Au Revoir, 2008 :-)

I rarely ever wish I had the chance to relive a year, make different choices, go different ways. I am, after all, all about the journey, which I know always takes different twists and turns and has me in ‘places’ I never could have dreamed up.

I think about the prevailing ‘themes’ for this past year — Snowy & Alzheimer’s, Chick & the pregnancy journey, Critters & being critters, Work & battles — and those’ve been the rubber walls of the Small World for a bit now.

2009 will definitely bring some stretching on those walls, just from what I can foresee easily. We will add a generation this spring, with all the attendant joy and change. Alzheimer’s will terrorize us with its growing control. Work will keep me nervous, but I’m glad to have a big project I can escape to. Chick will truly bloom and come into shining times.

But, that’s all ahead, along with a billion details I can’t imagine — and don’t want to try.

I wish I saw ahead the answers to why I am so ‘fluffy’, to why something can zap me out of the blue and make me cry unexpectdly and unwelcomely, to when I will feel I am ‘caught up’ enough with all I need to be doing so that I can take on some of the creative things that make me feel like “me”, to feeling like I actually know the best thing to do next…

That’s just me, wishing, again. I have a collection of crystal balls amongst my slightly larger collection of orbs. In earlier years, when I was not yet so scarred over from life experiences and training, I used to be able to use a crystal ball to see things that were around me on a more spiritual plane. Maybe it was a bit of self-hypnosis or just a relaxing of the shields I was learning to cover with, but it felt better to believe that I was open to a wider, more magical experiencing of life.

That’s what I would like to find again. I want to try to get there and hope to explore ways of doing that. I’m not looking to revist an old part of my path since I always want to move on, forward, etc. But it’s a big place, this ‘world’, and I need to make it part of mine.

The  magic of new life will definitely help.

Waving a sword at the fire-spitting dragon of Alz’s will help.

Embracing my own child as she creates her magic will help.

And I need to stand up and seek it.

So, anyway. I’m just thinking ahead a little as I glance back. I thank all of you who are kind enough to check in here and encourage me. You’ll never know how much that has helped just exactly when I needed help. You have kept me knowing that there is still magic and spirit and connections around me so that I could keep treading this trail. I hope that the new year brings much wondrousness and joy to you in blessing your generous hearts.

Chick & I will be closing out this year with a celebration of cheese fondue and more episodes of the West Wing (our latest passion, watching the whole series from the very beginning [thanks, Netflix]). We survived it, 2008, and we are looking ahead.

Ghosts of Alzheimer’s Past, Present, Future

Chick, Snowy, and I are exhausted.

I haven’t been able to post — or bring myself to post — these last days because I have been too overwhelmed or uncomprehending to relive or understand what we’ve been dealing with.

Snowy had some off days, then she had almost 2 days where she seemed to come back forward a few light years and understood what was going on and comment on the fact that she had an illness that gave her memory problems. She was lighthearted, smiling, happy. Chick and I felt the sun break out on our whole universe.

Then came what would be the prevailing challenges of the next days — Snowy woke up terrified, freaking out, in an almost life-threatening panic. As in days to come she swore there had been a man in her room telling her how horrible she was, how worthless, how no-count. Variables to follow included that she was not allowed to leave the room, that she had been accused of stealing things, that if she tried to leave the house, “they” would “get” her. She could not let go of the terror no matter how much we reassured her, showed her she was “free”, that there was no one there to threaten or harm her, promise her that if anyone tried to “get” her that I would take them out — etc. She felt totally trapped in the moments of freaking out and could not move beyond them. It made her chest hurt, her eyes pop, her hands grabbing like vises.

