The One That You Don’t Have To Read…

…But I have to write.


I have to write it, because I have to get it out of me. I need to put this information, this “stuff”, these memories out there – somewhere, anywhere, outside of me – so that it isn’t inside of me all of the time.

But you don’t have to read it.
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It started in mid-April, around the time of Mom’s birthday. We could see her failing, and while I tried to steel myself against the inevitable, of course it happened anyway.

During April, while she was at the Geri-Psych unit, we got the “reprieve” that I had heard about from our Doctor. He had told us that for reasons that no one really understands, there is often a period of extreme lucidity not long before these people – these stroke victims, Dementia patients, Alzheimer’s patients – pass away.

I asked him how I would know, given her condition. He smiled gently, and looking over the tops of his glasses said “You’ll know. It will be obvious. If and when it happens, treasure every moment of it.”

We did. I did. We had a brief, amazing window of about 72 hours, and during that time, I was able to hold her hand, and talk with her, and know that she *knew* me. She said my name – recognized my face. I told her how very much I loved her, and how I was doing my very best to care for her. She replied “I know, I know you are. It’s OK, honey. I promise.”

She got to see Twinks in her Prom dress, (the nurses let us sneak her in after visiting hours that night) looking so achingly beautiful.
We laughed about old times, and enjoyed her favorite snack of Diet Coke and Cheez-it Crackers together.
She was able to enjoy and read the first picture book I had recently published.
We brought her birthday cake, and she blew out the candles – and ate three pieces!
I told her that I wanted her to get well, so she could come home again.
She told me not to cry for her.
And then, as suddenly as she was “present”, she was “gone” again. The blankness came back over her eyes, and we couldn’t reach her.

The last three weeks of her life were spent in an Alzheimer’s/Dementia unit at a local “Senior Living Center”. It was a very beautiful place, with huge sunny windows, crown moldings everywhere, and a kitchen that would (literally) fix whatever the resident wished at any hour of the day or night.The entire staff was amazing. Her apartment was cozy, and cheerful, and the nurses station was just across the Common Area from her door.

Outside her door was a “Memory Box” that we filled with things that were important to her. I made the little quilt from scraps of her favorite fabrics that she used when she was quilting.
I tried, several times to show her the box; I pointed out her favorite music, her little glass bluebird, and the little quilt I made for her. It seemed as though she never really could “see” it, though.

As those three weeks passed, I knew she was getting ready to go. She quit eating, and although I could sometimes tempt her to take a bite of this or that, she simply was no longer interested in food.
The week before she died, I took her to get her hair cut at the Senior Living Center’s Salon. The stylist did a great job, and Mom seemed to be pleased with her reflection in the mirror.

Five days before she died, she began to cry out whenever we tried to move her; Hospice brought in a special air mattress to keep her comfortable. Our Hospice nurses were so amazing with her – they made sure we had everything possible for Mom all the way through the end.
Three days before she died, I had already “moved in” with Mom, and was sleeping on a cot in her apartment, next to her bed. The Senior Living Center staff brought in a real twin-sized bed, and then moved the cot into the other room for Twinks or TW to rest on. They also brought in a comfortable upholstered chair for us, so that everyone had a place to sit.

We spent the last three days holding hands, and talking.




