Sorry, I can't blog about mom anymore. I am trying to get over the sadness and it doesn't help anymore. I really miss my mom. I had them take the blog off our station website.
Anyway,I am just writing this to the 16 people or so that have been following me.
Thanks for everything. My writing and your responses really did help.
Emily
PS - My email is emmycatmoore@gmail.com if anyone needs to reach me.
Monday, August 10, 2009
Sunday, July 5, 2009
Saturday, July 4, 2009
Lying in Wait
Mom is still here... in body at least. She has spent the last five days or so in a semi-comatose state.
She was completely unresponsive for about 28 hours. She could not be awakened. Then, she briefly woke up, albeit mentally still in another world. One time she was talking to her deceased mother. Another time she was quietly mumbling about jury duty. I think they would give her a pass. Other than that she sleeps, and she hasn't mumbled anything in more than day.
Since she is a 'do not resuscitate', there is no feeding tube, no ventilator, and she started refusing her oxygen about two weeks ago when she was still mentally here.
I drop her pain meds in her mouth every few hours, put on her Chapstick, and keep her mouth moist with a sponge. That's it.
I have made peace with her dying. I don't want to sound harsh, but now I am looking forward to her passing. If you were here you would understand.
Mom... Brenda... is really no longer with us. This is not life, this is not death. It is limbo. It is time to pick one or the other, and the former is no longer an option.
She doesn't seem to be in pain. I don't think she can really sense much of anything now.
It's time to go.
Thank you to everyone who has contacted me about your personal experiences with the death of a loved one. Your support has truly helped.
I debated about posting the latest photo of her, but since mom has allowed me to take photos of her and post them in this blog during her journey, I truly believe she would give me verbal permission to post this one as well... if she could. Why? Because this is what cancer can look like, and this is part of her journey.
However, I wanted you to see what mom normally looked like during her life, so I posted a photo of her in nursing school in her 20s, and one taken late last year after her surgery to remove the colon tumor.
Such a beautiful woman.
(2nd photo credit: Henry Barrios for San Joaquin Community Hospital)
She was completely unresponsive for about 28 hours. She could not be awakened. Then, she briefly woke up, albeit mentally still in another world. One time she was talking to her deceased mother. Another time she was quietly mumbling about jury duty. I think they would give her a pass. Other than that she sleeps, and she hasn't mumbled anything in more than day.
Since she is a 'do not resuscitate', there is no feeding tube, no ventilator, and she started refusing her oxygen about two weeks ago when she was still mentally here.
I drop her pain meds in her mouth every few hours, put on her Chapstick, and keep her mouth moist with a sponge. That's it.
I have made peace with her dying. I don't want to sound harsh, but now I am looking forward to her passing. If you were here you would understand.
Mom... Brenda... is really no longer with us. This is not life, this is not death. It is limbo. It is time to pick one or the other, and the former is no longer an option.
She doesn't seem to be in pain. I don't think she can really sense much of anything now.
It's time to go.
Thank you to everyone who has contacted me about your personal experiences with the death of a loved one. Your support has truly helped.
I debated about posting the latest photo of her, but since mom has allowed me to take photos of her and post them in this blog during her journey, I truly believe she would give me verbal permission to post this one as well... if she could. Why? Because this is what cancer can look like, and this is part of her journey.
However, I wanted you to see what mom normally looked like during her life, so I posted a photo of her in nursing school in her 20s, and one taken late last year after her surgery to remove the colon tumor.
Such a beautiful woman.
(2nd photo credit: Henry Barrios for San Joaquin Community Hospital)
Monday, June 29, 2009
Ready
My brother Adam is coming out from Washington, D.C. today. This means she will have seen all of her children shortly before she dies.
The Hospice nurse visited today. Mom is hallucinating, sometimes anxious, but mostly near comatose.
I told the nurse outside that I was ready for mom to go. This is no life for her. She is suffering. She said I needed to tell mom this because she thinks mom may be hanging on out of worry for me.
So I did.
A few minutes ago I pulled up a chair next to her and said I needed to tell her something.
"I'm OK with you dying," I said. "I'll be fine."
I told her not to hang on for my sake, and I know the time is soon.
"I know," she said, still holding my hand.
I tried to fight back the tears, because I don't want her to see me sad. I didn't do such a great job - but I maintained.
"This isn't living," she said.
"I know," I said. "But, I will see you again someday."
I kissed her cheek and told her I loved her.
She said she loved me too... and she is ready.
The Hospice nurse visited today. Mom is hallucinating, sometimes anxious, but mostly near comatose.
I told the nurse outside that I was ready for mom to go. This is no life for her. She is suffering. She said I needed to tell mom this because she thinks mom may be hanging on out of worry for me.
So I did.
A few minutes ago I pulled up a chair next to her and said I needed to tell her something.
"I'm OK with you dying," I said. "I'll be fine."
I told her not to hang on for my sake, and I know the time is soon.
"I know," she said, still holding my hand.
I tried to fight back the tears, because I don't want her to see me sad. I didn't do such a great job - but I maintained.
"This isn't living," she said.
"I know," I said. "But, I will see you again someday."
I kissed her cheek and told her I loved her.
She said she loved me too... and she is ready.
Tuesday, June 23, 2009
I Don't Even Know What To Call This One
I last blogged last Tuesday - Wednesday mom crashed. Bad. In 24 hours she went from walking on her walker, to wheelchair bound, to bedridden.
Thursday morning I called the nurse, family and close friends to say I thought the end was within days. She was pale and clammy, had shallow breaths, was not eating, could barely talk and did not have the strength to even sit up.
She was fading, I was a mess. She could not swallow pills and I had to put drops of her pain medication in her mouth. The Hospice nurse came over and took her vitals and said it was time to prepare myself for the end, though mom was not 'actively' dying at that moment. A chaplain called. Some close friends stayed with me throughout the day.. I could not have done it alone - Thank you Robert, Randy & Elaina.
The Hospice nurse suggested a diaper or catheter (she already has a colostomy bag for the other). I wanted her to go with dignity, I said she wouldn't want them. She was able to tell Randy she didn't want them either. She was taking a medication to relieve edema (swelling in the legs) and it makes her pee. The nurse said stop taking it. We did.
Friday came, and she was still bedridden, but a bit more 'with it'. She was not in much pain, just tired. Very tired. We had to lift her in and out of bed to put her on the commode to pee. Mom is 120+ pounds, so it is a two person job when she can't bear any of her own weight.
I don't know what happened Saturday, but she got a burst of energy. She could sit up, wanted to eat (albeit just a few bites here and there), and wanted to be wheeled outside to smoke. I don't have children of my own, but now I understand what it may be like to have a newborn child. A really big one. That smokes. Her legs were really swollen, and she wanted to take her edema medication. She was able to swallow pills again, so she did. (Remember, it makes you pee. A lot.)
Sunday was much of the same, she was bed-bound, but stable. I was running around and unstable. Luckily, my husband was here, and on Sunday he took care of mom's failing health and my failing emotions. I hurt my back with all of the lifting. Hubby was the lifter Sunday. He also lifted my spirits. Thanks Francis.
On Monday we knew there had to be a change. I could no longer pick her up so many times throughout the day to put her on the toilet. It was hard on her, and hard on me. By this time she could stand on her own for a few wobbly seconds, but it was getting her up and down. So, we revisited the catheter option. Mom agreed, it was time. She says it makes her feel like she has to pee all the time, but it is not that uncomfortable. This morning she said she was glad she did it. She is getting more rest now.
I took a few days off during this time and went back to work today. I did the morning show, and came home for the changing of the caretaker so Francis could go to work. I had not been outside of the house, not counting the porch, in six days. It was good to be out.
I will end this here without a snappy ending because there is no ending.
But I have realized what if really feels like to think the end is here for someone you love and is suffering, and sometimes a catheter is necessary. Yeah.
Thursday morning I called the nurse, family and close friends to say I thought the end was within days. She was pale and clammy, had shallow breaths, was not eating, could barely talk and did not have the strength to even sit up.
She was fading, I was a mess. She could not swallow pills and I had to put drops of her pain medication in her mouth. The Hospice nurse came over and took her vitals and said it was time to prepare myself for the end, though mom was not 'actively' dying at that moment. A chaplain called. Some close friends stayed with me throughout the day.. I could not have done it alone - Thank you Robert, Randy & Elaina.
The Hospice nurse suggested a diaper or catheter (she already has a colostomy bag for the other). I wanted her to go with dignity, I said she wouldn't want them. She was able to tell Randy she didn't want them either. She was taking a medication to relieve edema (swelling in the legs) and it makes her pee. The nurse said stop taking it. We did.
Friday came, and she was still bedridden, but a bit more 'with it'. She was not in much pain, just tired. Very tired. We had to lift her in and out of bed to put her on the commode to pee. Mom is 120+ pounds, so it is a two person job when she can't bear any of her own weight.