We did everything to show her that she was okay — that she was not imprisoned or trapped or shut off, that there was no one else in the house with us (other than the critters). At one point I took her hands and shuffle-walked her outside and had her lean against my car and look around at the neighboring homes, sidewalk, sunshine, folks driving by. She had frozen at the front door, squeaking about how she could NOT go out, that “they” would grab her and hurt her. I got her out, pointing out that no one was getting her, that it was a beautiful sunny day — lots of small birds were singing happily in the front yard tree, and I asked her to listen to them — and I walked her around so she could have some support against the smaller little blue car and look at the white car. The white car, and the idea of it, and the thought of its being close by, are a form of a bit of magic for her. She felt buoyed by the comfort seeing it gave her, and gradually the peace of the day got through to her and some of the tension with which her little body was wound relaxed.

One moment was saved. But the moments of fear/panic/terror recurred over and over and over and over. The focus of the bogeyman who had hold of her mind changed, but not the feelings of panic he twisted into her mind and jerked the shit out of her.

She also embarked on old behaviors of wanting to know where she was, how did that happen, where was her husband, how could he be dead – she was waiting for him, how come no one told her, she should have been told, she wanted to call “someone” and let them know where she was — but couldn’t come up with any “who” that the someone should be; we offered name after name, all of which she said “no” to. She missed her friends — but couldn’t name one name, and when we showed her the cards that had come in in response to the Christmas cards we had sent for her to “her” list of people, she stated that she didn’t know who any of them were. Everything she said she wanted we tried to do, only to have her respond that she didn’t want it.

She was very unhappy.

She slept, but then she spent long periods of “sleeping” not really resting — on the monitor we could see her sitting up over and over, smoothing her blankets or taking them off or putting them back on, lying back down still smoothing with her hands; and a few minutes later she was sitting up again, repeating the same behavior. When she would start sliding her legs over the side of the bed to get up, one of us was immediately there to give her a hand, help her to the bathroom (which is what that action usually meant). Sometimes she would sleepwalk through the bathroom visit, sometimes she was resistant to being helped but then still could barely hold herself up on her wavering little legs.

Sometimes she refused to go to bed, even though the hours ticked away far past her bedtime. The agitation that was controlling her wouldn’t let go, even as she drooped in fatigue.

Amongst this, in a few quiet moments while Snowy was finally sleeping, Chick and I celebrated Chick’s Christmas Eve birthday and, the following morning, Christmas. It has been several years since we’ve been able to do that. Snowy’s stages of Alzheimer’s has meant that this has controlled what was going on and whether there was anything those days to celebrate. Some years the stages included hateful spiteful mean outbursts that tore our hearts out and hurt feelings and tears (from us, not Snowy, whose monster Alzheimer’s left acting more like the Exorcist’s head-swiveling target). Those stages are behind us, but there have remained a few pockets of residue.

Randomly throughout these days, Snowy has abruptly gone from peaceful or sad or dozing to eye-flashing nearly spitting hisser. It takes one aback. Just a bit ago, Chick was feeding Snowy some of her favorite chocolate ice cream (one of the few things she will agree to eat) and things were going happily… until the last bite when she sucked it in and then spewed it out with a wild look and a mocking reaction to Chick’s trying to stop her. Chocolate ice cream poured out of her mouth down her robe and gown, all over her. She was furious that Chick had to change her out from the stack of laundry we had just freshly folded.

I came over to her with the pill that her doctor had just advised me to give her (we had called in for help and I was finally getting a call back). She immediately refused to take it, telling me to take it instead. We went round and round. I finally got the pill in her mouth and she spit it out. I got it in again and she sucked down down of her Boost to wash it down with, but instead, after swallowing some of the Boost, she opened her mouth and projectile spewed the pill across the room. I brought it back, got it back in her mouth, got enough Boost added in, and watched her until she did finally swallow it. I immediately told her what a good girl she was, and how proud of her I was, and I settled down on the floor next to her holding her hand – which she permitted. In a very short while she was calm and her face was sweet and soft – such a change. A little bit later she looked at me and asked in a tiny little voice if I was mad at her. I hugged her and told her absolutely not, I loved her so much.

