update with shots of gold laced through it

An update to this morning’s post.

After nearly setting the toaster oven on fire by trying to ‘crisp’ the breakfast allowed by my diet (down 3.6 pounds in first week), we had to open all the windows and doors to let the smoke out. Hard to believe 3 very thinly sliced dried wheat “bagel” pieces could have between 1 second and the next have turned so thoroughly to black char and created the dense choking haze that resulted. Argh.

And then we let that push us on out the door for our Snowy visit, muscles knotted, nerves tight, blank faces. We had no idea what today would bring, who we would find in Snowy’s body.

And it worked out. She saw us as we got off the elevator and approached her in the day room. She didn’t recoil or act as if she didn’t know us. She was very full of the anxiety of over the Power of “They”, and she countered everything we said or sugested or asked or whatever…. with the admonition that They would never allow it, not to try, not to draw attention, etc. We tried to pour sunshine on that, but she wasn’t buying it. Finally we suggested going back to her room so we could visit in the quiet, and she told me with a “heh”, “You’ll never get away with it.” We said, let’s try.

Of course we rolled down the hall to cheery greetings and pats on her arms and exchanged niceties from the staff. They are a great group and devoted to the care of the patients. We don’t know who “They” is, but the staff is not. Once in her room and Snowy’s fussing again about “They”, and “if you only knew what I went through,” Chick asked her to tell us. We wanted to know what it was that had her so skittish. She said she couldn’t tell us, we might be overheard. We assured her no one was around to hear, but she clamped her lips shut. So Chick began asking her direct questions: Has anyone hurt you? Are you hurt? Is anyone mean to you? Anyone mean to anyone else? etc. To each question, Snowy looked mildly surprised and said clearly, “No.”

Then she began telling us that she only had half the room, that the Man who lived in the other half had died, and no one had moved into it. Since we had seen her darling roommate out in the day room and shared big smiles with her (she blew me kisses), we didn’t know what the story was that Snowy had in her head. She doesn’t retain at all anything about her roommate, doesn’t recognize her even when they are sitting next to each other. She saw no one sitting on the other half of the room so her mind made the leap to a story. She repeated versions of this over and over  during the visit. Eventually she was using that as a bargaining chip for us to pursue moving in with her in that side of the room — “it’s empty, the man died, it’s been awhile, no one is using, I don’t know why they wouldn’t let you move in.” We finally told her we would definitely look into it. I told her that in any event we planned to visit her every day. Her face lit up – truly bright and happy and her eyes glowed. She clapped her hands and said, “You will? That means everything!”

The other really, really, REALLY great turn of events is that Snowy will not only EAT, but she will/ can actually feed  herself! We had arranged for her to have her lunch brought to her room so we could try to feed it to her there and continue our visit. After the last few times when we had been present at mealtime, she ate little if any and none by herself. We had scoffed and exchanged disbelieving looks when we were told that she ‘ate all her breakfast by herself’. Ha. She hadn’t done that in some  years at home.

But today she willingly let me feed her the pureed versions of mashed potatoes (with a pat of butter), something I thought by sniffing might be corn but wasn’t, a scoop of bread mush. The brown ’stuff’ was apparently fish, and she quickly turned her nose up at that and washed it away with milk. At one point she said she was “through” and I put the spoon down with the handle facing her. She forgot she was ‘through’, picked up the spoon, and began eating. Chick and I almost fell out on the floor! She fed and fed and ate and ate and drank and drank. WOW.

Her “They” thread began to soften a bit during our visit. Chick began reading to her from a book she was just starting, and even though it’s doubtful that Snowy was really following the story but she was definitely tuned in to the reading and Chick’s soothing voice. When there would be an interruption, she would always want Chick to continue with the reading.

Right before 2:00, “Miss Tony” appeared to take Snowy to Activities. She said that this helped Snowy not feel trapped on the floor and got her ‘out and about’ and seeing, if not really meeting in her own mind, other residents. We were delighted as all we had to offer was a chance to stretch out and take a nap. Chick and I slipped away at an opportune moment to avoid any distress, and high-fived each other as we rode down in the elevator. 24 hours can make a substantial difference with an Alzheimer’s patient — a difference that can go any of the 360* from the previous point. You never know. You just have to keep showing up.

Today, we smile.

Fighting the alternate universes

Where to begin.

