The Phantom And The Fashionista

Today was a bit of a challenge.

Wondergirl was off today due to a previous commitment, so I called another caregiver in as a temp to cover for her. We arranged for her to meet Sis at 8 a.m. to go over all the things that needed learning before she could be left on her own.

Then, on the way to work this morning, I received a phone call from Sis. No caregiver had shown up. I tried to call her, but no one answered and her phone was not taking messages. I called the person who had recommended both Wondergirl and this person to find out if she knew anything about where the phantom caregiver was, but got her recorder.

This was not good. The day was not starting well at all. Thank goodness I had already stopped at Starbuck's for coffee, or the morning might have been totally lost.

I called Sis and explained the situation. She agreed to stay with Mom until I could get there at around 1 p.m. since she also had to work today. I took half of a sick day, and we were in business.

On the way there I stopped and picked up chicken livers for Mom, sampling a couple on the way there to make sure they were fresh and of good quality. Mom is very picky about her chicken livers. Sis said Mom hadn't been able to eat anything for breakfast since she kept choking, but she seemed to handle small pieces of the chicken livers well. She ate about six of them before she said she was full.

Sis also told me she'd been having a struggle with Mom over her clothing today. Mom got dressed then wanted to change clothes a few times during the morning. That wouldn't be so bad if it wasn't such a struggle to move her, much less dress her. And Mom isn't the type to just let things go if you explain that it can't be done right then. She wants things done NOW. Things take on an exaggerated importance to her, and she doesn't stop talking about what she wants until she gets it - at least in the clothing department.

So Sis was understandably edgy when I got there today. Little did I know what was in store for me.

Mom decided it would be good to go to bed after she ate, so I loaded her up in the wheelchair and took her in the bedroom. After I got her settled in bed she started in.

"I want to take this robe off."

"But Mom, you don't have anything on under it."

"Yes I do. I have pajamas on."

"Nope. Just bare skin. Nekkid, bare skin."

"What's the matter with you?? Can't you see these pajamas???"

And so it went. She getting more and more mad because I wouldn't let her lie in bed with only her birthday suit on, me tearing my hair out because the empress had no clothes. Thankfully, the doorbell rang. It was one of Mom's best friends, come to visit.

Zora stayed for over an hour, God bless her. I don't know what she found to talk about in all that time, but talk she did. And as she was getting ready to leave, the Nekkid Talk started up again. Only this time I had reinforcements.

"Mom, you don't have any pajamas on under that robe."

"Yes I do!"

"No, you don't. And if you don't believe ME, let's ask Zora."

We asked Zora, and she confirmed the naked part. So that made it true. Gee, and here I was having so much fun lying to Mom about being naked. I'm so glad Zora could come along and tell her the TRUTH.

Sheesh.

After Zora left Mom started in on another kick. Now she wanted to change into another outfit. I asked her why, and she told me she had Bunco tonight and had to get dressed because Roberta would be picking her up soon. I explained that Bunco had been cancelled because tonight was Halloween and the girls wanted to be home to hand out candy to their grandchildren when they came over. Mom wasn't buying it, so we called Zora, who was home by that time. Zora talked to Mom and confirmed it, but unlike before, Mom didn't believe her.

I was about to be sunk.

I must have told her the same story twenty times, but she kept coming back with wanting to get dressed for Bunco. Finally I decided to compromise. I told her we'd put her Halloween sweatshirt on and wait to put the pants on until later. She agreed to do that, then complained that there were straight pins sticking her from the sweatshirt.

By then I was completely bald from pulling my hair out by the roots.

Her knee was hurting pretty badly about that time, so I gave her some pain medicine that helped her rest for a while. We both needed her to rest.

Have I mentioned lately that caregivers should be paid more?

All That Matters

Our current daytime caregiver, Wondergirl, has to leave at 4:45 p.m. for the next week or so to get to her second job. So for those few hours we're left alone with Mom.

Mostly I like to stay with her because I haven't seen her all day. Sis has usually been in and out - lately mostly in - so I enjoy having my time with her.

Last night we talked. She was lucid, and it was a very sweet time. We talked about how long she'd been ill, and she knew it was over four months. We talked about Dad and his visit. We talked about the love we had, me for her, and she for the entire family. She spoke of her appreciation for all we've done for her since the stroke. She thanked me, and through me, Sis, for taking such good care of her.

Somehow that makes me uncomfortable. She shouldn't have to thank us for doing what we do out of love for her. She is so worth every minute of time we put into this, every single one. To think that she has to thank us for our time and help when that's what she's given so freely to us all our lives seems ludicrous to me.

I told her she never had to thank us...never had to tell us we were appreciated. I told her we did it because of our love for her. Her answer was that she WANTED to thank us, because she wanted us to know that what we did was important to her. That it mattered. That she loved us.

As if we could ever forget.

Her whole life has been dedicated to loving us in one way or another. Yes, she drove me crazy at times. I did the same to her. Yes, we fought at times. But we always made up. No, our lives together have not always been a bed of roses.

But love is the one constant throughout it all. The love has always, always been there.

And in the end, that's all that matters.

Out-Of-Town Guests And A Couple Of New Faces

My cousin Jim and his wife Anna came to visit Mom yesterday. They got in late the night before after driving what Google Maps says is at least an almost eleven hour trip, and that's not counting traffic. They stayed the day with Mom, then left shortly after I got there for the trip home. Mom slept a good deal of the time they were there according to Sis, but she loved it that they came. She even refused to be moved to her bed, opting to stay on the couch all day so that she could be a part of things and visit when she was awake.

It was a good day for her.

Other friends also came to visit. My father even made an appearance.

During this, a sweet girl showed up for an interview. Her name is Charise, and she just graduated from CNA school last year. She is bright, friendly and caring, and we hired her on the spot to take over the day shift with Mom. She started this morning.

To let you know how much we like her, Sis left her with Mom and went grocery shopping. As she left, she overheard Charise talking to Mom via the baby monitors we have set up. Charise was offering to set Mom's hair in rollers after her bath and shampoo today.

I think I'm in love, and Sis thinks we should adopt her.

She wants to read to Mom. She wants to find activities Mom can do. She wants Mom to be able to look forward to the days she has left rather than waiting out her death. She gets along like gangbusters with the nighttime caregiver, and she understands the meds and the feeding tube.

We are blessed.

In other news, we also hired a weekend caregiver. She'll be with Mom Friday evening through Sunday at 8 p.m. We're hoping Marie works out as well as Charise. She has a lot of experience and has worked in the field for many years.

As you can tell from the photo above, Mom's hemoglobin is very low. She has no energy at all, and even when she wakes up from a nap she complains of being tired. It was difficult to get her from the couch to her bed last night because she dreaded what it would take out of her for her to move.

This morning she's had a bath and is having Cream of Wheat for breakfast along with her tube feeding. The bath was another energy drain, but necessary.

Someday I hope God explains the reason some people had to go through such trials in dying. I hope He lets us in on why we had to go through such pain in losing those we loved. I hope He tells us why it couldn't have been a joyous, uplifting experience instead.

Because really, I could go for a little joyous and uplifting right now.

It All Started With The Chicken

Yesterday when I walked in the door at Mom's, she and Sis were making chicken salad. Mom makes the best chicken salad in the known world, and there will be no argument from the readers, thankyouverymuch.

Mom got tired sitting there in the wheelchair, so Sis and I wheeled her into the living room and laid her down on the couch to rest. She fell asleep almost immediately.

Back in the kitchen, Sis continued to mix up the chicken salad. "Here," she said. "Taste this and see what's missing." I tasted. There was something not there, but I couldn't quite tell what it was. I added more pepper, more salt. Sis tasted it again and declared it needed more salt. I told her I'd just salted it.

We both decided it was time to wake Mom and give her a taste. One tiny bite, and she told us there wasn't enough lemon juice in it. The missing piece was added and it was Mom's chicken salad again.

Mom knew. And when we told her that she was right it made her smile.

So what do we do when she's gone? How do we figure out all these things that she knows by rote? How do we compress all that knowledge and love into whatever time she has left? How do we go on without her?

That's what caused me to have a major meltdown last night. I cried from the time I kissed her goodnight until I went to bed. And it was the ugly cry, my friends. An ugly version of the ugly cry.

Oh, don't get me wrong. I know people go through this every day. Some people have it much worse than we do. Some never get the chance to say goodbye, much less to care for their parent. I am so grateful for this time, any time, I have with her.

But how do people go through all this pain and survive? Sometimes I feel like I've been grieving for Mom for the past five months. There are times when I can push the pain away and be OK, but that's getting harder and harder to do as Mom gets nearer and nearer to going Home.

Before that happens plans need to be made. We have to find the dress she wants to wear. We need to talk with her about her desires, her wishes, her plans. We know she wants to rest next to her parents and sisters in another state. We know how she wants her name to read on the headstone.

And most importantly, we know beyond a shadow of a doubt how much she loves us. That's one piece of knowledge she's given us over and over again.

And we'll carry it with us always.

Could I Have A Rim Shot, Please?

Sis: We really do need to put a calendar up for Mom's schedule. Didn't you say something about Hospice sending someone in to give her a bath tomorrow?

Me: No, that's Thursday.

Sis: Oh, that's right. And the chaplain is coming on Friday.

Me: Right.

Sis: So I guess you could say that cleanliness is next to godliness then, huh?

ba-da-bum.....