I don't know what happened Saturday, but she got a burst of energy. She could sit up, wanted to eat (albeit just a few bites here and there), and wanted to be wheeled outside to smoke. I don't have children of my own, but now I understand what it may be like to have a newborn child. A really big one. That smokes. Her legs were really swollen, and she wanted to take her edema medication. She was able to swallow pills again, so she did. (Remember, it makes you pee. A lot.)
Sunday was much of the same, she was bed-bound, but stable. I was running around and unstable. Luckily, my husband was here, and on Sunday he took care of mom's failing health and my failing emotions. I hurt my back with all of the lifting. Hubby was the lifter Sunday. He also lifted my spirits. Thanks Francis.
On Monday we knew there had to be a change. I could no longer pick her up so many times throughout the day to put her on the toilet. It was hard on her, and hard on me. By this time she could stand on her own for a few wobbly seconds, but it was getting her up and down. So, we revisited the catheter option. Mom agreed, it was time. She says it makes her feel like she has to pee all the time, but it is not that uncomfortable. This morning she said she was glad she did it. She is getting more rest now.
I took a few days off during this time and went back to work today. I did the morning show, and came home for the changing of the caretaker so Francis could go to work. I had not been outside of the house, not counting the porch, in six days. It was good to be out.
I will end this here without a snappy ending because there is no ending.
But I have realized what if really feels like to think the end is here for someone you love and is suffering, and sometimes a catheter is necessary. Yeah.
Monday, June 15, 2009
Dazed and Confused
Mom's body is fading, but her mind has been sharp, up until today.
We had her first 'confusion' episode. It happened this afternoon.
I was laying down because I had a blasting headache. I heard the clink, roll, clink, roll sound of mom's walker, but didn't think much about it. My husband happened to come home just then. He came into the room and woke me up out of my half-sleep.
"Your mom is confused and walking in circles," he said.
Since she hasn't shown any signs of confusion before, I thought he was the one who was confused.
"She's fine, I'm sure. Besides, she could use the exercise," I said.
Yeah. Bad, bad daughter.
I later found out that Francis went back out and guided her back to reality, and the couch. Good, good son-in-law.
Tonight she told me she wasn't afraid, she knew she was confused and it was just annoying. Where is it coming from? Liver/colon cancer isn't supposed to do this. It kills the body, not the mind. This confuses me.
Now I will keep a closer ear out for aimless walker sounds, and keep a closer eye on her mental state.
Oh yeah, and I'll try to be a better daughter.
We had her first 'confusion' episode. It happened this afternoon.
I was laying down because I had a blasting headache. I heard the clink, roll, clink, roll sound of mom's walker, but didn't think much about it. My husband happened to come home just then. He came into the room and woke me up out of my half-sleep.
"Your mom is confused and walking in circles," he said.
Since she hasn't shown any signs of confusion before, I thought he was the one who was confused.
"She's fine, I'm sure. Besides, she could use the exercise," I said.
Yeah. Bad, bad daughter.
I later found out that Francis went back out and guided her back to reality, and the couch. Good, good son-in-law.
Tonight she told me she wasn't afraid, she knew she was confused and it was just annoying. Where is it coming from? Liver/colon cancer isn't supposed to do this. It kills the body, not the mind. This confuses me.
Now I will keep a closer ear out for aimless walker sounds, and keep a closer eye on her mental state.
Oh yeah, and I'll try to be a better daughter.
Tuesday, June 2, 2009
Mom's Poker Face
I hate to say mom isn't doing well again, but she's not. This time it's a bit different.
She doesn't have a fever. There was no fall. She's just going down.
I give her a few weeks. She gives herself that as well.
She is having bad pains in her side, and her side is hard as a rock.
On a lighter note, my sister came out from Washington, D.C. and stayed for a few days this past weekend. On Saturday night we set up a poker game. To our surprise, mom wanted to play to. My sister had never played Texas Hold'em, and can't bluff worth crap. My husband thinks he can, but really can't. I underestimated mom.
She can't eat, can barely stay awake, but damn can that woman play poker! She bluffed her way into the lead, raising $1000 in chips in a game with a $20 buy in!
Talk about a poker face. Maybe it was years of experience. Maybe it was the morphine.
Either way, she was good. She didn't want to play for long. That was probably a good thing for us rookies.
OK, back to the sad stuff. Mom cut back on her pain meds because she thought they were making her constantly tired and giving her a lump in her throat. When the meds were down, she was still tired, had the lump, but the pain came back - so I told her to take more again.
Last night she said, "I'm sick of being sick."
This morning she told me, "I hope this is over soon, I don't want to feel like this anymore."
I don't want her feel like that anymore either.
She says she is still not depressed or anxious, and ready to go.
I believe her, despite her poker face.
She doesn't have a fever. There was no fall. She's just going down.
I give her a few weeks. She gives herself that as well.
She is having bad pains in her side, and her side is hard as a rock.
On a lighter note, my sister came out from Washington, D.C. and stayed for a few days this past weekend. On Saturday night we set up a poker game. To our surprise, mom wanted to play to. My sister had never played Texas Hold'em, and can't bluff worth crap. My husband thinks he can, but really can't. I underestimated mom.
She can't eat, can barely stay awake, but damn can that woman play poker! She bluffed her way into the lead, raising $1000 in chips in a game with a $20 buy in!
Talk about a poker face. Maybe it was years of experience. Maybe it was the morphine.
Either way, she was good. She didn't want to play for long. That was probably a good thing for us rookies.
OK, back to the sad stuff. Mom cut back on her pain meds because she thought they were making her constantly tired and giving her a lump in her throat. When the meds were down, she was still tired, had the lump, but the pain came back - so I told her to take more again.
Last night she said, "I'm sick of being sick."
This morning she told me, "I hope this is over soon, I don't want to feel like this anymore."
I don't want her feel like that anymore either.
She says she is still not depressed or anxious, and ready to go.
I believe her, despite her poker face.
Thursday, May 21, 2009
Beautiful Breakdown
It's been a slow smooth ride for the past few days. Mom can't eat to much because it hurts to swallow and she's sleeping more and more. She given up on putting her teeth in because that hurts too.
The roller coaster has slowed, now we are just coasting, albeit downhill.
As for me, I had an emotional breakdown(away from the eyes of mom). Crying, cranky and crass. I'm glad I did.
I have recently often felt overwhelmed, and there was a nagging urge to get away, take a break. Space. Diversion. Escape.
After my mini-meltdown, things have changed. Being here at home with her gives me a sense of peace. I don't need to get away anymore. I just want to be with her. She watches the Turner Classic Movies (TMC) channel 24 hours a day - literally. I caught myself turning it on in my room while I went to take a nap today. It was soothing to me - reminds me of mom - even though she was in the next room.
Geez, am I in the 'acceptance' stage of grief? The 'denial' one wasn't too bad, but the 'anger' one sucked.
I hope it lasts, when mom does not.
The roller coaster has slowed, now we are just coasting, albeit downhill.
As for me, I had an emotional breakdown(away from the eyes of mom). Crying, cranky and crass. I'm glad I did.
I have recently often felt overwhelmed, and there was a nagging urge to get away, take a break. Space. Diversion. Escape.
After my mini-meltdown, things have changed. Being here at home with her gives me a sense of peace. I don't need to get away anymore. I just want to be with her. She watches the Turner Classic Movies (TMC) channel 24 hours a day - literally. I caught myself turning it on in my room while I went to take a nap today. It was soothing to me - reminds me of mom - even though she was in the next room.
Geez, am I in the 'acceptance' stage of grief? The 'denial' one wasn't too bad, but the 'anger' one sucked.
I hope it lasts, when mom does not.
Friday, May 15, 2009
The Numbers Game
Good news, mom is better. I think I am too. How long will it last? Don't know. Today she had two requests:
1. Iced, decaf, latte, venti, vanilla squirt from Starbucks.
2. Beans from El Pollo Loco.
I got her both, including a topper of macaroni and cheese and cole slaw (from El Pollo Loco, not Starbucks).
I asked her today on a scale of one to 10 - one being deathbed, 10 being fabulous - where she was at?
She said she is a nine.
Cool. What a difference from the four she was just days ago. That takes me from a four to a nine as well. OK, maybe an eight. I know a nine for her is not a nine for a healthy person - but a nine is still a nine.
Albeit, a nine today may have been a five three months ago. But a four this week would have been a one two months ago. To confuse you even further, mom usually starts going down past a six when her fever is more than 100-degrees. When it hits 101-degrees, she is a five, and I need to be by her side.
Now, she is under 98-degrees, which elevates her to eight+, depending on how her stomach feels (+ or - two points margin of feeling crappy).
Her stomach feels fine. So, I am happy with a nine.
1. Iced, decaf, latte, venti, vanilla squirt from Starbucks.
2. Beans from El Pollo Loco.
I got her both, including a topper of macaroni and cheese and cole slaw (from El Pollo Loco, not Starbucks).
I asked her today on a scale of one to 10 - one being deathbed, 10 being fabulous - where she was at?
She said she is a nine.
Cool. What a difference from the four she was just days ago. That takes me from a four to a nine as well. OK, maybe an eight. I know a nine for her is not a nine for a healthy person - but a nine is still a nine.
