New and tired!
After a PET scan it was found that he had cancer in his esophagus, thyroid, two lymph nodes and his right lung. They gave him "months" to live. So home we are, getting ready for radiation on Tuesday. The outlook is very grim and the only hope we have is that the mass will not rupture, his heart will not give out, his body can handle radiation...and he does not choke himself to death!
I am on day two of having him home. I am dealing quite will with the Peg tube feeding, giving him his meds via peg tube (sorry forgot to mention that he cannot eat or drink due to the trach and the fact that the mass in his esophagus does not allow anything past), suctioning, venting...etc., etc., etc...HOWEVER...I am finding it very difficult to keep this 64 year old man away from food and drink. I am about ready to toss every item I own into the trash! It does not matter how many times I tell him how dangerous food is to him. It does not matter how many times the nurse who comes to the house tells him how dangerous it is for him, he continues to eat! He is a little food thief who steals to eat in the bathroom! It is humorous and scary at the same time. All he can say about himself is can you blame me? Why is it that he wants so desperately to do the radiation to help prolong his short life, but takes chances eating? I know he is hungry. I know it takes time to get use to tube feeding. But to take the chance? Here is an idea of my night. We got home from the hospital. I went into his room to make up his hospital bed. While I was in there getting all of his stuff ready, he went to the kitchen and ate a tortilla scoop, which got stuck in his trach. I had to remove the outer piece to clear it. Scared the crap out of me!
I had to go through so much to allow him to be in my home for this ordeal. My siblings attempted to take legal action. They were more concerned about what we would do with him after his death, and I more concerned about the time he has left. I am so afraid that I will have to place him somewhere due to him wanting to eat. I am afraid I will loose him to something getting stuck where it should NOT be! I am just afraid, period. It is so funny that out of every thing I could be afraid of...out of all of his gadgets it is food that scares me!
Lord have mercy on the hungry!
I do understand that we must be sympathetic because it takes the body some time to get use to the formula and the stomach must shrink to the desired size...blah...blah (says the nurse). I also know that once he starts radiation, he will not want to eat...but that does not help.
Pardon the venting! It seems like this is the only place I can do so. It is just me and my dad and my dog. Yes, there is a 19 year old who can help (daughter), but she is afraid for him. Yet all of the family is North...so this is where I will vent.
I am getting winded, but it is feeling good to get out. I am a bit angry because I just finally got the Father I always wanted...after all of the hurt and anger...here he is! Only to loose him to this horrible disease. Sucks, loosing both parents to cancer! Funny, I just had a birthday and I feel as if I aged 10 years instead of 1.
So, how do caregivers go about making time for themselves? Oh, think I just did.
Thanks for the outlet!
Comments
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dads helper
hi my name is mary and caregiver to my husband joseph he has nscl lung cancer no surgery spread from right lung to chest wall now to left lung and spleen maybe bone and brain mestasites will do mri next week of brain to see it is so hard i am only caregeive and daughter 20 years old in college not much family to help sorry to hear about your dad and others dont wont to help what goes around will come around believe you me God will see to that just hang in there it is so hard be a caregiver gave up my job 2 monts agot to care for him he is terminal maybe 5 weeks left at this point wouldnt trade it for the world it is hard at times since hubby has colostomy and getting weaker and cant take care of it i have a nurses aid coming in next week on mon wed and fri to help with that the other days i will try to help him take care of it if not i will have a full time help 7 days a week to care a hour a day for him dont know who long i can do this it is so so hard but trying my best you hang inthere with your dad get help if you need it contact medicare or medicaid to help you keep in touch Mary0 -
Thanks for the reply Marymarybear said:dads helper
hi my name is mary and caregiver to my husband joseph he has nscl lung cancer no surgery spread from right lung to chest wall now to left lung and spleen maybe bone and brain mestasites will do mri next week of brain to see it is so hard i am only caregeive and daughter 20 years old in college not much family to help sorry to hear about your dad and others dont wont to help what goes around will come around believe you me God will see to that just hang in there it is so hard be a caregiver gave up my job 2 monts agot to care for him he is terminal maybe 5 weeks left at this point wouldnt trade it for the world it is hard at times since hubby has colostomy and getting weaker and cant take care of it i have a nurses aid coming in next week on mon wed and fri to help with that the other days i will try to help him take care of it if not i will have a full time help 7 days a week to care a hour a day for him dont know who long i can do this it is so so hard but trying my best you hang inthere with your dad get help if you need it contact medicare or medicaid to help you keep in touch Mary
Today is day 2 with Dad. I explained to him (again) the importance of no food or drink. He slept well last night, which is more than I can say for myself. However, I would not trade it for the world. I know I am doing the right thing. It will be hard, but I will survive! I guess my frustration is with the health care system. We tried a few months back for medicaid and medicare. We were denied. We are working with the VA at this point. It is crazy how slow they are. I sure hope they are much better for our guys and gals in the armed forces. We are going on round two for medicaid and medicare now. Hopefully it will come through and things will get better. My only fear is that it will come to late. The more each day comes, the worse the dementia gets.
I remember how difficult it was with my mother. She passed 17 years ago to Ovarian Cancer. Of course there were more of us there to help her, but it was still very hard. I hate to see him go through the same thing. I know what is ahead. Unfortunately/fortunately he forgot what path is ahead of him. Years of alcohol abuse has destroyed his memory and I do not have the heart to tell him the truth. Only that it is a long tough road. It is sad, but I can only hope that his heart will give out before the cancer takes him. I have been told by the doctors that this will be a very painful death. I can only hope that I give him as much comfort as possible.
