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Miami Janet

Mom is in bed so much

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Can anyone give me an idea of what to do for my Mom. She has NSCLC stage 4 and is on a clinical trial of perifisone right now. The past few weeks she has gone from being independentat home and walking to being completely dependent and in a wheelchair. She does not want to leave bed at all or eat or drink. We can persuade to eat and drink a little but she will only sit in the chair max 1 hour a day and every day seems to go downhill. I dont know if this means the end is near and we should have hospice come in or it is depression????The doctor says she is doing great but he doesnt understand how she has declined..she puts on a different face at his office.Can anyone give me there experience towards the end?(she is on antidepressents but only about 1 month so far..maybe they havent kicked in) [/img]

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Janet,

I'm so sorry that your Mom isn't doing so well. Do you know if she is physically unwell, or could this be a byproduct of depression? Either way, keeping the doctors informed is very important.

I'll keep you all in my prayers. I hope she will grow stronger this week.

:) Kelly

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Janet.. I am not a caregiver and have no experience with end of life issues. But, my thought is that your mom may have untreated depresssion. I took antidepressants and it helped me as it has many others.

Don M

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I would definately get your Mom checked for depression. My Dad has been extremely depressed since he was dx last October. He just kept going down hill. Doctor really can't figure it out either but now he is too weak for anymore treatment. I think it is a combination of chemo treatments (he has been on 3 different kinds) and depression. I hope you can get some help for your Mom I know how hard it is to watch a parent suffer like this.

Denise

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Is your mom presently under chemo or radiation treatment? It is normal while under treatment, and even in between, to be very fatigued. It is important to be sure she gets enough liquids each day and nourishment so she does not get dehydrated and gets enough calories.

My wife is Stage IV and she is a three-year survivor, so don't give up yet. We have found that getting the patient to eat snacks every 2-3 hours is better than the normal three full meals. You can get more down them, and it helps lower the nausea. Try Ensure, Breeze, Smoothies, ice cream, shakes, Frosties, etc.

Best to you. Don

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Hi,

My mom just got weaker as each day went by. After she was unable to walk, it was only a matter of 2 weeks before she passed. The cancer made her so weak and she just lost the will to live. She quit eating and drinking about a week or so before, but she went peacefully. I don't know how old your mom is, my mom was 76, the age may have something to do with it also. My mom never had any treatment, it was just too late, but she wouldn't have tolerated it anyway. It was much more peaceful for her... :?

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I'm sorry you guys are struggling so. I guess my 2 cents would be to go ahead and treat it as depression first. it can't hurt and there are so many medications out there. then, if things don't improve, you will have at least investigated that route.

my mom is in a completely different set of circumstances, but at least once we successfully treated shortness of breath with anti-anxiety medicine. of course, other times it was something else but we had all the information.

good luck, hon. as Pat said to me when I first came here, and it meant the world to me even though it's SO simple: "we're here. we care."

xoxo

bunny

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Hi Janet..

Sorry to hear your mom isn't doing so well at the moment. I read all the replies and the advice about asking her doc about depression is something I would seriously consider, as it can't hurt to explore all reasons for how she is feeling. I hope things get better.

Many prayers

Libby

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Dear Janet, It would help if you provided a little bit of information about your mom. My husband is also stage IV but he's doing great and still going to work every day. Many of the patients in these forums are Stage IV and actually doing quite well. It is not an automatic death sentence and the prognosis is of course different for everyone. I think your mom is slipping into depression and it needs to be dealt with because patient attitude can have an enormous impact on prognosis.

Praying for your mom,

Trish

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I am sorry to hear your mom is not doing well. I too wonder if it may be a form of depression...my FIL had started to decline for a while too...just didn't want to eat, didn't want to drink, didn't want to walk...just started laying around. Then he had a weekend of being very sick - I think because he was taking pain pills as he is recovering from surgery, and was not eating. A few days later he had an appointment with his surgeon - and the surgeon basically told him that his lung capacity was not good and wouldn't get better unless he walked...he is weak and won't get stronger unless he eats. I think it kind of got him moving again, and he is doing better...he even talks about being hungry.

