HealthBoards

HealthBoards (http://www.healthboards.com/boards/)
-   Cancer: Lung (http://www.healthboards.com/boards/cancer-lung/)
-   -   Just Frustrated and Confused (http://www.healthboards.com/boards/cancer-lung/450873-just-frustrated-confused.html)

pjoi4 11-30-2006 04:15 PM

Just Frustrated and Confused
 
Hi Everyone,

November 30, 2006

Frustrated to no ends. My in-laws are driving me crazy. They have my husband convinced that he can beat this sickness thing (cancer) if I just move out of his way and just allow him to eat. My husband now wants to cancel hospice care and go to visit with his doctor. His sister called me yesterday and wants to take him to another doctor. His mom is totally against not feeding him even though he cannot swallow even water. She ignores the nurse and she constantly comes into my bedroom at night felling my husband’s stomach, arms, legs, head and telling him to wake up he is sleeping too much and my mother-in-law wants to sleep at the foot of my bed on the floor in my room to watch over my husband. He finally took a larazapiem for anxiety and being just so overwhelmed with visitors this week and the arrival of relatives flying in tomorrow. He refuses to take anything that will make him sleep or feel any type of drowsiness. He only takes the pain meds that are absolutely necessary to help with his pain he has even reduced the dosage because he felt that he was taking too much even though he is still in pain. He now takes the dethamethasone for energy. He told the nurse yesterday that he had a hard time swallowing his boost shake because it make a lot of mucus and almost choked him. Today I have given total charge of his eating over to his mom. I told her that she could take over those tasks. She feels that solid food is best for him and that the only reason he has lost weight and is thin is because I don’t feed him. She just yelled the other day at him that he can’t die on her and what is she supposed to do if he dies. She started crying hysterically! I didn’t now what to say or do except to say that the sickness is what is making him weak. We can’t say the word cancer in my house because it is considered taboo. No one wants to call it by its monster name. The other sad thing in all this is that my husband still has not shared with anyone about his sickness but everyone has advice or suggestions to offer to him. He has lost all his weight and most of his muscle tissue. I could see his full skeleton structure outline of his body. He uses oxygen to breathe at night and he is winded after putting on his clothes. He almost fell backwards off the vanity chair in our bathroom two days ago but the back dresser drawer broke his fall I was glad he did not break a bone. Hospice ordered a chair and wanted to order a walker for him. No way are we having you walk with that thing his mom and brother shouts. The hospice truck arrived today with his chair with gripping handles. His mom laughed out loud and my husband agreed with her that the should send it back because he is not yet at that stage where he warrants that type of chair. I explained to the driver when I went outside that we are still in the denial stage even though his poor body is shutting down before my eyes. I am being tortured by him and the family now. I was asked by my husband today to place a call to his Oncologist because he needed to order blood work and possible get a blood transfusion. If he gets the transfusion this will give him a big boost in energy and my husband also wants to try to eat enough food to gain back all the weight that he has lost. It tore me up inside to agree with him. I phoned his doctor and explained to them the situation. I will have to pay for a possible doctor’s visit and labs before we end up canceling our hospice care. I was given a sheet by our hospice nurse as to what to expect next on the decline in my husband’s health last night. Am totally confused today since we are considering more possible treatments and cures. I am not against hope don’t get me wrong I am fighting until the bitter end. But I know for a fact that any chemo treatments at this time will probably kill him. He is extremely weak and can barely crawl out of bed he literally has no energy and is in a constant drain mode all day. There are so many people giving advise to him about his health that does not know the full story and he wants to chase after every suggestion. They are telling him that the doctors should be able to figure out why he can’t eat or drink anymore or why he is so fatigued all the time. Maybe I am the one with the problem. After all we have only been dealing with Stage IV NSCLC for over one year now. I need to have my head examined or something. I beginning to feel unwanted, misjudged and a complete outsider. We had a full blown private Mass at our home yesterday. My husband did confession with the priest and anointing of the sick on yesterday. It was a beautiful mass. The priest is new at our church and their specialty is dealing with terminal ill people. I filled the priest in on the details and he was very calm about everything. If my husband truly has very little time left, I would rather he spend some of it with his children. He has lost interest in the kids and spends very little time with them. The kids still do not know about his cancer.

