Leafing

Grace

2008-02-08T23:37:00.000-05:00

Reflections

2007-12-12T03:11:00.000-05:00

The Christmas season is here.

It turns out, grieving hits in waves. Because it's a happy time of year for most people, it doesn't feel right to post frequently about Mom and Dad at my other blog. I'm already depressing the hell out of people with the few posts already there about these past months.

Dad has been gone for 9 1/2 months. Mom has been gone for 6 months. That sounds like a long time. It feels like a short time.

A couple of times I've read back on this blog. There are things I understand now which I didn't while everything was happening. Assuming someone might find this blog and be looking for help dealing with similar situations, I want to do some updating.

1. Mom's inability to walk/balance. Some of that was the drugs. But in retrospect, it was really due to her body shutting down, and the cancer. Cancer releases toxins which travel through the bloodstream and affect brain function. I now believe it was the cancer mostly which caused the walking and balancing problems.

2. Edema. Edema makes the body or parts of the body very swollen. It's a buildup of fluid in the tissues. When edema shows up, there isn't much time left. I could be wrong but I've seen it in 3 different people now and all died shortly after edema started to appear. Edema is a sign that the heart is not pumping as effectively. That's why the fluid builds up. The body is starting to cease functioning. We found that massaging the limbs helped work the fluid out of the tissue. Mom's feet and lower legs were swollen for a couple of days when she last came home from hospital. Massaging helped get rid of the edema entirely, which was lucky.

3. Suffering. For the type of cancer Mom had, and having read several other people's experiences who went through the same thing, Mom was unique. She did not suffer as much as most people. She actually had a fairly peaceful ending.

4. Heart murmurs. We all worried about the strength of Mom's heart due to her very strong heart murmur. It turns out, the heart murmur didn't cause any problems whatsoever. In fact, her heart was the last thing to stop finally. It just would not let go.

5. Signs of the end. The typical physical signs were largely absent. No discoloration of the hands or feet. Looking back, the greatest signs were the brain effects, the increasing inability to eat and drink, and the reminiscing. When Mom started talking about her Mom, who had died 30 years earlier, it was a sign the end was near. I heard stories I have never heard in my life. Mom would then end each story with "I haven't thought of that in years" or "I don't know what made me think of that". I read somewhere that when they start talking about deceased loved ones a lot, that means the end is near. I believe that wholeheartedly now.

6. If you reach your birthday, you live another year! So many times that has not been true. It wasn't true in Mom's case, Dad's or my sister's case.

7. Signs of the afterlife. Flickering lights that never used to flicker, buzzing lights which have no connection problem, doorbells going off on their own even with the batteries taken out, the sound of footsteps, their scent suddenly appearing in one spot, songs at the right time, songs at the wrong time, snow on your birthday when you haven't had snow on your birthday for years, pets staring at a spot of nothing for stretches of time, imagined or real voices when nobody is there except you, catching something out of the corner of your eye, mysterious help in situations where no help was available, people saying things to you which only your deceased loved one would say (particularly strangers saying things), dreams where you would swear they are alive even when you wake up.

If not for Hospice, I would have had a stint in hospital myself sometime in the past 6 months. Because I was Mom's caregiver, I am allowed to use their services for free for 13 months following Mom's death. That means I have about 6 months left. If not for them and their alternative health practitioners, my health would probably have me at the brink of death today. Massage, reflexology, reiki, integrated energy therapy - these are treatments which have helped my body try to recover. I'm still recovering but my health situation is bearable. That said, the symptoms of my disorder are still out of control. I'm not on the verge of an emergency visit though, which I have been on the verge of many times since Mom died. So that's improvement.

Since Mom died, I went into a firestorm of activity trying to get things done which she wanted me to do before she died. Things she'd been on me about or wanted done for her own reasons. This house has been serviced and some things upgraded. I've seen the dentist 3 or 4 times and my doctor several times. My doctor even made me have a physical exam, which I wasn't happy about, but didn't want to have a heart attack so I agreed. Everything Mom wanted done has been done nearly except for one last thing, which is just late arriving. And after all this, I felt no relief. She wasn't here to care. I heard her in my head, telling me those last things and "not to leave it too late" and rushed to get it all done before winter. It makes no difference. She's not coming back. But I am glad to have things done.

I wish that I had hugged her more. Respecting Mom and Dad both and not wanting to insult them by treating them like children, I followed their lead. Their lead was never emotional really. I remember sitting beside Mom on her bed and putting my arm around her. She actually rested her head on my shoulder. We sat like that for a while. We did that a few times. But mostly, she didn't want me fussing over her like that. The most I got away with was petting her head, because it was shaved. She confessed it felt soothing so I did it a fair bit. I wish I had hugged her more.

They know when the end is near. They detach, in conversation, by staring off behind the person in front of them. They don't worry near the end. It's all calm for them mostly until one last jarring episode takes them into unconciousness until the final end. It happened that way with both Mom and Dad. My sister too.

Dad knew what the weather was going to be like when he died. He asked me if it was snowing the last time I saw him. He was looking out the window while we sat together. I looked, saw it wasn't snowing, and told him so. He said, "hmmmmm". Dad had a few episodes throughout his life, where he looked over the land somewhere and saw how it was a hundred years or so before. Freaky. He only admitted to it twice, which is how we knew about it. The night he died, it was a snowstorm. He was unconcious by then but he must have seen it. He was childlike in behaviour the last time I saw him, just two days before he passed. Childlike in the sense that he had not a care in the world and seemed at peace, and happy. Dad was a worrier so I should have known something was up. He wanted a hug and a kiss. He told me he loved me.

Dad's cousin, who is 1 year younger than Dad, calls to check on me from his home in Ottawa, Ontario. He sounds exactly like Dad. He offered to be here for me as a father figure if I ever need anything. It's both hard and comforting to talk with him. They were so much alike. It's like having Dad here, but not. I am glad he's in my life though, Dad's cousin.

Grieving cycles. I'll be fairly okay for a month, then days of crying. Not crying 24/7, just several times a day, or all evening off and on. Anything can trigger it. I forced myself to get a Christmas tree for the cats. I've been crying ever since. Hospice explained it this way:-

All the first holidays, anniversaries, any eventful date, in the first year following loss, can trigger the tears and upset. You are not going crazy. Let it out and don't hold it in. Because there was so much happening at the same time last year, I couldn't process it emotionally at the time. I had to deal in facts, keep up with coordinating care for both of them and communicating with doctors and handling meds and making life and death decisions. Since they've died, particularly since I'm in the same time period now that everything started last year, it's only now that my body can process the emotion of it all.

And that's exactly what's been happening. December 15, 2007, for me, will feel like December 15, 2006. Whatever I couldn't process on that date last year, I'm going to feel this year. Every date has been like that and some days of no major significance. Everything from October 7th has been a growing sadness and ever increasing puddles of tears. I'm riding it out. I hate it. It hurts. You feel like you're going crazy sometimes. Thankfully, I know I'm not. But this..... this is painful. It's a good thing I live alone, and that I'm sick and not working, because honestly, I'm an emotional mess right now.

This too shall pass.

See Echomouse from now on

2007-07-26T22:33:00.000-05:00

I'm half posting here and over at Echomouse. It's ridiculous to have two blogs now. I'll leave this one to stay but I'll only be posting at Echomouse from now on. No point writing the same things in two places.

Just wanted to let you know.

Tuesday, July 24th

2007-07-24T08:33:00.001-05:00

Trying to keep illness at bay. Sporadically posting at Echomouse, linked in the sidebar. Reading Lynne's blog. Trying to feel better physically. Emotionally better but still not able to think clearly very much.

