predawn light - where the sun will be when it does come up later
Even on this morning when I could sleep in, I didn't - up at 6:30.
Dave and I didn't do any valentine type things yesterday. The closest thing to a romantic moment was when we drove Gabe over to a friend's house around sunset. It was so pretty with the snow drifts and snow devils blowing - the clouds rimmed with gold and pink and clear blue skies as a backdrop. We did say "happy valentines and sorry I didn't get you anything" to each other at least a couple times. And I did make a show of the fact that I had bought him a $50 Home Depot gift card when I was in Giant Eagle earlier just cause I thought he would like that.
Here it is 7:30 and no birds at the feeders! It is -10F this morning. They must be sleeping in. Oh! I just saw the first arrivals - a little flock of goldfinches.
Thinking about how in the past I have defined myself by others in my life. Most of my life if someone asked me about myself I would always bring up my brother - that he was a quadriplegic. That was a part of who I was too. And later after we moved next door to them I defined myself as being a caregiver to my parents. A lot of the time now I define myself as a grandmother. I seem to define myself by who I care about. I don't know if that is just codependency on my part or is this how life works? This is how love works, but it probably is a big slice of codependency too. Now that there are less people for me to care for (the grandkids are getting old enough they don't need that much from me) I want to define myself as "myself" more. Make an effort to be "me". What got me started on these thoughts this morning was that I read my LJ profile and saw there how I define this journal, which is kind of how I define myself. If I was to write a new profile for the future, what would I write?
Today - going to stay in most of the day I suppose. Bitter cold. I have work to do and jewelry that needs listing - I will post about that later I'm sure...
"Anna" style ring - sterling Listing HERE
My one little listing for today.
Just stayed home working on new things today. Thinking about the fact that today is the anniversary of mom's passing - 2 years now. It's been two years since I have started my post care-giving life - which was always supposed to be "my future perfect world". I am grateful that I am in the midst of something less stressful now - or maybe it is stressful but in a different way - not life and death stress anymore. I really don't spend time fantasizing about how I want my life to be different like I used to - or planning what I want to do someday. I feel like I am In My Life now. I miss mom. I miss dad and I miss John and if they were still here there is no question that I would go back again to the care-giving life with them but I'm glad I am in a new phase now. Everything in it's time...
pots by the road waiting for someone to claim them tonight
Back in the days when I was taking care of mom in the house next door I set myself a project of having a little garden on the back patio. But Jules has no interest in gardening or plants and I have lost interest in gardening too so all the pots have just become junk in the way over there. Tonight Dave and the grandboys worked on moving some other trash away from the house and I sorted through the pots (saved just a few) and set all the others out by the road in hope that someone would like to take the lot. I was afraid that someone would come and pick through them for the best and then leave the more ordinary ones so I would still have a problem getting rid of them but after about an hour 2 women stopped and asked it they could take all of them. They have a friend who plants seedlings and then gives them away and she would appreciate all of the pots. I was so happy!
In June of 2009 Rossy and I moved some lawn furniture onto the back patio and set things up. I dug up the ground beside the patio and planted a big packet of mixed flower seed. A major element was the 3 umbrellas that I set up to make some shade so that's the name that Rossy gave it. Here it is in it's first year:
the 3 umbrella room in it's heyday - august 2011
And here it is in it's last year - March of 2012 - the year mom died. I had minimized to only setting up one umbrella that year:
At first I had put the tag "happy" for this post cause I was happy that I found a home for the pots but now I feel a little sad - not from saying goodbye to the pots but from saying goodbye to mom (and dad, in my mind) and the time I spent over there.
Last night the grandboys and I did a trial run with the new 5 bike rack and were able to ALL go together on a bike ride. Triumph! On the way home we were all in such a good mood (which doesn't always happen with 3 sibling boys). Sebby is very good about making up long Latin names for things and pronouncing them correctly. What made everyone laugh was him trying to teach me to say these words and I just could not do it - they all ended up with pipotimus, or mimoutimus or something like that at the end when I tried to repeat them. I could get the first part but by the time I got to the end of the long word it would just degenerate. I was trying my best - they thought I was trying to be funny though - so it was funny.
