Closer...

I haven't written on this blog for a long time. Things were pretty much status quo , and although we were seeing decline, nothing really worth writing about.
That changed with a phone call from the Oakwood nursing staff (it's never a good thing to get a call from Oakwood...I get a sick feeling just seeing the caller ID.)
My mother has been losing a significant amount of weight as she is sleeping more and eating less. The recommendation was to have her evaluated by hospice in the hope of giving her some extra personalized care.
We haven't been in denial, we know that this disease does not get better...but still the word "hospice" gave me a start! That evaluation will happen next week.

What has surprised me is how emotional I am with this new development.
Most likely this was my mother's last Christmas, and the journey could be approaching the end.
I've grieved the loss of my mother for many years.
The way I now choke up and have lots of teary moments... unexpected.

So much to learn...
knowledge that is painful...
one step at a time...

A New Experience

It's been awhile...mainly because there wasn't much to write!
But yesterday changed that!
Miscommunications meant that Mom was taken to the ER from Oakwood, and was there by herself for over an hour while I drove out to Oakwood thinking she was there, and then to St. Mary's. I was relieved that she was doing fine, but she was really glad to see me. Because she was experiencing a significant amount of rectal bleeding, the ER was definitely the right medical choice.
I don't know about anyone else, but for me, time CRAWLS in the ER. Everything seems to take so much time, but at least they had decided that Mom would be admitted. The doctors and nursing staff were wonderful, and were totally correct in their assumption that it was a diverticular bleed.
Once in Mom's room, again the nursing staff were amazing. The GI specialist made the decision to scope her last evening, and not only found the bleed, but clamped it, and as of right now, there hasn't been any bleeding since! I can't say enough good things about St. Mary's hospital and Dean doctors!

What I really wasn't fully prepared for was how Mom in her current stage of Alzheimer's Disease would handle a hospital stay. She is so disoriented, but then for small bits of time seems to "get it".
Taking off the heart monitor leads, messing with the IV port, picking at the ID, fall risk and DNR bracelets, being fixated on finding her clothes, getting up out of the chair and taking herself to the bathroom while I was away getting some food, and of course, the same questions over and over and over.
I have been in tears today more than usual, and chalk it up to exhaustion and stress...because physically Mom is doing well and should return home to the Knoll at Oakwood tomorrow.

Thankful for Jessica and Will who were with her this morning, allowing me to take a walk through the gardens and zoo; and for Tom, who when I was at the end of my rope, took over and allowed me to run some errands and have a bit of time at home.
Also incredibly thankful for the staff at the Knoll... I always appreciated what they do, but after today, that increased exponentially!

So now I feel ready to go back to St. Mary's for a few hours this evening, to be patient and answer those questions over and over and over...

Venturing Further

Just as I've ventured further on a path I like to walk, 

(some of it still unknown to me), 

 and come upon an unexpected obstacle...

so it is with my journey with my mom.

I feel like I'm venturing further into the unknown area that is her Alzheimer's Disease.

Unexpected challenges pop up and must be dealt with.

More and more often she wants to "go home",

and I feel so inadequate, 

not knowing where she thinks "home" is, 

and always pointing out that she IS home 

(and all the positives that go with that).

I know that it is a blessing for her to be at the Knoll at Oakwood Prairie Ridge.

I know that we are fortunate that she can afford to live there.

I appreciate the staff and the relationships I am building with them.

I am blessed with a supportive family, and friends who are "family".

Even so, I feel alone...

with no way of knowing what's around the bend,

as the journey to the unknown continues.

Changes

Changes are coming...

I can feel them as the air cools.

I can see them in subtle ways,

and like the leaves, changing right before my eyes.

Mom never calls my cell phone anymore, just our landline (and the number we've had for more than 25 years). She thinks she's working at the Care Center in Prescott, and needs to get home, but doesn't know the code, and she's told Tom, "I know that Kathy knows the code"!

Today she acted like it was years ago that she lived in the apartment at Oakwood...

I kind of wish I had asked her where she lived in between...

Somehow God gives me patience and the ability to answer calmly, over and over, and over.

I try not to look too far down the road,

yet I know that changes are coming.

Sunshine and Clouds

Sunshine and Clouds

Moments of joy in the midst of tears

The past week for me has been a blur of meetings, phone calls, 

and settling Mom into her new "home" in Oakwood Knoll. 

Emotional and exhausting...

Confusion and disorientation have been very present for Mom.

She has a difficult time realizing that she is still at Oakwood, 

even as we point out familiar places whenever we leave the Knoll, 

and she can see her apartment from her window.

The first afternoon she was convinced that she was in a hotel room in Wisconsin Dells, 

(I don't think she's EVER stayed in a hotel in the Dells!) 

and seemed amazed that we had brought her recliner and her orchids!

It's an adjustment process, and really, she's been a trooper!

She's friendly to the other residents

(the latest is that she thinks she's working at the Care Center in Prescott)

and has had visits from her friends who've known her for years.

