the long goodbye

Night had fallen even with it not being late by the clock's hour. Early darkness is the norm on these short days of December. Alan and I were on our way to visit with mother. Alan, being my most recent college graduate, used the words "the long goodbye" in referring to mother's illness. Today these words are reverberating in my mind just like a scratched record...the long goodbye, the long good bye, the long goodbye...

Because that certainly describes it perfectly.

 Especially the last five years have left us experiencing the loss of my mother with the reality of her physical presence sitting right in front of you. The time has seemed to stretch over a long period of time because the developments of the disease are agonizing as they advance with persistence. But with every visit I find myself wanting to tarry because I know with a surety that the final goodbye will come.

the weight of happiness

It does not matter how much extra activity this Christmas season entails, daily trips are still made to visit with my mother. Her ability to be understood or to understand what we are saying may depend on any given day, but we have had some very good visits with her.

This afternoon I crawled in the bed beside her.
She said, "I'm happy now."

Sometimes the small things say everything. 

a tender spot foiled

 I have decided to record here some of the stabbing issues that loving a person with dementia produces.

 The days of excitement we are accustomed to seeing when we visit my mother have come to an end.  She use to light up like a Christmas tree when we would visit, her eyes smiling with warmth, the delight in seeing me her daughter and her grandchildren could not be contained, it was genuine and flowed from her very essence.

Some things ending might be good, but this is not one of them.

 I have been ignoring this one, not willing to admit it because I keep thinking it will pass and perhaps there will be a return to the way it has always been. There is a definite passing, but just like the disease which has taken so much of her from us these past years, the realization of this particular kind of passing is very difficult to witness. This one wants to cling tightly like super glue. I feel myself wrenching it away. It doesn't help when we tell ourselves, "It's okay...she is not herself...it is understandable, a product of the disease". It is yet another level of her decline, and it deeply hurts in an area that has been assigned to her alone, for her special kind of love, in a place that only she can fill. A place that she has always filled in the past.

But here is the true heart wrench ...when an aide or nurse walks in, I see that look in her eyes for them. They have become her pride and joy.

tending to my garden

About two weeks ago I received a telephone call from Witt asking when I was planning on visiting Mother that day. I stopped by the tire store where he was having his tires rotated and picked him up on the way. Then three of my children and I spent over an hour together with Mother.  The lingering warm days allowed us to take her outside to the courtyard. It is quite an ordeal to get her from her bed to the wheelchair since she is no longer able to stand on her feet, but they have the niftiest equipment available to make it  possible.

We have spent many hours in this courtyard since my mother's arrival at this place. 

On this day I snipped back the languishing pansies. I find that I have several gardens to tend.

 Flexibility is the key.

the courtyard

Mother loves to go outside. One of the areas we take her to is the inner courtyard. It is surrounded by brick walls and windows. But the security and comfort there is real. The flowers, fountains, benches and tables provide a pleasant enviroment. "Playing" swings have not tempted us one little bit.

nightgowns

 Nightgowns were lifted from the dryer smelling clean and fresh; the softness of the material radiated comfort. I have taken on the extra chore of doing my mother's laundry for the past couple of weeks. It was time. No where will one get the concentrated effort of laundry done correctly like it is done at home.

It has been just a little over a year since Daddy was diagnosed with terminal cancer. He went to the hospital one Sunday morning in late October and was never able to return to his home again. This past year has branded itself into every pathway of my life. From these experiences my soul has developed at times what seems like deep valleys and crests; shadows and peaks; but there are also spectacular views which can only be seen through the lens when you are behind the camera.

 Lately, I have experienced a sense of relief, an uplifting in my spirit. Some of the days of last year I might relish the thought of living over, then there are other days I would prefer to stay as far outside my line of consciousness as possible. There are things that I have not talked about in this space, and many things only briefly recorded in my personal journal. I have lived by His grace, through His grace and because of His grace.

But as my mother's nightgowns were tenderly folded I was faced again with the overwhelming truth of role reversals. The last time such mindful care was spent over nightclothes was with the tiny gowns and sleepers of my children when they were very young. Even the recall of Ivory Snow and Dreft was stirred this morning in the simple act of laundering my mother's clothes.

basketfuls gathered

 I visited mother by myself this afternoon. The children were taking a walk in the woods with the neighbors, vegetable soup was simmering on the stove at my house and the flour mixture was waiting for the biscuits I would make upon my return.

As usual mother would eat very little. If it was not for the high protein shakes she imbibes, her food intake would be extremely low.