Roberta, Where Are You???

When Mom first had her stroke, a friend of hers named Roberta gave her a little carmel and white Beanie Baby-type dog to hold in her left hand to keep it from drawing up.

Mom promptly named it Roberta.

Somewhere along the way Roberta got lost. But wonder of wonders, a new Roberta took her place. And she begat another Roberta that was carmel and white with a black saddle, and yet another Roberta who was totally carmel.

So now we have Roberta #1, Roberta #2, and Roberta #3.

Only now Roberta #1 is lost again.

We have the rehab center searching for her, and if she's found one of us will drive up and get her. Mom can't be without all three, because Mom thinks there are actually four. It's concerning her greatly that now TWO Robertas are gone. If necessary, we may have to purchase the third Roberta #1 and perhaps even a fourth Roberta #1 just to ease Mom's mind.

In other news, Hospice had to place the dreaded "beaver tail" in Mom on Sunday. That's Mom's term for a catheter, something she despises. However, there were many fluids going into her and none coming out, so something had to be done.

And...

Today I had to let her daily caregiver go. Debbie was sweet to Mom, but wanted to do things her way instead of our way. She got there late both days, could never seem to get the hang of the medications (which really scared us), and the feeding tube seemed to be pretty much beyond her. And Mom didn't care for her.

She wanted to go home when I got there yesterday at 4 p.m. even though she was scheduled to be there until 7 p.m. Then she asked Sis if she could go home this morning for the day because she had cramps.

That pretty much clinched it for me. I asked Sis to tell her she was no longer needed, to pay her and wish her well. Sis, the stinker that she is, handed the phone to her and made ME fire her. Which I did in the sweetest, kindest way I knew how.

If there is such a thing.

So, we're looking again for a daytime caregiver. We have an interview set up for tonight, and if she doesn't show I'll be on the horn to more people and even agencies to get Mom covered. Because we really don't care how much it costs, just so long as she's well-taken care of and happy.

Oh, and has Roberta #1, too.

The Gift

This past weekend was hard.

I knew caregivers worked hard to tend to the needs of their clients, but I had no idea how hard.

I do now.

Mom has become noticeably weaker and more pale even since we moved her home. Yesterday, after a sleepless night on Saturday due to pain in her leg and foot, the doctor prescribed Oxycodone for her. I gave her 5 mg at 6:15 p.m., but that didn't touch her pain, so I gave her another 5 mg at 7 p.m. The caregiver reported that she was able to sleep comfortably through the night. I was so happy to hear that, because the one thing we want is for her to be pain-free in all of this.

The other thing we wanted is for her not to be afraid. Unfortunately, that isn't going to happen.

Mom overheard some of the Hospice people say the word "Hospice" while they were here. She didn't say anything to us, but told The Boy that people had better hurry up if they were going to see her "because it wasn't long before she'd be six feet under." After we heard that we decided it was time to shoot the elephant in the room that no one was talking about so that we could all handle things as best we could.

Sis and I went into her room and asked her if she knew what the word Hospice meant. She said she did. She said it was for people that didn't have long to live. We asked if she'd overheard anyone use that word, and she told us she had, and that it scared her.

We explained to her that Doc thought she probably had less than six months to live, so we thought it would be a good idea to bring her home rather than having her in a nursing home or rehab center or hospital. She agreed, and was glad we'd made that decision.

Then we asked her the hard question.

We wanted to know if she wanted us to pursue additional medical care if she needed another transfusion. Did she want to go back to the hospital again? Did she want any extraordinary measures taken to prolong her life?

She thought for a moment, and then told us no. No more hospitals. No more transfusions. No more pain. She was through. Enough was enough.

In that moment she gave us the greatest gift she could have ever given us. She made that decision, taking it off of our shoulders. Now when the time comes there will be no guilt, no wondering "What if?" We'll know it was her choice.

And what a gift it is!

Home Sweet Home

Mom is home.

And those words are bittersweet indeed.

It's so good to have her in the place where she belongs, for however long that is. I can't help but think she has some idea of what's going on, but it's like the proverbial elephant in the room that no one wants to talk about even though we know it's there.

With the social worker and the nurse coming in today and a slip that I tried to cover, she had to have heard the word Hospice at least ten times. Whether she put two and two together is anyone's guess, so we'll play along as if she hasn't. The next move is hers.

Sis and I had hoped to take her by Panera on the way home to celebrate the happy birthdays she keeps wishing us. But when the aide at the rehab center had trouble transfering her to the car because her good leg gave out we decided against it. We just don't have the skills to transfer her from the wheelchair to the car and back without risking bodily injury to both of us.

It was a sad realization.

After we arrived home, Hubster and The Boy assisted us as we got her into the wheelchair and carted her up the steps to her door. Once she was inside it was as if we had climbed Mount Olympus. Sis and I high-fived each other and set about unpacking the accumulation of almost five months.

The social worker came and left, and we settled Mom in her room for a nap. The Hospice nurse came and went over the feeding tube with us, along with schedules and medications. Sis left for a while to do some shopping and pick up prescriptions, and when she got back we got ambitious and transferred Mom to the couch in the living room so she could watch her beloved Hallmark channel - the one channel neither the hospital nor the rehab center have, and the one she's missed the most these past months.

She fell asleep on the couch, happy.

Sis left, and I stayed to wait for Evonne. She showed up early to meet Mom while she was still awake. Mom seemed to like her, and I was relieved. I went over all the medications, schedules, quirks, and everything else I could think of before I left, but just like a new mother, I'm worried about what will happen tonight.

Will she sleep through the night? Will she be afraid or confused when she wakes up at home? She didn't want me to leave tonight. Should I have stayed this first night?

Again, as always, I'm leaving it up to God to handle. He can take the night watch.

I'm going to bed.

Gotcha Covered

Last night Sis and I interviewed and hired a woman that we believe will take good care of Mom.

Her name is Evonne. During the day she's a mild-mannered grandmother of three who gets her grandchildren off the bus, fixes them dinner and helps with their homework before her single-mom daughter picks them up at 6:30 p.m. Immediately after that she will be winging her way to Mom's house to spend the entire night and part of the morning with her. She's working 7 p.m. to 7 a.m. or a little later, depending on who I can find today to fill in the daytime slot.

Evonne's friend decided she didn't want the job.

Yes, I know Mom's coming home TOMORROW. Yes, I know I need to have someone lined up to take care of her TOMORROW.

We're doing a lot of praying on this end, and thanking God it's the weekend and I can be the caregiver until Monday during the day if everything goes to heck in a handbasket.

Oh yes.

We pick Mom up from rehab tomorrow at 10 a.m., which means after All The Packing and All The Signing of All The Paperwork we should be home around noon. The Hospice nurse will meet us there, along with as much of the rest of the family as can be there. It may be a trick to get Mom up the hill to her door even with the wheelchair, so we'll need some good, strong men to help.

I just hope it doesn't rain.

After the interview last night we waited around for the equipment to be delivered. Finally, at 8:30 p.m. the truck showed up. He unloaded a hospital bed, side table, oxygen tank, oxygen machine, commode and wheelchair and set everything up. He explained how everything worked and told me if I had any questions to refer to the manual he left for me.

Thank goodness for the manual. I was so tired when he left I think I only absorbed about half of what he said. I still don't know where to plug in that commode....

So today I'm waiting for calls from two different people who may or may not want to take care of Mom. I'm praying God will provide the best person(s) for her, and I'm believing He will. And if all else fails, I'll take time off on the Family Leave Act and take care of her myself and let her pay me what she'd pay a caregiver so my family can continue to do silly things like have electricity and eat.

So any way it goes, Mom, we've got you covered.

Trying To Make Scents Of It All

Last night it was raining hard as I pulled into the driveway at Mom's house.

I had with me all the makings of a chili dinner. My plan was to make chili, strip the bed in her room, send The Boy downstairs for a hot shower after his last football game of the season, eat dinner, and have The Boy and Hubster move the bed out of her bedroom to make way for the hospital bed and other things that will be delivered tonight.

But it didn't quite work out that way. I didn't count on Hubster and his feelings in the whole matter.

You see, Mom was always one for having us over for dinner. She'd make a big pot of steak soup or a roast or pork chops or chicken pot pie or ...you name it, and then invite our family over to devour it. There would be more vegetables than you could shake a stick at, and more than likely a homemade pie.

Mom was always famous for her pies.

But since the stroke there haven't been any of those family meals at her house. Unless, of course, you count the family that comes in from out of town and fixes their own meals when they stay there.

So Hubster was sad. He just wanted to get the bed moved and go home. He didn't want to stay in the house any longer than necessary, because it just wasn't a home without her there.

I couldn't agree more.

We got the bed stripped and moved into another room until the rain let up and we could move it down to the basement. And I have to tell you, the first look I got at her bedroom without the bed in it made things a lot more real for me than they've been up until now.

We're actually doing this. She's coming home.

Have I changed my mind about it? No. Because I still believe it's what is best for Mom. What she would want, if she could logically make the choice. Will I change my mind later?

I hope not.

Tonight we'll be interviewing people who want to take care of Mom. We need someone there 'round-the-clock to make sure she's comfortable and safe, to be sure she gets turned and gets cleaned and gets her medications. We're hoping to find the best people we can for the job, because she deserves the best.

