Last night my sister was supposed to have driven in from New Mexico. She’s staying at my mother’s house and I’ve not yet called over there to wake her up, but I’m trusting she’s there. We meet with the Hospice nurse at 10am in my mother’s room. Though it’s possible that meeting will not be needed.

They did the endoscopy yesterday and found that Mother’s stomach is not emptying. It was full of grunge and bile and acid. Acid is backing up the esophagus and eroding its lining. This is on account of the cancer in the pancreas and the liver which cause the nerves of the stomach to stop functioning. Basically it’s paralyzed. Her pain has increased tremendously, and when I told one of the doctors that today she was indicating it ran in a band across her belly he said that was from the pancreas. Basically she’s got major abdominal organ failure going on and there’s nothing they can do. I asked him for a guess on how long she had and he said less than a day.

She was sleepy and out of it all day yesterday. Her breathing is scary. It keeps stopping for a long time, then starting up again, like someone with sleep apnea. When she’s awake her mouth is so dry and she articulates so poorly I mostly can’t understand her. And I have no idea if she understands me. However, at the end of the day as the room grew darker, I sat there watching her settle down after the ordeal of having a Foley catheter placed and began to wonder why the Lord had set it up so that it all came so fast. I thought we’d have time to have that spiritual conversation; now, between the morphine and the dry mouth it seemed we never could.

He suggested I try it right then. I argued with Him for a bit, but finally pulled the chair over to the bed. I think she woke up on her own and not me doing it (my memory’s all jumbled). I told her I’d called my sister and she said “No!” (Because Deb would be all freaked) I told her she didn’t have a lot of time and that she should consider  believing in Jesus. She was trying to tell me something but right then a group of people walked by in the hall outside talking loudly so I went and closed the door.

Then I came back to the bed and she managed to ask me to tell her what they’d found in the endoscopy. When I told what they found, she was quite distraught. It’s good I’m writing this because I can’t think about it without crying. Anyway, she was crying herself and said, “You mean I’m not going to get better from this?” And I said, “No.”

I think I will remember that moment, her expression, the tone of her voice for the rest of my life.

I can no longer remember the chronology of the conversation, only that I told her again that she needed to believe in Jesus. That He was real. That He died for her, He loved her, he wanted her to be with Him. I told her that she would get a new body, and be with Him forever, and she had only to believe. She could do it just in her mind: “Father, I believe in Jesus” (Pastor Rory’s five word conversation) I told her “I know it’s easy for us, but that’s because it was not easy for Him.”

And then I was quiet and she lay there with her eyes closed. Expressions seemed to twitch on her face as if she were thinking; her brow creased, and presently she started to nod and say “uh huh, uh huh…”  Then she opened her eyes and looked at me and said, “Uh huh.”

On the one hand it seemed like she was thinking about what I’d said and saying yes. But she could have just wandered off and who knows?  I waited, almost certain at one point that she was on the verge of confirming with actual words that she had believed, but she didn’t. Then it was over and she fell back into twitching and low cries and finally went to sleep. So I have no idea if she made any sort of decision, but she knows the end is near now, and I said the words. God the HS will have to do the convicting inside. I probably won’t know until heaven, but then Pastor’s been talking about that for some time — not knowing til we get there. I’m grateful for the opportunity to have said what I did, though.

Not long after that, I left for the night and walked down the long, long main hall toward the front door, which after having been a bustle of people going here and there all week, was suddenly deserted. There was no one else there but a lone woman walking toward me carrying a pot of three white lilies. Lilies: Resurrection Life, our Lord Himself, and three of them for the trinity. She walked toward me, then past me, and on, never making eye contact, heading in the direction from which I had come: toward my mother.  I believe it was no coincidence. God holds every moment of our lives in His hands. There are no coincidences. And though I’d seen many people with flowers and balloons in that hall during the week… there’d been  no one with white lilies. Until then.

I know it was a gracious sign from God that my mother did indeed believe.

