UNBELIEVABLE.......................................... ON IT'S WAY TO FABULOUS!

Once I had a really pretty guest room.

When mom came to live with us last January,

I had to take everything out of what is now

known as "MOM'S ROOM", box it up and move

it into my fabulous guest room.

That took it straight to unbelievable.

The double bed was mom's at River Point,

the care center where she lived from July through October.

The guest room originally had twin beds in it

with custom bedspreads that coordinated with

the custom window treatments.

The twin beds were out and donated

and mom's double bed moved in.

 Thank God for good friends.

Phyllis is not only a good friend,

she can sew like a whirlwind.

When she heard that I didn't want to sell

my bedspreads for a huge loss, 

but had no idea what to do about it,

she said she'd make them fit the double bed.

 Oh, my gosh! Of course she could do that!

She can sew anything. So she comes to the house

with her sewing machine and rotary cutter and starts

measuring, cutting and sewing.

 She had a lot of fabric to work with to make it

fit a double bed. I had no worries. 

She seriously is an amazing seamstress.

 The new bedspread is the start of putting

my guest room back together. 

What you're seeing is the never ending 

"favorite artist" wall. It keeps growing and growing

and will soon be ceiling to floor. Love.

 Okey dokey, here's the "real" guest room.

This is the room in it's current condition

excluding the bed.

All of my thanks go to my sons and

everything I had to box up and move over.

 Such a pretty room.

 Wow. I hope he/they found what he/they were looking for.

 How nice, someone threw my lovelies into a box

for safe keeping.

Dark corners can be scary.

 And, here's the almost complete bed!

The euro pillows are having cases made for them

by Phyllis at her house.

I need new bed and sham pillows and

the bed will be finished.

 And a couple of quilts under the spread and

some serious ironing!

Before my mom got really sick, the three of us were gathered 

around the dining room table working on one of Phyllis' projects.

I got up for some reason and mom got paper and a pen

from Phyllis and wrote this note.

The note asked Phyllis to make sure that I got

the sewing machine that I wanted for Christmas.

She knew. I think she knew that she wouldn't 

be able to take care of that because she'd

be too sick.

There was a window of time that mom went through

where she knew what was going on.

She knew that she was losing it and that it was

only going to get worse.

We had talked about it and I had cried about

it after I listened to her and reassured her that

she was safe. 

She was so scared of the future.

It was moments like that one that still break my heart.

I'm so glad, so very happy, to have the note that

she wrote to Phyllis, but it makes me cry out for her

at the same time.

I want my mom. I miss her so much.

If you're counting, then you

realize that this is my 

third blog post in one week.

I'm trying to make up for lost time.

I am so sorry that I didn't write between

May of last year, until this month.

I'm going to be better - not a post a day -

but, better.

If you've read this post and you have time to

leave a comment, I would love that!

XOXO, Jan

I DON'T KNOW WHAT TO SAY

Profound, huh. My title.
I have spent so many hours trying to think of a name for this post that those hours have turned into days which have turned into weeks. And, I apologize for my tardiness though in some respects I have welcomed the time afforded to me that I did not have to pen this post.

I know that if you're reading this post that you've most likely been reading the others about my mom's dementia, moving to the ranch last January, 24/7 caregiver, moving on to memory care, being with her 8 hours every day.

And then October 2012 rolls in.
What's odd is that I haven't posted since May 2012.
Not really odd because taking care of mom got harder and harder every week as she declined further and further. That left little time for anything else.

But, back to October.
That's when I should have written to you.
That's when my sweet mother passed.
October 12, 2012.
I was there with her, sitting at the head of her bed, when she died.
That day and the day before continue to be very surreal to me.

She was progressing steadily in her dementia decline and then the end of September, she started failing much faster. Then she was dying and after about 1 1/2 days, she was gone.
Not lost.
Just gone.
She has gone on to heaven. I'll be with her again. We'll be able to continue the fun we had here on earth with some differences.
Jesus. God.

That's what I hold on to. Because I don't think anyone ever gets through the death of someone they love as dearly as I love my mom.

One day at a time. One breakdown at a time. One prayer at a time.