Albeit, a nine today may have been a five three months ago. But a four this week would have been a one two months ago. To confuse you even further, mom usually starts going down past a six when her fever is more than 100-degrees. When it hits 101-degrees, she is a five, and I need to be by her side.
Now, she is under 98-degrees, which elevates her to eight+, depending on how her stomach feels (+ or - two points margin of feeling crappy).
Her stomach feels fine. So, I am happy with a nine.
Tuesday, May 12, 2009
Oh, Crappy Day
Mom has a fever tonight. She is sleeping about 18 hours a day, and taking enough pills to kill a junkie on Union Avenue. I need to be at home with her now - so I am taking a vacation day off work.My emotions - upside, downside, inside out. Will the next day hold relief? Misery? Where do we go from here? It's like a poker game - you never know the next hand you will be dealt. But in this game - there is no bluffing.
I pulled the Hospice nurse aside tonight - out of ear-shot from mom. Despite the so-called guide to dying "Gone From My Sight"(included in the Hospice welcome pack), there is really no concrete blueprint, no exact step-by-step manual for death. The nurse agreed, it could be tonight, tomorrow. It could be weeks, even months (I doubt the latter).
I have said this before - but I think the end is near, or at least near-er. Obviously, death is closer than it was before.
(Sorry, I'm going to emotional here, but these are my thoughts)I know the day is not far away when I will never see her, touch her, feel her again. Forever. Forever is a very long friggin' time.
Hence, the reality, sadness, utter devastation of the absence in the sole largest part of my life since the day I was born is setting in. She changed my dirty diapers, wiped my snotty nose, fed me, clothed me, cared for me when I was sick, punished me when I was acting like an ass. She encouraged me and believed in me when no one else did.
And (at least we think) her efforts paid off. Thanks mom - I love you.
Since my mom was diagnosed with metastasized colon cancer to the liver, I have had two friends who have lost their loved ones for the same condition. They were diagnosed later than mom, and died much earlier, within several weeks.
I cherish the time I have with her, but it hurts to see her deteriorate like this.
On a positive note - mom's spirits are fine - maybe it's her solid foundation in her spirituality, maybe it the morphine - either way, she is accepting and has found serenity in her fate.
As for me, I got some counseling from Hospice today. Good news, they say I am not 'depressed', but rather going through the first stage of grief. Good - I'm normal. This makes my grief much more manageable.
Mom let me take this picture of her tonight.
Monday, May 11, 2009
Mom's Last Mother's Day
This was mom's last Mother's Day.
I made her pancakes for breakfast. I put her in her wheelchair and took her to the bookstore to buy her some mystery novels. Today some flowers arrived from my brother. A DVD of Ester William's movies arrived from my sister.
Mom didn't say much. She doesn't anymore.
But when I asked her if she had a nice mother's day she said she did.
Mom is not sad or depressed, but I am sad. I don't want her to know how sad I really am because I don't want her to be sad that I'm sad.
When Hospice first came in they told us they had grief counseling. I didn't think I would need it. I do.
But I still don't want it because it's going to be a complete bawl-fest, and I don't know if I want to open the floodgates. Maybe it's time.
Here I go.. I'm picking up the phone to call them.
I made her pancakes for breakfast. I put her in her wheelchair and took her to the bookstore to buy her some mystery novels. Today some flowers arrived from my brother. A DVD of Ester William's movies arrived from my sister.
Mom didn't say much. She doesn't anymore.
But when I asked her if she had a nice mother's day she said she did.
Mom is not sad or depressed, but I am sad. I don't want her to know how sad I really am because I don't want her to be sad that I'm sad.
When Hospice first came in they told us they had grief counseling. I didn't think I would need it. I do.
But I still don't want it because it's going to be a complete bawl-fest, and I don't know if I want to open the floodgates. Maybe it's time.
Here I go.. I'm picking up the phone to call them.
Tuesday, May 5, 2009
Mom Missed her Deadline
In my business deadlines are a daily thing. They are not an option. You WILL make your deadline.
I have missed a few. Oh, the humility, the horror. There is little worse than the dreaded walk of missed deadline shame through the newsroom, past all of your peers (who made their deadline) knowing that for this day you are a complete and utter journalistic failure. No matter how good your story, if people don't know about it - it doesn't matter.
Mom missed her deadline. I want everyone to know.
The oncologist told us five months ago that at "the most" she had five months. Five months has come and gone, by just a few days.
I was talking about it with mom a few minutes ago.
"I honestly didn't think I would last this long," she said.
I asked her how much longer she thinks she has.
"I don't know," she replied.
I'm glad she's hanging in there. I admit, in the back of my mind there has been a quiet, haunting countdown to the end based on the oncologist's predictions. Now that the deadline has passed that annoying voice in my head can shut-up.
But I have to do a reality check, I don't think mom wants to live like this for an extended amount of time. Her ups and downs are taking a toll. She doesn't want to get out much in her wheelchair, and her appetite is flaky at best due to frequent bouts of nausea. Not much of a life, but she can still mosey around the house, read her books and watch old movies.
I just read that last paragraph and it is all over the place, but I am going to leave it, because that is my flip-floppy thought process over all this. She dying, but alive. Sick but kicking. Weigh the positives with the negatives, Yin-Yang, blah, blah, blah.
OK, I will leave that too.
Anyway, we are both glad she missed her deadline. Now she can go on her own schedule... and I don't want to know what it is.
I made her a grilled cheese this afternoon (with the crusts cut off). She ate the whole thing. She has lost 50 pounds now, but still holding at a healthy 130 pounds. She didn't want her face in the picture today because her dentures are hurting her mouth, and without them she thinks she looks like an old lady.
I have missed a few. Oh, the humility, the horror. There is little worse than the dreaded walk of missed deadline shame through the newsroom, past all of your peers (who made their deadline) knowing that for this day you are a complete and utter journalistic failure. No matter how good your story, if people don't know about it - it doesn't matter.
Mom missed her deadline. I want everyone to know.
The oncologist told us five months ago that at "the most" she had five months. Five months has come and gone, by just a few days.
I was talking about it with mom a few minutes ago.
"I honestly didn't think I would last this long," she said.
I asked her how much longer she thinks she has.
"I don't know," she replied.
I'm glad she's hanging in there. I admit, in the back of my mind there has been a quiet, haunting countdown to the end based on the oncologist's predictions. Now that the deadline has passed that annoying voice in my head can shut-up.
But I have to do a reality check, I don't think mom wants to live like this for an extended amount of time. Her ups and downs are taking a toll. She doesn't want to get out much in her wheelchair, and her appetite is flaky at best due to frequent bouts of nausea. Not much of a life, but she can still mosey around the house, read her books and watch old movies.
I just read that last paragraph and it is all over the place, but I am going to leave it, because that is my flip-floppy thought process over all this. She dying, but alive. Sick but kicking. Weigh the positives with the negatives, Yin-Yang, blah, blah, blah.
OK, I will leave that too.
Anyway, we are both glad she missed her deadline. Now she can go on her own schedule... and I don't want to know what it is.
I made her a grilled cheese this afternoon (with the crusts cut off). She ate the whole thing. She has lost 50 pounds now, but still holding at a healthy 130 pounds. She didn't want her face in the picture today because her dentures are hurting her mouth, and without them she thinks she looks like an old lady.
Tuesday, April 28, 2009
The Cancer Coaster
I am blogging more and more infrequently. I apologize to those who are following my blog. My emotions are leveling out - either I am blocking them out, or I am becoming so used to the wild ups and downs that it's becoming a normal ride.
The ups and downs are still here. There have been several nights I thought mom was going to die since I last posted.
On the flip side, we have gone to Wal Mart twice. I am really glad she didn't die in Wal Mart.
Mom's article came out in the annual report for San Joaquin Community Hospital. We did the interview several months ago when she was much better. It was about the hospital and what a wonderful job they did when she had her surgery.
She got a big kick out of it. The pictures were great, and the hospital staff was kind enough to give us a disk with the photos on it. There are 90 thousand copies of the magazine floating around, so if you get a chance, check it out. She looked awesome.
As for reality, mom is still slowly going down. Some days are good days, some are bad, but her good days now are like her bad days a few months ago.
I would like to thank everyone who has responded to this blog. The comments don't pop up, you have to click on the "comments" button below each post to read them.
I suggest you do. People have shared some very telling and emotional experiences with cancer and other illnesses. They make me feel like I'm not alone.
Thanks again.
The ups and downs are still here. There have been several nights I thought mom was going to die since I last posted.
On the flip side, we have gone to Wal Mart twice. I am really glad she didn't die in Wal Mart.
Mom's article came out in the annual report for San Joaquin Community Hospital. We did the interview several months ago when she was much better. It was about the hospital and what a wonderful job they did when she had her surgery.
She got a big kick out of it. The pictures were great, and the hospital staff was kind enough to give us a disk with the photos on it. There are 90 thousand copies of the magazine floating around, so if you get a chance, check it out. She looked awesome.
