Thursday, April 19, 2007

Brain Surgery, Day Seven

This will be my last post from Denver on Mother's Brain Bleed. One week later she is doing amazingly well. She was happy this morning because she had finally gotten her hair washed, and could begin to see the magnitude of her scar-starting on her forehead, above her left temple, then all the way around in a loop that ends behind her left ear. She is amazed, and rather proud of the head scar. She was less happy to discover that she has stitches beside, and below her left eye, but came 'round to a more philosophical point of view shortly. "At least I can see out of it, though it's still rather blurry."

She blows me away.

She will be going from the hospital to a rehab place where my sister-in-law's sister-in-law. Glenda, is an administrator. She will look after Mom well, I know. Mom is not happy about this, but is resigned to going. She knows that the schedule in rehab is a good deal more rigorous than her schedule would have been if she came right home. On the other hand, her depth perception and balance are off, not to mention her double vision, so she's also scared to come right home from the hospital. (Thank Goodness!)

Dad seems to be into denial about how close a call this was, and resentful that I can understand what the doctors are saying better than him (he's pretty deaf, too). It makes me sad that we don't know each other well enough to discuss what's going on, but I see that he, quite literally, does not have the understanding of how to discuss painful stuff, and has no interest in trying. It's too scary for him.

I recognize control issues on both sides-his and mine-and know that I have to let go tomorrow, and pack up and leave early Saturday. I know that he-and my brother Luke who lives nearby-will do fine without me, but letting go will be painful. I'll do it, of course, cheerfully and with great love to Mom, then go out to the car to cry.

I know that in my own way I am as strong as my mother, just more in touch with my feelings. And I know that my parents lean on each other, after 58 years of marriage, and am glad they have each other, no matter what their past may have held.

I won't write again until I get home and resettled, but must add once again how much I have appreciated your prayers and support during this painful time, and how much they have meant to my mother, as well.

Blessings, Margo

Monday, April 16, 2007

It's very late, and I have the "first shift" at the hospital tomorrow, so I should be long asleep, but I wanted to say that my mother is doing much, much better today. Her bad eye has opened a crack, and she can see out of it some-thanks to the best eye surgeon the hospital has, who just happened to be passing through, 20 minutes before she was rolled into surgery. He made it joint surgery immediately.

She had her glasses on and hearing aide in when I got there, mid-afternoon-Allison had the first shift today. Luke and Mary arrived shortly afterwards, so I left to give them some time alone with her. When I returned an hour later she was up and sitting in her chair, having walked around her room with one of the physical therapists. Tomorrow, if she continues to improve, the powers that be will take out at least one of her IV's, and her catheter, and maybe even move her off the floor to a regular med/surge hall.

She still gets confused a bit-a while after the nurse told her that tomorrow shed would be able to use the toilet, heavily stressing only with a nurse helping. Twenty minutes later she told me she could go to the bathroom alone tomorrow, only to have all of us, Luke, Mary, and me leap down her throat with a chorus of NO's. Oh yes, she said, now I remember.But she was joking about what hair style she'd have to have for Catherine's wedding two minutes later, as I carefully combed some of the blood out of her hair. We had her laughing uproariously with a bunch of silly suggestions.

It is almost impossible to believe this is happening so fast when four days ago we thought she would die of a brain clot or the surgery to relieve it. As for my father, I recognize how scared he is of strong women who stand up for themselves against him. It doesn't happen often to him, and he was quite shaken by my strong and immediate response. Today he has reverted to type, acting as if the whole thing never happened. I can guarantee that I will not ostrich it away in my life, but I need time and space to look at the whole experience-and the dynamics which still can engulf me all too quickly if I do not work to stay focused, clear and open to Spirit.

My mother love him, without really understanding what she has missed by staying with him, and she has grown more slowly than Catherine and I have, but she has changed and is more able to take him on when it is important to her. (Margo and I are going to Taos: you'll be on your own for four days. She allowed him no comment and gave no explanation, and he said nothing back to her, though he hates to have be alone to cook for himself.I am so tired I am rambling, but wanted to let you who have become such a support system for me with your comments and concern, know how things are progressing.