I am really disappointed right now that I’m not done (and probably won’t be, for many more months) with all the work that it will take to get my life back in order after moving next door 6 years ago to take care of mom. I know it is “my fault” that I have so much clutter to deal with – I am a person who has a hard time getting rid of things and I haven't kept up with the organization of my things as time goes by – I end up making piles of things that I then don’t deal with. I really want to CHANGE that about myself - I AM changing that about myself but there is such a long road ahead of me to get this mess in order it is very discouraging. When mom passed away over a year ago I thought I would at least have my life back within a year. I SHOULD be done now. I am seeing that it might take another year (six months if I am very diligent) before I have my life back totally and I am not dealing with this backlog of stuff. I never want it to get like this again. Turning 60 last summer meant to me that it is time to get my belongings in order so when I do “go” I don’t leave a big mess like mom and dad did. I want it to be easy for the people who come after me.
Ha - now I reread this and the phrase about having "my life" back again. Dumb - cause THIS is My Life. This is my life right now and I am living it. I can't help but look forward to not having to deal with any more of this old clutter though.
OK – sandwich eaten – time to get back out there…
I have started a new round of trying to clean the basement. That desk on the right is my focus at the moment, but I can only do it so long and I start to feel desperate and need to get away. It was piled up over the top of the back when I started a week ago. That used to be my jewelry workbench back before we moved next door to take care of mom in the summer of 2007 and then it just became the ideal place to put things I cared about but didn't need at the moment. Unearthing so much stuff I don't know what to do with. It used to seem important but after this many years of disuse it doesn't seem so useful any more. I hate this kind of work!!! But I decided I finally just need to make it my first priority. I can't seem to do the thing that so many people advice - work an hour, or a half an hour a day at it. It just doesn't happen. I must be an all or nothing person. I need to get immersed in it. And so I am. I will give up listing things on etsy and zibbet till this is done. I found this poem. It was written about a month before dad died so it was probably inspired by walking across the yard one night. I used to walk over every night to check on him and mom and the worker that was there.
Nearly done with fixing up the back room. I'm going to put one more touch up coat of paint on the doors and the window that connects into the house and then I will be done with assisting Jules and will start fixing up our own house next door and moving.
I go back and forth between feeling depressed and overwhelmed and feeling hopeful and excited by the future. I was thinking though, it hasn't even been a year since mom has passed. I have devoted so many years, been so involved in caregiving since 1999 when we moved next door to help "the old folks" and brother John, and my caregiver role is gone now. This job (lifestyle) of living for myself seems so unimportant and trivial compared to keeping someone alive and healthy. I'm still feeling my way in this territory, trying to find meaning in my life. I end up going back to bed many times a day and have very little energy for this move. When we moved into this house 6 years ago there was an important reason to do it - mom needed us. Moving back again doesn't have the same purpose or urgency. I hope I can do this. I doubt sometimes that I can. Though I know I will...
"Thaw" pendant - sterling, white boulder opal, white cz, white mother of pearl and white moonstone. Listing HERE
I had quite a nice day today in spite of feeling sick with this cold. Just puttered all day - laid down a few times to rest. I made this pendant and did some enameling too. Dave and Johnny took the grandboys to the First Night fireworks in Oil City tonight. I thought I might go too but as the time to leave approached it felt like a relief to stay at home instead. I stayed in flannel PJ's all day with a quilted vest over top - my favorite outfit now if I can get away with it.
New Years Eve. A time to sum up the last year and think about hopes for the new year. The biggest 2 things that happened last year were holding a party for mom to celebrate her 100 birthday and then 6 months later helping her leave this earth. I'm still getting over that - changing my mode of life from a caregiver to what? I am enjoying more time to work with my jewelry and feeling more like a real "artist" (artisan?). But there are adjustments to figure out - how long to work each day, how to be disciplined without being obsessed, how much do I need this to be about making money and how much do I want it be about the joy of creation? This coming spring we will be moving out of mom's house and Jules and his boys will be buying it and moving in. Dave and I will move back into our old house next door. I have big plans to fix it up the way I want. Painting the rooms colors that I like (when we moved into it 13 years ago we painted everything bland white just to move in faster), doing things to the yard - moving some of the plants from here to there since Jules wants no plants to tend. Getting rid of lots of STUFF and organizing what I have better. I will turn 60 this coming year. I feel like this is a milestone, more so than any other age I have come to so far. I don't feel old - I feel strong actually but I feel like I have to admit that my time on earth is limited and becoming more limited all the time. I don't want to waste any more of it. I need to give up thinking that all the stuff I used to think I would get around to doing will get done - it won't. I need to clear the clutter of dead dreams out of my life. For once I feel like I am stepping through a new doorway this new year.
woods trail this morning - beautiful sun!