God bless all of you, especially my lurkers,
Jan

MY WEEK OF RESPITE ~ THE POWER OF PLACE

I've been full-time caretaker for my mom 

who has vascular dementia.

She's been at the ranch for 4 months.

I was able to take a week off, a week of respite,

because my sweet brother, Russ, flew in to take

over her care while I spent a week on the 

Atlantic shore on Satellite Beach, Florida.

 I happened to read an article in a free

zine called Natural Awakenings that

I know God put in my path to give me the

words that describe perfectly what being at

the ocean means to me.

.....The qualities that make a place special to us

are highly personal, and they often help us to define

who we are. Whether the setting is a lake house,

a mountain lodge, a seashore cottage {ocean condo} or a

backyard at twilight, our sensory connections to these

special places shape us in deep and lasting ways.....

 This relationship to place is one that we carry 

within ourselves for a lifetime.

 Iona Dreaming: The Healing Power of Place, 

is Clare Cooper Marcus' journal of her six months 

on the Scottish island of Iona.

 "I feel pure in this place. It is as if there was no separation

between my living, breathing, perceiving body and my soul-nature.

No posturing, no pretending. I am who I am -- no more,

no less. As my breathing slows and I relax, I experience the

sound of the sea passing through me -- not me hearing the sea,

not me and the sea -- just the sound"

 The ocean has always been the place where I feel God

the deepest. This week of respite was necessary for

my mental being and soul.

I rented my dear friend, Vicki Boster's, condo and it felt

like I could reach out the window and touch the surf.

The week was shared with my best friend from college

and my cousin - each being with me for half a week.

Their presence allowed me to talk about what I have been

through these last four months. It was immensely healing.

I crave the ocean every day.

I would love to experience a few weeks 

on the Scottish island of Iona like 

Clare Cooper Marcus was allowed to do.

Traveling abroad...to an island in Scotland...

writing about it gives me chills.

I don't think I'll be adding that to my bucket list,

however, because I don't see any way it would 

happen, but simply thinking about it makes me grin.

(And, God can make it happen, right??)

This past week at the ocean was cleansing, refreshing

and, as I said earlier, healing. I hope that I can

go to an ocean again in the next couple of months.

Any ocean -- God speaks to me through any of them.

I am aware that I am not the only daughter that has or has had

full care of a parent with dementia......or cancer.......or

parkinsons.....any chronic disease. But, we all have our

own challenges that we must deal with while caring for our 

parent(s) and my challenge is physical. So, I need

to do what will keep me the healthiest so that I can 

care for my sweet mother properly.

Give me the ocean.

Thank you for following my blog and for your continued support.

My mother is so important to me and all of my siblings.

Having her loose the best of her is incredibly hard to witness.

Without God's support I don't know how I could do it.

I give him all the glory.

Blessings,  Jan

OH, GOD, OH, GOD, OH, GOD

Frank and I just lifted mom back into bed. What is it, 12:45 A.M.??
She had slipped off of the bed after going to the bathroom and sitting down on the bed to crawl back in and go back to sleep.
I have a monitor next to my bed on my nightstand so that I can hear if she needs me in the night. I barely heard her say my name. So much so that I had to stop reading and really listen to make sure I did hear her say my name.
She said it again and I knew she needed me.
I got that. "oh, God, no" feeling when I saw her sitting on the floor next to her bed.


She said the bed was slippery and she slipped off.
When I questioned that she said that the floor was slippery. She was barefoot and didn't have her slip on shoes on her feet so it may have seemed slippery.


But then I realized what had happened and as I type this I am looking at the screen through a blur of tears that threaten to slide over the edge of the lower lids of my eyes. The tears that have been sliding all over my face, mixing with the 'tears' coming out of my nose' until I got out of bed and got some tissues and sat down in front of my computer.


What had happened wasn't anything new..... 
My mom's walker was at the foot of her bed.
You see, she doesn't think she needs to use it, even when falling is getting to be a weekly thing around here.
But, really, is it her fault? She doesn't remember. Whose to say that she didn't just forget to use it all the way to the side of the bed so she wouldn't slip on that slippery bed or because of the slippery floor? Whose to say?
Oh, my poor mom. She wasn't hurt in this slide down to yet another dark place.
She simply sat there and whimpered and broke my heart all at the same time.


