Our Families Journey Caring for a Mom with FTLD-MND

It is important to know as you read this journal that this was Cathy's life post diagnosis...

To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.

Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)

Thursday, March 12, 2009

Stages of FTD - "compiled by family & friends"

Stages of FTD

*This information was given by Family & Friends of Loved One's with FTD who are members of the support forum online: http://www.ftdsupportforum.com/

*Stages list was compiled by Vida, an FTD Support Forum member who lives in Spain, She compiled this description of the stages of FTD by asking our 1,500 members for their experiences. This version of the stages might be updated in the future - possibly every time we log another 500 members."

Stage 1) Symptoms that our Loved One (person with FTD) had before I realized anything was wrong and now realize was due to the disease.

Stage 2) Symptoms that LO had that worried me enough to take them to a specialist or search online for more information.

Stage 3) Symptoms that were then obvious to everyone.

Stage 4) Symptoms as my LO got worse.

Stage 5) Symptoms of last stage.

Stage 6) Symptoms of end stage.

Stage 1:
Obsessive
Nervous
Low Tolerance
Heat intolerance
UNEMOTIONAL
ANXIETY
Hypochondria
APATHY
Aspontaneity
Inflexibility
DISORGANIZATION
INATTENTION
LOSS OF INSIGHT
Irritability
IMPULSIVE
POOR JUDGEMENT
PARANOIA
COGNITIVE CHANGES
WITHDRAWAL FROM FAMILY/FRIENDS/SOCIETY
Critical of others
Misnaming
Expressing extreme opinions in public
IRRATIONAL PURCHASES
Mood changes
Dangerous driving/accidents
FALSE MEMORIES
Losing/slurring speech
DISINTEREST
SLEEPING MORE OR LESS
LACK OF AWARENESS
LOSS OF LOGIC
HOARDING
Road rage
INCREASED APPETITE FOR SWEETS
CHANGE OF PERSONALITY
Lack of responsibility
DEPRESSION (for Cathy this was possible but not diagnosed)
Interest in porn
Ringing in ears
Layering clothes
Selfish
Angry/violent
PACING
Difficulty concentrating
Less eye contact
MEMORY LAPSES (Cathy forgot to call & send cards, something she always did!)
Lying
Losing items
Losing track of time
DANGEROUS BEHAVIOR TOWARDS CHILDREN (for Cathy it was leaving her grandchildren unsupervised when caring for them... when we first realized something was not right with her)
ODD BEHAVIORS
Cruelty
No motivation
LAZINESS (napping for Cathy, dusty house... NOT like her!!!)
Blaming others for own mistakes
Not finishing projects
CARELESS WITH MONEY
SHOPPING COMPULSIVELY
Flirting
Hurtful towards others
INABILITY TO FOCUS ON JOBS
Rigid thinking
Wringing hands
Swearing
Selfish
Hyper-religious
Impatient
Irrational jealousy
Sex obsession in non-sexual situations
High sex drive
Repetitive reading/listening/watching
EASILY DISTRACTED
LACK OF AFFECTION
Childishness
Kleptomania
Hostility
Sarcasm

Stage 2:

OBVIOUS MEMORY LAPSES
INABILITY TO PERFORM WORK
Euphoria
Making animal sounds
TALKING LESS
OBSESSIONS
PACING
SHORT CONCENTRATION SPAN
FAULTY LOGIC
LOSING TRACK OF TIME
SLEEPING MORE
Talking to strangers
Pronounced speech problems
Inability to express emotion
STUBBORN
OVER REACTING
Rude
TACTLESS (burping in public)
PRONOUNCED COGNITIVE CHANGES
Inappropriate jocularity
Selfish
GETTING LOST
APATHY
Bad/Short temper
Sexual abuse
Depression
DELUSIONS
WITHDRAWN (no longer calling & keeping in touch with family)
WEIGHT GAIN
DIFFICULTY LEARNING
CONFUSION
FLAT FACIAL EXPRESSIONS
Confabulations
HALLUCINATIONS
PARANOIA
Physical aggression
PERSONALITY CHANGES
Lying
POOR HYGIENE (not like Cathy at all!)
Choking
HYPOCHONDRIA (cathy took tons & tons of vitamins!!)
Rigid thinking
Night sweats
Shuffling
SWEET TOOTH
LOSS OF OBJECTS
HOARDING
DRESSING INAPPROPRIATELY