Visits to Snowy have taken a turn. Each time we go, we harvest the day’s experience for clues, symbols, guideposts, hoping to figure out what is going on, how Snowy is doing, how she is reacting physically, healthfully, mentally, socially, how we can best support her transition and health.

Each visit, though, is as if we are stopping in with a different person, each with little if any connection to the one visited the previous day.

At this point we have hugged and held hands with stunned, weeping Snowy; had enchanting times with storytelling Snowy who explained that she was at an eccentric hotel waiting for her husband to come back for her (and who whispered to Chick that her roommate was nice but she was ELDERLY, although she didn’t hold that against her, and who encouraged Chick to go “snoop” the pictures the roommate’s family  had placed by her bed); had almost coherent talks with wistful Snowy, again still stunned with her turn of events, and wondering how her life could have turned out this way.

We have spent time with her in her room and in the day room. She has yet to be in a position to let us take her elsewhere in the facility. We have ‘dreams’ of being able to wheel her around and show her some things and then ‘eat with’ her in the main dining room on the 1st floor. Who knows if that will come to pass.

The last 2 visits have been some of the hardest. The first of these we came about 45 minutes before lunch was to be served, and all the ‘personalities’ were placed at tables around the dayroom. The tablecloths on the tables heralded the next purpose. Snowy was sitting at what seems to be ‘her’ table, smoothing and smoothing the tablecloth. She didn’t really know us when we sat next to her, but she tolerated us until she finally seemed to accept we were who we said we were. When her lunch was served, she refused to eat or drink. The aides were surprised and told us how she had eatten ‘all’ of her breakfast, even feeding herself which she hasn’t been able to do in months. I was a bit persistent with her and got a few bites of each of the different colored ‘mushes’ (pureed food) in her, but only barely. Snowy was under the sway of the thought that she had to have permission from the “authorities”. We wrestled with her inner voice, even getting the aides to directly give Snowy  permission to eat, drink. She wouldn’t buy it.

Finally Chick came up with the successful thought of letting Snowy think she could ’sneak’ and get away with a bite here, and sip there: “Quick, Snowy, no one is looking! You can have this!” And then I would move next to her and tell her I was blocking the view of anyone looking, so she was safe to sneak a bite. She got into that and ate and drank in snatched moments when she thought “THEY” couldn’t tell. We were a team, bound together.

Yet somewhere in the hallway as we wheeled her back to her room afterwards, she lost us completely. By the time we got to her room at the end of the hall, she had no idea who we were or where we had come from, and she withdrew from us, anxious that 2 strangers were in her room with her. After a bit of strained conversation, Chick got her stretched out in her bed for a nap, and began reading Miss Fannie’s Hat to her, something that usually engages and soothes her. Even that didn’t work, and she turned her head on the pillow to stare away from us as if willing us not to exist in her universe. When she finally dozed off (after Miss Frances showed us how to attach the new fall monitor to her and the bed), we slipped away, a bit teary and quiet before we began to review and analyze what we maybe learned.

For yesterday’s visit we had decided that ‘the key’ was NOT to be there at a meal and that we should take her back to her room to visit. We thought that it was too distracting for her to have to deal with ‘company’ and eating in front of us, AND we could definitely tell that  her hearing  – or trouble therewith- was exacerbated by trying to pick out what we were saying to her using our ‘inside, company’ voices to the background of the various shouts, moans, laughing, etc. that was the reality of the day room. We got there mid-morning and found her as expected in the day room. We planned to catch her eye, exchange big recognizing smiles, and then wheel her back to her room for a good visit in quieter surrounds.

She didn’t know us at all. Not only that, she didn’t WANT to know us. We pulled up chairs next to her (with great difficulty amidst all the wheelchairs of the others) and tried to greet her, to kiss her, to talk to her. She flinched away from us. And not just flinched, she F-L-I-N-C-H-E-D!!!!!! in dramatic style to indicate HOW flinching she was. She seemed to glance around for help from these unknown people touching her, talking to her. It was clear that she did NOT want to engage with us and wished us gone. We couldn’t give up, not right away.

Chick tried over and over to give the cues of the many shared-love-rituals they had built up over the last 6 years, the winks and smiles, the “I love you a bushel and a peck” chant, the reminder of being her granddaughter. Snowy jerkily shook her head in denial. “Don’t  have a granddaughter.” “Don’t  have a daughter.” “Don’t have ANY children.”