This morning Berdella and I walked at McKeever again. It was wonderful to not have to worry about getting home by 9 or 10 in case Jill was sick and couldn't come. Freedom! ( Here's some more photos from the walk )
All that is left is words now – words – words and tears. Hope lays in the dirt, no one wants to listen to hope anymore. This disease took her away bit by bit - her memory, her interests, her plans, her control, her words, her thoughts and gestures, her smile, her ability to eat and drink and now her ability to breathe.
I have heard the pain of death compared to the pain of childbirth before and I see it so clearly now with mom. She is giving birth to her spirit right before my eyes. It is not easy for your body to let go of your life. The body struggles to hold onto the infant spirit – won’t let go of it. Grasps it with every ragged breath, every heartbeat. I want so much for mom to rest and give up this struggle but I know then she will be gone, gone, never to return. When I actually think of it I can’t bear it. I can hardly bear to watch the struggle either. There comes a time during childbirth when the mother screams, I can’t do it! But you must do it. There is no turning back. The baby must be born (so we must die) and the body must be discarded, just as the baby discards his mother’s womb. Women have traditionally sat by the bedsides of mothers in childbirth encouraging them to bring forth a baby and we have also sat by the bedsides of our loved ones who are dying, encouraging them to let go, hoping for the ordeal to be over as painlessly as possible, offering support just by being present.
Later – evening.
Right now mom has gone into a more comfortable stage, thank goodness. Most of the day she seemed in some distress. It didn’t matter that she had her pain meds she still had her brow knit and her eyes wide open staring, breathing ragged and loudly. That was when I started to think about the childbirth comparison. Now though she has closed her eyes and the sound of her breathing reminds me of a quiet machine, pumping rhythmically instead of a distressed person. Her brow is relaxed – it’s only her lungs working and working. I wonder how long? How long can her frail body keep pumping like this? I would be exhausted if I was breathing like this. She is pumping out the last of her energy, the last of her life.
Sunday. Sept 9th.
Last night and today mom seems to have gone into a very relaxed and easy place. Is this a coma or just a very deep sleep? I swab her mouth with a moistened sponge swab every 2 hours and give her cheek a kiss. I keep soft music playing. She is oblivious as far as I can tell. Lungs still breathing so rapidly and shallow.
Monday. Sept 10th.
2 am. I gave morphine for the first time. Even though she seems comfortable I just wanted to see if she might show signs of being more comfortable with it. I can see no difference. She sleeps, eyes nearly closed, lungs pumping quickly and quietly. I hate that death is disfiguring mom. Her right foot is turning purple from lack of circulation and there are signs of skin breakdown on her back, elbows and heels in spite of the air mattress. I want her to leave before her body falls apart, while it is still intact. I guess the bird does not leave the egg without destroying it. I can’t believe today won’t be mom’s last day.
Later – she died, passed away, left – at 8:30 am. I had just checked on her around 8:25 and decided to go outside for a walk - went to my room to put on shoes and a jacket. When I stopped by on my way outside to check again on her I could see right away she was gone. Her skin so white, ashen. It is afternoon now and her body is still here. We are waiting for the kids to get home from school. They will be the last of the family to say goodbye to the body. Jill came too and said goodbye - very sad.
Now I am getting used to calling the body “it” sometimes. It is here cause I didn’t want to be rushed like we were with dad’s body. That was horrible. I feel good being able to sit with the body. I can touch her hand and kiss her temple, talk to her in private. I’m gradually absorbing the fact that she is gone - my mindset is changing. Still, so still – there is nothing so still as death. The clock ticks and the alternating air mattress pad still inflates regularly (I can’t stand for her to lay on a hard bed yet). Doris, the VNA nurse came and washed mom’s body, did some of the preliminary work of arranging things with the funeral home and removed the narcotics. I sit with mom’s body in her room when I’m not out in the kitchen with others. I have no fear of death or a dead body. It was all good – as good as it could be. There is a joyous release when I see her body and know she is gone from it. But then waves of sadness come too.