As for reality, mom is still slowly going down. Some days are good days, some are bad, but her good days now are like her bad days a few months ago.
I would like to thank everyone who has responded to this blog. The comments don't pop up, you have to click on the "comments" button below each post to read them.
I suggest you do. People have shared some very telling and emotional experiences with cancer and other illnesses. They make me feel like I'm not alone.
Thanks again.
Thursday, April 16, 2009
Mom isn't doing so Hot
This one will be quick and not very funny. Actually, not funny at all.
Mom is very, very weak. She won't eat. I am very worried. I know we have been on a hundred roller coaster rides since this started, but I never know which one is the grand finale.
I had to lift her into bed tonight. She can only walk with a walker, and that is shaky.
I had a terrible dream last night that she was face down in the bathtub full of water and I couldn't pull her out. I think that's a metaphor of how I feel right now.
She says she just feels weak. No depression. No 'bucket list'. Just tired and some pain, which we try to mask with meds.
I didn't blog for 14 days. That was a good thing - because things were pretty good. In fact, just a week ago we were talking about how that was the best she had been since they removed the colon cancer in November. But now the liver cancer is taking over.
Liver cancer is a twisted tease of a cancer. Good one day, bed-ridden the next, then back up again... or at least that is our experience.
I told her I would be staying in with her all weekend.
"Maybe we can go for a walk," she said. I told her if she was up to it. We both agreed she probably wouldn't be.
I took the picture in this blog a few minutes ago. She didn't wake when the flash went off. I hope it's not mom's last picture.
Wednesday, April 15, 2009
Mums the Word When it Comes to Mom
Mom lied to me.
My husband and I spent two nights away on a much-needed mini-vacation. Mom has a friend who is a registered nurse and she came to the house and stayed one night. Our close friends Robert and Randy called and checked on mom.
While I was away she told me she was fine. She sounded fine. She also told our friends she was fine as well.
When I got home I found mom was not fine. She was, and is, very weak and can hardly eat. I understand she didn't want me to worry, and didn't want to impose on our friends, but I wish she had.
When I asked her why she wasn't honest about her condition, she replied, "There's nothing anyone can do anyway."
I guess she's right, but it is my right as a daughter to share the burden of her pain.
This afternoon she got stuck lying down on the couch and couldn't get up without my help. She didn't eat the peanut butter and sweet pickle sandwich I made her, either. I know what you are thinking, but that's what she likes and what she asked for.
She doesn't have a fever, and the thrush is nearly gone. This time it's weakness, stomach pain and pain when she breathes deep. Always something new and exciting.
For mom, there will be no walks for now, no going to the store. But when she eats the sandwich I know she will be feeling better. I will keep you posted.
My husband and I spent two nights away on a much-needed mini-vacation. Mom has a friend who is a registered nurse and she came to the house and stayed one night. Our close friends Robert and Randy called and checked on mom.
While I was away she told me she was fine. She sounded fine. She also told our friends she was fine as well.
When I got home I found mom was not fine. She was, and is, very weak and can hardly eat. I understand she didn't want me to worry, and didn't want to impose on our friends, but I wish she had.
When I asked her why she wasn't honest about her condition, she replied, "There's nothing anyone can do anyway."
I guess she's right, but it is my right as a daughter to share the burden of her pain.
This afternoon she got stuck lying down on the couch and couldn't get up without my help. She didn't eat the peanut butter and sweet pickle sandwich I made her, either. I know what you are thinking, but that's what she likes and what she asked for.
She doesn't have a fever, and the thrush is nearly gone. This time it's weakness, stomach pain and pain when she breathes deep. Always something new and exciting.
For mom, there will be no walks for now, no going to the store. But when she eats the sandwich I know she will be feeling better. I will keep you posted.
Wednesday, April 1, 2009
A Fungus Among Us
We have a new hobby: Getting mom out of the house. Hospice dropped off a wheelchair-type contraption (all four wheels are small and someone has to push it). This has opened up a whole new world for us. Ahh, the great outdoors!
I want to shed some pounds and mom wants to shed some boredom, so now we go walking. We have gone to C.A.L.M., the Park at Riverwalk, and yesterday, the bluffs. We go just for about an hour each time, not too much at once. She says it makes her feel more alive. She just sits and rides, and I push. She looks forward to this time.
So, I knew something was really wrong when I came home from work today and she said she didn't want to go walking. Then, she stuck out her tongue. It was covered in a thick, white, pasty-looking coating. It was pretty gross and sad all at the same time.
"I think I have thrush," she said. It is clear, she does.
Mom says it hurts to eat. She told me that when she was working as a nurse one of her patients had thrush so bad he cound barely eat anything. At first, I wasn't too worried. But then, being the reporter that I am, I investigated, dug deeper, and got some answers about this thug called thrush.
Thrush is a fungus, a pathogenic yeast to be more precise. Candida albicans, it is technically called. Babies get it a lot. So do people with compromised immune systems. I say 'get it', but most of us already have it... a healthy immune system just keeps it in check.
But when it is down... it's carpe diem for those little suckers. They seize the day, the mouth, then the esophagus, the intestinal tract, and possibly the lungs and liver if left untreated. Yes, there is a fungus among us... and it can kill.
The good news is it can easily treated with anti-fungal medication.
The bad news is many anti-fungal medications are very hard on the liver.
Her liver is already the little engine that could and the medication could prove to be a boulder on the tracks.
We are waiting to hear back from Hospice about what medication they are going to prescribe. Of course, I will use my "investigatory" skills to make sure it isn't a liver slayer before she takes it. I trust the docs, but getting a second opinion never hurt (especially when it's my opinion).
In the meantime, the Mayo Clinic website recommends gargling with warm salt water and taking garlic pills. Yes, I checked, the garlic won't hurt the liver.
She can't gargle because she says she will throw up. I made her the concoction and told her just to swish. She swished just once. But she did take the garlic.
I have to honest, right now I am kind of pissed off. Not at her, of course, but at these stupid little microbes. Cancer, Candida, it's all crappy.
I want to shed some pounds and mom wants to shed some boredom, so now we go walking. We have gone to C.A.L.M., the Park at Riverwalk, and yesterday, the bluffs. We go just for about an hour each time, not too much at once. She says it makes her feel more alive. She just sits and rides, and I push. She looks forward to this time.
So, I knew something was really wrong when I came home from work today and she said she didn't want to go walking. Then, she stuck out her tongue. It was covered in a thick, white, pasty-looking coating. It was pretty gross and sad all at the same time.
"I think I have thrush," she said. It is clear, she does.
Mom says it hurts to eat. She told me that when she was working as a nurse one of her patients had thrush so bad he cound barely eat anything. At first, I wasn't too worried. But then, being the reporter that I am, I investigated, dug deeper, and got some answers about this thug called thrush.
Thrush is a fungus, a pathogenic yeast to be more precise. Candida albicans, it is technically called. Babies get it a lot. So do people with compromised immune systems. I say 'get it', but most of us already have it... a healthy immune system just keeps it in check.
But when it is down... it's carpe diem for those little suckers. They seize the day, the mouth, then the esophagus, the intestinal tract, and possibly the lungs and liver if left untreated. Yes, there is a fungus among us... and it can kill.
The good news is it can easily treated with anti-fungal medication.
The bad news is many anti-fungal medications are very hard on the liver.
Her liver is already the little engine that could and the medication could prove to be a boulder on the tracks.
We are waiting to hear back from Hospice about what medication they are going to prescribe. Of course, I will use my "investigatory" skills to make sure it isn't a liver slayer before she takes it. I trust the docs, but getting a second opinion never hurt (especially when it's my opinion).
In the meantime, the Mayo Clinic website recommends gargling with warm salt water and taking garlic pills. Yes, I checked, the garlic won't hurt the liver.
She can't gargle because she says she will throw up. I made her the concoction and told her just to swish. She swished just once. But she did take the garlic.
I have to honest, right now I am kind of pissed off. Not at her, of course, but at these stupid little microbes. Cancer, Candida, it's all crappy.
Thursday, March 26, 2009
Return of "The Mother"
I came down with a bug this week. I was tired, achy, feverish and just downright in the dumps. I sequestered myself to a bedroom for two days as to keep mom from getting sick(er).
I was going to leave and make the long drive home. But that, as she put it, would be like closing the barn door after the horse got out. Whatever I had she had likely been exposed to - most viruses have a several day incubation period before the person shows any symptoms.
So, I stayed in the bedroom. Door shut. I wiped down knobs after I touched them. We were never in the same room at the same time. At least that was the plan.
When a child gets sick around his or her mother, "the mother" in the mother comes out.
"Can I make you some soup?" mom asked several times while peering through the cracked door into my darkened lair of microbial activity.
"No, mom. I'm fine. Can you shut the door?" I replied, hoping my toxic airborne pathogens hadn't found her yet.
I was in the kitchen during my episode one day. I heard her say from the other room, "Don't worry, I will do the dishes."