Before I left the house last night I took a moment and buried my head inside the clothes in her closet. Just to try to smell the smell that was Mom before the stroke, before all this hell began.

Of course, after four-and-a-half months, it was gone.

This growing up stuff isn't all it's cracked up to be.

Perhaps With Roller Skates

Yesterday was Mom's final transfusion. And, true to form, the hospital was a veritable study in ineptitude.

Mom arrived at 6:45 a.m. to be met by a very sleepy Sis who had her coffee in hand. They were taken up to Mom's room, an IV was started, and the wait began.

A FOUR-HOUR WAIT. For the first of two pints of blood. Sheesh.

And while all of this was going on, Mom was having the runs like crazy. Some of it was due to the tube feeding. Much of it was due to the internal bleeding. Sis said she couldn't help but think Mom was pooping out as much blood as she was getting added.

During one of the times Mom was being cleaned up Sis and I walked out of her room and had a discussion about her upcoming move home. Sis was having trouble with the whole letting-her-go rather than continuing to give her transfusion after transfusion. She asked me how I could do it. I explained to her that I considered it similar to a war. Every time we've gone into battle we've lost ground. Mom isn't getting better, but seems to be getting worse. The transfusions are more and more frequent, even though she isn't on any blood thinners. I think rather than making her miserable by fighting all the way to the bitter end, we just surrender and let her live out her time in relative happiness and peace in her own home.

Besides, I told her, we know we'll see Mom again. This isn't forever. And Sis' answer to that?

Through tears, "Perhaps with roller skates."

It was obvious the strain of it all had gotten to her.

"What?" I said, after I closed my mouth and stopped gaping at her.

"Perhaps with roller skates." she answered. "Mom could never have roller skates or learn to ride a bike because there were no paved roads or sidewalks where she grew up. So maybe when we get to Heaven and see her, she'll be wearing roller skates."

Maybe so, Sis. Maybe so.

One Last Time

Today Mom's hemoglobin came in at 6.0.

We have an appointment to meet with Hospice this afternoon at Mom's house at 4:30 p.m. Unfortunately, unless we transfuse her one more time, the likelihood of her making it home or being able to enjoy it once she gets there is very small.

The last time she received blood was the 14th of this month. Only a week ago.

So we decided to transfuse her one last time. One last fill-up, to give us time to get her home ready to receive her. Time to make all the arrangements necessary for 24-hour care, equipment, and scheduling.

I'll be sending out an email to her family and friends after we meet with Hospice to let them know how things will happen, to give them time to come in and visit with her. Time to make her remaining days as happy as they can be.

And I hope they will come, because those visits have become the joy of her life.

She told me yesterday that she wanted to get a big-screen television when she got home. I asked her why, and she told me that maybe people would come to the house to see her if she had something like that to draw them there.

As if she wasn't enough. As if people wouldn't want to come to see "just" her. She always did sell herself short.

So over the next few weeks we'll try to make her as comfortable and as happy as we can. No matter how much time it takes, no matter how much it costs.

Because she's more than enough. She deserves the best.

Do Not Pass Go, Do Not Collect $32,000

Mom has been unable to let go of the idea that she has won the lottery. She can't understand why we haven't been more excited about it, and why we haven't bothered to collect her winnings from the local SunFresh grocery store.

One reason would be the fact that the "ticket" she gave Sis to take to the store was, in actuality, her ID bracelet from the hospital.

We didn't want to lie to her or to tell her the truth and hurt her feelings, so we've just been telling her that we haven't had a chance to check things out yet. We hoped she'd just let it drop, but that hasn't been the case. She asks about it every day.

She'd decided that she was going to build a new house with the money, then pay for college educations for all five grandchildren, and split the remainder between Sis and me so that we could pay off all of our bills.

Quite a feat for $32,000. Especially after taxes.

So today when she brought it up I decided to break the news to her that the numbers didn't match on the ticket. There would be no prize.

She took it surprisingly well. She was a little down and dejected about it, yes, but we didn't dwell on it. We talked mostly about all the good things she's done for her grandchildren. How she spoiled them, how she loved on them, and how she didn't need to provide their education to them on a silver platter - that they needed to work for it to appreciate it more.

We also spoke about her going home for good. She has only about three weeks left in the rehab center that will be covered by Medicare and her tie-in insurance. However, since her hemoglobin was 8.3 both Thursday and Friday, there is a chance it has dropped further over the weekend. They'll be testing her hemoglobin again tomorrow, and if it's dropped much lower we need to get her home.

She told me today that she doesn't want the tube feedings anymore. We'll have to talk with Doc about that as well as the Hospice people. The feedings cause her to have the runs, which means she has to be cleaned up more frequently, which is humiliating for her. I flat out told her that if she didn't have the tube feedings she would likely die of starvation, and that didn't seem to phase her much at all.

She talked today about how much she misses her family. Not the family that's alive and well here around her, but the family that has already gone to be with the Lord. Her five sisters, her parents, the other people she loved and wants to see again.

I think she's winding down. Realizing, without admitting, that her time on earth could be short. Telling us in her own way that she's ready.

And that is somehow comforting for me to hear.

It Will Be Alright. It's Going To Get Better. This Won't Last Forever.

Yesterday I went to visit Mom for the first time since returning from Arkansas.

She was in bed and being fed through her tube when I went in, and she'd been crying. She told me she missed me so much while I was gone because she gets very lonely when no one is there with her. Even though she'd had more visitors in the time I'd been gone since she'd had when I was there.

And she wept even more.

Then she went through her litany of delusions. How Sis was sitting over there and wouldn't wake up no matter how loud she yelled. (Sis was not there.) How Dad wouldn't wake up either, even though he was next to her in the bed. (Obviously untrue.) How both her doctors had been in a car wreck and were in therapy with her yesterday. How she couldn't understand why we weren't more excited about winning the lottery and why we hadn't cashed in the ticket yet. How people who hadn't been there had been there, and about how much pain she was in.

Then I tried to talk to her about other things. I told her about my trip, about the funeral, the flowers, the music. When I started to talk to her about how my aunt's death hurt so very much, she started her litany over again.

I think it was then I realized that this person is no longer anything like the mother I knew and loved.

It's not that I don't love her still - I most definitely do. But the mother I knew would comfort me through her pain. And I think that's what I miss the most.

Mom telling me everything's going to be alright. Everything's going to get better. That this won't last forever.

I know, I know. I'm whining and I'm selfish about the whole thing. It should be all about Mom. But I've been depressed and teary-eyed the whole week, even at work. I won't lie - it's been very rough.

During one of her more lucid moments she looked at me and said, "I don't want to live like this. I can't do anything anymore. I can't cook, I can't play with the grandchildren, I can't drive, I can't walk, I can't even get out of bed by myself. I have to be cleaned up because I can't even use the bathroom by myself, and that's humiliating. I don't want to live this way."

And then she went back to the crazy.

Today Sis and I handled some banking issues for Mom, then went to see what was in her safety deposit box. There were the normal Certificates of Deposit, IRAs, annuities, birth certificates, marriage license, papers on the house, etc. But there was something else as well.

There were signed and addressed cards and gifts for the remaining three grandchildren who have not yet graduated from high school, waiting and ready for them. All three of them. One will graduate in May, one in 2010, and one in 2012.

And I cried again.

After the banking we went to her house and cleaned out the freezer. We split up everything as evenly as we could, leaving some of it for later. Even at that we both have enough food to feed our families for at least the next three months without ever leaving the house.

Even when she's disabled she's still providing for her family.

The canned goods will be next. We figure we can pretty much go at it week by week and get most of the house closed down except for what she needs while she's there. I have a call in to Hospice for a Monday meeting, and I'm sure we'll be talking with Doc again about what to expect and when.

Letting go is hard. It hurts your heart.

But it will be alright. It's going to get better. This won't last forever.

Losing Ground

Mom is still bleeding.

I've been out of town for a few days to attend the funeral of a dear aunt. Yesterday was my first day back. Since it was Thursday and Sis usually goes to see Mom on Thursdays at the rehab center, I did something I can't remember doing in a long, long time.

I went to the grocery store.

We were out of everything, and I didn't even get all we really needed, but it will tide us over for a while. That and the dinners the church and good friends have been so kind to provide us should keep us eating.

When I got back there was a message from Sis. Mom's blood count has gone down from over 9 when she was released from the hospital Tuesday to just over 8 now. If she keeps going at this rate, she'll bleed out in less than two weeks.

I'm not ready. I can't handle that now. I need time. Time to adjust to the reality of what's happening. Time to get things ready for her at home. Time to talk to Hospice and to accept the inevitability of it all.

It's too soon.

Not that there would ever be a good time. But now isn't it.

So we'll wait a while until things can settle down. We'll get Hospice involved, and we'll keep her comfortable while we get the house ready. If she gets to the point where she needs it, we'll give her another transfusion. We'll talk to our pastors and get their opinion.

And eventually, we'll let her go.

Enough Is Enough

Today Sis and I spoke with Doc about letting Mom come home. Not just for a visit, but permanently.

But Doc doesn't seem ready to give up the fight yet.

He realizes she can no longer be on blood thinners. He also realizes that without blood thinners she will have clots. And so he talked us and Mom into putting a filter into her vein to stop the clot(s) from her leg from reaching her lungs.

Another procedure that she would not want if she were in her right mind. Another procedure that will cause more pain.