I have been told by the hospital/nurses/and VA that his care is way beyond what someone can do in the home. He has so many things going against him that he should be in a skilled facility. I cannot bare to think of him there. He would give up. I only want him to enjoy what time he has left. But, I guess the crazy thing is the fact that we do not qualify for hospice. Since he will be getting radiation, he does not qualify. Even though the radiation is to help him with his trach, and not to prolong his life. But, I do understand...I guess.
Life is funny huh? When it throws you lemons, you make lemonaide...although sometimes I would rather throw the lemons right back at them.
My family (as many others) have suffered too much. I have had cancer, my sister is also a survivor. Lost my grandfather and mother to it and now my father.
I know they say god only gives you what you can handle...but I feel that he/she is not paying attention from time to time. Guess everyone sleeps on the job periodically right?
I guess my siblings are the most disappointing out of all of this. They do not call and then get mad if I do not keep them updated every day. Lord give me strength!0 -
new and tired
hi hope all is well i know what you are going through dedcided to due one more month of tarceva dont know if it will help but going to do it is a once a day chemo pill so he cant get hospice either if he gets worse i will call 911 if he cant breathe and put him in the hospital where i know they will take care of him you are right funny how life is you take care of your whole family and now cant enjoy life at all god takes it away from you what a shame dont know the meaning of it but have to go along with the plan God only gives us what we can take so they say i hope he intervenes soon because it it toto much to handle alone on my shoulders but will do as long as i can thanks for replying talk to you soon good luck with dad my prayers are with both of you Mary0 -
I am enjoying our conversationsmarybear said:new and tired
hi hope all is well i know what you are going through dedcided to due one more month of tarceva dont know if it will help but going to do it is a once a day chemo pill so he cant get hospice either if he gets worse i will call 911 if he cant breathe and put him in the hospital where i know they will take care of him you are right funny how life is you take care of your whole family and now cant enjoy life at all god takes it away from you what a shame dont know the meaning of it but have to go along with the plan God only gives us what we can take so they say i hope he intervenes soon because it it toto much to handle alone on my shoulders but will do as long as i can thanks for replying talk to you soon good luck with dad my prayers are with both of you Mary
This is giving me the strength needed...or at least the strength to go through one more moment, because that is what it is...one moment at a time. Yesterday (Sunday) was the most stressful that I have had. I spent the entire day chasing Dad around. I have never been so exhausted in my entire life. I really felt as if I had failed him. I did not sleep...I did not eat...I barely went to the bathroom. Every time I did something (like go to the bathroom) Dad went to the fridge for food. At one point I found a frozed Hot Pocket in his pants. I then put it in the trash, only to find him pulling it back out at when I let the dog outside. He has gotten down right rotten to me and then so sorry when I am crying. But, then he turns around and does it again. At this point, I could not hire someone even if I wanted to. There is no amount of money in the world that would keep someone here with the behavior he is displaying.
I feel bad, but this is my only outlet. I am sure that a majority of his actions are dementia related. Such a shame and so sad that both need to be prevelant during such a time. What, cancer is not enough?
I have contacted the visiting nurses to find out what my other options are. Being with the VA is horrible. I am running out of food for him, meds for him, supplies for him. I literaly have about 12 hours of supplies left. Plus, I had about 2 hours of sleep since I brought him home from the hospital. The visiting nurses are going to see if the VA will approve something to assist me during the day, or to assist me period. But my hopes are not up due to the fact that I am still waiting for meds and what nots!
Today we go to our first appointment with the radiation doctor. I guess we will find out what the game plan is for dad and his therapy.
I feel the same way you are feeling. It is horrible the way our health system is you know? But, we will have to do what we need to do. Right?
My thoughts are with you and your family.
Thanks for the response. It is nice to know that there are others!
Cindy0 -
Been Theredads helper said:I am enjoying our conversations
This is giving me the strength needed...or at least the strength to go through one more moment, because that is what it is...one moment at a time. Yesterday (Sunday) was the most stressful that I have had. I spent the entire day chasing Dad around. I have never been so exhausted in my entire life. I really felt as if I had failed him. I did not sleep...I did not eat...I barely went to the bathroom. Every time I did something (like go to the bathroom) Dad went to the fridge for food. At one point I found a frozed Hot Pocket in his pants. I then put it in the trash, only to find him pulling it back out at when I let the dog outside. He has gotten down right rotten to me and then so sorry when I am crying. But, then he turns around and does it again. At this point, I could not hire someone even if I wanted to. There is no amount of money in the world that would keep someone here with the behavior he is displaying.
I feel bad, but this is my only outlet. I am sure that a majority of his actions are dementia related. Such a shame and so sad that both need to be prevelant during such a time. What, cancer is not enough?
I have contacted the visiting nurses to find out what my other options are. Being with the VA is horrible. I am running out of food for him, meds for him, supplies for him. I literaly have about 12 hours of supplies left. Plus, I had about 2 hours of sleep since I brought him home from the hospital. The visiting nurses are going to see if the VA will approve something to assist me during the day, or to assist me period. But my hopes are not up due to the fact that I am still waiting for meds and what nots!
Today we go to our first appointment with the radiation doctor. I guess we will find out what the game plan is for dad and his therapy.
I feel the same way you are feeling. It is horrible the way our health system is you know? But, we will have to do what we need to do. Right?
My thoughts are with you and your family.
Thanks for the response. It is nice to know that there are others!
Cindy
Cindy,
I cannot give a big response now (at work) but please know your father is not acting like himself. My father also "lost it" and got very nasty. I too was exhausted taking care of Dad. The memories of the nastiness fade, and you will be thankful you were there. It is all a part of the cancer. The dementia is very hard to watch - and take.
Duke's kid0 -
Dad Updatedukeskid said:Been There
Cindy,
I cannot give a big response now (at work) but please know your father is not acting like himself. My father also "lost it" and got very nasty. I too was exhausted taking care of Dad. The memories of the nastiness fade, and you will be thankful you were there. It is all a part of the cancer. The dementia is very hard to watch - and take.