Well, I did most of the talking.
She was busy dying.
We did our best to love her away. Twinks and TW were heroic, making sure that everything outside that room was taken care of, so that I could focus on Mom. That last night, I sent them home, to sleep in their own beds. The private nurse that was staying with Mom and I every night agreed with me that they should go home. They would only be 10 minutes away, at the most, and if I needed them, or Mom started to slip away, I could call them, and they could be there in 10 minutes. 10 minutes.
As I had been for the last two days, I sat next to Mom, and held her hand. I kissed her, and told her that I loved her, and that I was going to be there with her. The nurse and I talked softly while Mom seemed to be sleeping. The TV was on Mom’s favorite channel – Nickelodean – and the laugh track from the old sitcom’s that run all night helped keep the room from feeling too dark and somber. The lamps were lit, but placed so that no bright light shone directly into Mom’s eyes, and I had opened the window to let the cool, fresh, rain-washed night air in to the room.
Around 3 AM, I called the Charge Nurse in, because Mom’s breathing was slowing. Her feet and hands were mottled, and I knew, from when my Dad died, that we were getting close to the end. She agreed, but Mom’s heartbeat was still strong and regular, and her lungs were clear. We decided to let Twinks and TW sleep on.
Not long after 4 AM, the Charge Nurse came in again. We closed the window, because a thunderstorm was moving through, and it was starting to rain again. Mom’s vital signs were the same, but the mottling was moving up her arms and legs. We debated calling Hospice and Twinks and TW, but again, her heartbeat remained strong, and her lungs weren’t filling, so we agreed to let everyone else sleep. I joked with the Charge Nurse that she just didn’t want a full house, with everyone coming in and disturbing her peace and quiet. She laughed, and promised to come back in an hour.
Right at 5 AM, I looked at Mom, and saw the mottling sweep up her neck and over her face in an instant. When the Charge Nurse came, she checked Mom over, and asked me to step out into the common area. She told me that I needed to go ahead and call everyone *now*, and she told me that she would get us an Aide to be there, in case the Private Duty nurse or I needed any help.
I called Hospice first, as instructed. I told the answering service who I was, who my Mom was, and that I needed her Nurse ASAP because Mom was actively dying. The answering service placed me on hold, and I went back into Mom’s room, to sit with her. I picked up her hand, now so cool and pale, and I pressed it to my cheek. I listened to the music on hold, and told her that I loved her, but I knew she needed to go on, and that it was OK.
The Nurse came on the line, and told me that she had just talked to the Charge Nurse, was on the way, and asked if I was OK. I told her I was as good as could be expected, and that the Private Duty Nurse was there as well. I asked her to hurry.
I hung up, and sat for a moment with Mom. She was going so quickly now, there was no mistaking that. I told her that I would always love her, and that when she saw Daddy to tell her how much I love him and miss him. I told her to take care of my two babies, my tiniest angels, that we lost before Twinks was born. I kissed the palm of her hand, and I told her that I would never, ever forget how much she loved me.
I called home, to TW & Twinks. TW answered, and I said “You need to come, NOW”. He replied “We’re on the way” and the line went dead. I knew it would take him a few minutes to throw on clothes, and rouse Twinks.
Mom’s breathing slowed even more. There were long pauses between breaths, and I would hold my own breath, waiting for her to gently take another sip of air. The Private Duty Nurse stood next to me, her hands steady on my shoulders. I laid my head next to Mom’s on the pillow, I stroked her hair, and kissed her, and whispered in her ear: “It’s OK to go. I promise I will be OK. TW and Twinks will be here soon, and they will take care of me. Daddy’s waiting for you. If you need to go on, it’s OK.”
And she did.
Mom died at 5:25 AM that morning. TW and Twinks walked through the doors 3 minutes later, just 12 minutes after I had called, to find me crumpled on my knees in the Common Area, crying.
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The Hospice Nurse arrived shortly after they did. She went to Mom, and by this time it was 6 AM shift change. Our favorite Aides had arrived also, and everyone gathered around us. They asked if they could bathe Mom one last time, and dress her in her prettiest nightgown. I told them how much I would appreciate that. The Hospice Nurse came out of Mom’s apartment, and led us off to another room. I sat down, and realized that I was shaking, and couldn’t stop. People came and went, questions were whispered behind me. I remember someone handing me a bottle of cold water and some Tylenol.