I have no place to explode and rant and I am sorry for all this writing.

Please pray for my family and myself at this time. I will try my best to be a peaceful and spiritual person as best as I can during this most challenging time.

Thank you all for listening tonight.

Renea

Kimslos 11-30-2006 05:30 PM

Re: Just Frustrated and Confused
 
Renea,
Wow! You made me cry when I read your posting as I so can relate to it! My MIL lives 5 miles away and we are not to talk about that Stan is getting worse. She is to only be told he is getting better and then when she asks me how he is doing I tell her he is not doing well and she goes wild on me and says, well you better get on the phone and tell the doctor to fix it! (she has lost her mind) I remind her that Stan has cancer throughout his entire body and sadly enough the pain and the bad days are expected and she tells me she does not want to hear that and why do I always give bad news and not good news. The other terrible thing is that she has a friend who has CONVINCED my MIL that someone in India could cure Stan! So...this friend got on a plane to a country that is not that safe at the time and stays there for over 2 weeks and still tells my MIL that Stan will be wrong. What is that lady thinking?! I told Stan I would love it for that friend of hers to prove me wrong, but don't feed your mom false hope! My MIL won't even call the house because she does not want to cry. She cries all day and prays all day. I know it would be terrible to lose a child, but at the same time she should be enjoying the time she has with him. But we are talking about a very negative, bitter lady. She also tells me that I did this to Stan and I am to blame for what I cooked for him. (need I remind her that her mom died at 51 of what they thought was liver cancer, but now think lung cancer and believe it is genetic?!)
Oh, I am sorry....you got me going when I read your mess. I am so sorry Renea and wish I had some words of advice, but I am at a loss since I have the same problem. (Thankfully she is not living in my house, whew)
Oh shoot....I will continue later this evening...I am suppose to be somewhere at 5:30 and forgot....Hugs to you and sorry to have vented a bit myself as I know you needed to vent, but boy yours got me going, lol. Anyway,I will write more later tonight. Must run.
HUGS from someone who can really relate!
Kim

aggieTs 11-30-2006 07:50 PM

Re: Just Frustrated and Confused
 
I felt so badly when I read your post. What is happening to your family is very common. People spend so much of their time and energy trying to cure an incurable disease that they forget how to live. Why is it that people think you are giving up if you decide against treatment. Your husband family have not seen what he has been through as you have, why is it wrong for him to be able to come to terms with his death. So many things will go unsaid between his children and his own family members. They should all be making this as easy as possible on him and embrace him with love and memories. I wish I could say something that would make it better for you. To watch someone you love suffer is more than people should have to bear. I will pray for peace for you and your husband.:angel: :angel: :angel:

Janmarie2 11-30-2006 08:03 PM

Re: Just Frustrated and Confused
 
Renea and Kim, I do not even know what to say to you both ( imagine that !). When I read your posts it was like reading some horror story as what a nightmare the MIL's have created as if your husbands cancer is not enough.

We frequently have situations at work were one member of a terminally ill patient wants everything done and despite the majority of the family not wanting that the patient ends up on life support and I feel we then torture them until they do die which is so sad. They could have had a peaceful death but due to someone not being able to let go they die a horrible death in the hospital. Yes it is hard to let go but sometimes it is the kindest thing to do and why some people can not get past their own selfish reason and do what is best for the person is beyond me.

I will send lots of prayers your way that the MILS back off and let life happen.