Life goes on – it has to. I will finally have freedom to do things with the grandkids, with friends, with Dave and by myself – whatever I want (!) without the worry and pull of having to be home by a certain time hanging over me. I will be able to work uninterrupted for hours now. It will be amazing.
Tuesday. Sept 11th.
Woke up around 4:30 and couldn’t fall back to sleep – though really, I went to bed very early last night – around 10. I woke up cause I was worried about Yoshi in the cold house. I guess I just always have to worry about taking care of someone! I got up and turned on the furnace. I would have liked to have had a dream about mom last night – who knows – maybe I did – but I forgot it. And now here I am typing up my paper journal writings from the last few days to share on LJ…
Last night Jules and his boys and Dave and I all went out to eat at the Chinese buffet. It was wonderful to have a relaxed meal together and not worry about getting home by a certain time or if mom was ok. She is ok now. Safe in the hands of something greater than me.
I am on the edge of the precipice standing with you, you will jump and I will not, at some point a crumpled body will fall and I will see your spirit fly away, out over this long valley heading to your real home. Away from this valley and this house that you have called home for 60 years now. I feel sick right now, soul sick, so sick that I am almost physically ill. I feel like I am dying with you. Weak and ready to collapse. It’s like there is a giant boulder rolling down a hill – your death is that moving mass, unstoppable. Moving faster or slower but always going down. I could try to stand in it’s way but I am like a fly, of no weight in these matters. My mind is so dull anymore, can’t even think. I am just a waiting thing in a limbo. Will there be life after death, your death, for me? I hope so, though I can barely imagine it. How will it transition? I can see myself in one year’s time, maybe, but how about in one week’s time? No. It’s hard to accept having such a dull and empty mind – a part of me that is in denial says I *should* be doing better, be more creative, active, interested in things. Dave agrees that it is different now – it’s just waiting and waiting. It feels so empty.
Don’t know what to eat – can’t imagine preparing any food, no matter how simple. I’ve been living on coffee and granola bars when I am at home. I tell Dave I’m hungry but don’t know what to eat, as I am reaching for a granola bar this morning. He says fry an egg – I can’t even do that. I ask, will you take care of me? (with a crack in my voice) – can I really ask someone to take care of me, the one who is supposed to take care of everyone else? He does! He makes us a breakfast of sautéed onions, eggs and tomatoes with toast. So delicious – and not a granola bar!
Goat shed time. Incense. Drawing. When I person draws they can’t think of anything else – it is like a meditation.
drawing of a sea serpent sculpture that chloe made - it sits down by my shed
Eventually I must think again though. I think about going back to the house, calling hospice to tell them that mom’s BGL was 296 this morning, which is less than the 340 it was yesterday but still high. I think about typing this up on the laptop and putting it on LJ. What picture (s) would be good with it? I think about trying to explain what mom’s condition is like now. She lays and breathes, sometimes quietly and slowly, sometimes with a ragged sound and faster. Her eyes are slit, looking down, not really looking at anything. Sometimes the slit is wider and you can see her eyes are looking up, staring at nothing. He lips move weakly – is she trying to speak? Or just preparing to swallow? I know she is in there – this isn’t a coma – though I don’t doubt we will have that later. I just think her mind is so, so far away now most of the time that it can’t reach her gestures or her face and body. Her hands are perfectly still all the time, her arms and legs floppy like a rag doll’s. Her head too. But she breathes and it seems to me like there might be a smile when I first come in the room to say hello over her bed and give her forehead a kiss. A smile before I start to do the work of taking care of her, rolling her from side to side, checking her underpads, exercising her arms and legs, washing her, trying to give her sips of liquid. She looks blank when all that is going on. I’m glad she is not in pain, not distressed at all. I hope it continues this way…
on the road
This morning I was able to get out to walk with Berdella and on the way driving over to her house I felt such exhilaration - like I was seeing the world freshly after a long, long time. This job of caregiving someone at the end sucks you into the house, into the tiny world of feeding someone, propping them from side to side on pillows on schedule, checking all the details, is the catheter hose still straight each time after you move the person, are the heel protectors in place, have you marked down how many ounces of fluid went in and came out, focusing on their mouth and throat to see if they have swallowed yet, is it safe to roll the bed down now, are they awake enough to take another sip? Being responsible for someone else's existence is like looking through a magnifying glass all the time. And then you can't see the big picture anymore. The morning colors looked so fabulously bright this morning, the sun slanting across and hitting flowers and trees and grass. Usually when I drive over I do notice things that look nice and I enjoy the drive but I don't feel compelled to stop the car and take photos. This morning I did. It is ironic though that I had already made up my mind to stick with taking black and white pinhole photos in spite of all the beautiful colors. ( Anyway - here are the rest of the photos I took this morning. )
In the woods Berdella and I came across this magical leaf dancing on a spider web and I took a short video:
That is Berdella's voice giving it the name of Leaf Ballet.