This grieving thing .... I only wish it wasn't so hard. Reflecting on Mom and how she felt after my sister died, I'm reminded of what I did to help her. Having someone get you out or just to talk to you makes a world of difference. But that's for the moment. When I get home or finish a phone conversation, it's back to me and the cats. Because I lived with Mom these past few years, we got a lot closer. That makes losing her harder I think, because she lived here with me. Everywhere I look I see Mom's hand in the gardens, in the things we have in this house. Every time I think about something that needs to be done, I still think of Mom, as if I have to discuss it with her. My brain knows she's gone but my heart just won't let go it seems.

Grief is hard to bear, for anyone. The 'process' is different for everyone. I'm just finding it exhausting. I booked reflexology and massage at Hospice but that doesn't start for a couple of weeks. I went to a friend's birthday bash on Saturday and wanted to be somewhere else. It was so hard to work up the energy to even attend. But it was good to go, to be there for our family friend.

I miss Mom. The cats miss Mom. I still feel like this - "where the hell did everybody go?"

Rest in Peace Lynne

2007-07-16T11:14:00.000-05:00

When I started this blog, almost immediately, Lynne found it. She also had gallbladder cancer. Lynne and Mom seemed to be experiencing the very same things at the same time.

Lynne was such a comfort to me. Mom knew about her and I read Lynne's blog to Mom. They both kept up with each other through me. Yet they never met or spoke. They asked about each other and kept up with how each was doing. Mom worried about Lynne, Lynne worried about Mom, and me. I began to think of us as the worrying trio until Lynne showed me how peaceful and calm she was able to be with all of this. And then I noticed Mom was also peaceful and calm. The only person freaking out was me most of the time. I have a lot to learn from Mom and Lynne, even now. For years I will be reflecting on the two of them and Dad too. They all amazed me as they fought to enjoy life while living their last months, weeks and days.

Now they're in heaven together. I have mixed feelings about Lynne's passing. The same way I did with Mom and Dad. It's a relief to know they're not suffering anymore. But the loss is so great, losing a loved one..... even knowing they don't suffer anymore is not enough sometimes.

My condolences to Lynne's partner Patty and their children. Please stop in at Lynne's blog. She truly was an inspiring woman and had an especially wonderful soul.

Rest in Peace Lynne.
Give Mom and Dad a hug for me.

1 Month

2007-07-13T06:54:00.000-05:00

This week has been very hard. In the midst of it, I spoke with dear friends who made it bearable. But then the silence returns.

Everyday, or most days, I write a list of things to do and try my best to get them done. I'm still behind. The days seem so long. Everything I did on Wednesday, seems like it was a week ago. The days feel so very long. Time is not clear for some reason.

Now I have a sinus infection which I hope does not turn into a cold. That's how that virus starts, the one my brothers and so many people caught this summer. Little brother is doing better though I still can't talk with him. Not being able to communicate with him makes all of this harder to bear. But at the same time, if I did, it would drag things on for him and make his life worse, so it's better than I can't and don't.

Eating has not been on my lists but I force myself when I remember. Today I'm determined to be better. I am going to see an old friend tomorrow and don't want to be a mess. Also seeing little brothers 1 and 2 and don't want to be a mess for them either. I'm thinking a lot about how Mom was, she held most everything inside, which wasn't easy on her or good for her, but it did make things easier on us. This makes me so sad, that she did that. Still, I do see how it made things bearable for us. So I'm trying, finally, to learn that from her. Sometimes, to keep things inside is better for those around me. Everyone is in such a precarious state it seems, or maybe I'm projecting that onto them due to my own state, but I worry about making things harder so best to be quiet as much as possible. So that's what I've been doing for the most part.

All those photos of Mom at my Flickr space have been developed, with duplicate sets for siblings and some enlarged copies. Almost 500 photo prints and it only cost a little over $100.00 at BestBuy. So there's a shopping/bargain tip for anyone. They do a good job and the prints look great, except for my lack of photography skills, which no developer could fix. Today, I have many videos I made of Mom to burn to DVD for siblings. Must not forget to do that.

3 weeks

2007-07-05T06:46:00.000-05:00

On Tuesday, it was three weeks since Mom died. It was not an especially bad day for me. I tried to be normal, do normal things though I didn't do very much. But yesterday....yesterday was long.

Little brother has pneumonia. There's a very bad virus going around, which starts with a cold, and for many people then progresses to pneumonia. My older brother had it just before Mom passed. Then my little brother started to get sick within days of Mom's death. He can't even talk on the phone. Doctor's orders are strict bedrest for the next two weeks. I feel so disconnected from him. I'm very worried about him. His hubby, little brother #2, had his first car accident yesterday. The best news is that he was not hurt. But Mom's car, which is theirs now, that is in the shop as a result of the accident. It was LB 2's first ever car accident. Those two...I'm worried about them. They're handling everything fine they say. I let them know I'm here for them and can be on the road at a moment's notice if needed. They have lots of friends nearby but still, for me, I need to know I can do something if they need help.

Everyone misses Mom. I thought I was handling it well but now realize I'm not. It's hard, this grieving thing. An email arrive from the nurse who was with Mom and I during that last night. She is such a special sort of person ... a very good soul. Like a bright light and fresh air all at once. We're keeping in touch. I'm going to hospice today because I do realize I need some connection to others who are grieving losses. I hope it helps. My cats are doing better, though very glued to my side a lot. The little one, Morgan, has stopped vomiting. And last night, I think we had the best sleep we've had in weeks. I woke up with his furry body flung across my chest and neck. Poor thing, I hated to wake him.

Yesterday, the dietician from the cancer clinic called to see how Mom was doing and how I was doing. Due to a glitch, somehow the computer system was not updated to show Mom had died. And nobody told the poor man. I had to tell him over the phone and felt terrible about that.

There is another blogger who has the same cancer Mom had. Her name is Lynne. Her blog is a happier place than this one. Lynne is vacationing with her partner Patty and their kids. Please stop in to see them. She and Patty are wonderful souls and I know they would appreciate your kind support.

Grieving....but....cure for my disorder?

2007-06-28T17:43:00.000-05:00

Made myself go to Home Depot today. Had a list. Only managed to buy a new tarp and stain for the gates. Got sidetracked talking with a woman whose daughter has Type 1 Diabetes. It bothers me that they now call it Type 1. Not that it's wrong to call it that. But in my history, it was always called Juvenile Diabetes, so it's just a change to my history and a minor one at that. The disease of Diabetes is no less dangerous, life-threatening or scary due to the classification name changes. Anyway, cried when I pulled into the parking lot. Oh yes, that's still going on. I saw sheds assembled in their parking lot. Last time I was there, I photographed all the sheds so Mom could see them, so we could decide together which one, if any, to get. Never did buy the shed as things worsened right after that for Mom.

Took a pill this afternoon to stop my racing heart. Fell asleep, but woke hearing Mom's voice saying "Oh I'm so sorry, I didn't know you were sleeping"....I thought she was at front door. I lifted off the sofa so fast. But it was just a dream. So many times she found me sleeping somewhere, wherever I passed out during the day, and she said that to me. I never cared when she woke me. It's not like I can't sleep anytime or all the time. The trick is staying awake and functioning. Spent two hours trying to read some leaflets about grieving from the Hospice place. What to do? Can't read anything worth reading, can't watch tv, so let's check email.

For several years, I have subscribed to Google Alerts for any articles featuring "mast cell" because that is the basis of my disorder. Today, I received the article below in my inbox. I simply am in shock. I so hope this is true and that the research turns into something solid. Finally, someone did the right research and wouldn't you know, it's nobody anyone in the world at the forefront of this disorder has heard of....at least, not that I've heard. Way to go Jerusalem!

