New Diagnosis - my Mom **She's passed!!!

Tera · Senior User Joined: 31 Dec 2007 Posts: 279

Your mom sounds like my mom was, a fighter and quite a lady. They set wonderful examples for their daughters, don't they?!

The falls, I know those are scary. I'm glad you have assisted living for your mom. I moved in with my mom after her diagnosis, leaving my husband to be a bachelor but we were only 1 1/2 miles up the road. One morning, early, I got up to go to the bathroom and there was mom on thre floor beside her bed, sitting with her legs stretched out. She said when she got up she just slid down, couldn't stand. I felt so bad because I have a hearing disability, sleep with my hearing aids off, and she was banging a flashlight on the floor to wake me and I didn't hear it. She was on the floor for over an hour. I tried to get her up but because she couldn't help, I couldn't do it. Called hubby, he couldn't get her up either so I sat behind her to prop her up more comfortably and we wound up calling rescue.

From that day on, I slept in a recliner with my hearing aids ON so I'd hear her if she needed help. And got up multiple times to check on her. I was so afraid of another fall.

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 352

Ditto

Try to not to feel guilty about your loved ones falling, all Daniels falls, accept one, were when he was in the hospital.
I used to complain to the hospital, that every time I went out for a coffee he was up and he would fall...At first I was angry with the hospital and asked why they couldn't look after him for half hour!
It was always when we were not looking...
I think Daniel used to think, I'm off to the toilet, she isn't here...(You would be amazed how quite they are when they try going for there romp) The time he cut his eye was when I was painting the outside of the house and my mother-in-law was in the same room...he took advantage, he wanted to go upstairs to his bed and pushed past her. It is something he never would do, but he was very confused and he fell, cracked his head and eye, I was so upset and crying and then he was all sad because he saw me crying.... With this disease, it brings confusion and/or weakness and we are only human...I have only just realised recently that so many people fall out of bed or whilst trying to walk and I blamed myself for taking coffee...So don't feel alone with this guilt, we all do, but we cant be there all the time. God Bless Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

LizNDale

Wow, Tera and Koik, that helps, that really does.

When she fell the other night and I was right with her, right behind her, grabbing her as she went down, but I was absolutely useless.

One of the changes in my mom since her diagnosis is a tendancy towards laughing fits, but it's not a good laugh, it's an almost hysteria-type-thing. Anything will set her off, but especially when you're both working towards something (like trying to get her up, helping her on the toilet) and aren't getting anywhere. I doubt she is really finding any humor in the situation, I think it's other emotions all together plus a physical reaction.

Unfortunately, it makes her bladder problem worse, she starts to "go" and that makes her laugh even harder, making her more helpless, making her pee more....becomes a vicious circle! I'm not sure if this is a reaction to her stress or an effect of the mets.

All of this combines to making me afraid to help her on my own, and so it seems like most of the guilt I am feeling right now is not so much from her falling but from my growing fear of not being able to stop her falling, leading to a growing reluctance to do things.. for example, we were going to go to my husbands and my cabin for this weekend, but it would just be her and me - and she is so weak - I am not confident in my ability to handle it.

So instead she wants me to take her to church on Sunday, and I am scared to death. It will probably be fine, I'll have help from the assisted living folks with transfering her to her car from and I know I can get help from the folks at Church transfering her out, but still I am so anxious about it. I'm assuming she'll need to use the restroom at some point - I'm making myself sick worrying about it, and it will probably all work out fine!
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 352

Hey Liz
Do you mind me saying...If you don't know what to do...do nothing!
Put the telly on and call the church to home....
You are burning yourself out!

If you fall ill, who has your mum got?
You have to be No1 importance here and you must remember that..
I know how you feel, I have been where you are now..
Remember one of my post said I drive to hospital in tears and then back home, its not the same but the mental exhaustion is!
I remember Pbj sent me a nice post and after that I started to calm down and realized I had to look after myself first so I could see to his needs...

I was terrified also of having to look after my husband on my own, Daniel was bedridden.....
Can you get a hospital bed.....and one of those walkers and the seat with a toilet? This would help tremendously!

Your mum is going to have accidents, but you are human and its impossible to manage everything, every minute...slow up! What is first priority..Your mum is clean, comfortable, fed and has pain control and feels secure and loved..I think you are doing that, so what about you! You need the same, but more because you are doing for two!

Its a wonderful idea to have some time out, but if you are on your own, how can you expect yourself to do all this?
You could always call up a Chinese takeaway and a good video
Please think about this....Phone the priest and ask him to visit....you will find he will also speak to you separately to see how you are coping..
I will be thinking of you and my prayers will continue....
Hugs and God Bless...Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

LizNDale

Thanks Koik, you are so right in so many ways.

I'm going over to mom's after work, her physical therapist is going to teach me how to transfer her from the wheelchair to the car. She thinks it'll be better with my Sebring than Mom's Honda CRV.

My local brother will also try to be there - this Sunday is a special sunday, it's the last service for her minister, as he is leaving, and it is very important to mom. I want to do what I can to make sure she can go. My local brother sings at his church, but he is thinking about skipping his, and helping me with mom. I REALLY want to do this for her.

