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 'baby' 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.
It sounded so far away that I thought she must be in the bathroom so you can imagine my surprise, my "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 (because she's never "slipped off" before) she said that the floor was slippery. I told her that, really, the floor wasn't slippery but that she was barefoot and didn't have her slip on shoes on her feet so it may have seemed slippery.
I refrained from asking her why she didn't have her shoes on. (You live longer if you don't question a lot of actions. *stress*, ya know)


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 toilet paper (you try and go to the grocery store when you're taking care of a dementia patient. No Kleenex here at the moment).
What had happened was the age old story here these days. 
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 has dementia. 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 her caregiver, but as her daughter. I know I'm doing the best I can and that falls and failing eating habits are the two biggest concerns with patients with dementia. But, 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, 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 countertops 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 (right, mom), keeps telling me that I'm too happy, can't read a book because she can't hold on to her concentration long enough to have it make sense, looks through magazines for just the right Christmas gifts for all of us. (I'm really going to push for cash and let my siblings have all of the special gifts she's finding. *crack myself up every time I think about that*)


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.

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.

AH, YES, 2011...........

My cousin, Melinda, forwarded me the email below. 
I have never made an email into a blog post,
but this was just too good to pass up.


My 2012 gift to you................heehee

As we prepare to depart the year 2011 and progress into the critical year 2012, I want to thank all of you for your educational e-mails over the past year. I am totally screwed up now and have little chance of recovery. 

I no longer open a bathroom door without using a paper towel, or have the waitress put lemon slices in my ice water without worrying about the bacteria on the lemon peel.
                                              
I can't use the remote in a hotel room because I don't know what the last person was doing while flipping through the adult movie channels.

I can't sit down on the hotel bedspread because I can only imagine what has happened on it since it was last washed.                                                           

I have trouble shaking hands with someone who has been driving because the number one pastime while driving alone is picking ones nose.

Eating a little snack sends me on a guilt trip because I can only imagine how many gallons of trans fats I have consumed over the years.

I cant touch any woman's purse for fear she has placed it on the floor of a public bathroom.

I MUST SEND MY SPECIAL THANKS to whoever sent me the one about rat poop in the glue on envelopes because I now have to use a wet sponge with every envelope that needs sealing.

ALSO, now I have to scrub the top of every can I open for the same reason.

I no longer worry about my soul because I have 363,214 angels looking out for me, and St Theresa's Novena has granted my every wish.

I can't have a drink in a bar because I'll wake up in a bathtub full of ice with my kidneys gone.

I can't eat at KFC because their chickens are actually horrible mutant freaks with no eyes, feet or feathers.

I can't use cancer-causing deodorants even though I smell like a water buffalo on a hot day.

THANKS TO YOU I have learned that my prayers only get answered if I forward an e-mail to seven of my friends and make a wish within five minutes.

BECAUSE OF YOUR CONCERN, I no longer drink Coca Cola because it can remove toilet stains.

I no longer buy gas without taking someone along to watch the car so a serial killer doesn't crawl in my back seat when I'm filling up.

I no longer drink Pepsi or Fanta since the people who make these products are atheists who refuse to put "Under God" on their cans.

I no longer use Cling Wrap in the microwave because it causes seven different types of cancer.

AND THANKS FOR LETTING ME KNOW I can't boil a cup of water in the microwave anymore because it will blow up in my face. Disfiguring me for life.

I no longer go to the movies because I could be pricked with a needle infected with AIDS when I sit down.

I no longer go to shopping malls because someone will drug me with a perfume sample and rob me.

I no longer receive packages from UPS or Fed Ex since they are actually Al Qaeda agents in disguise.

And I no longer answer the phone because someone will ask me to dial a number for which I will get a phone bill with calls to Jamaica , Uganda , Singapore , and Uzbekistan .

I no longer buy cookies from Neiman-Marcus since I now have their recipe.

THANKS TO YOU I can't use anyone's toilet but mine because a big black snake could be lurking under the seat and cause me instant death when it bites my butt.

AND THANKS TO YOUR GREAT ADVICE I can't ever pick up a .25 cent coin dropped in the parking lot because it probably was placed there by a sex molester waiting to grab me as I bend over.

I no longer drive my car because buying gas from some companies supports Al Qaeda, and buying gas from all the others supports South American dictators.

I can't do any gardening because I'm afraid I'll get bitten by the Violin Spider and my hand will fall off.