"NEWSTRACK SCIENCE
Published: June 28, 2007 at 12:14 PM

New allergy therapy is developed
JERUSALEM, June 28 (UPI) -- Israeli scientists have developed a technique for eliminating such allergies as the common cold and asthma.
Hebrew University of Jerusalem doctoral candidate Ido Bachelet has created a technique he said might become medicine's first line of allergy therapy.
The technique focuses on mast cells -- the cells that help trigger allergic reactions. Bachelet identified a mast cell receptor protein -- CD300a -- that has a prominent negative effect on mast cell activity, virtually shutting down the cell. But CD300a is widely found throughout the immune system and simply targeting it might result in undesired, overall immune suppression.
To overcome that problem, Bachelet and colleague Ariel Munitz designed a small, synthetic antibody fragment that can recognize two targets simultaneously -- the receptor CD300a and a mast cell-specific marker. Thus, the antibody targets CD300a only on the surface of mast cells, avoiding suppression of other immune cells.
When mice suffering from severe chronic asthma received the antibody in nose drops, they reverted to normal, healthy mice in less than two months.
The technique is being licensed by the university to pharmaceutical companies for development and eventual clinical trials."

Bunnies have meaning

2007-06-27T11:39:00.000-05:00

Well, this is rather cool. According to my therapist, bunnies symbolize facing our fears. When they appear, it's usually a sign of encouragement from them. This news is courtesy my wonderful trauma therapist.

I was so anxious about getting out in that garden. Worried about pulling something I shouldn't, something Mom had planted that was a real flower and not a weed. Worried about killing something. That bunny arrived twice! And the second time, he nearly hopped onto my toes.

My therapist asked me when I first saw the bunny. Turns out I had blogged it so I was able to look it up. It was last July, late in the month. Right before everything started going to hell. She said the timing of the bunny appearances were incredible and wonderful.

Works for me. I'm going to put some carrots in front of their hole. And lettuce. But not *in* the hole, as that might scare them and would be an invasion of their space. I know, I sound ridiculous. But really, thinking about it, if someone opened one of our doors and threw food inside, it would scare the crap out of me. So, outside the hole it is.

2 weeks today

2007-06-26T07:39:00.000-05:00

This is like a breakup ... or something. When you think of the person everyday, even though they're not in your everyday life anymore. Wondering to yourself "God, when will there be a day that I *don't* think about them?" But I don't want to not think of Mom. It's better for my heart to pretend she's here and just outside or upstairs or off doing something. Hopefully, it won't stop but it will get easier to bear.

It's not the thinking or remembering that hurts, it's the loss. I can't believe it's been two weeks. It feels like yesterday almost.

The cats are doing better but my little one, Morgan, is still vomiting occasionally, though it's not very much. And it's probably because he's eating the dry food. His tummy can't take a lot of that food. I was in too much pain yesterday to get to the store for the special food for him. I'm doing that today. I hope he likes it. He liked the Sensitivity food for a couple of days and then he wasn't having any of that anymore. It's important not to switch flavours a lot, according to my vet. I knew not to flip brands but didn't know about different flavours. Tuna is always safer than anything else and easier on their tummies. So today, I will buy the Wellness brand and see which flavour he likes and then stock up and hope it helps. He's not going into Mom's room anymore or hiding out in the guest room. It's tough cheering him up when I'm not that cheery myself at all times but I'm trying. I recognize our routine now. It was like this many years ago and now, we've fallen back into it just as if it was yesterday.

For my siblings and nephews and nieces, I uploaded every digital photo of Mom which I haven't developed yet. Made a special set on Flickr just of Mom over the past several years. It's been really good to look through them because those are Mom. Not the way she was at the end. So many great pictures of her. And so very many of her having cuddle time with my wee cat Morgan. No wonder he misses her so much.

Tomorrow is the 7 year anniversary of my sister's death. It never ends it seems. I'll be taking fresh flowers out to the cemetery for her and also for Mom and Dad.

I cannot wait for the month of June to end.

Gardening and Bunnies

2007-06-25T07:39:00.000-05:00

We have bunnies in our neighbourhood. Lots of them apparently, though I've only ever seen the little one. I LOVE the bunnies. My neighbours do too. Notice I said "my".

I've been making a conscious effort to stop saying "our" or "we". This weekend I realized I was still talking about home as if Mom was here. And she is here, in spirit; this house is a reflection of her mostly though our tastes are nearly identical. Anyway, I didn't want to switch to "me" and "mine", but speaking as if Mom was still here....everytime I said the words, my heart fell. It hurts. So I had to stop. When some time passes, I can go back to "our" and "we", because this is and will always be Mom's house - Grandma's house - but for right now, I am trying to climb out of this grief and every little bit helps.

Saturday was a bust. The mind was willing but my body wasn't having any of it so I did nothing outside. The gardens needed weed pulling, flowers needed deadheading and pruning. I knew to leave the leaves that are green, even after the flower has bloomed and finished, because the leaves feed the plant bulb (so I've been told). But the dead leaves, from tulips etc., those were everywhere and looked terrible.

Sunday, I was up really early. The cats used to let me sleep in, because Mom would feed them. Once she got sick, they still let me sleep in because they just picked up the vibe in the house I guess. They waited. But now, they're back to sleeping with me - both of them - and waking me at 5 or 6 or 7 a.m. for food. So I got up and made coffee and decided to get outside and water the lawn. Then I started some minor weeding on the patio stones. Then I put the sprinkler on the back lawn and attacked the front gardens. I filled a big clear bag with gardening waste. Me. I did it. I can't believe it. Just kept pulling and whatever let go easily went into the bag. The thistles were dug out. I even pruned this beautiful tree thing that got huge in recent weeks. I'm pretty sure I didn't pull anything real...anything Mom planted that was meant to stay. Those plants are important to keep. So it looks better in front.

As I was working in the front, the bunny crossed behind me and ran to the fence and crawled under to go into the backyard. He was so fast and so cute. Then later, I was standing in the middle of the garden and he hopped on over. For a second I thought he was going to come right up to me. Filled with anticipation, I said hello and watched him casually move to a hole under our front step. I'd been planning to put a rock in front of that and thank GOD I didn't! The bunnies are living under there!! I'm beyond happy and thrilled about this. Love the bunnies.

And I'm beginning to like this gardening thing. Mind you, I had shade to work in and it wasn't hot outside yet. But I only managed 2 hours of work and that wiped me out. I was sick the rest of the day but it was worth it. The backyard weeding will have to be done bits at a time. The heat and sunshine makes me itch, my throat starts to close, it's not good. But I can do little bits.

I'm going to start reading Mom's gardening books. So many we bought for her, I'm well armed at least. Whether my brain will retain any of it is the question. But I'm going to try. As for the bunnies, as long as they don't hurt the foundation of the house, they can live there forever. I told the neighbour I'd found their home and she was all excited too. Love the bunnies. My sister had a thing for bunnies. I wonder if there's any connection?

Day by Day

2007-06-22T23:03:00.000-05:00

I took my youngest cat, Morgan, to the vet this morning. He'd been vomiting again, only once a day but still, that's not good. She thinks he is suffering an very upset tummy due to all the stress. Cannot believe I didn't think of that. So he's eating "Sensitive" cat food from the vet (seriously...it's called Sensitive) made by Waltham's and he's getting 5 mg of Pepcid AC twice daily. He gobbled the food throughout the day so it must be making a difference. And no vomiting today. He's sleeping a lot, definitely on edge, and not his usual playful self. But I'm giving him lots of cuddles and attention. Teddy, for the first time in months, took a nap with me this evening. I fell asleep cuddling Morgan and woke up with big Teddy next to me. These two have been through so much. I wish they could talk.

