Some questions about Dad's symptoms, getting a little worrie

LindaS · New User Joined: 12 Jul 2008 Posts: 7 Location: Ohio

My Dad has NSCLC stage IV, had met to spine also empysema. He was diagnosed May 5,2008. He also had a heart attack the day after they did a biopsy on the spine. He opted for only radiation on spine to ease pain of compression .
The doctors told us to check out hospice. Dad was basicly feeling ok, just weak. Really no bad lung symptoms, just occasional shortness of breath. Toward the end of June, It seemed he was experiencen shortness of breath more frequently, and still having pain in his back, though not as bad as before radiation. We decided to go ahead and sign up for Hospice because they could help with the pain meds and stuff for him.

The past couple of weeks he seems to be more and more confused. He'll take a nap for an hour and when he wakes up he thinks he's slept through the night. He talks alot to himself now. His concentration and memory is also worse. His legs are weaker and here in the last few days sometimes he feels a little off balance when he walks to the bathroom or into the kitchen.
He's on morphine and he takes an occasional percocet for pain. He also takes an anxiety pill twice a day. The amounts he takes hasn't changed since he started.
I can give his medicine to him and a min later he asks if he has any pills to take and I tell him he just took them. He dosent remember taking them. I keep a daily sheet with the medicines and write down when he takes what and when I tell him that I wrote it down right after he took them he'll then believe me.

Could this confusion just be from the meds?
I'm worried that maybe he might have something in the brain.

It just breaks my heart to see Dad like this. He's always been strong, independent. I am his only child. I've basiclly moved in with him .
I have hospice 3 times a week , but I'm really just by myself and sometimes it feels to much for me. Dad's here at home, but I keep thinking if things get worse, I won't be able to do this by meself.
I feel guilty at times.

Sorry for all the rambling. I think I just needed to sit down and express the things running through my mind. I'm glad I found this forum with people that can understand these feelings.

Linda

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 334

Hello Linda
Wow....

First Welcome on board the roller coaster..

There is nothing worse than struggling through this on your own.
Do they not have a system that a nurse comes twice a day and palliative care sends in some day helpers?

(I have a nurse morning and evening and doctor pass automatically at least 2 times per week) Also a cleaner for 3 hours a week but I can use that time to wash/change my husband, but I don't, I prefer do do him myself and I let her manage some ironing or floor cleaning. This is set up from the palliative care team.
Even by a nurse passing it helps to be given confidence that all is well. Perhaps as your dad gets further down the road there would be some extra help for you?
Forgetfulness/dizziness all these symptoms can be a number of things...Yes it could be the morphine and yes it could be the brain.....the only way forward to finding this out is to call the medical team and get them to examine him.

You are obviously a loving daughter to be with your dad, giving him the meds, moving in with him. I can imagine the stress and fear that you are and will go through.
I hope you are able to eat well as you are going to need strength mentally and physically....It is perfectly normal to think you wont be able to do it if it gets worse, I was terrified of going forward but you will be surprised how your body works in robot mode.

Try not to worry for tomorrow as you know tomorrow may never come.

Take small step at a time and stop frequently to compose your self. Have that time for coffee and when you don't know what to do, do Nothing! Its going to be hard but your love for your dad will get you long way, believe me.
You don't have to feel guilty, you and he knows your love for each other and as long as you do your level best you cannot do no more. The decision you make would be the best decision at that time, but that for now you can rest on the back bench, because today you are there with him so profit the time you have with each other and try to smile Wink

I am praying for you and sending you a bear hug. God Bless, Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

dano

Welcome Linda;
Sorry to hear what your father is going through. Hope things get better you both.
I find that Doctors walk through their ABC's of Cancer pretty well but have a hard time thinking out of the box, when you are a non-smoker and have non-cancer family history, then you can't have cancer. Wrong. And if the stats say only about 10% of cancer patients have problems with blood clots the obviously very few people would have them, and no need to look, until a problem shows, by then it would have been good to know before the problem. I think blood clots are a lot more common than 10-20% in lung cancer patients. I had MRI's, CT's and the Pet scan and no one picked up on the Blood clots. Not until I brought up swelling in my left leg, and at first they discounted that as a product of chemo, I had to take a stand and they did a Ultra sound and found a DVT (blood clot). From there I went to the Hospital they took another CT this time looking for clots and found plenty in my lungs. They put on Lovenox, a blood thinner you inject. It took a lot of use of that to help my leg, but it took very little time to help my coughing and breathing. So my thinking, if breathing is a problem, check for clots in the lungs, they may discount this if it doesn't meet their ADC thought process. Good luck with all of this, I'll be praying for you.
God Bless
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1405

Linda,

I'm sorry to hear that your Dad is declining. As other's have pointed out, it could be a multitude of reasons. My initial thoughts were that he may be dehydrated, low on electrolytes. How is his fluid intake? Is he getting enough gatorade, orange juice, and bananas? These all contain either electrolytes or potassium. Things can get pretty screwy physically and mentally if these counts are low.

The second thing that came to mind is oxygen. Have the hospice workers been monitoring his blood oxygen levels? Oxygen deprivation does have an effect on brain and organ function.

Sadly, if also can simply be the progression of the disease. I'm afraid there is no way around this hurdle. It will happen as time goes by. I'm sorry.

You hang in there and don't hesitate to come here to vent or ask questions. Plain and simple -- this is scary stuff. We aren't professionals and yet we're placed in a position of care for something that is way over our heads. Koik is right -- somehow you manage to get through it, but I do understand your feelings of being overwhelmed. If things get to a crisis point, call an ambulance to get help from the hospital. When you approach this from a point of love for the person, you'll never go wrong.

Don't feel guilty -- all of us go through a lot of differing emotions -- sometimes all in one day -- when it comes to taking care of a loved one on the decline. You are a very dear daughter and a wonderful caregiver. Remember -- your Dad is lucky to have you and I can see how very much you love him through your posts.

Take care.

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

LindaS · New User Joined: 12 Jul 2008 Posts: 7 Location: Ohio

Thank you all for your words. I think I just get kinda down feeling once in awhile, and you guys are so wonderful to just let me let out some of my feelings. Thank you again.
This afternoon Dad is feeling better. He ate some dinner and seems to be more clear headed right now. I do worry about his progressive weakness, but I know it does have to do with his cancer. I make sure he always has fresh water at hand. Also he drinks cranberry juice. He eats alot of fresh fruits, so I'm always going to the store so I can keep them on hand.
I'll just keep going day by day.
Linda

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