Autopsy Results ~ FTLD-MND

It was Thanksgiving 3 years ago when we found out Cathy's diagnosis... & it is Thanksgiving time again this year that we have found out the results of Cathy's autopsy (neuropathologic examination).

The findings indicate that she suffered from a rare disorder:
"Frontotemporal Lobar Degeneration with Motor Neuron Disease (FTLD-MND)".
There was NO evidence of Pick's Disease.
Other terms for this condition include FTLD with inclusions, tau and synuclein-negative, ubiguinated (ITSNU) - often abbreviated FTLD with ITSNU; FTLD with ubiquitin-positive inclusions - often abbreviated FTLD-U; and motor neuron disease inclusion dementia - often abbreviated MNDID. Motor neuron disease is another name for amyotrophic lateral sclerosis (ALS), otherwise known as Lou Gehrig's disease. The important discovery over the past few years was the identification of TAR DNA-binding protein - number 43 (TDP-43) as the major protein that is dysfunctional in ALS as well as FTLD-U. This protein was the major dysfunctional protein in Cathy as well. There was no evidence of tau or amyloid or synuclein protein dysfunction.

There was/is no treatment for this illness. And it is an agressive form of the disease.

Sadly Cathy's father passed away from probable ALS (no autopsy was performed) and her Paternal Grandmother had Dementia. This suggests that a genetic mutation caused both or all of these illnesses, yet at this time they are unable to identify the cause. Research is ongoing...

I am Thankful we have the results.
I am Scared of the results.
I am not sure I can put my finger on all of my emotions at this point.

Most articles I have read put Cathy's children & siblings in a 50% risk group if this is familial. And that would put my children in a 50% risk group if their Father (my husband, Cathy's son) has it as well.

I cannot imagine going through this again.
I am still emotionally drained at times thinking of what we went through with Cathy.

But...

I am looking at this as a gift from Cathy.
We have a chance to prepare & stay 'in the know'.
We have a chance to live our lives for the moment.
Celebrate every day.

And PRAY for a treatment & a cure. For my husband, my children, & our family.

Wishing she were here...

Today I found myself wishing for Grandma Cathy again... one of those moments that I know that if she were here she would be 'here for us'.

Our 9 year old son is home sick today & we are 'stuck' in our camper (our current home while we are waiting to move into our permanent home in 5 weeks) trying to not spread germs around. Hoping he doesn't have H1N1... pushing fluids & giving him Tylenol. We just moved here last weekend, as we are buying the house Brad grew up in - the house Cathy & Gayle built and lived in until they moved to Iowa. I can't leave the kiddos & run to the store for Tylenol and 7up. I can't call Brad because he is over at our old house packing up (where I should be, but I am home with a sick kiddo). And if Cathy were here I wouldn't even have to ask, she would have already been at my door with a bag full of things we would need. She was like that, always taking care of the ones she loved. I miss that unconditional Love. I am sad that my kids will not enjoy that from her. I am sad I didn't appreciate it when we had it, until it was too late...

As I sat here this afternoon feeling sad thinking of Cathy my phone rang... it was Barb H., Cathy's friend since elementary school, she was asking if we needed anything! It was as if Cathy heard my thoughts & sent Barb for her.

As I stroked my sons hair back tonight I thought of all the times Cathy helped me care for him as a baby. How she helped me through long nights of ear infections & took turns walking the floor with me the night before his surgery.

And then I went back to the memory of the day she died, how I stroked her hair back, the way she did for our son Chase. The way I saw her stroke Brad's hair when he would sit on her couch after a long days work. I even remember seeing her stroke Ryan's hair the same way.

I stroked her hair that day once she settled into the chair, I sat next to her wiping the sweat from her forehead & stroking her hair back. Whispering in her ear... I remember everything that happened between Cathy & I that day. Every look she gave me. Everything I said to her. Everything around us was a blur... people were in & out of the room. It was like a scene from a movie when the main subject is on normal speed but the objects around them are a blur. I did for her what she would have done for her boys, her grandchildren...

I miss that unconditional love our children would have gotten from her today. That Grandma that was not scared of germs, that would have walked right in the door & sat down next to her grandson and stroked his hair & told him that she Loved him.

My Mom would do the same thing... she is just 4 hours away... I am so Thankful we are now closer to her. That our children still have a Grandma. But today we were here in Black River Falls... Cathy's home & she is not here.

Tonight I find myself wishing for Cathy again... one of those moments that I know that if she were here she would be 'here for us'!

I read this on a blog I follow today & wanted to share it:

"Sorrow is one of the things lent, not given.

Joy is given; sorrow is lent.

Sorrow is lent to us for just a little while

that we may use it for eternal purposes.

Then it will be taken away and everlasting joy

will be our Father's gift to us, and the Lord God

will wipe away all tears..."

-Amy Carmichael

Where Flowers Bloom So Does Hope ~Lady Bird Johnson

A Wonderful Friend of ours sent us these pictures of her Flowers. These are not just any flowers, they are the flowers that grew from Cathy's seeds. From the seed packets we passed out at Cathy's Funeral.

Aren't they Beautiful? Just seeing them brought a Smile to our faces.
Bright & Cheerful!

Our Friend said, "Every time we look at them we think of her!"

Thank You!

Finally... a place to go to Remember & Honor Cathy!

Finally... 6 months after Cathy passed away her headstone has arrived! It was ordered... but back ordered... and back ordered... etc... We have had Beautiful flowers there with her, but now we have a Beautiful headstone as well. Not exactly something I thought I would ever be excited about, but we all were truly grateful it arrived!!

Here are a few pictures. As we walked away I turned around & saw Mia 'hugging' Grandma. So I snapped a picture & our friend Steve got a few pictures as well. Such a touching moment.

Do not stand at my grave and weep

Grieving is so complex & one cannot predict how you will find your way through that journey. I truly feel I am at a place of healing now. I am able to look back & smile. I am at peace knowing we did all we could do.