Well, it’s been awhile since I posted about my mother, mostly because I’ve been exhausted again, and the parade of things going wrong/dragging on and no just gets tedious. In any case, shortly after my last post on this subject, both of her therapists discharged her and she was on her own. Because her back was continuing to hurt, to the point she was no longer doing her exercises and refused to do any walking down the street or to the bookstore or even to the mailbox, her physical therapist recommended we see her primary care.

So we did, the day after she was discharged, on Friday March 25.  He examined her carefully, and wrote an order for her to get x-rays done which we did that same afternoon. The following Wednesday we heard back — nothing wrong. No broken rib, no broken scapula, no new compression fracture, lungs look fine… he even ruled out cancer based on the MRI done back in February. Instead he thinks it’s soft tissue damage sustained when she fell trying to pet the rabbit. It’s possible the bone could be bruised as well, and in both cases at her age such injuries take a long time to heal and cause the kind of pain she’s experiencing.  He suggested she take pain medication for it until it heals, and so last week she stopped taking the Tramadol she’d been taking at night and started taking Vicodin in the morning. (She has no trouble sleeping at night now).

Sometime in there (I think after the first Vicodin) she started getting indigestion. The kind where she burps and feels full and so doesn’t want to eat, and even when she does it, she only eats about half of what she was eating before she feels full again.  That went on for a week and this last Friday she really began to fall down on the drinking so I had to step up my visits and start bugging her about getting in the fluids. That’s when I realized she wasn’t eating as much either, which, given she now weighs 115.5 (up a pound from when she came home from The Forum) is not good. So today I called The PCP to ask about that. Turns out it’s a common side effect of the medications, and he prescribed Maalox.

Because of all that… and the pain continuing in her back even with the vicodin, she’s faltering on being able to prepare her meals, taking all morning to put together one of her (elaborate) vegetarian salads… and so skipping meals, etc.  Today we were supposed to do her shower, but once again she was too tired and weak to do it. Just moving from the sofa to the chair left her out of breath. If the physical therapist is right, that’s because she’s been so sedentary of late, spending more time lying down than sitting up and letting what little strength she’d regained waste away.

So. I have no idea what to do. Bible class, of course, has spoken directly to the situation I am in, since Pastor’s been teaching about the Potter’s Wheel and how God puts us on it in order to conform us to the image of His Son —  which happens only when we are broken. In fact, he’s got a whole doctrine of brokenness, that’s been totally relevant. I’m still assimilating it all, trying to put the pieces together, and make the application.  Which is probably another reason why I’ve not been doing many posts.  Too much to think about and not much to say since I don’t feel like I understand it yet, and probably won’t for some time. But that goes with the Potter’s Wheel experience, too:  you don’t understand. Only after it’s over can you look back and see how it was the best thing for you and what it did to you…

Anyway, that’s the current update. Tomorrow we’re supposed to finally see the ear doctor about getting a hearing aid. My mother suggested today we cancel but I told her it would be another three months before we’d get in so we’re going to go for it. Last week she had to go to the dentist twice, once for a cleaning and second because the hygienist found spots she thought were suspicious and wanted the dentist to look at, but he found nothing. “Her teeth are hard as marble!” he declared.

So that was weird. But not the only weird thing that’s happened by a long shot.  It would be nice if she could finally start to recover.  This just seems to be going on and on and on… So I’d appreciate your prayers in that regard. Or if it’s not His will for her to recover, then guidance as to what we’re to do. She agreed today that I cannot move in with her, so it might have to be Assisted Living…

Goodness. It’s been so long since I’ve posted, I’ve almost forgotten how to do it.  And how ironic that in the midst of my long drought WordPress sent me notice that someone I don’t know liked my PostADay for 2011 entry, reminding me of just how dismally I’m failing to fulfill that  goal. But then it just goes to emphasize the truth of James 4:13, 14 –

Come now, you who say, “Today or tomorrow, we shall go to such and such a city, and spend a year there and engage in business and make a profit.”

Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away…

 How could I have predicted my mother would have a seizure and I’d have to move in with her and then she’d fall and have to go the hospital again and after a week there, spend another two weeks at a skilled nursing facility.

