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Old 01-09-2003, 07:06 PM   #1
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mrsash36yrs HB User
Unhappy He sleeps all the time-what do i do to help?

This is a year since my husband was diagnoised. He did the radiation that burned large holes into his back that keep re-opening. (This is a rare happening..he is just unlucky) Just about Thanksgiving we leaned it has moved to his liver and God only knows where else already. His body is wasted away. he has no muscle left he is just skeleton..but can get worse because he was down to 112 lbs this summer..he must be nearing that again. I am home alone with him. Our children do what they can..when they can and feel like it. I did In Home Health care as a nurses aid. I took care of many men until they died. I thought that really broke my heart then. This is really hard to live, though. I am disabled with Dystonia and Epilepsy that keeps me home. I was home over 3 yrs already when we learned he was sick. A town dr sent him home with vomiting blood as bhronchitis. I threw a fit and got him help!! Now, all he can do is sleep. I have tried to do the same. I don't want to wake up...when he doesn't. ...My heart goes out to all of you with your sufferings that i have been reading. Maybe someone will want to share with me these hard times. I can listen....i can understand. Sincerely,Donna

 
Old 01-09-2003, 11:37 PM   #2
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Hi,

Well what you can do is just be there with him and for him, as you are. It is HARD, I know.

My husband was diagnosed in April 2002 and he is doing well now, thank God. He is on Gemzar chemotherapy and he is responding SO WELL to it. He gained weight and he has his appetite and his energy is not gone as much as it was when he was on Taxol. Taxol took his appetite away too.

I was a Nurse's aid way back when and I too took care of dying people and it was very VERY heartbreaking. I feel it is worse when the one we are caring for is our own spouse. What could be worse? Losing a spouse is number one on the stress scale - even over losing a parent or a child.

I am home too due to agoraphobia from panic/anxiety disorder. I don't even go w/my husband to chemo as I just cannot handle medical settings. My in-laws take him. I feel extreme guilt about that too. I run my own candle company out of my home to and it does help pay the bills as my husband is too ill to work. He is on SSD and what that pays is a complete joke. We were forced to sell our home and downsize to a condo! That broke my heart too. We had four dog's and we were forced to find homes for three of them as we were not allowed that many here. We kept one and we did get her a playmate as we noticed other people had two dog's so we TOLD the association here we were getting a puppy and they ok'ed it. I wish I had know that before I found a home for THREE of my dogs. I miss them terribly - they were like our children.

CANCER SUCKS...but try to Choose Hope and live one day at a time.

Hang in there,

Mary

 
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Old 01-11-2003, 08:24 AM   #3
Dan&cheryl
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Hi Donna, & Mary. I just want to let you both know that I have really had my hands full. This is the hardest thing we will ever have to do. My poor Danny is suffering so much that I started praying for it to be quick. I feel like a nurse so any Questions either of you have, just ask. God Bless...Cheryl

 
Old 01-11-2003, 11:19 PM   #4
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My Dearest Lady, my heart breaks for you, Cheryl. I understand your prayer for it to be quick. Having done "In Home Health Care", which included working for Hospice......I have been praying for "it to be quick", basicly for a long time, already. I am praying for mercy for him. I pray the same for your husband and for you, too.(also, for Mary) Thanks for responding to us in your sad time. My husbands back is now open wounds over about 75% of his back. He is hurting with that. It is the Radiation burns all opened up for the 6th or 7th time now, i am losing count. I dress it 2 or 3 times a day. The medication I put on helps ease the pain, so he has me do it more often than it should be. He tries so hard not to be mean talking to me in his pain and fear that i can see he is in. His life expendency is now supposed to be about ending next month. Any time after will be an entra 'plus'. He told me after he saw the dr. in Nov. that he had 6 mo. probably. I wish he would 'stop' the Chemo. It is just extra pain to go through. I told him tonight that if it were me i would not take on the 'more pain'. I have to support him in whatever he choses on that tho. Cheryl, do you feel bad for thinking of life without your husband? I do. I don't know what is ok to think about, now. I am scared. Please, Lord help each of us and comfort our husbands , Have mercy on them, please, in Christ's precious name amen. hugs to you both, Donna ps write me anytime you might feel like it. YOu are NOT ALONE.