Yes, I should have spoken up and told him no. I should have said "ENOUGH!" But I didn't. And so she will have the procedure today, because she agreed to it.

But the blood thinners will stop. Permanently.

Mom will return to the rehab center for a period of time while we make arrangements with Hospice for her to come home. We have no idea how long she will last once she does come home, but we know this: She will be where she wants to be, with the people around her she loves and who love her.

We'll be meeting with Hospice either today or later this week to make arrangements. Prayers for peace over us as we deal with our decision and peace for Mom would be appreciated.

Because enough is enough.

A Short-Lived Stay

Mom is back in the hospital again.

I know, you thought she was just discharged last Thursday. She was. However, she was discharged on Coumadin. And we all know what that means.

An ambulance brought her back today due to bright red blood mixed with her stool. She was bleeding out again from her intestinal tract. Even with a transfusion just before she left the hospital on Thursday, her hemoglobin was at 7 today.

They gave her more blood and topped it off with plasma. She's been in pain due to her legs and feet cramping up. Her dementia is still bad - worse than it's been. They stopped the Coumadin in order to stop the bleeding.

For now.

Sis and I have some difficult decisions to make in the next few days.

I'm praying we're up to the task.

Meanwhile, Back At The Ranch...

Mom is now back at the rehab center.

She had a booster of packed red blood cells before she left the hospital, and hopefully that will last a while. Her hemoglobin was down to 8.7 when they decided to give this to her. She looks tired. She's worn out and weak from the hospital stay.

Until the nutritionist at the rehab center comes in to evaluate her she will be on 24-hour tube feedings. They hope to give bolus feedings during the day so that she'll be able to participate in rehab, then put her back on the feeding pump at night for extra nutrition. In the meantime, the speech therapist will be working with her in an attempt to regain her capability to swallow.

Now we have to figure out what the next step is. Do we leave her on the blood thinners knowing she'll bleed out and have to have transfusions time after time, or do we stop the blood thinners and risk another huge clot? Where do we put her when her now 38 days run out?

These are all questions Sis and I will have to discuss with Mom. We need for this whole situation to be settled...not so up in the air all the time. We need to know what to expect and when. We need to know Mom is getting the best care possible, wherever that is.

And we hope the answers come soon.

And So We Begin Again

Mom was supposed to get out of the hospital today.

I say "supposed to" because there was another glitch. Her blood count is down to a little over 8 from over 10 yesterday.

Sigh.

What this means is she'll likely have to have another transfusion in the next day or so. Her leg is still bothering her and is very swollen, so we know the clot hasn't dissolved. Not that we'd expect it to in such a short time.

It would just be nice if she could catch a break once in a while.

You Can't Win If You Don't Play

Mom has apparently won the lottery.

She told us so today.

She said she's been praying and praying for a way to pay for college for all five grandchildren, and today when she checked her ticket against the numbers in the newspaper, it happened. She couldn't believe it, so she checked it twice.

She won $32,000. Enough to pay for all the grandchildren's education, she said.

I only wish it was true.

Not only that she won the lottery, but that $32,000 would pay for all five to go all the way through school. She even wanted to pay off DIL's medical school bills, but didn't think she had enough for that.

Mom is a giver, and that's for certain. Even in her present state she thinks of everyone but herself. Even in her dreams.

She'll be released from the hospital tomorrow after almost eleven days' stay this time. Her feeding is going well and her pain is under control. The clot is still a danger, but she'll be on blood thinners until it doesn't pose such a threat. We can only hope and pray she doesn't have to come back to the hospital for more transfusions until the clot is history, but we know that's unlikely.

We're not exactly sure how much more time she has in rehab before she has to go on Medicare's Part B. We'll have to check with the rehab center to see. Right now we don't have a place for her other than the nursing home attached to the rehab center. While that is an option, it is also at least a twenty minute drive. That may not seem like it's so far away, but it really gets tiresome day after day.

I'll be looking at another place closer to home this week. I spoke with the social worker there today, and now all I have to do is find the time to go there. Sis is more inclined to leave Mom where she is so that she can work with the same doctors and therapists she's become used to. However, winter is coming. I'd feel better if we had Mom closer to home. It's something we need to decide together soon.

The main thing is that Mom is very well cared for and as happy as she can be in the situation and place where she lives. We can work out all the rest of it as it comes.

Watching And Waiting

I've been worried about Mom all day.

The tube is working well and they have begun feeding her through it, but she's having a hard time tolerating the pain she feels from the procedure to put it in. Since her pain tolerance is zero, even a little puts her over the top. The nurses have been good about pain meds, but understandably don't want to use them too much. Morphine can cause constipation, yet without it her blood pressure rises due to the pain. It's a fine line to walk.

Possibly because of the morphine or the dilantin or a host of other reasons, Mom has been having problems with strange dreams. She wakes up in the middle of them, thinking they're real. She's also having problems with repeating the same thing over and over and over. It's as if she gets stuck on a thought, like a scratch on a record, and can't get past it.

That last remark was for those of you who actually REMEMBER records and record players.

She also has a place on her lip that has caused her whole lower lip to swell to about twice the normal size. It was thought she might be allergic to some medication she was getting, so the doctor prescribed Benedryl for her.

It was a gift from God.

It did nothing for the swelling, but it knocked her out enough to where she could sleep. When we left at 10 p.m. she was out like a light, and had been for several hours.

Why were we there so late? Because we had other news today as well.

Mom has a blood clot.

Her left leg has been swelling abnormally. We mentioned it to the nurses a couple of times, but they always said it was because she wasn't getting good circulation due to being in bed all the time. They put the "squeezy thingies" on her legs to encourage circulation and left it at that. Yesterday I brought it to their attention again because the squeezy thingies were so tight on her left leg. It had swollen more. They removed the squeezy thingies to let her legs rest for a while, and put them back on later.

Then today the physical therapist came in. She was moving Mom's legs to keep them from stiffening up, and commented on the size of her left leg. She got the nurse to look at it and they both poked around it for a while. The nurse called Doc, who ordered a sonogram of the leg, and the clot was found.

It's in her thigh, and it's huge. It's long. Sis was there for the sonogram and told me it reached at least half of her thigh and maybe more. She now has to have blood thinners to let the blood in her leg circulate, which brings us full circle. If she has blood thinners she has gastric bleeds. If she doesn't, she has clots. Clots are life-threatening. Bleeding is life-threatening.

In other words, we're damned if we do and damned if we don't.

In the meantime, there's always a chance that part of the clot will break off and cause even more problems. So because I was worried, I went back to the hospital around 5:30 p.m., and Sis and I stayed there together until 10 p.m.

We trust that she's in His care, no matter what happens.

He can take the night watch. We'll be back tomorrow.

The IV League

Oh yes.

The title is courtesy of Sis, because that's what she spouted when she found out Mom now has two new IVs in her right arm rather than one in each arm. I was leaning toward "Because God Made The IV Line" (think old songs) but I'll save that one for later.

Because I'm sure we'll need it.

Mom's feeding tube is now in place. They are testing it today with water, and will begin feedings tomorrow, gradually building up the amount she gets hour by hour. Unfortunately, the GI department didn't call her down to have it put in until noon, then we had to wait even longer for them to take her back and actually do the procedure. I offered to stay today since Sis has missed more work than I have, so she wasn't there when we got back to the room around 3 p.m. She came by after work, after I'd already seen and gotten used to the look of the site and the tube.

When Sis first got a look at it, she said something akin to "Gee Mom, it looks like you're inflatable now..."

We were having one of those days.

Sis and I laugh. It's really what we do best together, other than take care of Mom. And we laugh at inside jokes, at quirks we both have, and with Mom. She's where we got our sense of humor.

As the nurse was working with Mom and listening to us giggle tonight, she told us how close she is with her sister. How they finish each other's sentences, how they are each other's best friend, how they can blow off steam with each other, how they love to do things together. Sis and I looked at each other and laughed some more.

"Yeah, NOT us at ALL," I said.

Thankfully, the nurse didn't take offense or order enemas for both of us. Although, come to think of it, it might have been funnier if she had.

She didn't realize how very different the two of us are. I like to think she couldn't see the differences because we work so well TOGETHER taking care of Mom. We both have the same heart in that regard. We both love Mom and want the best possible for her in all things.

And in my book, that makes us IV League as well.

A Hard Day's Night

Mom had a hard time sleeping last night because they chose the nighttime to run potassium again. If you've ever had potassium through an IV or know anyone who has, you know it stings like crazy the whole time it's going in, unless it goes in a PICC line. Since Mom doesn't have one of those this time, she got very little rest.

And since she got very little rest, she made up for it today.

She had a bad headache today along with various other aches, so the nurse was kind enough to give her some pain medicine. It worked so well that she slept until around 5 p.m., then woke up with the headache still there. More pain meds, and she was out until after I left the hospital.

Since she did not have the feeding tube placed today it will be placed early tomorrow morning. At least we hope it will be early, so Sis and I can see her through it before we go to work and then check in on her later. That will mean showing up at the crack of dawn to wait to be called.

Fun times.

At least Mom will be able to get nutrition instead of the PPN she's getting now. The poor woman has an IV in each arm, and it's hard for her to do much of anything without getting tangled up in tubing.