Yes, she was two weeks at The Forum. And as it turned out, all my angst about the Villa Compana debacle, was unnecessary. The Forum had no openings over the weekend, or apparently all day Monday, since at least one other person was at St. Joe’s waiting for them to respond, so even if I hadn’t delayed everything with my brief infatuation with Villa Compana, it wouldn’t have mattered. In fact, five people were admitted around 5 the same Monday evening my mother was. I found out a week later that they had hired a new person to handle admissions and that Monday was her very first day.  (I also received a number of confirmations that I had chosen correctly: VC was NOT the place to have gone.)

The Forum was about fifteen minutes from my home so I went over once a day and stayed for an hour or two. Even though it had a five-star Medicare rating, that did not prevent confusion from reigning. In retrospect I think it was designed to be that way, not by the administrators but God.

The first problem was that  no one could really say what was wrong with my mother, and having a parade of doctors enter and depart the scene (none of whom were familiar with her situation) did not help. In the three weeks, I believe she had 4 different doctors. And SNF rules dictate your primary care can’t be involved. So, among other things they took her off the medication her oncologist had prescribed to stimulate her appetite (in fact, that was done in the hospital because apparently, it causes blood clots). As a result, after three weeks of not taking her, her appetite vanished. She lost three pounds in the last week because she couldn’t force herself to eat the food, which wasn’t all that appetizing to her anyway. She thought it was awful, horrid “crap,” but to be fair, I don’t think it was all that bad.

Anyway, because of some confusion at the hospital, which I’m still pursuing, The Forum was given no discharge orders regarding the broken bone in her left hand (fifth metacarpal). She had a huge club-like splint on it and she’s left-handed. So it was incredibly difficult for her to eat, and writing was out of the question. I had mentioned to the nurses that she had problems with dehydration, so I guess the compensation was to serve her at least three 4oz glasses of liquids at each meal. From what she told me she didn’t know why there were so many glasses of liquid and spilled at least one of them every day.

Anyway, about two weeks in, it dawned on me no one was doing anything about the splint on her arm. No x-ray, no doctor visit. So I asked and learned about the absence of discharge orders which meant no one at the Forum, could even touch it. I had to scramble then, going back to the orthopedic surgeon who’d worked on my arm and put the rod in my mother’s leg. His office was close to The Forum, so I stopped by on the way home that Friday afternoon.

Long story, short (and minus the confusion and oddness that has become seemingly inevitable in this affair) the club is gone and she’s wearing a forearm brace, we went for x-rays yesterday and will see the doctor on Thursday. She left the Forum last week.

But, weight loss or not, bad food or not, confusion or not, it did her –and me — good. Because she came out far stronger than she went in. In fact, she came out of both the hospital and the SNF stays better and stronger and more alert than she’d been when she went in. And she seems to be improving every day.

My sister arrived last week, the day after Mother was discharged from The Forum and has been staying with her, while I try to get caught up on sleep, housework, her taxes and just letting my brain rest from having to juggle so many things at the same time. I knew I was reaching my limit not only because I was constantly struggling to find the right words for things in order to speak, but I was also beginning to forget things, some of which were important. 

We were thinking a couple of weeks ago that we’d probably have to find an assisted living place for my mother to go, even though she had remained steadfastly against it. Now it turns out, she’s probably going to be okay at home. Right now the biggest problem is that she cannot prepare her own meals. It would help if she would consent to have a microwave, and be more flexible regarding food choices, but since  she won’t, we’ll have to work around this. My sister’s going to be here through the week at least, and after that… we don’t know. Though at the rate Mother’s been improving maybe she’ll be sauteing her own spinach sandwiches before the month is over.

So that’s a quick and greatly summarized update of what’s been happening. You’d think that given I’ve been sleeping at home now for almost a month I could have gotten a post off earlier, but it seemed like I never had the time, and on the few occasions I did, I was too tired and didn’t have the words.

That’s how the days have been. One day it seems like everything goes into the toilet, the next hope returns. Today it’s the toilet.