I got Frank up and we got her in bed and I felt so useless, so inadequate, not only as her caregiver, but as her daughter. I can't help it. 
It breaks my heart to hear my mom moan with defeat. To be back in the place she visits too often where she has no hope of her life getting better. 


As time goes on, week by week and sometimes day by day, I see the decline in her memory as I see the progression of her confusion. I want to scream that it's not fair, but I know that life's not fair. 


If I didn't have the arms of Jesus to crawl into at night after I turned off my Kindle and turned off my light, I think I would have lost my mind by now. My God. He is my savior in so many ways. And, He's the One I call out to in my mind during the day when things are gloomy, when she will only watch HGTV (I keep reminding myself that I cannot jump through the t.v. and smack that woman, that wife, who is whining because she doesn't like the granite counter tops in the kitchen of the house she's being shown. Really? Would she like my laminate ones better?), mom's being mean, hiding her food in her napkin, keeps telling me that I'm too happy, continuously looks through magazines for just the right Christmas gifts for all of us. 


I've stopped crying and I think if I read for a bit more I'll be able to go to sleep.
Oh, wait. Maybe not.
My nose is impacted. 


I know that getting my feelings down on paper has helped me. My blog is my diary and there are just times that you have to write in your diary. I'm just very thankful this wasn't a Page 2 post because it could have easily been one.


If you read this, thanks for taking the time.
I either have a lot of lurkers or only about six people that read me any more.
Now I'm crying again. . . . . .jk


Night and God bless!, J.T.


P.S. Mom has been put on an appetite enhancer and, boy howdy, has it made a difference!
She is eating wonderfully now! Yea!!

THE DAY YOU SEE I'M GETTING OLD

Letter from a Mother to a Daughter: 

"My dear girl, the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through. If when we talk, I repeat the same thing a thousand times, don’t interrupt to say: “You said the same thing a minute ago”... Just listen, please. Try to remember the times when you were little and I would read the same story night after night until you would fall asleep. 

When I don’t want to take a bath, don’t be mad and don’t embarrass me. Remember when I had to run after you making excuses and trying to get you to take a shower when you were just a girl? When you see how ignorant I am when it comes to new technology, give me the time to learn and don’t look at me that way... remember, honey, I patiently taught you how to do many things like eating appropriately, getting dressed, combing your hair and dealing with life’s issues every day..... 

the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through. If I occasionally lose track of what we’re talking about, give me the time to remember, and if I can’t, don’t be nervous, impatient or arrogant. Just know in your heart that the most important thing for me is to be with you. 

And when my old, tired legs don’t let me move as quickly as before, give me your hand the same way that I offered mine to you when you first walked. When those days come, don’t feel sad... just be with me, and understand me while I get to the end of my life with love. I’ll cherish and thank you for the gift of time and joy we shared. With a big smile and the huge love I’ve always had for you, I just want to say, I love you... my darling daughter. "

This 'story' was posted on Facebook by a friend, Kathy Maximo, and my friend, Julie Grakowsky, made me aware of it. I read it and cried as I came to the realization that this story is my story. Even with mom's dementia getting in the way, or maybe because of it, I felt I was living this mother and daughter's life.

I'm sure this was written at the time of Mother's Day for a reason. It works beautifully, but the story works perfectly for me and my precious mother.

Blessings, Jan

I TOLD FRANK I HAD FINALLY FIGURED IT OUT

The Tank and I were laying in bed the other night talking

about this and that.

One of the things I shared with him was that I had

 finally figured out Oprah's question that hadn't been

  weighing on my mind though I know

 she'd be so proud to know that I had finally figured it out.

I'm a stress eater.

But, I get ahead of myself...

Y'all know that mom moved to the ranch in the middle

of January this year for me to take care of her.

She moved here from a memory center

in Portage, Michigan, where she was residing because

she had onset vascular dementia.

So, we make it to the ranch a couple of weeks before

this............

drove up.

Oh, heavens, that was one big moving van. 

