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Old 04-14-2008, 07:41 PM   #1
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Gonna lose mom soon-Update

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.

Last edited by Kiasmama; 05-28-2008 at 02:28 PM.

 
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Old 04-14-2008, 08:50 PM   #2
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Re: Gonna lose mom soon

I am so sorry to hear of your mother's illness. Just went through this with MIL. As she stops eating and drinking, we would give her small ice chips..she liked that. pretty soon she couldn't swallow a pill for pain, so we would dissolve them in water in a spoon. then hospice gave her liquid and then a patch. The meds very strong. I think half of her spiral was the strong meds. (morphine)........so probably 2 weeks of that and she was gone.
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Old 04-14-2008, 09:01 PM   #3
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Re: Gonna lose mom soon

Kiasmamma

I am so sorry about your Mom being so ill with cancer. My thoughts and prayers are with you and her.

Hugs Nadine

Last edited by music47; 04-14-2008 at 09:03 PM. Reason: Mispelling

 
Old 04-14-2008, 11:08 PM   #4
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Re: Gonna lose mom soon

I went through the same thing that you are going through with your mother. My mother was diagnosed with Stage IV Lung Cancer in 9/06 and had passed away on 7/28/2007. My mother was in and out of the hospital the whole 10 months. She really didn't have a hard time breathing except when she had pnuemonia in the beginning. She had blood clots in her legs and lungs too in the beginning. Then she had a massive stroke in May 2007. I know where you are coming from. I had to watch my mother, my best friend die in front of me. It is very sad seeing the person you love so much pass away right in front of you. I have to go now. Lori

 
Old 04-15-2008, 07:05 AM   #5
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Re: Gonna lose mom soon

thanks everyone. it's a hard journey but I know I'll learn something from it and just being able to comfort mom is a big deal. I had a great sleep last night...for the first time in about seven days. it did a world of good I feel.

moms resting good now. her hands and feet are getting very cold. no color change yet. at least she is peaceful.

thanks again everyone.

 
Old 04-15-2008, 07:13 AM   #6
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Re: Gonna lose mom soon

that's good!! My MIL did not have pain until the end, we immediately had hospice come and start the meds. she never suffered at all. she went peacefully in her sleep. She didn't speak or communicate much the last week. Just lay there and stare...eyes were always open. couldn't tell if she was sleeping or what. That was the meds.........
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Old 04-16-2008, 02:43 AM   #7
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Re: Gonna lose mom soon

Hello KM,

You are doing the best that you can with an extremely difficult situation.

Do not feel selfish for breaking down; it is a testament to how much she means to you.

My prayers are with both of you.

Take care.

Sincerely,

Phoenix

Last edited by Phoenix; 04-16-2008 at 02:43 AM.

 
Old 04-16-2008, 08:41 PM   #8
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Re: Gonna lose mom soon

thanks again all... we got mom some new meds today-some stronger morphine and some pheno. She seems much more at peace than the last few days. I'ts horrible to watch, imo. I know it means a lot to her and that keeps me going. She is starting to "actively die". her feet are turning bluish and her breathing has gotten very shallow. I'm hoping she finds peace soon.

thanks again.

 
Old 04-16-2008, 09:24 PM   #9
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Re: Gonna lose mom soon

I understand what you are going through
I went thru this 2 years ago with my mom and my brother so my thoughts and prayers are with you just hold on to what you got while she is still here hold her, love her, talk to her, and tell her its ok to let go that there is a more peaceful place on the other side there will be no more pain, just make sure you tell her often that you love her and when all this is over and done pat yurself on the back for being a beautiful daughter being with her in her last days of live I wish you well. God Bless
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Old 04-17-2008, 07:45 PM   #10
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Re: Gonna lose mom soon

Kiasmama,
I havent posted to you before, but recognize your name from the Depression Board.....I saw your post here and wanted to offer my thoughts and prayers for you at this time. I have been in your place with my husbands grandmother and my uncle...and it was extremely difficult. I cannot imagine going through this with my mother. Try to get through these last days remembering that each painful moment will become a memory you are glad you have as you will know you were there to comfort her, and she knew she was loved.

So very sorry for your situation....

Carsam

 
Old 04-18-2008, 11:42 AM   #11
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Re: Gonna lose mom soon

I have to give everyone an update...you are all so kind. Yesterday was a very bizarre day. The hospice nurse came on wednesday and said my mom was actively dying. her hands and feet were cold, her toes were blue, she was mottled in the legs and arms, her breathing was shallow, she was hallucinating...we all thought she was going to go that night.

she slept the entire night...thursday got up around 8 am, had a fudgesicle for breakfast. then as the day went on she just got more and more alert. her hands were the warmest they'd been in weeks and her feet were even warm. she was lucid and joking all day. we watched tv shows....she commented on everything...frankly..she didn't shut up :-) she had some zucinni bread, some lasagna, some strawberry pie, and a few other things...

it was an incredible day. she kept saying "I can't believe I"m doing this, because yesterday I didn't have the breath to talk" It was really a bizarre day. Like being in the twilight zone! She said she felt better than she did in weeks. Her breathing wasn't as bad...it was just unexplainable. My brother and SIL have been staying the week...we take shifts with her. And last night we were all joking and laughing....mom was quite the comedian. Moreso than in years.

