This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
Stormy...I know your frustration level is thru the roof, but sweetie, possibly they are telling you all they know... Do you ever express how frustrated you are to the DR himself??? And let him explain ???? It is the 'not knowing something definite' that seems to be driving you insane...and I do understand that... but your dad has a voice in all this, why is HE not insisting either on another Dr. or is he alright with what is going on??? You never say how he is with all this... He is the one being poked and prodded and loaded up in the car.. if he has no problem with the answers he is receiving, then try to do your best to just do what needs to be done....and share with us how knowing something definitive would help you? I certainly am not a Dr. , but it sounds like his body is doing what it's going to do with the diagnosis he was given... and if the cancer has returned, they would tell you....I know you are frustrated, but again, how would something definitive help you? And I'm asking so you will try and calm down some as this is taking so much of your energy and has for as long as you've been on the thread..... sweetie, it's been a long time you've been here, if there was something to tell you, they would.... possibly you could try and accept his slow declline, do what needs to be done, and let the end result be what it is.... like I said, what does your dad have to say about all this???
M does not have a definitve diagnosis either, but we all know it's only a matter of time, as her body is wearing out from the cancer, she is starting to have horrible side effects from the transfusions....but are they are not telling her, yes, it's this,or no,it isn't that, No they aren't.. they are doing what they can for her under the circumstances ... so we deal with each situation as it comes up... do the best we can for her, help her when she is weak, ect... I know to a great degree you want this to be over... and that's ok. but maybe there is something you are supposed to be doing to get mentally healthy before it does come to an end... something for you to think about.... because from things I have learned about you since you started posting, you are going to flip out with guilt.... you know I'm not fussing at you... just giving you something to think about.... hugs to you....
I admit I'm getting frustrated with doctors. I'm currently trying to find a new doctor for me. This time I will go for a female doc. Male doctors just don't cut it for me. I tell him I'm so stressed from caring for 2 bedridden parents, work full time, I have no time to go walk 30min.daily. He said, "You can find the time. Anything is possible." Yes, I know anything is possible. The question is: who is willing to babysit parents for 1hour? He could have taken it one step further and say, "I know of this program or this organization or this paid caregiver association, etc.." Just throw me a bone...So, I'm now looking for another doctor. Didn't mean to say all doctors are bad. But, in my years of experience with mom - I can see that doctors wanted to tell my dad to quit trying to extend her life. Poor mom..
bookworm......the next time Mom is transported to the surgeon's office and is still on the ambulance gurney, tell the crew they need to inform the staff that Mom either needs to be moved to an exam table or seen now, as they can't wait. When Mom is on their gurney, first off it is illegal for them to take off and go to an emergency.......that is called abandonment and negligence. Second, if Mom is still on their gurney they can't transport anyone else. They are obligated to your mother while in their care. When a patient is on the gurney, they are just as important as someone else, emergency or not.
Something I haven't seen addressed here in a long time..........do you have DNR's on file? This is so very important when dealing with end of life.
I hope some of you will find some rest and a moment to yourselves today.
Welcome to all the new posters........happy to see you here!
Ladee hope your body feels better this morning.
I'm sorry that you and your sis are still in the dark about your dad. Nowadays, it's very difficult to find a empathetic specialist who is willing to "forget about the bottom line" and do their best to help the patient because they care.
I know what you mean about appointment and then not being seen on time. How about mom being transported to the surgeon's office (to change her stomach tube), stay on the gurney, and everyone is just sitting there uncomfortable because mom is still in the hallway waiting...past her appointment time. All the while, hoping very hard that there's no medical emergency that will cause the ambulance medics to leave mom and go to the emergency call. Very nerve wracking! Keep us posted. Hope you had a restful sleep!