Blessings, Margo

Sunday, April 15, 2007

Brain Surgery-Day Th\ree, but One Day Late

I want to thank everybody again for prayers, good thoughts, energy sent across the county and the Pond for my mother, who continues-much too slowly for all of us-to recover. Her personality is there-stubborn, complaining, but wanting to do stuff for herself until she tires. And her sense of humor is intact. She will catch up, I think, to her old self eventually. Thank all Holy Deities, male and female, and all else the is out there for healing.

She has always seen herself as "not much more than a housewife" and as not doing so great with her kids. Luke and I gave her problems in our teens, and she has been worried a lot about Catherine more recently. And to be blunt, it was not a happy home to grow up in, nor a happy marriage for many years (though after 59 years they have worked out a way of living together, with no intimacy of any sort, but acceptable companionship). But I see her a a woman as strong as an ox, an amazing example.

In the last 4 years she has survived cancer, radiation, chemo, obstructed bowel(twice!)-both of which nearly killed her, and now this fall and brain surgery. All this with her personality and odd sense of humor intact. So what if she's still confused about where she is at times, and looks like she went 10 rounds with Mohammed Ali in his prime. She is quite incredible, and is obviously where I got what ever it is that keeps me crawling back from depression, abandonment, and ten surgeries in fourteen years!

She even called this morning with a request for a sweater, books, a pad and pencil, and a hearing aide battery. Considering one eye is so swollen shut the doctor cannot pry it open, and the other is a barely a slit, and wearing her hearing aide on her swollen left side-just under her surgical scar-is painful, I'd say she is plugging along quite well, all things considered. She's my hero.

Of course, now that the crisis has abated a bit, family dynamics has raised its ugly head. Both Luke and my father want control of her medical situation- a repeat of two years ago which climaxed in a shouting match in her hospital room. The doctor sided with my father, after which Luke stayed away for over six months (and remember, he's the one who lives out here) I don't care who controls her medical info, I just want to make sure no errors are made in her medical care-which I have painfully come to see as wanting a kind of control myself.

Where I need to be is willing to help where ever I can, even though she tells me she does not want Mary and Luke to visit at all, and Allison (my dad) only for an hour or so a day. And when she begs me to stay with her, to tell them that, I have to tell her gently that I cannot do that-they love her, too, and are worried and want to be with her. She hurrumphs, and calls me a disobedient daughter, then smiles a bit. When they are there she keeps urging then to go, and I bite my tongue to say nothing-because they do love her and want to see her as much as I do. She has never told me to leave, and I think it's because I have a nurses aide background (two or three lifetimes ago) and am used to dealing with most anything (except my family) due to my HIV testing and counseling background, working in prison. I can anticipate her needs and advocate. gently, to her nurses.

Last night we were all there when my father and I had a big go around. Apparently he felt I was not moving away from her fast enough when she needed to sleep (my suggestion in the first place). I was murmuring to her about taking slow deep breaths and relaxing, and was completely surprised when he jumped up, marched across the room and hit me-hard-on the shoulder, ordering me away from her. I moved away all right, enraged, right over to him. I had completely lost it. "You will never hit me again, " I hissed at him. He leapt up balling his fist, obviously afraid I would hit him back. I would never do so, and the fact that he was afraid of me tells me how little he knows me. "You will never hit me again, I said loudly. He refused, just as loudly, to go into the hall so I could tell him why I had lingered for no more that 30 extra seconds at her side (She and I had worked out a way that I helped her relax into sleep, a 30 second relaxation technique, that she liked) and I was so furious I found myself wanting to hit him back out of sheer frustration. My brother helpfully chimed in that I should have moved sooner, and this was not to place to argue it out. Flames to the fire. I wanted to slug him hard enough to knock him out (something I learned, by the way, in boot camp before I worked at the prison, and wasn't half bad at).