I was driving home just when the sky was at its most glorious, streaked with the colors of cotton candy.
 "Thank you Lord" were the words that began my prayer. Tears swelled my eyelids and slid down my cheeks. "Thank you Lord for being able to visit the nursing home, for the nurses, the aides, the staff, and especially for the precious souls I get to see and touch every time I enter into that place."The rewards are very evident to me, my life is only richer. Seeing with the eyes He so graciously gives is a gift.

I read in the newspaper recently how the elderly are a heavy burden in our society, and those words gripped me.  It is not a burden to care for those you love, yes, it is most certainly a responsibility, but one with great yield. I arrive there every day sharing my few "loaves and fishes". But I seldom leave without the gatherings of full baskets.

Spoons and Smiles

She eats so little. On most days I will make an effort to be there for one of her mealtimes.

"Oh, chocolate ice cream Mama. You love chocolate ice cream." I spoon small portions into her mouth. Her sweet tired eyes look into mine.

"It's good," she whispers.

I smile as she fixes her gaze on mine.

"That's enough", she says after three spoonfuls.

timeless truths

Back when cross stitching occupied my days, I stitched this picture as a gift for my Mother. When it came time to move her from her house to a care facility and to bring Daddy to my house in order to care for him in his last days, I snatched it off her guest bedroom wall. I promptly positioned it on the sun room windows.

 Now that school has begun back in full, my two visits a day to be with my Mother has inevitably slipped into one visit daily. My aching heart says sitting with her all day would not make it any less poignant. I only get one go at this type of keeping. Constantly I question if I am doing the very best I can. It is my heartfelt desire to honor my dear Mother and to honor my Sovereign God. In the process I want to walk and not grow weary, to run and not faint.

add-a-longs

We have exceptional delights while visiting the nursing facility where my mother lives. Upon visiting such a place often enough you can not but help to allow the other residents to bury deep into your heart. We really do not dwell on the fact that we will not be going there indefinitely..it is for a season, as in there is "a time for every purpose under heaven."

But we love our extra add-a-longs. They look for us, they smile, they wave, and if able,  they shuffle to be with us. Life resides here and we embrace it.

He said, "Cheese, heh, heh".  I do believe I exceptionally obliged with an extra cheesy smile.

After a meeting with the staff at the nursing facility where my mother resides, we all came to the agreement that it was time to call Hospice. The signs are there and the extra help provided would be the best thing for her and for us.

As I walked out into the blaring sun's rays I slipped on a pair of turquoise blue sunglasses.  Unheeded tears could fall. I am not ashamed of the tears or even surprised by their intensity, but I wanted to hide behind something.

answers please

I hesitate to post. But as I was driving home this early afternoon, my heart was heavy. Mother has been falling, out of bed, out of her chair and finally with this last fall she broke a wrist. It has been a week of maximum concern for her. I crave answers. All we seem to have is just a few medical professionals doing what I assume is best for her. 

feeding the fish

There is a Koi pond in the courtyard where my mother resides.

We visit this courtyard about every day. Mother enjoys the warmth of the outside and we all have taken a feeling of ownership with the fish by means of familiarity.

So it was a treat when those who feed the fish cared enough to let Charlotte help one afternoon.

Truthfully, I can say she is probably the youngest regular visitor at this skilled care facility. It only seemed better that she could have extra things to make her visits special.

images of daily visits

"There is this difference between the grief of youth and that of old age; 

youth's burden is lightened up by as much of it as another shares;

old age may give and give, but the sorrow remains the same."

                     O. Henry "The Count and the Wedding Guest"

Of all the images that flash across my mind, this one has sticking power.

Father's Day

It certainly was not planned. No where was it projected that I would drive on this day the last car my father drove before he got sick.

While he was still alive we sold the nicer car, but his everyday around town car has been parked at Witt and Claire's, until this weekend. It is time to sell this car too and we are thinking about purchasing it for Alan. Alan's car is older and a gas guzzler, a smaller gas friendly vehicle for him would be a good thing, especially when he begins to pay his own bills! We will not get into that matter here, he still has one more semester of school before that becomes a reality.

I got behind the wheel, turned the key in the ignition, put the car into reverse and backed out of my driveway. The children and I headed over to visit with my mother and the emotions that washed over me came unexpectedly as if I had caught the back draft of a hot and heavy wind. I viewed the tiny compass he had placed in the car, I had Alan open the glove compartment to see if I could possibly see something of him and grab a bit of his essence once again.

