Memory Care and Still Making Memories

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We are grateful that Chanelle arranged everything to get Grandma M moved closer to us.

Grandma M is getting settled in her new place, much thanks to Chanelle for easing her transition.

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Enjoy fresh air at Grandma M’s new place.
It’s still not easy to visit her.

Oh, she does live close now,
that part IS easy.

However, many (most) of her family and friends do not come visit.
They love her, and care about how she is doing.
But on a serious note,
you never quite know what to expect when a loved one struggles with severe dementia.
Even to admit the reality of what that is, is difficult.  It’s sad.
And at times, it’s baffling.

I think the lack of visitors she receives has many factors:

1.  It’s scary.  Scary to be met face to face with the reality at hand.
She has dementia.  Her brain is dying, and it’s obvious.
She often doesn’t make sense, gets confused,
and struggles with basic life skills like how to use ketchup with french fries.

The Positive Note:
Although she is often scared (who wouldn’t be),
and can be grumpy in daily life…
Oh the JOY she has when she gets visitors!
because, let’s face it… her brain might be shutting down,
but she is still a person, a person with feelings and a heart.

2.  People are busy. 
This part is different for everyone.  Each person that has been in Grandma M’s life gets to decide for themselves if they want to visit her, and how often.  Chanelle, while still living here, visits mom often, daily even.  My dear husband, because he works full time plus some, and still has large family at home, will often do weekly visits with his mom.  The kids and I seem to be on a every other week visit, not for any particular reason cept that is when it seems to work for us.  I am hoping in the summer we can make that into weekly visits.

The Positive Note:  If you have a loved one who struggles with dementia or Alzheimer’s, you get to decide how much time to invest in that person’s life.  Time is for you and against you.  For you, because the person with dementia doesn’t really have a concept of time; against you because we never really know how much time they have left to be cognitive.    Visit when you can, but sooner is always better than later.

3.  What will we talk about or do?
Keep it simple.   I call it surface talk; the weather, what was for breakfast, look at the beautiful flowers, and most importantly, smile.  It will help ease the initial awkwardness.
Things you can do; enjoy a cup of coffee together, go for a walk, look at pictures (that you may want to bring).

The Positive Note:  Just being there is enough, so don’t put any expectation on the visit.

Her condition is heartbreaking but not hopeless.
Grandma M may be different, sometimes barely the person she use to be;
however, she is still a living breathing soul who deserves love and compassion.
She may not remember the things we are doing for her,
but we are still making memories, for ourselves as well as for our kids.
She is still here, can still talk, can still laugh, and can still hug…
what’s more precious than that in life?

playing at Grandma M's memory care facility.
playing at Grandma M’s memory care facility.

 

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The Detriments of Dementia

This is a tough topic.

Most of my readers here expect the usual school, sports, or social updates that I share…
and yes, this most definitely covers all things family, but there is also the tough stuff.

Many folks reading this will remember me sharing our journey with Grandma M; others are newer readers and aren’t aware.  Some of you are family, or friends, and know a little more of what’s going (or not going) on.  A past review can be found HERE.

Detriment 1:  Care confusion.

Grandma M is in a memory care facility.  It is not where I wanted her.  However, she did not want to be with us.  Thus this is, at the time, our only option.  Letting go was a transition; being aware of the lack of care in these facilities is stagnant.  Oh, they sort of do the necessity like feed and clothe, but I am talking empathy and nurturing the patients.  The patients, like my mother-in-law, are people.  They have someone who cares about them, they have lived life, they matter.  To have Mom with one earring on, no shower, disheveled hair, 2 coats on, and have no glasses on is careless.  Sure, these patients are lost, confused, and some times agitated, but they deserve dignity.

Detriment 2:  Relational reality

Now that Grandma M is in this memory care facility, I find fault in myself.  You see, Fred swings by to see his mom occasionally.  Chanelle has invested once a month visits with her while living in California.  Now that Chanelle is living with us, she goes 2-4 times a week to visit her mom.  It is an hour (without traffic) one way.  Me?  I do not go see her… have not up to this point.  Oh, I do see her, whether I go with Fred and the kids, or she comes to our house every few months for a visit; however, I personally, on my own don’t go see her.  I love her.  and I’m pretty convinced she loves me.  She just hasn’t always liked me.  The harsh words of the past make me hesitant to visit the moods of todayPraying through the process.