Stage 3:
ACTING AGAINST SOCIAL NORM
Talk to strangers
FALSE MEMORIES
CONFUSION
LACK OF INHIBITION
PARANOIA
Aggressiveness
Repeat stories
Invent stories
LOSS OF FACIAL EXPRESSION
Slow and shuffling gait
Standing still in the middle of a room, even in busy places
Difficulty in sitting down
Continuing difficulties with speech
Critical of others
BAD EATING MANNERS
Rude
Extremely poor short term memory
LACK OF SYMPATHY
LACK OF EMPATHY
LACK OF COMPASSION
DRINKING ALCOHOL HEAVILY (Cathy did this in private, hid it from us, we found empty bottles & realized what was going on)
Mixing events
Not able to function correctly at work
Unable to learn
Nightmares
HALLUCINATIONS
UNABLE TO USE PHONE/CELL PHONE (Cathy could use it, but had troubles, especially with message taking)
Confabulations
REPEATING SOUNDS WORDS (I have a few journal entries on this one!)
Fidgeting
PACING
STUBBORNNESS
Rigid in timetable
Staring
GRUNTING/growling
INAPPROPRIATE BEHAVIOR
LACK OF COMMUNICATION
SLEEPING MORE (napping, not sleeping regular hours)
TACTLESS
Lack of understanding responsibilities
Lying
No eye contact
Issues understanding bowel movements
NERVOUS
OBSESSION
HOARDING
ANXIOUS
RESTLESS
Subdued
CHILDISH BEHAVIOR
Gossiping
UNCOMFORTABLE WITH CROWDS
Not accept any noise
DANGEROUS/strange BEHAVIOR WITH ELECTRICAL APPLIANCES
Violence
Getting lost
Poor dressing abilities

Stage 4:
AGGRESSIVENESS (This was difficult. Just when we thought she was not going to have this symptom it began, lasted about 4-5 months)
Violence
Feeling insecure
Deep sadness
Emotional instabilities
Disorientation
Rapid loss of short term memories
Asking for dead family members
Beating on walls
CRYING (during movies, listening to music... unlike Cathy)
Yelling/Screaming
Drinking excessive alcohol
DIFFICULTY SLEEPING AT NIGHT/THROUGH THE DAY
LOSS OF INTEREST IN PREVIOUS THINGS THAT WERE ENJOYED (For Cathy this was HUGE: Family, Friends, Hobbies, was an outdoors busy person & became an indoors couch potato)
Constant pacing
Extreme resistance to bathing
Incontinence
Threats of suicide
Not recognizing close family members
Uncontrollable laughter
Tremors
Freezes during a routine activity
Has to be helped with shaving, showering, dressing, eating
CANNOT FOLLOW plot of TV show/CONVERSATION
Weakened swallow reflex
FLAT AFFECT: EXPRESSES ANXIETY, NO EXPRESSION OF ANGER OR HAPPINESS
APATHETIC TOWARD FAMILY & FRIENDS
SOME HALLUCINATIONS & PARANOIA
Haunted expression although a bad smell under nose
Always very cold
Eating non foods
LANGUAGE DIFFICULTIES
Dressing inappropriately
Confabulation
CONFUSION
Stooped posture
Slow walking (FOR US IT WAS THE OPPOSITE... SPEEDY! SHE JUST TOOK OFF WITHOUT US!)
Less strength
CAN'T FOLLOW SIMPLE DIRECTIONS
NOT ABLE TO WRITE (Throughout the disease Cathy could write her name & sometimes other words & family/friends names... it varied. But she struggled with this greatly)
Not knowing how to sit or get up from a chair
Needs help with all the activities of daily living
CAN NOT FINISH A SENTENCE
Not interested in any activity which requires basic skills
NO REAL SENSE OF TIME, location, DATE, etc.
POOR HYGIENE
Makes sexually explicit comments
Dribbling
Emotional bluntness

Stage 5:

DOUBLE INCONTENECE & URINE INCONTENINCE (Cathy's began towards the last month or so only. Not as soon as others I have noticed.)
Inability to walk or even stand up by themselves
INABILITY TO FEED THEMSELVES (Cathy had a lot of help with this, sometimes she would try to feed herself, other times we helped her)
General loss of control of movements
Difficulty sitting up straight in wheelchair
INABILITY TO SPEAK! in complete, intelligible sentences but still speaking gibberish
Lengthy intent staring at individuals, zoning out
Slipping into and out of sleep
DIFFICULTY SWALLOWING, LIQUIDS POOLING IN MOUTH, ETC.
Eating everything in sight (Cathy did this during stage 3 & 4!!!!!)
Agitation
WEAKNESS
Declining comprehension
Not recognizing family members (This was debatable... see post previous.)
NEEDS TO BE WASHED & DRESSED
Doesn't react anymore to loud noises or quarrels
Mute
STILL SMILES (Cathy lost her smile 2 weeks previous to passing away)
Fully dependent
Mostly responsive to visual queues rather than sound queues
No initiative
Rigid
CAN NOT EXPRESS FEELINGS (If you knew Cathy you could guess how she was feeling, but yet it was difficult & we often wondered what she really was feeling.)
Paranoia
Hallucinations

