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dads helper
Posts: 12
Joined: Oct 2008

Hello everyone. I guess like everyone, I have one heck of a story and have been looking for a place for me to vent, help, talk, listen and learn. My father and I have always had a volatile relationship due to alcoholism and abuse. In February he was diagnosed with renal failure and dementia, so I took him in to take care of him. We (for the first time in our lives) developed a father-daughter relationship and enjoyed most every minute we have together. On a recent trip to Pennsylvania to visit family he became ill. Finally, someone yelled (me) loud enough and the doctors looked a bit harder. He was found to have a large cancerous mass in his esophagus which was pushing against his airway making it hard for him to breathe. The doctors put a trach in him and during the surgery took a biopsy. He was then diagnosed with stage four esophagus cancer. My siblings wanted me to put him into a nursing home in PA, but all my father wanted to do was come home and enjoy his dog! So, home I brought him. After the long trip (because we both live in NC), he was placed back into the hospital again.

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!

marybear's picture
marybear
Posts: 66
Joined: Jul 2008

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

dads helper
Posts: 12
Joined: Oct 2008

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!

marybear's picture
marybear
Posts: 66
Joined: Jul 2008

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

dads helper
Posts: 12
Joined: Oct 2008

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

dukeskid
Posts: 24
Joined: Jun 2006

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

dads helper
Posts: 12
Joined: Oct 2008

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

dell3
Posts: 7
Joined: Oct 2008

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.

dads helper
Posts: 12
Joined: Oct 2008

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

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

dads helper
Posts: 12
Joined: Oct 2008

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!

Cindy

marybear's picture
marybear
Posts: 66
Joined: Jul 2008

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 Mary

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

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

dads helper
Posts: 12
Joined: Oct 2008

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?

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

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

dads helper
Posts: 12
Joined: Oct 2008

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.

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

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

dads helper
Posts: 12
Joined: Oct 2008

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.

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

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.
TRACY

marybear's picture
marybear
Posts: 66
Joined: Jul 2008

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

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

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
tracy

marybear's picture
marybear
Posts: 66
Joined: Jul 2008

To Tracy thank you for your reply yes it is hard but he is on the tarceva lung cancer pill so i cant get hospice in hoping for some news by the end of the month hospice wont come in if you are being treated for cancer thanks for your kind words hope all works at with mom and you please keep me posted god bless mary

dukeskid
Posts: 24
Joined: Jun 2006

I wish I could tell you something that would make this better. I have learned from other children who took care of their parents dying of cancer that each experience is different. There are similarities, like I mentioned, like the dementia. I believe it is more exhausting physically and emotionally than taking care of an infant. Infants may not sleep, but there is a hope and future involved. Parents who don't sleep are angry, sad, and beligerent about their circumstances, even at 2:00 AM. I don't blame them. Dying sucks. Losing your mind, I think, might be worse.

None of that makes it any easier on those of us that dealt with it or are dealing with it. It took me 4 months to physically recover.

My siblings were in total denial. It was me who told them he was dying. They never bathed him, fed him, put him to sleep, or got him up when he needed to go to the bathroom. After it was all done and said, my siblings thanked me, but I don't think they ever understood the reality.

My heart aches for you and others in your situation. Can you get leave from your job? I was able to - of course, with no pay - but it still helped to be even 80% part time for 4 months.

Best wishes,

Duke's Kid

dads helper
Posts: 12
Joined: Oct 2008

Well, Dad had to go back into the hospital. He was admitted the day we started hospice care. I was not at work an hour and I got a phone call that Dad was bleeding. So, I drove home to see what was going on. I expected my Dad to be bleeding a little bit. After all, he was at home with my daughter and a woman I hired while I was at work. When I got home, I was in for a big surprise. This poor man bled about 1/2 cup out of his trach. It was everywhere. Almost as if it was straight out of a horror movie! It was scary. So of course we called hospice and they came back out. She immediately admitted him to the hospital. They all decided (and talked me into) placing him into a nursing home. Apparently, with his bleeding, the need for constant transfusions, and his weakened state, there is no way I could care for him the way he needs to be cared for. So after a day of running around, getting the medicaid proccess finalized, into a nursing home he went. This poor man is miserable. These places are crazy!