I had a dream about Cath this week... I have woke up seeing her face many times since the day she passed, but it has been memories of that day, & I have struggled with that. But this time was different, this time she looked like her old self. She was smiling at me & she gave me a big hug. She said something to me about going home, but I cannot remember the exact words now. I just remember the feeling... feeling Loved by her, feeling her arms around my shoulders, seeing her smile... I am so Thankful for that dream.

Sadly our family is still struggling... so I will continue to Pray for healing for everyone. I will continue to Pray for everyone to respect the other & how they are grieving, to not rush anyone one way or the other, to let time heal, to be understanding, & to not let our grief turn to anger against one another. You really do not realize just how much a MOM holds a family together... until she is not here to do so.

Special Thank You to all of Cathy's family & friends for their support over the past few months. Many have been there for us to just listen while we struggle through our grief... not taking sides or pushing us one way or the other. Just being there. We hope that we can return the favor someday. Love & Friendship are such a powerful thing! Even in the midst of grief we feel Blessed!

Memorial Service - "Circle of Life"

Last Saturday Gayle, Jean, Barb, Brad, & I attended the "Circle of Life" Memorial Service. It is a ecumenical service and is held annually to remember loved ones who died throughout the past year. It is Sponsored & Planned by Black River Memorial Hospital, Interfaith Volunteer Caregivers, & the Local Nursing Homes.

It was a Beautiful Service and the Program included Reading/Poetry, Music, reading of the names of those who have died & giving of roses to family/friends, photo slideshow, & a candlelight song. Many tears were shed as we saw Cathy's photo flash across the screen & as we heard the bell ring after her name was read.

I have to honestly admit at one point during the service I was thinking, "No, I don't want this sadness to overwhelm me again. I don't want these feelings to be creeping back up inside me again." I had a fleeting thought of getting up and running out of the room. I had been looking forward to the service, as a way to remember Cathy & put some closure on my feelings. But I was not prepared for the sadness again or to see everyone else still grieving. I recognized the sadness this time & was able to let go of it. Unlike the weeks after Cathy's passing when I let it take complete hold on my heart.

After my Grandmother passed away this month I realized that I was just plain tired of feeling sad. I had been feeling sad since the day Cathy was diagnosed with this disease. And I let it suck me in... deeper and deeper. I don't want to miss anymore joys in life. And I realize that I cannot move forward carrying the past with me. So I am holding on to all of the things about Cathy & my Grandma that make me smile... and I am going through that door to the future. I have finally realized it doesnt mean that I am forgetting them or dishonoring them. I know they both would want us all to be happy.

This Memorial Day weekend we will be camping in the campgrounds that hold so many memories for Brad growing up. Memories of his Mom & of his childhood. I hope to create those same type of memories for our children, memories of fun & happy times. I can't help but wonder how happy Cathy would have been, camping with her family & her grandchildren at the Lake. (Thankfully our kids have a few memories of being there with Grandma... especially getting Ice Cream at the campground store!) But this time as I think of Cathy I am not going to let my heart be overwhelmed with sadness, I am going to Smile. Smile because she Loved us. Smile because we Loved her. And Smile because I have HOPE for the future again!

Only those who avoid Love can avoid grief. The point is to learn from grief and remain vulnerable to Love.
--John Brantner

God's Gift of Time

we all need a time to grieve-
quiet time for reflection
to sift through memories
and come to grips
with what has happened.

we all need a time for tears,
not for the one who is now
at peace in heaven,
but for ourselves as we realize
that things will never be the same.

we all need a time to just "be",
when we can open ourselves to God
and let the reassurance
of His everlasting love
start to heal our broken hearts.


~I read this today on a Hallmark sympathy card... and it struck a chord in me... it is exactly how I have been feeling. Brad & I were both feeling we were finally beginning to heal from losing Cathy and then this week my Grandmother passed away suddenly (yes, she was 91, but she was still cooking and cleaning and had traveled up to visit us 4 times in the past year!! She even rode on the snowmobile with Brad this winter! At any age it is difficult losing someone you Love.)

My heart is breaking once again for our children... losing 2 Grandma's in 3 months. We lost Cathy slowly and painfully... and we were expecting it, yet we still were not ready to let her go. And we lost Grandma Gladys quickly and peacefully... yet we are still not ready to let her go. They were friends. Grandma helped with Cathy when she lived with us in Iowa. She sat with her when I needed to run an errand or go to a school event. And I Imagine Cathy greeting Grandma Gladys into the doorway to Heaven with a big hug & a smile.

Cathy's Birthday

Today would have been Cathy's 55th Birthday. When I wrote the last post I was having a 'down' day. I honestly feel like the days leading up to today were much harder than today actually was. I have been thinking about today all month & I let it bring me down. Remembering all of the Birthday celebrations we had with her. Cathy Loved Birthdays! She would cook a Birthday Supper at her house and then follow it with Cake & Neopolitan Ice Cream.

The kids & I sent prayers up for Grandma last night. They both said "Have a Happy Birthday Grandma" & we talked about how she is dancing up in Heaven to some good ol Rock N Roll music.

Brad is working near his parents place again... and he is hoping to have a nice supper with his Dad tonight remembering his Mom.

Happy Birthday Cathy, you will Always be in our Hearts!

Struggling...

To be honest... I truly felt like throughout Cathy's illness we were preparing ourselves for the inevitable. That we were able to grieve 'ahead of time' knowing what was ahead for her & us. But I was so wrong, at least for me. I have my good days & bad days. And lately, with her Birthday coming up on the 17th I seem to be struggling. The reality of it all is finally hitting me... all of the emotions of the past few years coming to a halt with a sad ending. I became so much closer to her while helping care for her, that it made it even harder to let go in the end.

It is hard to let go... hard to move on without the guilt of moving on without her.

Note on "Stages of FTD" post

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!)

"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.

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.