Morgan misses Mom and her bed. I gave the bed frame to a family friend and donated the mattress and boxspring to Goodwill. It was a huge bed and had been my sister's prior to her death. I don't like it so I gave it away. Too many memories anyway. But Morgan, he loved that bed, and remembers Mom in it too. I often find him laying in the middle of the carpet in Mom's bedroom. Now though, he's taken to sleeping on the guest room bed. It's nicer in that room than in mine. My room has all the stuff I needed to store quickly to make room for stretchers and stuff from Dad's place. My room is the last room of the house requiring a new paintjob and an overhaul in general. I guess I better get on that.

It's taken me all week to do paperwork and make phone calls for Mom's estate. All the cards she carried in her wallet had air or reward miles of some sort. I cancelled all the cards and donated all the points to the Canadian Cancer Society or Diabetes Association. I wanted to send some thank you cards to people and while there weren't a lot, it was incredibly emotionally draining. But it was necessary and important.

I'm so tired even when I think I'm not. I am upright and seem okay for a couple of hours and then, massive headache, exhaustion and jelly legs kicks in. Despite being so tired, sleep is hard to manage. Clonazepam is my friend. I'm not taking it unless I really really need it, but that's everyday.

I rented 5 movies from Blockbuster today. I have all week to watch them. Thank goodness for that because I can't seem to stay awake long enough sit through one movie to the end. It's going to take a week to see them all. TV is no help. Everytime I get out the tv guide, I immediately see the shows I would mark for Mom. I can't watch anything on tv. I don't really know why but expect this is normal.

I was talking to someone about this, about losing Mom, and Dad, and I said this is the first person that I've lost that I really cared about losing. I mean, I cared about the others, but didn't miss them as much. They didn't impact my life. Dad and Mom are tied together for me though Mom is more sorrowful. Mom was younger, no sign of illness until winter, just too soon and so wrong.

This time last year we were looking for gardening things to do for Mom because she had all the major stuff done. She was bummed about it. So we bought more plants, things that would return each year (perennials?) because I have no idea what I'm doing with plants and gardens. They're all blooming beautifully.

This house is so quiet. I am so tired. I want to make a couple of road trips but if this fatigue thing doesn't correct itself or ease up at least, I don't have any hope of doing that. Then again, leaving Morgan and Teddy just now is not a good idea. We lived together alone,the three of us, for years. But somehow, Mom made our house a home and they really miss that. I do too.

If Morgan makes it through the weekend without vomiting, then we know he just has tummy upset. I'm to call the vet on Monday to let her know. Then I'll buy nothing but that Sensitive food for him.

I'm going to try to do some weeding this weekend. Garden waste pickup happens this week so I need to get the worst of it done if I can. I can always drive it to the dump myself, like I used to do for Mom, but given my energy level, I'm really not up for that. Weeds are even sprouting through some patio stones we have out back. Weeds have never sprouted there before! At least, I never saw them. Maybe Mom always pulled them in their infancy. I don't know. At least there's still some turf builder in a bag in the shed. I couldn't find any and want it for the cemetery. She never told me, or else I didn't pay attention, to what the stuff was called or where to get it. Our neighbours mentioned it, that Mom told them, so I was going to have to ask them what the stuff was, but I found the bag today.

Ugh. Feel crappy. Time for bed.

Strange Coincidences

2007-06-20T09:16:00.001-05:00

Early this morning, I heard my neighbour outside talking to someone. He sounded rather close. I peeked outside and he was hard at work removing a dead cedar in our front yard. The poor cedar just died about a month before Mom passed. Mom hated it anyway. We have such great neighbours. He was out there with his grandson and even pulled the roots out and everything.

So I moved my truck to give him more room to work. As I was walking back across the street, his wife was chatting with their neighbour on the other side of their house. She waved me over and introduced me to the woman. I nearly started to cry. This woman, who I have taken a photo of while she snowblowed her driveway, who I knew they mentioned by name a few times but I had never seen her before, that neighbour is the Charge Nurse who took care of Dad when the shit hit the fan during an emergency trip to the hospital with Dad. I wrote about it here, back in January. This woman lives two doors down and I could kiss her toes! She remembered me, no surprise, but as she said, when she'd see me she didn't have her glasses on and didn't recognize me. My neighbours were amazed, as I was. The Charge Nurse agreed with me and said "that nurse is her own worst enemy" LOL Apparently I'm not the first to complain about her.

Yesterday, more strange coincidence. I called the woman at the community care office, who arranged all the homecare for Mom. She coordinated everything and worked her butt off for us though we have never met her face to face. Her surname is the same as Mom's best friend's surname up north, which was odd in itself.

Anyway, she said she heard I gave a beautiful eulogy for Mom at her funeral. I said she must have heard from the nurse who attended. She said oh no, her husband was at Mom's funeral. That was weird. I didn't remember seeing anyone I hadn't met. She then told me, "oh my husband is your older brother's boss". Holy crap! This woman has known my older brother for years. They live in the next town and her husband commutes (!!) to Toronto for work - it's 2 hours everyday each way. God that's an awful drive. So they used to live where we did just north of Toronto. I wondered why older brother's boss was at Mom's funeral. He lived close and brought a co-worker too. When he went home, his wife asked where he'd been since he was home early. He said he was at Mom's funeral. She said her jaw nearly hit the floor. She couldn't tell him the coincidence due to confidentiality but I told her to go ahead, it was too strange and too wonderful all at once. So we had a nice chat. I found out my brother's boss thinks the world of him, so I let my brother know. He was freaked by the coincidence too.

What a very strange small world it is. I'm almost expecting a nice surprise everyday at this point. Wonder what will happen tomorrow.

Home - Michael Buble

2007-06-18T05:49:00.000-05:00

One of Mom's favourite artists and mine. This song "Home" in particular.
I've been playing Michael Buble's music a lot this weekend. But this song, and another called Everything, they make me think of me and Mom and our family.

P.S. Happy Birthday Corb.

Symbiosis or Synchronicity?

2007-06-16T11:33:00.000-05:00

Today is Saturday, June 16, 2007. Seven years ago today, my now deceased sister called me at work to tell me her name had finally come up on the waiting list for heart surgery. Let me backtrack a bit more.

Sometime in 1998, my sister and I had a blowout fight. I can't recall what it was about but it was huge. We ended with my pointing out to her that she seemed to have no awareness of what it did to us, to me, watching her suffer with diabetes for my entire life. She never thought of those around her when she ignored her diet, ignored her illness, didn't take care of herself. The years in hospitals, the constant fear of her death or suffering. It hit home. She told me to get out and I gladly left. We didn't speak for two years. It turned out, those were the last two years of her life. Mom was living with her though. Gradually, Mom and I drifted apart. She came for tea, checked on me every week, still cared about me. But when Mom came to my place, we never seemed to talk about much anymore. I couldn't understand why she even bothered. She seemed angry at me or burdened with something. Despite trying to understand it all, I wasn't to learn what was happening in their lives until June 10, 2000.

That day in June seven years ago was a Saturday. I was working all the time. That day, I had just packed up my briefcase and was loaded down with stuff. I planned to go into the office and work all day to catch up some things. It was easier when everyone was home for the weekend and the phones weren't ringing. It was raining that day and overcast. A perfect day to bury myself in work. But before I could leave my apartment, my phone rang. It was my older brother calling me from his home a few hours north. He was desperate, worried, really upset. He said something was wrong at my sister's place, Mom didn't sound good, my sister sounded worse, and I had to get over there. I explained I didn't really talk to them, which he knew, and that I wasn't sure. He told me basically to get my ass over there and then call him back.

