Kiasmama
04-14-2008, 10:41 PM
I've been in this board section the past few days and what a comfort it has been. Just knowing what to expect and to know mom isn't in any pain is a big relief.
We brought mom home on sunday for home hospice care. Here is a little background; Mom has COPD for many years now. She stopped smoking 3 years ago, same time she went on O2. Before that she'd had lung scans about once a year. There was a spot, but it didn't change shape, size, anything in many years...so I guess the doc stopped them.
About two months ago, her breathing got a bit worse...I was just getting over a terrible respiratory infection, so we all figured she got it. We noticed she was using her inhaler a lot..and finally went to get it checked out. Chest X ray showed nothing...so doc gave her antibiotics and thought it was a cold.
She kept getting worse...doc checked her in the hospital about a week ago. Did a CAT scan, then discharged her to go to her Pulmunologist appt on Wednesday (previously scheduled, she saw him about twice a year) The CAT scan showed a large mass against her lung. The doc wanted to take a biopsy, PET scan and go from there. He mentioned cancer, but wanted to be sure.
So we get home...horrible ride for mom. PET scan was scheduled for Friday. Thursday she was having a horrible time breathing so we took her to the ER of the hospital she was having the PET scan at. She was admitted. The doc decided to do a biopsy first, then we would schedule a PET scan.
SO (sorry I'm getting long winded) she's in the hospital and getting worse every day. She refused a second CAT scan of her body to see where else the tumors were. She was afraid she wouldn't be able to breathe in the ring. (she can hardly breath when laying flat) So the doc talked to us about it and he gave her the news that he is 99% sure it's SCLC (biopsy actually came back today, but we didn't call)
Ok, so she gets discharged to home hospice on sunday....and here I am. The hospice people are wonderful! but I do have some questions about the end.
How long to the changes take to complete. What I mean is...her feet and hands are chilled, I wouldn't say cold, but there is no bluing yet. How long from stage to stage? I know it's different with everyone, but there has got to be a ball park.
She's gotten much much worse in the last day. She is on halodol, morphine and something for nausea. She has very labored breathing. Maybe 7 respirations a minute? I dunno. The decline has been remarkable, imo. I had no idea cancer could sap the life out of you so fast.
Tonight she could hardly sip her water and take her pills. I"m not sure what it going to happen next. We have to talk to the nurse about it I guess. She is full of fluid (peeing still, maybe once a day) but intake is very little..and virtually no food...just a bite today. Literally a bite.
I guess I'm really just venting. This all happened so fast and unexpectedly. It's so hard for me to look at my mom..and see the slits for eyes, the blisters from fluid in her eyes. I know she is likely in no pain, and it means a great deal to her to be at home...but it's mentally very very taxing on me. I'm trying to enjoy this last time, but I find myself breaking down too much. I feel selfish for breaking down (not in front of her) but when she's sleeping. Last night, when she was sick in the stomach I couldn't take it. She was so sick, didn't know what to do (didn't have the emergency kit from the hospice yet) I felt so helpless.
OMG this is horrible. Thank this board so much! thanks for letting me vent.
Update: well so far so good. Mom is still fighting. We've been told twice to get ready that she only had a few hours left. Her feet and hands were blue, mottling everywhere, but she pulled thru! The hospice people are done with giving us time frames...lol. They are surprised she lasted this long and is in this good of shape (relative to how she was when she came home)
Monday we had her out for a drive and took her for a hamburger then sat over by the pond for an hour or so. She's not super alert, she fades in and out, but it's much better than she was. Sometimes she still has bad nights with terrible hallucinations, but we've made some adjustments in medication and in her tv viewing that seems to have put a dent in that.
We've decided she is in this for the long haul. I"m quite certain I'm in total denial and will be a wreck when she goes, but...oh well, I'll deal with that when it happens. I've decided I'm going to enjoy her life, not wait for her death.
We just take our time with her and let her and let her do what she wants. Yesterday we were wheeling her around the house so she could dust...lol. she does try to walk every now and then, and we just help her a lot and take a few steps then rest. What a journey it's been. thanks all.