Instead, of course, I took several deep breaths and moved my walker to the far side of the room, where I sat flashing on the three times I saw him hit her, and the time he pushed her so hard that she cracked her ribs so badly she spent a week in the hospital, something Mom told me about quite graphically later. And the number of times I'd been hit, too.

On the other side of the room he was yelling at me that it was my fault she fell (she had insisted on giving me her bedroom and was sleeping on an expensive blowup bed in the living room when she fell on her way to the bathroom) and I was to get o ut right nowand be on the next fight out of Denver because I was not welcome in his house.

I took several slow deep breaths and looked across at this frail old man with emphysema, so totally unable to do anything with his anger that he had to hit and threaten and could not even look me in the eye, or consent to go into the hall so I could explain why I had not moved away from his wife in his time frame. I struggled, somewhat successfully, to let go of the anger, to see his fear at her illness and his feeling of loss of control, and his lifelong unwillingness and inability to deal with feelings, happy or angry or sad. For whom intimidation, withdrawal into his own head, and occasionally hitting, literally and figuratively, was the only way he has to express what he feels, and I felt unbelievably sad for him.

I said, quietly, but so that he could hear me, that I was not going home on the next plane, that Mom had invited me to stay, and I would, and he must never hit me again. He did not respond, though I knew he heard me. At that point Mary, the eternally chipper one, chimed in that we were all invited to her brother and sister-in-law's for dinner, and she would not take no for an answer, so we kissed Mom good night, one by one and put on our happy family faces as we trooped off to Scott and Glenda's for a very nice dinner, most of which I could not eat. Dad and I had separate cars (remember, I will not drive with him) and came home and went to bed without speaking.

This morning, as he was leaving for the hospital, I said we had to talk. As he looked away, I calmly and quietly apologized for my anger and ill behavior the night before, explained what I had been doing with Mom-something we has worked out together before the surgery while he was not there (he left at 2:00PM the day of the fall, and did not return until I called at 8:00 PM to tell him about the surgery. He was already in bed at the time) and that I needed him to know he was never to hit me again. He kept looking away, silent, until I told him I needed to hear it from him, and -finally- he muttered that he would never hit me again. And I could let go of a good big knot of my anger, finally. But not all of it, of course.

Reading this makes him look like a constant abuser, and he wasn't. It usually happened when he'd had too much to drink, and (I believe) the abuse tapered off as we left home, and he began to drink much less. I do not know this for sure, and of course, we did not call it abuse 25 or 30 years ago. Mom truly believes that she provoked him, and, though we have talked about abuse as adults, she still only half believes that how ever she provoked him, hitting her was abusive. She has told me he hasn't touched her in over 20 years, and it's all in the past, when we didn't know about abuse anyway, and it is a subject I am not to bring up in front of him, ever. I will respect her request, but smolder because it is just one more secret we keep as a family full of secrets and disconnection.

I do really feel badly for both of them, caught in a dance of 59 years, unable to do much more than hold on, each wishing for a life the other cannot give. And I know I can give him nothing, and my mother only my occasional presence and laughter and maybe-someday-before she dies, onelast trip to Taos.

Now I am off to the hospital for my shift, and will stay in a waiting room during the 2 hour rest period, while Dad comes home to rest, and we'll all be there until Luke and Mary arrive, after a day of skiing. Then back here, to our bedrooms, and again tomorrow, when I have the early shift...

And I just hope to Goddess she continues to return to us, to heal from the fall, and we can all help her in some small was, despite out very different out looks.

Blessings-and I need them- Margo

Saturday, April 14, 2007

Brain Surgery, Day Two

My mother is alive and reasonably compos mentis in Littleton Hospital today. Thank Goddesses. God, The Light of the Universe, Allah, and anything else out there with positive powers. And thanks to all who prayed or send thoughts and energy or whatever spiritual practice anyone does. Today was also long and difficult, but so much better than yesterday that I am not complaining at all.

She actually looked worse when I got there around noon, eyes blacker, bruises running down her left cheek, occasional bloody "tears" running down her face from her swollen shut eye and neck and a "turban" of gauze which has all sorts of fluids leaking through. But she was propped up in bed complaining about all of this, sounding very much herself.