The seed is Hope, the Flower is Joy

Late Entry from Saturday, February 7th, 09

Tracy & I stopped by the Flower shop in town to check on "Grandma" ribbons for the flowers. And while we were there we asked if they had any seed packets... in February. The lady smiled & said, "It never hurts to ask", and then she returned with the display from the previous spring! So we bought up all the flower packets... at a great price, Thanks Falls Florist!... made some labels to place on them saying, "Plant these seeds with Love in memory of Cathy". Cathy LOVED the outdoors including gardening & flowers. We wanted to Celebrate Cathy's life and we felt like sharing seeds with her family & friends was one way to do that. Sharing Cathy's Love of Flowers and planting hope for the future that will bring joy & a smile when the seeds begin to grow & bloom.

Toby's Speech

Good afternoon. On behalf of the family I would like to take just a couple of minutes to speak to you about what type of person my mom was. It was this Friday when a lifelong friend called and said “man your mom was tough…I mean, what other mom liked snakes, loved to coon hunt, and could pull-start a three wheeler?” For me that is where my grief began the transition to a celebration of life. For the first time in a while I began to think more about the good times than worry about what was ahead.
There were some key traits that defined Mom. First of all she really was tough… and fun. Conversations with friends and family reminded me of stories that reinforced how strong she really was. Like the time she was coon hunting on Hawk island. After miles of walking and a fun-filled night of coon hunting with her my dad it was time for the return trip across the river in the pickup. What they didn’t know is that the dam had opened a gate causing the current to strengthen and the truck became stuck in the middle of the river. To make matters worse the water was now rising and was coming in the doors of the truck. With temperatures well below freezing, they knew they had to get to shore quickly so they waded to shore with Cathy piggy back on Gayle. After a second trip back to the truck to retrieve the dog who was not about to swim when it could be carried, dad went for a tow truck. A while later he showed up with Tubby Kreuger. Tubby looked at the truck, half submerged in the middle of the river, and then at my mom and dad shivering on the shore and said “Well I ain’t going out there… and she ain’t going out there so I guess it is you.” And off Dad waded into the icy water with tow cable in hand. They arrived home half frozen and in need of a hot bath. Now some of you may say “what is the big deal? Sure she may have gotten a little bit wet and cold but what makes that so special?” Well the part that I left out was that she was 8 months pregnant at the time! Today people might say that kind behavior was reckless but I say it was that same toughness that helped turn her boys into men.
Another story I remember is when we one about a simple trip to the grocery store. Mom was driving and on the return trip we always wet up the hill by the old bottling plant and some how the kids in the back seat always encouraged her to go a little faster than she should up the double humps on the hill. Well this time dad was with and riding in the passenger seat of the rusted out Toyota. I think she was a little reluctant to go as fast as usual so us kids in the back seat gave her a little extra encouragement by yelling “hit the gas mom!”. That in combination of the “don’t you dare look” from dad must have been enough to cause her to push her foot down a harder than usual and we hit that hill like she was driving a dune buggy in the Mojave Desert. On the first hump the kids screamed for joy causing the gas pedal to stay to the floor. On the second hump I’m pretty sure we caught air…maybe a little too much air…and the back part of the passenger seat my dad was glued to fell through the floorboards of the car. Pure joy for us kids but I’m note sure dad said a word the whole way home.
I will also never forget the time we got a wood splitter and she through a fit. “Why do we need one of those when I can split wood just as fast at that thing?” I think dad was a little perplexed but also amused so he proposed a “split off” with the log splitter and she graciously accepted the challenge. When the contest ended, the wood on the ground indicated it was a draw, but victory was in her eyes because while she was red in the face and dripping with sweat…she did not lose to a machine. The other reason I think mom won is because I remember splitting a whole lot of wood by hand after that day…wishing we had a wood splitter.
There was also the time she picked the kids up from the movie in our 56 Chevy. We begged her to “peal rubber” and she did only to see the flashing lights of the patrol car in the rear view mirror. Imagine the surprise of the officer to find a mom with 3 kids in the back seat. She simple rolled down the window and with an angelic grin said “sorry officer…the throttle stuck”. The officer simply said “tone it down Cathy”.
Yes she could be wild at times but as I remember the crazy things mom would do I also remember her most redeeming qualities…her kindness and generosity. Anyone who knew her could tell you a story of how she helped them in some way. I witnessed it countless times and she never expected anything in return. If someone was in distress she was there. If someone needed something that she could provide, it was theirs.
Like many of us, she was an imperfect person in an imperfect world. She was a Wife, Mother, Grandmother, Daughter, Aunt, Sister, and dear friend. She will live in the memories of all that met her and be forever immortalized by the lives of her grand children and future generations.
And finally, on behalf of the family, I would like to thank some of the special people that have shared the last couple years with us. The wonderful, caring staff at Pine View, the many friends and family that came to visit and care for her, and all those who have offered their prayers and condolences. One good thing that has come from this tragedy is the reaffirmation of the goodness in people. Thank you very much and god bless.

Thank You's & Poem

I am not sure where to start... this week has been a blur. I want to let you all know that we plan on leaving this site up... as a remembrance to Cathy & to help those who are just beginning their journey with this disease, to maybe give them somewhat of an idea what they are facing & how to get through it.

Toby & I will also be posting new information on here in the future. And I would also like to post what Toby read at his Mom's funeral... some great Memories of Cathy!! That enabled us to all smile & laugh in the midst of tears.

I want to say a HUGE THANK YOU to all our family & friends for their support over the past week. Having the house full of people was so HEALING for us all. A few nights Uncle Roger played his guitar... and a few of us sang along (what happens in Wisconsin... stays in Wisconsin!), it lightened the mood & Cathy always Loved music & dancing! Thank You to everyone who brought food over, sent flowers/plants, sent cards & memorials, sent their thoughts & prayers through email, etc... A Special Thank You to Rev. Thoreson, the ladies of Little Norway Lutheran Church, & Dave the Organist. Also a huge Thanks to Buswell Funeral Home... they were ahead of us each step of the way & helped make things go smoothly amongst all the emotions involved!

Also Special Thanks to Sue & Bill... for traveling the miles to be with us Monday, having their support meant a lot to us. We did not ask to be on this journey together... but having someone who 'knows' what you are going through & understands the depth of it all speaks volumes to our hearts. They are truly an amazing family & our thoughts and prayers continue to be with them as well.