If you don't send this e-mail to at least 144,000 people in the next 70 minutes, a large dove with diarrhea will land on your head at 5:00 p.m tomorrow afternoon, and the fleas from 120 camels will infest your back, causing you to grow a hairy hump. I know this will occur because it actually happened to a friend of my next door neighbor's ex-mother-in-law's second husband's cousin's best friend's beautician . . . 

Was that fun?? 
Bet'cha grinned.......heehee


LOVE YA!! Jan

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"

GOD HELP ME HELP MY MOM

 This is an email I sent out yesterday to my children, cousins, dad & U., aunt and uncle, and very close friends.

   After I read it again this afternoon I realized that it contained some information that I didn't put in my blog           post yesterday so I thought I would post it for you to read.

   I'm also going to include some pictures of my mother so you can see how dear she is/was.

Now I'm going to tell you where we are now.

   This may sound somewhat like the first "mom" post, but it will give you some more information. 

Mom has been released from "the clinic" (i have no idea what it's called) where they were able to find the right medication for her to allow her to go to sleep at night.

After a couple of nights of sleep it's amazing the difference in her "attitude".

So, that seems to be working for the time being.

 we do love to shop!! 

this shopping trip was in downtown kalamazoo. so fun.

Mom has been diagnosed with vascular dementia as a result of the fall she took about three years ago. 

She has been released from the clinic that determined her dementia and her medication.

She is now residing in a facility called Claire Bridge in Kazoo. It's independent living (I think I'm the only one that wonders if this is what mom needs. we'll see).

The facility is gorgeous. If you would like to send her a card, not that she'll understand - she may think you're her sister - I know personally how wonderful it is to get "fun" mail. Let me know if you want to send a card & I'll give you her address. You'd be such a blessing to her and to me.

 Mom & Sophie; Sophie LOVED the ranch. 

Every year she spent three months with us and we had so much fun!

This is a picture of mom holding a newborn goat which Sophie is checking out.

She has an "apartment", kinda like an efficiency apartment. Her bedroom is at one end and a sitting/TV area is at the other end. And, of course, there's a BR.

We, her kids, have taken all possible measures to make sure she will be safe in her new setting in addition to what the facility provides.

My sisters and brothers have had some of her furniture moved like her couch, end table, bedding, some of her amazing ccs she has on her walls, etc.

Her first night was last night and even though she is given a 24 hour private nurse for her first 24 hours, Eileen went ahead and spent the night because she

was restless and confused. (the word "confused" never hurt my heart before now)

 Mom is on the right. This is her family when she was in high school (I think).

Today's report is that she is "pissy" (a sibling's word, not mine) which basically means that she's being mean and uncooperative because she didn't 

get a good night's sleep. She's very upset that no one will take her home to her mother's.

This is our eldest, Craig, and his sweet Grammy, my mom.

Needless to say, this has been a roller coaster for all of us. She only started showing symptoms a month ago.

The doctor said that is how vascular dementia postures.

   I haven't been there yet; you know I'm going the first of the year, but I think she's almost full blown from what I've heard. I could be wrong (oh, so doubtful). 

Russ has been able to fly up several times as his flight from Florida is 200.00 round trip.

I've been stuck in Texas because round trip from here is 800.00.

So, we've all had our own type of Hell handling this.

   But, though we all have done what we can, I must give a shout out for my little brother, Russ (he'll love that!). He has really made me proud the way he has stepped up and taken over many of the aspects involved in this process.  

 My mom when she was younger. 

She was a knockout (though the haircut isn't shown' that too much).

If you've never experienced having a parent w/ dementia, I sincerely hope you never do.

It's horrible. It's so horrible.

When I drive up the first of the year I'm going to see someone other than my mom.

This woman is going to be confused, she probably won't know who I am, and there's a good chance I'll witness my gentle mom being evil.

God help me to help her.

 Clayman holding Sophie, making a silly face (that's new)

with his Grammy.

You can't possibly understand the dread I have as I face this trip north.

(I'll be there from the 3rd - 17th *approx.*)

I'll keep the updates coming if there's any change though I don't feel there will be.

I will send you pictures of her new home so you can look for them.

My SIL, Eileen, helping mom separate ccs thread.

Mom's love for so many years has been doing very complicated ccs

projects. I'm going to miss seeing her work on her pieces.

Pray for Junie/SAJ/Grammy/Aunt/mom.

And, please pray for her kids.

The most eloquent prayers for me because I'm her favorite. 

Be sure and let me know if you want her address. Blessings.

Love, Jan

Mom as a little girl.

pls. respect my copyright