Dad had been there in the morning, Luke and Mary were there when I arrived, trying to "cheer her up" with lame jokes (Luke) and optimistic chatter (Mary.) I know how much Mom hates both kinds of attempted diversions, because she told me so yesterday morning after the possibility of surgery came up. She said it took too much energy to be polite to them, even though she loves them dearly. They finally left about 12:45 PM, and Mom slept.

It was clear she'd had a bad night, for she had long gauze strips tied to her hand and feet, and a wrap around her chest securing her gently to the bed. Luckily Allison (my father) didn't notice, and I learned later from her nurse she had been very agitated during the night, trying to yank out her catheter, and climb out of bed. After she kicked a nurse in the face, they had to restrain her. She would be so horrified by her actions that I'll never tell her this.

I spent the afternoon getting her off to sleep, so that as soon as she started snoring, some nurse or tech could arrive bedside to do something to wake her up again. Sometimes hospitals make no sense to me at all. Actually most of the time. She has the added burden of being profoundly deaf, and was unable to use her hearing aides. For her to understand people they had to lean close to her left cheek (the one blood was trickling down from the smashed, sutured eye) and speak slowly and clearly into her (still bloody) left ear. Nobody really did that except her nurse and I.

So I spent my afternoon hanging over her bed, translating what the doctors and nurses and dietitians were asking or telling her. At one quiet moment she asked me why she was so tired, and I leaned down to reminder her that she had just had major emergency brain surgery last night and was entitled to feel a bit spacey. It came like a revelation to both of us. She had not taken in all the explanations about surgery during the day, and I couldn't figure out why she had seemed so confused about it all afternoon.
Her co\mment? Gee, I am so glad to know it's over, I've been worrying when it was going to be done! She asked pertinent questions-who did the surgery, what was done, why didn't she remember (I told her it was because she was so heavily medicated, not that she disintegrated in front of my eyes over a terrifying 40 minutes), and no wonder her head and eye hurt so much last night. No wonder indeed!

So for most of the day her personality and sense of humor was intact, though she did have trouble understanding what other were saying to her, mostly because of her hearing, or lack there of, I think. Around 5:00 PM, however, she began to go down hill again, getting agitated and trying to climb out of bed. I began to experience the anxiety and fear of déjà vu. Luckily the neurosurgeon (who we all like a lot) arrived and said this happened to many elderly surgical patients. As the day ends they seem to recede or lose ground, just like Mom was doing, Then perk up again in the morning, with no memories of having had a bad evening or night. They sometimes refer to it as Sundowner's Syndrome.

After a shockingly brief debate with myself about staying to make sure she ate dinner, I decided to spare myself a second ordeal (though I could tell she was less confused than the night before) and bugged out. I do believe I am finally living out the recognition that taking care of me take precedence over taking care of others now and then. It's a healthy step which I took with no second guessing myself, and I am pleased.

Tomorrow still unknown. We seem to be living hour by hour at this point; at some point we'll move to day by day. She is still in critical condition, and quite unaware of the struggles which may lie ahead. But we had her for several hours today, loving us as we do her, and I am grateful.

Blessing on all of us, Margo

Friday, April 13, 2007

Brain Surgery, Unnexpectedly

Brain Surgery, Unexpectedly
It's 1:00 AM Denver time, and I am just back from the hospital, where my mother had emergency brain surgery to remove a blood clot six inches wide and a third of an inch thick. She also had major eye reconstruction surgery. She fell at 5:30 AM, on her way to the bathroom, hitting her left eye on something hard-we can't figure out what. It was clear it was bad immediately, but we were more worried about her losing the eye than anything else.

We were wrong. I followed the ambulance to the hospital, and after some tests, she was bitching about her pain, and saying only the money must keep the Denver Nuggets endure such misery, and indeed, she did look rather like a stitched up goalie. Magnificent black eyes and ragged line of stitches and all.