I remember the Nurse calling the Funeral Home.
Finally, one of the girls came and hugged me, and told me that they had Mom all cleaned up. Twinks didn’t want to see her, and I told her she didn’t have to. The Hospice Nurse stayed with her while TW and I went back to the little apartment.
She looked so beautiful and sweet; her hair was freshly washed, and she looked like she had just fallen asleep. There was no more pain on her face. I could hardly bear to look at her, but I knew I had to. TW and I both were crying as we gathered up some of my things to take home. Just as we were getting ready to leave, another one of the Hospice Nurses showed up, and quietly pulled TW aside to tell him that the funeral home was on it’s way. Knowing that, we decided to leave, and we went home. I couldn’t bear the thought of even seeing the car they were sending.
At home, I felt like a stranger. I was beyond exhausted, but couldn’t sleep. I needed to eat something, but I couldn’t choke down the food. I took my cell phone into the bathroom, and closed the door. I called Mom’s Hospice Nurse, and asked her: “Did it really happen?” The answer, of course, was yes.
I finally lay down on our bed, and it seemed that no sooner had I drifted off to a fitful sleep that the phone rang. It was the funeral home, and could we come this afternoon to talk about Mom’s “arrangements”? We could, and we did. The same funeral home had taken care of Daddy when he passed away, and so it somehow was easier – they knew us, we knew them, and the decisions were made easily. I had, weeks before, picked out her outfit, knowing that this day was almost here, and so I took that along with us. The same vault that we used with Daddy, and a beautiful pecan casket lined with warm white velvet. The same Church, and we needed to have Mom’s information engraved on the headstone that was already there with Daddy. Yes, a tent at the graveside service. Obituary in the local paper only, and the online tribute was fine. We were encouraged to bring the contents of her “Memory Box” and put it into a similar (freestanding) box. It would be displayed next to her casket for the viewing and at the funeral.
I asked the funeral director if she was here, and was she OK. He gently assured me that she was there, and they would take the best care of her. He asked me if I had a photo of her from when she was still healthy, and smiling. I told him I would email him one of my favorite pictures of her when we got home.
We went home, and after I emailed the photo to the funeral home,I tried to make the phone calls. I finally had to delegate some of them to other people; I could hardly breathe or speak when I had to say the words.
TW urged me to try and sleep again. I couldn’t though, I knew I had to go back over to the little apartment, and see for myself that she was gone. I needed to know that she wasn’t there, and I needed to begin – even if it was just to carry in the empty boxes and suitcases – the process of emptying that space.
I also needed to get the items from the “Memory Box” for the funeral home.
We waited until we knew that “bedtime” was over, and all of the residents would be asleep in their apartments. We moved quietly through the halls, and then found that Mom’s apartment door was locked! One of the Aides quickly unlocked it for us, and suddenly we were surrounded by staff, hugging and crying, and telling us how sorry they were, how sweet she was, how much they would miss us – and how they would help any way they could. When we stepped into the room, we noticed that the bed that Hospice had provided was already gone, along with all of the medial equipment. I was so relieved; I didn’t think that I could deal with seeing the bed, the oxygen concentrator, and all of the equipment just then.
Twinks began packing the remainder of my things, and I began to pack up the groceries & supplies in the tiny kitchen. As we went, there were things we knew we would not bring home with us – all of the bedding from the bed was left behind, as were the last pair of shoes that she wore. We left an opened package of adult diapers and wipes; shampoo and toothpaste. She didn’t need them anymore.
Everything else, we packed, or made ready to go. Finally, it was time for me to open the “Memory Box” outside the door. I asked one of the Aides if she could open it for me. She got the key, and when the glass door swung open, there in the light, so very clearly was my Mom’s handprint on the glass.
Right over the little quilt I had made for her.
She knew.
She saw it, and at some point, when I didn’t see her, she saw it, and left her handprint there, so that I would know.
She knew.