Duke's kid
Well, it has been a while since I posted. God knows it feels like ages. I am exhausted. I started going back to work when I can. Since my last post, Dad has had 8 radiation treatments and one chemo treatment. Tomorrow he will go for his second chemo treatment. I am noticing that it is getting harder and harder to clean out his trach. I am going to assume that it is because the mass is growing, or that there is swelling.
We have had to reschedule the proceedure for Dad's port three times. Tomorrow will be the 4th appointment to put it in. Each time, he has eaten and that has prevented the proceedure to happen. At this point, I am a bit uncomfortable because the doctor prescribed a sedative. He wants me to keep Dad sedated as much as possible. I am very uncomfortable doing this. If he needs sedation, why would they not put him in the hospital?
I watch him loose weight, I watch him forget where he is or who I am and I try my very best to keep it together. There are some days that are better than others. I am trying my very best to find quiet time. I use to think that it would be after he goes to bed. But trying to get him to bed is like waiting on a 2 year old who had chocolate all day long...bouncing off walls! I feel a bit lost and confused but know I am doing what is best at this time.
As you said. Cancer is ugly and I am learning that. Dementia is becoming it's ugly twin!!
Cindy0 -
Helpling dadsdads helper said:Dad Update
Well, it has been a while since I posted. God knows it feels like ages. I am exhausted. I started going back to work when I can. Since my last post, Dad has had 8 radiation treatments and one chemo treatment. Tomorrow he will go for his second chemo treatment. I am noticing that it is getting harder and harder to clean out his trach. I am going to assume that it is because the mass is growing, or that there is swelling.
We have had to reschedule the proceedure for Dad's port three times. Tomorrow will be the 4th appointment to put it in. Each time, he has eaten and that has prevented the proceedure to happen. At this point, I am a bit uncomfortable because the doctor prescribed a sedative. He wants me to keep Dad sedated as much as possible. I am very uncomfortable doing this. If he needs sedation, why would they not put him in the hospital?
I watch him loose weight, I watch him forget where he is or who I am and I try my very best to keep it together. There are some days that are better than others. I am trying my very best to find quiet time. I use to think that it would be after he goes to bed. But trying to get him to bed is like waiting on a 2 year old who had chocolate all day long...bouncing off walls! I feel a bit lost and confused but know I am doing what is best at this time.
As you said. Cancer is ugly and I am learning that. Dementia is becoming it's ugly twin!!
Cindy
Hi Cindy,
I also take care of my dad. My mom is the primary caregiver.
It is a struggle lots of time. It overwhelms and takes over everything else, but it is the mental tiredness of losing and see him in, and seing his pain and depression that hurts the most.
I also have two siblings, and other than phone calls. I dont get much of the help. My father was also an alcoholic. When he was really sick from another illness in the past, I fought very hard for him not to be placed in a nursing home (he hated it there) when we had to place him to rehab to start walking again. But I know when the end comes that we, my mom and I had done as much as we can. And that no one else can give him better care than us.
I'm sure you will feel the same. As to your siblings, they might wonder later on when he is gone. But you, you will have the satisfaction of the memories and warmth you had given your dying father.
Just one thing, do you have power of attorney over him?
I'm just bringing that up because you want to protect him and yourself in case you come up with problems with other family members. Take good care of your father and yourself. Blessings.0 -
P.O.Adell3 said:Helpling dads
Hi Cindy,
I also take care of my dad. My mom is the primary caregiver.
It is a struggle lots of time. It overwhelms and takes over everything else, but it is the mental tiredness of losing and see him in, and seing his pain and depression that hurts the most.
I also have two siblings, and other than phone calls. I dont get much of the help. My father was also an alcoholic. When he was really sick from another illness in the past, I fought very hard for him not to be placed in a nursing home (he hated it there) when we had to place him to rehab to start walking again. But I know when the end comes that we, my mom and I had done as much as we can. And that no one else can give him better care than us.
I'm sure you will feel the same. As to your siblings, they might wonder later on when he is gone. But you, you will have the satisfaction of the memories and warmth you had given your dying father.
Just one thing, do you have power of attorney over him?
I'm just bringing that up because you want to protect him and yourself in case you come up with problems with other family members. Take good care of your father and yourself. Blessings.
Thank you for your response dell. It sounds as if you and I are in similar boats. Although it seems as if it is a boat to nowhere. Yes, I do have medical and financial power of attorney. The only thing that I do not have is executor of his estate/will. But he is insistant that he changes that.
I guess the one thing that really bothers me is the fact that my siblings insisted that I was taking them away from him, but yet since he has been here (September 28th) and they have not called one time. To me that is just outragous! I cannot fathom it in my little pea brain. My siblings are just full of anger. My sister stated in an email that she is angry because she remembers my father trying to push a TV on her. Of course he missed. My brother states nothing except that my dad owes him money. Me, I was the lucky one who got beat daily! But I guess some folks cannot move on or forget! They could at least contact me to see how I am handling things, but they don't. It is just me and my daughter taking care of him with no other help and frankly sometimes it would be nice to know that someone in my family cares!
My father's siblings keep in touch with me and that is a big help. As a matter of fact one of them stopped by on their way to Florida. (My family is in either PA or FL). So, that was great!
I guess my point is...family should stick together.
I pray for myself, my father, you and others like us!
cindy0 -
sticking my nose indads helper said:P.O.A
Thank you for your response dell. It sounds as if you and I are in similar boats. Although it seems as if it is a boat to nowhere. Yes, I do have medical and financial power of attorney. The only thing that I do not have is executor of his estate/will. But he is insistant that he changes that.