The doctor issued a discharge for my mother today, with orders that she go to a skilled nursing facility for some rehab before she goes home. Not what I’d been hoping for. The only SNF she’d been in — and thus that we were familiar with — was the Forum, which has a five star Medicare rating but which she hated. I didn’t like it much either. It was dark, and seemed cramped, few windows, just creepy.

But we knew it and it had five stars, so we chose it. The case worker needed another option and suggested Villa Compana, which I recalled being on the list of places I’d looked into the night before but hadn’t brought with me. I thought I recalled it as having 2 stars, though admitted I could have been confusing it with another similarly named place that had gotten more. The c-w  was surprised by the two stars I quoted, but said yes, it had had it’s problems… she thought it was better now and often sent people over to it from the hospital. And no one had come back to complain to her. She suggested I go and look at it while we waited for some administrative stuff to be completed.

So I did. It had recently been renovated, and was beautiful. Wide, spacious bright hallways, clean smelling, brand new rooms with new furniture, TV’s for each person instead of one stuck in the middle of the semi-private room for both residents to share and best of all wide windows with a great view of the outside. There was also a spacious inner patio for residents to go out into.  I recalled my mother saying she really wanted to just sit on the patio under the blue sky and hear the birds.

I thought it was great. All the things the Forum wasn’t, it was. I thought she would like it. I went back to the hospital and said we’d go for that.

Then I went home and looked at my list. Not 2 stars. 1 star. One. Oh my. There was also an article on nursing home abuse associated with this facility. Granted the article was from 2005 and the rating seemed to have been given in 2009 so maybe things had improved. They were obviously trying to improve things… about then the representative called to say transportation had been arranged so I asked her about the 1 star. I told her I was quite freaked out by that. She was clearly uncomfortable on this subject. Yes, she knew about it, and assured me they were doing everything they could to improve on that. There’d been a shift of administrators  just last year. Plus they had something called an angel care program that I could use if I wasn’t satisfied. She asked me to give them a chance. I said okay and hung up.

Then I found a checklist of things to ask when you tour nursing homes, things I’d not even considered but that were very important — things like how do you handle residents who are incontinent? Do you ever use catheters to manage resident incontinence? How do you identify residents who are losing weight? How often do residents fall here, and what do you do when that happens? What is your fall prevention program? What is your nurse and nurse aid turnover? etc. All of which filled me with dismay…

 And then I found the medicare report itself. There were problems with medication dispensing among many other things, and the rating was not years old, but dated Jan 24, 2011. My misgivings mounted. Finally I came across a single review from a user. There were no good ones. Only this one, which said to stay away, it was a disaster and they had almost lost their mom there.

So that was the clincher for me. I drove back to the hospital, told the caseworker some of what I’d found, apologized for being so spacey, but asked her to stop the transportation order and instead try and get my mother into the Forum. She said she’d try, but it likely wouldn’t happen until tomorrow morning. I feel like an idiot. I feel guilty for bollixing everything up and causing my mother to have to stay in the hospital with her terrible roommate yet another night… and have to keep rebounding all that…

There is now no condemnation for those who are in Christ Jesus…

I’ve learned a great deal about choosing a skilled nursing facility — most especially that I have a great deal more to learn. But with all the problems my mother has, I feel better about her being in the five star place than the 1 star (even if the latter does have new floors, furniture and great windows… ) Hopefully the transfer won’t be too terrible for her.

I feel like my brain is falling apart. Not remembering to bring the list of the SNF”s Mother’s insurance covers sand their ratings today… yesterday I forgot where I’d parked the car and wandered about the parking garage looking for it… also spent some time searching for my house keys only to discover they were in my hand…  the other day I forgot to lock the door to my mother’s house… etc.

And now I’m fighting off a new wave of guilt for sitting at home writing this blog post when I “should” be sitting in the hospital with my mother sharing her misery. But since she was asleep when we stopped in tonight, and I’ve already been over there two other times today, that’s probably not a valid source for self-flagellation.

Well, things have changed suddenly and dramatically. Saturday evening my mother and I talked about the fact that I could not keep doing what I was doing. I know that I am burned out, because I’m starting to want to run away and that’s one of the things listed in articles about caregiver burn out. I’m also starting to have problems processing everything. I’m also beginning to realize that some of my mother’s demands — ones I was automatically catering to — might be somewhat unrealistic.