Each day seems to get a little better

And I focus on the sunshine rather than on the clouds.

Suddenly...

I knew it was coming. I agonized over how the timing would work out... when would a room be available ? How would I know it was time? When to start the Long Term Care policy knowing that there's a 100 day elimination period? Praying for these answers...

and then suddenly...
while talking with the Health and Wellness Coordinator, I told her that I thought we were to the point where we would take it when a room opened up...
and then she told me a private room had become available.

In the next couple of hours, there were phone calls I had to make, and bursts of sobs as I anticipated telling Mom about the move, (would she react in anger, feel like I've betrayed her?) quick facebook messages requesting prayer, and then the drive to Oakwood. I can't say enough about the amazing staff at Oakwood. The social worker was already in Mom's apartment when I got there, and she facilitated the discussion.  Mom  handled it so much better than I had feared, and I felt relief in that we've cleared the first hurdle. I told her we would make the room her home, and she asked me if I was sure about that. I answered that I couldn't be sure, but I was hopeful.

So much to think about, to take care of, paperwork...her move will officially be on Tuesday providing her doctor's forms get to Oakwood by Monday. As long as I'm busy with tasks, I am fairly strong.
Still, breakdowns occur at odd moments or in the middle of leaving a phone message, or telling a friend...

As emotional and hard as it is, it is the right next step, and it is the right time.
God answered my prayers.
I am supported.
I am loved.
I will rely on His strength as I continue to walk on this journey.

The Search

Today I felt the clouds closing in as I arrived at Mom's to take her to a couple appointments, and was greeted with "I can't find my purse"...

I started to ask her when she remembered having it last, but then stopped, because of course she wouldn't remember. Instead I asked questions, made phone calls, grasped at "straws", and finally determined that the missing purse must be somewhere in her apartment.

So the search began.

Every room, closets, cupboards...

not just once, but multiple times.

Where would a person with Alzheimers' Disease
put something valuable like a purse?

Praying to God that He would reveal to me where I should look, 

and for patience and kindness in dealing with my mother who is now more like a child.

Meanwhile, one appointment cancelled, and the other kept in the midst of the search.

Mom kept saying how bad she felt, 

and I assured her that she didn't lose it on purpose,
and blamed the disease.

 I kept looking...

Strange places like the oven, the refrigerator,
under the sink, back to the closets...

on the phone with my daughter, I flipped the top of a shoebox.

And there it was...

the missing purse,

in a SHOEBOX!!

I experienced such relief, but also such sadness.

Another step on the darkening path of this journey...

Thankful that God goes with us every step of the way.

Hidden

In the midst of seemingly endless repetitions of information...

the search for framed photos that weren't in their normal place, 

and eventually finding them in a tote bag...

going through the calendar of life events, 

and making sure the days that have passed are crossed out...

suddenly there was a moment of lucidity, 

(increasingly hidden)

and a question if this was all getting too heavy for me...

my answer that it is what it is,

and we're doing the best we can.

Slipping Away

Contradictions, Confusion, Misunderstandings

Frustrations...

the story changes

her world is smaller

Overwhelmed with loss, I blame the disease

she's slipping away...

New Normal

As I reflect on the past year, I am a bit amazed at what is now "normal"...

Once or twice a week I'm at Oakwood visiting Mom, 

observing and assessing multiple things
(multi tasking at its best)-

mentally and emotionally exhausted when I get home, 

and often in tears with decisions that loom ahead.

We deal with stacks of mail daily
(very little of it ours), 

have now acquired a Buick Rendevous
(which would never have been my choice), 

and

I do Lumosity training every day
(hoping to spare my daughters in the future)

Just part of the new normal...

A New Twist in the Road We're Walking

The cruel disease is progressing, 

taking my mother, and leaving someone who looks like her...

Such a fine line, a narrow stretch of road in this journey-

allowing independence, yet protecting 

God has blessed me with patience when I'm with her,

answering the same questions, 

finding helpful strategies.

I reassure her that we are on this journey together, and that I love her.

the tears come later...

such painful missing

feeling alone

Yet the sun comes up each new day,

and I'm thankful for the opportunity to honor my mother...

answering the same questions,

finding helpful strategies,

reassuring her,

and loving her.

Fear Leads to Frustration

This peaceful scene from yesterday's lunch

truly depicts how I feel... 

Friends have asked me how my mom is doing, 

and how I am doing dealing with her.

In reflection

I used to respond to repeated questions with frustration,

and the real source of that frustration was FEAR.

Fear of the unknown, of the future,

of the responsibility.

So what changed?

I still don't know what the future holds

and the responsibility will only increase.

We do, however, have legal and financial experts in place,

and have taken steps to simplify what we can.

And God has graciously increased my patience and compassion,

which has led to my sense of peace

and enjoyment of times with Mom.