Before I became concerned as to how much room mom's

things were taking up inside the van, I derived a great

sense of satisfaction knowing that whomever was

driving by the ranch as this monster drove up the lane,

would be wondering why we were moving, where we

were moving, had we run out of money? goats?

Center Point is like so many other small towns in that respect.

The sight of this van driving up the lane would give

the old men that drink coffee at the local mini mart

great fodder. Still makes me smile when I think about it.

Here are some shots of mom's things.

Not all of them be any stretch, but, enough that you can

get an idea of what those men pulled out of that moving van.

Oh, the boxes.

The entire mess was supposed to fit into mom's

room - a really decent sized bedroom with a 

sitting area and attached bath. Lots of storage.

But, please! A whole house into a suite?

And, of course, she wanted to start going through

the boxes one...at...a...time, handling, touching,

caressing every...single...item...in...each...box.

This picture is of mom shortly after she arrived.

I remember when I looked at this photo that it struck

me as so odd -- my mom was "old", you know, 

a senior. I had never seen it in her before and 

maybe that's because she was never "sick" before, 

I don't know. But, though she looks different to me here, 

she's still beautiful and 85 this summer.

Mom has to use a walker to get around.

She is a bit frail and her sense of balance is

somewhat off. This is the safest way for her

to get around -- even when re-introducing herself

to the goats. 

So, mom has dementia, she's moved everything

she's ever owned to the ranch and

on top of that, after she had been here for a few 

weeks, she fell and sustained three hairline fractures

in these two bones that attach to the bottom of your

hips. Yeah.

Pain, such pain sitting, standing, sitting.

Nothing that can be done (in the way of surgery) 

and thank goodness she is almost healed and the

pain is lessening weekly because she has really been hurting.

However, even in the middle of hurting she manages to

dig out her sense of humor...the picture above is mom in

a sweat suit, hood up, topped by her heavy robe 

(and an asked for pathetic look) because she 

was/is/is always cold. Someone needs to tell her she's 

in south Texas now, not Michigan.

This picture was taken this Easter, just a couple of weeks ago.

We had just been to church to witness Blake, Clay and

their daddy's baptism (it was so cool).

Blake and Clay wanted a picture taken with Grammy once

we got home. Oh, and Sophie, too.

These are the moments I like to remember.

The ones I must remember to get through the

other moments that fill my days.

I remember growing up, into my adult years, always

fearful that one of my parents would get cancer and die.

The word "cancer" had always scared me and I could

picture having to live through one of my parents getting

sick with "the C word".

Never, however, did I or have I thought that one of my parents 

would develop dementia.

It's a condition that does no apparent 'physical' harm to the person

suffering from it because they don't know that there's

anything wrong. It's the children and all of those who love

my mom that have been the greatest affected.

She has moments with me where she will question "why"

in reference to her confusion and memory loss,

but, except for those moments, 

it's those of us that love her that are feeling

the most pain. And, I'm sure there are many of you

that can relate to that.

And to those of you that are the care givers or have been

the care giver, I know what you're feeling.

I know your frustration, your feelings of inadequacy,

your fear, your exhaustion, the pounds you've added

or the pounds you've lost, those moments of delight that

you share with your parent. I know all of it

and I pray for you as I hope you are praying for me

and all of the caregivers.

AN ALZHEIMER'S POEM

Do not ask me to remember

Don't try to make me understand

Let me rest and know you're with me

Kiss my cheek and hold my hand.

I'm confused beyond your concept

I am sad and sick and lost

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me

Do not scold or curse or cry

I can't help the way I'm acting

Can't be different though I try.

Just remember that I need you

That the best of me is gone

Please don't fail to stand beside me

Love me until my life is done.

Amen.

YOU NEVER KNOW WHEN GOD IS GOING TO PULL THE RUG OUT FROM UNDER YOU

but, when He does, you just go with it using prayer, His strength and deep breaths (you, not God).

and it happened to me a couple of weeks ago.

i'm still reeling but i'm sure it will all settle down soon.

ah, heck, who am i kidding?

it won't settle down until my mother passes or gets to the point that she needs to return to a memory care facility.