No, she is not doing dishes. I quickly unloaded the clean dishes from the dishwasher and piled in the dirty ones. I knew "the mother" had re-emerged. And if I let mom be "the mother" it could turn into a mother of a problem. She still has limited energy.
I can guess it has been about five days since whatever I had began festering in my cells, and she has not gotten sick (my husband is). I have recovered.
Now, "the mother" in mom is quiet once again.
I was going to leave and make the long drive home. But that, as she put it, would be like closing the barn door after the horse got out. Whatever I had she had likely been exposed to - most viruses have a several day incubation period before the person shows any symptoms.
So, I stayed in the bedroom. Door shut. I wiped down knobs after I touched them. We were never in the same room at the same time. At least that was the plan.
When a child gets sick around his or her mother, "the mother" in the mother comes out.
"Can I make you some soup?" mom asked several times while peering through the cracked door into my darkened lair of microbial activity.
"No, mom. I'm fine. Can you shut the door?" I replied, hoping my toxic airborne pathogens hadn't found her yet.
I was in the kitchen during my episode one day. I heard her say from the other room, "Don't worry, I will do the dishes."
No, she is not doing dishes. I quickly unloaded the clean dishes from the dishwasher and piled in the dirty ones. I knew "the mother" had re-emerged. And if I let mom be "the mother" it could turn into a mother of a problem. She still has limited energy.
I can guess it has been about five days since whatever I had began festering in my cells, and she has not gotten sick (my husband is). I have recovered.
Now, "the mother" in mom is quiet once again.
Friday, March 20, 2009
Seasons of Our Life
Spring is officially here. Mom is still here. I remember when she first was diagnosed and got sick the leaves were starting to turn red and brown. One day I looked at the big tree in her backyard and thought of a story I had once heard.
It was about a little boy who had a very sick sister. The little boy was very young, about 4-years-old, and his mother didn't know how to tell him his sister was going to die. The doctor explained to the boy that she would be gone when all of the leaves fell off of the big tree in the yard. Time passed and his sister got worse. The leaves on the tree started to turn yellow, then brown. One day he saw the leaves falling. He grabbed a roll of tape and climbed the tree and started taping them back on the branches.
You know how it ends.
Anyway, I thought mom would be gone when all of the leaves fell off the tree in the backyard. I watched them turn brown and fall off. She has had a few close calls. But Spring is here, and so is she.
As the flowers bloom, she fades, but slowly. She is getting weaker, but can still do things on her own around the house.
I have heard people lasting a long time, years, with this kind of cancer, even though the doctor gave them only months to live.
Maybe she will be around to see the leaves fall one more time.
It was about a little boy who had a very sick sister. The little boy was very young, about 4-years-old, and his mother didn't know how to tell him his sister was going to die. The doctor explained to the boy that she would be gone when all of the leaves fell off of the big tree in the yard. Time passed and his sister got worse. The leaves on the tree started to turn yellow, then brown. One day he saw the leaves falling. He grabbed a roll of tape and climbed the tree and started taping them back on the branches.
You know how it ends.
Anyway, I thought mom would be gone when all of the leaves fell off the tree in the backyard. I watched them turn brown and fall off. She has had a few close calls. But Spring is here, and so is she.
As the flowers bloom, she fades, but slowly. She is getting weaker, but can still do things on her own around the house.
I have heard people lasting a long time, years, with this kind of cancer, even though the doctor gave them only months to live.
Maybe she will be around to see the leaves fall one more time.
Tuesday, March 10, 2009
We Are Very Aware
March is Colon Cancer Awareness Month. I am very aware of colon cancer. So is my mom. We live with it every day. I even know exactly what it looks like from the colonoscopy photo.
I got pretty pissed in the newsroom Monday. We had a story to cover about Colon Cancer Awareness Month, and a few people actually snickered when it was mentioned - like it wasn't worth our air time. I had to remind them that my mom is dying from colon cancer. I know they didn't mean any harm, but their comments did hurt.
Yes, ignorance is bliss. That's how we got in this situation in the first place. And ignorance can metastasize.
Colon cancer is one of the most preventable cancers out there. But unless you are personally touched by it, I don't think many people give it a second thought. Mom has to give it a first, second and third thought each time she has to change her colostomy bag.
She wouldn't be thinking about it if she had just had a preventative exam a few years ago. It would have been a tiny polyp that could have easily been removed during an outpatient visit.
But she never had one. Never even thought about it. Even as it was growing to the size of an almond, a plum, a tennis ball, she went about her regular life never knowing the beast was growing within. By the time we caught it, it was the size of a softball, and had ventured out the walls of her colon into her stomach and liver. by the time we caught it is was already a death sentence.
So do yourself a favor, go get checked. It you have polyps, get them removed. Do this every few years. While you may not avoid all cancers, I promise if you do this, Colon Cancer Awareness Month will never hold the same sad, regretful feelings for you as it does for mom and I.
I got pretty pissed in the newsroom Monday. We had a story to cover about Colon Cancer Awareness Month, and a few people actually snickered when it was mentioned - like it wasn't worth our air time. I had to remind them that my mom is dying from colon cancer. I know they didn't mean any harm, but their comments did hurt.
Yes, ignorance is bliss. That's how we got in this situation in the first place. And ignorance can metastasize.
Colon cancer is one of the most preventable cancers out there. But unless you are personally touched by it, I don't think many people give it a second thought. Mom has to give it a first, second and third thought each time she has to change her colostomy bag.
She wouldn't be thinking about it if she had just had a preventative exam a few years ago. It would have been a tiny polyp that could have easily been removed during an outpatient visit.
But she never had one. Never even thought about it. Even as it was growing to the size of an almond, a plum, a tennis ball, she went about her regular life never knowing the beast was growing within. By the time we caught it, it was the size of a softball, and had ventured out the walls of her colon into her stomach and liver. by the time we caught it is was already a death sentence.
So do yourself a favor, go get checked. It you have polyps, get them removed. Do this every few years. While you may not avoid all cancers, I promise if you do this, Colon Cancer Awareness Month will never hold the same sad, regretful feelings for you as it does for mom and I.
Friday, March 6, 2009
Dazed and Confused
My mom is a junkie.
Right now she has no choice. Suffer through pain, or take the Hospice meds as prescribed. Remember, the role of Hospice is to keep people comfortable while they die... and that means lots of drugs to keep them numb.
I am worried they are making her too numb. She was sitting on the porch the other day, book in one hand, cigarette in the other, arms outstretched with palms facing up. Her eyelids looked like heavy curtains. She looked like a monk in meditation.
"Mom, you look like a Buddah," I told her.
"Huh? I can't keep my eyes open," she said.
This can be a problem. The eyes need to be open if one is going to read, watch TV, or, as she did yesterday, use a very sharp knife out to cut celery. Nothing bad happened... her eyelids started falling and I finished.
She reads all day long. That used to mean nearly a book a day. Now it means a few pages.
"I read one word, shut my eyes, then open them back up and read the same word again," mom said. I told her it would probably take her 20 years to finish the book at that rate. She agreed.
She also needs someone there nearly all of the time. Paid caretakers can get quite expensive, so my husband Francis has basically moved in with us... he can be there for her while I'm at work, and there for me in the evenings.
Hospice said mom can handle the amount of meds she's one. But last night we decided that she is cutting back, as long as she is not in pain.
She does have a lot of books to get through.
Right now she has no choice. Suffer through pain, or take the Hospice meds as prescribed. Remember, the role of Hospice is to keep people comfortable while they die... and that means lots of drugs to keep them numb.
I am worried they are making her too numb. She was sitting on the porch the other day, book in one hand, cigarette in the other, arms outstretched with palms facing up. Her eyelids looked like heavy curtains. She looked like a monk in meditation.
"Mom, you look like a Buddah," I told her.
"Huh? I can't keep my eyes open," she said.
This can be a problem. The eyes need to be open if one is going to read, watch TV, or, as she did yesterday, use a very sharp knife out to cut celery. Nothing bad happened... her eyelids started falling and I finished.
She reads all day long. That used to mean nearly a book a day. Now it means a few pages.
"I read one word, shut my eyes, then open them back up and read the same word again," mom said. I told her it would probably take her 20 years to finish the book at that rate. She agreed.
She also needs someone there nearly all of the time. Paid caretakers can get quite expensive, so my husband Francis has basically moved in with us... he can be there for her while I'm at work, and there for me in the evenings.
Hospice said mom can handle the amount of meds she's one. But last night we decided that she is cutting back, as long as she is not in pain.
She does have a lot of books to get through.
Tuesday, March 3, 2009
Mom's New Ride
Brenda's got some new wheels. No flashy rims, no spinners, but now she can roll. Good thing too, because otherwise she would fall.
She is now using a walker in the house full time. This is a big step, or a bunch of little rolling steps, anyway.
The walker became necessary as of Monday. She was having a lot of liver pain, and Hospice upped her meds. She said her legs felt wobbly, like they were going to buckle beneath her. Time for the walker.
I know this could mentally be hard for her. I think she's worried it makes her look like an old lady. But the reality is she feels much more stable and so do I.