On one hand I am so happy that he is there. After all, he deserves to have around the clock care...something that I cannot provide for him. However, I am also very sad because I can no longer provide for him.

His room is pretty pathetic. When you look at, it is a tiny little white room with nothing in it. Almost resembles a cell. He hates it. The people are nice, but he hates it anyway. I am going out and purchasing things to personalize his room better. Right now, i have placed his pictures through out the room, his antlers, his bedding...I just hope (and pray) that after we get some more stuff for him that he likes it better (and so do I).

Again, I hate the fact that he is there. The guilt consumes me. Like I was leaving my child at day care for the first time! What an emotional roller coaser!

I hope and pray that this posting finds you all well! I hope and pray for a peaceful night and a blessed holiday season!

Cindy

Jenny77's picture
Jenny77
Posts: 3
Joined: Nov 2008

All caregivers feel guilt when they can no longer take care of those they love. This is natural, however you should know that you are still a caregiver and much needed. Realizing that you can no longer provide the kind of care that your father requires and placing him in a nursing home is probably the best thing for you and your father. It sounds like your father does not have much time left. Let the rest of the time you have be quality time. Allow the nursing home staff to provide the care that you cannot.

I know that nursing homes can appear grim at first. I think it is a great idea to bring in a few personal items to make your father more comfortable. Remember it is natural to feel guilt but you are doing the best thing and you have nothing to be ashamed of. Take care of yourself.

Jenny

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

Cindy--
the best thing is to make him comfortable, I felt the same way when i had to leave mom i did not want to leave that 1st night it was horrible. But i new that is where she wanted to be in her heart and that they would be there incase of emergency where i was not. It was the most difficult day of my life, I felt like i was abondoning her. Remember that it is best for him and try to feel comfortable knowing he has the BEST care for the time he has left. Just think if he was with you and something terrible happened and you were at work you would feel ten times worse knowing you left him at home.
Im sure once you make his room homey for him he will be more happier and it will also make you feel better knowing he has some familiar things for when you come to visit. Once we did moms room up she felt better and happier she said it ws nice.
Boy i wish i was closer it seems like you need a hug XXX.
That is one thing i did not have to endure with mom was the bleeding in the trache, I was always worried with that especially when she ate,she had alot of flem, discharge,CONSTANT drainage, the last month she got bad sores under her chin and under the trache where it would rub against the bones and skin it was horrible, and no matter what they tried they sores wouldnt go away she had to wrap a petroleum gauze up about 5 times and stick it underneath for some comfort was horrible. I can only imagine how scary blood is? Do they say what it is from? Will it ever stop.
The places so seem crazy but he will spend most if not all his time in the room so it wont feel crazy to him. They are small rooms but something tells me once he gets some things bring his favorite chair or books pictures, nicknacks, shelf hairbrush anything you think of. we brought moms dolls, rocking chair, table, tv, pictures, bedding, flowers, she had everything she wanted in this one little room.
Remember you are still the most important part of his care even in there you will make all the decsions so dont feel as if you have left him alone. Just remind youself that he is in good hands and try to make memories and keep him happy and comfortable. All that matters now is comfort. God is with you quality of life is whats now make the most of it and stay positive and smiling!!
tracy
If you ever just want to talk privatley you can email me directly hunpot@comcast.net

dads helper
Posts: 12
Joined: Oct 2008

So, this lovely nursing home I put Dad in is a waste. For starters...
I had to place him in a nursing home. We know this...I had to place him quickly. So, I took the word of the case manager at the hospital that he was in. She spoke highly of the nursing home that they were sending Dad to. I loved it because I got a good reference from a hospital and it was only 5 blocks away from the house. This was important to me because I could visit more often and be close by if needed. So there he went.