Then the CAT scan results came back-subdural hemaetoma, and a big one at that. Scary stuff a brain bleed.

The neurosurgeon said that since she was lucid and joking though excruciating pain, he wanted to take a wait and see approach. A second scan was essentially the same and she was lucid (though drugged and by then very unhappy. But still dictating lists of things for Dad and me to accomplish. All seemed okay. I came home for a couple of hours while Dad spelled me then went back about the time the second scan came back. The neurosurgeon said if it was his mother, he'd wait until after a morning CAT scan, and we'd see how she was doing then. Dad went home.

Mom was restless and uncomfortable in the bed but still talking to the nurse and me for another hour or so, then things began to slide downhill. Within an hour she was talking gibberish, trying to climb out of bed or yank the foley catheter out, reaching out for something or someone across the room, deteriorating so quickly in front of my eyes that, as I talked to her calmly and gently held her(only) hand down, in a small spare corner of my mind I was panicking more than ever before. I am good in a medical crisis, so I sounded calm and reasonable, reminding her over and over again where she was, what had happened, and why she could not get out of bed.

The nurse was very helpful as we tried to restrain Mom, but clearly it was time to call the doctor who arrived quickly and took one look and listen to the woman who had been joking with him about ice hockey at 4:00 PM, who was incoherent at 7:00 PM, and said he needed to operate. I called Dad, my brother Luke who lives in the Denver area, then Meg and my (emotionally fragile, bipolar) sister in Michigan, and a friend or two. The eye surgeon arrived and after looking at her eyes, announced he would be piggybacking on the brain surgery because there was a lot wrong with the eye. I am unclear about her eye problems, because I was too busy alerting the troops and praying to the Goddess that Dad and Luke would arrive before they wheeled her away.

Luckily they both did, along with Mary, Luke's wife. The surgeon pulled no punches-there were (and still are) no guarantees about her even living through the surgery, let alone what might happen if she did. We watched her get wheeled away, then retired to the waiting room Then I cried, despite the family taboo on emoting over anything. Dad got annoyed, Luke walked off, and Mary began to talk about how similar Dad and Luke's responses were-I cried until I was ready to stop, and we waited in a suspended animation of misery, for three and a half hours, until the surgeon reappeared.

Yes, she was alive, and breathing on her own, and still restless (now a good thing, because she was moving all extremities, and even almost semi-coherent in flashes. But, he added there are still no guarantees and he expects her to be very confused and more restless for several more days, then she'd need to go to a rehab place for a bit. If "nothing else happens"-a stroke, heart attack, thrombosis, and the list goes on.

But she's alive and fighting to get out of bed and we got to see her briefly after nearly two more hours in Recovery. She looked terrible, but she was telling the nurse where her chapstick was here at the house, and to go get it while she got up out of bed. We all had to give each other exhausted smiles, because, despite her confusion of place, she knew what she wanted and where it was-and she wanted it now, please.

Dad takes the first watch in the morning, and I'll go back about noon-it's almost 2:00 AM now, and I must go to bed. I just needed to write it down, share the fear and pain and struggle and hope and love today brought.

Blessings, Margo

Sunday, April 08, 2007

Made It to Colorado!

Well, I arrived at my parents' house outside Denver at 1:30 AM, which is 3:30 CT time, then sat up for another hour talking with my mother who (naturally) was up and waiting for me. Just like old times! I finally fell into bed at 2:30(3:30AM CT time), and read for about 30 seconds before I passed out.

This morning I was willing to take under consideration that I might not have been up to the journey I took yesterday. I could barely get out of bed! Everything hurts, legs, arms, back shoulders, and head. But I feel triumphant! I made it! I ordered wheelchairs to go from one place or another, I sat in first class for the longer of the two flights (one of the people helping me board stuck me there, and there I stayed, even though I confessed to the first class flight attendant that I was a second class ticket holder). The food was good-I've never flown in first class before. It is nice, I will say!