I guess the one thing that really bothers me is the fact that my siblings insisted that I was taking them away from him, but yet since he has been here (September 28th) and they have not called one time. To me that is just outragous! I cannot fathom it in my little pea brain. My siblings are just full of anger. My sister stated in an email that she is angry because she remembers my father trying to push a TV on her. Of course he missed. My brother states nothing except that my dad owes him money. Me, I was the lucky one who got beat daily! But I guess some folks cannot move on or forget! They could at least contact me to see how I am handling things, but they don't. It is just me and my daughter taking care of him with no other help and frankly sometimes it would be nice to know that someone in my family cares!
My father's siblings keep in touch with me and that is a big help. As a matter of fact one of them stopped by on their way to Florida. (My family is in either PA or FL). So, that was great!
I guess my point is...family should stick together.
I pray for myself, my father, you and others like us!
cindy
I don't know why I am sticking my nose into this, as I think it is best to let families sort it out. I am the oldest of six kids, and my mom died of cancer, and we went through a lot afterward.
I am not sure that I can add anything positive here, but I would suggest that this is not a time to be splitting hairs and trying to work out old grievances. Yes, dad was an alcoholic, yes, dad was apparently abusive, as you say. And yes, the other kids are rightfully resentful and reticent to get involved. I don't blame them, I really don't.
But I salute you for blowing that off and taking the initiative and caring for the old guy.
The others should probably realize at some point that alcoholism is a disease, just as cancer is, and that their chances to make amends with dad are passing by quickly. More importanly, probably, they are robbing him of that chance with them!
Hang in there, sweetness, and do what you feel is right.
Do not forget that it is important that caregivers care for themselves. Be sure that you are taking care of you!
I wish you and your dad and your entire family the very best.
Take care,
Joe0 -
I try my very best to go tosoccerfreaks said:sticking my nose in
I don't know why I am sticking my nose into this, as I think it is best to let families sort it out. I am the oldest of six kids, and my mom died of cancer, and we went through a lot afterward.
I am not sure that I can add anything positive here, but I would suggest that this is not a time to be splitting hairs and trying to work out old grievances. Yes, dad was an alcoholic, yes, dad was apparently abusive, as you say. And yes, the other kids are rightfully resentful and reticent to get involved. I don't blame them, I really don't.
But I salute you for blowing that off and taking the initiative and caring for the old guy.
The others should probably realize at some point that alcoholism is a disease, just as cancer is, and that their chances to make amends with dad are passing by quickly. More importanly, probably, they are robbing him of that chance with them!
Hang in there, sweetness, and do what you feel is right.
Do not forget that it is important that caregivers care for themselves. Be sure that you are taking care of you!
I wish you and your dad and your entire family the very best.
Take care,
Joe
I try my very best to go to bed each night and ask if my mother would be proud of me. We lost her to ovarian cancer in 92. Each night I say to myself that she would be. As long as I continue down that road, I will be fine.
I make sure that regardless if my siblings speak to me or not, they are updated atleast every other day. That is the right thing to do. They do not return my calls, so I make sure I send them email updates.
Unfortunately, they need to remember (as I do) that the man I am caring for is not the same man. My father has been sober since February. That is the hard part, because with his dementia he lives in the past and each day he wakes is his first day of being sober. But we get through it.
It is hard (as a caregiver) to care for yourself. I have my own health issues and try my best to take time when it is needed. Sometimes that does not happen for days, but i do what I can.
Thanks for the response. Thanks for putting your nose in it. It is helpful!
Cindy0 -
new and tired
Sorry things arent going well for you with your family wish they would oome to there senses before it is too late saying prayers for you and your daughter being a caregiver is so hard i am to my husband and my daughter helps with docotor appointments but i bath him and dress him and help him with his colostomoy changing it is very hard work i do take care of myself i go out for walks with my dogs just to get fresh air try to get hubby outside when it is sunny and not to cold for fresh air also trying to enjoy the time we have together it is hard sometimes but God will help you get through this i am sure he may even get through to your siblings someday hang in there will keep in touch Mary0 -
so sorry
dads helper--
Gee where to begin I am sorry you are going through this you sound like myslef about 3 months ago. But continue to stay strong and believe you are doing what is best and what you believe in. I tried so hard to get mom to move in with me but she wouldnt she didnt want to put me through that she said. I guess now I am happy in a way beacause i have been having such a terrible time and if she had lived with me i dont think i would be able to stay in my house nowing this was her last spot but some can do it and i was willing to move in with her if she wouldnt stay with me. but luckily she was able to do for herself up until 3 days before then she made us put her in a home. So i guess i understand your family views on that becasue mine tried to tell me the same but i was addimont that i wanted her with me at first.
I lost my mom on Aug 18th after a year and half she went through raditaion first, surgery , then chemo when cancer came back 3 months after major surgery after chemo wasnt working we stopped all treatments and just let her live the rest out. They would never tell us how long she had at first but once cancer came back second time they said didnt look good gave her less then 6 mo. once she stopped radiation thats when hopsice was able to come in and help sadly she only had hospice for 2 months but they were the greatest help. So keep that in mind for when you need them.