Hang in there and feel free to vent when possible as the rest of us are here to listen. JanMarie

jeaniek 11-30-2006 11:34 PM

Re: Just Frustrated and Confused
 
Renea and Kim,
I am so sorry to hear what you are going thru right now - I will definately say an extra pray so hopefully the mil's will back off a little....
I'm sure it must be very hard to loose a child - I could only imagine - but I'm sure it is difficult to see your husband going thru this difficult time as well...it is a shame when there is nothing but fighting going on when there should be enjoyment of the time left together.
Renea, you have every right to vent....please don't feel bad for this!
I thought my family problems were pretty rough until I read this...I guess everyone unfortunately is having a difficult time not only battling the illness but also battling with family.....and that is pretty sad.

angelmama39 12-01-2006 04:08 AM

Re: Just Frustrated and Confused
 
I am so sorry for what you are going through.

The only thing I can say is, denial is something we do have to deal with. The love for a child is different than a love for a spouse, so perhaps the family of your husband is handling this with greater emotion.

I will pray for you and your situation...........

angel:angel:

pjoi4 12-01-2006 04:36 AM

Re: Just Frustrated and Confused
 
Thank you, thank you, thank you, my healthboard friends. I felt a huge weight lifted off my shoulders when I read all the postings this morning. Today is a brand new day and I am suppose to go to the airport and pick up my husband’s cousin and mother-in-laws brother’s (son) whew! The cousin is a Cardiac Surgeon in Atlanta. He has been practicing for the past 20 years. He has always known about the cancer and suggested all the next steps to make. He knows how to deal with my mother-in-law. I am hoping he can help. And Kim, in my husband’s culture the wife is responsible for her husband’s death no matter what the cause was. If he should die, I as his wife killed him. My mother-in-law has also express to my husband that I would band her from seeing her grandchildren and that I might re-marry and she will no longer be able to come and visit his home anymore. She also went as far to state that I would never come and visit the her country or even bring the kids. With statements like that I would be afraid she would try to keep my children. I was so shock to hear that after 16 years that my MIL would all of a sudden turn against me and start to treat me like an outsider when I have been nothing but kind to her from start to finish. My husband’s nurse will arrive this morning before I am to leave for the airport. He wants me to ask her for some medicines to give him some energy. He also wants me to ask her if he could get a blood transfusion to help boost his immune system. He very lethargic when he asks and can barely speak and has to take time to think about what he is asking for. Around 12:45am this morning he forced himself to eat a Boost pudding cup and he tried to make me feel guilty for not having given him any food to eat like his mother did earlier during the day when she forced him to eat a large bowl of custard and fruits. He also complained to me about his stomach being really tight and painful. His mother as usual came down for one of her many nightly visits to our room and sat and heard him say how uncomfortable he was with his stomach. She sat again as usual to make sure that he ate every bite!!!! And if he did not complain about his stomach and side pain she would have suggested a second can of pudding. I was confused seeing that I had handed over all eating and meal preparation for him to his mother. I know that God Almighty is taking me on this journey for a reason and I must stick with the journey until the bitter end no matter what the outcome.

Thanks again for all the support. I have felt more love and comfort from the people on this board than my own husband’s family. I am able to talk to my own mother and she would gladly come down and help with the kids. My own mom admits she really does not know any advise to give me because she herself has never had any experience with caring for or seeing someone die of cancer. She tells me to call her everyday if I need to talk. She also advises to me to pray, stay strong, and don’t let your in-laws stress you out to much and if I must leave the house for a spell.

I will try to write at the end of this day! I thank God that I was able to wake up and see another one. I will pray it is a peaceful one as I am starting the day with positive thoughts and lots of love and happiness to share.