Anyway, she continued to assert that we didn’t need any outside help and I really didn’t need to stay there. She suggested that I could go home at night, that she would be all right and that she thought she might even be able to make her own breakfast. Thinking she meant her usual of toast and chai from a box, I agreed she might want to try.

So Sunday morning she got up and got right to it. But instead of toast and chai she decided to make toaster waffles which she had never made before. So she had to open the box, and read the instructions, put them into the toaster, heat up syrup and butter in a small pan, get out the dinner plate, get the large glass jar of pecans out of the refrigerator, try to lift the plates out of the cupboard… suddenly I saw all sorts of difficulties. Her dishes are a heavy pottery type, and it was difficult for her to lift more than two at a time. Since she has about six smaller plates stacked on six larger plates… she struggled.  With her shaky hands and weak grip I began to see all manner of potential problems. Even her storage containers are glass and heavy. And breakable.

I began to understand why my 90 year old stepmother habitually transfers things from their orignal glass or large heavy plastic containers into smaller ones…

Anyway, once the waffles were cooked in the possessed toaster oven, she cut up a banana to put on it, then the pecans. She also poured OJ.  All of it she did accomplish, but barely. I did have to bring the plate to her at the table.

Well, then it was time to go, my husband was at a race and knew he might barely make it, so had arranged to call me as soon as he arrived home.  When a half hour had passed after he’d said he’d call, I decided to just go. Mother had eaten a big breakfast and was settled on the couch. I was pretty sure with all that activity and food she’d be sleeping for most of the time I was gone, and felt confident she could get down the hall to the bathroom on her own if need be.

So I called home and left a message for my hubby not to come after all, and left. He never got the message. Instead, knowing he was late, he came straight to the house, had no key, rang the doorbell, Mother got up and hurried to open the door and in the process of figuring out which key to put in the lock, got tangled up in her walker and fell.

She did manage to get the key into the lock and let Stu in, but couldn’t get off the floor. He lifted her to the couch, and she had bruised knuckle, hurt her back on the walker and had a couple of abrasions on her head. She seemed to be functioning okay, but… we really, really, really didn’t want to go to ER on Sunday, for what might be nothing. (Been there, done that) She’d already fallen two times without injury and she was pretty set against going, herself.

Monday, she was having even more trouble standing from a sitting position, but that was something which had been going on for days on account of her feet. On Monday, however, she said it was not because of pain but because she seemed to have forgotten what to do. When the physical therapist came to give her her infrared treatment and we told her what had happened, she agreed about the hours in ER being very difficult for mother and suggested we call her primary care doctor and get an order for an x-ray at one of the radiology places. Great idea!

 Unfortunately, when I called the PCP, I found out he was out of town til the 18th. Because I had mentioned as an aside that I thought Mother might have fallen in part because of a drop in blood pressure when she jumped up off the couch, the PCP”S colleague who was covering for him refused to give us an order for x-ray and said we had to go to ER to get xray along with having the blood pressure sorted out.

Huh? I thought it was sorted out. But in the end we went. We waited two hours, sitting amongst people who were moaning, one guy who kept going to the bathroom to throw up, others who were hacking and coughing horribly. It was cold. Mother wouldn’t drink anything because she couldn’t go to the bathroom there. She still didn’t feel bad, except her feet had begun to really hurt. So I went to ask the receptionist what kind of wait we were looking at I was told 4 to 6 hours. That seemed way too long for the circumstances, so we decided to go home.

Perhaps that was a mistake… but in the end I don’t think so.

I left the light on all night and noted that she got up only once to go to the bathroom, which she accomplished without problem. But when I went into her room later to get her up, I found her sprawled across the bed, where she’d apparently sat/lay after the bathroom, unable to move herself out of that position. I used the sheet to pull her around so she was lying along the edge of the bed but even then she just couldn’t get up. Finally I could think of nothing to do but call 911.

