Hi all ,

My father has completed his TX on 25th April 2008 , but from the very next day hes in hospiatl till date for various reasons .
1. Low electrolytes
2. mouth secretion.
3. tachycardia
after tracheostomy on 19th May hes much better and electrolytes are also noramal alls normal except for the weakness which is fine as hes having food from peg and just stated eating by mouth.
But the one main problem is his ATTITUDE
Its been such a long time sine we have seen him similing forget laughing. seems he has lost all hopes ... (I know he has gone thru alot but thankfully alls went well )
even in hospital he does nothing but lay there on bed either sleep or stare at the TV without caring wats happening.
We have tried to make him undertsand how good hes doin and he has many many years to live... but seems everthings falling on deaf ears.
It sometimes becomes so diff for me n for my mom
My mom sits in hospital entire day helpng him out , and at nights its me cause i have work at day.
Sometimes its so frustrating feels like ur doing so much and all we are asking for a him to be more positive , just a smile would do it ... but all he does is stare else where wen we talk to him.
I really dont understand what to do .
Should i consult a Psychiatrist ?
I am forsure with this kinda attitude hes gona cause more pain to himself and us ...
I desperately need some advise?

Why is he still in the hospital exactly? Am I right in inferring from the info. in your post that he has been there a lot since the end of his treatment? It sounds like he could be depressed, he could also just be angry. Either reaction, after going through what he has been through, is natural. I know it isn't fair to, or easy on, you and your mother, and he's lucky to have two such dedicated caretakers, but please don't assume that just because he's this way now, he'll be this way forever. He may just need some signs he's getting better to cheer up a little--for example getting out of the hospital.

However, while he's there, I would talk to the doctors and see if maybe they can talk to him about an antidepressant.

There are lots of other people who have been caretakers that post here and I hope you will get good advice from some of them as well.

Nelie

Hi Nelie and thanks for ur advice ,
well the thing is hes really unable to move around by himself so we thought its better to keep him in hospital for some time till hes able to move around and also since he has Tacheostomy the kind of care it needs is best taken in hospital.
We can get him home which we had tried last month but soon we realised we were not able to manage him. his 2 hourly feeds , then his secreations were abit too much to handle and the very next day he started getting fevers and disoriented and so we admitted him again.
Franckly we are abit afraid now of getting him home.
Also wat are these antidepressant?

I think it may be helpful for him to talk to a mental health professional since he's not responding to your words of encouragement.

^^^ even i think so , but am also thinking about what Nelie said , would it be a good idea to get him home now ?

It's probably different in Inda, Here it is usually not the patient or patient's family that decides if he or she belongs in the hospital but the doctors (and, unfortunately, often the insurance companies have a lot of say as well). Avinash, What does your father's doctor say about when he should be ready to go home?

Nelie

ChilledFire. I am 72 yrs old and have been thru all of this stuff and then some. Your Dad needs to be encouraged and made to know he can beat this disease. I am older by some years than he is and I am independent and do everything for myself. I even take care of my house and yard. I'm sure your Dad can be urged into doing these things too. He has to get the feeling of being independent. Good Luck and show him that sickness means nothing unless you let it control your life.

I am sorry to hear your father is not responding to all your encouragement and know how very difficult it is to be on the caregivers side of the fence. My husband responded in a similar manner following treatment, it was like he crawled in a hole and pulled the hole in after himself. First I think your father is not that far out of treatment, and the other problem I found was that patient and family are not mentally prepared for the the slow recovery following treatment. The treatment causes such nasty side effects, and all you can think of is how much better it will be when all this is finished, and then when this doesn't happen as quickly as we thought it would it is quite difficult to handle. Also think how your father coped with stress before he was ill? For my husband it was to avoid it, walk away from it. When the cancer happened, he could not walk away from it and I, nor anyone else could take it away for him. He just could not emotionally handle it. I do think you should get some psyciatric support for him if he will consent to it, and he would likely be put on anti-depressants. Just be aware that it takes up to 4 weeks for the medication to reach its full effect and he may need to try different medications before the most effective one is found.
Is there a support group or could his treatment team have an oral cancer survivor visit him so he can see there is light at the end of the tunnel. Wishing you all strength and courage to face each day.