I will take care of myself, and my husband will help take care of me too. I have many friends who love me, I just have to remember to ask them for help.

I hope I didn't give the impression that I am taking care of my mom all on my own - my local brother is taking this on as well, and in fact more than I, since I was away at the cabin for 2 weeks! In fact, I told him today that I am worried about him, he needs to get away. We try to take turns. And he and his wife willgo on vacation the last 2 weeks in August, that is when I'll feel the pressure. But I will ask for help!

Koik, what did you mean by walker with a seat with a toilet? She has a walker that has a seat, but it doesn't have a toilet. Do they have such things? We are also pricing out hospital beds, and she is having a needs evaluation today so we can get her qualified for various medicare benefits.

And finally, thank you dear Koik - you are in my thoughts and in my prayers too, both you and your wonderful husband.

Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 352

Hello again..
Its probably me thinking you were alone, not your mistake.... Embarassed

its so easy to forget things nowadays...I get fibro fog, goes hand in hand with my fibromyalgia + I am tired.. Exclamation

Great knowing you have lots of friends you can call on...and a wonderful husband.

The hospital bed is really great, I wouldn't know how to manage without it..
My husband never had a walker but I have been told they are great...There are also lifts to help carry someone from the bed!
He does have one of these chairs by his bed so he can go to the toilet. They really are a blessing because he always had a bowel problem because of the morphine.
There is also a bath chair. I think that is very good, I have used that with Daniel..So many helpful contraptions nowadays and if you are able to get help with it, great because you sure will need them..

I will think of you going off to church and hope the day shines for you all.
You take care now..I will be thinking of you and I will be praying for you.
God Bless, Hugs, Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

LizNDale

We got her to Church and back, but she was really, really out of it yesterday. My brother and sister in law came also, and between the 3 of us we got her transfered all 3 times without hurting her or us. She kept dozing during church, and she looked so pitiful that after the service at least one person reminded her of who he was, even though she knew perfectly well. But it was so worth it - on the way there she didn't initiate conversation at all, except at one point to say "This is the nicest thing you kids have done for me."

This close to chemo, (in 4 days - Thursday), shouldn't she be on an upswing? She is getting weaker and weaker every day, yesterday was the worst I have ever seen her. She couldn't stay awake, her speech was slightly slurred like her tongue was thick, the communication between her brain and her left side is essentially gone now, she continually slumps over to her left, her arm dangling down the wheel chair, whether she's doing nothing or eating or whatever. She is not aware that she is off-kilter. We reposition her but 30 seconds later it's the same. Last week she was able to get her left foot and arm to cooperate somewhat if she looked at them while trying to get them to work, but no longer. She is basically unable to assist during transfers from wheel chair to toilet or bed or vehicle. She frequently has no concept of time or day - she has started to call my work # instead of my cell #, she did that Friday night and then again last night, which I realized this morning when I got to work and checked my messages. I've asked the aids to re-orient her to the day and time whenever she gets up from a nap, because that is when it is the worst. Heck, we all get befuddled sometimes when we take a nap in the middle of the day, I can't imagine what it's like for her!! She often doesn't finish sentences, or repeats the first few words a few times, and then fades away.

Assuming her bloodwork is fine on Thursday, she will have her third chemo, as that is her wish. It is getting harder and harder for us to see her go through this, my brother is beside himself hoping she changes her mind, but I know she won't. He keeps bouncing back and forth between acceptance and fear, and frankly so do I, but I think I have a better acceptance of it then he, probably because of what you all have told me about the importance of listening to the patient, the one actually fighting this killer.

I want to buy a used conversion van with wheelchair lift we found on craigslist, that will make it so much easier and safer on everyone for transport. As out of it as she is, she wants to still do things. At what point do we interfere and tell her it's better for her to stay home and rest? If I were her, I wouldn't want to stay home and rest either. I'd want to get in all the living I could. But isn't there a point where for safety and health you deny her wish? Isn't there a point where her judgement may be compromised?

Please help me, is it possible that all I've described above is from the chemo? If so, since she's only half way through, won't it get worse before it gets better? Although I can't imagine what that would look like - I suppose constant sleep!

Thanks Koik for the info, you aren't kidding, there's a lot out there for people! I had no idea! I googled to see what is out there, and was amazed. I've gotten some good ideas that I am looking into. I hope you are well...

Thanks all,
Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2367

Hi Liz,

Wow -- just read through your post. The chemo does seem to be hitting your Mom pretty hard, doesn't it? I guess I'd have the same reactions about what future chemo's will bring. I'm sorry this is turning into the proverbial roller coaster ride. Yuck. Does the doctor know about all of the falling, etc? What is he/she saying about all of this?

I'm so glad she was able to get to church yesterday. I know you mentioned that was important for her.

Hang tough and keep us updated.

Big hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

LizNDale

Hi PBJ!

Her oncololgost knows about the falls - he thinks it's a combo of the steroid weakening her thighs, the mets causing her basic issue with ther left side, and the chemo making everything worse.