We cherished every moment and honestly we felt sure she was going to pass last night. We figured that was the last hurrah that God was giving us.

today she is tired, but waking up a bit more now. She is doing her eyebrows, wants her hair cut and is yelling at my dad to dust the living room. Very bizarre.

I've read thru these boards and didn't really see anything about going from actively dying to almost baking a cake :-) I"m not hoping for another day like yesterday. If it happens...it happens. I honestly feel like I can let her go now (unless of course God wants to work a miracle) I'll be sad, but it's not at all the picture I had a few days ago. That time was so special.

I'm interested if anyone else has had something like this happen?
thanks for all the replies and wishes.... what an interesting thing life is...

Last edited by Kiasmama; 04-18-2008 at 11:46 AM.

 
Old 04-18-2008, 12:20 PM   #12
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Re: Gonna lose mom soon

Hello Kia,

There are two things that I have learned not to underestimate;


1) The power of genuine prayer.

2) The power of positive thinking.

Take care.

Sincerely & Respectfully,

Phoenix1

 
Old 04-19-2008, 08:05 PM   #13
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Re: Gonna lose mom soon

Kiasmama....if I didn't know better I would have thought I had written your last post!!! I haven't been on the boards lately because I have just gotten back into life again. You see, my mom was dx with SCLC in December, 2006.
And like your mom, has literally come back to life. My mom recently was taken off hospice for a day to get a new CT scan as she hasn't had one for
a year. Doctors said her tumor was now 1/3 original size and all the mets to bones, liver, kidney, adrenal glands, etc. are all gone. He said it was medically unexplainable and she should have been dead by now. In other words, my Mom has been blessed with a MIRACLE. Even though she still has the small tumor in her lung, right now she is doing fantastic. However, over the past 16 months there were several times they thought she was going to die. Sounds like the same story as your mom.

Like Phoenix said, never under estimate the Power of Prayer. I know this is going to sound bizzarre to everyone, but when you have prepared for someone to die and they have a miracle....it brings on a lot of crazy emotions. I was completely dumbfounded at first even though I have a very strong faith. It is so hard to even explain unless you have been through it.
Kiasmama, maybe you can understand what I am trying to say.

At any rate, I truly wish your mother good health and she recovers as my
mother has. My thoughts and prayers are with you both.

 
Old 04-20-2008, 07:48 AM   #14
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Re: Gonna lose mom soon

Quote:
Originally Posted by SherryAnne View Post
Kiasmama....if I didn't know better I would have thought I had written your last post!!! I haven't been on the boards lately because I have just gotten back into life again. You see, my mom was dx with SCLC in December, 2006.
And like your mom, has literally come back to life. My mom recently was taken off hospice for a day to get a new CT scan as she hasn't had one for
a year. Doctors said her tumor was now 1/3 original size and all the mets to bones, liver, kidney, adrenal glands, etc. are all gone. He said it was medically unexplainable and she should have been dead by now. In other words, my Mom has been blessed with a MIRACLE. Even though she still has the small tumor in her lung, right now she is doing fantastic. However, over the past 16 months there were several times they thought she was going to die. Sounds like the same story as your mom.

Like Phoenix said, never under estimate the Power of Prayer. I know this is going to sound bizzarre to everyone, but when you have prepared for someone to die and they have a miracle....it brings on a lot of crazy emotions. I was completely dumbfounded at first even though I have a very strong faith. It is so hard to even explain unless you have been through it.
Kiasmama, maybe you can understand what I am trying to say.

At any rate, I truly wish your mother good health and she recovers as my
mother has. My thoughts and prayers are with you both.
this is really bizarre. she was up yesterday in the wheelchair and out on the porch. Today she is up and wanted to be in the kitchen, so we got her in the wheel chair and she's sitting here making a list and giving orders and such. I am at a loss.

I think I will make a call to the doc, cause mom refused the PET and CAT scan (fear of not being able to breath laying flat) so we really don't know if it mets anywhere. the doc assumed it had because of her increasing confusion, but now I think it was just the mix of the drugs. The atropine seems to be doing it (from what we can tell) so we'll keep a closer watch on it today.

She isn't eating, but that's actually not to abnormal. She always did get her appetite in the evenings and thats' been happening.

Her feet are literally hot last night and today. She had mottling and that's pretty much gone. Her eyes are very watery and she is coughing up mucus, but being able to cough is an improvement.

She still gets extremely out of breath when she moves, but she

doens't panic about it like she used to...probably because of the phebobarbitol making her a little less anxious. I really don't know what to think. I'm enjoying the time. I consider it a gift. It's just confusing is all.

thanks to everyone for their responses. its' really interesting to hear your stories.

 
Old 04-21-2008, 09:16 AM   #15
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Re: Gonna lose mom soon

Wow, this is truly incredible. This is my first post on this thread, but I have been "lurking." I expected to get back on here today and hear the worst. Instead, to see that you have been given a precious gift... WOW. Your mother was obviously not ready to go anywhere!!! That is wonderful!!

When I went through this with my mother, she was "actively dying" according to Hospice (they gave my sisters and I some literature that explains the dying process in detail). Sadly, she went through the entire process, because she was just too far gone with cancer..:-(

Perhaps this was like a "trial run" to prepare you for when the time DOES come. For now, you have the wonderful opportunity to have more precious time to talk with her, hug her, spoil her, and show her how much you love her. You are truly blessed. Enjoy!!

 
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