Detriment 3:  Friends and Family fall away

Dementia is tough stuff.  When we had Grandma M in our care, it wasn’t common for relatives to check in to see how things were going.  Dailiness was difficult. I understand the challenge of finding time from our own lives to invest time in a relative far away.  In today’s social media, we have found excellent ways to close that gap; e-mail, facebook, texts, phone calls.  Yet with dementia, the affected relative cannot function this way.  This is the relative that would take trips to see other folks back in the day, yet since she has been admitted to this facility, has had very little to no visitors.  Obviously, I understand if it is a difficult choice to visit her; trust me, it’s not easy seeing someone you love no longer the capacity of the person they once were.  It’s downright heartbreaking.  The bigger picture is to take a look around at those who surround us.   Look at how busy we are.  Look at how much we do, how many we help… then stop.  pause.  Who will be around for you to the end?  When you have nothing left to give except to just exist, who will be along side you?  Who will reassure your fears, and comfort your anxieties?  For Grandma M, this is Chanelle.  Who will make you laugh when there is not much joy left?  For Grandma M this is Fred.   Who will make you feel loved?  Will you be forgotten?

For our family, dementia came in and devoured our mom in just a quick few years AND at quite a young age.  It’s frightening really.  Never did we expect this journey to fall in our laps at such an early stage of life, but it is here, and we are traveling it best as we can.  It’s a lonely journey.  Wondering if the choices you are making in the behalf of your loved one is the right decisions…

Update on Grandma M-

Michele Feb 2013

We are not happy with where she is residing.  Personally, I feel like she gets overlooked there.  In reality, it is too big a facility and too far away.   She does have some relatives that are near her, but visits are minimal (much like mine), so we are looking for a closer residence.  A place where we could swing by on a whim during our own dailiness.

Grandma M did spend some time with us last week (wed thru sun), and we all had a lovely week end with her.  She enjoyed walks with Chanelle, dinner times with our family, and a movie night with just us ladies.  She watched the kids play, and laughed at their silliness.  Makes all our hearts ache, wishing we could provide enough for her here on a permanent basis.  Chanelle does a lovely job giving Grandma M the gentle care she needs, such as help with the shower, brushing teeth, and doing her hair for her, guiding her to eat breakfast.   The challenge in nurturing her is that there cannot be any gaps in care management.   She needs prompts and guidance and redirection as needed.  We cannot securely provide that with Fred working, and Chanelle working part time, and myself schooling the 4 kids plus watching little Peanut every day.  So, for now, our prayer is that we can get her into a memory care facility close to home, and that not only will we have more opportunity for her to visit with us, but that our family will establish relationships where she will be also.

Do not cast me off in the time of old age; Do not forsake me when my strength fails.  Psalm 71:9

L.I.F.E. Academy~ October goals

Autumn is under way;
warm days,
cool nights,
treasures unfold.

We are establishing our new normal this month.  Grandma M’s care established our days for quite some time.  School, although outlined, was often worked around her needs.  All the kids did great with being a part of it all.  Katie often kept an eye on the kitchen and helped encouraged Grandma as needed.  TJ was always available to get the TV set up for her.  Andrew would let me know if she was headed out on a walk (around the block, thankfully).  Bryson began to gain an understanding of her oddities and developed a compassion for her.

All things that created character in my children, and myself.

Then there were those things that got overlooked. 

Can I admit that I don’t know how often my children have brushed their teeth in the past year?

or that chores were done mostly by me because it was just easier to *get it done* than to establish work standards in my children?

or that preschool hasn’t been up to a quality standard (ie my standard) for quite some time?

or that I didn’t get quality sleep for months because I held those late night quiet hours a little too preciously?

or that I probably spent far too much time on the computer as an escape; a sanity of sorts.

Goals are set.

We are approaching an attitude of excellence.

To excel… to do or be better than we thought we could be.
To surpass… to give a quality performance in all we do.
To exceed…  to go past expectation.
To transcend… to rise above, and go beyond.

This applies to all that we do;
school work
chores
volunteering
our attitudes
relationships
our walk with Christ

Getting back to the basics… again.