My mother is full of errands and activities for me, with my father offering to drive. No thanks. Not one of his children or grandchildren, or great-grandchild(Myla) will ride in a car with him, which is the major reason they are moving to a retirement community-so he can give up the car. I want to add that every year he passes his drivers test, because he is concentrating. It is when he is out on the roads of this very busy, confusing area that he has a tendency not to concentrate. Come fall, his license will be suspended by the eldest of his three children-me, alas. My siblings assigned me the job, but promise support. We'll see.

The most exciting thing is that Mom and I will be going to Taos, NM, Goddess willing and her health hold up! It is one of the most beautiful places, and she loves it because she spent summers there in the '30's and 40's. It is also the place that she fell off a horse, had her arm set wrong, got gangrene, and eventually had it amputated. I'll tell the story in it's full, family folkloric version some other time.In Taos, we drool over everything from paintings to jewelry to pottery to Taos Mountain itself, sacred to the Tiwa Tribe, many of whom are still pueblo dwellers. I can't wait!

I'm going down for a nap now, but will try to keep updating as I can.

Blessings, Margo

Friday, April 06, 2007

Still Living and Moving

I have neither disappeared into the real world, nor sunk to the depths of depression. I have alternated between being busy and tired. My friend Mark, of http://journals.aol.com/makemarc/SoberGayEx-Con/,put put it best in his comment on my last entry. After I enumerated the ways I am moving outward, he wrote, sardonically,
" What? You're not training for a triathlon? Gee Margo, some people are so lazy!"

As always he has a good point, and I must be very careful about not rushing to add more "interesting" activities to my life, at least when I have so many "have to" ones-physical therapy. doctor's appointments, regular therapy appointments, some of which are an hour's drive away. Of course the problem is that the interesting things-like yoga, and "elder-sitting" a woman at a local nursing home are the ones I want to do! And I can't wait to start doing Gentle Touch/Guided Imagery at the hospital! And I am so grateful to have come this far.

Since I mentioned Marc, I may as well plug his Blog. He is a real writer, thoughtful, articulate, humorous, a passionate street warrior with a trash pick, doing daily battle with the trash on the streets of Hollywood, among a number of other things. He has been a clear minded support for me during difficult times because he can cut through my fog, straight to the heart of the matter. I appreciate him a lot, and hope others will add him to their daily reads, too.

As for me, I am 268 journal entries behind, and beginning to recognize I'll never catch up if I comment, though commenting is part of the journal experience for me. And I miss what is going on in people's lives! Perhaps I will catch up some in the next couple of weeks at my parent's house.

My mother called a while ago to ask me to come "help sort" through stuff for the move into elderly housing they will make this fall. I agreed immediately, of course. The only problem however, as she well knows, is that I can't lift or carry much because of my shoulder, she can't lift or carry anything because her only hand is gnarled and frozen from arthritis and being overworked for over 55 years, and m father can't lift or carry much because his emphysema has worsened a lot this last year. We'll be quite a trio!

Actually, I suspect my mother just wants to look at her stuff with me nearby to listen to stories and decide what will go to who when they move into a smaller place. That I can certainly do, bad shoulder, walker and all. I serve as a kind of permission giver for her, though I'm sad she needs one. I tell her gently that it's okay to send Great Aunt Leila's hand embroidered napkins to Goodwill, and sell some of the silver we kids don't want to polish for the rest of our lives, as she has dutifully (and resentfully) polished for over 60 years now.

My life seems so much less encumbered than hers, less to polish, to clean, to insure, to worry about. I also understand she has a lifetime of possessions that she has polished, cleaned, insured and worried about, and letting go will be wrenching. And I must admit I have one or two items myself-mostly artwork-that I plan to posses as long as possible, which somehow also makes them possess me. But nothing I have to polish!

I am taking my computer west with me. I have learned that, while they have steadfastly refused to touch a computer for years, claiming they have no need of one, somehow they always have computer tasks for me when I get there. I see them for two or three weeks a year, but they cheerfully save up their tasks for me to do on dial up!

All this means is I will be online some while I'm there, so I'll look for you, gentle readers, and once again return to J-Land a bit more.

Blessings Margo