3 years

My dad left this earth three years ago today. I know that Mom misses him every day, but wasn't sure if she would remember this anniversary.  She didn't.  Or at least she didn't mention it as I had dinner with her and then spent a couple hours up in her apartment.  I didn't bring it up either...
I had decided that I needed to be with her this evening, and that was important to me.

Walking on Ice

So far, 2014 has felt like walking on ice.

New health challenges with Mom, 

a talk with the social worker at Oakwood,

second guessing myself

just wanting to do what's best for us all...

there are times when I feel I've fallen flat like I did in the icy parking lot at school,

and other times, like today, when I feel my footing is a bit more sure...

such a slippery path

this journey to the unknown

Weight of Responsibility

I began this blog when Mom was diagnosed with Alzheimer's Disease. I have books, and a folder full of resources. I have friends and cousins who have been down this road, or at least a similar path.
Even with the sense of relief in the diagnosis, I didn't really want to see... but I am being forced to especially now.
I know that denial to a point has been a coping mechanism I've used. When Dad's Parkinson's Disease was progressing, I didn't want to see or know.  I just wanted him to stay my Daddy, and I would concentrate on positives.  I'm generally a "glass half full" person.

That is why these past few months taking on more and more responsibility for Mom has been so painful and discouraging for me...no matter what positive spin I try to conjure up, it's NOT going to get better!
Scary thought for me, and the weight threatens to crush me.

I'm losing my mother bit by bit, day by day. The role reversal is not a comfortable one, and I feel so alone. I realize that I'm grieving for Dad in a renewed sense as well.

But I don't want to be so sad...
I want to be thankful.  I want to experience joy. I want to focus on relationships that are healthy and good. Even as I feel broken, I search for beauty and bask in the warmth of God's presence in His creation.

So I share my tears with Him,
draw comfort and strength from inspirational songs and His Word...

and know that He walks this journey to the unknown with me to the very end.

Cloud in My (otherwise) Blue Sky

I refer to Mom's Alzheimer's Disease as the gray cloud in my otherwise blue sky.

With so much to be thankful for in my faith, my immediate family, my job, my friends, 

my connections at Full Sail...

generally I am able to manage the stress of this one area of my life.

The past couple weeks have been more challenging, 

because serious issues have arisen.

I've felt panicked, stressed, engulfed by the looming clouds...

Yet the sky is still blue...

and God gives me the strength to love, and live on...

able to laugh at some things forgotten,

and determined to make things as right as possible

for as long as possible.

Fear

I had to stop over at Mom's today after school for some paperwork. I had told her last night on the phone that I would be doing that...I called before I left work, but couldn't reach her on either her home or cell phones. Telling myself not to panic, I kept trying. Still no answer.
At Oakwood, I climbed the three flights of stairs to her apartment, rang the doorbell, put my key in the lock only to find it unlocked...
Fighting back fear as I walked in and looked around. Times like these I am terrified that I will find her hurt or dead. Then I saw her keys...where could she be without her keys?
I found her at the Community Center...she had played hand chimes with the choir for the vesper service, and had no memory that I would be coming.

I thank God that she was safe, and I pray for patience and for Him to alleviate my fear.
 This path is slippery...

phone calls

it might have felt like a call from the principal's office at my child's school,

although I never experienced that...

but I imagine the feelings would have been the same...

the phone calls I received at work, not about my daughters, but about my mother,

were pretty upsetting...

and I wanted to say to her

"JUST GET ALONG WITH PEOPLE"!

yet even as that might make ME feel better,

somehow I just know it wouldn't be beneficial.

so i find the strength to respond to the phone calls with gratitude,

and I truly AM grateful that I don't need to "handle it"...

I allow the social worker and volunteer coordinator to do their jobs.

and realize it's just another step

on this journey to the unknown

almost like having another child...

This morning I got an email saying Mom's Apple ID password needed to be reset.

I made two phone calls to her to make sure our appointment at the bank was set up.

She told me she had fallen outside this morning, gone to Urgent Care and had a CT scan.

I patiently repeat information, answer questions, tell stories like it's the first time.

and all the while I am thinking....it's like having another child.

I know that this journey I'm on is known to many.

I've connected in this past week with multiple people who have such stories of their own to tell.

I now know that God was not putting Matthew West's "Strong Enough" on my constant playlist

to help me with the job transition

but for this...

HE is strong enough for both of us

and I can do all things through Christ 

who gives me strength...

one day at a time

one answer at a time

one step at a time...

Good News...Bad News?

Mom had her MRI on Thursday and called to read me the letter she received with the results.

From what she read to me, I would interpret the results that we caught it early, 

as there was no evidence of a specific part of the brain being affected, 

no evidence of strokes or tumors,

but a decrease in brain size that is common with age and memory loss.

Mom is convinced that the diagnosis of Early Alzheimer's Disease

is no longer a valid one based on what she read.

I feel like we're back at square 1

in a way.

And after spending the evening with her,
patiently repeating information that she seemed to hear for the first time, each time...
I feel discouraged
and sad...