We brought mom home on sunday for home hospice care. Here is a little background; Mom has COPD for many years now. She stopped smoking 3 years ago, same time she went on O2. Before that she'd had lung scans about once a year. There was a spot, but it didn't change shape, size, anything in many years...so I guess the doc stopped them.
About two months ago, her breathing got a bit worse...I was just getting over a terrible respiratory infection, so we all figured she got it. We noticed she was using her inhaler a lot..and finally went to get it checked out. Chest X ray showed nothing...so doc gave her antibiotics and thought it was a cold.
She kept getting worse...doc checked her in the hospital about a week ago. Did a CAT scan, then discharged her to go to her Pulmunologist appt on Wednesday (previously scheduled, she saw him about twice a year) The CAT scan showed a large mass against her lung. The doc wanted to take a biopsy, PET scan and go from there. He mentioned cancer, but wanted to be sure.
So we get home...horrible ride for mom. PET scan was scheduled for Friday. Thursday she was having a horrible time breathing so we took her to the ER of the hospital she was having the PET scan at. She was admitted. The doc decided to do a biopsy first, then we would schedule a PET scan.
SO (sorry I'm getting long winded) she's in the hospital and getting worse every day. She refused a second CAT scan of her body to see where else the tumors were. She was afraid she wouldn't be able to breathe in the ring. (she can hardly breath when laying flat) So the doc talked to us about it and he gave her the news that he is 99% sure it's SCLC (biopsy actually came back today, but we didn't call)
Ok, so she gets discharged to home hospice on sunday....and here I am. The hospice people are wonderful! but I do have some questions about the end.
How long to the changes take to complete. What I mean is...her feet and hands are chilled, I wouldn't say cold, but there is no bluing yet. How long from stage to stage? I know it's different with everyone, but there has got to be a ball park.
She's gotten much much worse in the last day. She is on halodol, morphine and something for nausea. She has very labored breathing. Maybe 7 respirations a minute? I dunno. The decline has been remarkable, imo. I had no idea cancer could sap the life out of you so fast.
Tonight she could hardly sip her water and take her pills. I"m not sure what it going to happen next. We have to talk to the nurse about it I guess. She is full of fluid (peeing still, maybe once a day) but intake is very little..and virtually no food...just a bite today. Literally a bite.
I guess I'm really just venting. This all happened so fast and unexpectedly. It's so hard for me to look at my mom..and see the slits for eyes, the blisters from fluid in her eyes. I know she is likely in no pain, and it means a great deal to her to be at home...but it's mentally very very taxing on me. I'm trying to enjoy this last time, but I find myself breaking down too much. I feel selfish for breaking down (not in front of her) but when she's sleeping. Last night, when she was sick in the stomach I couldn't take it. She was so sick, didn't know what to do (didn't have the emergency kit from the hospice yet) I felt so helpless.
OMG this is horrible. Thank this board so much! thanks for letting me vent.
Update: well so far so good. Mom is still fighting. We've been told twice to get ready that she only had a few hours left. Her feet and hands were blue, mottling everywhere, but she pulled thru! The hospice people are done with giving us time frames...lol. They are surprised she lasted this long and is in this good of shape (relative to how she was when she came home)
Monday we had her out for a drive and took her for a hamburger then sat over by the pond for an hour or so. She's not super alert, she fades in and out, but it's much better than she was. Sometimes she still has bad nights with terrible hallucinations, but we've made some adjustments in medication and in her tv viewing that seems to have put a dent in that.
We've decided she is in this for the long haul. I"m quite certain I'm in total denial and will be a wreck when she goes, but...oh well, I'll deal with that when it happens. I've decided I'm going to enjoy her life, not wait for her death.
We just take our time with her and let her and let her do what she wants. Yesterday we were wheeling her around the house so she could dust...lol. she does try to walk every now and then, and we just help her a lot and take a few steps then rest. What a journey it's been. thanks all.