But, it's okay. She's my mom.

long story short, my mom has early stage dementia.

i have four amazing brothers and sisters who have each taken a part of her care together up until the time that i arrived about 2 weeks ago. my mom lived in michigan. kalamazoo, specifically. she was diagnosed in this psychiatric hospital for geriatrics (love that my mom was in a psych hospital. special).

she was then moved to a memory care facility which was absolutely beautiful. had her own suite - it was huge - and an amazing staff. 

don't get the wrong idea - all of that beauty and good care comes at a price. 

You'd think if they were going to charge what they do, they'd lose the funeral drapes.

it was decided that she didn't need that much attention and after she had told three of my siblings that she wanted to live on the ranch with jan and the puppies (we have four rescue dogs), i got the phone call.

what am i supposed to say??

i said "yes", of course.

according to her O.T., she functions at the age of a 3 year old and needs constant supervision.

gre-a-a-a-a-a-a-t-t-t-t.

so, i drove up, spent two weeks, helped pack up everything she owns that she wanted to move to Texas - enough to fill a moving van partway - loaded her, her dog and her walker, etc. into the car and took off for Texas.

we're home. she's settling in.

keeps telling me she's taking a bus to kalamazoo for Christmas.

my mother on a bus?

horrors.

glad she doesn't know what she's saying. she'd freak.

here's a poem that i want you to read, especially if you are taking care of an early onset dementia patient.

it's an amazing read:

AN ALZHEIMER'S POEM

Do not ask me to remember

Don't try to make me understand

Let me rest and know you're with me

Kiss my cheek and hold my hand.

I'm confused beyond your concept

I am sad and sick and lost

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me

Do not scold or curse or cry

I can't help the way I'm acting

Can't be different though I try.

Just remember that I need you

That the best of me is gone

Please don't fail to stand beside me

Love me until my life is done.

Amen.

BELIEVE IN MIRACLES? YOU SHOULD.

I have been waiting to write this post.

Waiting to know for sure

because it's so new.

It's just day's new.

But, I have some friends that

deserve not to have to wait

a minute longer to hear 

what God has orchestrated.

Friends that have been praying for us, supporting us,

loving us, caring for us.

Through all of my tears, 

uncontrollable sobbing,

despair,

fear and hard prayer,

God was always there.

And I knew that in my heart.

I have always known that God was there

supporting me even more 

than even my dearest friends.

That didn't mean that I couldn't be sad.

He doesn't expect us to go through life

smiling all of the time.

Just believing all of the time.

He was also working in

other's lives. 

(He's the ultimate multi-tasker).

He has been working in

the people's lives who were

working with my mom.

Doctors, nurses, caregivers,

my brothers and sisters.

He has blessed my mom with

the best care and the most wonderful

caregivers and children.

All working for what's best for mom.

Mom was settled in a most wonderful

memory care facility for dementia patients.

She has had doctors that changed her meds

for the better, and

children that have given up time

and money to protect mom and do what's

best for her.

I can't press that point enough.

Because, you see, a miracle has happened.

Remember that this all started with mom falling

asleep at the wheel because she hadn't slept

for seven days? 

That inability to sleep continued for two months.

She would sleep for a couple of hours

now and then, but never fully slept.

Her doctor was changed,

her meds were changed 

several times.

There's so much information that

I'm just going to leave it at that.

When mom was settled in the memory care

facility, her life took a dramatic turn.

She started sleeping.

Her sleep meds were changed by

a new doctor and the meds

worked. 

They worked.

They worked.

They worked.

Mom has slept every night since

December 6th.

Sleep deprivation postures 

dementia.

She has grown stronger

and more like my mom by the day.

She still has moments of confusion

(If you know me, 

you're thinking that it's genetic),

but SHE IS BACK.

PRAISE GOD.

PRAISE GOD.

PRAISE GOD.

It is her desire to live at the ranch 

with Frank, me and our "doggies".

So, I'm on my way to Kalamazoo 

to see my mom and

to bring her home.

Annette is flying up to drive

back with me.

When we made those plans

little did we know that we'd

be bringing my mom and her Sophie

back with us.

YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thank you for your prayers, support, cards to mom 
and for your love,

Jan

"here i come, Sister"