 
Old 01-14-2003, 10:37 PM   #5
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Hi ~

I just wanted to comment on the fact that I too think of my life w/out my husband. I too wonder WHY he still goes for chemo at this point...he is stage four, he was given six months to live nine months ago yet he has responded WELL to chemo. He had a brief remission, yet that did not last too long. He is now on Gemzar and he did well, but today we went to get it and they said, "Nope...your white cell count is WAAAAY low." So they gave him a shot of, "neupogen" (sp?)...I have NO clue what that is even for, but I would imagine it is to bring his white cell count up. He said they told him something about his bone marrow? I am confused. He is to go in the morning for another shot and attempt chemo Friday. It is sad, so so sad. I mean I wish this was not happening, but it is. I wish he would have been stage ONE, not FOUR. I wish I didn't HAVE TO think of MY future - but I do, we ALL do. We will be left here to live and that will not be easy, ESP in the beginning after they pass...but we WILL heal. It won't be easy AT ALL...but we will get through this. I had him make a will, we moved, I cut up the credit cards and got all of our affairs in order and why? Because I want MY future somewhat secure so I can mourn his passing w/out all that other 'stuff' to worry about. He never properly provided for me; i.e., life insurance - he does have ONE SMALL policy, he never secured us w/insurance and because of that we were forced to sell our home, we were forced to find homes for our dogs, we were forced to downsize, we lost a LOT of our pride as before we lived VERY comfortably and now it is a financial struggle. I believe it is OK to think of "us" here - we are a part of this too whether or not we have the cancer or our spouse has it. It is a family illness and it affects us too! I too sometimes wish he would just stop the chemo and ENJOY what time he has left not battling low white cell counts, exhaustion, anemia, illnesses - he gets every cold as his immune system cannot ward off illnesses as it used to due to the cancer impairing it AND the chemo impairing it even more. I asked him, "Are you happy? Are you content? Do you wish to continue on THIS WAY - suffering so...dealing w/bills and financial issues and stress DAILY?" He said YES...so that is the way of it then. I support that - I may not agree w/it, but I support it as it is HIS DECISION alone and I will support it as I would want him to do if I were the one w/the cancer.

I do feel guilt at times as I sometimes wish it was over - all over. All his pain - over. All my pain - over. I wish I could just get through it and move on with my life. It is a daily struggle and battle and he gets the chemo and he gets so ill and he just starts being himself again and BOOM - it is time for chemo AGAIN.

I hope no one feels I am cold-hearted, I am being HONEST. I love my husband and I WANT HIM TO LIVE forever...I never thought at 35 years old I would be losing my husband. I will fall apart when he dies...I won't attend the wake or the mass...I do not believe in them and he does so we did discuss that and I told the family. I will visit him at the cemetary often. When I go I want to be creamated (sp?) and I just want a mass and I want my ashes throw to the ocean...so I am at peace. I DON'T want people to "see" me dead!! I don't want them to remember 'that image' of me EVER. My husband wants that for himself, and so be it. I will NOT see him dead...I cannot and will not do that...no way no how.

When we discuss end of life stuff he says to me, "I am not even dead yet and you have me dead and buried." WELL HELLO...this is a man who NEVER properly insured our future...he never cared enough, he took me for granted, he lied excessively, he stole from me - yes he did, he emotionally abused me, he cheated on me once years ago (WE NEVER GET OVER THAT), but I cheated on him after that to "pay him back"...yet I never told him about it - but I think he knew, I never trusted him - how can one trust a habitual liar?!, we had MAJOR marital problems for years and years yet I stayed and I settled. How SHOULD I feel?! I love him and I feel for him and his death will keep me in bed for months - but one day I will notice the sun again, and one day I will meet someone else, and one day I will heal...I will never completely get over it - who does?

Just my thoughts...we are entitled to have our feelings too. This affects us too...