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The visitation at the funeral home, and the funeral itself went well. Mom looked so peaceful, and beautiful; they did a wonderful job of making her look like herself again. It was hard for all of us, to walk in and see her like that, but it was also healing in it’s own way.
The pecan casket we picked out had a “memory drawer” that can be used to send along mementos. There are exactly three things in there: Her eyeglasses, her glasses case, and a note from me. The note says this:
“Dear Mama –
I found my courage.
It was right where you left it for me.
I love you always.
Your Thim”
We had an Episcopal funeral, with the Pall over the casket, and Mom’s favorite hymns and readings. I spoke briefly, and then it was over. The graveside service was lovely; the sky was crystal blue, and the wind was light and sweet, the day not as hot as it should have been, given the time of the year. We played her favorite jazz tune “Mountain Dance” by Dave Grusin, and then we released sky-blue balloons, sending them to her full of our love and hugs and kisses.
And then it was all over.
And now I have to go on. Have tried to go on. Will go on.
Because I did indeed find my courage, and my strength again. Thanks, Mom.
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Thank you – all of you who have stopped by here in the last five months, to check on me.
You didn’t have to read this. I had to write it, because, as I said way up there, at the top… I had to get it out of me.
Thank you for sticking with me all the way through.


Bittersweet times, indeed

Once again we are sitting in a clinic waiting room.

There have been many, many such waits in the last 17 years… Many, many times we have sat here with other families, chatting away the idle minutes while we listen for the children’s names to be called.

We are at Outreach today. The annual Hospital City “roadshow” where the doctors, nurses and technicians from Hospital City set up camp in a local teaching hospital. Today, we will drive no further than The Greater Metro for Twinks annual springtime appointment.

This is, as much of the last 90 days have been, another bittersweet moment. Someday soon I will summon the strength to document everything here, but for now, this brief missive from the field will have to suffice.

In January – in fact, the day after my last post – my Mom had a large stroke, this one so serious that at one point we believed she had less than two weeks left. We spent a long, terrible night in the ER, only to make our way home through one of the worst blizzards in recent history, with Mom in an ambulance behind us. The EMT’s helped us shovel out the front walk so we could get Mom back in the house. I was never so cold and tired at once in my life.

We tried – as hard as we could – to care for Mom at home, but it soon became apparent that we needed more help and equipment than could be brought in to our home. So, Hospice helped us transfer her from home to a local nursing facility, where she was until a week ago. During this time, she slowly regained the ability to first sit, then stand, and finally walk again. But she wasn’t as before. She was clearly still suffering side effects from the stroke, the inability to feed herself being one of them.

She also became increasingly anxious and agitated. Nothing worked; no combination of drugs, no amount of time that I would spend with her could quell the rising tide of her anxiety.

Things escalated when a resident punched her, and then later the same day, another resident tried to throw a glass of ice water at an Aide that she was mad at… and most of it landed on Mom.

It was all just too much in one day. She became so upset that there was no calming her. She was moving non-stop, seemingly searching for who-knows-what. Always pedaling around the NH, ceaselessly going up and down the halls, day and night.

And so, last week I made a phone call that I had prayed never to make… I called the local Geri-psych unit to inquire about admitting Mom for treatment.

Today is also Mom’s birthday. She is largely unaware now; whether she is at home, the nursing facility, or the Geri-psych unit, she seems to not notice. Her beautiful blue eyes are devoid of emotion. She does not know us, or realize that we have a connection to her.

But for right now, this moment is bittersweet because it likely the last such outreach Twinks will ever attend. There will probably be one more final trip to Hospital City, to say “goodbye” and “graduate” from the Shriners Hospital System.

And then this part of our lives will be done.

I have to go… The nurse has called Twinks name. It’s time to begin this last visit, this final chapter.

Bittersweet times, indeed.

In those small dark hours of the morning…

…is when I go a little crazy.

I am tired all the time now – Mom can no longer be left alone.  At all.  Ever.

The exhaustion is grinding.  It eats at my sanity, it erodes my body.

TW & Twinks are showing the effects, too.  We are all snapping at one another; we are all perpetually waiting for our turn to sleep.

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For the last two weeks, we have had what TW euphemistically calls “hired guns” every night; these are trained healthcare workers who sit with Mom every night, Monday through Friday.  They are lovely ladies; sweet, caring, professional.  But they are also here only overnight – at $22/hour, we really can’t afford them, but we can no longer afford NOT to have them.  Twinks has school… TW has work… and I have to get a little bit of rest, even if I have to *pay* for it.

Most nights, it crosses my mind at least once that I am *paying* someone $22/hour for the privilege of sleeping in my own home.  I lie in the dark, doing the mental math. 

The numbers are frightening.

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The weekends have been mine.  Saturday and Sunday nights, I am up all night – sitting next to Mom’s bed, making sure that she is OK.   The job is relatively simple; make sure that she doesn’t try to get up out of bed unassisted.  Help her in the bathroom.  Keep her safe, and comfortable.  Let her know that she isn’t alone; that someone is there with her in those small, dark hours of the morning…

Make sure that she isn’t scared.

Because I am scared enough for both of us.

New Year, New Look

Yep, I’ve changed things around.

Again.

Poor TW says that I like to move the furniture around just to drive him nuts. 

I have always been this way… I like to move things around a bit, see what they look like when you put this over there, and that over here.  Move the sofa to the other side of the room, and the link list to a whole new spot on the blog.

The new template, the changes are just my way of welcoming a new year, and looking forward to Spring.