The paramedics came, transferred her to a gurney and whisked her away. Even though their leader warned me the wait might be as long as the day before, and she might even be put out in the waiting room as before, it didn’t turn out so. I think the fact she couldn’t move or stand up contributed. When I arrived she’d not only been given a bed and a room, but they were wheeling her off to x-ray.  We did have to stay in ER almost all day, but at least she was lying down on a bed with a blanket and people came in with a bedpan if she had to go the bathroom.

The x-ray showed she had a break in a bone in her hand, and two compression fractures in her spine. They did an MRI to determine if either of them was new. One was, and could therefore be “casted” from the inside with an injection of bone cement.  Compression fractures typically heal on their own over time, but this procedure commonly reduces the pain almost immediately, allowing the patient to get back to daily activity far more rapidly than otherwise. When we agreed to pursue that line of treatment, Mother was admitted to the hospital.

This morning, they did the vertebroplasty, and I think it helped a little, though not as much as I’d hoped. When I saw her this evening, she was still having trouble even moving for the nurses to insert her bedpan.  Tomorrow the physical therapists will evaluate her and decide what should happen next. Might be in-patient rehabilitation, or she might have to be moved to a skilled nursing center with a rehab unit, if she’s not strong enough to do the three hours of daily rehab required for in-patient. The doctor even suggested she might go home, but I don’t think I could handle that. It was hard enough when she didn’t have a fractured hand, and apparently there are cancer lesions in other vertebrae to an extent the doctor was amazed she wasn’t on powerful pain meds at home.

And besides all that, her blood pressure, instead of being low, and gone back up again and they’re wanting to treat her for high blood pressure rather than low… I don’t think any of this could get any more complicated… Then again, sure as I say something like that, it will.

Anyway, right now I’m hoping for the in-patient rehab option at the hospital where she already is, since they actually have food she can eat and have done much to accomodate her dietary demands.

To be continued…

Well, I came home for a couple of hours, mostly to see Quigley and use the computer. A couple of hours isn’t enough. I did Bible class… what with my having no computer and with the snowstorms stopping class at the source, I’ve REALLY missed it. I’ve been doing random lessons on my mp3 player or going over notes, but I really miss hearing the voice and the discipline of listening to a class.  Anyway, when it was over, after a bit, Quigley came in to jump in my lap and let me love on him a bit. I miss him a lot. In the other house I keep thinking I hear him, then realize I don’t because he’s not there.

Interestingly, God seems to be giving me the message that it’s time to stop doing what I’m doing. I’ve been thinking about it. One of the therapists told me it was time for me to get back to living my own life, that I can’t keep doing this. My mother doesn’t think she needs any one to come in and help her, though she knows she can’t prepare any real meals for herself… I again suggested she hire someone to do that, but she refuses. The occupational therapist asked, “Why should she do that when she has you?”

Good point.

Then a friend pointed me in a similar direction, and just now listening to last night’s (Friday night’s) lesson, suddenly pastor in the midst of teaching about being vessels of mercy took us to Song of Solomon 1:6, where the Shulamite woman is lamenting the fact that she’s been burned by the sun… sun representing the work and labor we do here on earth underneath it. The work has burned her out. Others have made her take care of their vineyards and she hasn’t made time to care for her own. This is a picture of believers getting burnt out from serving others — because they’re not setting aside enough time to serve or nourish themselves through the intake of doctrine, prayer and fellowship with God.

To some degree that’s been true, because I’m living in a very strange circumstance right now, but I have been, as I said, doing some form of study every day.  But more startling than that was that in the course of teaching this section Pastor said, “By the way, there is nothing wrong with stepping down from any of your responsibilities. Nothing whatsoever.” 

Hmmm.

The neuropathy continues to be the main problem, in her feet and hands, but we have hope the infrared (anodyne) treatments will help. They have already made a difference, but unfortunately it’s been mostly in an increase in pain. Supposedly this will peak and relief will be found on the other side. That could happen this week. I don’t know what difference that will make.

In any case, my time here has run out, so I have to sign off. I have been leaving her more and more this last week, so perhaps I’ll be back home to add a bit more to this update.

Thanks for all the prayers and support and suggestions. I appreciate it.