Yesterday, my mum's nursing home totally failed to have her ready for her cardiology appointment and I was so glad that I got there early. They had her appointment down on the calendar for days, but forgot it. Man did I fuss them out. We were able to get her to the doctor on time. We had to wait basically an hour to see the cardiologist who asked several questions, listened to her heart and breathing and said see you in a year. I told him that being placed in a wheel chair and waiting so long was such an ordeal for my mother that I questioned if coming back in a year was needed when she does have a primary physician at the nursing home. He had no problem with that since it has been two years since her heart attack without any further problems. I think it is insane to make someone from a nursing home in a wheel chair have to wait 1 past their appointment time to see the doctor. I'm going back to bed.
This is what the dr said, not a damn thing. Ok get this- He said that he did not see any fungal, bacterial, or cancer cells in dads fluid, but he is not convinced that this still couldn't be cancer. So i am thinking what the hell does that mean?????? So he wants dad to have ANOTHER ct scan so he can see if he is getting more fluid on his lungs and if he is he said he would take it off but he then wants to send dad to a thoracic dr in moore county a hour away from where we live. So the thoracic dr can explore his chest area and see what he sees and maybe take a biopsy. Duh dumbass should have done a biopsy 7 months ago when all this pleural effusion started in the first place. I haven't understood why they haven't done one yet. Oh and that's not the best part the dr is leaving town, moving his practice to florence sc a hour away from where we live. In fact today was his last day at this office. And there are no other lung drs in this town we will have to drive a hour away to get to one or to go see him. He did not push for us to try to come to his new practice, sis and i thought that was kinda strange...... I think she is even thinking what is the deal that they can't find out what is wrong with him. We both said that we felt like we were getting the run around. So sick of this shit and these drs i could scream....... I swear i am going to quit going to these drs appts they are a waste, A Big Waste of our time. So that is basically what we found out the same thing that he has been saying, Nothing. He says he's not sure why dad keeps getting the pleural effusion. And i am thinking will hell i don't know either, but your ass is the dr figure it out, YOU have the tools, scans, images, reports all of that stuff of his and the knowledge of these health issues. Figure it out for God's sake. Gotta get off of here and get a cigarette. I've worked myself up into a frenzy. I'll talk or vent to ya'll tomorrow. Love and hugs stormyyy
Burned, I would see about hubby seeing someone to find out what is going on with him. Also sound like you had a very tuff day with the bank n such n I would had been pretty PO myself. Glad u were able to get it straighten out. I think you should go hide in the bathroom n take a long bubble bath or shower n gets some rest if you can.
Please make sure YOU are fit and well with proper diet, exercise, and anything to put a SMILE on your OWN FACE. YOU MATTER!!
Do NOT lose YOURSELF in the process.
Take care.
BeWell
nothing like brightening someone's day. :)
I really appreciate all the encouraging comments. It certainly helps to have this place to come. So hot here over 100 today and the air quality is not good.Stay cool.
Carol
I've concluded that waking up at 6am is not enough time. I now have to set the alarm for 5:45am.. hopefully that will help so that I don't go speeding to work just so that I can arrive 5 minutes late...my usual time. ...I still smile when I think of that talk my boss had with me. "You're suppose to arrive at work 15minutes before we open. Not exactly at 8:30. We do not pay overtime. When you come in, you will sign in at 8:30am and sign out at 5:30pm." The hell with that. No overtime? So, I would still come to work at 8:30am. Except now, with the parents situation, it's 8:35 or 8:40am! It's 9pm. Time to change their pampers, clean the trache, etc...
Beck thinking of you today..hope surgery goes well. Stormy ..prayers for you all let us know!
Ladee woopie! So glad that you may be getting rest and cool air soon!
Crystal..I have same problem..mine comes when it s convenient for him. Oh well take what I can get..stopped trying to figure it out not worth stress I get from being upset about it.
Seeme..safe travels and I pray the journey isn't too stressful with all the inlaws.
Carol..prayers. I figure that I will be feeling guilty that I didn't do something right . Try to think of good moments and the strengh that she has given you..she will always be your rock. Prayers
All is well here. Trying to keep a good attitude.
Pray we all have the best day possible in whatever situation we are in.