In Gayle's words: "It is difficult to find the words to express our feelings on the great job of the staff at Pine View Care Center. These people care & love their patients. It's not just a job, rather something they love to do. As a family we made many good friends that we will always remember."

And from me: Thanks to the staff that were with me on Thursday during Cathy's passing. As a nurse I have been with patients as they pass... but never with someone I Love, I had no idea how difficult it would be. Words cannot express what it meant to have all of you around me & Cathy. Thanks to the CNA's, the Nurses, & Shelly... for rubbing my shoulders as I tried to hold back tears letting Cathy go.

Friday morning I woke up & went out on the front deck to get my morning coffee... diet coke... and as I reached for it I was overwhelmed by the Sunrise. It was so Beautiful & just over the treetops... yellows, oranges, blues... it seemed to embrace me in warmth... & it felt so refreshing, like taking in a big breath of fresh air. I felt almost as if it were a sign from Cathy. - And then later on that day Gayle said to us... "This may sound strange to you, but this morning the sunrise was so beautiful & reflecting off all the mirrors on the cars." He felt it too! I do believe it was a sign from her. How Amazing! (Some of you may think... you guys are losing it... I know our emotions are wide open this week, but I know some of you have felt those moments too after losing someone you Love.)

Below I am going to post a poem Cathy wrote. Our son Chase, age 8, read this poem at her Funeral Monday. I actually tried to talk him out of it, thinking he could not get up in front of a church full of sad people to read it, but he finally said to me, "Mom, I am not going to change my mind. I am doing this for Grandma." And he did. My heart was soaring in the midst of sadness. We were so Proud of him & we know Grandma would be too!


OF ICE AND MEN

From young men dressed in orange, black and white.
They transform to giant athletes skating with might.
All sizes and shapes, goalies, forwards and defense.
They skate and shoot, no challenge too intense.
Checking and hitting the boards with a crash,
Sticks reaching, swinging. Oh, no! There’s a slash!
A player goes down, soon a whistle blows,
Their player, our player, no one knows.
All stomachs are tight, hard to stand the suspense,
With help, the player rises and skates to the bench.
Everyone claps and cheers with relief all is OK.
No matter which side, it may be your player some day.
As the game goes on, the shouting gets fierce,
Parents and friends wonder, can they ever hear us?
Win or Lose, when all is done,They shake hands and skate off, friends everyone

~written by Cathy Handly

Funeral Arrangements Info

Friends & Family are invited for:

Visitation on Sunday, February 8th, from 5-7 pm at the Buswell's Funeral Home (106 S. Second Street, Black River Falls, Wisconsin).

Funeral Service will be held on Monday, February 9th, at 3 pm at Little Norway Lutheran Church (N4755 State Hwy 54, Black River Falls, Wisconsin... approximately 4.5 miles west of town)

Please join us at the church for a light meal after the service to Celebrate her Life!

Memorials may be given to either the Mayo Clinic Alzheimer's Research Center, 200 1st SW Rochester, MN 55905 -or- the Jackson County Humane Society, 403 Pineview Rd, Black River Falls, WI 54615.

Online condolences are available at http://www.buswellfuneralhome.com/

Thanks again for all your Thoughts & Prayers!!
The Family of Cathy Handly

Cathy is in Heaven now

Cathy passed away today at 3:30pm. I was sitting by her side stroking her hair & telling her we Loved her & that her boys were all going to be ok. Telling her it was ok to go & be with her Dad.

We are overwhelmed right now... so I will post more later.

Funeral & Memorial information will be posted as it comes available.

Thank You for all of your thoughts & prayers.

Please Pray for Cathy

Sending a Prayer request out to all our family & friends...

I am praying for:
Comfort in her suffering,
Peace for her fears,
& that God will surround her with his Loving Presence.

Safe travels for all of her family & friends.

Not good signs...

Today has been another exhausting day for Cathy. Not being there with her it is hard for me to put it into words... but after talking with family, friends, & the staff I understand that the signs are not good... She is not eating (although tonight Gayle fed her supper, but after he left it all came back up), her color has changed, she has mottling on her hands, she is running a fever, she is unable to keep her meds down, she is weak, she can still walk but they used a wheelchair to take her down to the dining hall, and she has lost her smiles.

I picked my parents up tonight at the airport & they were planning on staying until Sunday to visit us before heading home with Grandma (Grandma has been here visiting us for 2 weeks). So now they are going to watch the kids so I can go over to be with Cathy & Brad. I want to be there with Cathy as much as I want Brad to be able to go to work knowing that someone is there with his Mom... so his mind is on work & not his Mom. (as much as it can be)

Toby & family are also heading down tomorrow from North Dakota. Gayle is working out of town (he has needed to go and been distracted with Cathy the past few weeks, but now he has to)... one state this morning, swung through and saw Cathy at supper time, and off to 2 more states tomorrow & then back home tomorrow night... ugh. While Gayle was there tonight she ate most of her supper... but after he left Barb was visiting and it all came back up. It seems as if she is trying to be strong when Gayle is there. I wonder if this is true... you hear of it happening, being strong for those that you Love... Holding on for them. But with this disease it is so hard to know?

Update from Barb S

Things are pretty much the same today. Gayle thought she looked better, I on the other hand thought she was weaker and more tired looking. She went to the dinning room in the wheelchair and had a frozen icey, something different. It went down well, but a few minutes after is when she had problems with getting air. Then Cathy and I went back to unit and Shelly and I entertained with Karaoke,(missed Jean) but not any smiles today and trust me it's something to laugh about. I decided today that I'm not going to feed her anymore in the dinning room at snack time, I'll leave that up to hospice,to risky. In the unit there are nurses close by if needed. Gayle went out of town, so I made sure when I left today that they call me if she gets worse and Brad is working, I'll go right away. I've also made arrangements at work if I need to go over on a work day. Angie said Toby called today to check on things. I made toffee bars for the staff up in the unit today to thank them for all the TLC they give Cathy. Well, I better get some supper and then Pete and I will check on Cathy before we go to the hockey game.