After all it was Father's Day, and it had not been necessary to purchase him a card or present...I missed him.

 My mother was a servant. By this I mean she served others well. Her role was to assist my father and she absolutely loved serving her children and grandchildren. Idleness is difficult for her these days, yet she is very limited in what she can do. But I know in her mind she performs tasks over and over. I can ask her what she has been doing and she reports how she has made her bed, or cooked breakfast and straightened up.

When she comes to my house I look for things for her to do, simple tasks. One day I even gave her a  paring knife and some cherry tomatoes to cut in half for the tossed salad, Claire was by her side making the salad. We watched as Mother began popping the tomatoes in her mouth. Redirecting her to the task of what needed to be done was not hard.

When she came to the house to celebrate Charlotte's birthday last week, I gave her the task of putting the candles on the cake. It made her feel useful, a need she retains for being in service to others because some things truly never change.

the Aunts

The telephone rang early this morning, which is unusual and startled me, unaccustomed to its invasion of my morning's quiet.

 It was one of the aunts.

"How is my sister?"

It all started when my parent's living arrangements changed. I became the main contact for all three of the aunts (pronounced ah-nts in my birth state); my father's two sisters, aged 81 and 90, and my mother's sister, aged 75. They all hail from the next state.

When Daddy first became sick and was diagnosed at the hospital, his sisters would call for updates. When he arrived at my home they would call regularly in order to speak to him.  Since his hearing was not the best I would put the setting on speaker phone and carry the phone to his bedside and thus began the so familiar conversation of brother and sister. As I heard the manner in which they carried on with each other, it would fill a portion of me that reaches down and defines family. Of course, they never failed to ask about my mother and her present condition either.

Almost weekly the voice of my mother's sister would come over the distance via phone lines wanting to know how her sister was doing. A special relationship developed with her these past months especially since she lost her only daughter back in January 2009. She has managed to displace the connection I have lost with my mother. Her voice is my mother's and my grandmother's, the females that went before me.

After Daddy died, all three of them would call quite often. I learned to position myself, grief needed like-company and the sharing of a life that had slipped from us wasn't instant like email.

As a grown daughter of my parents, I am also characterized as a grown niece of my elderly aunts. I am cognizant of the fact that they have known my father and mother longer than I have. But the history in the shared span crossed is sweet indeed.

That is why I am utterly thankful for those phone calls. The tuggings in my heart are welcomed springs as I pick the phone up to talk with any one of these three special women... the aunts.

Aunt "Easy", who will be 91 in July. I can only hope I will be as strong in body and mind as she is if I get to be her age.

smile

We all get posed, loving on my dear mother on Mother's Day.

But of all the photos we were able to take with mother while she was visiting on Sunday, this was the only one we could get her to smile.  She gets the blankest look on her face as we busily snap pictures. We must keep saying to her,  "Smile, Smile, Keep smiling Grandma."

 I see this same blank look in pictures of her from several years back. That was before we openly talked about her disease, even though we knew it was there lurking...behind that blank look.

The bruised side of her face is from a fall she took over two weeks ago. 

fine dining choices

It is called fine dining. She has her assigned place at a table with two gentlemen, Mr. L_____ and Mr. M____.  She is given choices for food selections at lunch and dinner during the times she dines in the dining room. Her choice of a particular meat, vegetable and starch. I see her gazing ahead trying to take in what the aide is patiently saying as the choices are given.

Then she looks up into my eyes and asks, "What do I want?"

"Chicken or beef, Mama?"

It is always the first food choice mentioned that she chooses.

Quickly in my brain I am offering what I remember as her favorites first. It is good that she has these choices.

keeping her safe

She falls.

Quite often Mother falls. Sometimes the damage done is more serious than at other times. She forgets she can not walk, gets up from her wheel chair and downs she tumbles, hard.  Such was the case this week and her face took a beating.

The girls and I visited with her and wheeled her chair outside to the bright and sunny patio. She smiled and said it was warm.

We watched the fish in the pond and drew her attention to the azaleas in bloom. As long as I am with her I know she is safe. I am learning how to apply the locks to her wheelchair, to keep my eyes on her at all times and to remind her not to get up.

Cheerleading

Mother is not interested in any sort of restorative physical therapy. Consequently, she is getting harder and harder to assist in getting around outside her wheelchair.

I have become her daily cheerleader.

I work with a physical therapist in encouraging mother to cooperate and participate in simple walking steps with her walker and mild leg exercises. Yesterday she became so agitated with me she stated," I did not make you do these things. This is a terrible way to treat someone."

