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.
Everyone else here hang in their vent if u must.
I just received a phone call this morning n those of u that r familiar with my situation with my stubborness-alcoholic dad n stepma n us kids trying to get them to get some help with their vicious dog n for their own health. Well, both r in hospital. One of my younger brothers done one of his wkly check up on them n he couldn't reach his mom on the phone to meet him at the gate. So, he jumped the fence n saw her laid out in the woods on the private property with bug bites all over her n our dad was laid out in the kitchen. Both alive barely! Most of the dogs were locked up in one room n rest tolerated my younger brother as he got help for both of them by calling 911. Both r on I.V. n getting something for the drinking withdrawals n stepma getting antibiotics. I will be packing my bags n making a trip to Fl to visit my daddy. The doctor mention about a social worker so maybe THIS time they will help us out. My older brother called social services about 2 - 3 months ago n they really did nothing. They just took her word-the stepma n didn't even check on my dad. she said we were all just over-reacting, well, I guess we r NOT OVERREATING NOW! I know that the social service can only do so much but they didn't even see if he was okay. At least when someone in family called the cops about the vicious dogs at least some of them were taking away n rest r vaccines. At least both r in hospital n getting some help as of now. I think the trailer got condemn or at least they said the electric was fired hazardous n they were taking pictures. I'll know maybe more later. Right now just trying to get them back to their senses if that is not too late. When it rains it pours. I would had tried to leave today but I was a nervous wreck so hubby had me walk around the block n we talked to get myself in gear so I don't spit anything out stupid or freak when I get at hospital. At least I feel a bit better that hubby can take better care n keep n eye on his own mom while I am gone.
Bookworm, this happens here all the time, pets are bad enough, but before this summer is over we will hear about babies being left in the car.... people are just too stupid and in a hurry now days....but I know she will remember me and not leave that poor dog in the car again..... stupid woman...
M agreed to letting the new girl work for awhile and try it out.... will take her with me this morning, and then be with her for a few evenings to see how S adjusts to her... we will be throwing S off of his routine... so everyone send a prayer for my S man today.... sure hope this works.... I need a break..... love and hugs to everyone today... find one thing to be grateful for today...
Good luck with mom in the morning... let us know if you needed a drink before noon... hugs....
And as far as if this could go on for many more years, well, you will have some choices to make.... hire someone to take your place and visit dad when you can or when you want to..... we all know you are obsessed with looking up things on the computer and then asking us questions, and then going on to the next thing.... the bottom line here is...... what do you want to do with your life in the meantime.... either way you are going to be eat up with guilt, guess that concerns me more than a timeline..... you feel guilty for THINKING this stuff, what are going to do when he dies.....you are not going to put this man in the ground then go have a picnic with Conner.... you are going to have adjustments to make..... and what frustrates me is you won't go to any counseling for all this, you won't stand up to your sister.... and you spend endless hours waiting for an answer that still wouldn't be an answer... I think the real question here is why Stormy won't stand up for herself, why Stormy doesn't' get some help with all these feelings... there is only so much we can do here on the thread, help you,love you, support you, cry with you, get angry when you are...but you are being naive to think all your problems with this will be solved when dad dies.....
And again I will say I understand how you feel, I used to think the same things about my dad... but that is another story....and we are talking about you here.....so no shame coming from me or others about your feelings.... they are just that, feelings....and look at what it is doing to you.... and the man is still alive.... I hope you just getting it all out brings you some clarity.... and unless we get a self righteous caregiver on here that shames you, we all understand... can't say that enough.... but from what I know about you since you've been posting, your dads death will only be another obstacle for you unless you get some help for all this while he is still alive... now, you know I am not fussing at you... but I just don't know what to say to you anymore..... other than, get some counseling, get a grip on your resentment, which we all feel at times, and do not be delusional thinking when dad dies it's all going to be ok.... it's not.... If I've upset you, I am sorry, but not sorry for saying you need some help dealing with this....am sending you angels to help you make a decision about your future... hugs...
Isn't it amazing how some poor unsuspecting dumb ass falls off into your world on the days that you have used up all your patience, all your compassion, all your energy, and then you go to the store and someone has left thier dog setting in a hot car........ OH YEAH, I WAITED FOR EM'..... this family comes out laughing and talking with thier cold drinks and chips, poor lady looked liked I had smacked her with dirty underwear when I started blasting her for leaving that poor dog in the car in this heat!!!! I could feel myself ready to put my hands on her to shut her mouth from making excuses, finally said, tell ya what... I'll call the cops, they'll let YOU set in the damned hot car and we'll see what excuses your dog makes...... I was shouting by this point...... and I might add, her very very brave husband was already in the car.... one of the kids said, Good Lord, and I shot that kid a look that shut him up too.... I got in my car and she said something else, all she could see was me saying M****r F**ker as I was staring at her...... Some people are too stupid to have kids, much less animals... everyone here is an animal lover....ya'll might not have gotten as stupid and loud as I did, but I would hope you would have said something.... I have a feeling she will never leave that poor dog in the car again without the air running....