The neurologist said it may be a day or so before they try it out for medications and another day before they try it out for feeding. It will depend on what the GI doctor says. We're hoping everything will be smooth sailing and there will be no worries.

It would be a nice change of pace.

Down The Tube

Mom is having a feeding tube inserted tomorrow.

Doc talked with her about it, but she didn't seem too keen on the idea. Then the GI doctor came in while one of her friends was there visiting. He explained the procedure and told her it would not be as painful as the carotid surgery was. When she still balked at the idea, her friend stepped in and told her she had to do it because she'd starve to death otherwise.

So Mom agreed. It was as simple as that.

The neurologist stopped in this afternoon while Sis and I were both there. The MRI came back and we were extremely happy to hear that she did NOT suffer her second stroke. It seems the problems she's been having with staying awake are due to the anti-seizure medication, which was too highly concentrated in her body. The medication was stopped for today and they will do another test tomorrow to see what the level is before they begin it again at a lower dosage. He also seemed confident that she would be able to re-learn how to swallow, and that the feeding tube would be temporary.

I wish I was that confident.

The medication is also one of the reasons she has been so wacky lately, other than the fact that she's just getting over two seizures. The dementia is much worse than before. Today she was worried about not having dinner ready for her Bunco group tonight, and had to be told over and over that it was being taken care of by someone else. She had bread in the oven that needed taking out. She cooked a roast beef dinner, but didn't have time to make hot rolls. And she was bound and determined that there was a pair of scissors in her bed that I could use to cut off her identification wristband.

She is very restless, pulling her covers off almost as soon as they're straightened. Then she complains she's cold, so the covers are put on again. Then she complains she's hot, so off they come. It's an endless cycle. She wants things moved to the closet, then wants them back on the shelf. She keeps trying to remove the protective padding over the rails on her bed until she is told why it's there. Then she leaves it alone until the next round.

My hopes are not high that this part will improve. We've been disappointed in this area too many times for me to hope again, so I'll just accept what comes along.

Hi, My Name Is Laura, And This Is My Other Sister Laura

It was not a good day or evening at the hospital.

Sis was with Mom most of the day while I was at work. Mom, however, was still in the mostly-asleep-only-sometimes-awake mode she's been in the past couple of days. She's not talking in her sleep as much, but she is still very, very confused.

I walked in tonight to take over from Sis and told Mom I loved her as I bent to give her a kiss. She grabbed my hand and in a very plain voice, said, "I love you, too, Laura."

It hit me off-guard, that one did. Somehow I always thought she'd know ME, her firstborn. ME, the one she could always count on for help. ME, the one who would fight her battles with utility companies and slay her dragons. After all, it was ME.

Not Laura. I don't even know who Laura is. Neither does she.

And then she turned to Sis. I asked her who Sis was, and she answered the same way, "Laura." Apparently Sis and I are now twins in that we're both named Laura.

Sis went home after we spoke about doctors and such, and promised to come back up later so I could get home at a reasonable hour. After she left, the neurologist came in. I explained to him that Mom was asleep much of the time still, and her confusion seemed to be worse than it ever had. I told him about her talking in her sleep, the random thoughts out of nowhere, the fact that she didn't recognize me or Sis earlier. He said it was very unusual for the anti-seizure medication to cause those symptoms this far out from the seizure, and he suspected there might have been another stroke.

Just what we needed to hear.

He ordered an MRI, but it hadn't been done as of the time I left. If it is another stroke, plans for her recovery will change. As of today she failed another swallow test as well as a video swallow test, so we know that there will be long-term consequences from that. Whether she will have to have a feeding tube inserted or whether she will be able to learn to swallow again is up in the air. With her mental status as it is now, learning to swallow again is unlikely.

In the meantime, the hunt for nursing homes is on again. I made another visit to the one I was at first impressed with over the weekend, and found it to be lacking in a big way. Another I will look at is full and has a waiting list. The one attached to the rehab center will likely be where she goes following this hospital stay, as we don't think she'll qualify for rehab anymore.

My mother, the person I knew and loved before the stroke, would rather die than be the person she is today. My mother, the person I know and love today, still wants to live.

How do I reconcile the two?

Back To The ER, Back To The ER, Back To The ER Again

Yesterday I received a call at 6:30 a.m. It was the rehab center.

Mom had suffered a seizure while they were getting her dressed for breakfast. They'd called an ambulance and were taking her to the hospital. I called Sis, got dressed and headed to the ER.

It's become a too familiar place for us to be.

Half an hour later the ambulance showed up. We met it, assured Mom we were there and that we loved her, and left the experts to their work.

But things were different this time.

It took a much longer time than usual for anyone to let us know what was going on, and when they did they told us the doctor would meet us in the waiting room. That's never happened before. We've always met the doctor back in the ER after the initial look-over. We were worried.

Eventually the doctor came out and spoke with us. It seemed Mom had suffered another seizure when she arrived at the ER, and they were getting her stabilized. It would be a few more minutes before we were allowed back.

When we were finally allowed to see her, she had been given anti-seizure drugs and was completely out of it. She remained that way for the rest of the day, except for telling us she hurt in various places. Her legs kept cramping up, and her back hurt most of the day. The doctor prescribed morphine for her pain and we let her sleep.

Today she was more awake. They found her potassium was extremely low, so she was started on that. They ran tests, including an EEG and a swallow test. She failed the swallow test miserably, choking on applesauce. She is not allowed to have anything by mouth until she is more alert and can be tested again, hopefully with better results.

In the meantime, her blood pressure is very high, tonight reading at 174/104. Scary numbers. She's doing a lot of talking in her sleep about strange things. I don't know if the drugs are causing it or if it's something else, but I really don't know anyone named Cassandra and I haven't been invited to her coming-out party, so I don't believe I have to buy her a gift even if Mom thinks so. And I think we can wait to buy the Easter baskets until closer to Easter.

So we're back at the hospital for an undetermined length of stay.

Last night was another Every So Often Bawl, and I don't mean we danced. Sis and I are getting to the point where a breakdown is almost a certainty, whether it's one like I had last night or one of the nervous breakdown variety. Mom is so precious to us, yet we hate to see this happen to her day after day, time after time.

We want Mom to be free of all this pain, all this seemingly unnecessary suffering she's going through. But God knows better than we do what is best, so we'll trust His judgement and keep on keeping on.

Room 413 And Lionel, Who Isn't A Train

Mom is back at the rehab center, safely ensconced in room 413. Room 413 is old hat to us. It's a private room they use for patients with communicable disease. In Mom's case, C Diff.

They've hired a new aide in our absence, one we know will do a wonderful job. His name is Lionel, and he's the epitome of what you want an aide to be. He is polite, courteous and gentle, yet strong enough to handle Mom's weakness. He took care of her last night, her first night back.

When I arrived at the rehab center after work today I was greeted as I am almost every day nowadays by Mom. Not with "Hi! I'm so glad you're here!" or "Where've you been? I've been waiting for you all day!" but with "My butt hurts." And not once, but at least fifteen times before I suggested we go back to her room and put her to bed. It seemed to be all she could focus on.

So we had a talk. Because Sis and I have become extremely weary of the dead horse Mom beats over and over and over again.

I reminded her of all the migraines she used to have and how she never let out a peep. About the horrible cramps she had every month that she never complained about. And I told her she needed to come up with some of that strength now, to try to stop telling us so much about her bottom woes. I told her there was nothing on earth we could do to make it better for her, and hearing her constant moaning and repeating of how much her behind hurt was hurting us since we were so helpless to help her. I reminded her that when the aide came in to get her ready for bed he had cleaned her up and she hadn't complained at all, so I knew she could do it.

The nurses have told us that when we aren't there she does just fine. But let us show up, and the floodgates of complaining open and open wide. It's kind of like a little child playing one parent against the other in a way. Except in this case, Sis and I are up to here (lifting hand above head) with it.

Lionel caught on right away. Mom tried the complaining with him, but got nowhere. He asked her if all the complaining made her feel any better. She told him no, it didn't. So he asked her why she was still doing it.

He said she quit right after that.

God bless Lionel. He can run on my track any time.

Counting Chickens Is Not Such A Good Idea

Mom was NOT released from the hospital today. Instead, she was given two more pints of blood.

It seems as though her hemoglobin dropped to 8.5. The same hemoglobin that supposedly was remaining stable at over 10. Which meant that even though all the blood thinners had been stopped, she was still bleeding internally.

Sis and I determined we were going to have to talk her into having the colonoscopy. The previous test they'd done showed the bleeding was coming from somewhere below her ribcage. She was refusing the colonoscopy due to the prep and all of the cleanup her already raw bottom would have to take. Then a helpful nurse suggested something called a rectal tube.

Supposedly this tube could be inserted to catch the output and save Mom from the cleanup problems. While it might be a bit uncomfortable, it would keep her skin from further damage, and that's what she worried most about.

I reasoned with her. I explained we didn't want to have to keep taking her back to the hospital and exposing her to C Diff every other week if we didn't have to. I wheedled a little. I bargained. I cajoled. And I almost had her talked into it. Almost. She wanted Sis to weigh in on it tomorrow morning before she made her final decision.

And then.

On the way home I called Sis to report the evening's happenings. I told her we were almost a shoe-in for the colonoscopy. And she told me something as well.

Mom's hemoglobin had gone up .6 points before they ever started the first pint of blood. Which meant she had stopped bleeding. Which meant all my cajoling was in vain.