We tell her and show her love ALL the time, and never more than through these days with all of this panic and change. We know that one of the most important things we can do is to wrap her with love and make sure she feels safe, even if she is not sure where she is or for sure who we are. It is not even hard to do this, even with bad behavior hopscotching through the days and nights. She is such a precious darling, who is so very scared about what is happening in her mind, TO her mind, who comes out of ’spells’ so grateful that we never falter with the love we give her and the love we show and share, crying in relief sometimes as she melts into our hugs.

We don’t know whether the virtually non-stop drama of panic, terror, restlessness, anxiety, agitation, fear, fatigue, whether these are the slipping into the next phase of her Stage 7, or whether her synapses are just connecting wrongly, or if her shrinking brain’s tatters are letting go of connections which then dangle and tangle with non sequiturs. We can’t  help but look back at the downward spiral that we’ve been on since the bad situation during the hospital stay recently. I honestly don’t know, we don’t know what to do but hold her tight in love and try to find the road out of whatever is scaring her at that moment.

So, I did call her doctor’s service and left word of what we were dealing with and asking for help, and the doctor did actually call back this afternoon and discussed the situation and the current meds and talked through some possibilities. She gave me some adjustments to try and some thoughts of what we would try next if/when this didn’t settle down the agitation. We discussed whether getting some in-home hospice care might help — she was totally in favor of this and said she would call in the referral next week when she was back in the office. We would then get a call from that group who would set up a consultation with us at home, and we’d see what could be done from there. We are not too proud or stubborn or deluded not to reach out for and accept help, especially from those who could help Snowy feel comfortable and as happy as she can be at this point in her life. It will be good for Chick to have this resource in her caregiving as she gets further along in her pregnancy.

We are exhausted, all 3 of us.

We are in hope of things that will help.

Chicken wings for Christmas lunch and other things that don’t make sense

Today (actually yesterday, Friday, since I’m late writing tonight) was a randomly odd day. It was the date set for the office Christmas party, which this year was to be a luncheon catered at the office — with the added bonus that we could go home after lunch.

Last year the party was thrown in the evening at a swanky country club for which one was to dress sparkily, but I didn’t make it. Going out at night, alone, to another part of town, for a social gathering with people with whom the strongest trait shared was that we all want to go HOME at the end of the work day, just didn’t do it for me. I thought I would go (ha ha — feeling like I could change my feathers) but “partying” is not a natural element for me. PLUS, Chick had just gotten home from weeks away in the NE, and I wanted to be with her ANYWAY.

So, I’m far more likely to ‘attend’ something if it is lunch at the office. I may have been the only one who was really pleased when the email came out, but somehow I think not. We are all, we current remainders, feeling a bit somber and tenuous, and the usual joking and jesting and teasing doesn’t crackle in the air just now. We are noting the figurative and literal empty chairs.

So… catered lunch at the office … sounded perfect to me. And then I heard “who” was catering –> a local chicken wings place. Hmmm. I immediately made plans with Chick to have pizza for dinner as I knew I’d be hungry after that. Not a chickeneater, no, not I, not since 2nd grade, and we’ll leave it at that. But even if I were, seriously — how ‘festive’ is it to serve chicken wings at the annual holiday party? And from one of our tenants who owes us a lot of money. There was speculation as to how many times the food would be spit in. Festive!

Came time for the party, delayed a bit for the late arrival of the feast and the set-up, and we were summoned to appear by the office intercom. I was near the end of an abstract I was working on and entering in to the new swanky database, so I wanted to finish, and avoid the herd. By the time I appeared, the tail end of the line was just starting along the L-shaped ‘buffet table’ arrangement. I picked up my plate and considered the choices laid out before me.