I called Mom. She wouldn't tell me anything. She sounded terrible. I tried to find out what was wrong. I said I was coming over. And that's when she said "NO! You can't. you'll kill your sister" I laughed, but Mom was serious. None of it made sense. I told Mom to call me if she needed me. Then I phoned my older brother to tell him "Mom won't let me in. She thinks I'm going to kill Corby". He told me again to forget that and just go. This whole thing was so upsetting and weird. I didn't know what the hell was happening. I barely hung up from him, when my phone rang again. It was Mom. She said my sister wanted me to come over but I was not to upset her. I promised I wouldn't and asked what was going on? Mom said just come over.

When I got there, I learned my sister was in congestive heart failure and waiting for surgery. They kept pushing her date back. Mom looked frail, hyper-attentive to my sister, guarding her, watching my every move and words, and utterly exhausted. My sister started to cry, telling me she'd missed me. I said "well, stop being so ornery and we'll have an easier time getting along" and then I laughed. I'd seen my sister come back from the brink of death so many times my whole life, I fully expected this would all work out fine. In the meantime, I started helping Mom and my sister. I was there everyday. I did shopping and bought her a new VCR so she could see Stuart Little (her VCR was broken). She needed diversions while she waited to hear of a new date for her surgery. I spent the following two weeks cheering her up, encouraging her, and trying to be supportive of Mom. I was more worried about Mom than my sister though.

Two weeks later, my sister was gone. She had the surgery, but there were complications due to her diabetes and another illness she had, plus an infection. It was never going to work. She died June 27, 2000, five days after she went into hospital. Mom was a shell of herself. So weak, exhausted, frail and just fried. I looked after Mom after that, running between her apartment and mine.

So this started June 10, 2000.

On June 10, 2007, Mom was conscious for the last time really at 2 a.m. She cried out for me, saying it hurt everywhere but she couldn't explain it. After that she just slept deeply and we had to keep increasing her pain medication. Seven years.... to the day; the day I was called to Mom and my sister's home.

I've been taken care of by Mom (and Dad somewhat) for the past seven years. I've also taken care of them. The past two years, Dad's health gradually worsened, but we never could find out what was happening. Shortly before he died, we learned he had that rare slow growing bone marrow cancer. He'd probably had it for a few years. That's what had been wrong the past two years.

Not much longer than three months later, Mom died. Mom and Dad had been informally separated for about 17 years. Still, they spoke everyday, sometimes several times a day. They went out together nearly everyday, to the park, or for coffee or lunch. Mom took care of Dad at his apartment, ironing his clothes, changing his bedding, cleaning, until she couldn't do it anymore which happened last summer. She was too tired and didn't know why.

It's been seven years of illness, worry and death. When I was thinking on the timing of events today, it was one more weird thing. That's not the strangest though you'd think that would be enough.

About a month or so ago, I remembered a dream I had 18 years ago. I was at older brother's house visiting. Mom and Dad were there too. I was in college full-time and working nearly full-time so I was pretty worn out that weekend. I took a nap in his guest room and had a terrifying nightmare. It was so real that I woke hyperventilating and crying and shaking. It seemed real, even when I woke up, as if it had happened already. I walked out of the room and saw Mom and Dad sitting there. I was a mess. All three of them told me it was just a dream, I was too stressed out and stress can do that. It meant nothing. Here's the dream....

I dreamt that Mom and Dad both died of cancer within months of each other. I was devastated.

I didn't remind Mom about that dream when I remembered it a while ago. I wanted her to somehow last longer. I didn't want it to be true. I didn't want to scare her or give her reason to let go. I really thought Mom would be here for the whole summer at least. We had just been planning to go buy flowers for the pot on the deck. But Mom, she never made it; she fell days afterward and just got worse from there.

That was the last prophetic dream I had. I have had others during my lifetime and they all came true. I don't have any other dreams or foreknowledge to worry about. For the first time in my life, I have absolutely no idea where I'm going or how I'm going to get anywhere or what I will be. It's okay though. Freeing actually. But I miss Mom.

Mom's funeral was yesterday. It was perfect. Small, intimate, outside, exactly as she would have wanted. Her favourite prayers, favourite hymn, and I spoke, which I wasn't planning to do but something happened and I realized I needed to speak for Mom.

The triple plot I picked out seven years ago is now holding all three of them. There was no visitation, but I saw Mom by myself at the funeral home. She had the most incredible smile on her face. I've never ever seen her smile like that. The funeral home said they don't position faces and I know that's true, because I've seen their work a couple of times already. They said it's just the way the person's face falls. Beautiful. Mom is at peace. I know that for sure. And she's so happy. Driving home after seeing her there, I cried and nearly cheered "Go Mom!! You did it! I'm so glad you're happy and so at peace."

The casket I picked for her was maple wood, because she chose a maple tree for our front yard, which my older brother bought and planted for her. The stain colour of the casket matched her bedroom furniture. The casket was called "The Dominion". I picked it because of the maple, the stain, the wood.... but the name clinched it for me. Mom always shopped at Dominion grocery store when we were growing up. Also, Canada used to be known as the Dominion of whatever. But the day after I saw Mom in that casket, I remembered something else. Mom grew up, from birth to her first years of marriage with Dad, and her family home with Grandma and Grandpa was on ..... Dominion Street.

Sometimes at night I turn on the light in her bedroom and stand there. Or I sit in the wingback chair. On Thursday night, the night before her funeral, the light flickered and buzzed. It's never done that before. I thanked Mom for coming but asked her to stop that because it was scaring me. It stopped. By Friday morning, I thought it was probably my imagination. I was looking too hard for signs or something. So I went into her room and turned on the light. I stood there for at least five minutes. The light didn't flicker or make any sound.

The night before Mom passed, the front light outside burnt out. Little brother #2 replaced it for me. The nurse who came at 11 pm on Monday night, to do the night shift with Mom so I could sleep, arrived with 3 white peonie flowers from her garden. They had some pink in the center. Pink peonies are Mom's favourite. We had a pink peonie from our garden in a glass beside Mom's bed. She loved it. The nurse told me she had never ever brought flowers for a client before but something compelled her. She picked them from her own garden in the dark. Three peonies. Mom, Dad, my sister?

Today is Saturday, June 16, 2007. One week ago, I spent the morning waiting for Mom to wake up. She never did. Just slept and slept and slept. At 1 pm I finally accepted that her cry at 2 a.m. was the last I would heard from her. She would sleep now until the end. Still, I couldn't remove all the various drinks we had at her bedside until Monday. I had hope still. Something could happen. There have been miracles in this family and I just didn't want to give up yet.

Two weeks ago, we were alone here, little brother and I, doing 12 hour shifts watching and helping Mom. This morning...I didn't know what to do with myself. I've lived alone for years before. Mom and I only lived together since January 1, 2002. Somehow, I fell back on what I used to do when I was healthy, not working around the clock, back when Morgan was a baby still and my life was calm and peaceful. I haven't remembered what it was like, never thought about it, couldn't recall the feeling these recent years if I tried. But this morning, I just fell into it somehow.

I went to the grocery store early for cat food and orange juice. I barely made it out of there before I started to cry. So many days I've spent there, getting the special things for Mom, scouring the aisles trying to think of what to try ... puddings...fruitcups...juices.... Glucerna ...medications off the counter. I cried all the way home.

I bought newspapers, made coffee, kept the tv off. Morgan fell right into line with me and jumped up on the dining room table, smack in the middle of my newspaper. We talked, cuddled, played. It's just the three of us again, me, Morgan and Teddy. It's weird. Sad. Calm. Too quiet.
Morgan spent the past three days vomiting. He's better today. He misses Grandma too though.