The good thing here, I am so amped now, I can finish cleaning my house.......
Jam,Ladee, Notlike, Vic- I am going to try to address the questions that ya'll all had. I am not sure why i feel like something more is going on with dad, its just a feeling i have i suppose. Maybe it's because he has a rare form of cancer. Maybe it's because i am looking for a time limit of how long my life is going to be like this. I know that sounds awful, it sounds awful for me to have to read it let alone type it to all of ya'll. But i have no one else i can be this blunt or honest with except all of ya'll. I hope in the end all of ya'll will not think i am a monster for having these feelings. I just want all of it to be over with. I want my life back. I want my dad not to have to struggle to breath. I want my sister to be able to go home to her husband at night. I want to be able to answer a call from my sister on the weekends without getting all tensed up that she is calling for me to go check on him and then me getting stuck over there with him. I know all this sounds selfish me saying "I Want". But it is how i feel. I know all of ya'll too wish there was a way out of your situation. I am not trying to make this sound like my situation is any more worse than any of yours. Because i know that some of you are dealing with alot more worse things than what i deal with. Dad does not question the drs. The time before last (his dr appt with lung dr) dad asked the dr why was he getting the pleural effusion and the dr told dad that it could be cancer. I thought that my sister was in the room when dad asked this but she was not. She was in the hallway and overheard them talking. Then the dr closed the door and she could not hear anymore. This was after he had the thoracentesis done. I'm sure dad would be content to just not go back to any of the drs if he did not have to. Yes, I have some guilt about the feelings of wanting it all to be over with, but the feelings of wanting my life back override the guilt. Does that make any sense to any of you? I try to make sense of it myself and i just come up blank. I think sometimes that this could go on for several more years and when i have that thought i just turn my mind off i don't let it go any further than that because that is unimagineable for me. Maybe i am looking for a diagnosis, so i can say, "Yes, i knew it was that all along". I just don't know sometimes its like a obession me looking up stuff on dad on the computer. I do it for hours on end. It's exhausing sometimes. I am going to send this before i lose it. I hope all of ya'll understand and can kinda understand where i am coming from on this and hopefully ya'll will not judge me too harshly. I love all of ya'll for your comments, questions, concerns and prayers!!! Thank you. Love and hugs stormyy
Ladee-so good you talked to M. She must be scared, and seeing what's happening to S, she must be thinking of her own mortality. I hope it all works out soon for you with more help. Hugs.
Dad is sick. Went and got immodium this morning. He's taken 3 with no real effect. Didn't want to eat dinner. (And darn, I make vegetables even!) He's a bit dehydtrated, so I have him drinking some water, then maybe lemonade for the sugar and energy. I don't think he's getting many nutrients from what he's eaten, so he is tired. He doesn't want to go to the ER, but I will call the doctor tomorrow. He had to go so bad this morning, I found spots on the bathroom rug. I am worried. This seems to be getting worse not better.
Still don't know if M is going to hire my neigbor to help me out.... it turned into a cluster f**k before it was all over with... she asked me what my "intentions" were... WHAT???? To make a long story short she thought I was bringing in someone else to take my place... so we had a good talk... something she doesn't do with her family... she expressed her own concerns about how long she has, what is going to happen to S... ect.... it made me so sad for her that she couldn't be talking to her daughter about these things....
My blessing in all this? I realized how much I really do care about that crotetchy old lady, the one who has made me so mad I've left heal prints in her floor, the one who has made me cry.... so regardless of the outcome here, I know I have a different perscpecitve on things....and will be able to show her more compassion, at least until the next time she pisses me off...
Beck, you are crazy, thanks for the laugh this morning.... and tell hubby you need a pedi so those toes are LOOKIN GOOD while you are typing.... and why do people tap on a cast...had you been thinking about it you could have made it look like your hand was just waking up and make it look at your mom and say "YES???, may I help you" Sorry Beck, something like this makes my imagination run amok ....
And compose a rap song, dress your finger like little thugs, and scaire all the little kids, I'd pay to see that, not in a bad way... come on all of ya'll that just groaned with disapproval...it was a joke.... hmmmm
Realized yesterday I have no fear of going to HELL, I survive these Texas summers, been there done that.... hugs to you all, see if this post went thru, then share about M hiring someone to help me..... hugs to everyone...
Yesterday was the first day that mom n dad saw my cast...n my mother flipped out. She couldnt understand why the dr. would put such a large cast on me for jst a thumb!!....so...in moms gentle n compassionate way..she begins lightly "hitting" it, while yelling, "Why does it have to be so big!!"......then she proceeds to take my future "barnyard" fingers a tries to bend the "back"....OMG....n my dad is jst sitting in his chair, repeating over n over..."Is that ur cast?" Holy sh*t......its going to b a long 8 wks!! I'm afraid to go back over to see them....its not safe...lol
OK...i better take a break, now....the toes on my left foot r cramping up...hugs
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.
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.
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
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....................