Cold...

Cathy woke up with a cold early today. She is full of phlegm and unable to cough it up. I was surprised because last evening Gayle & I took Misty (her dog) in to see her during the SuperBowl and she seemed to be doing better. They had tried cutting milk products from her diet & I was hopeful that was causing all the extra phlegm. But now even breathing is difficult for her & exhausting... Chase & I went in to visit her at noon, leaving Mia in the car with my Grandma (Brad had called to heads me up that she was not doing well today at all... and maybe not to take the kids in... but Chase wanted to see her). She was sitting in the TV room when we walked in & looked at us with a half grin. She didn't smile again while we were there... except for when Chase said in her ear, "This is our secret Grandma... but you are the Best Grandma I've ever had!" Her smile came slowly & she raised her chin up... as she smiled a thick bubble formed between her lips...

When she started to gag on her phlegm she would sit upright and make sounds... I would put my hand on her back. She would then lean back and grab for my hand. Just looking at me with a blank stare. As if piercing a thought into my soul... I can't tell you what she is thinking/feeling... I wish I could. It is such a helpless feeling.

Just before we left Chase & I held her hands to say a short prayer with her out loud. As we got up to leave she followed us & wanted to go with us. She walked slowly & seemed so tired today. She was unable to push the door open so she leaned her back against it and it only opened a slight bit... but enough to set off the alarm... the aide came and took her to the dinner table & we walked down the long hall... that we have walked so many times before... but this time with even heavier hearts. For the first time ever since we moved her in I did not want to leave. I just wanted to sit there and hold her hand. Or know that someone was going to be with her and hold her hand.

See note from Barb today below... It sounds like they have started her on Abx and changed a few meds to hopefully help with the phlegm... they are also suctioning her & have been since Wednesday.

Note from Barb S

Hi everyone, Just an update on Cathy's day. I stopped on my lunch break today and big change since yesterday. Very weak, needs wheelchair to go outside the unit and it was the first time that she just gave me a blank stare like she didn't know me. I had to go back to work, but went over after work and Jackie was there getting ready to take her for a ride in the wheelchair out in the main part of the home. After Jackie left I just sat and talked with Cathy and she just held my hand tight and had that stare. They had to suction her again just before I got there because of all the secretions. Hospice is keeping close watch on her. The Dr. has now started an antibiotic and a different med for the secretions, hopefully it'll help. I'm off tomorrow, so I'll spend alot of time with her and will keep you posted. Love to you all! Barb

Family visit

We had a good weekend with Missouri Family! Gayle's step Mom Rosalie, Sister Lisa, & Niece Sis were here. Cathy had smiles for Lisa Friday night when we visited & for Lisa and Sis Saturday. Rosalie went with Gayle on Sunday and took her a musical card... that she carried around Sunday & Monday! She LOVES those musical cards.

It was nice to have them here visiting, have a few laughs singing Karaoke on the wii!! (what happens in Wisconsin, stays in Wisconsin!) It was Brad's birthday this weekend & it was also good to have them as a distraction to cheer him up! And it was Wonderful to have a good cook in Cathy's kitchen again!!!

a few changes...

Here are a few changes in the past 2 weeks:

*Gayle got her a new chair... it's a wing back that she can sit more upright in & if she falls asleep her head falls to the side and rest on the 'wing'. It is easier for her to get in and out of as well.

*Brad & I were talking about his Mom and we both have noticed a 'twitching' in the corner of her right eye... not in her eye but the skin near the tear ducts.

*Her lower lip just hangs open... you can see her bottom teeth. It is very rare to get a smile out of her.

*She is sleeping more often... falls asleep when you are visiting.

*Looking around you to see the TV... very short attention span.

*She has been holding our hands for a few months... but in the past week has been grabbing for our hands more often

*Wanting to leave with us again... follow us out of the unit

Note from Barb S

Hi everyone, Pete and I just got home from seeing your mom. This afternoon, Jean, Diane(hospice volunteer) and I took Cathy to the dinning room to listen to a couple sing and a drummer. Cathy ate a pudding cup and a dish of yogurt. Not her usual smiles or tapping feet to the music. Then Jean and I stayed awhile and Shelly was doing Karaoke back in the unit, so we joined with your mom. I can see why she smiled then, she probably wanted to laugh at us. The 3 of us singing, but we sure had fun. Then Jean left and I and Cathy even danced to Shake-RattleNRoll. She did great! No wonder she was tired tonight. When we got there tonight she was in the T.V. room, but went back to the supper table and ate more for me, so that was good. She wanted to go to bed about 6:20 so we took another friend of ours that is up by Cathy now and we went to Pub Night. When we got back up there your mom was back in the T.V. room. The nurse said she was coughing so they told her to get up and she got out of bed and went to watch T.V. We sat with her until the coughing cleared. She was happy to see Pete and just smiled and held his hand. I'll go up a couple times tomorrow also to check on things. Love to you all! We're here for you if any of you need to talk. I know how hard it must be for you Toby being so far away. Love, Barb

update from Brad

I just talked to Brad and he said she is better than yesterday. She only ate about 25% of her breakfast and is struggling with eating... She didn't greet him with the usual smiles. He said she just looked at him, in a way she has not before. What is she trying to express to him? Pain, fear, tiredness, acceptance, sadness.... if only we knew exactly. She kept leaning into his shoulder. When they sat on the edge of the bed she leaned her head into his shoulder. When he walked with her to see the birds she leaned in towards his shoulder as well. And she headed for the door today, he tried to distract her, but she kept going for the door again. Cathy always loved the outdoors, I can only imagine she needs to get out & get some fresh air.

She had lots of visitors this morning... Jean, Barb S, Jackie, Barb H, Brad, & Gayle (he has been going a lot every day).

Again she is a bit better... but not as well. It is so hard watching all of this happen... with a helpless feeling & no hope for the future.