I hope that your mom starts feeling better...maybe you could start with small goals for her...things she can do and have some success with.

Good luck.

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I'm saying prayers that your mom's condition improves and sending good thoughts your way! It takes a lot of strength to be a caretaker and see soemone you love suffer. Hang in there!

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Thanxfor the input. My Mom has been on antidepressent for about a month..I dont know if that is long enought o work yet? We had to hospitalize her yesterday as her hemoglobin was low and she was dehydrated. Now at least they are doing more tests to see if there is a reason she has declined so much over the past month or so. If not I think that maybe she has lost the will to live and was maybe trying to hasten things??I dont think she is enjoying anything in her life at this point. We bring all her favorite foods and make her shakes..Boost with ice cream etc but we can only encourage her to eat. Tomorrow we get CT results to see if there is any growth or spread of the cancer.Is anyonelse out there on or familiar with Perifisone..the clinical trial drug my Mom is on.???Thanks again for all the replies...no one else understands exactly what I feel like those in the same boat....Janet

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Janet--It's great that they're getting to the bottom of why she has been feeling so poorly. That's really important. I am going to say that it may NOT be depression, or wholly be at least. That may be part of it. It could be partly because of the low heloglobin and the dehydration. If things don't improve KEEP TALKING TO THE DOC about it. I've found that thinking it might be depression is an easy thing to do, especially when all we have to go on is words on a screen, but from experience it's not always that simple. Also, I think if it were me I would find it very frustrating to have people thinking or saying, "You are doing this because you are depressed," when in reality I wasn't able to do things because, I felt like crap and things in my body weren't right.

It's obvious that you and the docs are doing what you can to get to the bottom of it, and that you're not just blaming the 'D' word, and I'm glad for that. Your Mama is very lucky to have you caring for her and advocating for her.

Val

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Hi Janet,

Sorry to hear the news about your mom. Poor women, she must be so scared. I wished she came to this site so she can see that many people here with stage IV are still alive and kicking and doing really well.

She probably feels she is going go die and just does not have the motivation to fight.

I will pray for her and hope that things will change.

I am sorry that you have to watch her go downhill and feel so helpless.

Maybe that anit-depressant she is on is not working for her. There are so many differnt kinds that sometimes if one doesn't work another will.

Peace be with you Janet. We are always here for you 24/7. Keep us posted.

Maryanne

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I am not a psychologist but i am a 4th year psychology student, and your mom's symptoms do seem like a classic example of depression. Many people beleive than depression is inevitable with a serious illness, so doctors will often fail to diagnose it. You mentioned she is currently on antidepressants. These can take up to 8weeks to get the full effects. Definetly voice your concerns to the Dr.,and dont let anyone tell you depression is "normal". Try to get you mother involved in things she used to like if possible. Sorry about your mother, and i hope things get better soon.

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Hi Janet

I am sorry to read about your Mum. My Mum was diagnosed with Stage IV NSCLC in July 2003 and she died on August 4th this year. I am not familiar with the trial you are referring to, sorry. It is good that the docs are investigating what is going on with your Mum. I think that is half the battle.....to get the docs to take the symptoms seriously and try to treat them appropriately, rather than just assuming it's all due to the cancer and there is nothing they can do about it (I felt that is what happened to Mum at times). I don't know about the depression issue either, but it's worth investigating. From my understanding anti-depressants do take a while to take effect. Mum suffered with dehydration as well, and I think this certainly contributed to her fatigue etc. Has your Mum being having any delirious type episodes or problems communicating with you? I think that dehydration can also contribut to this.

I wish I had more answers to help you with, but please know I am thinking of you and hoping they get to the bottom of the problems your Mum is having so she can get back on top of things once again. Remember, where there is breath there is ALWAYS hope.

Love

Jana

xx

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