Not giving up. She would not have given up on me either.

epiphany

Grief, it has no mercy. Like a gong it reverberates long after being hit.

In the wee hours I was aroused this morning. An ephiphany of sorts stirred in my mind. I have been  deeply grieving because  I could not provide the particular kind of care for my mother that I did for my father...in my home. Constantly it has been a truth that has squeezed me inside and out. But the fact of the matter is I have been really grieving the sad condition my mother's disease has wrought. 

A bud that has deep roots.

ageless beauty

She wears plastic beads around her neck and chipping pink nail polish on her nails. Most of her everyday jewelry has disappeared, so the cheap bright colored beads must suffice. Looking pretty, it's ageless. 

  Yet we know beauty truly is in the eye of the beholder.

 Rose and I went over this evening to do her nails. We pulled the little tray table over to her wheel chair and she posed her hands prettily on the tray.  She sat still while the coral pink polish was smoothed over her nails. I have discovered these little acts of service help us too. We ache to do so much more.

a boyfriend

 My mother is looking for a boyfriend. She lives in a warped sense of time in her mind, one of being a young girl, one of a marrigeable age. You must understand, she is eighteen years old and men are asking her to marry them.

This bothered me greatly when Daddy was still living. It would have broken his heart, even though he knew "deep down" she was not her normal self.

 It should be easier to bear, since after all, she is now a widow. But I  find myself so disconcerted in my soul. Yet another area of reversal, she is the child while I am the adult.

expressions

Once upon a time there was a pile of notes to write, thanking those who have expressed such wonderful expressions of love to me and my family at the death of our father.

The pile has shrunk, dwindling to one here and there. I hope I do not forget anyone because no act was too small and I want the giver to know it full well.

nametags ignored

Keeping my mother clothed is a challenge. The facility where she lives is in charge of her laundry. We write her name on every single item, still there are quite a few things that turn up missing.

 Who is wearing my mother's clothes?

Grieving

There are no set rules for grieving. But I am equally convinced, just like snowflakes and dying, everyone has their own unique participation in grieving.

Yet there are similarities too: Empty rooms, possessions to dispose of, aching.

I find myself wishing I would have had at least one more day with him.

a place for mother

Meeting with the staff where my mother presently resides.

Finding a place for mother. It would be nice to say a perfect place, yet I know there is no perfect place. But we can hope to find the best residence for her of all that is available. She is presently in her second home since moving here near me. This time it is a skilled care nursing facility which seems to fit her better for now.  She suffered a huge fall three weeks ago and is still recuperating. The phone rings and we answer trepidly when we spot the name of the nursing home on our caller ID.

Mourning

One day before my father's eighty-fifth birthday, we laid his body to rest in the state of his birth. It was a bright sunny day with mild temperatures.

We lingered, greeting and hugging those who were there to honor my father.

silence

I listened this morning. No one coming in the back door. Christina, my morning daily help, wasn't coming back because her service was no longer needed.

Just as we became accustomed to our new routine with caring for Daddy in my home, now we must acclimate ourselves to what seems like empty pockets without him.

No more morning phone calls from Hospice setting their day's schedule. No food trays to carry upstairs. No visits from aides.  We could even go off this afternoon without anyone being in the house.

Changes once again.

looking for color

Mint green walls, sun rays falling across a blue cotton pillowcase, and a fuzzy peach blanket- these provide blotches of color in my black and white world. 

Every single day this week has carried troubles unique on its own, yet there have been great joys too.

From sleeping all day, hallucinations, anxiety, confusion.

Looking for foods that he would eat and trying to give comfort in every possible way.
Administering medications, and yes agonizing over that too. My hands did not have to shake because my insides were shaking plenty.

I learn daily it is impossible in my own strength...yes, proven over and over.

under the shadow of His wing

I keep. I keep under the shadow of His wings. 

Therefore, I reap pearls. 

A boggled mind these days, aching to connect with those that are caregivers for elderly parents, and more importantly to share my journey. Sometimes the thought surfaces, "I will be glad when things get back to normal." Normal? Where does that come from and where is it going to take me? If I am able to manage a brisk walk around the block, my mind clears somewhat; walking and praying go hand in hand. 

Many mornings I find myself sitting in the sunroom crying just as dawn emerges. Tears of release, the begininngs of preparing my heart for whatever may surface that day.

So here it is, my very first post. I do not know exactly where things will go from here, I just knew I had to record it somewhere or the" boggles in me would explode!