I love them.

They know who they are. They love me. When I have red eyes, when I’m sobbing, when I’m complaining, when I was just damn exhausted and could not go on. They helped me go on. They made it possible for me to get up every morning and do it all again.

Thank you.

All of you. I will never forget what you did for me.heart and hands

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 – Can You Feel It?

FTD – Can You Feel It?

indiana04

Love.  It’s all You Need, according to Lennon and McCartney.

It’s All Around, according to the Troggs and Wet Wet Wet.

I have spoken of it many times on these pages. I speak of it frequently in my life.  It’s in my head all the time. There’s no getting away from it.

Even in the deepest throes of FTD, somehow it survives – thrives even.

I happened upon this interesting article about a letter written by John Steinbeck to his son, away at boarding school. The son had written to his father about his deep love for a girl in his class. Asking advice about how he should handle his feelings. His father responded:

“There are several kinds of love. One is a selfish, mean, grasping, egotistical thing which uses love for self-importance. This is the ugly and crippling kind. The other is an outpouring of everything good in you — of kindness and consideration and respect — not only the social respect of manners but the greater respect which is recognition of another person as unique and valuable. The first kind can make you sick and small and weak but the second can release in you strength, and courage and goodness and even wisdom you didn’t know you had.

Glory in it for one thing and be very glad and grateful for it.

The object of love is the best and most beautiful. Try to live up to it.It sometimes happens that what you feel is not returned for one reason or another — but that does not make your feeling less valuable and good. “

– John Steinbeck , 1958

John certainly had a way with words didn’t he?

I especially like the parts about

“an outpouring of everything good in you”

and

“ (it) can release in you strength, courage and goodness and wisdom you didn’t even know you had”.

He could have written it to the caregiver of someone with FTD.

For myself, the love I had for my husband was probably the only thing that got me through those often very difficult times. Once you relinquish the fight and accept the inevitable, your love will give you the strength to handle tricky, embarrassing and downright scary situations.

If, for some reason you have lost the love you once had for them, take courage and strength from the thought that I and many other nurses like me, are able to offer compassion, caring and assistance to those that we don’t “love” in the same way as we do our families. But we love them all the same.

We love the privilege of caring for another human being. We love sharing some of their most private moments. We find the strength to overlook their unpleasantness and rudeness, which we know is driven by fear and vulnerability.  I hope that even if your love for your spouse, parent or friend has waned, you can find it in your heart to do that most selfless thing and care for another person for what will probably be a relatively short episode in your life.

I know that not everyone aspires to be a nurse. I’m not saying everyone can do it. It’s not easy.

It’s not easy even when you love them.

You also have to love yourself enough to know when you can’t do it anymore. There’s no shame in that. You’re human.  Not Superhuman. You’re scared. You’re angry and frustrated. That’s alright. You have my permission to scream, run away, punch the wall.

The last sentence of the Steinbeck quote leaves an indelible mark on me –

“ It sometimes happens that what you feel is not returned for one reason or another — but that does not make your feeling less valuable and good”.

In other words, keep doing what you do – loving and caring. Your FTD’er will probably not reciprocate in a way you would want. Although even up to the end of his life, my husband would randomly kiss me, or make some kind of gesture of love. Well, I like to think so anyway. Maybe he would have kissed anyone who got that close!

When he still had occasional lucidity, he would tell me he loved me with a sadness in his eyes that broke my heart. I really believe that some part of him knew what was happening. The moments were fleeting and became less frequent as the disease progressed.

Keep your love close. It will see you through the darker times. Sometimes it’s a little hard to see and recall, but it’s still there.

Like a little firefly in the dark.

Glowing.

Firefly1

Shutting down – the markers

This is quite the list. It is an excellent example of how capabilities are eroded. Sometimes you barely notice and then bam! Another thing added (or taken away )

My Husband has FTD

The inexorable shutting down process continues with a steady stream of unmistakeable signs of slowing down, as FTD consumes Mr’s brain.  Yes, there are huge language difficulties with the word ‘sections’  being used several times in each sentence as a noun substitute; however, the main symptoms that I am monitoring are the deteriorations in behavioural, comprehension and habits, such as the daily and now twice daily, request for egg and chips.  Here are a few more examples that I have observed:

  • He rarely shows people the photographs which used to come out several times a day
  • Likewise the Professor name badge and the photos on his camera appear only occasionally
  • On most days he has difficulty working out time and reading a clock accurately
  • He hasn’t used a telephone for nearly a year. The last time he got into such a muddle calling the doctor’s surgery when I…

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