Mary

[This message has been edited by MaryP (edited 01-15-2003).]

 
Old 01-15-2003, 06:56 PM   #6
Dan&cheryl
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I have been thinking about funeral plans constantly and it amazes me when people come in and ask if I've given it any thought. Like I can think of anything else. I even ordered black clothes from Penny's catalogue since I rarely get out. When I get upset or nervous or scared I eat so I ordered two sizes just in case. I went through menopause, quit smoking and took that God awful Prednozone for my asthma that I went from a size 12 to a 16 in only a couple months. Danny lies and says I still look 16 years old to him. I miss him so much. We have no life, I keep him medicated so he sleeps through the pain. I am always picturing my life without him, I used to do that when he wasn't even sick yet, I think God is punishing me for that, only it's Danny who's suffering.
My situation isn't quite as bad as yours sounds Mary, we have some life insurance to help with the house and if I stretch it I may make it to Social Security. I may even qualify after a fight for disability on Dannys S.S. because of my asthma. ALSO, I know I am definately going to sue the Dr. for not doing tests sooner. 7 months is a long time for a rib not to heal and I think tests should have been done after a month or two.
Well, that was my rant for the night. It helps knowing I am not alone in this, but I really am sorry anyone else is going through this too.
I probably should find out if Danny has any special requests but that may make it too real.
What are you guys giving for pain? Danny is now on methodone and ativan. nothing works...
Take care girls...Cheryl

 
Old 01-17-2003, 11:22 PM   #7
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Dear Cheryl & Mary, I understand all of the feelings that you both are having. I too think much the same. My husband had the Cancer for a year before it was diag. and the Specialist saw it on the xray the family dr had taken!~ But, that dr overlooked it!~ He also blamed his pain on "a broken rib"!~!~ grrr!~What is wrong with these doctors! When my husband went back with coughing up blood by the cup full, still he was sent home and it was called Bhronchidis (mp) I right then told the dr off!~ We got home and he threw up blood all over the place. I called the dr office. The nurse told me that even if i took him to the Emergncy Room they would not do anything for him until the next day and only if we got orders from a dr! The next morning I again called and said He needs a specialist now! He got in that day and diagnoised in a couple days. grrr..If we don't 'TAKE CHARGE", nobody else will! Still we had lost a whole YEAR, that could have made a world of difference. I do wish others knew that!
I am different in that, I want my husband at home when he dies. I want him in my arms. I want him to feel my presence. But, I have done such work for years and am conditioned for this. I thought i was doing nurses aid word to take care of my mother in her last days. Never dreamed it would be for this. I pray constantly, that I don't fail at this. I get so scared i keep throwing up...and yet I also have gained lots of wieght. I miss my husband too. I miss being hugged and held by him.Now, he can barely hold my hand for a minute or so. He has emotionaly and physicaly pushed me away for about two years now. I knew something was wrong. Even before he ever went to a dr. I had told my children that their daddy was dying. I told them I had seen it enough before to know.. but, i just didn't know, of how yet. They thought i was nuts, of course. But, I saw the differnce come on slowly. It takes up to five years for this cancer to be diagnoised , i read. The chemical it puts out messes up their whole body way back then, tho. I miss him "taking care of everything".
I to am left with debt. He managed everything. He used credit cards and we are so far in debt that he has refused to tell me 'how bad'. I guessed up to $30,00 and he said "That is about it"!~!~. We have nothing but this old house. I got inheritance just in Oct. and i paid off this house. It only cost $27,000 20 years ago so it is not much , but it is home. He told me the credit cards may take it away anytime now. "Thanks alot".Dumb move on my part , i guess?!~ Yeah, that hurts! He has $5,000 for burial that is only good until this March from his job. If he lives longer than that, (May it be so, Lord willing) then I have to pay the cost...with my disability check. We were on Medicade for a couple months. Today we got a letter saying that if we want to keep Medicade, we have to PAY over $800. A MONTH......SPENDOWN. Are they NUTS!!! I could buy some kind of Insurence, surely for less than that! tHE Chemo. treatments costs several thousand Three thousand each, i think. and the Cat Scans cost over $1000. each time..so when the insurance runs out March, when he is terminated from his job (totaly)...we will be in debt 'big time". Geez!~ So what is a wife supposed to do?? Oh, dear i hate to have to live with my kids!!! Where is a book that tells us "How to Make it After You Lose Your Husband"??
Emotionaly, will be paralizing enough. How on earth can I think of what to do about all of the rest of this? If it were not for Prayer and Trust the Lord will see me through somehow i would go nuts!~!~ Well, I am on Paxil now so that may help.
Don takes Oxycontin and Tylanol #3....they don't stop all the pain eaither he keeps saying. He is repeating sentences now ..maybe the meds maybe brain cancer, who knows. Keep in touch ladies. We can overcome this..others have. We can to. Thanks for writeing. It helps me and Thanks for listening to me. You are the "ONLY' ones that know what i am talking about. Hugs and prayers, Donna