I tried to push it one step further today. We were in the living room watching another marathon session of reality TV cooking shows, and I wanted to get out of the house.
"Can I put you in the wheelchair and we'll go around the block," I asked.
"No," she said. For now, me pushing her in the wheelchair is pushing it.
The walker used to belong to my grandmother. It has tennis balls stuck on the bottom of both of the back legs. It makes the ride much smoother. I told mom we could pimp her walker. When I explained what that meant she smiled.
I'm thinking some purple tennis balls with sparkles.
She is now using a walker in the house full time. This is a big step, or a bunch of little rolling steps, anyway.
The walker became necessary as of Monday. She was having a lot of liver pain, and Hospice upped her meds. She said her legs felt wobbly, like they were going to buckle beneath her. Time for the walker.
I know this could mentally be hard for her. I think she's worried it makes her look like an old lady. But the reality is she feels much more stable and so do I.
I tried to push it one step further today. We were in the living room watching another marathon session of reality TV cooking shows, and I wanted to get out of the house.
"Can I put you in the wheelchair and we'll go around the block," I asked.
"No," she said. For now, me pushing her in the wheelchair is pushing it.
The walker used to belong to my grandmother. It has tennis balls stuck on the bottom of both of the back legs. It makes the ride much smoother. I told mom we could pimp her walker. When I explained what that meant she smiled.
I'm thinking some purple tennis balls with sparkles.
Friday, February 27, 2009
"Yo mom, how YOU doin'?"
I am lucky as a caretaker in the sense that my mom can be her own caretaker much of the time. While I like to be with her most of the time, some of the time, I need time for myself. So does she.
This wasn't easy to come to terms with. For the first few weeks when she was home from surgery we paid a 'sitter' to stay with her while I was at work. She may have needed it... for a few days. Mom told me it was not necessary. I thought it was. I also thought it was necessary for me to check on her every move.
Every time she flexed a muscle I would ask, "Where are you going?" "Need anything?" "What can I get you?" Mind you, she moves around a lot.
I had my eagle eye on her. There would be no slips, no falls. Not on my watch. I was the sergeant of safety, the CIA of mom's every move, the Barney Fife of home healthcare. Poor mom.
I didn't count, but I can guess I asked her, "How ya' doing?" "What ya' doing?" "Where ya' going?" dozens of times a day. How annoying for her.
She would always answer me, "To pee." "Get something to eat." "Blow my nose." "Change my (colostomy) bag."
I realized that all of this vulturesque behavior was probably not necessary after she sat me down and told me that very directly. About 13 times. I also got a clue that the home healthcare aide didn't need to be there on a regular basis because mom was making the aide breakfast. It may have helped that the Hospice social worker and other former caretakers told me I could leave her at times, health permitting. Mom is OK, much of the time.
Things have changed. We got her LifeAlert, which is like a 9-1-1 button around her neck. But of course, with my twisted mind, when she falls and can't get up I worry the button will be wedged someplace like under her back, just out of reach. I know, that probably won't happen. The more likely scenario is the cat will set it off laying on her stomach.
I have been home (to my house) just three times. I live about an hour away in the mountains. However, I did spend the weekend in Kernville for Whiskey Flat Days. Our close friends Robert and Randy physically checked on her, as I did verbally with frequent phone calls. I needed that time away. She needed the time away from me. But I did still feel guilty.
Mom started eating solid food again yesterday, and was getting along just splendid. So, I planned to head for the hills today. My hills, my home. I was excited about seeing my house, my dogs, my real bed. Then I got home (mom's home) after work. Mom is having a small episode. She was vomiting and is nauseated. She was laying in bed when she told me this. There was a cat sitting directly on her stomach.
"Maybe the cat is making your tummy hurt," I said.
No, she said, that wasn't it.
There will be no frolicking in the hills for me, at least for today. I'm OK with that. My house isn't going anywhere. But my mom is. So tonight, I will be here.
Wednesday, February 25, 2009
Where's the Beet?
I don't have kids, so I've missed out on the vast array of wondrous culinary surprises that have been smashed, blended and pureed into tiny jars in the baby food aisle. That has all changed.
Mom stopped eating solid food, solidly, two day ago. The deal we agreed upon is when she stops eating, she stops eating. I have been a bit concerned. She's not in pain, and still shuffling around the house, but a bit tired, as usual. Still, the food thing is pretty important in sustaining life.
Today we found a solution to her recently acquired anorexia. This morning before I came home from work to check on her about 7:30 a.m., she asked me to get her some baby food: peaches and cereal. When I got home, the hospice nurse had arrived. I laid out a spread of about seven varieties of various pureed baby cereal and fruit. I didn't really think she would eat it. I was wrong. As the hospice nurse sat across the table from her asking her questions about how she was doing, mom ate. Quickly. The small jar was gone in about three minutes. Cool.
She then told the nurse that when I was a child my choice for baby food was red beets. She said I would eat the whole jar, and to paraphrase, it would come out red the other end as well. Something in that story must have stuck with mom for many hours.
When I got home she wanted to go to the store. She wanted more baby food, a particular baby food: red beets.
Was this a twisted experiment? She does have a clear colostomy bag.
No, I really think she just wanted beets.
Mind you, this is the first time she has been out of the house in a few weeks so it's kind of a big deal. We got to Albertson's and she cruised over to the baby food aisle in the motorized cart.
The choices of beige blends in tiny jars seemed endless. I'm sure each has a unique taste inside, but outside, they are only distinguishable by the label. Mom stared at the dozens of brands stacked four rows high, straining to read the contents.
So I helped out, "There's apple-banana oatmeal. Peas and carrots. Sweet potatoes..."
"I'm looking for beets," she said. "They gotta have beets."
"I don't see any beets, mom," I replied, as I visually scanned the jars.
I could sense her stomach sink a tad. But, we grabbed about seven jars of fruits and veggies, then she saw the pink-hued blended meats, and that seemed to suffice. I was glad she passed over the blended veal.
When we got home, she was very tired. I asked if she wanted to go lay down, and she said she just wanted to look at her jars of baby food for a minute. Choices. For her, they were true gastronomical treasures. Food, once again.
She ate a whole jar of pureed peaches. The baby food she ate today was the most she had eaten in two days. I will continue my quest in secret for those darn red beets.
Mom stopped eating solid food, solidly, two day ago. The deal we agreed upon is when she stops eating, she stops eating. I have been a bit concerned. She's not in pain, and still shuffling around the house, but a bit tired, as usual. Still, the food thing is pretty important in sustaining life.
Today we found a solution to her recently acquired anorexia. This morning before I came home from work to check on her about 7:30 a.m., she asked me to get her some baby food: peaches and cereal. When I got home, the hospice nurse had arrived. I laid out a spread of about seven varieties of various pureed baby cereal and fruit. I didn't really think she would eat it. I was wrong. As the hospice nurse sat across the table from her asking her questions about how she was doing, mom ate. Quickly. The small jar was gone in about three minutes. Cool.
She then told the nurse that when I was a child my choice for baby food was red beets. She said I would eat the whole jar, and to paraphrase, it would come out red the other end as well. Something in that story must have stuck with mom for many hours.
When I got home she wanted to go to the store. She wanted more baby food, a particular baby food: red beets.
Was this a twisted experiment? She does have a clear colostomy bag.
No, I really think she just wanted beets.
Mind you, this is the first time she has been out of the house in a few weeks so it's kind of a big deal. We got to Albertson's and she cruised over to the baby food aisle in the motorized cart.
The choices of beige blends in tiny jars seemed endless. I'm sure each has a unique taste inside, but outside, they are only distinguishable by the label. Mom stared at the dozens of brands stacked four rows high, straining to read the contents.
So I helped out, "There's apple-banana oatmeal. Peas and carrots. Sweet potatoes..."
"I'm looking for beets," she said. "They gotta have beets."
"I don't see any beets, mom," I replied, as I visually scanned the jars.
I could sense her stomach sink a tad. But, we grabbed about seven jars of fruits and veggies, then she saw the pink-hued blended meats, and that seemed to suffice. I was glad she passed over the blended veal.
When we got home, she was very tired. I asked if she wanted to go lay down, and she said she just wanted to look at her jars of baby food for a minute. Choices. For her, they were true gastronomical treasures. Food, once again.
She ate a whole jar of pureed peaches. The baby food she ate today was the most she had eaten in two days. I will continue my quest in secret for those darn red beets.
Monday, February 23, 2009
"What to Expect When You are Expecting Terminal Cancer"
OK, there is a death manual. Sort of.
When my mom was in the hospital in November after we had "Avery" removed, she went on hospice right away (a good move, might I add). A hospice counselor came to the hospital room and handed me a white folder.
I thought it was a bit soon to be planning for her death. I mean, I knew she was terminal, not that terminal. Anyway, the hospice folder was weird. It was kind of a "Dying for Idiots" guide. The white folder that contained a variety of material, from a list of support groups to how not to blow yourself up with oxygen in the house to, well, some other stuff I knew would be kinda hard to read. I noticed the ominous juxtaposition of some of those titles, such as the "Hospice… it's all about living," pamphlet, which, ironically ,was placed neatly in front of the "Newspaper Obituary Worksheet".