God Bless You All

Renea

Kimslos 12-01-2006 08:34 AM

Re: Just Frustrated and Confused
 
Hi Renea,
Well, you could be picking up your blessing in disguise right now at the airport! I think the cardiac surgeon relative you are speaking of might be able to help you with your MIL....whew! I had never heard in another country/culture they blame the death on the wife. What country if you don't mind me asking? My husband is from Poland and his mom is very set in her European ways to this day.
I love though that you move on and still fight hard for you and your husband and kids and have put up with so much, but yet stay so positive. It is heartbreaking reading how much your husband struggles with eating, but yet still pushes himself, amazing what will can do! I know having little ones he wants to fight so hard like my husband. It is wonderful to hear you have such a loving and supportive mother! At least she is honest and admits she has not gone thru or dealt with cancer, but is there for you. You come across as a person with a beautiful heart and not sure why your MIL is so brutal to you. (so sorry) I know my problem stems from the day I married Stan. She treated me like a daughter until the day after we got married and her claws came out and it was over! She had lost her boy to me and it did not settle well with her, ever. (it didn't have to be that way) I have promised my boys I will not do that to them. They see what my MIL puts me thru and actually resent her and don't have any respect for her. Life is too short for this nonense and I had always thought when my FIL died 5 years ago she would change, but she got worse! Enough of me, but want you to know I can truly relate and feel for you! I embrace you with a big hug in hopes it will comfort you. I pray your husband can enjoy some time with the family and gain some strength. Let us know what the nurse was able to do for him today. You stay strong yourself and yes I will too pray there will be peace in your home.
HUGS!
Kim

Newsome 12-01-2006 11:42 AM

Re: Just Frustrated and Confused
 
Family can either be a blessing or a curse during this time.

When my mom died, all that was left of family for me was step-family from my father's previous marriage 30 some years prior. After my mother died, all the pretense of liking me went right out the window. The people whom I thought liked me in childhood suddenly turned on me. I was not allowed to greive for my mother. I was not allowed to seek outside support. The step-family came in and took over. They moved my father and myself across the country from where I had lived for 27 years. I lost not only my mother, but my home, my friends and everything I had ever known. They threw away many of my precious things or sold them off without my permission. We had to live in their house while my father's new house was being refurbished. In ever way I was made to feel an outsider and unwelcome. I had a bedroom above my step-sister and brother-in-law and would hear them talking about how they did not want me or have to take care of me. My brother-in-law disabled his computer so I could not talk to my online friends or keep in contact with people back home. They tried to control me in every way. The first few days there, my brother-in-law read my journal and convinced himself I was a psychopath and was going to kill him. He's a huge burly man and I am a tiny 5'2" 90 pound nothing and he thought I was going to kill him! I was told to forget about my mother and have major delayed greif problems due to this. My step-sister told me that her family had hated my mother. I never knew anyone who hated my mother. She was generous to a fault and did everything for everyone including these people. When they would visit, she would voluntarily give up her room and bed for them and use the living room couch where she could not sleep and would lay awake crying from anxiety the entire time they visited. She cooked beautiful meals for them. And always, always sang their praises to me. One of their grandkids told my mom she was ulgy when she was visiting there, this she confided to me a year after the fact. I could not believe it. Before my grandmother died for years (mother's mother) she warned me about these people, but I didn't believe it. I wanted to embrace my German heritage and be involved with these people. I was so proud to have a "sister" as a child. It's very sad that anger against my father's behavior has been turned toward myself and my dead mother. And yet they put him on a pedastle. I have no family left except for these people. Every year for Christmas they make a family calendar with everyone's birthday listed. Except for my mother and myself. I've been dealing with this for nine years.

I really feel for what you are going through. It is so hard dealing with the loss of a loved one and then to be made to feel even more alone and invalidated on top of it. I'm so, so sorry. I hope you have other means of a support system. I did not and I'm a mess because of it. Please, please take care of YOU. I know another person who when his grandmother died went through the same thing. It is all too common unfortunately.

Blessings,

conan1017 12-01-2006 08:21 PM

Re: Just Frustrated and Confused
 
Renea and Kim-

If I were you I think I would take my MIL ice fishing before the ice gets too thick ;) . (((just kidding))) I honestly can't say that my MIL problems are that bad. But the very thought of my MIL coming into my bedroom ....#@*&^%! I'd be alot more than frustrated and confused.