[This message has been edited by mrsash36yrs (edited 01-18-2003).]

 
Old 01-18-2003, 08:44 PM   #8
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mrsash36yrs,

I so relate to the financial situation. It is hard.

I too wish they had a book telling us how to 'make it' when our husband's die as the emotional component is quite enough.

May I ask if the Paxil is helping you? I have some here from my doctor but I am afraid of medication side effects - are they bad? How long have you been on the Paxil and does it help you to cope w/this better than if you were not on Paxil? I need SOMETHING as this pain is TORTURE. I feel so sad and so alone and so helpless. I see him go from good days to bad days...and it is hard.

When he quit his job due to his cancer out went our health ins. He is on Medicaid and he gets SSD and food stamps - and I work out of my home making candles and I am in one store in my area and I have an Online Store...but man that is not going to be enough to support myself when he goes - I need his SSD and they told me when he goes so does that check and the stamps. GOD help me. I am paralyzed w/fear.

Hang in there,

Mary

 
Old 01-21-2003, 08:38 PM   #9
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Dear Mary, I took some time to answer as i was wanting to see just how the Paxil worked for me. I had only started it last week..i mean taking it regularly. I had to quit it!~ Perhaps it don't mix with my other medications...i don't know. I have tremors from my neurological problems and the Paxil intcreased them more each day. When it got to my whole body was in tremors including my trunk my stomach the worst i quit. When i did I slept all day long Monday and all last night ...I was so worn down from lack of sleep with it. The only way to tell is to try it or rather it was for me. I NEVER will take it again. I was lucky that my dr also gave me Tranxene. That I had taken for many years in the past for anxity. It is working great. My jitters are gone and I don't even have to take all that was perscribed for me. I do hope you get something to help you.
As for your finaces you can apply for Emergency Food Stamps later on if you are alone. In Missouri we can. It lasts for three months. That has helped many people that i know of. As for getting any other help ask the Soc. Sec. Office. I heard many stories and got them all cleared up by asking them directly. I get my husbands Soc. Sec. because i had his three children. Otherwise my own disability for my Ataxia, Dystonia, possible Multiple Scerosis, etc. would only give me about $200, a month. I applied for my husbands disability immediately after his diagnosis knowing that there is a two year wait for Medicare in Mo. As for his work , he had to quit last March about the time his wieght dropped to 112 lbs with Chemo and Radation treatments. I called his work and learned that he would have insurance for one year from that time. I never would have known that IF I did not CALL them. No information was offered to us about it!~ It pays to ask alot of questions! I wonder what other things i should be asking>>!! Now i need to call his work place and ask about his burial insurance he took out there to see how long it is good. But, I have not been able to make myself do that, yet. Just can't.
I understand you being so scared. Everybody else around us.......goes on with life..his family, my family, my kids...only " I", am here to do the worring and the care. I can't think of anything else. Boy, that is hard on the emotions. Keep writing if it helps you. It helps me. I look forward to hear from you. But, i hurt for you at the sametime. Sweet Blessings i wish for you, Donna

[This message has been edited by mrsash36yrs (edited 01-21-2003).]

 
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