Hmmm, which should I read first? I started with the crappy, sad "already dead" stuff, and worked my way back to the "living". I chose to kick-off my hospice experience with the "Newspaper Obituary Worksheet". It asked for things like her schooling, employment, hobbies, community activities, and so on. I looked at it thinking, 'Who would need a friggin' worksheet to write an obituary with?, I know all this!'
Then I realized, when 'it' happens, I might be so shaken that I may not be able to remember that she went to nursing school in McNary, Arizona, or that she volunteered for years with the hospital auxiliary in Yuma (Actually, even now I had to pause to recall that last one.). It has a place to list surviving loved ones. Can't leave anyone out. Mom was not a veteran, so I will leave that one blank. But where is asks for "Wars/Conflicts" I think I will put "cancer'. Yes, I can see this being useful.
Then there is the "Hospice… it's all about living" pamphlet. It explains the services provided by hospice. I didn't really know what they were, and honestly I didn't read it, but the counselor explained it to me, so I will explain it to you. Hospice provides comfort to the terminally ill. Free. They provide free pain medication, sedatives and whatever else one needs to cross over with as little pain as possible. They gave (lent) us an oxygen so mom can breath easier. They lent us a hospital bed so she can get up easier, a shower stool so she can bath easier, and even a portable toilet so she doesn't have to go far when she has to go. She has used them all, and yes, they have made life into death a lot easier, and cleaner. A nurse comes and visits her a few times a week. A social worker comes by to check on her condition (and mine) at least once a month.
I just now opened up the pamphlet that I just said I hadn't read, and yes it's all in there, plus a little more.
There is a pamphlet about what to do when the patient is too sick to make medical decisions for themselves, encouraging the patient to quickly get a 'durable power of attorney for medical care.' We had already done this before she went into the hospital. I can't tell you how important this is. Remember Terry Schiavo? I don't think anyone really wants to waste away as a mindless vegetable for decades while family members fight over keeping you alive with machines. Enough said. Hospice can help you avoid this.
OK, back to the handbook for death and dying. I saved one booklet for last, because it is so difficult to read.
When I pulled it out of the white folder while I was sitting next to my mom's hospital bed, I read the title out loud. I burst into tears. So did the counselor. It's a small light blue booklet with a very simple sketch of an old ship sailing off into the sea, nearly on the horizon.
"GONE FROM MY SIGHT," it read. The reality set in. Say your goodbyes, this is a one-way voyage, and it is Brenda's final voyage.
My mom is on the horizon sailing out of my sight. Forever.
I refused to read it. I thought the cover was really harsh. Throw it in my face, why don't ya!? I didn't even want to know what was inside. The counselor told me I should read it and the booklet was very helpful. Yeah, helpful to make me totally depressed. Thanks.
When we came home I left my Dying for Idiots folder on the table. I knew that little, mean blue book was inside, just waiting to throw my fragile emotions into a deep, dark pit of loathing and despair. But, curiosity got the best of me. I'm glad it did.
It is written by a woman named Barbara Karnes. In her words, it is a guideline for dying. I have since learned Karnes was a hospice nurse for nearly three decades, and during that time noticed patterns with people who were in the last few months, weeks, days and hours of dying. It is a morbid final 'to do' list, so when your loved one checks off another item, you know about what stage they are at in the process of death.
Karnes says in the little blue book that not everyone is the same, and some who are terminally ill will experience all of the symptoms, others none. Here are some of them:
One to three months prior to death:
Withdrawal - from visitors and even loved ones.
Food - Not as much.
Sleep - More than before.
One to two weeks prior to death:
Disorientation - lots of sleep, confusion.
Physical Changes - lower blood pressure, fluctuating body temperature, changes in skin color, increased\decreased respiration.
One to two days to hours prior to death:
Intensity in aforementioned signs.
Surge of energy - talking, even eating again - or no activity at all. Congestion.
Blotchy skin.
Glassy eyes.
Minutes prior to death:
Fish out of water breathing
Cannot be awakened
It has been nearly three months since I have ready the scary, evil, little blue book that made me cry by my mom's bedside.
She is hovering within the months to weeks. I look for the signs. I see some, not others. Without this book I may not know what I am looking for. She has had a few fevers and severe pains where I though she could die (I will get into this later), but she recovered quickly. Still, she is checking off her list.
This week she has been sleeping a lot more. Sleeping like cat, about 20 hours a day. Check.
She doesn't want to go to Target or the supermarket and roll around in the motorized cart. She doesn't want to go anywhere. Check. She doesn't want any visitors. She has fluctuating temperatures. Check. Check.
But, she is eating just fine, reading her novels and frequently going outside to smoke (like it matters now).
She just went back to bed right now. Again. But according to my Dying for Idiots guide, at least for today, I think (I hope) my mom will be here tomorrow.
When my mom was in the hospital in November after we had "Avery" removed, she went on hospice right away (a good move, might I add). A hospice counselor came to the hospital room and handed me a white folder.
I thought it was a bit soon to be planning for her death. I mean, I knew she was terminal, not that terminal. Anyway, the hospice folder was weird. It was kind of a "Dying for Idiots" guide. The white folder that contained a variety of material, from a list of support groups to how not to blow yourself up with oxygen in the house to, well, some other stuff I knew would be kinda hard to read. I noticed the ominous juxtaposition of some of those titles, such as the "Hospice… it's all about living," pamphlet, which, ironically ,was placed neatly in front of the "Newspaper Obituary Worksheet".
Hmmm, which should I read first? I started with the crappy, sad "already dead" stuff, and worked my way back to the "living". I chose to kick-off my hospice experience with the "Newspaper Obituary Worksheet". It asked for things like her schooling, employment, hobbies, community activities, and so on. I looked at it thinking, 'Who would need a friggin' worksheet to write an obituary with?, I know all this!'
Then I realized, when 'it' happens, I might be so shaken that I may not be able to remember that she went to nursing school in McNary, Arizona, or that she volunteered for years with the hospital auxiliary in Yuma (Actually, even now I had to pause to recall that last one.). It has a place to list surviving loved ones. Can't leave anyone out. Mom was not a veteran, so I will leave that one blank. But where is asks for "Wars/Conflicts" I think I will put "cancer'. Yes, I can see this being useful.
Then there is the "Hospice… it's all about living" pamphlet. It explains the services provided by hospice. I didn't really know what they were, and honestly I didn't read it, but the counselor explained it to me, so I will explain it to you. Hospice provides comfort to the terminally ill. Free. They provide free pain medication, sedatives and whatever else one needs to cross over with as little pain as possible. They gave (lent) us an oxygen so mom can breath easier. They lent us a hospital bed so she can get up easier, a shower stool so she can bath easier, and even a portable toilet so she doesn't have to go far when she has to go. She has used them all, and yes, they have made life into death a lot easier, and cleaner. A nurse comes and visits her a few times a week. A social worker comes by to check on her condition (and mine) at least once a month.
I just now opened up the pamphlet that I just said I hadn't read, and yes it's all in there, plus a little more.
There is a pamphlet about what to do when the patient is too sick to make medical decisions for themselves, encouraging the patient to quickly get a 'durable power of attorney for medical care.' We had already done this before she went into the hospital. I can't tell you how important this is. Remember Terry Schiavo? I don't think anyone really wants to waste away as a mindless vegetable for decades while family members fight over keeping you alive with machines. Enough said. Hospice can help you avoid this.
OK, back to the handbook for death and dying. I saved one booklet for last, because it is so difficult to read.
When I pulled it out of the white folder while I was sitting next to my mom's hospital bed, I read the title out loud. I burst into tears. So did the counselor. It's a small light blue booklet with a very simple sketch of an old ship sailing off into the sea, nearly on the horizon.
"GONE FROM MY SIGHT," it read. The reality set in. Say your goodbyes, this is a one-way voyage, and it is Brenda's final voyage.
My mom is on the horizon sailing out of my sight. Forever.
I refused to read it. I thought the cover was really harsh. Throw it in my face, why don't ya!? I didn't even want to know what was inside. The counselor told me I should read it and the booklet was very helpful. Yeah, helpful to make me totally depressed. Thanks.
When we came home I left my Dying for Idiots folder on the table. I knew that little, mean blue book was inside, just waiting to throw my fragile emotions into a deep, dark pit of loathing and despair. But, curiosity got the best of me. I'm glad it did.
It is written by a woman named Barbara Karnes. In her words, it is a guideline for dying. I have since learned Karnes was a hospice nurse for nearly three decades, and during that time noticed patterns with people who were in the last few months, weeks, days and hours of dying. It is a morbid final 'to do' list, so when your loved one checks off another item, you know about what stage they are at in the process of death.
Karnes says in the little blue book that not everyone is the same, and some who are terminally ill will experience all of the symptoms, others none. Here are some of them:
One to three months prior to death:
Withdrawal - from visitors and even loved ones.
Food - Not as much.