Actually it's foggy every morning right now.
This is the last day of the kid's summer vacation. In so many ways it will be good that they go back to school - it will be quiet again in the morning - after I get them onto the school bus. Johnny left for college this morning with Dave. Mom is sleeping a lot. When I wake her to drink the little bit that she does drink then she barely opens her eyes - just a slit and there are no more smiles or signs of recognition. I really hope Jill can come today - I worried a lot during the night that she might not. I need her help since Dave won't be here all day. I kept trying to calm myself and get back to sleep with thoughts that I need to trust that we will be taken care of here - god will see that help comes somehow. Or that I will be able to make do without the help. Stupid worry.
Edit - Jill just called and she's not coming. So now I go to my second hope - I'll make do just fine without her. And I probably will.
Mom seems better - happier (smiled at me this morning) and for the first time since she broke her hip and collar bone 6 weeks ago I have lifted her without using the stupid gait belt and the sling on her left arm, lifted her the way we used to with both her arms up around my neck and my arms under her arms. SO MUCH EASIER!! I can see she has lost a lot of weight in the last few weeks - she is light as a feather. I still think we are in the home stretch here - she is leaving (because her appetite is so slight), but I think things will be better for her since we can lift her easily again and she can sit in her wheelchair some of the time now. Maybe we can go out to the kitchen in the evenings again and I can get caught up on all the TV shows the DVR has been recording! I was thinking about how all this seems to go - like a roller coaster - up and down and my hopes go up and down. When she is doing well I'm happy and hopeful (but at the same time I feel the future weighing on me - when will this be finally over? I am so tired of it!) and when it looks bad like the end is near then I start to cheer her on in my mind to "get out of here", but it is all so very sad too, I will miss her smile and looking into her eyes so much, even though the smiles are rare it makes all this worthwhile. You just can't win.
Mom isn’t doing well – well, she hasn’t been doing well for a while but she is doing worse. Has a yeast infection that just won’t quit, and now another kind of infection or something that makes her temp go up and she is very lethargic – drinks very little now and eats nothing. She was throwing up on Monday and so miserable – the nausea seems to be over for now – but the lack of thirst and lack of appetite remains. I feel like we are coming down to the home stretch. But the doctor ordered more meds for the yeast infection and Cipro for the unknown infection – we will see if that helps – it might – mom has amazing abilities to bounce back. She never bounces back to where she started of course but she does many times bounce back “to life”.
I dreamed last night that we were having a big family party at an old farmhouse that had a basement. You climbed down the wooden basement stairs to a big room, all painted gray and empty of furniture. Many of us were gathered there. It was like the upstairs was the entrance but the “real” party was in the basement. We were there to mill around and quietly talk. Someone was smoking pot in a handmade pipe and offered me some – I took a toke, something I don’t normally do anymore (in waking life). You could come down to the basement from upstairs by the indoor stairs but for some reason you couldn’t go back up that way. You had to go out by way of an outer door. For such a plain basement it was a very fancy door, with etched glass side windows on each side and a set of white painted stairs to climb up to ground level. The light was bright outside and it looked very inviting out there. End of dream.