Our schedule will not look much different, but we will be settling into our RC (Robinson Curriculum) routine.
The older kids will be “self-propelled“; that is…
to expend energy to learn independently to a mastery level“.
~Joanne Calderwood, The Self-Propelled Advantage.

October will be spent implementing our new found approach to excellence…
and attitude will be everything.

Fall~ a season of changes

 

 

Crisp air, colorful leaves, more spiders…

Ah yes, the beauty of Autumn.

I use to not particularly care for fall.

It meant change, so I would glue my eyes towards what was to be…

while I was young I learned to be prepared, to over plan,
to compulsively focus on the destination of the next journey…

God, in His grace, has spent years working on me,
to be still,
to know He is God,
to trust that He will do a good work in me.

I’ve spent the last year embracing the journey,
following this path God has me on,
going around bends, through the bumps,

as God paves the way for me and my family.

To grow character, to develop patience,
to live compassion out loud, to trust in Him.

So, as things are changing around here,
I must remember to go slow and grasp the small still moments 
that seem to pass me by…

Grandma M

After some diligent work on the part of both her son and her daughter,
after recognizing that she requires more care than we can properly provide,
and wanting to respect that she just was not happy here,
we have found a place for her.

A memory care facility.

I must admit this comes with mixed emotions.
Excited to be released from such a high-maintenance responsibility,
but sad at the reality of the circumstance.

Sad at the realness of her diagnosis,
sad that my care wasn’t enough,
sad to not feel like we made a difference while we had a chance.

So as I feel a sense of relief in some ways,
our love and care for Grandma M continues,
just now in a different way.

Nick

Starting a new job on Monday.
A real job.
A really hard job, physically.

Praying for strength,
physically as well as spiritually.

Again, mixed emotions.

Excited to see him become the man he is,
and preparing myself that he will be moving out,
probably within this next year.

Joe

He has finished his apprenticeship program!  woot woot!
Passed the tests, accomplished all the hours needed,
He is officially a sprinkler-fitter journeyman like his dad.

A hard-working man, planning to get married next summer,
sharing God’s love and his knowledge of the Bible with others,
building relationships with his siblings, and preparing for the future,
all at the same time.   A great multi-tasker; like his dad.  =)

Andrew

Just registered him with the school district as a homeschooler.  I had much to ponder, unlike with the other children.  I have a special child who requires a different approach.  I feel comfortable with that approach, yet on government required paperwork, it becomes interesting.  So… I’ve opted for Andrew to officially be a first grader.  It is where his learning level is, and it give us time to decide on our ‘testing’ approach.

As of now, I am working on a PDP, a privately developed plan, to provide to the state (if I were asked).  In our state, homeschool kids are required to take state tests in 3rd, 5th, 8th, & 10th grade to be available to provide to the state (if asked).  The PDP takes place of the standardized testing.  So, just as I have my kids test every year (for my own interest), I will develop a PDP each year for Andrew (for my own interest).

Home School

As much as I am thrilled that school is going well, I still ponder much.

Homeschool is such a beautiful thing;
learning, embracing, growing, preparing.
I love it all.
I truly believe there is not really a ‘wrong’ way to homeschool,
‘cept to do nothing at all.
Learning becomes a lifestyle, so living becomes learning.

I love the Robinson Curriculum because it promotes self-learning;
to think for yourself,
to be motivated by your own efforts,
to be problem solvers,
to become responsible and reliable.

Regardless of what my kids what to be when they grow up,
these are the character traits that I want my kids to have.

So I continue to ponder our days here…
and will be tweaking a few things in the next few weeks.

How is your changing season going?

A 19 Day Vacation for All

Also known as respite care.

Grandma M was thrilled to go see her daughter in California.  There is no place she would rather be!  The great part about this is that Chanelle is a most fabulous host.  We knew Grandma M would love ANYTHING her daughter would put on the schedule; shopping, lunch, walking, beauty salon, swimming, dinners, etc.  There was a sense of relief knowing that she was well taking care of.

As for us left back at home, this was a time to do activities as a family that we really cannot do while Grandma M is here.

Mainly…

Go camping!

Go visit my parents!