I tried with a bit more firmness, ‘being’ an authority figure that she usually responds well to. Nope. Not buying that either. She denied her relation to us, she denied having a husband named Tom, she denied parents named their names. Further, she denied having children, a husband, a momma, a daddy, denied that she  had a name – slipping momentarily into the nightmare of an earlier episode here at home when she thought she had no name and was inconsolable – but after a moment’s echo in  her mind of ??? when she said that, she showed no other emotion about it. She denied having eyes, and denied being able to see. If we pattend her arm or tried to  hold her hand, she jerked away. When I tried to gently rub her shoulders, something she usually relaxed and purred to, she twisted around and glared at me and snapped, “Don’t do that! Why are you doing that.”

Chick was cut to the quick. As much as we both know this is the disease and we shouldn’t take these things personally, it is almost impossible not to feel the knife-thrust on a personal level. It affects us personally, deep to the heart and it is too hard not to cry that our precious Snowy is recoiling from us.

At one point Snowy raised her hand (for the teacher? the authority?) to listen to her – we surmised later that she wanted to report us for bothering her – but by the time we could get an aide to see and ‘call on’ her, she had forgotten what she meant to say. It was obvious that our being there and attempting to interact with her was making her increasingly anxious and upset. The only tiny breakthrough was that for some reason she began to accept my stroking her hair lightly, petting her poor shrinking-brain head, the shiny silver hair that had been softly cleaned but not set back into any curl or style. Somewhere, somehow, these pets touched her non-negatively. But. We were not going to recover her on this visit.

Miss Frances, her main day aide who had dayroom-sitting duty while we were there, was so surprised that Snowy was  having the reaction she was to us, and she kept interceding with coos that we were her daughter, her granddaughter. Snowy would stare straight ahead so that she didn’t have to look at either of us and hiss, “Don’t have a daughter. Don’t have a granddaughter.”

With a heart-heavy sigh, we signaled to each other that we should leave, which we did with love expressed and promise of a visit the next day. As we paused by the nurses station next to the elevator, I asked the head nurse if she had started the additional anti-depressants yet. He thought first, Oh, Yes! Then flicking through papers (I  had caught him in the middle of a project), he said, Well, if she hasn’t, she’ll be starting today. Oh, let me make myself a note to check on it.

We quietly rode the elevator down, swapped our visitors badges for our driver’s licenses, and made our way back to the car and then just sat there in a real funk. We could only plan to drive again.

_______________________________________________________

I had already wrecked Chick’s morning in the car on the way over. She was so happy and chirping and in a wonderful mood because she had finally had sufficient sleep the night before. She was marveling at the wonderful way she felt just from getting enough sleep. She was smiling and sparkling. It was so great.

And then I ruined it by thinking I should share some thoughts I’d had about hunkering down and getting ready for the lack of a future. I told her I was thinking maybe we should get a storage unit and try to get some help moving all of our things other than just the essentials we needed to live for  now. That way when we had to move we could rent a small uhaul and drive away with our essentials and then save and send for the rest at a better time. Or, alternately, we could move the essentials into the storage in case we had to start living in homeless shelters. One, I thought we should do this while I still had a bit of money coming in so we could afford to rent a storage unit and get some ‘guys’ with a truck to move things for us. I thought also that come the day when we ran out  of the ability to stay HERE, it would be less awful to cope if we had already handled the getting things together and getting them out in due course rather than under a day or so drop dead deadline. I was trying to be practical and forward looking, contingently-planned, rather than allowing myself to be covered in denial and not facing and planning for the worst that could happen. Believe me, that much more attractive and appealing ostrich tendancy is warmer and more lulling than wiping the cobwebs from tear-stained eyes and staring into the gray and cold of how close we are to pfft.

[My savings, what they were, have been going to debt reduction, something that would have been dealt with fairly completely if there had been even just 6 more months of The Job. But, that's not the reality, so I can only sigh and shrug and ponder how next to deal with that.]

ANYWAY, I crashed Chick’s one super happy morning in a long time, reduced her to tears as she told me she could only deal with grabbing on to 1 awful challenge at a time, and she’d been prepping to deal with Snowy’s situation. And no matter how hard I wished and tried, I could not recall my thoughtless musings. What is wrong with me?

________________________________________

I press on with the job search, the struggle to find somewhere that could recognize I could add value or at least service for a living wage. It is hard, humbling, humiliating, stressful every single moment as the adrenalin of fear pumps through me as I try and try and try. I just have to have faith. I do have faith. I also have a LOT of fear and anxiety.

