New and tired!

marybear

hunpot said:

Children learn
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

new and tired
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

marybear said:

new and tired
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

Wishing you the best
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

dukeskid said:

Wishing you the best
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

Another Dad Update
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

dads helper said:

Another Dad Update
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

Guilt
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

dads helper said:

Another Dad Update
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

comfortable
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

New Update
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

dads helper said:

New Update
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!

OH BOY
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