She has round 3 tomorrow. My brother is REALLY having issues with this. He actually asked the Drs office "What criteria do you use to go ahead with Chemo? If the bloods tests are good and the body is warm?" Luckily they are vey understanding and didn't hang up on him.

She is now on 2 aid assist, as she can't help out at all at getting up or standing, she can shuffle her feet if you talk her through it but only to a very small degree. We pretty much just have to toss her around, so to speak. When that happens she exclaims "woo!". I told her it's better than rides at an amusement park!

She's on antibiotic again for bladder infection, and I hope they will be prepared to help me get her to and from the bathroom tomorrow. She'll needs to go often.

We bought the conversion van with electric wheel chair lift on Craigslist.com, we bought it yesterday. That is going to make traveling SO MUCH EASIER for her. I was really dreading getting her to and from chemo, just logistically speaking. It's not much to look at, it's a 1987 Ford van, but has only 44000 miles on it. The seller's wife had polio, and they used it pretty much to get to church and back, and to Dr's appointments etc.

Now if my mom feels up to it, and her friends want to take her out to lunch or whatever, they can do so quite easily. I cannot believe how much less stressed I feel now that we have this.

Mom and I have had this things for years, where I say "I love my mama" and she says "Your mama loves you". She hasn't missed it once, not even on Sunday when she was so out of it.

I just talked to her, the aid answered the phone for her. She says they are now having to use a lift or hoist to get her out of bed. It is to the point that I can't imagine how they are going to do this tomorrow.
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

LizNDale

Well, dale and I are are about to leave to get mom and take her to Chemo. her Dr is on vacation, we will be seeing a nurse practioner first for an assessment to see see if she can tolerate the chemo. I frankly do not see how she can.

Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

ksplat · Posted: Thu Aug 07, 2008 6:53 am Post subject: Re: New Diagnosis - my Mom

Hello Liz

Just wanted to say hello & tell you how sorry I am about your Dear Mother's deteriroation. I have been watching & reading yr updates but this is my first time to let you know I keep your Mother in my prayers daily & will continue to do so.

Thinking of you too my Dear. Please keep strong & take care of yourself.

Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 352

Hi Liz
Great to hear you got to the church, its memories like that we cherish, even if she was dozing through it...

Its so really sad to hear the problems your mum is having with her chemo.. Crying or Very sad

It looks as though its going to be too much for her to tolerate...
I would like you to know that I haven't forgotten you or your mum..
We all await to hear the update from you regarding the nurse practitioner as to what happened today....

God Bless...Koik (you remain in my prayers)
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

partlysunny · Regular Joined: 06 Aug 2008 Posts: 17 Location: US

Hi Liz,
I know how much that trip to church meant to your mom. My mother is a devout Catholic, and not having the strength to go to church really bothers her. I've arranged for her parish priest to stop by with communion when she's having a good day. She seems to rest more comfortably after his visits.
Including you and your mom in my prayers.
_________________
Cindy
***********************************
My beautiful Mom
Diagnosed July 8, 2008 Stage IV NSCLC
Died peacefully September 2, 2008

LizNDale

Angie, Koik, and PartlySunny -

Thank you all so much...

Well, No Chemo. They would not let her have it today, they want a CT Scan of her brain - she (nurse-practitioner) referred to her left side as paralysis, not just weakness. The oncologist's notes from a week ago today referred to "mild" weakness on ther left side. The downhill progression this week and last has been unbelievable. She recommends Hospice. We just saw the nurse a here at assisted living, and they agree, no longer believing mom to be completely safe here. The onsite hospice, The Gathering, a 4 room suite with 24 hour RN is full right now, but they anticipate an opening in the next 48 hours. So we family members will take turns making sure someone is always here with her until one of the rooms opens up. We won't have to do any of the transfering, we'll still call for the aids to do that, 24 hours a day.

Mom is very disappointed, and sad, though still in over all good spirits believe it or not. She cried quite a bit, it was a very emotional experience at the chemo center today.

I am so very, very tired. So sad for this grand lady. But let's hope she get's some of her strength back, now that she's getting a break from the chemo.

We're leaving again soon for the scan and appointment with radiologist (which she had today anyway, 4 week follow-up after radiation). the thought is that 1 or more of the tumors (10 of them, we finally got a #) have grown, or caused more swelling, shifting that middle line over. So we'll see what the scan says. And what Dr Vic says.

Take care, thanks,

Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

LizNDale

Better news this afternoon!

Her radiology oncologist says the left side issues are due to swelling in her brain from the radiation, particularily around the tumor in her right frontal lobe.

He says she should get back 30 to 50% of her strength back! He's put her back on decadron, she had 40 mg in prep for her chemo, we gave her another 24 mg now, and she'll have 16 mg/day.

Hopefully by the time there is room for her in The Gathering she won't need it!

Thank you all for your prayers.

Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

	Cancer Forums Forum Index -> Lung Cancer Forum	All times are GMT - 5 Hours Goto page Previous 1, 2, 3, 4, 5, 6, 7, 8, 9 Next
Page 5 of 9

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others