You might think this is strange but could he be hungry? My mom has lost a lot of weight the last 5 months, of course we didn't know she was sick & couldn't swallow. She had a peg put in last week and what a difference it has made already. She hasn't gained any weight but her attitude is much better because she is no longer starving. Just a thought.

Avinash

Your father just very recently finished treatments. He probably still feels pretty lousy. Many people going thru this type of cancer need some help from anti depressants. That in itself is more than enough to upset a person. Does the hospital have a counselor to speak to your father? Its also very upsetting when after getting thru the horrible treatments, that you still arent back to normal and cant eat and taste things like before. Is your father getting enough nutrition? It may hurt him to speak, maybe thats why he isnt talking. I went thru 3 weeks of silence, my kids loved it. I hope this helps to give you a few ideas.

Thanks all for so many replies/advice, thats wat i like about OCF , instant replies
atleast makes me feel am not alone.
@Nelie : well My Oncologist had suggested to take him home when we are comfortable and hes all ok. infact hes ok now but just sometimes gets this fevers and infections and doc says its ok cause in his state the immunity is too low(not to forget he has tracheostomey which is like a gateway for all the infections) and even if someone sneezes outside the room he might get that infection.So he is always on a dose of antibiotics which rotates every week.
Atleast till date the Insuarance companies have not cause any problems and they are really helpful (guess its because i have a Corporate policy )also the Doctors are very helpfull my oncologist and even the physician who visists my dad every day.

@EzJim : when hes back to normal healthy sata we can suggest him your thoughs but as of now hes unable to walk around all by himself.
Thanks for ur advice .

@wallyswife : yes Ur are so true, One thing that i like about my dad is his courage he didnot complian even once during the treatment and even now. thats why i sometimes feel so sorry for him.
about support group : well thats the sad part as i have already started a thread about "OFC in India" cause here we dont have such groups.
Thanks for your advise .

@Tracysdogs :yes even though hes on peg and gets feed evrey 2 hours, from mrng 7 to nite 11, if we ask him he says hes hungry.
And the good part is hes already started to take in semisolid food.best part- he enjoys sweet :)So in between 2 hous feeds we try to give him food orally.

@ChristineB :theres no councelor but the doctor who visits him every day is really good and makes him very comfortable he does a far better job in just 5 mins than we trying a day.about talking since he has his tracheostomy done talking is out of question for now.

Again , Thanks all for advice.
As for me today am goin to do some shopping.
My list for shopping :
1. Playing cards.
2. Jigsaw puzzle. will see to it that i get one for children and one for grownups.
3. Some books for reading (he doent like reading much) but lets see guess worth a shot.

Any other ideas fot the above list will really help.

Also i talked to the doc yest : he said to boost his spirit dont treat him as a patient , just treat him normally.Dont make him lay on the bed all the time , make him sit on bed try different places, and the most difficult part he asked us to do is entertain him(trust me i kno my dad its really diff to entertain my dad).

once again thanks all for the advice it helps alot.

Go for a couple word search magazines and maybe a crossword book or 2. I do those and have a poker machine that cost $7 that I play a lot too.

Hey guys ! great news my dads feelin much better now and gaining alot of strength cause of Nourish and resourse not to forget every 2 hors feed... hes also improved on his atitude and does things like walking and moving around all by himself
We are planning to get him home this week lets see wat the doc has to say now ....

Avinash,

That's wonderful. I know you're excited. Keep it up.

Avinash, That's great news. I knew once he started feeling better his attitude would improve too.

Nelie

Consuming 3000 cals a day did the trick for me to so lets hope he's over the hump and coming out of that dark tunnel.

Tell your Dad we are proud of him and his courage.

^^^ thank u all
Yesterday we celebrated the 50th day in hospital half century as we call it here(cricket oriented country).
Anyways the only concern now is , since hes feelin really good now and has gained lots of energy hes getting tired of hospital ... so wanna take him home soon.

Thanks again .