It seems so hard to concentrate on the normal places my mind likes to go. I have been dallying with searching for a pair of walking shoes that won’t hurt my feet. That is something I actually need so it makes sense to do my addictive amazon shopping and searching for them. I don’t like to buy shoes without trying them on and I do locally look for shoes but I never find any that will work. So I’m halfheartedly looking online for bunion friendly shoes when I have free time.
last week i finished decorating the new goatshed journal with a collaged cover and painted and collaged pages
scan of a drawing i did years ago while going through a depression and now collaged into the goatshed journal - it showed up yesterday
Excerpt from my goatshed journal yesterday:
Good afternoon my little shed - I haven’t seen you for a few days – mom has been so ill I can’t get away. I yearn for the end and dread the end so much. That is why Shiva appeals to me right now – god of destruction and renewal. Praying that there will be something after “the end”. There has to be an end before there can be a beginning. Every end holds a beginning just as every beginning holds an end.
I have totally lost interest in gardening this summer – have too much to do with mom anymore – gardening has fallen by the wayside. I have decided, even more than ever, that I don’t want to garden and keep plants – too much work. I want to be free, to travel someday, to work on my art and jewelry. I can see gardening with native plants (placing them in the yard in attractive ways) but that is enough. No more potted plants or houseplants either. This could be a mood I’m going through – the real test would be to see what happens in the spring when nature awakes will I still not want to plant things then? I will need to exercise restraint at that time of year more than any other.
Watching 28 Up right now – it is comforting somehow to see that people don’t change (that much). It is OK that we don’t change – that I don’t change. We aren’t meant to change really. We are what we are, and that’s OK – all different and true to our natures.
It is so hard to forgive myself for not being more - for not having energy, for letting the garden go (it looks terrible and could look better with just a little work but I don't have the interest in it right now), for not being "happy". I imagine others are thinking the same thing about me. I logically know they aren't but it's hard not to project. Sorry...
Listening to the sound track from the “Leonard Cohen, I’m Your Man” film – different artists doing covers of Leonard Cohen songs. I love Leonard’s voice but am enjoying this too.
gas light poke berries getting purple
Oh my gosh - Sunday is such a long day around here. A day that I spend nearly all day with mom in her room with barely any breaks. I get so tired that when I do finally put her down for a nap I have to sleep too - then it's time to wake up and back to the same thing. Thank goodness I can bring the laptop in here - and read books, and listen to music - OK - I guess it's not so bad when I think of it that way.
i've stopped the car many times to take a photo of this scene before but I think this is the best yet, with the fog and sun this morning
Jill came today - that was good. I am weak in that with too many days here at home, in the house with mom all day, I get depressed - hopeless - where is the joy? Walked with Berdella this morning and I have plans to walk with the grandboys early tomorrow morning at 2 Mile Run again. Right now that is one of the biggest joys of my life - walking in the woods. I went shopping this afternoon and bought a big backpack - big enough to carry clothes for a few days, food, and places to strap on a sleeping bag and pad and even a tent. I'm still *Walking The Appalachian Trail* In My Mind and getting these supplies makes me feel like I'm bringing it closer to reality.
Berdella gave me 2 zucchinis this morning and I am presently simmering some zucchini soup. It smells so good: cubed zucchini, fresh tomatoes, onions and basil, salt and pepper and a little butter - one of my favorite foods (and simple! It complies with my cooking prerequisite of using only one pot to make it).
12 hours later
Jill came, I went to oa this morning, spent time with Dave later and had a good nap this afternoon. Dave made roasted portobella mushrooms and German potato salad for dinner. Life anymore seems very rollercoasterish - lots of ups and downs and hard to hang on - and I need to admit I am not in control. I don't feel very centered (within myself) but I am grateful for the outside things that help me to feel centered again.
The weather is so changed now - the windows are all open and cool fresh air is circulating nicely. I saw people wearing jackets today even.
not exactly accurate - i took off my glasses so there wouldn't be reflections
Still playing with the pixlr-o-matic but now I see you can do it right online - I'm going to take it off my iPod to free up space again. And it's easier online cause it's bigger to see what you are doing.
Got up really early this morning. Dave left in the night to take Johnny to Edinboro to meet up with his brothers who are all going to Canada fishing. His brother Bobby will be taking Johnny with him. Dave won't be going this year though - I thank him for that. It was hard last week when he took Sebby to Paleontologist Camp and I was alone most the time trying to figure how to turn mom and lift mom alone (though I'm the one who insisted he should go). I'm glad he decided to not go to Canada this week.
Most the lilies out front were beaten down by the rain we had - all droopy and laying on the ground. In past years I tied them back with strings - I might do it again - should do it now before they get too dirty.