Including going on our old nature trail with a 2nd cousin.  It is beautiful this time of year!

Go to a family reunion!

to get the opportunity to meet more 2nd cousins.

For me to visit a long lost high school friend!

who not only bought me lunch, but also gave me these beautiful roses!

Get school started, routines going, and prepare expectations.

We also just got ‘to be’.

We made pet rocks.

And were able to visit good friends.

To enjoy going swimming at a friend’s house.

To simply lay on my bed to rest for 10 min. without knowing I am watched.

To not keep inventory of toilet paper, chocolate chips, or sodas.

To have the kids eat at the table to avoid crumbs in the living room.
yes, this sounds weird I am sure, but when a person subtly lurks near your face while eating, said child will prefer to choose somewhere else to eat.

To come and go when we’d like, how we’d like, with whom we’d like…
this all made life feel somewhat normal.

Not complaining mind you; just reminiscing on what use to be our normal.

Swimming, hikes, friends, nature walks, etc…

It is what it is, our circumstance in life, our new normal now.

Everything has to be observed, all need to be encouraged, and everyone wants things to be different.

And we find hope in Christ, and we are faithful to trust in Him,

while we simply love one another, just as Christ Jesus first loved us!

Walking alongside Dementia

One must embrace grace to face this journey;

and once grace is grasped, mercy unfolds.

Up until now, I have been very discreet about sharing the difficulties of this challenge in our lives.  It is a sensitive topic.  Shame and embarrassment become the hidden secret, but if it lurks too long in the darkness, turmoil takes over.  I feel it is time to shed light upon the circumstance.   I have prayed about if it is appropriate to share this troublesome journey on a public forum such as this blog.  After reflecting on it, I have 2 reasons for choosing to share:

1.  Family members.  I know that friends and family drop in here to see how things are going.  I am pretty candid about our lives, and have a tell-it-like-it-is style… This will be a way for loved ones to really know what’s going on.

2.  Encouragement.  For those who are facing a similar course in life.  Whether it is themselves, or a loved one who are traveling down this path.

In the beginning:

Grandma M- a strong willed, hard-working, spunky-humored lady.  Opinionated at times, gracious and charming at other times.  Has a dedicated heart to those whom she truly loves.   Lived alone and independently, living the American dream of owning her own home and living comfortably within her means.

LOVES her kids first; grandkids 2nd; me, not so much.  Understandably in the beginning.  Her troublesome son whom dropped out of school went off to finish highschool at his dad’s house.  Relatively soon after graduating, this 19 yr old son met a 22 yr old gal with a child.  2 yrs later we married.    I soon realized that I would never be good enough in her eyes.  Over the years she continued to ‘pull me aside’ for ‘a talk’ when she would visit.  This shower is unsanitary, you really should learn how to cook, you really need to do something about son #3 hitting his older brothers, this room isn’t clean enough for me to sleep in, when are you going back to work, etc…

Are children a blessing or a burden?

Grandma M accepted our Joey from the beginning.  I think maybe because she saw how in-love her son was with him (btw, dh completely fell in love with my baby Joey, 9months, before ever falling for me).  To this day, Joe is a favorite.  I could pretend it isn’t true, not be so brutally honest… the other kids already recognize this… it is what it is.

Nick came along next and she treasured him.
TJ was next, and she was hesitant.  “A 3rd child?  really?  Well, I hope you can afford it.”
Katie… although appalled at us choosing to have another child, she softened when she realized it was a girl.
Andrew- quite disgusted that we would have more children.  “I just can’t afford all these kids”  ???
Bryson:  ba-ha-ha… I wasn’t going to tell her, lol.  I made Fred do it.  *smile*  Basically threw her hands in the air.  1 day after he was born I given one of those ‘talks’.  “I hope you are done now.  You are going to get fixed, do something to avoid this right?”

Now to be fair, Grandma M just simply is not a ‘kid’ person, and that’s ok.  But… she really does LOVE her grandkids, she just thought we, the parents, were crazy for wanting so many of them.

A few years ago:

With the loss of her 30 year career came the signs of oddities.  Looking back now, one has to ponder whether the oddities began because she lost her job, or if she lost her job because of the oddities.

In a few short years, so much has happened.