His first night there, I just assumed I was feeling the guilt of him being in a nursing home. I was critical (to myself)and convinced myself to give it some time. I did what I could (with what little I had) to make his room look nice. I added pictures, a TV, bought him his favorite DVD's, added colored blankets, added a rug, etc. But my feelings did not pass. Each day it seemed as if I was doing all of the work. Yes and no on the complaining part, but if he is in this home, why do I need to clean his trach, why do I need to ask why he is not getting his meds, why do I need to make sure his pic line gets flushed? But I kept telling myself it was my guilt. So on day 3 & 4 I started setting up stuff for him to go to bed. I then told the nurse on duity that I got his compressor/humidification ready for the night and that they just needed to turn it on. I placed it carefully in a particular location so I could remember it. The following day, when I went in it was obvious that it had not been placed on him.

Oh, forgot...I kept hospice for dad. They visit him in the nursing home. I expressed my concerns to them as well. They assured me that it was not my guilt. Guilt does not wonder why he is not getting his meds, why he is not having a night feeding via pump, why he is not getting his humidification nightly, why no one has changed his bedding, etc. These issues are those that are concerning safety, not guilt. So, they increased his checking.

Today, the case manager of the hospice unit came out to see for herself. She immediately decided that she would take the steps to file a safety/neglect claim on dad's behalf. She also will be having her administrator contact the administrator at another nursing home to help with immediate placement.

So, after all of this I get a phone call that Dad fell. He has a 102.1 fever and is very weak. When I went to see him tonight, they nurse on duty was concerned for dad and is very caring. Thank god for a good person on duty. She asks question. She keeps me informed. I hope she is on this weekend.

I feel bad that I did not take the time to look at this place myself. But, I was forced to act quickly for placement. I know that the anxiety of placing him cleared my judgement. What matters now is what happens to him (first and for most) and then what happens to those left behind in the nursing home. Surely this is not happening to just me. How can a facility do this to a patient. How can a facility do this to a patient that has family there at least 4 times a day? Me atleast twice and my daughter atleast twice. On top of that, since I know so much about dad and his care and how to care for him, they think I am a nurse or something like that, so knowing I would be there atleast twice a day? The health care industry is just scary!

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

OH NO sound like what i went through at first also. I swear there all alike. I had to make it known to them that i was not doing it i was there to spend qaulity time with mom and make her comfortable. I had to go to the administartor on one occasion within the first 2 days mom kept saying things werent right. You are good to keep hospice as long as you can they can act for you when you cant be there they can come in and out and be another set of eyes which is great but you are correct that nursing facilities think they do not have to do when family is coming and going and hospice is around BUT IT IS THEIR JOB not yours they are getting paid for him to be there make them work and make sure they are working if not go to the SUPERVISING NURSE EACH AND EVERYTIME and do not be afarid to speak up after you do it a few times they will no that they are not going to get away with leaving dad alone. Check his books and see when the last time was someone changed his trache, cleaned, fed etc... if you dont like what you see TELL THE SUPERVISOR ON DUTY and if you dont like what they say ask for the administrator im telling you they wont mess with you again.
Ask for an alarm to be put on his bed that way if he gets up they have to come running so he dont fall again.
He really should not be far from the nurses station. If he is not already ask that his room be moved as A SAFETY issue as he cannot talk for himself that he needs to be directly acroos form nurses station for his own safety and so they can see if he is ever in distress, GIVE him a bell incase that way if he needs immediate attention he can ring like hell hes only gonna get weaker he needs to be closer to nurses, so they can keep eye on him.
We all take the advice of a hospital or worker thinking that they know what is good so do not feel guilt you were acting on someones word of profession that they new what was good for your father as they are in the nursing field. Some facilities just think they can take it easy when family is so involved just stay on them and they will change their attitude quickly.
Guilt can get to us as acregivers and we ask WHY and think we should have done differently BUT we can only do what we think is best and when wrong happens FIX it Dont get down on yourself you relaized what was wrong and now you know so we change it. GOOD LUCK if you need help ill call them up for ya LOL

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