I don't want anymore signs of things to come. I don't want any dreams of bad news or happy news or anything prophetic. Whatever this all meant, all these years, my whole life....I have a feeling it's done now. Maybe I'll never know until I die what it was all about. But I hope from now on that the rest of my life is normal, just like everyone else's. Hopefully that's not too much to ask.

(edited to fix years since my dream. It happened 18 years ago in June. My sister's birthday is June 18. She would have been 53 this year. I made one mistake in Mom's obituary. I wrote that she and Dad were married 52 years. They were actually married for 53 years when Dad passed. This September would have been 54 years.)

Mom 1936-2007

2007-06-12T22:06:00.000-05:00

The nurse woke me around 3 a.m. early this morning. Mom had begun to let go. I was able to be at her side and comfort her, tell her it was alright to leave, put my hand on her chest and hands. And then I let go. She had opened her eyes and was focused on something off to her right, as if someone was standing in the doorway of her bedroom. She didn't seem to know I was there or the nurse.

Mom died at 3:17 a.m. on Tuesday, June 12, 2007. There will be a graveside service on Friday at 2 pm. No visitation, as Mom didn't want that and that whole process was very hard on our family the last time we had to do that. We swore, never again. I am exhausted and not up to all of that anyway.

I splurged on her casket. The perfect choice in line with her wishes. They told me later today that the casket I chose is the same one used for the Tomb of the Unknown Soldier in Ottawa. That's very fitting, as Mom's older brother served in World War II.

I hope that Grandma came for Mom. Corby was probably there, but I have this feeling, it was her mother. She's talked so much about her these past months.

If you know me outside this blog and have my phone number, please do not call. I am extremely exhausted and need to sleep. I am talked out. Tired of reporting and talking to nurses and doctors and friends and loved ones. There are no more words. Mom said to me last week or so that I have been running and caring for her and Dad for 8 months now non-stop. I hadn't realized. Today I am starting to feel it. I'm not complaining, but please know, I am so tired it will take me time to be up for communicating and blogging and anything beyond self-care.

On Friday, I have arranged to be able to stay behind to watch them lower Mom's casket into her grave and bury her. I cannot leave her until that is done. It's important to me.

More to come on this and little things that happened. But that won't be for a while. We've lost our Father and Mother this year. Mom hurts the most. God how I wish she were still here, but healthy and not suffering.

Sunday night

2007-06-10T22:21:00.000-05:00

Mom has been declining slowly. She has not been conscious really since early Saturday morning, around 2 a.m.

We've dealt with my sister and she did respect Mom's wishes in the end and come to see her without the grandchildren. Mom was adamant she did not want the kids to see her like this. It was difficult getting this concept around my sister's brain but I managed it. She came (with her husband) unexpectedly on Thursday to see Mom. Stayed too long, wore Mom out, but it's done. Mom was glad to see her at last.

Mom's friend was also here on Thursday. This friend is working my last nerve. She has a morbid need to know every little detail. Quite frankly, I'm not comfortable discussing the details about Mom with her because apparently, she tells everyone she knows. I've never known anyone in my life who, when told their dear friend was dying, asked the family such invasive, private and morbid questions. I shut her down rather quickly. I don't plan to have her back since Mom is now mostly unresponsive. This is family time now.

I've been concerned about the process of the body shutting down, in terms of being able to care for Mom as things progress and to do the right thing to keep her ultra comfortable. Lots of info was provided by the nurses, who have all been excellent. It's just been difficult to find the nurses who are available. Tonight we have a new nurse but she seems very conscientious and detailed. She's reading the book on Mom's condition and I'm about to head to bed.

Anyway, I found an excellent resource called the Signs of Dying. It's very helpful and I appreciate the spiritual component. Click Signs of Dying to read if you or someone you know would be helped by this information.

Late Wednesday Night

2007-06-06T22:26:00.000-05:00

Thank you for the support and kindness. I have barely had minutes to spare for updating this blog. When I have had minutes, my mind wasn't in a place to update, but I'm now waiting on my drugs to work before bed so here's a quick update.

Mom is confined to bed now. She asked for a bedpan the other day so we got that right away. I also bought some sheepskin (fake but just as good and washable so that's even better) and a pad for under her body. The pad makes moving her easier on the bed.

Some chest pain intermittently, some leg pain, very dry skin. No food intake really since last friday. Pain medication is Dilaudid (Hydromorphone). The syringes are filled by the nurse each morning. Today she filled 10. I've used 5 since 7 a.m. That's a record for Mom. She's not really on anything else though she has other drugs. But it seems only the pain is problem that can be treated with drugs right now. Anything else is nature taking it's course. She has been confused and tonight, some hallucination.

I have been going on 2-3 hours sleep each 24 hour period since last Friday. Finally, last night a nurse arrived at 11pm and stayed until 7 a.m. The weekend and Monday and Tuesday were spent fielding massive phone calls from all the support agencies scrambling to find nurses and help here so that I can get some sleep. We have personal support workers and nurses for overnight. Every night is now covered until Monday. Then the scrambling starts again. The problem seems to be that there is a shortage of nurses working in the community through the government funded care organizations. They don't get paid enough and prefer to work at the hospitals. That's what I was told anyway. When this is over, I am so on the ass of the government. I've already got a list of things we struggled with for Dad. Adding Mom's difficulties with care into everything could make a small book. That may be an exaggeration but it's how I feel about everything.

Mom has 3 ports, which are just needles with an attachment end on the tube for screwing in syringes of medicine. I've become good at delivering the meds. That really worried me but it's okay so far. We're waiting on the IV nurse to hook up an IV for the nausea meds but Mom hasn't needed it anyway.

They had to put in a catheter but really, that was good because it was very difficult and painful for Mom to lift her or even use the bedpan. And it was frequent, which was very hard on her.

We talked about what she wants to buried in, which clothes etc. She sleeps most of the time so we haven't been able to talk about her casket choice. But I recall vaguely she wanted wood I think. I'll see how she is tomorrow to ask her. It's morbid, I know, but Mom wants full say when she can so we're doing this with her input as much as possible. It gives her some control and makes things more bearable for her. Although she is tired of this and definitely not happy that she's dying. She said she's not afraid. Somehow I don't think she's telling me the truth, but rather being the brave Mom.

The absent sister threw a wrench into things and it upset little brother. I warned him but at least now he realizes there is no reasoning with her. I'll see how that situation turns out later this week. Older brother stopped in today on his way through town for business. He and his wife were really feeling guilty that they couldn't be here but honestly, there was no good to come of that so why disrupt their lives? He had half an hour with Mom and she was lucid. Then when he left she immediately asked for pain meds. She'd been putting on a brave front. I knew it but didn't say so. It is difficult knowing she's holding back how she's really doing, because we're her kids. So the nurses and support aides are a godsend, because she tells them the truth. Then they tell me.

Little brother returns this weekend. We'll have overnight help so we can both sleep at night, except if I have to get up to give Mom meds. Support aides cannot administer the drugs but the nurses can. It just depends who we get on which nights. But that's okay. Being up for a few minutes is better than all night.

I think that's everything for now. I'll try to reply to comments and check in on bloggers this weekend. Once I've had some sleep consistently, my brain will be better able to handle that. Thank you to all of you for being here.

Public Service Note:- If you or anyone you know ever has a gallbladder attack, or discovers they have gallstones, even if they are not bothering or painful, get the gallbladder taken out. Years later, it always turns into cancer otherwise. This is not a smokers cancer, from everything I've read and researched. This is gallstones. And so far, no Oncologist has found anything to beat it, although one or two have been successful at extending some lives. But still, not by much and not without much fighting for life happening.