One Year

One year ago today we moved Cathy into the Nursing Home...

Another Downturn...

The last 24 hours have been difficult for Cathy. Something happened last evening... she most likely aspirated something. We are not sure if it is the stomach flu, something she ate, or just phlegm... but she is not doing good. They had to use a wheelchair to get her back to her room after supper (dinner for those of you on the west coast). Whatever it was that happened really scared the nurse. Today I got a call from Brad & Gayle to let us know what was going on & I then called Jean & the NH staff to see what they thought... did the kids & I need to head over? Hospice discussed a few options with Gayle & Toby about medications... antibiotics, etc. Tough decisions for them. Whatever they decide I am behind them 100%. I know they Love Cathy & that they will do what they feel is best for her, I cannot imagine having the weight of that decision on my shoulders.

Talked to Jean again this afternoon. (She braved the risk of getting the stomach flu to see her friend!) She said Cathy kept reaching for her hand to hold & she just stroked it. Cathy also looked at her with eyes seeming to say to her, "Help me." ((((sigh)))) As of this afternoon she had not been able to eat or drink anything & she was beginning to run a fever.

The one constant comfort we have had with this disease is that Cathy has not been in any pain, but now... we are not sure. Watching her eat she looks uncomfortable & she struggles. She has no way of telling us she is in pain. Her vitals are stable. It is hard to say. I hope & pray that after all her suffering that she will not have to endure pain as well.

Later this evening Jackie went to visit. Cath was able to walk down the hall with her to see the birds... but she was not very stable on her feet.

I just talked to the night nurse (I don't normally call & bug them... but I needed some news tonight) & she said Cathy was sleeping. She felt she was doing better & that after Tylenol her fever was gone.

It is hard to say what the next 24 hours will hold... this disease is SO unpredictable!! In the past Cathy will have a bad day & then rebound the next. But each time she seems to come back weaker. And after talking to the people that care for her & are with her every day... the general consensus is that the time is drawing nearer... (I just can't find the right words for this... nor do I want to type the end. It is hard enough to post now with such little good news or something to laugh about.)

So... we are waiting til morning to see if we should head over or not. I have never wanted to predict the future, I am a firm believer in God has a plan & we are to trust in it... but it would be a great comfort to know when we should be there with her, in the end. I know everyone reading this has had this experience. For me it was losing my Grandfather... he was in the Hospital & my Grandmother did not want to leave him, we talked her into going home for a quick shower. I took her while my Mom & my Aunts stayed with Grandpa. As we walked off the elevator on our return to his floor they were standing there crying... he had just passed away. Grandma was devastated, she had been there by his side for months, and was not in the end. Looking back I remember just as we were leaving her house to return a family friend stopped by for a short visit, I truly think that God sent him to delay us, that Grandpa didn't want her there at the time of his passing. Just my thoughts...

Swallowing...

Swallowing still seems to be the biggest change/challenge for Cathy. She seems to be more comfortable with certain people feeding her. On Monday there was a meeting with the NH, Hospice, & Gayle to discuss what would be best for Cathy. The bottom line is that we all need to work together to "Care for Cathy" & I believe that everyone is doing the best with the knowledge they have. It sounds like breakfast & lunch will go back to NH staff & snack time will go to Hospice. Let me say that there is alot of 'Emotion' with this issue for all involved... the NH staff has become attached to Cathy while caring for her the past year & they are now familiar with her disease, Hospice having just came on to help is just beginning to understand the disease & get to know Cathy, & Gayle is just wanting what is best for Cathy. It is frustrating for me being 2 hours away... wanting to help and not being able to... Quite honestly I worry about Gayle & his health. He is under so much stress with worrying about Cathy's care, dealing with Cathy's illness, still keeping up his full time job, running a personal business, & dealing with day to day life. Gayle would say 'not to worry'... but we do!

The kids & I spent last weekend there again. I didn't take the kids over to see Grandma since the stomach flu has been going through the NH (and I couldn't imagine the kids walking down the 2 long hallways without touching anything...). I went over both days and spent some time with her. On Saturday I missed Hospice by just a few minutes, it was noon & Cathy was asleep in bed. She had not been sleeping well at night & had not eaten much for dinner that day. So I headed over to KFC & got her some good ol' mashed potatoes & gravy and some pudding from Barb H. and took it back for Cathy. When I got back she was so tired that she only opened her eyes briefly and didn't even focus on me. Usually she looks at you and smiles & then closes her eyes again. So I pulled up a chair and sat next to her, stroking her hair as she slept. (And watching the movie Fly Away Home) After about 20 minutes she opened her eyes and smiled at me, sat up, & looked over at the KFC sack. :) She ate all of the pudding & about 1/3 of the mashed potatoes. (It is awkward even for me to feed her now, since I am not there on a daily basis I was asking the staff to help me out with what works best for her.)

After her snack she got restless & one of the CNA's told me that sometimes means she needs to use the restroom. So I took her to her room and she laid down. I stood in the bathroom smiling at her & she got up and came in to use the bathroom. Once again she does not have the strength/use of her hands to pull down or up her clothing. I also noticed that she was wearing some type of depends underwear instead of actual underwear like last week. And then trying to get her to wash her hands was a challenge again! I would turn the water on and she would reach over and turn it off... we did that a few times until I just stood behind her and helped her wash them. It made me think about when she was helping me potty train our son Chase... and of course that made me cry. Here I am helping her go to the bathroom and wash her hands now, at the age of 54.

Jean is in town from Florida to spend some time with her family & Cathy... but due to the stomach flu at the NH she is unable to visit. It is heartbreaking knowing that she is here but can't see her! But we don't want to see her get sick either & take it home to her family. I am hoping by the end of the week Jean will be able to spend at least a day with Cathy. For Cathy & Jean's sake!!

Changes again

Honestly I have been both anxious & nervous to go visit Cathy since her bad day last week. I was afraid to see her worse... yet wanting to just 'be' around her. The kiddos & I went over this weekend and I did notice a few changes... one for the better, the rest for the worse... I am Thankful for at least one small glimpse of 'better' in the middle of all this.

