Tonight I went through this list & quickly highlighted (by putting her symptoms in all caps) all the signs/symptoms Cathy experienced. To give you somewhat of an idea about our journey. This is in no way a complete list of all the signs/symptoms experienced by Cathy or others with FTD. This is just a list used as a tool to help others understand this disease... a brief peek into the world of someone with FTD as told by caregivers. To help people understand how FTD is different than Alzheimer's Disease. (Note: not all 1500 members of the forum posted their loved ones symptoms, this is just a sampling & a beginning to our list)
The list may seem overwhelming. But what you must know about FTD is that everyone's journey is different, no two journeys are the same. It was explained to us as if you are going down a river & one branch is blocked, you find another path, and then another branch is blocked, and you find another path, until there are no paths left. Every journey is different... yet the same. The signs/symptoms vary depending on which parts of the brain are being affected by the disease. The same areas are being affected with everyone, but at different rates & different times. For example: If you send 10 people into a house with all the lights on & tell them to turn off all the lights, each person will take a different path through the house to do so. All the lights will eventually be turned off but in different orders. Somewhat like FTD. (I know... it was the only thing I could think of to explain it, as I sit here looking around my house thinking, "My Dad would be yelling at me for having the kitchen, living, & hall light on right now!")
In some ways it is difficult for me to post this about Cathy. Because Cathy prior to this disease was none of these things. But... the purpose of this is to inform others about what to possibly be prepared for. Although I wonder to myself... if I had known all of this in the beginning would have I been too overwhelmed??? Uffda! (Yes... but I would have wanted to know!)
Tuesday, March 17, 2009
Thursday, March 12, 2009
"She is Gone" ~ Poem
Every once in a while I find myself on the FTD support forum site online... I go there when I miss Cathy & just need to be in the company of people who 'understand'. I read this poem on the site tonight & wanted to share it with you:
“She is Gone”
You can shed tears that she is gone
Or you can smile because she has lived
You can close your eyes and pray that she will come back
Or you can open your eyes and see all that she has left
Your heart can be empty because you can’t see her
Or you can be full of love that you shared
You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday
You can remember her only that she is gone
Or you can cherish her memory and let it live on
You can cry and close your mind, be empty and turn you back
Or you can do what she would want: smile, open your eyes, love and go on.
~Short poem by David Harkins of Silloth, Cumbria in the United Kingdom
______________________________________
We are taking things day by day, moment by moment. At times I feel so strong... and then at other times I feel so weak. After focusing so much of our lives the past few years on Cathy it is hard to know how to move forward with her gone... spending most of our free time going to see her, knowing that Brad's focus was always on his Mom, always worrying about what was ahead for her. It is almost an overwhelming feeling of freedom (don't get me wrong by saying freedom I mean: freedom from feeling sad, freedom from worrying, freedom to do something other than care for her - her disease took so much from her & all of us).
I was at the Dr. the other day & Mia whispered to me, "Mom, can I tell her about Grandma." I said yes. Mia told her, "My Grandma died." The Dr. said to Mia, "Do you know where she is now?" Mia said, "Her soul is in heaven, but her body is in the ground at the church." (That whole concept took a while for Mia to understand... Brad tried explaining it all to her, it was good to hear she is beginning to understand it all now) The Dr. then said to her, "Do you know that means her soul is in Heaven with a new body, and she is dancing & walking around again now." Mia said, "Yep, she is an Angel." *sigh*
Brad & I watched the movie, "Nights of Rodanthe" last Saturday night. I had read the book & knew the ending... but I still cried & cried. I started crying because of the movie & then it turned into crying for Cathy & then it turned into remembering how the last time I cried that hard was when I was with Cathy when she died. And then all those visuals came rushing back to me... the ones I had finally been able to put away. *sigh* Crying is so healing...