Your doctors in oncology should be able to give you some numbers or try calling ACS and ask for other support they have volunteers that will come and sit to give you time even 1 hour for shopping. try calling a rehab commition they have help they got my mom a home cleaning service. They say there isnt much help but they arent willing to give you the info. I called ACS so many times to get differnt numbers in my state as they all kept telling me there was no hlep for my mom and i had to do it all myself(with 4 kids and a husband) My sibling was working and i understood she couldnt be there evryday who can take time of work and still survive right.. thank goodness my hubby was the breadwinner and i was able to take care of mom the rest of the fmaily sucked wanted updates constantly like i got nothing better to do then talk on phone with them because there to lazy to come and help or cant be bothered to take time away from what they want, Dont worry about them and what you should do and dont do because of them. You do what you feel is right hes your dad and YOU will feel better when its all done that you did the right thing and can have those memories that noone else can take from you but they will want someday they will say they are sorry becasue they missed out. I hear it today and i just look at them and say cant change it learn from it.
as for dad eating too funny i now its not good for them and there not suppose to do that my mom had trache in during first surgery only for 2-3 months they took it out she was able to eat again after about 3 months and getting her taste buds back and feeling was the best thing she was so excited when they finally had to put tube back in to ease the swelling and breathing she hated it.. wasnt able to talk or eat but towrds the end she was so upset that she started eating soft foods again (pudding. icecream. chocolate, drinking liquids, potaotoes) we told doctors and nurses they told her over and over again dont do it gonna end up in lungs with nemonia or choke but she just wanted to eat i wasnt gonna argue with her on her last days /months so i let her be i would remind her every so often dont do it so she new i was scared. and finally she stopped on her own think it got to hard for her to eat unless she almost chocked and didnt want to tell me
. I wanted to empty out her cabinets and everything but i wanted her to be happy on what she had left. I now its hard and you dont want him to do it but if it makes him happy just let him be and remind him its not good and can hurt him i now its hard but maybe it will help you to know he was happy.
Best luck to you I hope i helped just wanted to give my ideas and thoughts0 -
Continuing the roadhunpot said:so sorry
dads helper--
Gee where to begin I am sorry you are going through this you sound like myslef about 3 months ago. But continue to stay strong and believe you are doing what is best and what you believe in. I tried so hard to get mom to move in with me but she wouldnt she didnt want to put me through that she said. I guess now I am happy in a way beacause i have been having such a terrible time and if she had lived with me i dont think i would be able to stay in my house nowing this was her last spot but some can do it and i was willing to move in with her if she wouldnt stay with me. but luckily she was able to do for herself up until 3 days before then she made us put her in a home. So i guess i understand your family views on that becasue mine tried to tell me the same but i was addimont that i wanted her with me at first.
I lost my mom on Aug 18th after a year and half she went through raditaion first, surgery , then chemo when cancer came back 3 months after major surgery after chemo wasnt working we stopped all treatments and just let her live the rest out. They would never tell us how long she had at first but once cancer came back second time they said didnt look good gave her less then 6 mo. once she stopped radiation thats when hopsice was able to come in and help sadly she only had hospice for 2 months but they were the greatest help. So keep that in mind for when you need them.
Your doctors in oncology should be able to give you some numbers or try calling ACS and ask for other support they have volunteers that will come and sit to give you time even 1 hour for shopping. try calling a rehab commition they have help they got my mom a home cleaning service. They say there isnt much help but they arent willing to give you the info. I called ACS so many times to get differnt numbers in my state as they all kept telling me there was no hlep for my mom and i had to do it all myself(with 4 kids and a husband) My sibling was working and i understood she couldnt be there evryday who can take time of work and still survive right.. thank goodness my hubby was the breadwinner and i was able to take care of mom the rest of the fmaily sucked wanted updates constantly like i got nothing better to do then talk on phone with them because there to lazy to come and help or cant be bothered to take time away from what they want, Dont worry about them and what you should do and dont do because of them. You do what you feel is right hes your dad and YOU will feel better when its all done that you did the right thing and can have those memories that noone else can take from you but they will want someday they will say they are sorry becasue they missed out. I hear it today and i just look at them and say cant change it learn from it.
as for dad eating too funny i now its not good for them and there not suppose to do that my mom had trache in during first surgery only for 2-3 months they took it out she was able to eat again after about 3 months and getting her taste buds back and feeling was the best thing she was so excited when they finally had to put tube back in to ease the swelling and breathing she hated it.. wasnt able to talk or eat but towrds the end she was so upset that she started eating soft foods again (pudding. icecream. chocolate, drinking liquids, potaotoes) we told doctors and nurses they told her over and over again dont do it gonna end up in lungs with nemonia or choke but she just wanted to eat i wasnt gonna argue with her on her last days /months so i let her be i would remind her every so often dont do it so she new i was scared. and finally she stopped on her own think it got to hard for her to eat unless she almost chocked and didnt want to tell me. I wanted to empty out her cabinets and everything but i wanted her to be happy on what she had left. I now its hard and you dont want him to do it but if it makes him happy just let him be and remind him its not good and can hurt him i now its hard but maybe it will help you to know he was happy.
Best luck to you I hope i helped just wanted to give my ideas and thoughts
Well, today is a new day. Dad was at the Durham VA hospital for the last 2 days due to bleeding in his trach. It was caused mostly due to his eating, which he refuses to do. However, he has made the decision to stop radiation and chemo, which I support. I had every intention of keeping him in the hospital for placement due to his mind slowly going. The other night he almost started the kitchen on fire. Plus he is becoming very hostile and it is no longer a safe environment for him. I can no longer provide the care he needs here at home. So, I told the doctors that that was my decision. However, the contacted me today letting me know that it would be two weeks before he could be placed and they wanted him to come home until then. I went to the hospital to speak with him, and before even telling him our options, he told me that he would cooperate with me, and that realizing he is dying made him realize that he was doing wrong by me and all he wanted to do was be with me and be happy. Of course I believed him and the fact that he made many promises and I allowed him to come home. Now, having said that, you need to know that the day before I told him he would have to stay in the hospital and he became violent towards me. Nothing serious because he does not have the energy for it, but he grabbed me just the same. But I believed that he was true to his word, and I changed my mind and brought him home. So, when he got home, he immediately went to the fridge and ate. He then refused to go on his breathing machine and be fed. As I am writing this, I am thinking to myself, maybe he should just do what he wants so he is happy...