On a more serious note, when my MIL is being problematic I simply stop responding to her. No matter how outrageous or annoying it is, I simply act act if nothing happened or was said. And most of the time it works. Kim, I had no idea it was that bad for you. It breaks my heart that anybody would have to endure what you and Renea have at the most difficult time. I thank God He gave us men an "off switch" when it comes to listening. I know, I know ...we often abuse the gift. But I think its primary function was to survive the MIL.

A little humor never hurts either. Did you hear about the man who took his wife and MIL on a safari? They were walking throught the thicket and turned around to find the MIL missing. They back tracked and when they found her she was face to face with a lion. The man's wife asked "what are you going to do?", to which the man replied "Nothing. The lion got himself into this mess, so let the lion get himself out." :p

pjoi4 12-02-2006 07:35 AM

Re: Just Frustrated and Confused
 
Conan thanks for the humor I needed that this morning. I actually laughed out loud.
When it rains, it pours and then it pours some more. Kim that country I am speaking of is Nigeria. I tried my best to make yesterday a great day! My husband seemed very elusive all day towards me. I have an appointment set for him to go and see his Onc on December 8 and they do not want to do any lab work like he was hoping until they see him in person. My hospice nurse delivered her sad news today for him saying that they could not perform the blood transfusion and my husband just made the statement that his nurse has given up on him. He said he did not want to go to get the transfusion there anyway because it was a Hospice place and not the hospital. Hospice actually offered to transport him there if the procedure could be done. He refused their offer stating that he would rather I drive him. He is very weak and has now lost his voice. We are waiting for some family friend to fly in from New York who use to be a school teacher (nothing against school teachers please) but has now decided to become a medical doctor five years ago. He told my husband he had just left a lung cancer Seminar and they have a lot of new developments and cures he wanted to share with him. My husband insisted I speak with this man and tell him about what is going on. When I started to tell him from start to finish my husband would stop me and tell me not to tell him that part or donít tell him what type of cancer. My husband had told this man that he lost a lot of weight and begged him to please come visit soon. He was begging this man as if he was going to be his savior. My husband kept asking how long will it be before he could reach here and the man just replied I try to get their soon maybe one day next week and for him to not worry that everything will be find until he arrives. Imagine that he does not even have a clue of my husbandís condition and that he is barely holding on by a thread. My husband does not even want to see his nurse anymore. He woke up in lots of pain today and barely breathing he tells me I am being mean to him. He says all I want is for him to take larazapim but he is not taking it because it makes him anxious and he is sick and tired of being made anxious. I am trying hard not to make him feel angry and do something stupid. He is already giving out some private information about the family and he now wants me to give away on paper one of our properties and he hopes I would not be upset. The people who are coming to visit are vultures and I have a feeling that everyone will be jocking for position. I am getting to a point where I am about to ban all visitors. I am waiting for him to become confined to the hospital bed. I just sit and watch him suffer a slow and agonizing death. He is in so much pain and refuses to take any meds to help with anything. He even complains when taking his base methadone for pain. I ask if I could call his nurse today. He ignored me and said all I do is leave the house. I canít stand being in my own home. There are so many people telling him that he will get better and beat this sickness there are so many people willing to sell him the snake oil. There are so many people calling to offer up their own advise from afar that donít even have a clue of his condition. I am so at a breaking point. I will try to go and visit with my priest tomorrow. Got to go I need to run to the store and make a couple of phone calls outside the house to my mom and Dr. who's flight was delayed all day yesterday.

God Bless All Today

Thank you all for your prayers and listening to me.