Better: it seems that she is more 'alert' (for lack of a better word). Her eyes at times seem to have that old sparkle back. Most likely this is due to the change in her meds. (I think they took her off the Seroquel & lowered the dosages of the rest of her meds...) She is less 'blah' & her eyes do not seem as distant. I realized while sitting with her in the main dining room Saturday that she reacts differently to the people she knows vs. the people she does not. (I knew this in the past, but have been worried things were changing for the worse) People would walk in that she didn't know & she had no reaction. But when a family friend walked in she was all smiles & later when Gayle walked in she was all smiles again! I also asked her if her Buddy John had visited her... and she turned her head towards me slowly with a huge grin on her face!!!! John had visited on Friday & she remembered! Her eyes glowed & she was grinning from ear to ear! - Today I talked to Brad and he said this morning she greeted him with a big smile & actually got up and came walking towards him! (She does not always have the strength to get up on her own anymore... it just depends on the time of day & the day in itself.)

Worse: Swallowing, Mobility, & Weakness... Barb & I were there for snack time both days. I was Thankful when we got there on Sunday that Barb was feeding her... both the kids had alot of questions. (And it was at that point that I realized I cannot take the kids at eating times again! More to follow below.) Barb mentioned that Hospice was having a meeting today about feeding, some of the girls are uncomfortable feeding her & they were going to help them out. There is a BIG change in her swallowing/feeding in just 2 weeks. 2 weeks ago she could feed herself with help on and off but Sunday she could barely lift her spoon. As she lifted her 'baby' spoon up she would lean forward with her mouth open... like a baby bird... and she could not get her mouth & the spoon to meet sometimes. Barb would have to help with each bite. In fact Barb fed her most bites. Strangely she could grasp her 'thickened' chocolate milk glass & attempt to drink it (it seems that she is very thirsty and she wants to gulp it down). With almost every bite she would gag... most likely aspirating. She used to be able to cough at this point, and then when she could no longer cough she would make a coughing sound, but now she can only open her mouth & gag. It is awful to watch. She turns slightly red, her eyes water, her mouth is open, & she gags.... she aspirates. (When a person aspirates their lungs can usually remove the foreign object and carry it out of the body... as long as Cathy is active she will have a better chance of her body doing this, but once she is no longer active these foreign objects will lead to infection...and that is one of the main causes of death with this disease) To be quite honest it is both scary & heartbreaking to see. Barb is so good with her... patiently helping her eat, holding her chin up, talking to her softly...

I also noticed her walking. As we walked down to the main dining room Saturday I thought... this is different... she is looking down at her feet, her shoulders are slightly slumped over, her speed is slower, & her knees seem to be lifting higher, like she is working harder for each step. (We used to say how she would walk like she was 'on a mission'... just take off with or without you looking straight ahead) And then Saturday night we went Ice Skating & it hit me... (it was only my 2nd time on skates, thanks to the schmidts for letting me borrow skates, or maybe not... LOL... it was Mia's first time & she did a great job!)... as I was skating I realized I was watching my feet... when I would get brave & look ahead I would start to wobble & look right back down at my feet again & lean forward so I wouldn't fall... JUST like Cathy was doing in the hall! She is going in the opposite direction... I am learning how to skate & she is trying to remember how to walk!

She is still very weak... she tugged at her pants to let me know she needed to go to the bathroom. I helped her by pulling her pants down. She doesn't remember to wipe or wash her hands... you have to do this for her. And then you have to help her pull her pants back up. She is still wearing panties for now... And there is now a mat on the floor by her bed in case she falls out... trying to move around in bed or trying to get up & down. Since it is so hard for her to changes positions. Half of the time she needed a boost from me to get in & out of her chair... other times she was able to rock herself up on her own. She is still more tired. Taking naps, laying down while you are visiting. She also still enjoys watching TV, although she does not react to the funny scenes, she reacts to the music. She smiles whenever there is a song on. And Sunday when the church group was singing she was intent on listening to them, smiling each time they would look her way.

Kids: We have wanted to not shelter our kids from Grandma's illness. And up until this point we have been very open with them... taking time to talk with them & letting them ask questions. But the looks on their faces Sunday watching Grandma try to swallow... I just can't do that. Mia asked me, "Mom, is Grandma dying? Why can't she eat right?" And Chase just stared at her and then would look down and then look back and then look away again. After we left I talked with them about things. I explained the best I could what was going on. Chase said he still wants to see Grandma... but not when she is eating if that was OK. As always he says, "I don't want to forget Grandma. I don't want to forget all the fun times we had together like when we went to get ice cream. I want to see her." And Mia just repeated what he said... as Chase rolled his eyes at his little sister for repeating him... she still is too young to grasp it all, but she is grasping enough. So from now on I will try my best not to take them at eating times... and if we come at a snack or meal time... I will have them sit in her room & watch a movie. I am mad at myself for not removing them from the situation at the time Sunday, but we were there in the middle of a church service, I kept thinking it would be rude to leave, but looking back I should have taken them to her room...

Thanks to everyone for their thoughts & prayers this past week! And thanks to the staff at the NH & Hospice for all of your care for Cathy. Words cannot express our gratitude for all everyone is doing.

Note from Barb

Much better day today! I went to see Cathy before work this morning and she was smiles and cleaning up her breakfast tray and they said her night was good. Then I went after work and she led me to the main dinning room for a movie residents were watching, we watched it for about a half hour and she was all smiles, lots of music in it. They said Gayle and hospice had been there before me and of course Brad had been there in the morning. Someone from hospice said to me" Cathy sure is popular around here". I said "She sure is, she's the girl!" Have a safe trip over tomorrow night. Love, Barb

Downturn update

I talked with Brad & Gayle and today is a better day. Brad talked with Hospice while he was there this morning & they discussed a few options to help her out. She is too weak to move around in bed... where she lays down is pretty much where she stays. It is possible that she rolled out of bed yesterday (??) trying to move around. Hospice is hopefully going to get a bed for her that raises & lowers, and also a mat for the floor.