Saturday night

2007-06-02T21:41:00.000-05:00

The time is 10:40 pm. I'm on watch for Mom, in her bedroom, with this laptop she made me buy.
I sit here, mostly in the dark, while Mom sleeps. She tends to wake every couple of hours during the night. Confusion is present, which makes it tough for her to find words to say what she wants to say. When the confusion is really bad, she has difficulty making her legs work and things like that. It's very reminiscent of Dad and helping anyone who has dementia. Except Mom does not have dementia. She has a liver and gallbladder full of cancer, which releases toxins into her bloodstream. The toxins are strong enough to cross the blood-brain barrier, so they interfere with her ability to communicate and just make her body work.

Mom was in hospital from Monday to Friday. I really wanted them to keep her until this coming Monday, as a discharge on a Friday is not the best in terms of having time to prepare the home. But she desperately wanted to come home to die and so....we've made it happen.

Mom has always been independent and stubborn and strong willed but smart too. She definitely knows herself and her capabilities. But now, with cancer, she has been surprised more than a few times with the limitations she has. For instance, she did not want a hospital bed at home. But within hours of being at home, she realized we need it. A call this morning brought an electronic bed to our home within hours. Her enormous bed is now dismantled and in the rec room. The rec room has become the storage place for Dad's things and now some of Mom's too.
We also had to arrange a commode for Mom. Walking is not easy and a traditional toilet sits too low. With the muscle and weight loss, she needed something closer to bed and easier.

Mom has an infection or something somewhere. She's taking antibiotics to keep it under control and stop the recurring fever. But swallowing pills is becoming increasingly difficult. The pain and symptom management team needs to get that kit thing going here. It sounds like they put a needle into her, the same way they would to hook up an IV. Then I can deliver medications in liquid form by injecting them from a syringe.

She just woke up and was unable to take her pills. Her fever is back but she cannot get the antibiotic down either. She is confused, will not meet my eyes and just said hello to her recently deceased cat. A few days ago, she told me she could have sworn she felt him walking across her on her bed at home. I'm not surprised but it bothers me. As does everything about this process. I know we're doing this for Mom, and this is the way she wanted it, but its' very hard, stressful and scary.

Little brother has been here since Friday and will be staying until Tuesday. We've gifted Mom's car to him and his hubby, since they need a car with working A/C and Mom's is in immaculate condition. Mom is not taking the Tarceva anymore because it had no effect. The CT scan showed the cancer has spread into her abdomen. The oncologist told me that Mom has weeks. Mom's religious friend told me this...."in my experience, when they say months they mean weeks and when they say weeks they mean days". Yeah, this 'friend' is highly irritating. Something is off about that woman. But Mom is oblivious and all she knows is that it's her good friend and that's the most important thing. As for eating, that doesn't happen anymore. Mom last had cereal for breakfast at the hospital on Friday. Since she pushed everyday to get home, the hospital really hussled to get clearance and consult and homecare going for everything Mom might need. It was still too soon. Last night was hell. But regardless, as soon as he told Mom she could go home to die, Mom's body started showing signs of shutting down. The fever, infection, edema. Most things taste sweet, too sweet, to Mom. She is only drinking water and coke now. I'll try the Gatorade tomorrow.

Little brother and I have been taking shifts. One of us sits with Mom at all times. I bought a baby monitor but when she's really confused, she doesn't speak or make any noise. So if we're not in the room, it's not good. I stay up all night with her and little brother then covers the day. We're only heading into the second day but we're already too tired and overwhelmed. I'm arranging more nursing care, specifically in the form of an overnight nurse. We already have reinstated the daily nurse visits and the personal support care.

I'm worried about what will happen when little brother goes home on Tuesday. I hope to have some night help in here, if not a nurse, a personal support worker who is strong and can help with manouvering Mom without hurting her. I'm just not able to do it well.

Now, I sit here and Mom has gone back to sleep after we got her back into bed. Last night, I panicked when the fever hit. Today, tonight I mean, I realize....she's dying....if she can't take the meds, she can't. She's letting go and I have to let it happen. Her DNR orders lurk with every decision. I'll be glad for daylight again. The nights are too long and worrisome. I know I can't save her. I just don't want her to suffer. Since she can't take the pills, and tomorrow is Sunday, it's going to be a long day and night. Hoping she's better in the morning.

A fracture

2007-05-30T23:40:00.000-05:00

It turns out that x-rays showed Mom has fractured her clavicle. I don't know yet if it's a full break or just a crack. Tomorrow I'll find out details.

Today they did a CT scan on her head and also the repeat CT scan on her liver and stomach area. We are due at the cancer clinic on June 5th for the next follow-up, but since Mom is in hospital now, and that date is just next week, I asked if they could do whatever they needed while she's there. So they are.

The oncologist has asked for an assessment of home conditions to see if Mom has enough support at home and if we need anything else. She does but we do need more help. Some appartus things and probably more nursing care. Mom is desperate to get home. But she's in a lot of pain, very weak, and they're still sorting out the meds balancing. We've cut out the Nabilone (Cesamet) entirely as they feel that was causing the unsteady gait. Still trying to get the vomiting under control so I requested more meds for that.

Mom is confused a fair bit. She's herself but not. She's not sure what day it is and cannot remember time accurately. Also, she has trouble describing her symptoms on the pain number scale. Everything is a 1 or 2 according to her, but the truth is, things like appetite are a 10 (worst appetite) and pain is an 8 at least due to the fracture. She sleeps a lot which is probably good. But she normally lays on her left arm and shoulder, since the liver extends down the right side of the body. Laying on her right side is uncomfortable so she rarely did that. With the fracture, she has to lay on her back and that gets sore after a while as well. Her tailbone mostly or lower back. This is normal, I've heard, with the type of cancer she has.

I keep running into hospital staff from the days Dad was in there. Today it was the social worker who helped us get him into nursing home care. I didn't even see her until she spoke to me. Another thing, and this is very strange, are the names of Mom's nurses and other staff. While in emergency on Monday, the nurse looking after her had my name. She was working on another patient with a different nurse and the name of that nurse was the name of my very first best friend, who I just recently reconnected with. When Mom was admitted finally and put onto the Oncology floor, her nurse on the floor had my first and middle name. She has that nurse every night. On Wednesday, two physiotherapists showed up to assess Mom's mobility and condition, so they could advise the Oncologist whether or not Mom could go home when she's stable. Their names? My name and my sister's name.... the sister who is living but not speaking to any of us. It didn't register with Mom as she was out of it a bit but I can't help wondering...what the hell is up with this?!

I'll get the CT results on Mom later today hopefully. I spend most of my time at the hospital with her, except for the afternoon when I go home to sleep a bit. And now, I really have to try to get some more sleep. My body pain has lessened finally. It's still there but not as bad as it was. My brain is functioning with the help of notes. Apart from screwing up the laundry (I put the soap in the fabric softener dispenser), and putting the sugar dish in the fridge, and taking the home phone with me in my truck, I'm managing okay. As long as I can function in terms of caring for Mom, that's what matters. I admit though, things are muddled a bit in my head.

They said yesterday that Mom should be able to go home Friday. But with the fracture news and the vomiting, severe dehydration and meds still being sorted, I think it probably won't be until early next week. I just want to get the meds straightened out. She doesn't need to walk. We can get more help in here at home. She's definitely coming home, I promised her and we're sticking to that. It just may take a few days longer to get her settled enough. And then, the dreaded ambulance will have to bring her home. She's going to hate that but it's the only way.