Just before Cathy passed away a friend shared this blog with me (link below). I prayed for this little girls recovery & then I headed off to be with Cathy that Thursday she passed away. After coming home over a week later I got on my home computer again & wanted to check the link again, see how this precious little girl was doing. And I was shocked & saddened to see she had also passed away, just after Cathy did!! My heart was broken for her family. And yet through it all I was completely OVERWHELMED by their FAITH, Amazed by their strength & courage, and touched by how many lives they were touching. I want to share their journey with all of you. Reading their journey has given me a renewed strength. I can only imagine the loss of a child... our greatest fear. It touched me seeing how her Father made a list of all the firsts they celebrated with their baby girl. To help them see how blessed they were to spend that time with her.
http://themcclenahans.blogspot.com/
I have began a book about Grandma for our kids, I am making it on Shutterfly.com. Filled with pictures & memories for them to cherish. Chase sleeps with 3 of Grandma's stuffed animals & Mia keeps wrapping up in Grandma's afghan from the home. At times I have snuggled up in it as well... and faintly I can still smell her, smell is such a powerful thing, it makes me smile & I hug it tight with my eyes closed. A hug... almost.
“She is Gone”
You can shed tears that she is gone
Or you can smile because she has lived
You can close your eyes and pray that she will come back
Or you can open your eyes and see all that she has left
Your heart can be empty because you can’t see her
Or you can be full of love that you shared
You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday
You can remember her only that she is gone
Or you can cherish her memory and let it live on
You can cry and close your mind, be empty and turn you back
Or you can do what she would want: smile, open your eyes, love and go on.
~Short poem by David Harkins of Silloth, Cumbria in the United Kingdom
______________________________________
We are taking things day by day, moment by moment. At times I feel so strong... and then at other times I feel so weak. After focusing so much of our lives the past few years on Cathy it is hard to know how to move forward with her gone... spending most of our free time going to see her, knowing that Brad's focus was always on his Mom, always worrying about what was ahead for her. It is almost an overwhelming feeling of freedom (don't get me wrong by saying freedom I mean: freedom from feeling sad, freedom from worrying, freedom to do something other than care for her - her disease took so much from her & all of us).
I was at the Dr. the other day & Mia whispered to me, "Mom, can I tell her about Grandma." I said yes. Mia told her, "My Grandma died." The Dr. said to Mia, "Do you know where she is now?" Mia said, "Her soul is in heaven, but her body is in the ground at the church." (That whole concept took a while for Mia to understand... Brad tried explaining it all to her, it was good to hear she is beginning to understand it all now) The Dr. then said to her, "Do you know that means her soul is in Heaven with a new body, and she is dancing & walking around again now." Mia said, "Yep, she is an Angel." *sigh*
Brad & I watched the movie, "Nights of Rodanthe" last Saturday night. I had read the book & knew the ending... but I still cried & cried. I started crying because of the movie & then it turned into crying for Cathy & then it turned into remembering how the last time I cried that hard was when I was with Cathy when she died. And then all those visuals came rushing back to me... the ones I had finally been able to put away. *sigh* Crying is so healing...
Just before Cathy passed away a friend shared this blog with me (link below). I prayed for this little girls recovery & then I headed off to be with Cathy that Thursday she passed away. After coming home over a week later I got on my home computer again & wanted to check the link again, see how this precious little girl was doing. And I was shocked & saddened to see she had also passed away, just after Cathy did!! My heart was broken for her family. And yet through it all I was completely OVERWHELMED by their FAITH, Amazed by their strength & courage, and touched by how many lives they were touching. I want to share their journey with all of you. Reading their journey has given me a renewed strength. I can only imagine the loss of a child... our greatest fear. It touched me seeing how her Father made a list of all the firsts they celebrated with their baby girl. To help them see how blessed they were to spend that time with her.
http://themcclenahans.blogspot.com/
I have began a book about Grandma for our kids, I am making it on Shutterfly.com. Filled with pictures & memories for them to cherish. Chase sleeps with 3 of Grandma's stuffed animals & Mia keeps wrapping up in Grandma's afghan from the home. At times I have snuggled up in it as well... and faintly I can still smell her, smell is such a powerful thing, it makes me smile & I hug it tight with my eyes closed. A hug... almost.
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.
*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.
Subscribe to:
Posts (Atom)