I didn’t realize how much I *needed* to look forward to Spring until tonight.  I need the hope and joy that come with the soft, new grass, and the eager daffodils.

I need the renewal that arrives with the baby birds, and their Mama-birds, eager to feed them.  I need to refresh my spirit and my soul with the rituals of Easter, and the delicate, shell-pink sunrises that creep up through frosty dawns.

I need these things now, because my Mom is continuing her descent through dementia.  I need the feeling of new life, of hope and of joy to counterbalance the sadness and despair.  I need a shot of fresh green leaves and tiny defiant blossoms to shore up my belief that life can, and will, go on.

So, here’s to new years, new beginnings, and pushing the furniture around.  Shake out the cobwebs, clear out the dustbunnies, and spruce up the ol’ blog. 

Spring *will* come again.

Around Midnight…

Around midnight, tonight, I will quietly open the front door, and step out onto the porch.

Because it is Christmas Eve, the world will be quiet, and still.  There is no traffic noise; everyone is snuggled in their beds, waiting for Santa.

The lights on the houses will sparkle up and down the block, winking and reminding us of our neighbors good cheer.

The warm, fragrant air from the house will spill out the open door, and circle around me, filled with the smells of Christmas:  Turkey, pies, cookies, and coffee. 

The breeze on my face will be cold, but the air will be fresh and sweet and pure.

The night sky will be dark; I won’t quite be able to make out the stars.  Maybe it is the light from the city below us in the valley… maybe it is the festive Christmas lights up and down the block.  But I will look for the Christmas star anyway – the ancient light that shone over one little crib, over two thousand years ago.

As I look toward the heavens, I will think of Mary & Joseph.  They were so tired and scared, and so far from home.

I will give a prayer of thanks for the sacrifice they made for all of us.  For the child that was not just theirs, but ours as well.

And I will give a prayer of thanks for you, my friends.  For those of you who walk beside me on this journey, and who know my own exhaustion, fear, and pain.  You are among my greatest gifts, this year and every year.

Merry Christmas, my friends.

"H" is for Hospice

Hospice.

I still can’t believe that we are there; at that point where the Doctor looked at me, and said “I think it’s time to call in Hospice”.

In my heart of hearts, I knew it was time.  Probably past time; we have been making heroic efforts to care for Mom on our own for a long time, and it was the catastrophic reaction that finally tipped the scales.

Imagine, if you can, trying to care for someone who is scared of her own poop.  Who is now scared *to* poop.  Because she just can’t understand it anymore.

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I ran into a friend of ours, just the week before, when I was out shopping.  She lost her husband nearly 5 years ago, and when she asked how my Mom was doing, I asked her who the Hospice group was that she had used.  Just in case.  I made a quick note in my iPhone with her answer, and after a few more minutes, we parted company.  
I was glad that I had that information, because the Hospice group that she had used with her hubby had been fantastic.  I remembered how, even in her grief, she had praised every one from that organization, telling us over and over how amazing they were.
So, when the Doctor asked me – do you have a Hospice organization in mind?  I had a ready answer.  And, so far, our Hospice team has been great.  They are so sweet and gentle with Mom, and they have been so patient with me, and all of my questions.
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Our Hospice is a non-profit, church-affiliated group that  takes anyone, regardless of insurance coverage or ability to pay.  
There is a 24/7 phone number I can call, if I need to ask a question, and Mom’s “team” is made up of two nurses, two aides, a social worker, and a chaplin.  Oh, and there is the DME guy, who delivers all of the medical equipment, and also the pharmacy delivery guy, who brings out all of her prescriptions.
We have gone from struggling through every day, to suddenly having an almost mind-boggling amount of help and support.  
I feel both relieved, and sad.  
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We have no way of knowing how much longer Mom has with us.  She was placed into Hospice on the basis of “failure to thrive”, with a diagnosis of dementia.
The “rule” for Medicare is that a Hospice patient is expected to live 6 months or less in order to qualify for Hospice.
However, both our Doctor and the Hospice Director told me that they personally know of patients who have lived *years* under Hospice care, so I am NOT going to assume anything regarding Mom’s time left.
We are just going to try and enjoy as much as we can with her, and love her every day that we have left.  
In the end, that’s what we should do with ALL of our loved one’s, right?
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