How wonderful! You've brought a smile to my face! I'm gonna tell my mom she better keep takin the food down the peg!! Sometimes I get really down then I read good news like this and it brings me back up. Enjoy having your dad home.

Avinash

Thanks for the updates. Its always so encouraging to hear when someone improves. Wishing that your father gets stronger everyday.

More Updates ...

We will be taking dad home on thursday ... after 54 days in hospital
Also will be getting the CTScan done on thursday itself ,to see how has the treatment gone....

Am just hoping to see and hear good news now... its been very a very long/painful/emotionally draining 54 days, post treatment...
So, am just praying - GOD Please , one good news now will change it all ...

ALL : please pray for my dad,
Thanks Again !

Well todays the day !
Hope all goes well and he get home Happily,
We will be doing the CT sacn also today but will get the result prob by tomorrow.
We will win this Battle ......

Finally ! we got him home yesterday , i could see him very happy ... we just faced one problem .. he was not able to sleep at nite , and am nott sure why ? any body else faced such problem ?
Also we will be getting his CT scan reports today ! Hoping for the BEST now !

we wish you best of luck as you r going home after long treatment . try and live in today, its of no use of thinking and planning for future . today if dr says he is alright , involve as fast as possible in normal routines, and b strong always to face challenges even this where we dont have any control.

^^^ Thanks ! but we need to hear a good news now , that will surely cheer us up, alot !
But sleepless night is that normal ? cause just before comin to office i saw him sleeping peacefully.

Updates :
got the CTscan reports ,this was in comparison with the reports after Chemo.

Conclusion : There is a considerable shrinkage of the tongue based mass.
Two small necrotic lymphnodes are seen in right jugulo diastric plane .(i have no idea what this means except for the fact that necrotic means dead)

I am not sure what do i conclude from this, will be meeting our oncologist 2morrow.


But i have a gut feeling that its a good news....

It sounds like good news to me. Lymph nodes with dead tissue means NOT cancerous tissue.

I had odd sleep patterns all through my cancer treatments. He is probably more anxious than you about what the scans will show--insomnia I think is normal but there is also medicine he can take to help him get to sleep if it happens too much or for too long. Be sure to mention it to his doctor.

Nelie

Get him some ambien thru his Dr and get him to take one about 30 minutes before he goes to bed. It works for me , but without them, I can't sleep at all it seems. I even gave up pain pills until this evening, so I'm no junky for sure.

Avinash:
Just an FYI, my sleep patterns have been dramatically altered since this entire life changing event began! Even today I sleep totally differently than before. Many evenings I go to bed at midnight or later and I'm up in a couple hours. I then may catch a nap after work, etc. There's no rhyme or reason to it and I feel rested. I rarely take any medication at this point (every now and then a pain pill but rare). I truly have great energy considering the brutality of the treatments, and I continue to improve every day. Speak to your father's doctors about it if he's not having any "Restful" sleep.
Best Wishes,
Steve

Avinash


A good nights sleep has become a thing of the past for me since I got cancer. Its been over a year since I have been able to sleep soundly on a regular basis even with taking medication.

Ask your dad's doctor for some medication to help your dad to sleep better.

Christine

thanks all for advise , we have started him on Restyl and it works wonderfully, but the problem now is he has no bladder control and wets the bed atleast twice a nite..even thou we use adult diapers

Any advise on this ?

Avinash,
Many factors could be affecting your father's situation. Please be certain, given his age, that his prostate health is also being monitored. Being on a high liquid diet can certainly affect the bladder. Some of the mediacations he is taking could contribute to this situation. Sleeping soundly because of the Restly is another factor. There are several medications to help with bladder control. Do not be shy in discusing this with his medical team. It is probably a 'minor" problem which they wont ask about but which can be easily controlled.

Congratulations on your constant vigilance on his behalf. He is certainly fortunate to have you as an advocate.

I feel so bad for your Dad. I am up about every hour or less during the night from so many liquids. I can only imagine what it would be like if I couldn't get out of bed to make the trips. I agree with Malka that the Dr can give him a script to help with the water.