Sleep - More than before.
One to two weeks prior to death:
Disorientation - lots of sleep, confusion.
Physical Changes - lower blood pressure, fluctuating body temperature, changes in skin color, increased\decreased respiration.
One to two days to hours prior to death:
Intensity in aforementioned signs.
Surge of energy - talking, even eating again - or no activity at all. Congestion.
Blotchy skin.
Glassy eyes.
Minutes prior to death:
Fish out of water breathing
Cannot be awakened
It has been nearly three months since I have ready the scary, evil, little blue book that made me cry by my mom's bedside.
She is hovering within the months to weeks. I look for the signs. I see some, not others. Without this book I may not know what I am looking for. She has had a few fevers and severe pains where I though she could die (I will get into this later), but she recovered quickly. Still, she is checking off her list.
This week she has been sleeping a lot more. Sleeping like cat, about 20 hours a day. Check.
She doesn't want to go to Target or the supermarket and roll around in the motorized cart. She doesn't want to go anywhere. Check. She doesn't want any visitors. She has fluctuating temperatures. Check. Check.
But, she is eating just fine, reading her novels and frequently going outside to smoke (like it matters now).
She just went back to bed right now. Again. But according to my Dying for Idiots guide, at least for today, I think (I hope) my mom will be here tomorrow.
A blog about caring for a terminally ill loved one
This sucks.
My 68-year-old mom, Brenda, is dying from secondary liver cancer which began as colon cancer. I am her primary caretaker.
It is painful for her, and painful for me. The cancer is far past any hope of treatment. Being a former registered nurse, my mom has dealt with death and dying her whole life, and in her final moments she has chosen quality of life over quantity of life. I get it. Why undergo chemo treatment that would make you sick more of the time, when you may just be sick some of the time from the cancer?
Anyway, the reason I have decided to write this blog (with mom's permission) is to show others who are going through similar situations that they are not alone. And second (which really should be first) is I need help with this. I need to know I am not alone. I have never done this before and I usually have to do things a few times before I get really good at them. Hopefully, I will never have to 'get good' at this.
I am the imperfect caretaker. I am flawed, in the dark, scared and confused. OK, I know I am not alone. So, I am seeking out the other imperfect caretakers (and perfect ones if they actually exist) to join in this conversation. I would also like to hear from the patients themselves. You don't need to have cancer - any debilitating illness or injury will do. When it comes down to it - it is much the same. Tell me your thoughts struggles, fears, triumphs and all things patient and caretaker.
Well, I guess I should go first.
In the summer of 2008 my mom was feeling sick. She had constant diarrhea (I mean constant) and a low grade fever. She thought she had a flu she just couldn't kick. Her primary doctor referred her to a gastroenterologist (stomach\intestine) specialist. The specialist wanted to do a colonoscopy. You know, where they put a tube with camera up your bum.
I remember going to the appointment with her. When they wheeled her out we were laughing that a camera was up her bum. She was loaded from the meds and cracking up. I was cracking up that she was loaded on meds. Then the doctor walked in. The look on her face said it all. This was not good.
Brenda had two masses in her lower colon, one so large the doctor couldn't even get the camera past it. This was the cause of her diarrhea.
But we both took it in stride, made jokes, hoped for a quick fix.
Here is an email I wrote in late October:
"All of you are good friends, old friends or family, and most of you know my mom, commonly referred to as 'the Brenda'. The Brenda has been diagnosed with colon cancer. It is a tough time, and I will be her primary caretaker due to geography. While it is a serious issue, you all know me, and this has become my outlet to add a little healthy laughter to an unhealthy situation. If you have any questions feel free to ask. We do not know the stage yet, or if it has metastasized, but is has been growing for quite some time. She feels a bit tired, and has problems with unmentionable bodily functions (which I just mentioned), but is otherwise just as cocky and cantankerous as normal. We are waiting to get approval for surgery from her insurance "INsecure Horizons". Then we will know more. I will let you all know.
So, in the meantime, we have still not determined the sex of the tumor. I want to know, but she wants it to be a surprise... and since she is physically carrying it - I guess it is her choice. We have mulled over a few names... unisex of course. I like 'Avery'. She is leaning towards 'Terry'. You can clearly see why mine is the better choice. The bright side is I have a power of attorney when she cannot make decision for herself (like general anesthesia) , hence, 'Avery' it is. We have, however, agreed on a theme for our growing bundle of wonders - cats. While we have decided to forgo the traditional tumor shower, for those of you that cannot resist, we have registered at Target, Tumors-R-Us and the Colostomy Baggery (We absolutely adore the new pawprint line!)."
The humor quickly faded. It took several more weeks before we could get the CT scan. It was a few more weeks before we could see the surgeon. The waiting was hell. So was his diagnosis. She had late stage colon cancer that has metastasized to her liver. He would need to operate and she would have colostomy bag (I actually looked, there is no paw-print line). She asked the doctor if her colon could be reconnected and the bag ditched when she recovered. He hesitantly said, "Technically it is possible."
I knew what he meant. Brenda will not be recovering. She had the surgery on November 14th. It went very smooth, the eight-day stay at San Joaquin Hospital was comfortable.
But what lie ahead in the months to come would be anything but.
(To be continued)
My 68-year-old mom, Brenda, is dying from secondary liver cancer which began as colon cancer. I am her primary caretaker.
It is painful for her, and painful for me. The cancer is far past any hope of treatment. Being a former registered nurse, my mom has dealt with death and dying her whole life, and in her final moments she has chosen quality of life over quantity of life. I get it. Why undergo chemo treatment that would make you sick more of the time, when you may just be sick some of the time from the cancer?
Anyway, the reason I have decided to write this blog (with mom's permission) is to show others who are going through similar situations that they are not alone. And second (which really should be first) is I need help with this. I need to know I am not alone. I have never done this before and I usually have to do things a few times before I get really good at them. Hopefully, I will never have to 'get good' at this.
I am the imperfect caretaker. I am flawed, in the dark, scared and confused. OK, I know I am not alone. So, I am seeking out the other imperfect caretakers (and perfect ones if they actually exist) to join in this conversation. I would also like to hear from the patients themselves. You don't need to have cancer - any debilitating illness or injury will do. When it comes down to it - it is much the same. Tell me your thoughts struggles, fears, triumphs and all things patient and caretaker.
Well, I guess I should go first.
In the summer of 2008 my mom was feeling sick. She had constant diarrhea (I mean constant) and a low grade fever. She thought she had a flu she just couldn't kick. Her primary doctor referred her to a gastroenterologist (stomach\intestine) specialist. The specialist wanted to do a colonoscopy. You know, where they put a tube with camera up your bum.
I remember going to the appointment with her. When they wheeled her out we were laughing that a camera was up her bum. She was loaded from the meds and cracking up. I was cracking up that she was loaded on meds. Then the doctor walked in. The look on her face said it all. This was not good.
Brenda had two masses in her lower colon, one so large the doctor couldn't even get the camera past it. This was the cause of her diarrhea.
But we both took it in stride, made jokes, hoped for a quick fix.
Here is an email I wrote in late October:
"All of you are good friends, old friends or family, and most of you know my mom, commonly referred to as 'the Brenda'. The Brenda has been diagnosed with colon cancer. It is a tough time, and I will be her primary caretaker due to geography. While it is a serious issue, you all know me, and this has become my outlet to add a little healthy laughter to an unhealthy situation. If you have any questions feel free to ask. We do not know the stage yet, or if it has metastasized, but is has been growing for quite some time. She feels a bit tired, and has problems with unmentionable bodily functions (which I just mentioned), but is otherwise just as cocky and cantankerous as normal. We are waiting to get approval for surgery from her insurance "INsecure Horizons". Then we will know more. I will let you all know.
So, in the meantime, we have still not determined the sex of the tumor. I want to know, but she wants it to be a surprise... and since she is physically carrying it - I guess it is her choice. We have mulled over a few names... unisex of course. I like 'Avery'. She is leaning towards 'Terry'. You can clearly see why mine is the better choice. The bright side is I have a power of attorney when she cannot make decision for herself (like general anesthesia) , hence, 'Avery' it is. We have, however, agreed on a theme for our growing bundle of wonders - cats. While we have decided to forgo the traditional tumor shower, for those of you that cannot resist, we have registered at Target, Tumors-R-Us and the Colostomy Baggery (We absolutely adore the new pawprint line!)."
The humor quickly faded. It took several more weeks before we could get the CT scan. It was a few more weeks before we could see the surgeon. The waiting was hell. So was his diagnosis. She had late stage colon cancer that has metastasized to her liver. He would need to operate and she would have colostomy bag (I actually looked, there is no paw-print line). She asked the doctor if her colon could be reconnected and the bag ditched when she recovered. He hesitantly said, "Technically it is possible."
I knew what he meant. Brenda will not be recovering. She had the surgery on November 14th. It went very smooth, the eight-day stay at San Joaquin Hospital was comfortable.
But what lie ahead in the months to come would be anything but.
(To be continued)
Subscribe to:
Posts (Atom)