Renea

Kimslos 12-02-2006 08:51 AM

Re: Just Frustrated and Confused
 
Oh Renea,
I am numb after reading what you are going thru. It is just terrible what people are doing! If I understand correctly your husband wants to give property away to this person so he can save his life? I do hope that property is in both of your names. When my dad was dying of cancer he became very in and out of it at times and they told us it was because his calcium levels were very high. When the body starts shutting down the mind gets messed up for whatever reason. Just know your husband does not love you less and I believe his mom has him convinced he can beat this terrible disease. Oh, I hold onto a miracle everyday for Stan, but at the same time I am realistic too. I honestly think you need to call his Onc. on the sly and have a talk with him as to what you can do. Do you have a trust or anything set up? I am so sorry to hear what you are going thru when it already seemed so bad, it even got worse. I also hope the doctor that you were to pick up yesterday can make it in! I think he might be what you need at this point to shed some light on his condition. Oh Renea, you continue to stay strong and I will pray that somehow this mess will get sorted out! I hope the priest can help you sort out some issues too. I am praying for you Renea as it breaks my heart to imagine you are watching your husband fight this terrible disease and all the other nonsense mixed in!
Kim

gnik 12-02-2006 09:51 AM

Re: Just Frustrated and Confused
 
Oh my goodness. Bless your heart.

My husband died Wednesday, November 29. He was Stage IV nsclc and had been diagnosed October 22, 2005. He lived a year, one month and and a few days. He started going down about three weeks before he died and it was a pretty rapid decline. If he didn't want to eat he didn't and if he didn't want to drink he didn't. He died peacefully and thank God for hospice. They were wonderful and helped to make his passing peaceful. It seems that some people tend to look at what they want instead of what is best for the loved one. The time I spent with John during the dying process is something I will forever be grateful for. I wish your MIL would let him go.

Bless you.
linda

Kimslos 12-02-2006 10:00 AM

Re: Just Frustrated and Confused
 
Very well said Linda with tears flowing, thanks for sharing. I also thank you for coming back and checking on everyone! We were suppose to get a tree in a bit and we have always gone as a family...all 4 of us and just a couple of minutes ago my huband announced I must go with the boys alone that he cannot go. Oh, how it will break my heart to leave in a while without him, but we will pick a tree without him and respect his wishes as hard as it is. I have not yet gone upstairs to tell the boys we are doing it alone, without dad this year. Ok, I am getting emotional...need to run. But...wanted to thank you for your posting to Renea.
Prayers continuing for you,
Kim

pjoi4 12-02-2006 10:21 AM

Re: Just Frustrated and Confused
 
December 2, 2006

Thanks Kim and Linda for sharing. I am checking the board whenever I can to steal away a little sanity. I have two arrivals tomorrow of two doctors. One I know very well and trust who was supposed to come in on Friday. My husband also use to trust him very much as well. Now my husband has kicked him to the side. He is still coming because he grew up in the same house as my husband and disciplined them as their older brother. The other Doctor does not have a clue as to what he will be walking into. I am supposed to pick him up at 1:30am in the morning. As for the house my husband wants to place it in his mom's name so that she owns something in the U.S. When we found out my husband's condition back in October of last year before his biospy I made him get together a Will, Durable Power of Attorney, and Medical Directives signed by all the necessary parties at our church. I have placed all our information in a safe place. All property is jointly owned and I really wanted the focus to be on him and only him and now it is on what others can come and take. He had a big argument with his brother-in-law six months ago because he refuses to pay the rent on a leased property we own. Now that same in-law wants to come and make amends and I do not want him here because he had asked several times in the past if he could right the taxes off on a property he does not even own. He felt it was unfair for him to be paying that amount of rent and not be able to right of taxes. Now all of a sudden since he has found out my husband's condition he wants to come and make amends. My husband said that he had really hurt him six months ago and does not want to see him at all yet. I phoned my husband's nurse and she suggested I turne his oxygen up to level 4.5 and give him the antropine (spelling) morphine under his tongue to help with his labored breathing. Got to go now just received a phone call from the Doctor I don't know who said that he will be arriving tonight instead and will need to leave very early in the morning. I can already tell by the simple conversation we just had that I we wonít get along. I did not like his undertone. However the other Doctor the one I know will be coming in at the same time he is to leave. So tired no time to focus on my husband and his ordeal. I just told him of this news and he asked me what is he supposed to do now. He is always asking what should he be doing?

Thanks will write again later if I can.

Renea


All times are GMT -7. The time now is 10:49 PM.