Hmm. A plate or 2 of some kind of shredded fowl, some bones showing. A steaming server of wings. 3 servers (not so steaming) of lasagne — I was told that 2 were of some types of meat and 1 was vegetable. A dish of strips of some form of lettuce leaves and croutons and some white salad dressing. A split steamer with “meatballs” in a white sauce in 1/2 and “meatballs” in a “cheese” sauce in the other 1/2. A tray of rolls. Some picked through pies and a cake. A separate table of ice, choice of plastic or styrofoam cups, a plastic jug of sweet tea and a plastic jug of unsweetened tea, a carton of orange juice, and about 20 large bottles of liquor in many varieties and colors. Hmm.

I passed over the shredded fowl, the wings, and the meated lasagne. The owners are big hunters of interesting thing, so I wasn’t sure what kind of “meat” might have interested them in their menu choice. I grabbed a tong-ful of lettuce strips and a ladle of white dressing. I took a small square of vegetable lasagne. I picked up 1 roll. My plate was embarrasingly empty, so I selected 1 each of the meatballs. I got a red plastic cup, filled it with ice, poured in 2/3 sweet tea, a couple of generous splashes of orange juice, and topped it off with more sweet tea since I had nothing to stir this together with. And then I sat down.

I found room at one of the 3 tables in the breakroom. There was a 4th set up on the other side of the glass in the mail area. I couldn’t tell who was having the most fun as it was rather a dampened down version of previous office lunches. I made conversation with the folks at my table, all of whom I like and enjoy, some of whom I haven’t seen since the laying off of hands last week. Finally I couldn’t put it off any longer and I ate most of the salad, carved some bites out of the extremely dense meatballs (which someone jokingly said were made from yesterday’s meatloaf). I attempted the lasagne but it was really not good. I’ve never had really not good lasagne before, and I think I will let this punch my ticket for that, if I can. The roll was nice and the tea/juice mixture was pretty good.

I tried to make them last so I wasn’t bolting from the room and spent an appropriate amount of time being seen and smiling and chuckling over jokes I couldn’t quite make out from the other end of the table. At this point in time, it seems to matter that one be seen being quietly smiling and agreeable, making no waves or even ripples. You could see recognition of this on almost every face dutifuly munching and smiling and nodding at each of the tables. There was no loud rollicking laughter as before. And I didn’t see a single person picking up any of the liquor bottles — although maybe that was because I was ‘late’ to arrive Somehow, I don’t think anyone did.

Finally I couldn’t push things around on my plate any longer without wanting to gag, so I slipped through some laggards making a 3rd or 4th foray on the desserts, and tiptoed down the hall to my office. I wanted to check that all was okay before I signed off and left. But, to my surprise, other people had slipped away, too, and were working and sending me things to work on, and no one was acting as if they were going to leave as we’d been ‘gifted’with. I put in another hour and then… well, dang it, I wanted to leave! I had several errands to run and time was a-ticking. I headed out.

Even with errands I was home in time to find Snowy up, although at 2:30 she was starting to peel the blankets off to go to bed. She was bright and cheery and open-faced, and her eyes were alive and thoughtful. Her skin was smooth and glowing. She knew who I was, she was laughing and smiling. She was articulate and seemingly plugged in to the day. Chick told me that Snowy had asked to look at some of the various picture albums we keep handy, and that that had led to some discussions about who people were (all of those family and friends that had been life’s center to her that she wasn’t recognizing or familiar with when she heard their stories). I sat at her feet and joked with her and share some time before she was no longer distracted and started peeling the blankets off again. It was hard to let her go as we so miss the times that she is lively and talking and joking and really seeming to enjoy life. But she was determined, and she is the most stubborn of us all.

Later, we could tell on the monitor that she had awakened and was getting up. I went in to help her as we figured she needed a hand getting to the bathroom. Instead she said she was letting the cat out (BG loves to hang out in her room, but usually she gives a little meow that only hyper-tuned-in Chick can hear, who immediately lets  her out). She was surprised to see me and had me help her back to sit on the edge of the bed and said perhaps I could  help her with something she was trying to figure out because she was kind of in a bind.