Thoughts?0 -
his waydads helper said:Continuing the road
Well, today is a new day. Dad was at the Durham VA hospital for the last 2 days due to bleeding in his trach. It was caused mostly due to his eating, which he refuses to do. However, he has made the decision to stop radiation and chemo, which I support. I had every intention of keeping him in the hospital for placement due to his mind slowly going. The other night he almost started the kitchen on fire. Plus he is becoming very hostile and it is no longer a safe environment for him. I can no longer provide the care he needs here at home. So, I told the doctors that that was my decision. However, the contacted me today letting me know that it would be two weeks before he could be placed and they wanted him to come home until then. I went to the hospital to speak with him, and before even telling him our options, he told me that he would cooperate with me, and that realizing he is dying made him realize that he was doing wrong by me and all he wanted to do was be with me and be happy. Of course I believed him and the fact that he made many promises and I allowed him to come home. Now, having said that, you need to know that the day before I told him he would have to stay in the hospital and he became violent towards me. Nothing serious because he does not have the energy for it, but he grabbed me just the same. But I believed that he was true to his word, and I changed my mind and brought him home. So, when he got home, he immediately went to the fridge and ate. He then refused to go on his breathing machine and be fed. As I am writing this, I am thinking to myself, maybe he should just do what he wants so he is happy...
Thoughts?
my opinion is its just your dads way of coping with his illness and you are probably right let him just be happy, He is probably feeling many different things now especially seeing he has decided to stop treatments. Once stop treatments you can get Hospice involved I suggest you do that ASAP they will come to your home or wherever he is(even in hospital,) they are great supporters (many different services to offer) for yourself and him as well as he may feel comfortable opening up to someone not so close(as my mom would tell her nurses things that she didnt want us daughters to be upset about, she could express her thoughts and ease her mind) it helped her feel easy in the end.
Another advice i can give is the doctors telling you that you had to take him home till they had an opening is B.S.. They pulled that on me twice I didnt let them get away with it as i felt strongly she was very unsafe to be home. If you feel that it is unsafe and the doctors verify that it is unsafe and dangerous for him to be home they cannot ask you to take him home you tell them "NO" and refuse to sign him out. Plain and simple they will find him somewhere to go they have no choice see what they find then. I know its hard and you dont want to do that you fell ike your doing wrong to him but it works or did in my case. GOOD LUCK0 -
Well, the last few days ofhunpot said:his way
my opinion is its just your dads way of coping with his illness and you are probably right let him just be happy, He is probably feeling many different things now especially seeing he has decided to stop treatments. Once stop treatments you can get Hospice involved I suggest you do that ASAP they will come to your home or wherever he is(even in hospital,) they are great supporters (many different services to offer) for yourself and him as well as he may feel comfortable opening up to someone not so close(as my mom would tell her nurses things that she didnt want us daughters to be upset about, she could express her thoughts and ease her mind) it helped her feel easy in the end.
Another advice i can give is the doctors telling you that you had to take him home till they had an opening is B.S.. They pulled that on me twice I didnt let them get away with it as i felt strongly she was very unsafe to be home. If you feel that it is unsafe and the doctors verify that it is unsafe and dangerous for him to be home they cannot ask you to take him home you tell them "NO" and refuse to sign him out. Plain and simple they will find him somewhere to go they have no choice see what they find then. I know its hard and you dont want to do that you fell ike your doing wrong to him but it works or did in my case. GOOD LUCK
Well, the last few days of him being at home have been pretty uneventful...sort of. He has slept most of it. All day Saturday he slept, and just woke up (Sunday) and is back asleep. This (I expect) is normal. Hospice is coming on Monday for him. His Trach is bleeding again. I know he is suppose to be in his room with the humidity, but he refuses to go in there. Plus I know I am not a doctor, but if it was lack of humidity causing the bleeding why does he have so much secretions?
The entire situation is just hard, period. I get angry and sad...sometimes at the same time, but we are getting through it. Last night my boyfriend picked me up and took me to an auction for 40 minutes. It was great to get away! I think that may be the first time since Dad came home in September.
I look at him and I worry so much. He doesn't look good. His eyes...they are blank. The doctors started him back on his antidepressants. I am hoping that is what is doing it. But I do not recall this happening last time he was on them. However, it is a different ball game now.
We hired a nurse that is going to come in and sit with him while I work...just a few days a week. I wish I could afford to be off, but no use crying over spilled milk right? I will make due with what I have and do the best that I can. That is all anyone can do.0 -
Mom slept alot the last weekdads helper said:Well, the last few days of
Well, the last few days of him being at home have been pretty uneventful...sort of. He has slept most of it. All day Saturday he slept, and just woke up (Sunday) and is back asleep. This (I expect) is normal. Hospice is coming on Monday for him. His Trach is bleeding again. I know he is suppose to be in his room with the humidity, but he refuses to go in there. Plus I know I am not a doctor, but if it was lack of humidity causing the bleeding why does he have so much secretions?
The entire situation is just hard, period. I get angry and sad...sometimes at the same time, but we are getting through it. Last night my boyfriend picked me up and took me to an auction for 40 minutes. It was great to get away! I think that may be the first time since Dad came home in September.
I look at him and I worry so much. He doesn't look good. His eyes...they are blank. The doctors started him back on his antidepressants. I am hoping that is what is doing it. But I do not recall this happening last time he was on them. However, it is a different ball game now.
We hired a nurse that is going to come in and sit with him while I work...just a few days a week. I wish I could afford to be off, but no use crying over spilled milk right? I will make due with what I have and do the best that I can. That is all anyone can do.