Grandma M lost her job; Chanelle (my lovely s.i.l.) had moved back from Ireland.

Chanelle purchased Grandma M’s home so that she wouldn’t ‘lose’ it.

Being a financial burden on Chanelle, we moved in for a season to help til it sold.
(recognize at this point that Grandma M went from ‘alone’ to
8 extra people in her 3 bedroom home, 5 of them being children no less!)

Sold home again, tried living in an apartment on her own, Dr appts to unravel the mystery began.
“depression” was diagnosed, but the oddities were increasing none-the-less.

no job, no income, savings dwindling… we offered her to join us when we moved back to our small town.

Admittedly, I was a bit surprised she accepted our offer.  Moving from the only area (big city) she has ever known to live with a houseful of children (in wee town nowhere).  But the cost was in her favor- free.

In this past year alone:

Has lost most daily living skills;  ie doing chores, dressing, making a sandwich, dialing a phone.

Has zero income, no medical insurance.

The first half of the year she has lived with us we sought out her diagnosis.  This was a drawn out process; mental health services, primary care provider, neurologist, etc..  she has been diagnosed with severe dementia.

She has ran away 3 separate times.  Once was after she was no longer allowed to drive.  She hates living with us.  (do note:  I did not say she hates us)

Since January, Chanelle & Fred have been trying to find financial resources for her in the hopes of letting her move out and into some form of assistant care.  This is not something we want or prefer, but rather what we feel we have to do for her.  We have found places, but they cost up near $3000 per month.  Financial assistance is not an options while she still has money in a savings account.  Ironic that we didn’t let her spend a drop of her money (cept on medical expenses cuz we just can’t afford that) for any expense, and now she needs to spend her money!  So we began to charge her a small monthly fee (rent) and had her begin to buy her own necessities (ensure, toiletries, etc).

In June it became apparent that Grandma M needed more assistance than I was capable (or comfortable) with.  *intentional lack of details here*  So we began to have a caregiver come to our home.  This has been such a blessing.  This lady is fabulous with Grandma M.  Not only helps with the personal things in a professional and respectful way, but because they are around the same age (yes, M is a very young 62 for this type of struggle) the caregiver finds fabulous things for them to go out to do!  Swimming, lunch, walks, concerts by the water, musicals, etc…

Now:

We have had Grandma M travel to California twice this summer to visit her daughter.    We do recognize that this is probably the last trip she can make as it is too hard on her to travel now.  We are also dealing with that she has an unhealthy obsession of her daughter.   She calls her numerous times a day, talks about her all day, asks about her all day…everyday.

on the flip side, I am the bad guy.   surprised?  yeah, me neither.  *sigh*   “I” make everything tough on her, “I” steal her make-up, etc…  Amazingly, she can get more angry at me for talking to the caregiver about her needing to change her clothes, than at her son for having to go through her personal belongings to find soiled clothing.

We are still trying to seek out financial assistance in.any.way.we.can.  She is old enough for social security now, which is a catch 22.  It is not enough to help her find a place, but adds to her *income* bracket for not qualifying for assistance.  :^o   Chanelle, bless her heart, is working diligently to seek disability for her.  We do not know when that will kick in or if it will provide enough of a monthly income that is necessary for the proper care we seek for Grandma M.  It is all unknown and scary for us, and quite frankly hard to live with someone so miserable to be around the people that are loving on her the most, yet not being able to do anything about it for her!

Grace & Mercy

confession:  I prayed desperately before M moved in with us that I could just simply have compassion for her.  That after years of knowing I am not her favorite person, that I could just simply care (about her) regardless of  her response toward me.  Can I just admit how oh.so.hard it has been?  Oh, don’t get me wrong, God has given me a grace to love on M.  To serve.  To care.  To guide.  To be patient.  To understand.  To see past the fears, anger, & oddities.  It is the rejection that I struggle with.  I know the why behind it all, but I just do not have tough skin for ugliness.  I just don’t sit well with people not liking me for the sake of just not liking me.  But I reflect upon Christ’s Mercy for us, that while He was rejected, He still died on the cross for me (and for you), and I am humbled.

Hope & Love

Hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.  Romans 5:5

Please pray alongside us that all things will fall into place according to God’s will for us all~