And then we proceeded to have an hour+ conversation, a good part of which Chick came in and participated in, all tied to the diametrically opposed situation her brain had her in, which she didn’t find contradictory at all. On the one hand, she wanted to try to get back to Tuscaloosa and couldn’t figure out how to do it, should she take a bus? On the other hand she was in Tuscaloosa and couldn’t possibly manage something as monumental as moving away to come here… even though we told her repeatedly that she’d already done that and had been here for several years now. We weren’t arguing with her or trying to upset her, but we responded to the questions she had. Even as thoroughly out of sync as she was, she was being so articulate and was trying to make her brain work and trying to express a logic that only followed from the leaping over the shreds of her mind to make the conclusions she was expressing. She struggled with finding the right word or phrases many times, and stopped herself short to avoid getting annoyed with herself. I would tell her, ‘that’s okay. Can you think of another word?’ And sometimes she could, or at least near enough we could guess.

When she boiled down what she wanted it was to go to the cemetary to check on  my father. She sobbed a bit at this, sharing that it was just not right not to live in the city that has the cemetary that your husband is in. That really pulled on our hearts. I think this was the 1st time since we moved  here that she has thought of wanting to go to the cemetary. We immediately offered to plan a trip “north” to get her there. ‘Oh, going once isn’t going to mean anything,” she said. “I want to be able to go a lot.” I told her we could go when she liked, maybe drive the 9 hours one way on a Saturday, visit the cemetary, spend the night in a motel, visit the cemetary again in the morning and drive back the 9 hours on a Sunday. I said it would be a bit of a haul to go evey weekend but if she wanted to go every month, we would definitely try to make that happen. At first her eyes lit up but when she saw we were earnest and ready to go buy gas and plot the route, she began pushing back and saying to let her think about it. I think she just wanted to know she could go; it’s a question, really, of whether she would go. She gets worn out going to the beauty parlor once a week. That’s reality, and most of the time she is not living in reality.

Then she told us that she wanted all of her friends and all of her activities, that she was BUSY and there was lots she was involved in. That’s when we knew she was in a “some-when”, her time elevator was stopped on the floor of an earlier existence. When we asked her which friends she wanted to see (we were already mentally trying to figure out how to hook her up), what activities she wanted to do, she could not pull out one detail. We named names of people she  had known ‘forever’, and she didn’t recognize any of them. She didn’t know what activities it was that she was missing. “I’m old now, so I can’t do them all anymore.” We told her to think about it and let us know when she’d decided she’d like to do, and we’d make it work. She has no idea; she couldn’t even name the groups that she’d long been involved with and had presided over.

Chick suggested later that Snowy was really missing herself (as are we!). We miss her and the center of the universe that she was to our family, the spinning wheel of activity and connections and caring and feeding and busy-ness, where she was never idle or ‘just sitting’ one minute from her getting up early in the morning until she went to bed with everything completed at night. No, that person isn’t here anymore.

But tonight was a tiny glimpse of that energy and keenness and it was enchanting even while it was a bit heartbreaking to watch her come to the reality that her husband has died and left her behind to figure out what is going on with her. She was not despondent as she advised that she was going to think on things, she had a lot to think about, and she would consider it all after she got some sleep. She was worried about whether she could keep up with “our football team” from here, but we reassured  her that we had, all season long, a pretty darned good season it had been, too, 12-1 so far. She raised 1 finger and tried to think what the question was that she had. Without needing the question, I answered her. “We beat Auburn this year.” “AH,” she said, with a relieved smile. “That is what counts.” And with that, with the whole long discussion over many subjects already fading, she was glad to be rolled up into bed (we say, “Roll Tide!” as I lift her legs up and to the center of the bed and then adjust her back onto the center of her pillow) and kissed good night and we exchanged, “Sweet dreams!” as I left the room and she fell immediately to sleep.

She won’t remember any of this tomorrow (later today). But  that’s okay. It’s beauty parlor day and that will be sufficient, that and gazing at the colored lights shimmering on the Christmas tree.