Stage 6:

GREAT FLUCTUATIONS IN TEMPERATURE, BLOOD PRESSURE, PULSE, ETC
Urine will turn darker and darker (Taking in less fluids, less urinating)
WILL STOP INGESTING FOODS, FLUIDS (Cathy did not eat well the last 2 weeks. Although she ate a full meal the night before she passed - but it came back up later)
DEHYDRATION
COLD EXTREMITIES
SHORTNESS OF BREATH
WEIGHT LOSS (Cathy went up 2-3 sizes in the first 3 stages, and then down to 2 sizes below her original size at the end!)
RESTLESS (The last 2 weeks Cathy wanted outside & it was middle of winter here. Even the last morning she tried to get me to take her outside, had a burst of energy & walked down the long halls on her own, with us following her with a wheelchair.)

*Note: I put Cathy's signs/symptoms in all caps. This is just my own opinion on which symptoms I highlighted, I just wanted to briefly show you the symptoms Cathy experienced. This is in no way a complete list, just a representation to give you an idea of the disease.

15 comments:

Vida said...

Thank you so much for posting this. It is necessary for people to understand the difference in dementias. You help with that and I truly appreciate it.

DeeDee said...

Thank you, too, for posting this. I know its a long list, but in ways it brings some comfort to get a grip on the different symptoms. To know that it is not something she can control brings alot of peace and calm. I quickly went through the list, and plan to return to the (your) list again and again. Thanks for taking the time to fill it in. I plan to send it to my bro and sis.

Julie said...

Thank you for posting this. My husband is in the later stages of FTD and exhibits many of the same symptoms. This is a most tragic disease. He is 53.

Anonymous said...

Thanks for sharing your experiences, I had known something was wrong inside my head and insissted on an MRI, it was immediately seen that at 42 yrs old I had the brain atrophy of a 90 yr old man. I am a large and powerful man and the things that are physical scare me. I don't wantt to hurt anyone. I met with a reporter and he wrote a book about meeting me, I hope to publish before I don;t care, but then again as a Master Hypnotherapist and Instructor I am making MP3's and cd's for myself going deep into trance and giving my subconscious suggestions of healing and peacefulness and an extra zip in my step, attitude, I do believe that I can fight a little longer a little stronger, maybe even heal myself! That would be most awesome, then again what else can I think about! I am a Ret. Sgt of United States Search and Rescue Task Force (I went to Ground Zero) Now I feel alone and scared that if I say what I am feeling that I will be ignored more and/or abandoned, the people arond me seem to think alls ok, like they don't have to put anything put there for me, I csn handle it or maybe they are just unable to step outside of themselves in order to make my ending a beautiful and growing experience like yours was. I want to say you are blessed to have spent the time you did together together and that you cared so much gave me great sadness and happiness too. God bless
Sgt Matthew H Tartaglia

kats said...

Thank you for posting this. My wife is 38yrs old and in the final stages of this heartbreaking disease. My wife was diagnosed with this less than a year ago and has progreesed very rapidly since then. I pray that a cure can soon be found to prevent any other families from going through this tragedy. God bless.

Anonymous said...

My nephew was diagnosed with FTD a little over a year ago. It has been a heart wrenching journey so far. He is only 29 years old as of June 2010. This disease is probably the most awful thing I have ever witnessed. I wish there would be something to help him, but the brain is such a mysterious place I don't think that will happen for anyone with this disease for a very very long time. I have days when I can't believe that this is happening to such a young and very inteligent man. He has been given such wonderful care by his wife, father, sister and other caregivers but the time has come I fear that he will need to be put in a dementia care home. He is running away from his caregivers and for his safety this will be the best place for him. There is nothing anybody can say that will make us all feel better, or take away the guilt we all feel about having to do this, but we need to protect him and that is about the only way we can. I just wanted to know what the stages of FTD were so I ended up on this sight. May be this is a good thing for me, to know that there are so many other people out there who understands how we all feel. I never knew about this disease until he was diagnosed with it

cadblog said...

This is the most wonderful resource that I have found to help me in this difficult journey of caring for a loved one with FTD. I rarely (make that never) comment on resources that I find on the internet. But, I must tell you how deeply moved I was by this posting. I can tell that a great deal of love and caring surrounded Cathy during her time of need. I am very sorry for your loss.

My sister, who lives alone and is without children, was also diagnosed with FTD at age 55. It took us 3-4 years to get the correct diagnosis. She never acknowledged that she was ill - she was in complete denial and as the disease progressed, it prevented her from ever realizing that she was seriously ill. Her brothers and sisters had to intervene to help her through the difficult journey ahead.

The majority of the information that we find on FTD focuses on describing the early symptoms of the disease. I have returned to this posting over and over to help me determine where my sister was in the later stages of the disease and what I can expect going forward.