Mom in hospital

2007-05-29T04:54:00.000-05:00

Yesterday morning at 5 a.m., Mom fell sideways into the bathtub. She hurt her shoulder pretty badly but nothing is broken. Still, that along with other problems prompted the home nurse to get her into hospital. We were in emergency for 7 hours. Prior to that, I'd been up with her and consulting the nurse all morning since Mom fell. I was going on 3 hours sleep. It's difficult to sleep, for me, because I stay up late to listen for Mom. Sometimes she needs help off and on until midnight or 1 a.m. so I tend to try to stay up as long as I can manage. This is because, when my fatigue hits, once I fall asleep, I don't hear anything. So I worry I won't hear her if she needs me.

I finally got in just before 10 pm last night. A run home and back to the hospital to get her settled and checked in with things she needed was required. Calls to the nursing and homecare agencies also required. The home nurse who has been with us from day one on everything is very worried about Mom. I am too.

Not sure what's going on but more complications are happening for Mom. It's painful seeing what she's going through and not being able to do anything to help her. I'm not big on religion but I do believe in God. Must have spent an hour praying off and on last night, for help with Mom, to not let or make her suffer, to get this sorted and her back home soon.

When I ran back to the hospital last night to bring things for Mom, a nurse stopped me on the main floor in the elevator bay. "Hey woman, what are you doing back here?!!!" I have no idea what her name is but recognized her face. She was one of the many who helped care for Dad when he was in there for 6 weeks this past winter. I quickly filled her in. I find it incredible that all these nurses and helpers at the hospital remember me and Mom and Dad after all these months. Wish I knew their names. They deserve enormous thanks for all they did for Dad and our family last winter.

I hope Mom comes home in a few days. But right now, she can't walk by herself (she'll tumble or lose balance), and has other problems happening now so they need to sort this out. We've done everything we can here at home but figuring out these complications requires hospital care.

Again, the house is too quiet. I woke at 5 a.m. this morning. Weird. Same time as yesterday morning, when I heard her cry out when she fell.

Too many similarities to Dad just now. Too much pain and worry. I'll update when I know more.

Everyday is sleepy day

2007-05-27T15:14:00.000-05:00

Mom is sleeping a lot these days. The entire past week anyway. Today, I gave up trying to coax her to get out of bed for breakfast. I just let her sleep until noon, which is what she's been doing all week. The doctor who came to our home said it was okay and really, at this point, if Mom wants to sleep, it's best to let her do that.

She was awake yesterday for a good while. I've finally found a Gatorade flavour she likes - Orange. That's important for her to drink as it helps with calories, sodium and potassium replacement. All the vomiting and diarrhea depleted these things, as well as magnesium, so Gatorade is a huge help. She drank a lot of that yesterday and seemed really alert. Then today, again with the sleepiness. We just go with it.

The doctor prescribed a new drug call Domperidone. We both said "Dom Perignon?" thinking...cool! Champagne for cancer...who'da thunk it? The doctor laughed and said everyone thinks that but no, this is actually a pill. Mom takes two of them, four times per day. I stopped the Gravol today. She still takes Ondansetron and Cesamet (Nabilone). The Tarceva is still going too. The imbalance and shaking has returned a bit and we're pretty sure the Gravol is the culprit. This is due to the lengthy process of trying other things to rule out the cause. It's gotta be the Gravol. So I'm hoping the Domperidone keeps the vomiting at bay and helps Mom's appetite.

This new drug helps with the full feeling, which makes it difficult for Mom to eat. It will also help anything Mom takes in to move through her system. It will also help with the itching. Mom's been taking Domperidone for two days now and it seems to be working. Although today is the first day without any Gravol whatsoever. Keeping my fingers crossed that we do fine without the Gravol.

As for me, I've got the added heat to deal with, which comes with this time of year. Fatigue, bone and muscle pain, vision problems, foggy thinking, all have been raging and knocking me flat. So we've had a week of both of us taking it easy and no new complications for Mom. Some much needed rest, thank goodness. I hope I get better from here although it seems to be cycling - one good day, three bad days, and back again.

In funny news, my very chubby kitty named Teddy (pictured below with Morgan) seems to think that everyone who comes to see Mom is actually here to give him love and attention. He has the nurses, doctor, hospice volunteers and personal support worker totally snowed. Unfortunately, Teddy is going to the vet this week to begin a stint in their Pound Patrol program. It's like Weight Watchers for Cats. I know I don't need another thing to do right now, but every single person who comes to our home remarks on Teddy's weight. One of the nurses thinks he's ill possibly, or else, limping due to all the weight he carries. I can't take it anymore. I feel like a terrible parent, so he needs to start that diet program ASAP.

Heh. This is going to be fun!

Morgan (left), Teddy (right)
Enjoying bird sounds and sunny morning air this week
before the humidity hit and I had to close everything up and crank the A/C

Update

2007-05-23T06:38:00.000-05:00

We've had a bit of a rough time the past week. The cycling of symptoms threw a wrench into things for Mom. Vomiting and the Big D. Mom spent the weekend depressed and angry but not talking. She slept a lot and most days has not gotten up until noon. Yesterday she was much better and this morning, even better still. We've got the symptoms under control except for the itching. She was awake all night itching she said. So I gave her one of my antihistamines again. I give her Aerius, 5 mg. It works for me. Since in both our illnesses, our livers are the culprit mostly, I figured if it was safe for me it was safe for her. It does help her so that's good.

Today will be better. I could tell already this morning she's in a better frame of mind. The home doctor comes on Thursday for the first time. That will be helpful, to see her finally.

Mom thinks the Tarceva is working because, despite these symptoms, she's felt the best over the past week than she has in a long time. I hope it's working too. It certainly seems to be anyway.

So, that's it. We got swamped a bit and I had my hands full caring for her and myself. I believe I've hit menopause (yay...sort of) which, since that's so hormonal, has kicked up my own symptoms. We were both pretty sick all weekend. Today we're both better finally.

I'll get back into blogging later this week hopefully.

Different Perspectives

2007-05-17T11:20:00.000-05:00

We're trying to get Mom's vomiting under control. Little bits of success followed by back to the same problem.

Mom told the home nurse today that she's felt the best the past two weeks than she has since diagnosis. I was shocked. I corrected her. She disagrees with me. Here's the issue - in the last two weeks, Mom has been the worst ever. She has been in pain at least once every day. She hasn't been able to eat barely at all except for maybe one or two days out of these past eleven days. Her blood pressure today is 86/52 and she is severely dehydrated because even fluids are difficult to keep down. We're working on this so nobody panic. Anyway, I have that infernal diary filled with details of how Mom has been throughout these days. So which is right - my notes or her memory?

I finally asked Mom, while the nurse was here today, did she mean emotionally? She said inside, she's felt the best as far as she's concerned over the past two weeks. I'm dumbfounded. But if Mom feels fine, that's good I guess. I don't get it but that's not her problem.

Maybe this has something to do with peace of mind. But just last night she told me she was so angry about it all. It's hard to make sense of this.

Medical teams need facts and details, so when they ask Mom how she's doing, she gives her glowing report. Then when she's done, I cut in and read them my notes. As long as they have both versions, they're well prepared to care for Mom and to instruct me on what to do. That's the best we can do.

In other news, the man who invented the laser , Theodore Maiman, died of my illness the other day. He was quite old. But still. The man who invented the tool which helped my sister and mother keep their vision (most of it at least) suffered from my disorder. Why don't these famous people with this disorder ever talk about it? It frustrates me to the nth degree. No wonder the medical world knows next to nothing about it. Nobody will do the work to raise the money or research it. RIP Mr. Maiman.

Thank You All

2007-05-14T23:36:00.000-05:00

I just wanted to post my very sincere appreciation and thanks for those who comment here. It's tough to go back and respond to prior days because each new day brings a new development lately. Plus, my time and energy is pretty much sapped just now.

My thanks to all of you. I do appreciate your support and encouragement.