Mom slept alot the last week also she was on antidepressents only for a bit she refused to take them they made her very sleepy so she stopped all she was on was the morphine that took the pain and angony away and didnt make her sleepy they will probably most definately order that monday bet it will be the first they order. Hospice was great getting her the right meds, but she new what to take and what made her feel right or wrong, i hope you can work that out with your dad but i do know those anti's make you very sleepy maybe try giving him just half instead of a whole might keep him awake a bit more.
Hopsice will help they have volunteers that will come in everyday for a few hours to give you a break i had three of them out of the week they would come in for anywhere from 2-6 hours they worked with what i needed they were tremendous and the good thing is most of them had been through this so it was great to have someone to talk to and give me support and let me know what to expect. your emotions are normal and it is okay to feel that way i still am angry and very sad. Its great to get away when you can even for 20 minutes but when you do it seems as though you feel bad cus you left and are just worried whats going on and if all is okay but deep down you need the time away to just breathe and its worth it.
That was the worst for mom was the secretions she hated cleaning that trache it was litterally every two seconds cough and flem coming up was horrible to see her have to clean it so much, they had her on a liquid to keep them clear and thin to make it easy to get up, but they also have a med to dry them out if it gets to be too much for them to cough up. That was amjor concern of moms was that she wouldnt be able to get them up and choke. they reassured her every day that would not happen.
It is very very hard and difficult i know how you feel. Make do with what you have is all you can do i worked nights sat with mom all day till night then we had a friend come in and sit or my sister woud com relieve me she worked days. It was alot of my time but i wouldnt change it and i know i did all i could and i got to spend the most time with her and in the end thats what counts for me anyway. I also know some insurance companys will pay for private nursing so give your dads a call and ask save you oney.(which we all need) I wish you were close i would help you i feel terrible you have to go through this its all still so new in my mind Just keep praying and try to stay strong. GOD BLESS 0 -
Thank you so much for yourhunpot said:Mom slept alot the last week
Mom slept alot the last week also she was on antidepressents only for a bit she refused to take them they made her very sleepy so she stopped all she was on was the morphine that took the pain and angony away and didnt make her sleepy they will probably most definately order that monday bet it will be the first they order. Hospice was great getting her the right meds, but she new what to take and what made her feel right or wrong, i hope you can work that out with your dad but i do know those anti's make you very sleepy maybe try giving him just half instead of a whole might keep him awake a bit more.
Hopsice will help they have volunteers that will come in everyday for a few hours to give you a break i had three of them out of the week they would come in for anywhere from 2-6 hours they worked with what i needed they were tremendous and the good thing is most of them had been through this so it was great to have someone to talk to and give me support and let me know what to expect. your emotions are normal and it is okay to feel that way i still am angry and very sad. Its great to get away when you can even for 20 minutes but when you do it seems as though you feel bad cus you left and are just worried whats going on and if all is okay but deep down you need the time away to just breathe and its worth it.
That was the worst for mom was the secretions she hated cleaning that trache it was litterally every two seconds cough and flem coming up was horrible to see her have to clean it so much, they had her on a liquid to keep them clear and thin to make it easy to get up, but they also have a med to dry them out if it gets to be too much for them to cough up. That was amjor concern of moms was that she wouldnt be able to get them up and choke. they reassured her every day that would not happen.
It is very very hard and difficult i know how you feel. Make do with what you have is all you can do i worked nights sat with mom all day till night then we had a friend come in and sit or my sister woud com relieve me she worked days. It was alot of my time but i wouldnt change it and i know i did all i could and i got to spend the most time with her and in the end thats what counts for me anyway. I also know some insurance companys will pay for private nursing so give your dads a call and ask save you oney.(which we all need) I wish you were close i would help you i feel terrible you have to go through this its all still so new in my mind Just keep praying and try to stay strong. GOD BLESS
Thank you so much for your responses. It really helps! It is tough going through it, but I know I will survive like many others did.
I have noticed at night that dad is turning off his portable air compressor. It seems like he has given up. I know that is part of it. Maybe God will be nice to him.
I have hired a nurse (cna) to come in a few days during the week so I can continue to work. I hate the fact that I have to work, but with mine being the only income and knowing we need the money, I do not have much of a choice. I do what I can, with what I have.
Dad is on all of those secretion meds too. They do not seem to help much. He is also on duonebs which do not seem to help much either.
Today is the first day that he has not gotten out of bed before me. But, if rest is what he needs, then that is what he is getting. I know he has a long, hard journey to make. One that is much more difficult than the one I am taking. He equally (if not more) needs the rest.
Each day is a challenge, bringing new adventures. Today is another day. Tomorrow is not far away. Each breath is more precious than the last. Those are the thoughts that go through my mind.0 -
I hated leaving mom at nightdads helper said:Thank you so much for your
Thank you so much for your responses. It really helps! It is tough going through it, but I know I will survive like many others did.
I have noticed at night that dad is turning off his portable air compressor. It seems like he has given up. I know that is part of it. Maybe God will be nice to him.
I have hired a nurse (cna) to come in a few days during the week so I can continue to work. I hate the fact that I have to work, but with mine being the only income and knowing we need the money, I do not have much of a choice. I do what I can, with what I have.
Dad is on all of those secretion meds too. They do not seem to help much. He is also on duonebs which do not seem to help much either.
Today is the first day that he has not gotten out of bed before me. But, if rest is what he needs, then that is what he is getting. I know he has a long, hard journey to make. One that is much more difficult than the one I am taking. He equally (if not more) needs the rest.
Each day is a challenge, bringing new adventures. Today is another day. Tomorrow is not far away. Each breath is more precious than the last. Those are the thoughts that go through my mind.
I hated leaving mom at night she even hated it, i always saw the look in her eyes when i had to leave but she new i had to survive also and make money. Even though it hurts we have to do what we can for ourselves because they wouldnt want us to fall behind becasue of them.