And, so it is.

a day more, starting at 3:02 am

Overnight, exhaustion built a layer over the open wound of pain. Inch by inch I’m crawling along. Movement is fair better than paralysis. As long as I am moving I can inch towards right directions if I am momentarily pointed the wrong way.

Chick was back last evening after the shower and dinner and beach walks with her buds, late for her current mode in which tired hits her very early in the evening. But she was animated and happy and smiling and talking a mile a minute of exciting news and stories and just a good time spent with her longtime friends, finding her way back to her own foundations. That made me feel so happy.

And then came 3:02 AM.

I am still sleeping on the sofa, too accustomed to being there for Snowy to feel comfortable elsewhere. And like the guardian sentinel I tried to be, I was where the ringing of the phone at 3:02 could reach through my grogged state and weird-assed dreams. I couldn’t move fast enough to find a phone before it stopped ringing. But as I finally grabbed one and hit the caller ID, I had the premonition of where it would come from. It was the nursing  home.

I wrote the number down and quickly dialed it back. “2nd Floor Nurses Station.”

I identified myself and was quickly given the news that Snowy had just been found in the doorway of her room in a heap. She had no idea how she had gotten there or why. (Had she needed to use the bathroom and in her improving state didn’t have a physical restriction staying her impulse to get up and out of bed on her own, and then had lost her balance on the way? Or had she fallen as she tried to get out of bed and slid to the foam mat that is placed there for her protection? And, either way, had she then had the instinct to crawl to her doorway so that she would more quickly be found with help? She doesn’t know, she can’t fill in those gaps.)

In any event, she was complaining, as she had from the previous fall, that her knees hurt.

Before I had been called, the doctor had been called and filled in. She had told the nurses to contact me and ask my ‘choice’ of what next — she could either be sent “now” to the ER, where she would probably wait for  hours  for attention and x-rays and be compoundedly confused by what was happening; or they could tuck her back in bed for now and they would be able to do x-rays later in the day. I told the  nurse that with the earlier fall she had also complained about her knees, among other things, and it had proven to be the arthritis that had been shaken up. I told her I thought that they should tuck her back in bed and wait for the daylight hours and do the x-rays (there?). I could tell from her voice that she agreed with me.

I sank back down onto the sofa amid my nest of various blankets and quilts and thought about this. It frightened me, absolutely, YES. The thought of my little Momma ‘in a heap’ on a floor seeking help was so upsetting.

BUT.

She had done the same thing here and it was only a fluke that I found her when I did with only her body temperature to tell me that she probably hadn’t been there that long. I had beem freaked out, afraid, unsure of what to do next, probably did the wrong thing in moving her and getting her back in bed, had to call for help, call 911, have paramedics come with accompanying firetruck, have her taken out and rushed to the hospital, spend hours and hours in the ER going for several x-rays, ct scan, having her with an iv and being given morphine and… and then still having her hurting for another week after.

This time she had aides, nurses, a doctor on call, professional help assessing her, knowing whether, and how, she could/ should be moved. Her situation was taken into account, albeit with my agreement, to minimize the disrupting aftercare. She was in the right place.

We are part of a ‘village’ now, with help– HELP. Help that was experienced and professional in dealing with the happenings of elderly folk, their frailties and confusion. She was safer, she was more quickly accurately cared for. That counts for A Lot. A whole lot.

Chick has gone to see her with her best friend who she will then take to the airport to head back to the snowy North. They spent several  hours with her, and she called me from the car to say that Snowy was OKAY, and she will call me as she is driving back home and fill me in. This even more fills in my sense of relief and gratitude for Snowy’s new care, as well as the sense of validation that her move there was a right thing. It may not be THE only right thing, but it is a good right thing. God watch over us all, PLEASE.

A note on me – Chick has begrudgingly agreed to mash on my shoulders a little bit tonight to see if the symptoms I’m having are related to the tight muscles and sometimes spasms in my neck, shoulders, back that I had gotten from my turns at lifting and moving Snowy in the last weeks. Or if I am having a recurrence of MS symptoms. I have begun having the combined tingling + loss of feeling in my arms, the right one especially, that is reminiscent of issues I had in my legs the last time I had a recurrence of the MS. I just want to, need to, know. I’m hoping it is just ‘pinching’.

Anyway – hours later, still lost but not so wrecked. I’m making motions.