While I was perturbed to have spent all that time talking Mom into something that wasn't going to happen, I couldn't have been happier. To think she might actually be free of the internal bleeding for the first time since the stroke is somewhat unbelievable. So unbelievable in fact, that I think I'll have to reserve judgment on that for a few weeks.

I'm from Missouri. So show me.

Mom was depressed and upset today. She's had it with all this and just wants to go home. I don't blame her one bit, and I truly wish she could do just that. Unfortunately, that may never happen again. She can't afford the round-the-clock care it would take, and neither can we.

In a perfect world, we'd buy a different house with a walk-out apartment on the lower level where Mom could feel like she had some independence. We'd have someone in while we were at work to keep her company and meet her needs, maybe even someone to live with her permanently in her little apartment. She could decorate it the way she wanted, have friends over, and do all the things she'd do in her own home, but with help just a few steps away.

But those are just dreams.

We're not counting those chickens now. Or probably ever.

So Long, Farewell

Mom is leaving the hospital tomorrow.

She is permanently off of the Plavix. The cardiologist and Doc have been talking, and both have decided that one aspirin a day is all she needs to keep her blood thin enough to guard against heart attack or stroke. Her hemoglobin has stayed above ten since the Plavix has been gone, so we know that was the culprit in the case of the internal bleeding. We're hoping the aspirin doesn't have to go as well.

The C Diff is another story.

It's evil.

Mom is a pooping machine, and that machine seems to be able to put out veritable mountains of product. And each and every of the many times a day it happens it's as if her bottom is being burned by acid - which it is, in a way. Until this clears up she will have to suffer through many, many times of being cleaned up, and each of those times is agony for her.

On a lighter note, she has discovered the wonders of morphine. After particularly grueling sessions of being cleaned up in the hospital she has asked for and gotten her pain relieved. Since she has a PICC line rather than a traditional IV, the nurses can push the morphine in fast without worrying if it hurts her or not. Mom loves the fact that it works right away and that it lets her sleep for a couple of hours.

My mother, the junkie. :>)

Seriously, if it makes her feel better I'm all for it. She's suffered enough for a lifetime these past months.

Sis and I talked today about her return to rehab and after. During this last stay we've had to face some hard facts. One is that Mom is never going to be able to live in assisted living. That was the hardest decision for me. I wanted so much more for her than living out her life in a nursing home. However, with her mental and physical limitations there is no way she would qualify to live in any assisted living center. Doc confirmed that today to Sis.

Today is the first time I've been able to say that out loud and accept it.

Another thing we discussed is the closing down of her house. It took me a while to get to the point where I was ready to clean out the freezer and the kitchen cabinets, but I'm there. Now that I'm there I'm ready to begin to tackle the rest of the house as well. Not closing it altogether, but deciding the price things should sell for, then purchasing what we want from the house before we sell the rest. Of course, the family heirlooms will be divided between us.

But we both aren't there yet. Sis is the one that's OK with cleaning out the cabinets and freezer, but she's not able to go further yet. And truth be told, when we get into the actual sorting through things I may not be there as much as I think I am now.

It's hard to let go of a lifetime of concrete objects and have them become mere memories. It's hard to let go of what was and embrace what is. It's such a cruel, painful thing to have to let go of not only the places and things you loved, but the person you knew and loved who made it all what it was.

It's just hard.

Not Today, But Maybe Tomorrow...Or Not

Mom is still in the hospital.

Doc did not call today. I overslept and called the hospital to find this out.

BAD DOC. SHAME ON YOU.

She has been removed from the Plavix, but still seems to be bleeding internally. What they know from yesterday's test is that it's somewhere from the ribcage down. The GI doc wants to do another colonoscopy, but we've been down this road before. Once she's taken off of the blood thinners, the bleeding stops and they can never find anything. And if they do find something and start her back on the Plavix again, who's to say it won't break through in some other place and have her back in the same situation all over again?

Frustration runs high.

In the end it's Mom's decision. She's pooping like a banshee on Ex-Lax overdose now due to the C Diff, so the only difference would be the cramping that goes along with the laxative and the inability to eat. However, she doesn't want to eat anything anyway because she doesn't want to poop.

Again, it's her call.

We'll be there to support her either way.

I Have Some Good News, And Some Bad News

Mom has C Diff again.

I'm thinking I hear a collective groan from the readership as I write this. Kind of like the groan we let out when we found out today that the test was positive. Blood in her stool and C Diff.

Same song, 1,345th verse.

Her heart rate has decreased since the transfusion, which is a good thing. They were also able to start her on Flagyl immediately for the C Diff rather than waiting a couple of weeks like they did last time. Another good thing. They did a test today with radioactive dye to try to tell where she was bleeding out, but we don't have the results of it back yet. Her congestion sounds better and the perturbing stories were gone. Again, good.

I spoke with Doc today and let him know that Sis and I would like her taken off of even the Plavix. If blood thinners are going to cause her to be going back and forth to the hospital every few days with GI bleeding, they aren't worth it. The quality of life Mom has now is almost none due to her constant hospitalizations. If we take her off of all blood thinners we risk her having a massive heart attack, yes, but at least she has a chance of LIVING the life she has left instead of living through it.

Amazingly, Doc seemed to see where we were coming from on this one. He'll see Mom in the morning again to see how her bleeding is, and then he promised to give me a call at home to let me in on the game plan. I may have to be awake at dawn thirty, but I don't have to get up and be dressed to talk.

And that's a good thing, too.

There Are Good Days, And Then There Was Today

Mom is bleeding internally again.

We know this because she's putting out black stool every hour and because her hemoglobin has dropped to 8. She's getting two more pints of blood by transfusion tonight.

She's also been coughing up some stuff, but the chest x-ray is clear as of tonight. However, her heart is another story. It's enlarged and beating anywhere from 110 to 120 times per minute. Way faster than it should be beating. Her blood pressure is within acceptable range, 110/60, but she's running a slight fever of 101.

Add to that the fact that she's talking completely out of her head, and you've got us worried.

She's come up with several different stories in her mind today, none of which are pleasant, and all of which she believed were true. The lower her hemoglobin goes and the more her behind hurts, the worse her mind gets. She should be better after the transfusion tomorrow, but she had a pretty miserable day and evening tonight. It tired Sis out this afternoon, and it wore me slick when I took over the evening shift. Around 9:30 p.m. Mom got so riled up and agitated that the nurse on duty finally gave her some morphine to calm her down and help her with the pain from her behind since she wasn't due for more pain pills for another thirty minutes.

I rose up right there and called her blessed.

And then I went home to see what my house and family look like.

A Room With A View Instead Of ICU

Room 617.

Ah, the 6th floor. It's become our home away from home at the hospital. Only this time instead of being in room 604 or 605, we've switched hallways and graduated to room 617.

To let you know how often we've been on the 6th floor in the past three months, I can tell you that they finally have new chairs in the rooms for friends and family. These chairs are actually COMFORTABLE to sit in, unlike the plastic-ish let-me-torture-your-backside chairs that were there before. A person might actually enjoy sitting in these chairs.

And I knew they were new. Imagine that.

Mom's low blood pressure is again a concern, which is why they have her on the telemetry unit. She keeps saying her heart is wearing out, but it keeps on beating as far as we can tell. The incision site looks good. No oozing of any kind, and they've taken all bandages off of it now. The swelling is much, much less than before, although it's still very noticeable. Her voice is still really scratchy and deep from the vent tube, but that should improve in the next few days.

I spoke with the surgeon's nurse-practitioner today. She was the one who released Mom to the regular room. I asked how long the increased stroke symptoms could last, and she told me it could be as long as 6-8 weeks. She said she hoped there would be some improvement in the next couple of weeks, but she couldn't promise anything, especially given the rough time Mom had with the surgery.

Mom has been insisting she is making dinner for the family. She's having steak soup and homemade bread, and she's been making the soup all day today. She also baked the bread, and had Sis call me from the hospital to be sure I took it out of the oven before it burned. She wanted to hurry and finish her dinner tonight because she had to go to Panera to pick up a bread bowl for my nephew, who is a vegetarian and who will have cheese soup instead.

It's amazing what you can accomplish from a hospital bed when you put your mind to it. And what's even more amazing is that even in the state she's in right now, the uppermost thought in her mind is how she can serve her family. Not her garden, not a television show, not the house or anything else. She wants to do for those people she loves the most.

That's my Mom.

And I love her.

Eternal Sunshine of the Spotless Mind

Mom is being moved to a regular room sometime today if the surgeon signs off on it.

We're both glad and fearful at the same time. Glad, because it means she's that much closer to going back to rehab and eventually settling in her new home. Fearful, because it seems some things have changed.

Oh, we were warned. We were told that the symptoms of her stroke would worsen and that it would be temporary. The thing is, we don't know HOW temporary. A week? A month? This is something we need to find out from the surgeon, as well as possibly getting another brain scan to see if indeed she did have another stroke during the after-surgery problems.

The problems she's having now have to do with memory and speech. Her speech is slurred, much more than it was before. The nurses also say she is having problems swallowing again. But the worst problem is her memory.

She thinks she and Dad are still married.

They've been divorced since 1999.

She asked Sis yesterday where Dad was. When Sis told her he was out of town, she said that was typical of him. Let her be in the hospital, and he takes off on a trip!

