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.
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
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.
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!
Ladee hope your body feels better this morning.
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!
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..
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....
Whooppppeeeeeee Vic has herself a COW PATTIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and the CROWN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My sweet stormy.............YOU DID NOT OFFEND ME..........so get that thought out of your head. I guess I was trying to say what ladee just said to you. I look at these situations with more of a clinical mind. Remember I dealt with dying people day in and day out for 25 years. After a while you become a little complacent. I care, don't get me wrong, but every single person that is being cared for is in some stage of the dying process. It's going to happen no matter how many doctor appt are made, no matter how many diagnoses there are.....is that going to make a difference in the outcome? You're wanting to hear something that just might not be there........................ "It is not fair for dad or for me and sis to keep us in a state of constant worrying and wondering what is going on with him when all three of us know that there is more to what the drs are telling us...............I'm not trying to be mean here, but can you explain what it is that let's you know there is something going on with Dad that the doctor can't find? Okay, let's say a doctor tells you "stormy, your Dad has cancer".....is that going to make you sleep better at night or are you going to lie awake and make yourself crazy over it? It won't change the inevitable. This is now the time to enjoy what's left of life with Dad. Let him spend as much time as possible with Connor to make some memories with Grandpa. Maybe Dad wants to just spend time with his girls and not be going to doctor after doctor. Now it's my turn to say I hope I haven't offended you, I worry about you because you are putting yourself into such a state that you're overloaded. And the answers that you want to find are just not there.
bookworm......good for you about the DNR!!!!!!!!!! So many don't know how they really work....that's great to put it on the wall. For those that don't have one yet, remember that if you are the POA, you will also need that paperwork to show you can speak for the loved one.....generally the amb crew will not take your word for it and are obligated by law to do something until calling medical control to terminate or paperwork is found. I always said I was going to have DNR tattooed on my chest. If your loved one is in the hospital that's a different story. But when at home, make sure that all the i's are dotted and t's crossed, or vice versa....:)
Ohio......let us know how the doctor appt goes. Sounds like mil is going to be busy with all the therapy.
beck..........how's your hand? Let us hear from you when you're up to it. Thinking about you!
The most important thing that doctors look at during the end of life cycle is quality of life. Realistically all the appts, all the tests, if they result in extending that life.......is the patient able to get up and walk, go on vacations, go shopping, take care of themselves, do all the functions of normal, daily living by themselves? Probably not and if your doctor is truly compassionate and has the best interests of your loved one in mind, they will tell you there's nothing more to be done. All the care giving and the experiences that each of us are going through should serve to teach us one thing........to be prepared ourselves and not leave our family with making a decision. My son knows exactly where our "dead documents" are......he knows I'll haunt his ass if he tries to resuscitate me......I've told him that if I have a mind to please take care of me and allow me to live in my own home as long as possible. If I don't have a mind, then by all means to please place me in a NH.......I don't want him under the burden of having to change my diaper or wipe the goobers off my face.
I wish there was a magic pill to take away everyone's worries...........oh wait a minute, there is.........but it's illegal...........okay, so let's just say that I hope you all can find a little quiet time for yourself today.
Sending lots of love and hugs....................
I feel very a lone. I'm sure my mom does also. Letting go is so hard.
I have felt all the flustrations all of you are feeling. All I can say is step back , count to 10 and continue. It won't change and it only makes you and everyone else unhappy. The best to all. Very hot in Tennessee . Stay cool.
Carol
carol our thoughts and prayers are with you..we are here for you.
Jam thank you...you always make things a little easier to bear. Love ya.
Off til tomorrow as soon as brother gets here.. Time away is helping me be a better person.
cmag-good for you for speaking up! Another appointment in a year shouldn't matter, and it will be easier on everyone to not go. Hugs.
Jam-Both parents do have DNR orders. In the hospital in Arkansas, sis, the social worker, clergy, and I spent quite a bit of time going through it with Mom. Then when she moved here, and we were signing up for home health, she told the lady she wanted to be revived. Argh! I figure that when we really do need home health (we haven't used it yet), she will be alot sicker, and I will show them the DNR papers. At the time, I wasn't going to argue with her in front of the case worker!
MM (motelmilly) -you are not alone. Many of us are walking this journey. Others of us are just running in circles! LOL Seriously, welcome. Please come back and let us know how you are doing. Hugs.
bookworm-I like your idea of posting the DNR by the bed. I will remember that for later. For some doctors, You are their patient, and they think that you should adjust your life to follow their instructions and be healthier. They don't take into account what your life entails. (I mean You in the general sense here). They care, but they don't take a holistic approach and look at the whole family or situation. I hope you find a good doctor who takes everythign into account. Hugs.
Ohiogal-prayers for the doctor appoitnment to go well. I hope you are able to get everything organized.
Beck-In a just world, the amount of pain you are having would be equal to how well the surgery went and how much better your hand will be! LOL I can't wait to read the post you type with your toes! Hugs.
Hot and dry here. I've been watering plants I usually ignore. And grilling alot, although Mom still heats up the kitchen with her cooking.
Noticing a few things with Mom. She is more tired again. Don't know if it's post-radiation side effects, she's getting sick again, or what. She also contradicts herself alot more. Primary doc told her she needs to drink more water, but she said she gets bored with plain water. But when I bought her some flavored kind (thanks for the ideas!), she said she just liked plain water. And she wasn't just being difficult - she didn't remember talking with me about the water. Today I was making a shopping list, and asked if she needed more carmel for ice cream. She said she didn't like the carmel as much anymore, now she's into hot fudge. But when we looked at the coupons, she asked for carmel. She has a brain scan in 3 weeks. I don't know if I'm really seeing something, or just worried what the scan will show.
Dad's been pookey, too. He's had the diarrhea. And I can just see in his face that something is bothering him. I keep trying to talk with him, but so far haven't figured out what's really wrong. He complained of not eating right, so I'll be putting on my chef's hat (on top of the chaeffuer, social coordinator, appointment keeper, housekeeper, and nurse ones!) and trying to cook more. Mom mostly makes processed foods for them, and I think he's getting tired of it.
Stay cool everyone. May Sunday be a day of rest for us all.