There are so many decisions to make regarding medications, living arrangements, finances, etc. and so many difficult emotional moments. I find the journal entries so helpful because they help validate my thinking/decisions/feelings that I have also experience.

I want you to know that the information that you took such great care in providing has been of tremendous value and comfort to me as I continue on this horrible journey with my dear sister

cadblog said...

This is the most wonderful resource that I have found to help me in this difficult journey of caring for a loved one with FTD. I rarely (make that never) comment on resources that I find on the internet. But, I must tell you how deeply moved I was by this posting. I can tell that a great deal of love and caring surrounded Cathy during her time of need. I am very sorry for your loss.

My sister, who lives alone and is without children, was also diagnosed with FTD at age 55. It took us 3-4 years to get the correct diagnosis. She never acknowledged that she was ill - she was in complete denial and as the disease progressed, it prevented her from ever realizing that she was seriously ill. Her brothers and sisters had to intervene to help her through the difficult journey ahead.

The majority of the information that we find on FTD focuses on describing the early symptoms of the disease. I have returned to this posting over and over to help me determine where my sister was in the later stages of the disease and what I can expect going forward.

There are so many decisions to make regarding medications, living arrangements, finances, etc. and so many difficult emotional moments. I find the journal entries so helpful because they help validate my thinking/decisions/feelings that I have also experience.

I want you to know that the information that you took such great care in providing has been of tremendous value and comfort to me as I continue on this horrible journey with my dear sister

Tina said...

The posting is brillant. Your site is remarkable. My mum is at the end stages of FTD and my aunt is mid stages. Its been a frustating road for the family as most professionals arent very familiar with the symptoms. I am so sorry for your loss but through your story Cathy's memory lives on and inspires the rest of us out there, who sometimes feel isolated and unsupported. Thank you

Renee' said...

HI,what a beautiful web site you have created for cathy, Thank you. I was looking for info. to wn the web and just clicked on the wright one. our Mother had FTLD, and after reading the stages she is in stage 5. has not been able to speak well for about 2 years or little more. 'YES' is a standard word for most every thing her swallowing is limeted and her posture, well when she is walking to the rest room she is so bent over and she can't seem to straigthed up or to even think to do it on her own. we have her in a safe place in a wonderful Care Center and we live close to visit often. Our hearts are heavy with sadness this Christmas season because we did take her out. but we had a joyous time with her in her room with a tree and gifts.Not sure what the next few months will bring for her but we will be by her side praying with and for her . we want her journey home to be a peaceful one. Thank you for your time.
and thank you for this beautiful site I know I'll visit it again.. Blessing .. Ren'

chris said...

Thank you for posting this. It is very helpful to me tonight as my mother was diagnosed with this disease two years ago. we knew something was wrong but did not dream of anything like this as she was in her early 60's. I have been feeling noone understands this disease or what it's like for her or us. the doctors just don't have much to say that's helpful either. thank you again. I plan to read more of your posts later. c p.

Tina Dalgren said...

Thank you! My father has been battling Pick's for 8 years. He is currently in stage 5-6. Was misdiagnosed with early onset Alzheimer's (which is common, I hear) and we didn't learn that it was Pick's until about 2 years ago.

Anonymous said...

Thank you for this blog. My husband has just been diagnosed (last week) with FTD at age 38. It is a terrible shock to me, and I feel very alone.

To make matters worse, we have just (20 months ago) moved to the country we live in; this made diagnosis an expensive nightmare, and now of course we can't access any support groups here as our grasp of the language is still too weak. :-( I have no idea how we will cope yet - I will have to find a way.

Reading your blog, and the comments which others have left here, gives me a sense of connection with others who have experienced and understand this condition. I know the hardest times are yet to come - but being prepared will make a difference.

Hugs to Cathy's family - thank you again - so much - for sharing your experience.

Elizabeth A. said...

I want to add to the chorus of thank yous! I am caring for my mother - (mis)diagnosed with AD because she's older. Reading these lists I see so many of my mother's symptoms and understand better what's been happening to us, where we are, and where we are going. That helps so much.

Anonymous said...

Your blog is still living. Thank you for sharing it. My husband has just been officially diagnosed with Picks with the complication of Motor Neuron Disease. I have never heard of Picks, but I know MND is very debilitating. My husband is 58 and has been showing symptoms for over a year. It took my daughter and I going to his GP 3 times before we were referred to a neurologist. Before this my husband was sent to psychologists, nutritionists and other people to try to help him with his perceived ailments. I don't know what his life expectancy is, but I would like to make the rest of his life as stress free and as pleasant as possibl
e. I am pleased that he has been diagnosed and I can talk to people in the know about it.
I would appreciate any more comments from people who have a friend or family member suffering from FTD/MND.
Thanks you
Denise