Sis may or may not have struggled to keep a straight face with that one.

So today she'll be moved, and we'll work through all of this to see what tomorrow will bring. Hopefully more clearness, both in speech and memory. Hopefully better swallowing ability. Certainly there's more circulation.

I can't wait to see what happens when we do this next time.

Breathing Easier

Mom was taken off of the vent today.

She is breathing well on her own, and just as predicted, her blood pressure has come back up.

Thanks to the marvels of modern pharmacology she is still feeling no pain and is resting comfortably. She will likely remain in ICU for the rest of the day and possibly tomorrow.

More updates later!

Life Goes On Somehow

Tonight Hubster and the kids came with me to see Mom.

They hadn't been in to see her since before her surgery, so it was time. Sometimes they need to see what Sis and I go through on a daily basis to appreciate the life they have and to understand more of the life Sis and I have to lead now. Regardless of whether or not Mom is "the same as she was before the stroke" or not, she is still a person - still someone worthy of love and respect. She is still the same person who fixed all those meals and babysat all those times. The same person whose main joy was in giving to her family. The same person who would do any and everything she could for the people she loved.

Sometimes they forget that. And sometimes they need to be reminded. So tonight they were.

Mom's neck looks much better. You can even tell she has a chin, which is a great improvement over yesterday. Rather than looking as if she has no neck at all, she now resembles a bullfrog.

Sorry, Mom. It will get better with time.

The huge bandage has been removed and replaced with a piece of gauze. There is still a very small amount of oozing from the incision, but it is hardly enough to notice.

Tomorrow morning they have decided to give her another trial to see if she is better able to breathe on her own. There is still some concern that the pressure of the swelling may be compromising her ability to breathe on her own, and if that's the case they'll just leave the vent in until the swelling subsides further.

In the meantime, they are still giving her medication to keep her blood pressure up. The sedation and the morphine seem to be lowering it quite a bit. The cardiologist was in today and ordered her to have more fluids in hopes of pushing her pressure up some, but both he and the ICU nurses believe once she is off of all the sedation and morphine it should right itself.

I'll go by there on the way to work tomorrow, and then again after work to see how she's doing. I usually call a few times in the hours I'm not there, so the nurses and I become well acquainted early on. My vacation/sick/personal leave is quickly being depleted or I would try to take part of tomorrow off to at least see her through the test she has to take.

This having-to-work-to-eat stuff really isn't all it's cracked up to be.

But life goes on, and so will we.

ICU But You Don't See Me Because You're Sedated

And on a ventilator. Still.

Mom's neck still looks like the neck of someone who is world reknown for weightlifting or wrestling. To be sure her airway isn't compromised due to all the swelling, the ICU nurse is pushing for another 24 hours on the vent. That's fine with us at this point. We know how Mom would react to the swelling and to the pain if she weren't asleep.

Her blood pressure is holding steady except when they give her morphine. It takes a dip then, but they have medication to overcome it that works within 5 minutes. We can't tell if she's still seeping from the wound or not, as the doctor has given orders that the bandage is not to be moved for the time being. Again, that's just fine with us.

In the meantime, Sis and I are trusting the ICU to do its job. We come in two or three times a day to check on Mom, but there are no longer any marathon sit-in-the-ICU-all-day sessions as there were when she first had the stroke. It's better for us, and in the longrun, better for Mom. We need to let her rest and heal without hovering over her and worrying.

As I told the nurse, it's so much different this time. For one, we know she'll get better. There's almost no doubt of that. And for another, once you've been through the ICU in a situation where you truly don't know whether someone is going to live or die, it's much easier to turn their care over to professionals with more confidence.

So we'll wait. God will heal her in His own time, and then we'll begin the dance again. Only this time with more blood flow to her brain, and hopefully more energy.

Only time will tell.

Keeping the Status Quo

Fresh from a visit to the hospital, I bring you news.

The pulmonary doctor does not seem to think Mom aspirated any of the fluid or blood that was caused by the hematoma. This is a good thing, because there is less chance of infection developing in her lungs.

Right now she looks like someone took a winter muffler and wrapped it all the way around her neck, then covered it with skin. That's how swollen her neck is. The nurses say there are several drains in place that are catching the leakage, and hopefully the swelling will subside in a day or two. For right now they have ice packs on it.

They're talking about leaving her on the vent until they are completely sure there will be no compromised airway when they remove it. That may mean keeping her on it for a few days or even a week. But better to have her on it that to have her wake up and be scared about what's happened to her body while she was asleep.

Sis and I pop in throughout the day to visit for a few minutes and to make sure everything is going well. It's so different this time because we aren't that worried about if she's going to live or die. This time it's just a question of how long is it until she gets better.

In the meantime I'm trying to complete a project for my part-time job this weekend as well as be at the hospital and be home with my family. I don't think I have this particular juggling act down, so I'll have to muddle through somehow.

For right now though, I've taken a sleeping pill and can't keep my eyes open. G'night.

The LOOOOONG And Winding Day

With apologies to Paul McCartney.

The day started out very early, as days are wont to do. I got to the hospital before either Sis or Mom, but both were there by 7:30 a.m. We had to wait a while to be called for admission since we were technically not supposed to be there before 8:45 a.m. The rehab center believes in sending clients an hour early, so we were there an hour early.

Mom didn't seem to have any fear or trepidation today. We were both glad for that. They called her back and got her loaded on the gurney, dressed in her gown, and the IV started. It took a while for the anesthesiologist to come in to talk to her, and after he did, her doctor came in. He explained what he was going to do, what we could expect, and how long we could expect the surgery to take.

I asked if he was a praying man, and he told me he certainly was - he prayed for each and every one of his patients as he scrubbed up for their surgeries. So he, Sis and I joined hands and prayed for Mom right then and there.

Mom, even without the benefit of anesthesia, slept through the whole thing.

Later, just before she was taken to surgery, another anesthesiologist came in to go over her meds and history with us. Imagine my surprise when I saw it was one of my best friends from high school! Mom knew her and she knew Mom, so we knew Mom would be well taken care of for sure. And off they went.

A couple of hours later the doctor came out and told us everything had gone well and Mom was resting comfortably in the Recovery Room. Sis decided to go to work for a couple of hours. An hour after that I was told she had been transferred to ICU, where she was to spend the night before being transferred to a regular room tomorrow.

And that's where things went a little wonky.

I went back to see her in ICU. The nurse was suctioning her throat, and told me she was just having a hard time coughing up the mucus from the breathing tube she'd had in during the surgery. There was a huge bandage on her neck that was leaking blood all around it. Mom was acting as if she couldn't breathe, even though the nurse said she could. Mom threw off her covers and told me she hurt and wanted me to do something about it.

All of a sudden she started bleeding a stream onto her neck. Since I'm not the type to handle blood and stay conscious, the nurse told me to head back to the waiting room. Being the obedient, not-wanting-to-faint type, I obeyed. I waited for a while, then decided to go one floor down to the coffee shop to get something to eat since I hadn't had anything all day. When I got back some of the other people in the waiting room told me the nurse had been looking for me. I told them I was back and they pulled me inside the ICU door before telling me Mom was back in surgery.

It was that quick.

The nurse hadn't wanted to tell me, but Mom pulling the covers off was a sign she was in distress. When she started bleeding the nurse knew she was in trouble. Apparently, because Mom was on Plavix when she had the surgery, it caused blood to seep into an area next to her esophagus forming a hematoma. It pressed on her esophagus, cutting off part of her airway.
Because of the quick thinking of the nurse, the doctor was able to get into the ICU and they were both able to help Mom in record time.

Mom's heartbeat sped up way too fast during this time because of all the stress. Due to this they had to use the paddles to shock it back into normal rhythm. The doctor pulled out "all kinds of clots" according to the nurse before he took her back to surgery. Thankfully, my friend was still there and she was able to come out and update both of us on what was happening, since Sis had rushed back.

When the doctor came out he told us he didn't think Mom had suffered another stroke due to this, and he'd run extra tests just to be sure everything was alright. He did take her off of the Plavix until further notice, and he told us he was going to leave her intubated and sedated in ICU for at least the night and probably tomorrow.

And then there was a tornado warning and we all had to go downstairs to the basement.

When we came back up we finally got to see Mom. She was peaceful, breathing well on the ventilator, and had been cleaned up from the last time I saw her. Sis and I both knew there was nothing else we could do tonight, so we made the decision to go home and get some rest for tomorrow.

Because it looks to be another long day.

A Little Dab'l Do Ya

Doc took pity on poor Mom and prescribed the aforementioned Xanax for her today.

The dosage was very small - only .25 mg every four hours as needed - but even that amount relaxed her so much she had a hard time staying awake. At this point that's not such a bad thing. Much better that than all the tears and worry she was going through the night before.

During therapy today she was able to move her left leg even more than before she went to the hospital the last time. We're encouraged by that, but still not overly hopeful. The chances of her walking again are almost nonexistent, although she has taken a step or two with a walker.

Tomorrow is the day we've been waiting for since July. She'll arrive at the hospital around 7:30 in the morning to get checked in and prepped for her surgery at 10:15 a.m. We haven't been told yet how long the surgery will take, but we know she'll be staying overnight. We hope to take her back to the rehab center on Saturday with a much-increased blood flow to her brain on the right side. After all, you can't get much worse than 95% blocked, so it has to get better after the surgery. I just wish we hadn't had to wait so long for it to happen.