Yesterday we were definately SCARED & very very sad... we were thinking in terms of she only had a few days or a few weeks. Toby & family were ready to drive down from North Dakota for the weekend.

I called Angie (Nurse) this afternoon & she said Cathy is having a better day. She is still having difficulty eating, but nothing worse than before. And quite possibly the improvement could be the medication changes made yesterday.

Thanks for all the thoughts & prayers from everyone! It is such a comforting feeling!!

Downturn....

This morning Cathy was found on the floor... somewhere between her bed & the bathroom. She was too weak to get up on her own. I can't tell you 100% the cause of it... she could have just fallen, but after talking to everyone it sounds like something more... maybe a small stroke or maybe just another part of this awful disease. (her vitals were stable) Gayle said she looked pale, did not have her usual smile, & was very lethargic in the morning. When Brad stopped in she was in bed, he can usually coax her out, but he couldn't this morning. It sounds like as the day went on she began to improve. I talked with the Angie (the Nurse) around lunchtime & she said she was up and Hospice was helping her with lunch. She had called Dr. Loepfe's office & gotten some changes in her meds. (Stopping the Seroquel & I think lowering the dose on another. She is not strong enough now to lift a pillow let alone get angry with someone or race out of the building.) She said the staff was even shocked at how much she had changed over night. I am so Thankful for Angie, even when she is having a crazy busy day she still takes the time to talk to me... just listen sometimes!

It was so hard to not just jump in the van & go see her! I struggled with that all day... but the kids were in school. I talked to Jean on the phone (she is in sunny warm Florida, & we are all her in below zero temps!!) & she is planning a trip back soon. I missed a call from Aunt Charlene, hopefully I will catch her tomorrow. I finally called Barb, I just needed a womans opinion... did we need to get there 'now' or could we wait til this weekend. (I know it is impossible to know... but I knew she would at least understand how I was feeling) She stopped back in to see Cathy after work & called me, she felt it was okay to wait until this weekend. Jackie had stopped in this evening & it sounds like Ryan had as well.

I am hoping that whatever happened to Cath this morning, it will not make it even harder for her to swallow... but realistically I know that is a big possibility. It sounds like Hospice is going to start giving her drops for her excessive drooling while eating.

Cathy has been on what seems to be a 'plateau' since before Thanksgiving. We knew that the time would come when she would take another step down again, that seems to be the way she progresses. For awhile she progresses quickly & then it slows down & then it picks up again. But truly she does not have many steps to go... and for the first time I have felt "scared". Brad & I talked about this today. We have been angry... and sad... and now scared.

It has been almost a year since we moved her into the nursing home... the week of Brad's birthday last year. I am hoping & praying that his birthday this year is not filled with that same kind of sadness.

Marley & Me

First of all I have to apologize to all of you that are wondering, "what happened to the blog?". I thought I would get all computer savvy & try out a new template... only to find out I am NOT computer savvy & lost my old template!!! oops... Hopefully I saved most everything & have tried my best to piece it all back together.

Brad was home this weekend & we took the kids to "Marley & Me". (Warning! If you haven't seen it or read the book... don't read any further!!!!) I had read the book a year ago & already prepared the kids for the ending, in hopes to prevent to much drama afterwards. The movie is a definite for all dog lovers, Brad & I kept looking at each other laughing and smiling. But the end... well Chase was holding my hand, Mia had her head on my shoulder, I was sobbing, & I heard Brad sniffling. The movie brought out so many emotions in us. Mostly because our 1st baby & Cathy's 1st Granddog was our Yellow Lab "Bud". We cried remembering Bud, we cried remembering how Cathy cared for him the last year of his life (the vet recommended we put him down, but Cathy took him home to Wisconsin with her & cared for him! Doggy Hospice Care), & we cried at the 'thought' of loss... & for me... the thought of losing Cathy as well.

Cathy was & is an Animal Lover. She would have Loved this movie.

Below is a picture of Bud & his favorite tire. Plus I am posting my fav picture of Cathy & Misty again... because it makes me smile! :)

I talked to Brad this morning after he had stopped to see his Mom. The past few times she has been in bed when he has stopped... but today she was sitting in the TV room & smiling at him as he walked in! Hospice seems to be getting off to a good start... it will take them awhile to build relationships with her. Hopefully the staff at the NH knows that we appreciate all they do as well. And we can work together as a team to give Cathy the best care possible!

Note from Barb S

Hi everyone, just got back from spending time with your mom this afternoon. This is my only day off this week, so worked out perfect that hospice is on board now so your mom doesn't have to miss the 2:00 activities if we can not be there at that time. When I've gone in the evenings Cathy has been in bed already. I told her I will stop right after work tomorrow. The hospice volunteer was just taking her to the dinning room when I got there, her name is Bonnie. She did great with your mom, although Cathy seemed very tired today and not much for smiles which is unusual. I've known Bonnie for a long time, infact Pete and I did hospice volunteer training at the same time she did in 2003. She was a CNA for homecare at the hospital, but when they lost the homecare contract, she lost her job. I filled her in on some things your mom enjoys and the family. Cathy put a Princess movie in for them and I left. Well, I better go now. Love to you all and take care. Barb

__________________________

I was just thinking I would like to write about how Hospice is going for Cathy, but it is hard to write about it since I am not there. And then I opened up my email to find this note from Barb... THANKS BARB!!! :)

Hospice!!!!!!!!!!

Just a quick note to let you all know that Cathy is finally getting Hospice!!! More details to come... (busy week with the kiddos being back to school!) Gayle just met with them & they are finalizing details. It all started with Gayle pushing for more help at the Nursing Home. We are all happy with the staff that cares for Cathy now... they are just VERY short handed! (like most places I am sure)

Also posting a picture of our visit to Grandma Cathy on our way back from Iowa for Christmas. We took in the movie "Grumpier Old Men" for her, she used to Love watching those movies. Chase pulled a chair up next to Grandma & watched part of the movie with her.