I think they get tired of having to do everything meds, machines, and just want to be able to do nothing adn think they will be okay. Somehow i believe god is good because he knows what they have to endure so i believe he will make it easy for them or at least hope:)
It does seem those meds dont help and make it worse and the duonebs well those made mom fell better even though i didnt see a difference. I guess they are thoe ones that really now what works and dont. She only used her oxygen like maybe once a day she always said it didnt work. That was the major thing that got me mad and upset(and probably becasue i thought it would keep her around alonger who knows) my mind was crazy with thoughts.
Rest is a good thing. You are thinking wise and staying strong that is good for you now. Maybe try asking him if hed like to get up and take a small walk even if its just to get some air to the front door tell him you will help him and hold him if need be just show him you are there for him. Will make him feel great hell probably refuse but keep asuring him you are there and want to help.
Each day is challenging you are right and even after im still taking day by day and this forum helps alot. Life is precious and we cant take it for granted one bit once we have all gone through this terrible ordeal makes our lives more open to life and reality. live love learn.
TRACY0 -
new and tired
All my love to both dads helper and honpot posted on this site last month checking in so sorry for what you are going trough i am going through the same with hubby stage4 nscl terminal no surgery found out june13 after so many test the exray showed the large tumor after ct scan and pet scan in july it spread to lymoph nodes in chest and left lung now did one chemo almost killed him no more chemo now on tarceva for 2 months dont know ifit is helping will do catscan again end of month this is his last option been caring for him since 9/9/08 had to quit my job when he came home from hospital that day been in and out for two months.have to be there to help him cant walk to good by himself since 1st chemo got neurapthy of the feet never the same uses a walker to get around have to help him dress and undress give him his med and help with his colostomy bag changing it 2 times a day very hard to do the visiting nurse has stopped coming once a week says she cant since this is custodial care cant afford a nurse everyday yet he is getting more tired sleep alot needs ambien at night to sleep, try to get him outside if not raining for a hour to get fresh air yesterday pushed around in the transport chair for a hour to see the neightborhood. he now trouble breathing when he walks from bedroom to kitchen or bathroom told oncologist this on friday will see oncologist on wed he may need to go back into the hospital keeping him home as long as i can we have a 20 year old daughter who goes to college 3 days a week she takes us to doctor appts on mondays and fridays i want her to enjoy her weekends also and go out this is so said for her since we were told he wont last the year hope god is listening and makes it easier for us and him hope he has no pain very hard on caregivers just wanted to say hi and say god bless to you both for what you are doing keep up your spirits and posting will keep in touch mary0 -
Children learnmarybear said:new and tired
All my love to both dads helper and honpot posted on this site last month checking in so sorry for what you are going trough i am going through the same with hubby stage4 nscl terminal no surgery found out june13 after so many test the exray showed the large tumor after ct scan and pet scan in july it spread to lymoph nodes in chest and left lung now did one chemo almost killed him no more chemo now on tarceva for 2 months dont know ifit is helping will do catscan again end of month this is his last option been caring for him since 9/9/08 had to quit my job when he came home from hospital that day been in and out for two months.have to be there to help him cant walk to good by himself since 1st chemo got neurapthy of the feet never the same uses a walker to get around have to help him dress and undress give him his med and help with his colostomy bag changing it 2 times a day very hard to do the visiting nurse has stopped coming once a week says she cant since this is custodial care cant afford a nurse everyday yet he is getting more tired sleep alot needs ambien at night to sleep, try to get him outside if not raining for a hour to get fresh air yesterday pushed around in the transport chair for a hour to see the neightborhood. he now trouble breathing when he walks from bedroom to kitchen or bathroom told oncologist this on friday will see oncologist on wed he may need to go back into the hospital keeping him home as long as i can we have a 20 year old daughter who goes to college 3 days a week she takes us to doctor appts on mondays and fridays i want her to enjoy her weekends also and go out this is so said for her since we were told he wont last the year hope god is listening and makes it easier for us and him hope he has no pain very hard on caregivers just wanted to say hi and say god bless to you both for what you are doing keep up your spirits and posting will keep in touch mary
Mary It seems you are doing all that you can for your husband. your daughter will remember that. It is a very hard thing for children and others to watch but they see your love and support and how you stick together in time of need and she will cherish that for her life and hopefully grow and learn from watching you. My oldest son was 16 when my mom got sick he asked all the time why you leave so much, why do you have to do it, he had the attitude as "who cares, everyone dies" but a week before she went to nursing home he had met me at her house one night as she was bad and he couldnt believe his eyes, then the night before we had them all come up to say their goodbyes he came to the nursing home and i will never ever forget him standing over her holding me and crying. It then hit him and he realized life was short and he said to me he was so sorry. He grew up quick from that experience and he tells me alot these past few months that he admires what i did for my mom and he hopes that doesnt happen to me i tell him me too:) As they say children learn and grow from watching there parents and in mycase he sure did. Im sure your daughter does to.
Im sorry you had to quit your job I basicaly did that also i worked maybe if i was lucky 2 nights a week they were very understanding i only worked parttime. Dont know your situation but i hope maybe you took a medical leave, or family leave maybe even still getting paid i hope. Check into your hubbys job maybe he had some type of insurance or disability also.
I would not have changed it and if i had to do it again i would quit my job or whatever. Quantity of spending valuable time is most important and cannot be replaced and god forbid when his time comes you will be most happy at all the time you had even though it is hard and painful to watch and endure memories cannot be replaced.
Once he stops all treatments you can get hospice in their ASAP they are wonderful, have volunteers to help you even for 20 minutes, nurses, health aides to help with bathes, dress, walking, shopping, even to take you to dctrs appt. grief couselors, socail workers, pastors, its a good group of support. Good wishes
tracy0
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