Call me crazy, but part of me still hopes that the Mom I used to know will come back after these surgeries are completed. The logical part of me knows it's a pipe dream, but the hopeful part of me so wants to believe she is still in there somewhere and will reappear. Yes, even after all this time. Yes, even after all the damage done to her brain. Hope dies hard in this daughter of a stubborn woman. I can't help it.

So tomorrow we'll go to the hospital and sit with her, then sit and wait while she's in surgery, then sit with her some more. And we'll pray the entire time that God's will is done in her life, whatever that may be.

But we'll hope for miracles.

What's Good For The Daughter May Be Good For The Mom

The Boy had a football game tonight, so I determined I was not going to the rehab center to see Mom.

So after the football game tonight I went to the rehab center to see Mom.

Guilt is a powerful motivator.

She had her hair cut and styled today and it looked nice. It's the first time she's been able to have her hair cut since June due to all the going back and forth to the hospital and canceling of appointments with the hairdresser, so I was glad to see it done.

There were three aides in the room when I got there, two of whom were getting her ready for bed. The other was wasting time, which seems to be a habit with this particular aide. Mom is still having problems with her bottom and the after effects of the bleeding in her GI tract. We're hoping this clears up soon. Until then it hurts her every time she has to be cleaned up, and she makes it known. I feel sorry for her, but I feel sorry for the aides as well.

The aides as well as the nurses have noticed her mood change since she's been back from the hospital. I explained to them that she is scared to death about the upcoming surgery, and one of the nurses suggested some Xanax might help relieve her anxiety. Being a fan of Xanax myself, I agreed. It's been a friend to me during times of extreme stress these past months. She'll be checking with the doctor to see what he thinks about using it short-term.

There are times I would like to grind it up and put it in every meal Mom eats, even though I will probably burn in hell for even thinking that.

Just pretend like you didn't read that last line.

At any rate, tonight's visit was very short since I had to pick up The Boy from the school. She's still concerned that he will be hurt during a game. The first question after I told her where I'd been tonight was not "Who won?" but "Is The Boy OK?" She worries.

But I'm thinking she might worry less after breakfast tomorrow....

De Mom Is Demanding

Sis went to the hospital this morning.

Doc called me at home to tell me he was releasing Mom since they couldn't hold her until the surgery due to the Medicare rule. I called Sis, and she told me to go ahead and go to work. She didn't think she'd have any trouble getting Mom back to the rehab center.

Of course, she didn't count on the hospital. Or the nurses. Or the social worker. Or Mom.

All told it took her from around 9 a.m. to around 2 p.m. to get all the paperwork done and Mom back in bed for a nap at Rehab Central. During this time Mom decided to be a pill, wanting this rubbed and that moved and this gotten and that taken somewhere else. And when it was all done just as she'd asked, she wanted to know where I was. Poor Sis had her hands full and then some.

I showed up this evening after work with chicken livers. Unfortunately, I bought them from a different place this time and they were about the consistency of rocks. Mom seemed to enjoy them, though. After dinner I took her back to her room and got her into bed. I unpacked some of her things and she talked to me about how scared she was about the surgery coming up on Friday. She honestly thinks she's got a good chance of dying, and nothing we say can convince her otherwise.

It all stems from a neighbor we had who was supposed to have had the same type of surgery over twenty-five years ago. She talked to Mom then about the "dangers" of the surgery and the "almost certain risk" there was of another stroke or death, and it stuck with Mom all these years. Now the neighbor is long dead, but the fear lingers on. Never mind that Mom's sister had the same surgery successfully. Mom thinks she's a goner.

And then she started feeling sorry for herself.

"What have I ever done to deserve this? I never hurt anyone in my life..."

And that's where I stepped in. After all, enough is enough, stroke or no. I told her in no uncertain terms she was NOT going to die, that this was common surgery, that her sister had lived through it, and so would she. I told her to stop feeling sorry for herself and to buck up and get over it, because none of us had the time or the energy to deal with it. And besides, she was getting the sheets all wet and the aides were going to think it was my fault. It was a pep talk that would've brought a tear to your eye. Truly.

In the end I got a grin out of her and got her out of the mood. But I don't think I got her out of the fear. Only getting through the surgery without dying will do that. And I'm sure it will come back before the next surgery. That's how her mind works now.

She's hoping to see some family before she goes in Friday. We told her a nephew and his family are coming up after the surgery on Saturday. Being the ever-optimistic person she is now, she said,"What good will that do me? I'll be dead by then!"

Of course, my sister Chopped and myself, Liver, will be there for the entire saga. But we don't count. It's the OTHERS she wants to see.

But if we're not there, you can bet she'll want to know why.

It's The Yo-Yo Effect, Only Back And Forth Instead Of Up And Down...Kind Of

Mom is being released from the hospital today for the 132nd time.

Her bleeding has stopped, and the only physical problem she now seems to have is the bottom area. However, that seems to be clearing up as well.

What is not so nice is that we have to take her back to rehab today, then haul her back to the hospital on Friday morning for her surgery. They won't even let her spend the night before surgery in the hospital so that she doesn't have to get up at zero-dawn-thirty to be there. So it's Sunday Monday in, Tuesday Wednesday Thursday out, Friday in, Saturday out.

No wonder the woman is confused.

She was also completely ticked that we had to miss her eye appointment on Monday due to all the hullabaloo, and insisted we could still go if they'd just take the catheter out. I disagreed.

She's been hard to get along with this past week, or maybe it's just that Sis and I are so tired. Last night she asked why Sis and I don't laugh anymore. It's hard to laugh when all you want to do sometimes is be as far away from the person you love and the situation they're in as you can get. Not because you don't love them or care about what happens to them, but because you're tired of it all. So stinking tired you could just keel over at any time. This is one of those times.

But it won't last forever.

We just have to hang on and trust that God has a plan in all of this. That Mom will eventually get through rehab and be the best that she can be. That we will find the best place for her. That we will settle in to whatever normal there is waiting for us and go on with our lives. That there will be happiness for all of us in this again.

God is big, and He can handle all of that. I can't. So I'm putting the yo-yo back in His hands again. He knows all the fancy tricks I don't. He's good at it. I'm not.

Play on, God. Play on.

Just As We Suspected

Another scope was done this morning.

I went to work in order to keep my job, but Sis was there with Mom. Since Mom is an old hat at these things now, there was no reason for both of us to be there. After all, we knew what they'd find.

Nothing. Absolutely nothing.

Since Mom is refusing the laxatives necessary for the camera swallow, there is nothing else the GI team can do except recommend she be taken off of the Coumadin. Of course, Drs. Me and Sis have already decided that, as well as Doc after a conversation with him this morning. We will do this no more.

Plavix will have to do the job, along with a daily aspirin. And if the bleeding continues, one of them will go. Better that than have her live the "life" she's been living the past few months.

As of now the surgery is still scheduled for Friday. We'll see what the morrow will bring, because the morrow has been known to leave some pretty nasty stuff.

And please, let me take this opportunity to thank those of you who have been so very encouraging, hopeful, and who smack me around when I need it. You let me vent here as I can no other place, and that means a great deal to me. I think particularly of my wonderful friend Linds, who has been the rock on which I've stood, leaned, cried, bellowed to, and rejoiced with. "Some American" cares for you more than you know, my friend!

Better, But Still Not Perfect

OK. After the blowup of last post, we'll get on to a saner output in this one.

Mom is better today. No mixing up of words, no unfinished sentences. Her hemoglobin is back up, and measured at over 11 this morning, but had dropped to 10.4 by this afternoon. She is still bleeding from somewhere in the upper gastric region, and that was evidenced by continued nausea today. She was given medication for the nausea which did seem to help. We still have the same problems with her bottom and stools.

The GI doctor's partner came in to see her today and talked with her about doing another scope and possible camera swallow. Mom was emphatic that she was NOT going to take ANY more laxatives, and pretty much told the guy where he could place any laxatives he wanted to try to give her and how high they could go.

He gawked at her, then made a hasty retreat after saying he'd have the partner that usually talks with Mom come in to see her tomorrow. Somehow I think Mom will have the same opinion then as today, but I could be wrong. Or not.

It was all I could do to keep from giving her a "high five."

Mom had three different sets of visitors today, and when the last group left she was pretty tired out. Sis came in for the evening shift before 4 p.m. and I left for the day. I'll be going to work tomorrow, but I plan to stop by the hospital tomorrow morning early enough to talk with Doc about the plan of treatment this time. And to tell him she isn't leaving until whatever it is is FIXED this time. And that she's never going back on Coumadin again.

As for me personally, I am far from worn out. A good friend from church called to find out how things were going and how they could help, so I told her. And it was done. The church has been great throughout all of this from the beginning.

Now that I know that the chest pains were from excessive reflux due to stress they have gone away. I am making it a point to eat regularly, sleep well, and tonight I cooked dinner for both tonight and tomorrow night. The crockpot is my friend. I am not stressing over the state of the house. I am not stressing over the state of the flower beds or the yard. I am taking it one day at a time, and letting God handle the rest. I have no other choice.

This will not last forever. Mom won't be in the hospital forever. Mom won't be in rehab forever. I have to cherish the time I have with her while she's here, but I also have to cherish the time I have with my children while they are home, and with my husband.

Because you never know what tomorrow will bring.